Days 1634-1636, December 29-31, 2014. Suffering comes from resisting the truth. If I say it enough times, can I apply it? I'm beginning to think the answer is "yes". One area posing a graduate level challenge for me has been our cabin in Angel Fire.
We built the cabin (in an economic sense, not with hammers) in 2004. We do stuff at the cabin. Skiing, biking, hiking, forestry, golf... Between 2012 and 13, all that sputtered to a halt for me. Being at the cabin has been difficult for me. Everything I used to do is right in my face.
We are in the middle of a week in Angel Fire right now. During the drive up, I had my eyes closed in a morphine-induced fog. I spent most of the ride coming up with a strategery for not resisting the truth at the cabin. Embracing the truth? Hell, no. Someone who claims to be there has much more morphine on board than I did in the car. But at least the former most of the time.
Here's what I came up with. We really have done everything in Angel Fire, and in almost all conceivable conditions. When someone goes out skiing, I will go, too. James left for First Tracks at 7:45 this morning. Instead of trying to not notice, and trying to enjoy my leisurely breakfast, I closed my eyes. I imagined parking at the end of the road, where it dead ends into the ski area. I could hear the frigid snow squeaking under my boots as I walked to the edge of the run. Cold, dry air filled my lungs as I tugged warm layers on and tightened them to protect from the blast of sub-zero wind we would eat on the trip to the base. Four firm kicks against our bindings, each followed by the secure click of the rear bindings.
A quick glance to Jimmy before we skated out to fresh corduroy pattern cut in the snow overnight by the huge snow grooming vehicles that smell like a mix of diesel exhaust and weed as they pass by you, hiding slopeside on a moonlit ski adventure (if you, hypothetically, ever did that, you would recognize the smell).
As we pushed off to break the inertia, the tips of our poles chirped like crickets as the poles bent forward in the densely-packed snow. Two sharp metallic clicks from each of our poles (a family tradition for good luck). Off the crest of the first pitch, the hiss of the skis increased in tone until I rolled my ankles to engage the right edges of the skis, prompting me to drift into a right turn (always right first).
Four more turns, ending with a left-hander pointing us straight across a long flat where, in about 90 minutes, people from the flat states will begin grumbling about how "the ski hill ain't even down hill" while they shuffle across the stretch, oblivious to the view of 13,000 foot peaks just ahead. As we glide the flat, the cold wind has caught our eyes by surprise, and tears fall from each under our goggles.
Next comes a minute on a gentle slope with the full killer view and a double fall line that keeps our right turns short and our lefts long and sweeping. The whine of a snowmobile carrying a chilled ski patroller to his office keeps us favoring the right side. We stop at the top of "Exhibition", a run 100 metres wide, groomed nightly, with a single fall line. Hero snow.
James is somewhere between 10 and 17. We leave a big gap between us because big gaps close fast at 40 mph. This will be completely unsafe after the lifts open, but the lifts are not turning. Right now we are looking at a square mile of corduroy with no bare spots, bulletproof slicks or obstacles (such as people named Bubba wearing Cowboys gear). Under these conditions we can let our skis run, we can lay them on edge trusting completely they will hold, even in turns fast and severe enough to have our knuckles almost dragging the snow.
From his first season on skis, the evidence of Jimmy's skiing was only two sharply defined grooves cut in the snow. This morning, I follow our ten year-old's tracks to a wide, sliding stop at the lift, where the small First Tracks group is assembling at 7:57. Perfect timing for the one hour we are about to enjoy on the quiet mountain.
This morning, I went through all of this slowly, striving for real time. I plucked the details from a few hundred stored memories. Yes, I missed the actual sights, sounds, smells and sensations, but I know them, and, by the time James stopped at the base, the run was already a memory for him.
I had lots of time to prepare for this. Two full ski seasons with marginal interference from ALS. I stood at the top of many runs and filled my lungs with crisp mountain air, armed with fair notice of what was coming. How lucky am I, right? How many people with roots as deeply sunk in skiing have taken their last turns with no clue about the finality? Along comes a heart attack, a car crash or a bad diagnosis and we have a worm feast.
So, I think I have won the war when it comes to the physical experience of skiing, hiking, biking, etc.
I do, however, have a lingering complaint. This technique is not putting a dent in how much I miss just being with my family out there. Sitting on the chairlift. Stopping for lunch. Whatever. But here's the thing: I can't imagine the cost that would come with getting over it. So I'm not even going to try. It is a few hours a day, and I get some great stories when they come back. I lived my pre-ALS days at the cabin in full throttle. While people are out, I chill at the cabin. I always thought about doing this. I figured there would be plenty of time for that later.
Turns out I was right.
Happy New Jersey! That was a typo. Happy New Year, too.
Days 1627-1633, December 22-28, 2014. Just completed our first 75 mile week in over a month. We have solved several bike problems (for now) that posed a serious threat to take me off the bike for good, like now. The neck brace is keeping air going in and out. A small reconfiguration of the leg straps is preventing a recurring assault on my groin (never a good thing). A piece of split pipe insulation secured to the leading edge of my seat is keeping my butt where it belongs.
However, power is leaving me at an unbelievable pace. My quads are melting away faster than grass grows or paint dries. Weakening muscles in my low back mean pushing hard brings searing pain to the lumbar. Mercifully, the discomfort instantly disappears when the pedals stop turning.
To address the back, I have messed with ergonomics and flexibility. Now I am experimenting with drugs. I worked my way up slowly but the first bite pills have taken out of the pain was on 600 mg advil, and 1000 mg tylenol. Do not try this at home. My liver doesn't have to last that long.
It's stunning how fast I'm getting slow. Our one hour ride has turned into 1:10 over the course of about two months. That's about 15% while you wait.
So, I'll keep hammering away as long as the back, neck and friends will allow.
Merry Christmas! Happy Hanukah, Chanukah, or however it is correctly spelled. Live, love and give.
Days 1622-1626, December 17-21, 2014. The last of a three-part rant about pulmonary issues. Probably not the last you will ever hear from me about the topic, but this is all for now.
We went back to the pulmonologist to review the round of tests I referred to in the "Suck It" entry. Once again, no physical examination (that's three visits with no doctorly behavior). He looked over the results. "Well, then, this is good. [smiles] Let's see you in three months. Now, don't forget to call me if you get sick."
I'm not making this up.
So we brought up the diaphragm pacing system we have been considering. I'm in the window of eligibility for the device. The U of Utah is ready to schedule us to come in for the procedure. "Tell us what you know about the DPS, please." Keep in mind the device was approved by the FDA in 2012. "We don't have much information about it -- we just haven't had that many patients on it." As soon as the words escaped his lips, you could tell he wanted them back. The following question, naturally, would have been "how many patients have you had with the system?" You wouldn't have had the heart to drop that one either. He is a very nice man. He does not, however, know jack about the DPS. The only device ever approved by FDA to treat a weakening diaphragm. The diaphragm being the muscle that inflates the lungs. Pulmonologists diagnose and treat diseases of the lungs.
Days 1608-1621, December 03 -16, 2014. The two most recent posts with have been about pulmonary function and have each involved me making fun of the pulmonologist, whom I pretty clearly imply is an insensitive jerk, a careless mo-ron, or both. In the earlier piece, I described my internal conflict over whether to post it on the world wide web. In the end, I took the foolish approach of resolving doubt in favor of risking I would find myself eating those words.
This has not happened yet, but I almost immediately regretted publishing. Yes, I could delete them. No, I am not concerned they are actionable defamation (all the elements are probably in there, except I have not named the plaintiff, and I might be right).
Karma is the problem. My unconscious mind is finding imminent and in-progress pulmonary distress lurking in every dumpster in the alleys of my brain. Then it projects images to my conscious brain randomly. Here's an example. Earlier this week, I had a dream that I got crosswise with a talking rat with superpowers. As I chased him down, he retreated into a huge slipper. I trapped him in the slipper by throwing several hacky sacks in behind him. I grabbed him and began bashing his head on a cinder block. Up to this point, the dream was unremarkable for me. With the rat still firmly in my grasp (he was screaming obscenities at me), I paused for a moment to clear a tickle from my throat. I coughed. Both lungs came out. Splat.
I have also been treating myself to a bottomless pit of real or imaginary pulmonary failings. On the bike, in my chair, middle of the night. Almost any time, anywhere.
Another reminder. ALS may not cause cognitive dysfunction, but it messes with your mind. But I will take the blame for this one. Arrogant writing fostered bad karma.
My preoccupation with my lungs and diaphragm is, though terribly interesting, thoroughly misguided. Before my pulmonary dysfunction has a chance to take me down, a far more sinister threat is coming for me. I am going to eat my own face.
For some time, I have had an annoying habit of biting my lip when I yawn. As with all things ALS, this one is progressing. Five to ten times a day, I chomp down violently on my lower lip. I draw blood two or three times. Once or twice daily, some sort of spasm sets in and I can't release the grip of my jaws. This is quaint.
I try to swallow yawns. I clench my teeth to the point they feel bruised. Sometimes you just gotta yawn. Another puzzle neurologists at Virginia Tech will solve one day. Probably soon after they discover how to spell "neurology".
Days 1601-1607, November 26-December 2, 2014. "Suck it". "Told you so". And "I wish I could actually drink a bottle of anything and eat a glazed doughnut".
These are all thoughts that crossed my mind as we received the results of more breathing function tests today.
In the immediately preceding entry, I wrote about our frustrations over our recent visit with my pulmonologist. Two weeks ago we had two tests. Today the results were 50% and 33% higher, respectively. One study tested out higher than six months ago.
I still have ALS. I'm not getting better. But I'm also not getting dead as fast as we heard two weeks ago.
It's a matter of perspective. From where we are, this is an excellent day.
Days 1596-1600, November 21-25, 2014. [I've been writing about ALS for nearly four years. have never had so much uncertainty about publication of a piece I have finished. I didn't go to medical school, but I have displayed a fair amount of arrogance about some of the medical advice I have received. Do I think I could follow some of these people into a revolving door and manage to come out first? A few of them, yes. But this entry seems like a bad idea from a karma standpoint. At the end, I will explain why I finally decided to hit "publish". For now, I just want you to know it wasn't easy.]
A surprise every time I see the pulmonologist. The first time, he ordered a chest X-ray. "Why?" I asked, "to see whether I have been aspirating?"
"Oh, you have been. I just want to see how much damage."
So off to the radiology people. A follow-up visit was set for the next month. Before I saw the pulmonologist, I went through about a dozen lung function tests. When we saw the doctor, he said the testing looked good, and, to his surprise, the chest X-ray revealed no evidence of aspiration.
He was all smiles, displayed no concern, and said "you don't need to see me for a while. Let's make it four months".
Sweet. Not what we had been braced for, and sweet.
Last week was four months. Same drill -- lung function tests, then the doc. No chest X-ray. This time, we were not braced for anything. We expected the usual -- a modest decline in the numeric values, and "see you in four months".
The testing was different -- a simpler machine, only two tests, and the test everyone talks about with ALS (forced vital capacity) was not one of them. Something was different about the way the therapist performed the test I had done before. We are accustomed to drops of 6-8% between visits. The first reading was 60% lower than July. Same with the second reading. The therapist puffed her chest, "they match!" She was satisfied. I asked to try again. This one was 50% higher than the first two (still a 40% drop from July). "We'll use that one", she said.
We had an hour set for testing before the appointment with the doctor, but the tests took only a few minutes. "We can probably get the doctor in to see you between patients". How nice.
The doctor came in, again all smiles. "It is time to make the difficult decision", he said. My reading on the one test shows "minimal" diaphragm function. Over the next few minutes we heard him say the following: 1) Not too early to call hospice, but let's start with a referral to palliative care. 2) This is an unfair disease [pat on knee]. 3) Most people who have ALS don't go this route, but you could have a tracheotomy and mechanical ventilation. You would have to be transferred out of state for a while [this is one of those things we lawyers call a "lie"]. 4) Maybe a year. Maybe less. Maybe more. 5) I should keep biking if it's still fun.
All smiles. And all based on the one test with weird results. How about a stethoscope to listen to that minimal diaphragm creaking away? I have seen him three times, and, the knee pat aside, he has never laid a hand on me.
Everything he said (except the piece about having to leave New Mexico, which he made up) is coming. I have ALS. Look, I can't even argue about the year. We are deep in the poop, man. Sometimes I can't even swallow my own spit. But I'll bet a bottle of anything and a glazed doughnut this dude is wrong about the imminent demise of my diaphragm.
Having said that, it is time to start looking into the diaphragm pacing system (which my pulmonologist didn't think to mention). It's an implanted device that will keep the diaphragm pumping longer and happier.
You have to have more than "minimal" diaphragm function to even be eligible for the pacer. This will turn out to be a most unfortunate entry if I go in for the pacer evaluation and find out the diaphragm is already dead, and that I have been breathing by way of a process known as "magic".
A bottle of anything and a glazed doughnut.
[Here is why I erred on the side of publishing the piece. All of the above are actual things I have thought. I cannot un-think any of it. The back and forth I went through on whether to publish, as well as the debates I have with myself within the piece are illustrative of a point worth making (even if it is repetitive or sort of obvious): ALS may not cause cognitive dysfunction, but it does mess with your head.]
Days 1583-1595, November 8-20, 2014. A long time ago I wrote about new ALS symptoms: "It's not your imagination, and it won't get better". This, "Schneebeck's First Law of ALS", has held true for more than four years.
The folding airway/gagging issue that cropped up before Acoma in September is no exception. Each ride has produced a lump in my throat that makes breathing challenging. And the regularity of the gagging has increased as well. It is actually not as fun as it sounds.
We have come up with a temporary solution. Bookmark this page in case you forget and you ever run into this problem. Don't call 911. Don't make an appointment to see a pulmonologist. Go see the nearest lawyers who have billboards on the highway and ask the receptionist for a cervical collar.
It has been magic. Just slipped into the comfortable and stylish turtleneck, and I can breathe again. 75 miles since then, and I haven't gagged once.
Just another bump in the road.
Days 1574-1582, October 30 – November 7, 2014. Boo! The tradition started in 1998. I took an appliance box, decorated it like a restaurant table, put a foil roasting pan in the middle, cut a hole through the box and the pan, put my head up through the holes, wore a scary mask, and had Jean place fake potatoes and vegetables in the pan around my head. Voila! A head on a platter.
Every year our presentation has become more elaborate. A local radio station named our neighborhood the best place in the Burque to troll for treats (they may as well have just called our house the best house in the city because we are the class of Altura Park). By 5:30 traffic around the park was in gridlock.
About 1000 visitors and over 55 pounds of candy came and went. The commotion in the yard could be heard from a block away. I'm not as nimble with the wheelchair as I was a year ago, so I parked and watched from various locations. It was a heck of a show.
The best costume: Kat Winski, as a recently spayed dog. Including the cone to keep her away from the healing incision.
Best spooks: Jimmy, Niko Hansen and Olav Hovstad. Jimmy and Niko were real. Or were they? When I was the creep in the casket, I had an age limit. If there was a little kid nearby, I remained motionless even if there was a teenager ripe for a scare. Jimmy and Niko were unconcerned with such collateral damage. In fact, they took it right to the toddlers. At any moment from 5:30 until about 9:00 there were 20-50 people in the front yard. About half that time, at least one of them was crying. After running the James and Niko gauntlet, the kids would get to the candy. There, the relief was often short-lived, as Olav would give birth to a zombie baby.
Best quote: "Daddy, I don't want to be at this house anymore". To which, Daddy responded, "Ellie, don't be a baby, they have candy right past the vampire, honey".
Best automated feature: In the front yard, we had a sign: "More treats here", with an arrow directing people to a plastic jack-o-lantern filled with dog biscuits. To earn a milk bone, the kids would walk through two motion sensors that triggered a jumping rat or a pop-up corpse. I designed this as a supplement -- a second stop. However, I watched as several kids made the unfortunate choice to avoid whatever was causing the shrieking at the front door, opting instead for the non-threatening bowl of (presumably) candy.
Best backlash: For a posture break from his position at the door, Niko adopted a positively inanimate pose lying on the grass like a haphazardly placed ornament. Until someone got close enough to be in the danger zone. Then he would suddenly come to life. One curious victim reacted with a piercing scream and ran backward several steps. She regained part of her composure, marched back to Niko, put an accusing finger in his face and scolded "you know what? %#&$ you!"
Second best quote: Jean was my sidekick, Robin. Batman's actual Robin was a male. This one was wearing spiked heels, a long red wig, and was definitely not male. Jean introduced herself to an eight year-old as a "zombie transvestite Robin", quickly correcting herself, "oh, you don't know what that is". A parent leaned over to quietly give Superman a hand -- "you know, like Aunt Michelle".
Halloween was, as the IOC says at every Olympics closing ceremonies, the best ever. But this one really was.
Days 1571-1573, October 27-29, 2014. The Day of the Tread. This was a very funny day. Every ride is different, and, when you add a Halloween theme to the mix, the possibilities are endless. I had a smooth start, but it turned suddenly ugly.
Melonie came over early and woke me up almost two hours before we were due to roll out. Most days I wake between 9 and 11. So the 5:45 reveille should have been a real shocker. But I was alert, and my legs were calm. It was unexpected, and I mentioned it to Mel. She had also noticed. In hindsight, I think what was happening was the middle of the awakening occurred during the tail end of an interaction between drugs I took before bed. Well the happy stasis ended promptly at oh seven hundred, at which point, my body went into full spasticity mode -- muscles (most annoyingly, opposing muscles) went to contraction -- and everything we had to do was a battle. One example. Getting on the tandem requires some flexing and extending at the knees. Someone had to physically bend my legs for me while I tried to focus on overriding the spastic reflex. To compound the problem, the cool morning's air delivered uncontrollable shivers. Nice.
Meanwhile, the revelry had begun. Michael Donovan landed a new team sponsor, which he proudly announced as he unveiled part of the costumes for John, Dan, Paul, Nick and Mel.
The "V" on the capes? Vagisil.
So we rolled out the driveway with a team consisting of:
Four zombie Vagisil superheroes (Michael Donovan, Paul Mohr, John Blueher and Captain Dan Porto);
Zombie Vagisil Wonder Woman (Melonie Dawes);
Zombie Vagisil Ironman (Nick Pisano);
Dia de los Muertos spook (Kat Winski);
Zombie Transvestite Robin (Jean); and
Zombie Batman (ALS Boy).
We took a leisurely four mile trip to downtown Burque for the start. There, we added Nancy Fortin to the crew and took off.
By then, my body had warmed, processed the morning medications, and calmed. This was good news and bad. One of the relaxed muscles is responsible for restraining the release of stuff the body no longer wants. I'm not going to a lot of detail here, but a port-a-potty is useless to me, so I was committed to staying as-is until we returned home.
The ride was otherwise nearly perfect. Temperature was ideal. The cottonwoods were at their peak of color. And the team of experienced tandem wind blockers protected us from the absolutely predictable head wind that materialized with about 25 miles remaining. The annoyance of my little gastrointestinal issue was not enough to distract my attention from the beautiful Fall day or the spirited banter within our little undead peloton.
If there is a headline from my personal day on the bike, it will read: The 110 mile El Tour de Tucson ain't in the cards. Top two reasons: (these are the smaller font under the headline) Man spends five hours on bike prairie dogging; reports being "very tired" after 62 miles.
Days 1568-1570, October 24-26, 2014. Tomorrow is the Day of the Tread, and the one year anniversary of the last time I had a cycling accident (after 80 uneventful miles, we took the entry into our driveway too hot and flipped the tandem).
This time, we are planning a metric century (64 miles), which will double as an evaluation of how we think we might hold up for an actual century -- Tucson is less than a month away. We do not intend to repeat the driveway dismount.
Days 1561-1567, October 17-23 , 2014. Gravity. That is how I swallow now. The tongue is no longer willing to help, except it remains available for sort of smooshing soft stuff vaguely toward the back. But the food must be slippery like heavily-buttered mashed potatoes. I tried some pureed steak this week. Very tasty, but I had to four bites before the fourth one pushed the first one far enough back that the first one fell into the swallower. This went fine -- three on the tongue, the fourth pushes the first down the hatch.
I did not, however, consider the end game, and, when I finished the steak, there were three bites stranded on my tongue. How did I resolve this dilemma? Stay tuned. They are still there.
Not really, but the resolution was inelegant. There is a silver lining. We found that milk can be poured from a spoon directly to the back of my throat by using my tongue as more of a ramp than a "muscular hydrostat on the floor of the mouth (of most vertebrates) which manipulates food for mastication". Using this technique, I can drink more liquid than I have been able to get down in many months. I have never tried it, but this must be the method recommended in the instruction manual for a beer bong.
The easiest food -- actual food -- to get down is Jeff Croasdell's Italian Wedding Soup, which seems to consist of orzo, chicken broth, spices, olive oil, butter, bacon grease and crack. You have no idea how good this tastes. It is the dinner equivalent of a hot Krispy Kreme doughnut.
Days 1550-1560, October 6 -16, 2014. Fall in Angel Fire. There is nothing quite like it. I went to college and law school in opposing shadows of the Blue Ridge Mountains, within 45 minutes of the Skyline Drive. But the venerable Virginia mountains, which geologists say are roughly four gazillion years older than the Rockies, lay low above the historic rolling landscape of western Virginia. The foliage is beautiful, but generally available only in small doses. Wide vistas are rare.
New Mexico's southern Rockies were born of a less violent collision of plates than the northern chain. Even so, peaks throughout the Land of Enchantment tower more than a mile over surrounding cities and towns less than five crow-flight miles away. This produces up-close wide angle views of many miles of high mountains.
The Village of Angel Fire sits in the Moreno River Valley, which is funny because the "Moreno River" exists mostly in the form of a vague and invisible sensation of cool, damp air in the Valley. Mountains rise above the Village in a split chain of the Sangre de Cristo Range ("Blood of Christ" in American).
Our cabin sits north of the town and about 1000 feet up. In summer time, the ridge line to the south is painted with various shades of green that fade in and out with the stands of aspen. But, for about four glorious weeks in late September and early October, bold streaks of gold replace the muted greens.
The peak of color usually comes the second week of October. In other words, now. The second weekend of October is also when Angel Fire Resort hosts the Red Bull Burner, sometimes known as the Final Descent. The last opportunity for bikers to enjoy the trails without earning it, which is to say they don't run the lifts again until ski season. That is also... Now.
I won't be riding the Burner this weekend, but I did about three months after I was diagnosed with ALS. So I'm going to tell that story.
The starting point: downhill has never been my thing. In normal mountain bike racing -- the kind that includes climbing -- I had to hope I had enough advantage before the trail turned down that people would not have time to catch me. That the whole field would be gaining on me was a given. The idea of me racing a downhill event was laughable, but racing was not the point for this one.
In October my hands were fairly weak already, but I was still pretty independent. Two months earlier I had ridden the Leadville Trail 100 "clean", meaning my feet only came off the pedals at rest stops, with the exception of a short section on "powerline" where even top professional riders come off their bikes. My strategery had been simple -- cruise the easy stuff, and hammer the steeps. It worked. Only very special athletes can ride an all-day event with a consistently hard pace. Special athletes and shameless dopers. Like Lance Armstrong. [Note for Lance's defamation lawyers: Which clause of that sentence was I referring back to when I wrote "like Lance"? Was it "special athletes" or "shameless dopers"? Was it both? If you think it was either of the latter two, did I mean he was using at Leadville, or was I summarily characterizing the conduct to which he fessed up with Oprah? It's tough to say even if you diagram the sentence. But here is a hint just between us chickens: I meant he was juiced when he broke the Leadville course record. Leave a note on the guestbook. I will waive service of process. The very first words in this blog -- way back in 2011 -- were "We have no Lance Armstrong", before that was funny. If Lance were to sue me, we would have a Lance Armstrong. I could make that the greatest thing to happen to ALS awareness other than the whole ice bucket thing. So, bitches, bring it. Please.]
The 2010 Red Bull took place on a perfect autumn day. Cool, and not a cloud in the sky. I set up my little camp near the finish line, barely uphill from the chair lift. Here is how the Burner works: Take the lift to the top of the mountain no later than 8:30 for the 9:00 start. Bikes were placed at the start line, and riders run 100 meters to the bikes after the gun. Hop on and head down the mountain. The dude/dudettes with the most laps by 9:00 at night would take home prizes. I would not be one of them. My plan was to ride a comfortable pace that would hold up all day. Without stopping. I did not intend to break a sweat.
There were two courses -- (1) an actual downhill, teeth-rattling, heart pounding freefall of a course that the pros would click off in around five minutes; and (2) the "recovery" course, where tired riders could retreat for a lap to allow beat up joints, the spinal column and other important parts to rejuvenate in lieu of stopping and losing valuable time. I would ride the longer "recovery" course all day. No rule against it. From a competition standpoint (which was not my motivation) I was the tortoise; and everyone else were the hares. They would go much faster, but they would also crash, beat the crap out of their machines (necessitating repair stops), and beat the crap out of themselves (also prompting repair stops).
I was on schedule to make the start until I began to pull on my jersey. I had lost enough upper body strength and manual dexterity by then that putting on a shirt was an adventure with an uncertain path and outcome. This particular maillot had to be worked over downhill biking body armor. To arrive at the desired outcome, I used the rear view mirror of the car, the handle bars of the bike, a pair of pliers, and -- the tool that brought it home -- the door handle of an outhouse. There were many humans around, so why didn't I just ask for help? With the quality of my voice, I worried I might have to do a field sobriety test or be denied access to the event by the organizers if I were to tell the truth about my limitations.
By the time I was ready to roll, it was 8:45, and I had a 16 minute chair ride before the start. On the trip up, I didn't fret, confident the dude factor of a downhill event would translate to a delay in the actual start time. It didn't work out that way. When I threw my leg over the top tube, I could hear a bullhorn barking out final pre-race instructions. I coasted to the bike pile, laid down my steed,and walked toward the group of racers. Just as I reached the front end of the pack, the shot was fired. I spun on my heel and began trotting in the direction of my bike.
It was not the mad dash I had experienced the year before. I was surprised people smelling vaguely of marijuana were not elbowing past me in order to earn a better position as the wide cat track transitioned to single track for the opening lap. Indeed, I counted only six riders in front of me. And I was not hurrying. I noticed how smartly dressed the field was. One guy had a helmet that matched his jersey. Another was in a full Specialized Team outfit. Where were all the strung out guys who had spent the night in the parking lots? There were a lot of shaved calves in the crew. Where were the dreadlocks and torn clothing? I was momentarily glad I had at least sprung for a downhill jersey with my team logos so I would fit in a little. A year earlier I had worn my high school football jersey over the pads. I was looking good. And feeling way too much confidence, as I was about to discover.
It dawned on me slowly. They had given the pro category an early start so they didn't have to contend with the riffraff. Like me. I checked over my shoulder. The riffraff riders have were still gathered waiting for the signal.
I turned to walk back. I could feel the goggled eyes watching. Judging. Was I cheating -- trying to get a head start -- or was I just a dumbass? They would know very soon. As I reached the group, I tried to salvage my image by announcing "warming up" in a joking tone. Dead silence.
And then a pistol shot. This time around there were plenty of elbows, the vague aroma of weed and dreadlocks. Before we reached the bikes, I had settled in to the caboose position.
On the bike and heading downhill with the Sugar Hill Gang rapping in my right ear. The trail split at the entrance to the World Cup downhill. To my surprise, I saw three riders peel off to the "recovery" route. Sweet. I might have company on some laps. Maybe, perhaps, I would not be the slowest rider on the mountain.
I noticed the three riders pull up shoulder-to-shoulder. I was gaining on all three! "Hmmm", I thought, "I wonder why they are talking?" They stopped and turned around with a chorus including mostly "dude" and F-bombs. I rumbled past them as they pedalled back to the entry to World Cup. My imagination had fast-forwarded to a day of shared lift rides swapping manly stories and trading cashews, doughnuts and energy bars. That vision was short-lived.
I was all alone. My mild disappointment was also quickly disintegrated by the condition of the trail. I was riding on a carpet of golden aspen leaves. There was a tunnel of gold through one section of low-hanging trees. One banked 90 degree curve was completely painted with aspen leaves. The only marginally technical section of the four mile descent was a quick drop into dense forest on a narrow trail with a few tight turns with high mistake to consequences ratios. But the surface sounded like Rice Krispies as each little knob on my tires broke contact with the tacky, damp trail. Perfect riding conditions. As I approached the end of my first lap at the base, the PA crackled "We are waiting for five more racers to complete the first lap."
Another flash of sunlight. Four riders were still wrestling the World Cup course. The tortoise within me snickered at the prospect of finishing faster than anyone. The race, after all, was scored by lap count. It didn't matter how we got down the mountain; it only mattered that we made it.
To slow incoming riders before the lift, the organizers had installed a twisting chute that brought us to walking speed. Right next to the chute, two EMTs were busy with radio traffic as they sat on 4-wheelers. As I passed the duo, I heard the radios squawk "four riders". I assumed that meant the four who were still on the course when I completed my first lap were very literally "on the course".
I settled in for the lift ride consoled by two things: I had yet to be lapped by anyone, and the burrito in my pack was still warm.
There were explosions of yellow in every direction during the chair rides, and each lap was different from the prior one as the shadows emerged and faded from place to place. The quality of the light brought out new shades of color all the way through the 6:30 sunset.
When I turned on the lights on my bike and helmet, everything changed. It was a moonless night, dark as the inside of a cow. The breeze died down and everything seemed silent on the chair except the occasional rattle of a bike in the distance. The trails took on a slightly creepy feel, knowing that the only mountain creatures capable of occupying a higher place on the food chain than mountain bikers (bears and mountain lions) come out at night and become very grouchy when surprised.
My sub-30 minute lap pace had held up all day, but picking my way carefully through the trees was costing me 10 or 15 minutes per circuit. Also, the traffic on my course picked up considerably in the darkness. This is another way of saying lots of folks were passing me. When this happened, I opted for a complete stop because my lights were effective in reminding me of the trail characteristics, but I didn't trust them to teach me about trailside features.
Shortly before 8:30, I met Jean and Jimmy at the base for a photo op before my last lap. The ride to the top was sweet. I was about to start my 24th lap, which had been my goal since mid-morning, and was two more than I completed in 2009. The headlights on the bike hanging on the rack behind me were illuminating trees on the side of the ski run. Pine, pine, pine, BAM! Gold aspen. The difficulty I had been experiencing squeezing my brake levers told me I would not be doing this again. It was the first time I crossed that bridge with ALS, and I felt like I handled it well. Between then and today, I have had lots of opportunities to do things for the last time. I have never been better at it than when I crossed the finish that night (my tortoise approach to the day, incidentally, paid off, as I finished in the exact middle of the field).
The secret to an acceptable farewell to whatever ability has come in knowing it's the final one and taking lots of pictures in my mind. As you can tell from the ridiculous detail I have recounted above, I succeeded.
The Red Bull was four years ago, and yesterday. And it is OK with me that it is also tomorrow. I will be safer in my wheelchair.
Days 1545-1549, October 1-5, 2014. UNM Sports Update.
The Lobos Men' Soccer Team knocked off West Virginia this week, and, according to the Albuquerque Journal, "Mid-way through the second half, Albuquerque Hill High graduate James Bannon-Schneebeck made his Lobos' debut as a goalkeeper." James had the Lobos only save of the match, a rifle shot that was a squirrelly knuckleball off Jimmy's chest and easily controlled before our boy sent the ball about 70 yards downfield. James was a little jacked up in his first NCAA minutes, and he actually delivered two balls directly to the Drexel keeper. He does have enough power in the foot to do the job.
Days 1539-1544, September 25-30, 2014. "Well, God bless you anyway... I guess." The quote of the week. I guess.
We went to Illinois for the wedding of our nephew, Sean Eckhart to Annie Salmon. There are many Bannons in Illinois. When there is a wedding, there are even more Bannons in Illinois.
The weekend generated three stories fitting within the mission of Oso High, and here they are.
One of the few things I can still eat in relative safety is soggy Rice Krispies. If you look at the nutrition information on the box, you will learn the reason this is so: there is nothing in Rice Krispies. Until, that is, you add sugar.
Every evening I have a bowl with a generous sugar add-on.
Friday night, there was a Bannon gathering at the beautiful lake house owned by one of the Marys and her husband. I'm not implying anything here when I say Jean is capable of carrying five simultaneous conversations in a party environment. It does require her complete focus. It was in against this backdrop I asked Jean to make my cereal.
Pop quiz: One of these contains sugar, and one contains salt. Which is which?
When Jean was presented with the choice between the two items in the picture, the question was not framed so clearly, by which I mean she was not given the hint that one contained salt.
Brussel sprouts taste horrible, but it is not a surprise. They look like the will have the flavor of ass, and they do. Nothing to write home about. Rice Krispies, however, look delicious. If you take an enthusiastic mouthful and it tastes like it has two tablespoons of salt... Well, that can be a problem. Especially if your tongue is not strong enough to eject offensive stuff.
Some of the Bannons picked on Jean for this, based on the "common knowledge" that the ceramic thing is a "salt pig". However, according to cooksinfo.com a salt pig has a circular, vertical opening and a knob on top. And, "when stood on its opening, it resembles the back end of a pig".
The salt pig at issue here, when stood on its opening, resembles a hockey puck or an upside down sugar bowl. I'm with Jean on the pig.
Second story. At the wedding reception I decided it would be a good idea for me to stand up to "dance" with Jean. The wheelchair was elevated to the point the seat was at about the height of my belt. Convenient, I thought, because it would allow me to simply lean back a few inches to stabilize me while Jean reorganized to help me sit.
While we were cutting the rug, however, someone (also concerned for my safety) turned on the power, lowered the chair to sitting height, and left the power on. I leaned back. Back. Back... And crashed into the surprisingly low chair with Jean still attached. Someone's body part hit the accelerator, and we shot forward into the next table.
Just another day in paradise.
Third story. When we board an airplane, the visual effect is not at all dignified. I drive to the end of
the jetway. This part is relatively friendly to my self-esteem. The rest of the journey is not.
I get transferred into an aisle chair and strapped in strait jacket style. We roll backwards to the seat, unbelt, and pour me into my seat. Lots of appendage flopping in the process.
Leaving Peoria, we had settled into our seats and propped me in place with four pillows. Other passengers were filing in, and I looked up when I heard the gruff voice of an Uh-Murrican Patriot. "You a vet?" I shook my head in an apologetic manner, as Jean said "No. ALS."
"Well, God bless you anyway... I guess."
Hell of a time to have no voice.
Days 1534-1538, September 21-24, 2014. El Tour de Acoma!
The crew was: Dan Porto, Nick Pisano, Paul Mohr, Melonie Dawes, Tom Parker, Anna O'Connell, Liz Fledderman, Irene Agostini, Roberto Ortega, Jean and ALS Boy.
As I was saying, we were plenty ready for the ride. We drove to Acoma Saturday night to ensure mental preparedness. Two of the crew, with youth in their favor, decided to enhance the physical challenge of the event by leaving the savory enchilada dinner in our room, then impairing their judgment by ingesting a liquid that may be prohibited by Pueblo law, then easing the burdens of conscience by contributing to the financial well-being of the People of Acoma by way of the Hotel casino. By 4 o'clock in the morning, the burden had been lifted. And the pit boss tugged at Nick's sleeve to announce the closing of the 24 hour gaming operation.
As I was saying, we were plenty prepared for the ride. Which is why we were parked about 100 metres from the start line when the round man said "go". Not surprisingly, I was the problem. There were two issues. First, the headrest on the tandem has to be adjusted within a tiny margin. If it is outside the 2 micron window, I either get the crap beat out of me or I can't breathe. Sometimes both.
Seems like the sort of thing we could have taken care of before we left the Burque, no? Yes, but the headrest has to come off to put the bike in the truck. My plan to deal with the setting was to be in the tandem at 7:30, a half hour before the start. That would give time for us to take a quick spin so my body settled into its real ride position to check the adjustment's accuracy. Yeah, that didn't happen. We had to wing it.
Second, I like to fuel up right before we hit the road. So the 7:30 plan would have given the perfect interval after the test ride for feeding. So, there we were. A sadly set headrest, and just beginning to pour food in the feeding tube when the round man said "go". We were far enough from the line we couldn't even see the round man. I don't even know if he was round. I'm just guessing. But I bet I'm right.
In hindsight, spotting the field ten minutes was brilliant. We passed people all morning, and the only people to slip past us were riders we had already passed at least once. It was very uplifting.
So, from the get-go, the head support was wrong. Seems like the sort of thing we could stop and fix, que no? Once a bike racer... The plan was to make our first stop at the 27th mile. It would have to wait. The nature of the adjustment problem was the pad was too high on my skull. Instead of supporting my melon, it was gently pushing forward. If you imagine the windpipe as a hose, the effect of the placement of the headrest was to slightly restrict flow through the hose. This felt like someone was lightly pressing into the notch on my throat just above the center of the collarbone. Nice. When this happens, I have found the effect can be partially countered by sliding my lower jaw forward. Aside from the jiggy look of this, the only adverse side effect of the maneuver is it becomes difficult to form a smile. Even if I am having fun.
The first half of the 50 mile course is all about the climb I described in the previous posting. In fact, from mile seven to the top of the climb at 25, the route is 90% uphill or false flat (road that appears to be flat, but is, in fact, moderately up). It is the kind of false flat -- so persistent -- it may cause you to wonder if you have a flat tire or some mysterious mechanical problem causing rolling resistance.
As we approached the less deceptive climb to the top of the mesa, it looked more threatening than I recalled from seven prior Tours de Acoma. Part of my apprehension was knowing we had accepted a push from Nick last year to reach the crest. Perhaps I'm stronger this year? ALS don't work that way, hombre. If it had been even last month, there would be reason to wonder. But the team was, as usual, prepared. Nick had worn a running-friendly shoe. There was a plan to get his bike to the top.
The hill has four distinctly different gradients, 5%, 9%, 12% and 10%, respectively. When we hit the opening section, Captain Dan began working slowly through the 30 gears at our disposal. It didn't take long before we reached the granny gear. We hadn't even reached the second section. We dug in to spin for however long we could continue moving forward. The geology on display from my perspective on the first section was stunning. I tried to take it in. I guess I succeeded because I'm sitting here remembering vivid pictures.
By the time we passed through 11%, our speed dropped below three mph. At 12%, I could feel the momentum pulse with each power stroke, as the tandem threatened to stall on the upstroke. About half the other riders around us were walking. We were not gaining on them. 2.5 mph. The only person we passed looked like she'd had half a bottle of rum and stayed up until 4 am. Gambling.
I know Nick was beside us the whole time, and some of the rest of the team was with us, but I have no idea who because I was in a bizarre mental zone. Possibly the most remarkable thing was how Nick and the others stayed upright at 2.5 mph, the speed of a geriatric pushing a walker through Wal-Mart.
We made it! Every stroke, every vertical foot. It was not beautiful or impressive. Except to us. If the tandem had self-destructed then and there, it would have been a successful venture.
From the summit of the mesa we mostly coasted to the aid station at mile 27. We poured in my food and water (too much food, I would discover), fixed the headrest (not really, I would discover), and generally enjoyed the break after dominating the climb. The second half of the long descent was lovely, but I was beginning to feel the effects of overdoing it on the food. By the time we made the left turn on Old Route 66, I felt like I might hurl. Also by then, it was obvious the headrest adjustment had not done the job. Stop to fix it? Hell, no. This is a bike race!
The final ten miles were right into the teeth of the wind, but the team gathered around us and carried us to the finish like the Egyptian Boy King. Our official time was 30 minutes faster than 2013,and our riding time was 16 minutes quicker.
Will we be back in '15? Of the problems on the table today, the one most likely to take me off the bike is the dude pressing his thumb into my throat. I'm having more trouble swallowing, which I fear is related. I just woke up from a nap, during which I kept being startled by a sense I was about to swallow my tongue. Good thing I'm having more trouble swallowing, or I might have succeeded, huh? Again, I bet there is a connection. We'll figure that out another day. Today, we climbed the mesa above Acoma. Oh, yeah.
Days 1533, September 20, 2014. Tomorrow is El Tour de Acoma. We are plenty prepared for the 50 mile event. The big questions are: (1) How will we be without John Blueher? John is the "Big Toe" of the operation. He keeps us balanced, to the extent we are organized, that is John. John has been extremely sick for almost two weeks. He came home yesterday, but a 50 miler is not in the cards this week. (2) Will we make it up the hill? There is one significant climb right around the midpoint. The vertical is only 450 feet, but it is short and includes a section of 12% gradient. (3) Can we go faster than last year? There are several reasons we might be able to, but one big reason we may not. (4) Will Tribal Police remember Paul from last year?
Days 1531-1532, September 18 -19, 2014. El Tour de Tucson is two months from this weekend. 111 miles. We did it in 2012. A predicted (and actual) flood scared us off in 2013. Jean said it first: "Tucson?" So we are thinking about it. This weekend we rode 64 miles as part of thinking. The results were ambiguous.
But, speaking of thinking, this is a head scratcher. Melonie Dawes was sent by a benevolent power to take care of me. Same with our nephew Nick Pisano, but he's our nephew, so there's less of a mystery about what brought him here. Melonie just appeared.
One day last month, she mentioned El Tour de Acoma, the 50 mile ride/race we will do this week. She said she was thinking about doing it with us.
Mel is not a cyclist. She is an athlete, but you don't just start riding and do a 50 miler like a month later. I remember feeling a little sorry for her when she told me she had ordered shoes and shorts because bike stuff is so expensive.
She borrowed one of Anna O'Connell's road bikes. Even Jean's would not suffice because Mel has never needed to duck to go under a tree branch that was more than five feet, two inches above the ground.
She joined us for a 16 mile ride one afternoon two weeks ago. At about two miles, the path makes a 90 degree turn right after a half-mile section we typically roll at 21 mph. I looked over my shoulder to find Mel. She was nowhere to be seen. That was bad.
I was about to signal for a stop (I am regularly misunderstood, but not on this one -- I jam the pedals to a halt and spin backwards), when I heard Mel's voice. I hadn't been able to see her because she was right with us.
Just before our turnaround point, we cross a bridge. Same drill. Same result.
"Zero", was the response from one of the gang when we were back in the front yard and I asked "if I had predicted Mel would ride like that, what odds would you have given that I would be right?"
As we wrapped up in the driveway, John asked about plans for the Saturday ride, two days ahead. We agreed on a 50 mile trip. Mel walked up. "What time?" Seriously?! This had been her first road ride. From my incredulous tone, you can probably guess how the 50 went for Mel, and you are right -- she was fine.
But I'm not finished with incredulity. Mel wanted to ride again so soon because her first bike shoes would be in and she wanted to break them in.
How Works Bike Shoes. The soles of bike shoes are rigid to make the transfer of power to the pedals more efficient. We bolt a piece of metal or plastic to the bottom of the shoes right under the ball of the foot. This "cleat" snaps into a spring-loaded part of the pedal, and the direct connection between the human and the machine further increases efficient power transfer. It also guarantees -- 100% -- the rider will pull up to a stop sign or light, forget to twist out until it is too late and tip over on the pavement. And -- again 100% -- at least ten drivers will witness this and chuckle at or audibly mock the rider. Unless you know how pedals work, it looks like an impossibly dumb mistake. Remember Artie Johnson tipping over on a motionless trike on Laugh-In? That is exactly how it looks.
In the first ten miles, Mel was having trouble with her shoes. Tim Holm dropped back with her. We stopped when we reached the bike path that runs along the Rio Grande.
Mel's problem was apparent. She had the shoes and the pedals, but no cleats. So her smooth, rigid soles were sliding randomly around and off her metal pedals. Dan put wads of duct tape on her shoes to provide a modest coefficient of friction, and Mel rode the remaining 40 miles.
A week later, Mel joined us for 64 miles. This time with cleats.
Mel is ready for Tucson.
Days 1529-1530, September 16-17, 2014. Twice in only a couple weeks I have been inspired to write a "how I got here" story with music as the trigger.
Jean bought tickets to see Alabama (concert tickets, not airfare) for my birthday. The band's most popular tunes are on several of my playlists, so Jean knew I enjoyed some of the music. She doesn't know Alabama was the soundtrack of the summer that put me in Albuquerque. I had sort of forgotten myself until Friday night. This is how it went.
1983. The Savages of Washington won the Super Bowl. Despite having the four-time NCAA Player of the Year, Ralph Sampson, the Cavaliers of Virginia managed to wash out of the Tournament early again. I completed my first year at UVA's law school.
Highly-ranked law schools sometimes play games with class rank on the theory that the number one student at The Odessa Rendering Plant and College of Law and Stuff could not even get in at Yale. Don't know whether it's true, but I heard Yale grades were "Pass" or "Fail". In Charlottesville, we had a "B-Mean", and no published class rank. With the B-Mean, 60% of students in every course received from B+ to B-. It was a perfect bell curve, so 20% received some form of an A, and 20% received C+ or worse. For a student in the fat part of the curve (like me), all you could know was you were somewhere between the top 80% to the top 20% of the class. This frustrated some students who wanted more information. I never had a sense that I would benefit from looking behind the curtain.
Most law students seek out a prestigious clerkship with a respected law firm for the summer after first year. I think the B-Mean is less confounding to law firms than I had expected. The offers I received were few and not impressive.
During this time, my father was a Colonel in the United States Army Corps of Engineers. He was building a military city in Saudi Arabia. "He was building" sounds like an important role in a ground-up project that would become home to 80,000 Saudis when it was completed. It was. Dad was called the "District Engineer", which made him the following to every person in the American compound: Commanding Officer, Mayor, Pope, Police Chief, Director of the FBI, CIA and ATF, Superintendent of Schools, and President of the Neighborhood Association.
Who knows how he swung it, but he found a way around the nepotism policy and got me a job in the legal services office. Complete mystery.
What does this story have to do with Alabama and Albuquerque?
New Mexico was not on my radar. The Al-Batin Engineer District had a very large contingent of people from the Albuquerque District, including my boss and Alex Trujillo. I never asked why there were so many people from Albuquerque; but I sort of assumed it had something to do with the similarities in desert geography. Until I saw a photograph of the Sandia Mountains on Tom Olsen's office wall and one thing led to another.
Also, there were about two dozen college aged kids in the compound that summer, including Theresa and Kathy Trujillo. Theresa was a volleyball player and Kathy was a basketball player at UNM. Kathy and I went running most mornings before the temperature reached 100, which meant around 5:00.
By the end of the summer, Albuquerque was definitely on my radar, and the Trujillo family even offered to let me stay in their home in Albuquerque if I wound up in New Mexico for the next summer. Which is what happened.
Weekends in Saudi were not the same as in Northern Virginia. We took several trips to the nearest city, Jeddah, a quick 12 hours away over two-lane highways with no speed limits. It is a coastal city on the Red Sea, with unreal scuba diving. The King had his summer castle high on a mountain overlooking the Sea.
The thing to do on weekend nights was go to the city center market. It was a place where you could buy anything. Food, gold, clothing, carved camels, hookah pipes, brass camels, watches, actual camels, home decor, diamonds, musical instruments, soccer balls, and... Pirated/bootleg/home made cassette tapes, including every track ever cut by Alabama.
I bought the whole Alabama catalog for about the cost of a pint of crude oil.
I learned to play a handful of the songs on my guitar, but mostly I played the tapes nonstop all summer.
By the time I went home, I was about done with Alabama, and the less-than-studio-quality tapes were toast anyway. The Alabama tunes that made it to my iPod were the ones you know. At the show on Friday night, the group rolled out a fair number of numbers I literally had not heard since I was in Osama bin Laden's homeland.
Jean speculated the big grin pasted across my face was my reaction to the residual musical talent of the band (which was what you would expect from a household name act reduced to playing at a New Mexico casino, with plenty of tickets available at the door), but the truth was the music was basting me with memories of the summer 31 years ago when I hatched the plan to become a New Mexican.
Here's the part about ALS. I can't speak with enough volume or clarity to tell my wife why I was enjoying the mediocre music so thoroughly.
ALS sucks, but remembering more of the random pieces that had to fall into place to find the love of my life? That doesn't suck.
Days 1525-1528, September 12-15, 2014. The Boneless Chicken Ranch.
A classic Gary Larsen "Far Side" cartoon.
And also the scene in our bedroom when Nick was helping us get me in the bed one night this week. It wasn't unusually late. I wasn't particularly tired. But during the trip from the living room to the bedroom I felt suddenly and thoroughly exhausted.
I could barely control the chair. Once I was parked outside the bathroom, I was worthless. I repeatedly bit down on the toothbrush. My eyes would not stay open. I slid down my chair like -- well, like a boneless chicken.
We moved to the bedside. I couldn't focus on Nick. A blink of my eyes took much longer than the blink of an eye. And my right eye just stayed closed. When Nick helped me stand, my knees buckled, my head sagged and I was unable to straighten my back like -- well, like a boneless chicken. When Nick put me in bed, it was a scoop-and-pour operation.
I am pretty sure I was asleep before my head hit the pillow.
The next thing I knew, there was sunlight on the aspen outside the bedroom door. This time of the year, that means 9:00. Jean was standing next to me. "I have a confession", she said. Twelve years of Catholic school compelled her to fess up that she had doubled the dose of my sleep aid. Through the misty morning fog over my brain, I began to put two and two together. The boneless chicken ranch shed its mysterious cloak.
"I was just getting even for the gabapentin", which was a reference to a night I skipped a prior sleep aid, and kept her awake most of a night.
ALS will make good people do bad things.
Days 1523-1524, September 10-11, 2014. The neck.
You can stick it out. It can be thick. You can appear to not have one. It can resemble a pencil. And.... It can be red.
Whatever the characteristics of yours, imagine what a pain in the neck it would be if it just stopped working. Well, if it became less effective at doing its job.
That is what is happening here. The neck, I have discovered, has complicated and somewhat schizophrenic muscles. In the process of turning from one side to the other, there are several muscles that fire, relax, shorten or elongate, then fire again. Holding the head in one position is a less complex series of gas-on and gas-off reactions by the dozen or so muscles responsible for stabilizing the melon. Picture a seal balancing a beach ball on his nose. Keeping it in place requires a constant string of directional corrections. The ball is my head, and the seal is my neck.
The basic malfunction is the weakness is not symmetrical. Dig, if you will: when I eat, I have to lift my head off the headrest, take the bite, and lean back to work on chewing and (hopefully) swallowing. Due to the strength imbalances, when I begin to lift my head, my chin dips to the right and then pulls forward sideways. As I work on straightening my noggin, it does a shuck and jive while the seal beneath struggles for the balance point.
When I sit up straight, my head tilts unnaturally to the left and my nose turns to the right. I need to position myself or the person I'm talking to in such a manner that I can look to the right during the conversation.
On the tandem, I'm no longer strong enough to lift my head off the headrest. Some of the consequences of this are benign -- my head bounces playfully like a bobblehead. But four or five times a week the headrest delivers a shot to the skull that resonates like only one thing in my prior experience -- getting sacked by a future NFL fatboy, backwards over a lineman on his hands and knees so my head hit the dirt practice surface first (this happened in an era when high school quarterbacks -- especially backups who would never play unless, hypothetically, the starting QB was suspended for something involving weed, and the number two got hurt -- were not protected from hits in practice by the modern, and quite girly, red "don't touch this" vests).
This has evolved as a royal whine-fest, que no? May as well finish what I started. The neck is going to get worse. Something that is not getting worse: bike rides -- even with the head shots.
Days 1517-1522, September 4-9, 2014. A picture may be worth a thousand words, but this one still needs some explaining because there is a lot happening here.
Melonie and I went to the PT place to try a few things. The photo is the first one taken of me standing without support in over a year. Here are the highlights of what is not apparent from the pic:
1. The electrodes on my legs are red herrings -- not relevant to the standing operation.
2. The intimidating posture? My lats, traps, deltoids and lots of other muscles are retired.
3. The goofy look on my face?
A. ALS can cause funny faces.
B. Most of my facial muscles are engaged for the purpose of pulling up and back to assist in keeping my head from falling forward. You know, the ones not responsible for the goofy look.
C. Despite the ridiculous expression on my face, this was a moment that induced an ear-to-ear grin. Where, they then, are the pearly white teeth? We were warned ALS causes the over-production of saliva. I'm not that kind of doctor, but it seems to me the problem may be as swallowing becomes less effective, there is just more saliva hanging around. Whatever. My lips are closed because they are holding back a wall of water.
Next up: jump lunges.
Days 1513-1516, August 31 – September 3, 2014. The world is my Dynavox. When I type with the Dynavox, I look at a letter or word on the screen, and, if I hold my gaze for 460 milliseconds, the target pops up on the screen.
As my voice has faded, I have tended to look at things as a means of communication. It's not all that effective. To wit: In the bathroom, I locked in on the toilet paper roll because I was hoping for help blowing my nose. Next thing I knew my pants were being pulled off.
My technique needs some work.
The major adjustment we are making these days is I have started using the Dynavox for regular conversations. On the one hand, it sucks, because it is another thing separating me from normal. It's also unnaturally slow because I have to type everything. This is particularly true in a group setting because the conversation continues to flow. So, by the time my computer, in a drunken British accent, blurts out "that's what she said", everyone has forgotten the sentence that was the perfect setup for my cute quip, and the last comment on the table may have been something less ideal as the lead in, such as "I'm going to run to the bathroom".
These are small problems when stacked up next to being able to carry on a conversation without having to point with my nose or spell words one letter at a time (which is not working very well since my "G" sounds like "she" and every other one syllable word that rhymes with it, and "C", "D", "J", "P", "T" and "Z").
Click here for a quick clip of me introducing myself on the You Tube.
Days 1511-1512, August 29-30, 2014. Disclaimer: There is not much about ALS in this one. I will occasionally point out what I think about ALS (ALS sucks), but that is about all. But I decided to go ahead and write this because the story had been rolling around in my head for a couple of days when Abby showed me an essay she wrote for her English class. Abby's paper addressed the same philosophical issue I had been pondering. So I thought it was meant to be. So, if you read this and think to yourself "WTF?", you was warned. ALS sucks.
Are the decisions that have put us right here, right now really random, or is there a plan?
When I was taking a shower recently, I asked Nick to put on the Styx album "The Paradise Theater". A flood of memories came with it. The album was the soundtrack of my summer of 1981. ALS sucks. This was the time when a series of unrelated, seemingly inconsequential events changed the course of my life. Each piece of the summer had to happen just so, or I would not have wound up in New Mexico practicing law the day Jean Bannon first lit up my office.
I enrolled at James Madison University in 1978 planning to become a physical education teacher and a football and track coach. The weed-out courses of the PE requirements were the same anatomy and physiology courses the pre-med students had to complete. I smoked both courses. I blew the curve in the anatomy final, and the professor invited me to spend the summer of 1980 dissecting the leg of a fat man. He was dead, but I declined anyway. ALS sucks. With these classes out of my way, it would be a downhill run from there to graduation.
The first day of Techniques of Teaching and Coaching Gymnastics, however, did not go well. I don't recall the specifics, but I remember thinking "I cannot be in the same profession as that man [the professor]", and I used those words when I explained my need for a new major in a conversation with my advisor (who was also my track coach). It was a minor slip in tact, as Coach Witt was also a PE teacher; ergo, in the same profession as "that man".
A few days later, Coach Witt slid a purple brochure across his desk. It announced a brand new major, perfect for a teacher -- General Social Sciences. 18 hours of this, 12 hours of that... But the real beauty of it was there was no requirement for any courses to be at the 400 level. Or the 300 level. Not even the 200 level. The only requirement was "hours" (this omission was later corrected, but the four of us who signed up for the major based on the purple brochure were grandfathered, and we behaved accordingly). ALS sucks.
As the summer of '81 opened, I had completed my junior year, and was sporting a GPA of 3.9-something. That helped me secure one of the few, and coveted, summer school student teaching assignments. This was a key to my happiness for my senior year because student teaching was serious business, and would conflict with track frequently if I did it during the academic year.
I was assigned to Harrisonburg High School, and my supervisor was the football coach, who was known to take his supervision responsibilities very seriously. Not. The only day I saw him in the classroom was the first day of class.
Before the session started, though, I needed a place to live for the summer. I had tentatively lined up a sublease on an apartment southeast of campus, when I received a call from one of the professional staff at the office responsible for on-campus housing. He knew I was planning to spend the summer in the 'Burg because I was one of the dorm head residents, so he was my boss. There was a small off-campus residential building owned by JMU, and operated as a dorm during the academic year. The University's practice was to have someone act as the building's live-in caretaker for the summers. The person who had been set to live in Glick Hall had a change of plans, and I was offered the ultimate bachelor pad rent-free. It was essentially across a bridge from HHS, so I wouldn't even have to drive. ALS sucks.
The student teaching experience was nothing but fun. The class was American History for students with previous experience with American History, if you catch my drift. I gave a test based on The Eagles song "The Last Resort" (hint: The key was identifying the band's criticism of manifest destiny as a justification for westward expansion in the United States).
Midway through the summer, I had a visit from an ex, but possibly current or future girlfriend. We decided to walk from my building to a bar/sandwich shop. We ran into a guy I knew from classes. He was working on a set of practice questions from a book designed to help people prepare for the law school aptitude test (LSAT). I tried a few questions, which had nothing to do with law, and I thought they were fairly easy. One thing led to another, and we wound up placing a friendly wager on who could score higher on the test. I spent a weekend and $150 on a prep course. I registered for the test (also not free). And I won a $10 case of Schmidt's Light Beer, the least expensive beer available in bottles.
I knew nothing about lawyers, and I figured it might help, so I asked the person who would have the most complete information of all my friends -- the daughter of a JMU professor who was a lawyer. I don't mean the daughter was a lawyer; I mean her father. It was very enlightening.
The rest of the summer, I toyed with the notion of actually going to law school. Women I was seeing were most enthusiastic, which should have told me something, but I was pretty clueless about such matters. The one exception was Pam, the lawyer's daughter. That also should have prompted some careful thinking. ALS sucks.
Through the summer, "Paradise Theater" pounded the walls of Glick Hall. In early August, I rolled up the hammock, and moved back to campus.
Not long after the semester got underway, Pam's father, who was the pre-law advisor at JMU, called. He had seen the report of the LSAT scores for JMU students. He didn't know I was interested in law school. "Neither did I" was my response. I didn't tell him about the bar, the wager or the beer.
So, that is how I found my way to the University of Virginia. My ship's course that led me to New Mexico was equally rudderless, but I will spare you the details. ALS sucks. You probably have a similarly haphazard story about something in your past that has led you to right here, right now.
Is it all random, or is it somehow guided? Would you change anything in your past? What if it might have sent you down a different path? There are a few choices I'd like to have back, but not if I would be some place other than right here, right now.
Even if I could change whatever gave me ALS. You see, Jean made my life perfect. And then we had these kids, and perfect got even better.
Still, ALS sucks.
Days 1508-1510, August 26-28, 2014. Are you tired of hearing about the Ice Bucket Challenge? Through yesterday, the total has ballooned to more than $94 million.
My most recent post was, in part, an effort to give examples of how the increase in ALS awareness has played out. My writing was completely lame compared to this actual thing that happened between two human people I know. The following is from an email to me:
I challenged someone, and, because he's "enlightened," he went on a rant about how there's genocide and imperialism in the World and even though he "appreciates" what people are doing for ALS right now, he must politely decline my challenge because of some moral code he has to follow. I was furious and seriously called him out. Big, exhausting argument followed.
Sunday morning, while I was still really upset, I went to Starbucks with my son who asked me what was going on with my enlightened friend, and I told him about the disagreement and how I was trying to be respectful about my friend. I explained my friend's position and about how he's so disenchanted and disappointed with the world and worried about humanity generally, etc. My son listened intently and politely to every word. Then he looked up at me with big, grey eyes, very sincerely, slowly, emotionally, and confused, and he asked, "Mom, does he know what ALS is?"
I thought, "Exactly. That's exactly the point."
I wish you could have heard him, Doug. I wish you could have seen him. It was one of the sweetest moments I've ever had with my son. He actually gets it. And he's 9.
Now, that's what I'm talking about. Ice, ice, baby.
And, by the way, I sprained both my ankles yesterday when I jumped from a second-floor balcony to save my seven year-old nephew from drowning. Or maybe I was stoned out of my mind, thought I could fly, and came up with the other story to tell Coach. It was definitely one or the other. I'm a little fuzzy on which way it went.
Days 1503-1507, August 20-25, 2014. The Ice Bucket Challenge has raised over $70 million for the ALS Association. The past three days have brought in $9 million, $10 million and $12 million. ALS has never seen anything like this outpouring of generosity. Has any charitable cause? Even the Livestrong wristband campaign was nothing like this (and no one involved in Ice Bucket will turn out to be a dirty rotten son-of-a-motherless-goat, lying douche dirtbag doper). Not even the lawyers.
Speaking of which, my law firm, Modrall Sperling, took up the challenge this morning in our driveway. Before the chilly payoff, I used my Dynavox (which we now call the "Dynasaur" due to some performance issues) to deliver fair warning to the gang:
Thank you for coming out this morning. In the interest of full disclosure, I have a story you need to hear before it is too late to change your minds. During one of our trips to France, we were hiking near Mont Blanc. Jean offered to buy a Mont Blanc pen for me if I would jump in a glacial lake, which, of course, I did. I think the shock gave me ALS. This ice bucket thing is just a scam to give more people ALS to increase the pressure on Congress to fund more research.
I'm sorry you were sucked in.
But thank you for participating. You really have no idea how much this means to us. Through yesterday, the ice bucket Challenge has raised over 53 million dollars. If you would like to add to that, we can take checks to ALSA and we also can take credit cards. It's all tax deductible.
Now, game on.
Check it out on YouTube by clicking here.
Despite my warning, no one backed out. And then they tossed out a challenge to three law firms. When will the insanity stop? $70 million? $100 million? When a cure or effective treatment is I'm not going to do the Debbie Downer treatment on the Ice Bucket, but lots of people have asked me how significant this trend might become. The short answer: From a purely monetary standpoint, this is like selling lemonade to pay for a tank, but there is much more to the story than dollars.
The long answer, starting with some numbers from the United States:
Annual ALS Deaths: 6,000
Annual AIDS Deaths: 16,000
Federal Spending on ALS research (2010-2013): $195 million. FY 2014 budget is 33% less than 2010.
Federal Spending on AIDS Research (2010-2013): $12 billion (that is a "b"). FY 2014 budget is 20% higher than 2010 (if you are wondering, I am NOT implying we are spending too much on AIDS research; this is just to give you some context for what we spend on disease). Why is government funding for ALS research diminishing? Dunno. Ask Paul Ryan (R.-Wis.) or 16 other members of Congress who, through Friday, have taken the Ice Bucket but also voted for legislation that cut the ALS research dollars. That is messed up, am I right?
So, right now, the Ice Bucket has netted enough money to more than double the federal funding for FY 2014. That is a big deal. Seriously. Is it a game changer? Maybe. Perhaps one of the dollars donated so far will push the ball over the goal line. Even past mid-field would be nice.
Now, the rest of the story. Here is how ice bucket have completely altered the landscape. People are talking about ALS. In unprecedented numbers people are learning something about ALS. Elementary school kids are doing reports about ALS. High schoolers are organizing Ice Bucket events and their science teachers are talking ALS. In universities, ice and water is flying, and some student will be motivated by the unsolved puzzle to become a researcher. In medical schools, the study of neurology will pause when ALS comes up. Questions will be asked. Thought will be provoked. Theories will be woven. Mice will die. Progress will be made.
For people with ALS right now, the most important thing to come from the millions of buckets of ice and water may be that today, tomorrow and for a long time to come, people will understand just a little more about the disease.
You know, stuff like the dangers of cold water.
Day 1502, August 19, 2014. Now and then, I use this space to complain about ALS. Today is such a day. The topic: my eyelids.
My eyelids are controlled by voluntary muscles. ALS hates voluntary muscles. My eyelids are getting weak. So using them to weed the garden ain't happening. Why do eyelids need to be strong? Obviously, to open and close the eyes, and that's becoming sort of dorky. After around 5 pm, my right eyelid is slower than the left, which means it lags behind both opening and closing. Looks a little goofy, but that's way down my list of goofy things ALS has done to my body.
My complaint has to do with something less apparent. When someone wipes my eyes (when I shower, otherwise wash my face, or have an itch), the weakness means my eyes open too easily and the wash cloth, hand or other wiping instrument goes to the eyeball in a most uncomfortable way. To prevent this, I have to be paying close attention, and, in advance of the start of the wipe, slam my eyelids together with unnatural effort and force. This frightens whoever is helping me because I make a face like someone has thrown acid in my eyes.
I will be grateful if someone would print this and drop it in the complaint box. Thanks.
Day 1501, August 18, 2014. The quads Damian Calvert once (jokingly) called my "pillars of doom" are still packing. Occasionally. Our recent rides have been fun, but pretty mediocre in terms of time. Not Saturday.
Captain Dan and I left the house with John Blueher, Paul Mohr, Nick Pisano and Jean. We were typically un-prompt, departing for our 10:00 ride at the stroke of 11. Our official excuse: The alarm did not go off. The truth: the alarm did not go off.
While we staged the ride like a herd of turtles, the ride itself was smoke. On the outbound flats we were holding 20 mph almost effortlessly. On the return with a light breeze in our faces, we held 19 with or without someone giving us shelter from the wind. Early this week, Paul and a talented craftsman, Jason, who works for GivMohr, rebuilt the network of straps that keep my legs under control, and they are dialed in tight. The boys kept my fuel consumption just right, and the only discomfort was my toes caught on fire with about two miles remaining. Hot feet is nothing new on a bike. On long rides, the pressure from pedaling reduces circulation in the feet, making them more susceptible to temperature changes. On a hot day, this leads to hot feet. When you add ALS to the mix, a little atrophy in the feet means less insulation and toasty toes even sooner.
At about mile 48, the little tricks I used with movement of my toes were no longer effective and I could hardly apply power other than pulling down with my hamstrings. The shoes came off immediately in the front yard.
So our time for the ride was 2:53, which is an average of 17.1 mph. Three years ago when I was still on a 15 pound bike, I did the same ride in 2:36. For Dan and I to go that fast on 71 Pounds of Steaming Recumbent Tandem Trike Funk is as impressive as Mike Krzyzewski's hair is immovable.
Day 1500, August 17, 2014. Got ice?
We have less than we did before this stunt.
Check it out on The YouTube by clicking right here. Psych. Click here.
If you are doing the ice bucket challenge, why not give to the New Mexico chapter of The ALS Association? Here's a link to do that through your friendly Oso High website.
And, if you use this link to give to ALSA, you can earn Oso High swag like so:
Oso High t-shirt: $100 gift to ALSA.
Oso High workout t-shirt: $250 gift to ALSA.
Oso High bike jersey: $600 gift to ALSA.
Go get some ice and a bucket!
Day 1499, August 16, 2014. Graduation day.
I graduated from swallowing school this week. If you are Tim Holm or otherwise inspired to make a smartass comment about that last sentence in the guest book, please hold that thought. I'm trying to maintain our PG-13 rating. For about a month I have been seeing a speech therapist who has been applying electronic stimulation to the muscles in my throat. Wednesday we repeated the x-ray video swallow study, and the muscles are working better than a month ago.
For now, my swallow has been declared "reasonably effective and safe", at least for my current diet of chewing-optional or pre-chewed food. You know, like a baby sparrow or Alicia Silverstone's son. Except we use a food processor. Alicia chews it up and spits in his mouth. I'm totally serious. Google it.
Reasonably effective and safe is a win.
Days 1496-1498, August 13-15, 2014. Mark Rypien was not a blue chip draft pick when he came to the NFL. He seemed destined for a career as a journeyman backup quarterback until he more or less fell into a starting role with the Savages of Washington [I feel like that is less offensive than "Redskins"]. In 1991, he had a season no one saw coming. Almost 4,000 yards passing, 28 touchdowns and only 11 interceptions. The Redskins won the Super Bowl, and Rypien was the MVP. He never had a season remotely similar again.
So what happened in 1991? A friend speculated he made a deal with the Devil. He traded his soul plus the rest of his career for that one season. If this sort of trade is available, it might explain many things in the world of sports.
I have made a deal of my own, and it has brought a complete shift in my perspective on dying. The ink is quite dry on the contract, and I intentionally waited more than a month to see whether I would sour on my responsibility under the agreement.
Our standard weekday ride takes us along a flood control channel with inspiring views of the Sandia Mountains to the east, and ancient dead volcanoes to the west, where I used to ride my mountain bike. I have no responsibility on the tandem other than applying power to the pedals, so I pray for a while on every ride.
Whatever you might think about God, prayers and religion, there can be no argument that, if you enter into prayer willingly, with a point to make, and you are not pissed off, prayer (or something like it) is good for the soul if nothing else. Are prayers answered? Is anyone even listening? If the act of praying has a benefit, why press for an answer to those questions? In 1990, Jean gave me a small carved bear known as a "fetish". Many Native Americans believe fetishes have some supernatural power. The lore surrounding fetishes is particularly rich with the Zuni Tribe of New Mexico. The tradition began with stones naturally shaped something like an animal. The Zunis believed such a stone, when cared for with respect, had certain powers depending on the type of animal it resembled.
The bear generally is believed to bring good fortune. Over time, the supply of stones bearing a resemblance to a creature dwindled [I'm filling in some gaps in the history here]. Facing this reality, and an undeniable need for economic stimulus, the Zunis grew to embrace carvings as possessors of the same super powers.
I carried my bear with me in a soft leather pouch, and I treated it in a dignified manner for over three years before my bear moved to greener pastures after escaping my ski jacket. In 1992, I was late for a deposition and I carelessly rolled through a stop sign. It was not my turn. As I waited for the police officer to arrive, I pulled the bear from his pouch and put it on the hood of my truck for a little chat. Was he napping? Where was my good luck?
Before the police showed up, it occurred to me the good luck may have been the fact neither the other driver nor I had been injured. Indeed, in any situation, an outcome less severe than death may be very good luck. Prayer can be looked at in the same light.
The first time I created a prayer of my own was back when I was still running hurdles. I have often puzzled over athletes and sports fans praying at a critical moment in a game. Is that prayer right before the field goal attempt one in thanksgiving for the exciting contest? No. How about for the safety of all players as they collide with one another? Hell, no. Depending what color they are wearing, everyone engaged in a plea to the almighty is asking God, the baby Jesus or some other diety to make the little man with the funny name shank it miserably, or to allow him to drill it straight between the uprights. As if God could give a rat's ass who wins (unless, obviously, Satan's Team, the Dallas Cowboys, is playing).
So, when I crafted my track & field prayer, I didn't ask to beat the black dudes lined up bedside me (no prayer of that happening...); instead, my request was for "peace of mind and strength of body and spirit". If I had all that, the pieces would probably fall into place.
I have kept this one with me and it's one of my two regular tandem prayers.
The brilliance of the peace of mind prayer is that, as with the little bear in my pocket, it's easy to interpret what life throws at you in such a manner that your prayer has been granted. And that gives the foundation for a prayer of gratitude. And prayer itself has a healing effect, and so on...
Despite the amorphous nature of my usual request, I do occasionally ask for the home run. The second of my regular tandem prayers is a Hail Mary (appropriate, no?) for a cure.
Sorry I'm taking so long to get to the point, but I have arrived. I recently was presented with a situation begging for a prayer seeking specific relief. No compromise would suffice, and nothing short of complete relief would be acceptable. This is the setting for my Mark Rypien-like deal.
On the Friday before Memorial Day weekend, Jean was working on a matter involving the University. She had spent the day meeting with witnesses in the main administration building. With everyone gone, Jean was in a conference room by herself reviewing documents. Suddenly, she felt her blood run cold and she passed out. She was face down on the table for about ten minutes. When she came to, she used all the strength she could muster to call Jimmy. This was a perfect decision because James was driving and only minutes from Scholes Hall. When he arrived, Jimmy found a mess. Jean looked so bad, Jimmy apparently told the 911 operator Jean's "life status [was] questionable".
In the ER, the initial workup focused on her heart, but a blood test showed no heart attack and also revealed severe, acute anemia. She seemed to be losing blood in the hospital, as consecutive blood results indicated her hemoglobin was continuing to drop. I'm not going to explain how they figured it out, but the digestive tract was the location of the blood loss. The cause, however, was a mystery. The list of possibilities included cancer, advil, wine, an ulcer, a swallowed nail or perhaps a ninja star, and much more.
Jean's blood count was so low she needed a transfusion.
We discovered I was more trouble than I was worth at the hospital because I needed more care than Jean. During a ride, I decided to make a deal with God. Return Jean to her prior state of excellent health, and He can take me whenever it suits Him, with no whining or complaining from me.
The diagnostic process took a month to complete. The bleeding had stopped and nothing was messed up.
My part of the deal is stop resisting what is happening here. And, just like that, I have kept my word. I have written repeatedly "suffering comes from resisting the truth". I have had varying degrees of success living those words, particularly as they relate to what happens at the end of ALS. Not now. I'm into my second month of consistently being OK with the situation. I don't mean I've given up. I'm not quitting my therapies. I will continue riding. I'm not excited about waking up dead tomorrow, but I made an arrangement and I'm satisfied. I will continue offering up my request for a miracle cure, but I will do that without attitude or this-ain't-fair bitching.
It's hard to explain how the shift feels, but it is real.
Do I think God listened to the prayer, liked the proposal, and made Jean better? My faith isn't strong enough to say "yes", but it is strong enough to say "it doesn't matter".
Days 1492-1495, August 9-12, 2014. I used to enjoy bowling. When I was in grade school and high school I bowled in leagues. I was not very good, but I had fun. My league average was 165 at its highest. As an adult, I bowled infrequently, so I was a blind squirrel who finally found a nut when I produced a 215 sometime in my late 30s.
The last time I bowled was in the wondering stage of ALS. We didn't know yet, but the possibility was on the table. It was a spur of the moment decision, so I didn't have my ball with me. Yes, I own a bowling ball. Instead of having my initials engraved on it, my CB radio nickname adorned the orb. The shameful truth is there were a few of my teen years when I aspired to become a redneck. Our high school intramural team uniform was a flannel shirt and suspenders over jeans. We were the "Hungry Jacks".
As I said, I didn't have my ball with us when we bowled in 2010. So I used an alley ball. When I released the ball, it didn't smoothly escape; rather, it dropped suddenly to the hardwood near the end of my swing. I was worried this might be an indication my hand strength was failing. "It's probably the ball", I thought. But I was worried.
When we got home, I went to the garage to retrieve the "Virginia Snowgun" ball. I closed the door to our office and built couch cushions into a buffer for the closest door. Then I started rolling the ball. Slowly at first, but eventually very hard. It had been the ball, I concluded; therefore, I did not have ALS.
Thursday was date day with Abby, so we went bowling with Nick. It seemed pretty straightforward: have someone put the ball between my feet; aim the chair at the pins; hit the gas; stop at the foul line; if any pins remain, repeat.
In fact, it was far more complicated. The wheelchair has six wheels, two small wheels in the front and back, and two big drive wheels in the middle. The setup makes the chair insanely maneuverable; however, holding a straight line is a constant series of corrections. Under pressure -- like bowling -- this is a whole body endeavor.
First, whenever I engage any muscle group, ALS causes my quads to tense. Second, making the directional adjustments involves my triceps, abs, hands, shoulders, back and the right quad (to turn right, I have to press my thigh against the joystick). Finally, going fast requires me to jam the controller all the way forward. Keep in mind I'm simultaneously trying to maintain a straight line. The combined demand means I have to push down hard with my left arm, arch my back (neck, back, glutes,quads, calves and even my toes try to curl around the front of the foot plates), and shove my right arm forward.
I was sweating, my heart rate was up, and by the seventh frame, I was looking forward to the end of the tenth.
For a motion picture sample of the action on The YouTube, clickuez/clique/click aqui/ici/here.
I rolled a 66 (with the bumpers that prevent gutter balls). Next time I'm bringing the Virginia Snowgun.
Days 1479-1491, July 27-August 8, 2014. Four years ago today (the 28th) the nice man with a bow tie came back into our room and said "I've been looking for signs of anything other than ALS that might explain the symptoms, and I just don't see any other possibility." The world tilted a bit for us, and we wandered a few blocks of San Francisco in silence before we sat down to talk.
It seems like yesterday and an eternity ago. That day, because the doctor asked politely, I did 35 full squats on the balls of my feet with my arms parallel to the floor. I could have done more, but he said I could stop. I did that AND I had ALS. Three weeks later I rode the Leadville Trail 100. It wasn't my best time, but it also wasn't my worst. I did that and I had ALS. Today it has been more than a year since I took a step without at least one person holding me up. I have to repeat myself most of the time when I talk to Jean, and a few times every day, I have to spell a word (sometimes I have to repeat a letter or two when I'm spelling). The only thing I can do with my hands is drive the wheelchair, and I make right turns by pressing my right quad into my hand on the controller. When my legs come together, my knee bones (the medial femoral condyles, but who's counting) bang against one another. The padding once provided by each vastus medialis has disappeared because they are no longer very vastus. I could go on.
At some point in life, it is natural to begin a downhill slide of physical abilities that continues until death. For some of the characters in Friday Night Lights, that began after the last game of their senior seasons. Especially Buddy Garrity. For most people the top of the hill comes in the 30s or 40s. The back side of the hill is not very steep for the fortunate. In most ways I was very lucky. In track terms I was still getting faster in my late 30s. On the bike there is a good argument I was still on the way up when ALS called. I was definitely still improving with a chainsaw.
The back side of the hill has, for me, been very nearly a cliff -- steep in gradient, sharp corners, worse pavement than a New Mexico highway (except the one that passes by former governor Bruce King's ranch). But it has also been rich with experiences and love of unpredictable depth breadth.
Three years ago, Jean marked the one year anniversary of ALS by sending an email that read:
A year later, I have learned so many things. Nothing earth shaking, but lessons that help me live joyfully each (most) day(s):
Our children are even stronger, braver, funnier, smarter and kinder than I knew;
There is more sweet than bitter in the bittersweet moments in life;
That it is easy to fill a gratitude journal, even with MFCSDLPFALS;
That I have more Martha in me than I thought ;
That I still want my Mommy to be able to make it all better ;
That, though we hope they never need to, our children can comfort us in amazing ways - tender hugs, tight hugs, the sweetest kisses, whispers of "it's ok, " and knowing, sad glances;
That if you have time to worry, you have time to pray;
That work can be a healthy distraction;
That France is more beautiful the second time;
That my friends are beyond compare;
That men are capable of deep, abiding and joyful friendships, too;
That anger, while it may be therapeutic, costs precious moments;
That if you have friends who love you, or love to cook, or both, you don't need to - and your well fed family will be better for it;
That I can change a light bulb...and a flat tire;
That it's harder to have ALS than it is to watch someone you adore struggle to turn a page, brush his teeth, take a drink, roll over in bed, all with a smile and a wink;
That even with MFCSDLPFALS in our home, we all think we'll live forever (so I'm still putting too much half-n-half in my coffee);
That saying Our Father, the Memorarie and the Novena to Mother Teresa can help you breathe;
That living in Illinois would be perfect If all of our friends lived there and it had mountains;
That crossword puzzles are addicting and a much more fun distraction than work;
That sharing our burdens really does lighten the load;
That "you can sleep when you're dead" isn't funny anymore;
That I am capable of engaging in long, comfortable silences;
That watching hours of le tour de France next to Dougie is a great way to spend an evening;
That Citalopram is a miracle drug;
That we all grieve in different ways;
That loved ones show it in many ways - texting, calling, making banana bread, being a travel agent, running errands, grocery shopping, doing laundry, going to support groups, letting you have parties at their houses;
That Pauline was right when she said, in response to my anguished, "how will I do this?" - "you're doing it, every day, you're doing it";
That the internet/blog has allowed everyone who reads it to know what I've always known - that my Dougies has joie de vivre, is brilliant and is freaking hilarious;
That a breaking heart still beats, and for as long as mine does, it will be full of gratitude for the gifts and blessings my love, and each of you, has given me.
Same point I'm trying to make here, but with waaaaay fewer words.
It often seems to me I have received a ridiculous amount of -- for lack of a better word -- attention surrounding the general topic of my demise. When someone is treated to a big myocardial infarction, no one sees it coming, and no one has a chance for one last round of golf, quilting bee, happy hour, walk in the park, Cuban cigar, Jimmy Buffett concert, Star Trek convention, tanning salon visit, hug or "I love you". We have a friend who lost a work colleague after a bee sting two weeks ago. By comparison, I have been at the center of a four year lovefest. The recumbent tandem trike has over 6,500 miles on it, and we bought it more than two years after my diagnosis.
At some point, won't people think or say "enough already -- I gots things to do!" I hope she doesn't say it to me, but I don't think it would make Jean a bad person if she occasionally finds herself looking forward to having a simpler life.
Remember the part of Huckleberry Finn where Tom and Huck let everyone think they are dead, and they go to their own funerals to see whether anyone is sad (particularly Becky Thatcher)? Every now and then, I feel like my life is a combination of that with the movie Groundhog Day. Except I never use an alarm clock. Because I have been able to experience retirement.
Days 1473-1478, July 26-31, 2014. Another trip around the sun. To loosely quote the philosopher Chapin:
Just today I had my birthday,
I made it -- 54.
Mere mortal, not immortal,
not star-crossed any more.
I've got this problem with my aging
I no longer can ignore.
A tamed and toothless tabby
can't produce a lion's roar.
I have taken some liberties, most notably Harry only made it to 34. But I have also lost the roar, if I ever had one. Jean likes to ask people "if you didn't know how old you are, how old would you think you are?" Before ALS I usually said I felt like I was in my middle to late 30s. Now I say "90". This morning I wasted a perfectly good hour taking the "Real Age" test. I figured the people who write such a test must be the experts, right? I answered the questions truthfully. Let's just say they didn't ask the right questions. I am actually only 57.
So the birthday plan was a long ride, a long nap and dinner. Michael Donovan and I share a birthday. Michael had the idea to ride twice my age, so 108 miles. I decided it was time to start acting more my age, so I agreed to ride 50 (if I had done the Real Age test before the ride, I would, of course, have agreed to 57).
Undaunted, Michael dragged himself out of bed at 4 a.m. and put in 60 miles before 9:00. Then we all rode 50. If you followed the math, Michael rode 110 miles, and everyone else -- John, Dan, Nick, Paul, Jean and Doug -- rolled 50. Well, except one of us who had an extra cup of coffee and met us after 10 miles.
Back at the ranch, I got the nap. Then we had a big dinner and even a petite serving of Le Tour de France.
We also had the whole weekend with my two oldest friends in the world. Trip and Divah Sommers and I met when we were 13. Back then, Divah had a different last name. Eighth grade through our graduation from James Madison University. They married less than a month after our last final. I was Trip's best man. I gave a toast. It was my first taste of champagne. The newlyweds got an apartment. Trip got a gun and a badge. I went to law school. Trip got a different gun and badge. They had babies. Trip seized a cargo ship filled with dope. I worked in air conditioning. I finally found Jean. Trip learned Spanish and convinced Colombians he could get their cocaine to the United States. Jean and I had babies. Trip wore camouflage and face paint and used his M-16 on an anaconda. I worked in air conditioning and needed a caffeine jolt around 2 in the afternoon. Trip met with leaders of foreign law enforcement agencies who had blow and drug money in their pockets. I coached hurdlers and little league. Trip became a senior official in a massive federal agency that does unbelievable things we never hear about to keep the country safer. I got ALS and retired. In a little over a week, Trip will get his turn at the retirement thing.
So, it's pretty obvious how similar our journeys have been. This is probably why every time we get together, it feels like no time has passed since we last saw each other.
Days 1469-1472, July 22-25, 2014. Good news and bad news from doctors.
Good news first. Because of the hoo-ha with Dr. Youssof at UNMH not wanting to see ALS patients (after she tells them they have ALS), we have had to restructure the care for various important parts, such as my lungs. This has taken time. The pieces are in place now.
It had been eight months since my last comprehensive lung function tests. We had the testing done under the new doctor in early July, then saw the doctor to discuss last week. Dr. Choi doesn't think much of ALS. There are lots of diseases he likes better. Based on the date of my diagnosis, he did not expect much from my air bags.
He was surprised by each of the following: 1) While the swallow test was not normal, there was no sign of aspiration; 2) The chest X-ray showed only minimal evidence of historical aspiration; and 3) The pulmonary function tests revealed only minor deterioration since December 2012.
Dr. Choi ushered us out pretty quickly so he could attend to people who need his help -- like right now. Sweet.
Bad news. A picture tells the story pretty well even if you are not a doctor -- actually, even if you have never seen Gray's Anatomy. James received a stray foot to the hand while making a save in training.
Days 1467-1468, July 20-21, 2014. In light of what I wrote in the June 27 –July 6, post (which I actually wrote on July 14), the "ride" we had on July 16 was somewhat ironic.
July in New Mexico is "monsoon" season. Whoever came up with the term definitely did not serve in the Vietnam war. New Mexico's "monsoons", if they come, are 15 minute downpours in the evenings. For the first time in years, we seem to be having a decent monsoon pattern.
Well, on the 16th, we headed out for our evening ride. Before we left, there was a shower we all read as "it" for the evening monsoon. About a mile from the house we enter a bike trail running parallel to a major drainage canal. When we got there the roads were drying but the canal was a torrent. This meant there was rain to the east of us. Lots of it.
A quick comparison of the eastern sky to what it looked like when we rolled out told us the storm was moving toward us faster than we were riding. We stopped under a bridge to watch the water in the ditch. Good call. When we looked west, we could see rain marching toward us from that direction. A perfect storm. And we were parked at ground zero, where the two parts came together about thirty seconds later.
Being in the underpass was good but not great. The wind blew so hard the rain came in horizontally. A bolt of lightning seemed to strike the bridge, as the flash and the ka-boom were simultaneous. It was sweet.
Days 1465-1466, July 18-19, 2014. If you are working your way through Breaking Bad and you don't know how the relationship between Jesse and his girlfriend/landlord/tattoo artist, Jane, ended, STOP READING NOW because this entry is about aspiration.
If you have already seen it or if you have no interest in the show (really?), you may know or remember there is a high risk of aspiration when someone has a bunch of heroin and then falls asleep on his or her back when he or she might hurl. Aspiration is literally inhaling your current or former food.
ALS people are often at risk for aspiration if their swallowing is compromised. Mine is. It's been that way since 2011, when a piece of pizza got caught in my throat, which caused my airway to constrict to protect itself. This made it immediately difficult to inhale. We thought I was choking, called 9-1-1, and then the pizza flew across the room.
During the panic, I tried to get Jean to Heimlich me, but the 9-1-1 operator stopped her because he could hear throughout my chorus of "WEEEE-WEEEE-WEEEE" air was getting into my lungs. He warned Jean the Heimlich could cause me to choke for real. While she was probably tempted, Jean nonetheless decided against the Heimlich.
When we talked to my doc about it, we were told the problem demonstrated I was having swallowing issues, but was not a serious threat because, if it ever got real bad, I would just pass out and the spasm would quit. I've lost track of how many times this has happened since the night three years ago, but it has never been all that pleasant. And, as the swallowing has deteriorated, things get stuck more frequently. Lately, I have become convinced my swallowing -- not my breathing -- would be the first vital skill to be kaput. It has been much more difficult to swallow over just the past few months.
We saw a pulmonologist last month. On the topic of aspiration, he he said simply "you have been aspirating". My new occupational therapist recommended a barium swallow test, which we did yesterday.
It wasn't a fulfilling experience. The doctor was about 20 minutes late. He apologized to the x-ray tech and the speech therapist, but not us. He didn't even introduce himself to me. On the upside, the x-ray tech looked exactly like Flash Gordon. The old one in "Ted". That part was completely awesome.
So I drank a series of increasingly viscous liquids laced with barium, then yogurt, and, finally, a bite of a pancake buttered with barium. I had no problem believing it was not butter. There was no aspiration. My swallowing was not normal ("inefficient", according to the speech therapist -- I think the doctor may have been playing Words With Friends), but it was a big deal there was no aspiration.
So, now I'm going to a speech therapist five days a week for a month. She is attaching electrodes to my throat, turning on some juice, and watching while I eat. Hopefully, this will make my muscles called the "anterior and posterior swallowers" stronger and more better at their jobs. If this works, it will probably be longer until I have too much heroin, fall asleep on my back, spew my veggie shake straight up, and then suck it right back into my lungs.
What will they think of next?
Days 1463-1464, July 16-17, 2014. There's more than one way to skin a cat. When I met my new occupational therapist, she asked what goals I had for therapy. I hadn't thought of it in this context, but I'm quick on my feet even when I can't actually get on my feet. 1. Hug my family. 2. Squeeze a hand. 3. Operate the buttons on my wheelchair. I figured that would keep us busy even if she was really good. I also figured there would be a picture of the two of us on the front of every newspaper in the world if she could make any two of the three happen.
I'm trying to be more consistently realistic about where this is headed, so I didn't really take myself seriously. Annandhi didn't know I was kidding, and she went to work on number 1.
Last week, she delivered.
Days 1454-1462, July 7 -15, 2014. Remember the Titans? I do.
We have been watching old family videos recently. I had that calendared for my 80th birthday, but...
A few years ago we boxed up our tapes and sent them to our nephew Kevin West who has a digital imaging company. He put everything on DVDs, including a handful of silent Super 8 movies from a camera I bought with paper route money when I was about ten.
The DVD with the Super 8 footage has a long sequence taken from about rib-high on a bunch of Titans at Gettysburg College.
My history may not be totally accurate, I have done absolutely no verification of what follows, and I was eight to ten years old when the most important of this stuff happened, sooo... My parents divorced when I was 8, and Mom and I moved from Texas to Virginia, where Mom was a teacher at Hammond High School. Mom became the faculty sponsor of the pep squad, so we spent Friday nights at football games. This was fun for me, and convenient for Mom, because she was dating the head football coach, Bill Yoast. He was a tall, soft-spoken southerner. In his mid-40s he was still cut like a collegiate gymnast, which was on his resume. Yoast was also already a local football legend, producing a powerful and perennially feared program from a small and demographically challenged talent pool.
In the City of Alexandria there were three high schools. Hammond was saltine cracker white, speaking bluntly. George Washington was almost as pervasively African-American as Hammond was white. TC Williams was the new school in between two very different worlds, with a student body reflecting the same.
There were no racial tensions at Hammond or GW, but when the two got together -- like for a football game -- it wasn't very pretty at all. Night football games were banned after a memorable game between Hammond and GW, when flaming things were hurled at departing Hammond buses.
Yoast's Admirals ran the table in the fall of '69 right up to the final week meeting between Hammond and the TC Titans, coached by the bombastic Herman Boone. TC had been Yoast's Achilles heel, and the Admirals left the game with a 9-1 record, a heartbreaking end to the regular season, especially in light of what was coming for the next season.
A United States District Court ordered the City to desegregate the schools. The City thumbed a very white nose at the Court, and that did not go over very well with the federal judge. The next step was going to be the court taking over the schools, and that was averted have by the skin of the school board's teeth. The plan ultimately endorsed by the judge consolidated the three high schools, sending all juniors and seniors to TC, and splitting and integrating the freshmen and sophomores between Hammond and GW.
Think for a moment how this would affect varsity sports. Yeah, the potential was in place for a royal mess.
This is the setting for the Denzel Washington movie "Remember the Titans". Washington played Boone, and Will Patton played Yoast. The selection of Boone as head coach for the consolidated football team was bitterly controversial and packed with racial issues. I remember hearing actual grown-ups refer to Herman as "Boone the [racial slur rhyming with 'Boone']". Bill became the defensive coordinator, and the coaching staff set about the significant task of figuring out how to merge three varsity football teams into one. The first test came at the team's preseason camp at Gettysburg.
With all that was going on in the program, I don't know how he managed to swing it, but Yoast was able to take me to the camp. During the week, it became very clear the team would be something special. It would have been laughable if the team had not been dominant. There were more than 30 players who had been starters the season before at the various schools.
My favorite was a strong side linebacker, Gary Bertier, from the Hammond team. He often brought me to his table in the dining hall during camp. The giant people around me were so numerous I had a difficult time keeping track. At Hammond, there were five or six big guys who were obviously linemen, but at this camp, there were tables filled with them. Same for every position.
I don't remember race being an issue, but I was only ten. What I do recall seeing was guys worrying out loud about how the coaches supposedly played favorites with the players who came from their respective programs. What a shock, right? I also remember thinking Boone would realize he was over his head, and just hand his whistle to Yoast. Hey, I was ten.
I'm not going to bore you (further) with my list of factual inaccuracies in the movie with two exceptions. First, there was not much drama on the field during the season. The games were not close. TC was a three-headed monster having its way with smaller and less experienced schools and football teams. That Fall, every opponent was outmatched on and off the field. The school board seemed to have written a blank check to the Titans. We even flew to Roanoke for the state championship game in November.
The final game was the only one I saw all season from the stands. On the sidelines, I had no appreciation for the sheer number of players on the squad. By comparison to Patrick Henry High, it looked like the Titans' opponent had left half the team in the locker room with juice boxes.
The second fact check is the movie showed Gary Bertier getting paralyzed before the championship game, with the team drawing its "win one for the Gipper" motivation from Bertier. The only play I remember specifically from the game was near midfield. Henry ran a counter that sent the entire student body to the weak side, away from Gary. The quarterback faked a handoff to the weak side, pivoted back to the strong side and handed the ball to the second running back. Bertier moved like he had been in the Patrick Henry huddle, shooting the gap left in front him, and meeting the running back at astonishing speed. It sounded like a shotgun blast.
Bertier was bound for greater things than the state championship the Titans earned that day, but a series of judgment errors put his car into an immovable object early in December, and he lost the use of his legs. The last time I saw Gary was in his hospital room with Yoast, a couple other coaches, and two Washington Redskins legends, Sonny Jurgensen and Sam Huff. Ironically, Bertier was killed by a drunk driver a few years later.
The next school year the integration plan was implemented in the elementary and middle schools. It was a mess. I was lucky in that I got to attend my neighborhood middle school, but the busing scheme did not have the effect the law envisioned. True, kids arrived every morning from all over town, but the classrooms were only integrated on the margins. Based on standardized test scores, my class was divided into the Schooners, Clippers, Galleons and Sloops. The Schooners were white, the Sloops were black, and the other two groups were a mix. The hallways and stairwells were a melting pot -- actually, they were more of a rancid gurgling cauldron.
I carried my arms crossed, with a notebook on one side and a textbook on the other to protect my ribs from random punches and elbows that might come from anywhere while I worked through the crowded passing periods. I limited my fluid intake before lunch, because a trip to the bathroom cost me my lunch money. Why didn't I leave the money in my locker? Because having no money was worse than having no milk with my bag lunch.
Were the black kids unruly animals? No. Stupidity was an equal opportunity character trait. Kids of both races lit the fuses. The runts like me -- I had my growth spurt two years later -- tended to be the punching bags. Being small and black was no easier than being small and white. At my school, it was undoubtedly more challenging for the black kids. Not only were they bussed halfway across town, but the crappy teachers from the old school came with them. To teach them. Nope. Not at all what the judge had in mind.
Eighth grade students were eligible for freshman sports at the high schools. This also didn't work out for the kids who were bussed to school because there were no activity buses to take them home after practice. This was, however, fun for me because I got to play for Hammond High. By that time, Bill Yoast had left the staff at TC Williams and come back to Hammond to coach the freshman and JV teams. And we were so good. Undefeated. It was all because of me.
Not really. I was a 5'2", 90 pound defensive end. Our quarterback was six feet tall and about 180. I was one of Bill's human victory cigars. I played when Yoast looked back and saw an otherwise empty bench. On the season I had no tackles. I'm actually not even sure I ever got in anyone's way.
I am the short one
After the season, Mom's years of careful management of her teacher's salary paid off, and we moved into a house outside the City. A couple years later, Mom and Bill split up. The last time I saw him was the Fall of 1977.
Yoast had gone back to TC. My high school, Chantilly, was only about 15 miles away, but the schools had little in common aside from an area code. Chantilly was rural and only beginning to fill in with housing developments. There was a corn field across the road from the school, and the shortest route to school included a dirt road. About a mile from our house is where the Confederate army staged before the battles at Bull Run and Manassas early in the Civil War, and there were people in town who behaved and dressed themselves, their trucks and their homes as if they expected General Lee to come knocking for volunteers any day.
For reasons that remain mysterious to me, Chantilly was moved to the TC Williams district before my senior year. Consequently, we played TC that season.
With only a few minutes remaining, we held a seven point lead. This put us in our "prevent" defense. I was a strong safety. Notice I did not say I was "the" strong safety. The prevent defense was used when we could afford to give ground, just not the big one. I was good at this because I enjoyed backing up.
I wound up in a pile (one I certainly did not cause) on the Titans' sideline. When I stood up, I was right next to Yoast.
So, that's my story about remembering the Titans. It doesn't really fit with anything else on this website. Or maybe it does. I wouldn't have thought about it if not for the old videos. I highly recommend you don't wait for the golden years to have a look in the video treasure box for several reasons including: 1. There are some great memories in there you have already forgotten. 2. You might not make it to the golden years, and you might not get any warning. 3. Adult diapers. 4. Alzheimer's. 5. The technology to view your ancient tapes will not exist by then. 6. Divorce (it happens) would rob the recordings of most of the entertainment value. And, 7, You might be one of those grumpy old farts sitting by the front window waiting to pounce if someone lets their dog pee on your grass.
Days 1444-1453, June 27 - July 6, 2014. One of these guys is a roadie. Guess.
Dude no. 1: "Look out there, man. Are you worried about that lightning?"
Dude no. 2: "Only if it's gonna hit us."
It was that sort of afternoon. Ugly black clouds all around; wind that seemed to come from every direction; and lightning streaking across the northern horizon, moving in. No one donned rain gear or suggested it might be a day to turn on Le Tour de France.
John Blueher, Dan Porto, Paul Mohr and Nick Pisano rolled out with me for a 30 mile ride. Except for Nick, we are well into our third year doing group rides. Even our nephew Nick has been at it over a year.
How lucky am I?
30 miles, cruising at 18-20 mph (on the flats, of course), dodged the rain and lightning, and watched the sky open about ten minutes after we pulled into the front yard.
Then we watched Le Tour.
There you have a solid afternoon.
Days 1441-1443, June 24-26, 2014. Dogs. Man's Best Friend, my ass.
Here's the truth about dogs. They will dump you like a steaming turd if you stop doing stuff for them. You know that episode of some cheesy Lifetime series where little Timmy is paralyzed when he gets hit by a train when he was trying to put pennies on the track to squish into unrecognizable copper discs (because it would be a federal felony to melt actual pennies), and he plans to sell them to a metal broker to raise money for kids in an orphanage (because Timmy found out there is more than one cent of copper in each penny), and his dog Millie never leaves his side and puts her head on his lap when Timmy is sad?
Well, it's a cute story idea, but it's also 100% USDA Grade A Pure BS.
Want to know what Millie would really do about the time she figured out Timmy's hands don't work and Timmy can't feed or pet Millie any more? Millie will show Timmy the paw. She might even occasionally hoist a middle nail in Timmy's direction.
I had dogs when I was a kid even though they were contraband in the apartments where we lived. I have owned between one and three dogs for the past 29 years. These creatures have been part of the family, not junkyard dogs. I pick them out, bond with them, train them, play with them, and make sure they are comfy at night. I'm an experienced doghouse builder -- my finest creation was a 25 square foot, adobe with saltillo tile floors, clerestory windows and a Spanish territorial tile roof. My dogs should worship my ground.
Over the ALS years, I have progressively lost the ability to take care of the two golden retrievers we own. As this has happened, the dogs have progressively become indifferent -- sometimes openly hostile -- to me. When I approach them, they initially appear to not notice. This gives way to a suspicious glare as I get closer. Once I'm near enough to reach out with a foot to pet them, they general heave an annoyed sigh and walk away. The only exceptions are when they are very tired a truly cornered. Even then, they often slither away, releasing a "harrumph" as they settle into a new resting spot. This all takes place without so much as a little eye contact.
Ever wonder what Fido would say if he could speak to you? You're probably imagining something sweet like "you're my best friend", or "I love you, man". Don't be fooled. I've seen the other side. The first thing out of your beloved pooch's mouth would be "what have you done for me lately, bitch?"
Days 1436-1440, June 19-23, 2014. Numbers. You can count on them.
Or maybe not.
I keep coming back to this topic because I don't understand what I'm seeing on the very smart machine I use at the rehab gym. Yesterday I did a 40 minute ride at 91.4 whatevers (the official unit of measurement for the bike). In March I hadn't put in that much power for a 25 minute session. Every metric that shows up on the screen is higher than ever (I started using the thing in September). As I've said before, that ain't how ALS works.
Meanwhile, there is nothing about the performance of other muscles that's similar. In fact, my performances on the tandem don't even equate. In September, our bread and butter ride, the 16 mile Balloon Fiesta Park round trip, was routinely three to four minutes faster than we are doing now. Come to think of it, although the tandem numbers are going the opposite direction from what I'm seeing at the rehab joint, the tandem numbers are also inconsistent with what is happening with the disease generally.
For years I have pissed and moaned about my voice. In September 2011, I delivered my retirement speech through a computer's voice because I thought my law partners would not be able to understand me. I was friggin Pavarotti back then compared to where I am now. Today, even people who are around me every day have difficulty deciphering the broken, raspy whisper that calls out from my throat. Five minutes ago, I had to repeat "please pour my cereal" five times for Jean. And I know in my brain there will be a time -- probably not far down the road -- when I will look back at where I am now as the "good old days". But, for all the perspective practice I've gotten over the last four years, I just can't see it that way.
Harry Chapin was a brilliant songwriter and entertainer. There have been better voices in your radio from time to time, but none powered by a more generous heart. Chapin founded an organization called World Hunger Year ("WHY?") in the 70s, and most of his fortune went right there. He died in the summer of 1980 when the VW Rabbit he was driving was hit by a semi. One of his most obscure tunes was about a young guitar player who had the heart but not the gift to make a life of it, a limitation he tragically did not appreciate. "... His voice is Chicken Little's, but he's hearing Paul Revere".
I apparently share the boy's self-assessment problem. All day long, the voice in my head speaks intelligibly to me. No, I don't have "voices in my head" in a sociopathic way where my brain might be under the control of evil forces; what I'm talking about is the thing that keeps cows from being able to compete with us for control of the commodities markets -- we think in words and pictures, while thumbless bovines contemplate images of food, poop and urine. Normal people -- including me -- have a constant stream of words flowing through their heads. Take a moment to listen to the words, and pay attention to the "sounds" - - it's your voice, no? So what I hear is my pre-ALS voice. All day. Often thousands of words between efforts to actually speak.
Before I open my mouth I compose what I will say. I use a technique known as "circumlocution" to substitute easier words for the words with tricky sounds. Here's a demonstration: since I have difficulty with hard "k" sounds, if I were about to speak the previous sentence, "technique", "circumlocution", and "tricky" would be ruled out. So would "substitute" (too many syllables). So I would probably try "I swap easy words for hard ones". The problem is, even the simple version of the sentence is practiced in my head with the old voice, so I wind up surprised by how the finished product comes out.
Here's the thing. Whether the issue is what is going on with the bike or my dismal prospects for a second career in opera, I have to stay focused on the positive. ALS is a pisser, but it is far from as bad as it gets.
Dig if you will, a picture. Saturday afternoon, we were lounging in the shade after Jean's first time out as the pilot of the tandem in many months. A neighbor was walking the hood. She stopped to chat. Jean asked "how are things at your house?" She responded "it's been a tough few months". Here's a summary. About three months ago, one sister was diagnosed with an inoperable, terminal brain cancer. She has about a year IF she has chemo and radiation on her brain. Meanwhile, another sister went in for a minor surgery. A lot went south, and she died. The loss was hard for the parents because, while they have lost some sons previously, this was the first time they had lost a daughter. Yeah, that's a rough few months.
Somewhere this week, people who are perfectly healthy will leave home to go do something trivial, and will wake up dead or as quadriplegics.
The prognosis for humans generally is frightening. Every day from the womb is one day closer to the end, but noone tells us how or when.
By contrast, ALS gives us a reasonable set of hints about both how and when the curtain will fall. Essentially, we become quads in super slo-mo, and then something bad happens. I have been on that path with eyes wide open to what the future holds for four years.
This, in comparison to other options that might take me out early, is a piece of cake. This realization is a foundation of what led to the first words I wrote for this website. I feel fortunate to still be able to embrace it so far down the road.
You might think by now, I would have become more efficient in my use of words to make the point. As Mark Twain said, "I didn't have time to write a short letter, so I wrote a long one instead".
Days 1425-1435, June 8-18, 2014. The Fourth Oso High Mountain Bike Race. Still looking for the final tally, but it looks like we will top $44,000 to the ALS Association! I have only ridden pieces of the courses we used, but the faces of the riders told me a lot about the part I had not seen. I sat by the finish, and caught some priceless reactions. My favorite: "Doug, please tell me that wasn't your idea". Like all mountain bike races worth riding, this one had features that scared everyone at least a little bit.
Damian Calvert scalded the pro race, despite stopping to fix some trail markings that had been vandalized overnight, presumably by Texans. Barry O'Mellin found a spot where markings were not adequate and we had no course marshals. He parked his bike, abandoning the Cat 1 race, and became a course marshal. This kind of stuff happens all the time -- I mean allll the time -- in road bike races.
It was a beautiful day, and a great excuse to ask people to give money to the ALS Association. Bite back!
Days 1421-1424, June 4-7, 2014. Oso High weekend! Lots of family and friends in Angel Fire to help with the mountain bike race. We are essentiality ready for the race (mostly because of the contributions of Sport Systems MountainTop Cycling, and my mom and Aunt Barb -- don't get me wrong, I mean lots of people did Oso much to help, but these folks took the bull by the balls and just handled it).
So, this gave me a chance to slack on Saturday, by which I mean ride. The peloton consisted of 2012 Paralympian Steve Peace and his suicycle, Abby's boyfriend Caleb Robinson and his -- shall we say "classic" -- road bike, Nick Pisano, John Blueher, Dan Porto and ALS Boy.
We somehow slipped in 20 miles between three or four thunderstorms without getting damp. Also, fueled by a tailwind returning to the start of the ride, the tandem hit a new all-time high speed of 43 mph. It was not designed for going that fast. I feel pretty certain about this.
Days 1415-1420, May 29 – June 3, 2014. Still tracking numbers. 92.4 kilogigawatthourspermeter. See April 1 for an explanation of this measurement. Meanwhile, seemingly everything else is continuing to slither toward a cess pool. So what's up with that?
Days 1410-1414, May 24-28, 2014. Dude! Roll a doobie; fire up the bong; spark one! I am the proud (sort of) holder of a medical marijuana card, which gives me the right to purchase and possess and use products such as "Purple Haze" (vis a vis the State of New Mexico only; it is still a crime according to the feds, but New Mexico decided to tell the DEA to kiss its ass, a move that seems shortsighted, what with congress having lots of money we could use in the Land of Enchantment).
So I went to my neighborhood dope dealer for a consultation and I selected a liquid cannabis. I never smoked pot because I was always either training for the Olympics or hoping to become a Supreme Court justice. This does not seem like an appropriate time in my life to go to The Gasworks to buy a roach clip. So I went with the liquid. The other choices included -- you know -- traditional puffable, brownies, cookies, goldfish, and gummi bears.
My consultant assured me the stuff would take care of my joint and shoulder pain, but I should should start low and slow. Two drops to start, and then work up to a half dropper.
Two drops. Nothing.
Four drops. Nothing.
Six drops. Nothing.
Half a dropper. Nothing.
A full dropper. Nothing.
Not even a craving for Cheetos. Maybe I've been high for years and I just can't tell the difference. Something tells me that's not it.
Days 1407-1409, May 21-23, 2014. Sports Update! Abby ran three events at the New Mexico State Track Meet on Friday. The 100 hurdles were first. She ran her fastest ever nine hurdles. There were, however, ten in the race. The tenth was difficult, and she faded from fourth to sixth, which took her out of contention for making the final. Next up was the 300 hurdles. Abby has an unusual talent for this event. The 100 hurdles is a short enough race for better runners to take the same number of steps between each hurdle, and that means the athlete leads over each hurdle with the same leg. Most people develop a habit before age three of jumping over things (like puddles) with the same leg going first. This means most people have a difficult time trying to hurdle with interchangeable use of lead legs.
This becomes significant in the 300 hurdles because the race is long enough to require the hurdler to use different numbers of strides between hurdles. The best way to make these adjustments is to have the ability to use either leg as the lead. I never developed that handy talent, so I managed to run 15 steps all the way around the track in the 400 hurdles. This meant I was prone to run up too close to the early barriers because I was fresh and my strides were naturally longer. Late in the race, I would have to stretch my tiring strides to make it to the hurdles. Not ideal.
Abby, on the other hand, can just run and hurdle with whichever leg comes up. She is as quick over the hurdle with either leg. I've been coaching hurdlers since 1995, and I've had only one athlete whose ability in this department was equal to Abby's. He was a Jamaican who ran for UNM in the early 90's, and came within a blink of an eye of breaking the school's record for the event. This means Abby can run the 300 hurdles not much slower than she can run a 300 without the barriers. This convenient talent almost got her to the finals, and it did get her a personal best time.
The Bulldogs' 4x400 relay had a rough day, although Abby's split time was her second quickest ever.
One more track season to come, and Abby has plans...
Jimmy has been training with a Professional Development League team, the Albuquerque Sol. "Sol" is Spanish for "sun", not an acronym for being out of luck. Just an FYI. Saturday night, the team played it's only exhibition game, and Jimmy's team came out on top of an offensive shootout, 5-3. Jimmy had several "sick" saves, which, coupled with the win, means he had fun.
Unfortunately, Jimmy will not be able to play the regular season with the squad because of a silly NCAA interpretation of a sensible rule.
Jean, meanwhile, spent a long weekend with three of her sisters hiking from the north rim of the Grand Canyon to the south rim. This is not for the weak. On the way up the south walls of the Canyon, the girls encountered a man who has run the Leadville Trail 100 (no bikes allowed in the run) preparing to be rescued by helicopter. The Bannons stripped his valuables, kicked him to the side of the trail so he would not be a hazard for other hikers, and continued to the top.
Quite a weekend. I rested after rides Monday through Friday. But I got winded just watching the kids.
Days 1404-1406, May 18-20, 2014. [Executive Summary: This is a long and not particularly interesting entry, unless you or a loved one has ALS and live(s) in New Mexico. So, if you would prefer to spend some time watching the latest on Le Cochon Grande (Donald Sterling), here is the essence of what follows: New Mexico's only ALS expert, to whom everyone who has or might have ALS is referred, no longer wants to see ALS patients after diagnosis, which means the only ALS clinic in the State is in serious jeopardy. For ALS patients, this threatens taking the "New" out of "New Mexico".]
I promised I would discuss how lots of people don't know much about ALS, specifically my fellowship-trained-State's-"expert"-in-ALS neurologist. Here's how this came up. In January I had a cold. Nothing fancy, just a virus -- the kind that runs its course in seven days if you don't go see your doctor, or a week if you see your doc.
It doesn't work quite that way with ALS if you have any significant compromise in breathing function. In December, the key measures of my pulmonary function were in the neighborhood of 70% of what is predicted for someone like me without ALS. That is not bad. I really had no symptoms to go along with the reductions. But when I got sick, all respiratory hell broke loose. In a relaxed state -- the sort of state you enter when you are in the process of falling asleep -- I could not inhale.
Dealing with this problem was a pretty high priority around here, so I sent an e-mail to my UNMH neurologist as follows:
I have not had any significant respiratory distress before last night. I have a cold,and whenever I relax enough to begin drifting off toward sleep, I feel like my airway collapses, and I cannot inhale. This startles me into a coughing fit, which sometimes turns quite violent (including several airway spasms).
Is this something CPAP or BiPAP can help? Or something else? Cough assist? If so, what is the next step?
I didn't sleep even a minute last night.
She responded by recommending I either go see my primary care physician (a great guy, but not an expert in ALS) or go to the UNMH Emergency Room, which is the most dangerous place in Albuquerque, and -- get this -- they don't have an ALS specialist on staff. Nor do they have a BMW mechanic in the ER. ALS and malfunctioning Beemers are infrequent issues at the ER, as it turns out.
I didn't understand. Could the ALS expert really be punting to people with limited or no ALS expertise? So I laid out the problem with what she seemed to be telling me:
Thank you for the email. I feel I don't know enough about what to expect from my lungs, and it sounds like UNMH may not be the place I should expect to turn for help.
The first 48 hours of the acute episode I'm just now pulling out of brought a frightening respiratory symptom that went away as suddenly as it appeared.
Is this symptom just below the surface and brought out by my weakened condition? If so, what is it, and how can it be managed when it reappears? Should I be considering a diaphragm pacing system?
It sounds like the frustration you are describing about the UNMH practices in this area mean that the most likely way these questions will be addressed is by way of an ER admission, the most likely result of which will be an emergent election between a vent or discharge to hospice.
Do you think I am misreading the situation? Thank you so much.
Her immediate response:
I think being under the care of a primary care doctor will help in management of these respiratory issues. Many of our patients don't have a primary care doctor, and therefore do end up getting their acute respiratory issues handled in ER or urgent care.
I did not hear back from the pulmonologist I spoke with at UNM, suggesting that they don't think these issues are under their purview.
I don't believe we know whether diaphragm pacing works yet. But it is available at some centers. There is a study starting at some centers in US to help determine whether it works and in which patients.
The following month, she provided more information:
i just wanted to clarify why i tried to make an appointment for you in pulmonary clinic. As a neurologist, I do not have the expertise to diagnose and treat respiratory problems. In most larger ALS centers, there is a pulmonologist who works closely with the ALS clinic patients to provide assistance. Since coming to UNM, I have tried to refer indivuduals to pulmonology to co-manage, but the appointment times often were delayed for 6 months. As you can see from the appointment we tried to schedule this week, the pulmonary clinic sent us a message that they were going to delay your appointment if you did not get PFTs and chest x-ray (ie, it was going to be hard to get the appointment quickly). In this context, out of desperation evolving over the years, I tried to address basic respiratory issues of our patients myself (like deciding when to recommend BiPAP using results of PFTs). Nevertheless, I relied on the respiratory therapist to adjust Bipap treatments, etc. I tried to explain this to Dr. Mark last week when he called to explain that you did not want to go to the ER.
As a result of what happened last week, I met with the vice chair of internel medicine, Lee Brown, who will try to look into getting us pulmonologist support for ALS patients. He will discuss this with his faculty to see if something can be worked out. In the meantime, if Dr. Mark, as an internist, can help with your respiratory management, then it may be that you do not need the pulmonologist consultation that we tried to schedule for you urgently this week. However, if you do decide to use bipap down the line, it would be beneficial to have a pulmonologist (or another physician knowledgable about Bipap) to co-manage this.
The short answer was "yes", my neurologist was kicking me to the curb. The ALS Association took up the issue in the next few months, culminating with a meeting at UNMH a couple of weeks ago. The bottom line: The problem is actually worse than I understood. New Mexico's only ALS expert doesn't want to follow ALS patients at all. Here are some highlights from the report of the meeting:
Along with the decrease in clinic appointments presented by the Neurology department, Dr. Youssof also stated that she felt many of the tasks she was consumed with in relation to the clinic were outside her scope of practice as a neurologist. Some of the examples provided were respiratory, Interventional Radiology/GI referrals for feeding tube insertion and management as well as wheelchair seating issues that our clients experience. Over the past five years, these referrals have been made through the ALS clinic with the recommendations and assistance of the other clinic subspecialties: PT, OT, Respiratory Therapy, nutrition and speech.
In other parts of the country these clinics are customarily run by an ALS neurologist who makes referrals in all the areas above, based on their team’s recommendations of the patients’ needs and the continued tracking of their symptoms and disease progression.
As the conversation continued it was clear that Dr. Youssof is willing to diagnose new ALS patients, but does not seem to want to or does not have the time for the responsibilities of the continuum of care provided by a Certified Center and a multi-disciplinary clinic. The recommendation made during our meeting was that ALS patients be followed more closely by their primary care physicians (PCPs) and have referrals made through their offices. It has been the experience in our ALS community that many PCPs and even neurologists not specializing in ALS are unfamiliar with the specific and ever-changing needs of the ALS population.
At one point Dr. Youssof inquired why all ALS cases needed to be referred to her. As the neurologist of note in the state dealing with ALS it is a common practice for other neurologists to refer to her or to other larger ALS clinics in other states. When she indicated that she felt all neurologists know about ALS, Dr. Calder [another UNMH neurologist] indicated that in his experience this was not the case.
Now I get that there is no evidence that quality follow-up care will produce an improved end result. It's a terminal diagnosis, and I know what that means. But Dr. Youssof seems to think helping people live a bit longer with a higher quality of life is akin to polishing the deck chairs on the Titanic.
So, what is going to happen to the ALS Clinic at UNMH, the one that serves the entire State of Nuevo Mexico? Dunno. I can fly to Phoenix and catch an accessible limo to the ALS Clinic at Mayo. I could probably afford to be hooked up with some off-color videos of Jean's choice. "Don John", most likely. But what about the people who can't afford the travel or the soft porn/comedy? The people who drive across the Land of Enchantment every three months to see a neurologist who enjoys telling people they have ALS, but just doesn't have time to tell them what to do about it?
Days 1399-1403, May 13-17, 2014. [Author's note: I have read this -- you know, because I wrote it -- and my recommendation is you might want to read paragraphs 9-10, and then come back here and have a look at paragraphs 1-8, and then continue through paragraphs 9-10 one more time. That is what I think you should do.] Here's a thing to consider if you encounter someone with ALS and a speech impairment. Don't pretend you have no idea the person exists. There is room for differences of opinion on this one, but I'm going out on a limb and predicting that, more often than not, you will not piss someone off if you make it apparent you have noticed he or she exists.
Is there a story behind this observation? Oh, yeah. This is not an isolated or rare occurrence. Oh, contraire, this sort of thing happens every week if you venture out, which I do.
Tonight, we went to Albuquerque High for the annual athletic awards. Abby was recognized as one of five Bulldogs to win a district crown. After the show, we spoke to a number of people we know from the neighborhood, soccer, baseball or track.
There was a woman we have known casually for ten or so years. I was in my chair against the back wall of the room. Jean was standing beside me, and the Insensitive Bitch (arguably an overly pejorative characterization) was standing right between us, less than a foot from me.
"Hi, Jean". I was looking right at her because I figured she would look down and say something like "hi, Doug". It was too noisy for me to be heard if I were to say "hi, you Insensitive Bitch". So I looked her expectantly, waiting for a pleasant greeting. The moment began to rot the way fish turns funky when it's been around a little long. I continued looking at her, and started to wonder whether she would ever look down. It became an experiment. I would keep my eyes locked on hers until she finally acknowledged me.
Her body was facing directly toward me. Her Insensitive Knees were no more than a foot from mine. She had finished the conversation with Jean. Now she was trapped by the exiting traffic behind her and to her right, Jean's back (Jean was, by then, engaged in another conversation) to her left, and me. Worst, the I.B. was facing me.
There was fear in her eyes as they darted back and forth. Involuntarily, it seemed, she allowed my gaze to catch hers for the most brief of instants before they shot, in desperation, to the ceiling. I.B next looked left (away from the exit), spun 270 degrees counterclockwise and made good her escape.
While I'm on the general issue, here's another pile of roadkill on the highway of my life. "HEY, DOUG, IT'S JOE SMITH." The delivery is as if I were deaf and dumb as a bag of hammers. I'm going to say this once: I am not deaf.
I've read what I just wrote, and it even sounds to me like utterly unmitigated, bitter whining. I'm posting this anyway for the legitimate point I have made in a stupidly dramatic fashion above, and because it took a long time to write and I do not like wasted time at this point in my life. People are uncomfortable around me, particularly as my voice fades toward an indecipherable whisper. Also, not many people (including, apparently, my neurologist, which is a story I plan to tell soon) know much about ALS. Someone who sounds like me might reasonably be assumed to have brain damage. Unless you listen to me... Please listen to us. You may still think we have brain damage, but at least you'll have a better basis for holding that opinion.
If, like me, you didn't enjoy this, blame the Insensitive Bitch.
Days 1397-1398, May 11 12-, 2014. AHS Sports Update. Abby has been very consistently improving in both hurdle races this season. She qualified for the finals in the two biggest meets of the season aside from the state meet. This weekend, she posted the most impressive results ever.
In the 100 m hurdles she swamped the field, winning her first district championship in what can only be described as a butt whipping. Second place was over one second behind her. That is the equivalent of winning the 400 by 45 meters.
Speaking of which, that was exactly her margin of victory in the preliminary heat of the 300 hurdles. In the finals, she took second. About an hour later, the Bulldogs' mile relay walked away with another district title.
So, all that means Abby has qualified for the state meet in three events!
But the real deal from a parents' perspective is how she conducted herself. She prepared for the races, ran, and analyzed what she had done with pure joy. Her boyfriend's graduation ceremony is next week during the state meet, so joked about how she wanted to run great races, but have two runners pop breakthrough performances that would relegate Abby to third place which would not send her to state. Then, after the race, walking up to Jean and me with a sheepish grin, "dang".
UNM Sports Update. The Lobos played five Spring exhibition games Jimmy has moved into the two spot for keepers, and, in three game appearances, allowed only one goal. He has two windows of breaks this summer that bookend training and Calculus 3 (! ). James ran the table academically this year and is talking about a possible major in "Pure Mathematics". His affinity for math is not the product of either nature or nurture (unless the gene skips a generation).
Days 1394-1396, May 8-10, 2014. Big training week! Looks like I will get six days, including an indoor day where I held 91.2 for 40 minutes. A month ago, I was all jacked when I hung on to that level for 25 minutes. Today, we did a quick run to and from Balloon Fiesta Park, and I had less involuntary reflex activity than I have in many moons. And today was the 11th day of the last 12 that I've been on a bike.
Update: Saturday was the 13th of the last 14 on a bike. I am ready for a rest day, but I don't feel like I actually need one, even after a 50-miler today.
Here's the thing: when I'm riding, I can entertain my fantasy that I'm going to be the first person to ever recover from ALS, but mostly I feel like I am very much alive today, and unlikely to kick the bucket / buy the farm / croak / etc any time soon. On the other hand, on days when I spend the duration in the house paying bills, writing memos about how and why I did something like our taxes (in case someone else has to pick up one of my files and understand it), or working my way through episodes of "Gossip Girl", I can feel that I've walked to the end of the plank,and I'm being poked earnestly in the back by the business end of the Grim Reaper's scabbard.
I admit the previous paragraph was a tad dramatic, but the difference between a bike day and a not bike day is gigantic. And the people who make it possible to saddle up so often are my heroes. Here's a partial list of people who have made it happen at one time or another:
John and Kim Blueher,Dan Porto, Paul Mohr, Michael Donovan, Jean, Jimmy, Abby, Jessa, Mom, Dad, Charlotte Schneebeck, Maureen Bannon, Andy Kain, Damian Calvert, Steve Peace, Ryan Boyle, Captain Brent Lesley, Rob Pease, Jeff Dorwart, Mike Archibeck, Nick Pisano, Tim Holm, Lorrie and Steve Park, Marcia Hughes, Mike Pannell, Melonie Dawes Huntsman, Steve Hield, Barb Campbell, Bea Good, Greta Niemanas, Clark Rachafal, Dave Swanson, Greg Miller, Alan Schmidt, Mark Unverzagt, Joe Friedrich, Anna O'Connell, Nancy, Hailey, Morgan and Joe Fortin, Sport Systems, Two-Wheel Drive, Sport Systems MountainTop Cycling, Zipp, SRAM, USA Paralympics Coaches Mike Durner and Rick Babington, coaches, staff and mechanics at the US Olympic Training Center, and emergency department physicians at hospitals in Albuquerque and Prague.
They are people who have made my life better when I didn't have the goods to do it myself. How do you thank people for that?
Days 1385-1393, April 30 – May 7, 2014. Occasionally, I whine in these pages about ALS, and that is the plan today. Two topics: my neck, and false advertising by the National Institutes of Health.
In May 2011, I joined three friends for the 12 Hours of Mesa Verde, a mountain bike relay race. Here is how I described the brand new problem at the time:
Then, at the section called the “Rib Cage”, a dramatic roller coaster in and out of a series of arroyos, I found the G’s making it difficult to hold my head up. This continued and progressed for the last few miles. A very odd sensation – found myself straining my eyes to look up while my head dipped toward the bars, inviting me to gnaw on the carbon.
As with all things ALS, the situation has worsened over time. Shortly after the race, we created the first version of the head holder-upper, which was followed by increasingly stout versions until I gave up on upright cycling last July.
Now my neck is a pain under very light load. I should pause to point out that I am actually pretty lucky in this way. Many people with ALS are dead three years after diagnosis or the onset of a symptom. And, once a muscle group begins to fail, lots of folks have completely lost the function well inside three years. Those facts, however, will not stop me from registering this complaint.
I will give just one illustration to make the point. I have progressed (regressed, actually) to the extent that my neck will give way if I tilt my head too far in any direction. What this means is my head will fall. I do still have the strength to pull the noggin back up, but I'm not quick enough to prevent the fall in the first place. Think Wesley in the Princess Bride right after his rescue from The Pit of Despair.
Now, here's a practical application. I enjoy soggy cereal (Rice Krispies or Life work best). When I have them fed to me, if the person operating the spoon is higher than me (standing, for instance), the spoon tends to come in high, and that requires me to tip my head back as the cereal makes its way into the mouthal area. If I tilt back beyond a certain point (which may differ from day to day), my head flops back, the milk pours down and I gag, choke and such. The work-around? When the spoon goes in, I bite down on it, and this invariably causes the spoon operator to pull back, which keeps my head up.
That, friends, is a pain in the neck.
False advertising. Typical of information published about Lou Gehrig's Disease is this gem: "bowel and bladder functions are not affected by ALS". I recall reading those words several years ago, and thinking something along the lines of "hallelujah". One tiny problem: It is not true. Bladder first.
The bladder is voluntarily restrained by a muscle that weakened, in my case, early on. What this meant was I frequently found myself in a catch-22. I could muster the strength to restrain the bladder, or the strength to say "I need to take a leak", but definitely not both. Quite the conundrum, no?
Over time, we learned how to manage such "Code Yellow" emergency situations, but there were some bumps on the road.
So this brings us to bowel issues, which means pooping, and if talking or reading about the subject is not your thing, you will want to switch right over to npr.Org right now.
Still with me? The muscles that enable us to eject the content of our intestines are voluntary, and, judging by the patient traffic on the web, they are most assuredly affected by ALS. What does this mean, you ask? Have a seat and grab a magazine (assuming you are lucky enough to have working hands). Now just sit there. No fair grunting. Wait for the magic to happen all by itself. DO NOT HELP.
That makes the success of this operation wholly dependent upon timing -- being in the right place at the right time, as it were. That, friends, is a pain in the ass.
That's it for the whimpering. For now.
On the bright side, this week brought two more "best" performances on the indoor bike -- 91.5, and 92.1, respectively. And, Saturday morning, we rolled off 51 miles with an average speed of 16 mph. Silver linings. Life is good... As long as you get to the right place at the right time.
Day 1384, April 29, 2014. Just around the corner. The Fourth Oso High Mountain Bike Race. June 8, 2014. Help us claw our way to a fundraising milestone -- Oso High contributors have almost put a total of $300,000 toward battling this miserable disease. Come up to Angel Fire and race; watch the festivities trailside; or click right here and make a donation to the ALS Association.
As if you needed a better reason to get involved, permit me to introduce John Meister's most recent edition of Oso High artwork. The 2014 Oso High Mountain Bike Race logo. This bad boy will appear on the event t-shirts, and you want one.
It is actually very funny, but it might warrant some explanation for people who don't know the Spanish word for "bear". "Oso High" was intended to be a play on words, as in "oh, so high" because the start line is over 8,700 feet above sea level. Couple that with the fact "oso" is the Spanish word for "bear", and that logo is a stroke of comedic, artistic genius and you definitely want one. Donate $150 to the ALSA, and I will send one right to you. Click here. For an even more fun option, donate $150, get the shirt AND free entry into the bike race. Register now at www.newmexicosportsonline.com
Days 1377-1383, April 22-28, 2014. So, I've been proudly reporting the data from recent workouts... 90.4 90.6, El Tour de Mesa ten minutes faster than a year ago. Today I can announce we have now ridden our "default" bike route four times in a week in less than an hour, after a six month drought.
NEWS FLASH! With this entry half written, I did the stationary workout again -- 91.1. That is the highest ever, again. "Ever" takes us back to early September, almost eight months ago. I repeat: this is not how ALS works.
What does all this mean? Am I getting better? I'm smart enough to know that is not what is going on here. No one. Never ever. ALS is not a disease from which people recover. It's just never happened. Then why am I attacking these workouts like my life depends on the performances I throw down?
One word: "Denial"? Nice try, but wrong. The correct answer is "schizophrenia". Don't get all uppity about me making light of a for-reals mental health disorder. Isn't it fairly unstable for me to bounce back and forth between (a) knowing and (sort of) accepting that my demise is fairly imminent, perhaps staved off only by the ridiculous, relentless (and danged fun) assault we are waging on traditional notions of what constitutes a roadworthy "bike"; and (b) planning our hike of the entire Continental Divide Trail after my recovery is complete.
When I'm rationale, I embrace (a), but I sure enjoy the diversion of (b) when I'm all hypoxic during or after a killer ride. In either mode, my buy-in is total.
Dr. Jekyll is now off to head out for a ride, from which I expect to return as Mr. Hyde.
Days 1372-1376, April 17-21, 2014. If you are keeping track of this stuff (and I am), the indoor bike workout continues to trend in a happy direction. See April 1-3. That 90.6 became 90.8 this week. And that was Thursday, after hard rides Monday, Tuesday and Wednesday. It's messing with my head, but not too much... I still can't pick my nose. That keeps things in perspective.
Days 1368-1371, April 13-16, 2014. Lawyers like to distinguish themselves from other lawyers. Plaintiffs' lawyers of a certain level on the food chain use billboards (simple: "Accident? Call Peter"; clever: "Hurt? Call Bert"; multilingual: "Accidente? Llame Hector -- se habla Espanol"). A bit higher up the pecking order, TV commercials ("Have you or a loved one ever taken [insert name of pharmaceutical], and suffered from any of the following 150 symptoms, before or after consuming the drug? If so, call 1-800-BAD-DRUG1-800-BAD-DRUG"). Farther still up the totem pole is pure name recognition (football stadium or city renamed in exchange for millions).
Defense lawyers love "best" lists ("Best Lawyers in America", "Super Lawyers", "Law Dragon"). On the plaintiffs' side, it's all about the Benjamins -- moving to a higher level is determined by how much money you are willing to spend. The defense equation is, oh, so much more merit-based. The listing entity conducts surveys of, primarily, other defense lawyers. Lawyers who have lots of friends around town -- especially in a small burg like Albuquerque -- tend to pile up the listings. I suspect this is the explanation for how I picked up my all-time favorite rating. Best Lawyers listed me for the specialty field of "Bet-the-Company" litigation (perhaps they interviewed only Jean, or had in mind only very small and not particularly profitable companies).
Bruce Hall is the sort of lawyer who should appear in these lists. All of them. Even in a massive legal market like New York or L.A. Bruce practices at the firm that was most often our direct competition for large corporate clients. It would be bragging and inaccurate to say Bruce and I competed for clients.
In an initial phone call with a potential client, caller often says something like "now, I have to be frank with you, I'm talking to other lawyers before I make my decision." The truth is, if they went on to say they were talking with Bruce or his partner Andy Schultz, I was more likely to take an extra long bike ride rather than spend the time preparing for the interview.
One list I'm infinitely more fortunate to be on than "Bet-the-company" is Bruce's list of friends. Bruce sent me an email last week with Arthur Ashe's daily formula:
Start where you are. Use what you have. Do what you can.
If you put three years of the blogs in a Word document, it is 500 single-spaced pages, about 400 of which have been my effort to say something I probably could have found with a reasonably well-conceived search of The Google.
Start where you are. Use what you have. Do what you can.
Days1359-1367, April 4-12,2014. El Tour de Mesa! The logistical challenges of bike events are substantial. When I ran track, I had a packing list like so: shorts, singlet, sweats, shoes, spikes. My list for bike races is three pages, single-spaced. With biking, you need pre-race, race and post-race food. You must have two of everything that attaches to your bike frame, because anything you fail to duplicate will self-destruct as you remove the bike from the car. Your vehicle must be fit for bike racing, which is to say it must be a rolling shop. You will need an air compressor if you plan to use fancy wheels. I could go on. I'm not joking about the list. Three pages.
Now imagine taking ALS Boy here to a race.
If you thought through that for more than a moment, you can easily understand why it was a full-on miracle we arrived with four bikes and their riders, one recumbent tandem trike and its riders and all the necessary food and other stuff, at the start line at -- get this -- 6:07 am for the 6:15 start.
"We" for the trip was Jean, John Blueher, Captain Dan Porto, Michael Donovan and me. The secret to getting us to the race before "go" was John's insistence on driving to Mesa on Thursday. This gave us Friday to catch up with Andy (who needed the day to thaw out from the relentless Toronto winter), and the boys were also able to spend many hours tuning the machines and removing six months of New Mexico's state flower (the goat head) thorns from tires. My neck and shoulders had been brutalized by the seven hours in the truck, so I occupied myself watching the wrenches turn while shaking off the effects of the trip. As the day went on in the parking lot, the boys followed race training manual nutrition recommendations to the calorie. Rum, beer, Mexican food and cigars were the primary fare.
Later, everyone prepared bottles of the stuff that would keep us pedaling on Saturday. Finally, as the laughter faded from the room, people began dancing around the 800 pound gorilla until someone finally said "uh, the hotel is three miles from the start, the tandem is in the trailer, we have to stash the wheelchair... What time should we get up?" There was also an important issue of digestive health that played in the discussion, and we settled on 3:30 am.
That killed the buzz and people shuffled to their rooms.
One way or another, we accomplished the necessary stuff in the morning and headed for the bikes "later than we hoped, but earlier than we expected", which had become a description of everything we did all weekend.
We found our strategically preferred starting position, at the back of the 1100 bikes staged for the start, only eight minutes away. We missed the national anthem, so we had to make do with Andy singing "Oh, Canada".
About three minutes after "go", the bikes around us began to creep forward, and we were rolling within another minute or two. The first 20 miles -- the only flat ones on the course -- ticked off in around an hour and fifteen and we made our first pit stop. When we take a break, there is much to do. I need to have fuel and water pumped into my feeding tube, my arms get very stiff and need to be stretched, equipment adjustments are usually required. Plus, everyone other than me needs to hit the port-a-pot, and they need to deal with their own food, water and equipment issues. We pulled this off with NASCAR efficiency. With one exception that also had a NASCAR feel.
One member of the team decided he or she would avoid the line at the john by finding a spot in the bushes to take care of business. In Arizona, "bushes" are called "cactus". Contact was made, and he or she suffered the fallout all day.
The next 50 miles were a series of long climbs, followed by long downhills. At home, we tend to ride flat routes. There are two primary reasons for this. First, fast is more fun than slow, and, while downhills are fast and fun, the price (uphill) is higher than on an upright bike, which leads to the second reason we ride flat in the Burque. The tandem weighs in at 70 pounds. True, it will haul two people, but John's machine weighs less than a 15.1 pound trout. It is not an oversimplification to say Dan and I are each riding 35 pound bikes. And don't even get me started on the geometric differences between uprights and recumbents. The bottom line is the tandem is painfully slow going up. Out of respect for our companions, we stay flat so nobody falls asleep. Thus, we have limited experience with climbing and descending. If we had done more of this at home, I would have known not to do what I'm going to describe next.
When I discussed the pit stop, you might have noticed I did not need a visit to the loo. This is not because people who have ALS don't have to pee. Instead, to avoid the need to hoist me, in an ungraceful manner, from the tandem to the crapper, I wear an "external" or "condom" catheter. This connects to a tube that runs down my thigh and peeks down toward the asphalt from the cuff of my shorts. At a rest stop I can fuel and unload simultaneously.
On the first descent, we stopped turning the pedals at 22 mph and let gravity take over. Jean, John, Michael and Andy stayed with us in a tight group so long as they kept a reasonable cadence. It occurred to me I could improve my comfort by just letting fly while we coasted. I mean I was not busy at all. However, by the time I came up with the idea, we were nearly to the bottom of the descent, so I had to get back to work.
The next climb was the longest -- six miles, ending at the next rest area we had targeted. Through the grind, we benefited from the effort of Jean, John, Andy and Michael cutting the wind for us until we arrived at the rest area. Fresh off the refueling, we set off for the only nasty descent on the course. It had some high speed turns and, to make it interesting, some temporary "keep left"signs which, if heeded, would have put us in oncoming traffic.
The next and final climb took us, very slowly, to the course high point, Usery Pass. Our team, meanwhile, passed the time by weaving on the road, trading insults, and keeping Dan and I shielded from the breeze. At the top of the pass, we were 55 miles in, with 15 fast and mostly downhill miles to go. This brings me back to the catheter and my on-the-fly idea.
The pre-race plan had been to stop at a rest area at 58 miles. There was chatter in the group about possibly skipping the stop because we all felt strong and it appeared we had a shot at completing the race in a time faster than last year. The only issue for me was I had been, shall we say, well-hydrated. Seemed like a good time to test my plan.
We were coasting at around 25 mph, so I backpedaled to put the tube low to the pavement, about six inches from the surface. I figured the effluent would hit the pavement and stay put. Nope. The effect was much more like pointing a hose behind me and aerosolizing the contents of the tube. I heard groans from behind as riders peeled to both sides of us. Oops.
With about ten miles remaining, our time was 4:30, giving us 43 minutes to go ten miles and faster than in 2013. We turned into a fairly stiff wind, but Andy and Michael slipped in front of us and escorted us home. 5:03, ten minutes faster than a year ago.
Saturday night we celebrated our mastery of the Universe with Jean's sister Lorrie/Mary, her husband Steve and Sheila and Ken Refner. Aside from the fact we made it, I have nothing nice to say about the drive home. We have tried so many different setups without success. I just can't be kept comfy in the car. The problems, per usual, are my shoulders and my neck. I actually spent some time pondering an elective bilateral armectomy. As I stared at the Petrified Forest National Monument, it occurred to me I might miss them more than they hurt, so I went back to focusing on the Redneck Comedy station.
Putting aside the driving, it was a perfect weekend. Great friends, dialed-in equipment, ideal weather and beautiful scenery. Saturday was, as Andy said, one of the best days ever on a bike. It was one of the great days of a lifetime. Hard to believe we can still have any of those, but the wonderful friends we have gathered around us keep giving us the gift of joy. Even, if you can believe it, when I pee on them.
Days 1356-1358, April 1-3,2014. Here's a head-scratcher a/k/a WTFO (the "O" is for "Oscar", of course). I started going to physical therapy in September. I was regularly on a bike that applies electronic stimulation to select muscles. The machine keeps detailed data on each workout. There was a learning curve, and that meant a review of the weekly data showed dramatic improvement each session. This made my therapist happy because the insurance company is always looking for improvement before they pay.
The truth, of course, was I was just getting better at operating the bike. There were many variables we had to experiment with in order to find the sweet spot (seat position, foot position and attachment method, electrode placement, stimulation intensity, 1-3-1 zone or 2-3 zone, etc).
By November, we had it figured out and I popped a best of 90.2 gigamicrowatts per nanometer (something like that - it's a measure that melds power and RPM and other stuff). I didn't replicate that performance the rest of the year.
In January, I was sick and the few workouts I did reflected the same. By February, I was past the effects of my cold, and I posted sessions in the upper 70s, and a couple in the low 80s by early March. The heart rates that came along with the workouts were consistent zone three (hard effort, difficult to talk), with short periods in zone four (very hard effort, looking forward to being done).
Before we left for the cruise, I had one session at 86, still driving a high heart rate. In the two weeks after the vacation, the numbers have climbed at a surprising pace. Both weeks, I did back-to-back days, and in both cases, the stronger numbers came on the second day.
This week, I put down a 90.6 on Tuesday, and followed that new high mark on Wednesday by running at the same level for 15 more minutes. Meanwhile, my heart is chilling at the bottom of zone two. WTFO?
This is not the way ALS works. It's messing with my head again.
So today we leave for Phoenix to ride 70 miles in El Tour de Mesa on Saturday. I'm going to be very suspicious if we beat last year's time (5:13).
Why do we keep riding? Fun, hope, freedom, and to make my dreams more interesting. Last night I dreamed I could ride a two-wheeler again -- it was not pretty, my balance was sketchy, and braking was almost impossible -- but there I was, asking myself if it was a dream and deciding the answer was "no".
Days 1340-1355, March 16-31, 2014. We had to wonder whether God was trying to tell us to not get on the ship because He was planning to sink it (... Thy will be done; part of His plan; etc -- sort of like ALS).
Most people who take a week-long cruise plan it somewhat more than two weeks ahead of time. This was one of many lessons we learned about cruises last week. My favorite was "use the Purell", but there were many.
Because of limited flight options to Fort Lauderdale during Spring Break... And because of the kids' schedules, we wound up with three different flight itineraries. Jimmy was to be in Phoenix for an exhibition match the Lobos were playing against a club team. The ship was set to cast off at 4:30 on Sunday afternoon. The earliest we could get Jimmy out of Phoenix was 5:00 Sunday morning. The flight would put him on the ground in Ft. Liquordale at 2:15 pm. IF everything went on time.
Abby had a track meet Saturday morning, so we booked her and Jessa to leave the Burque at 3:00 pm for a midnight arrival. Jean, Nick and I would lead the crew by taking a Southwest flight Saturday morning. The latter was the only part of the plan that played out as conceived. By the way, there were no $69 fares offered to us for some reason. Things were about to get interesting.
On Thursday, UNM was informed that the Arizona soccer club had filed for bankruptcy protection. As the team is comprised of players who expect to be paid for what they do, the game was off. We didn't see this as a problem (yet) because it would allow Jimmy to travel with the girls. American Airlines told us the girls' flight was full. Again, no problem because Jimmy could take a different route, arriving within a few minutes of Jessa and Abby.
Jean, Nick and I left on time and had a brief stop in Houston. While we were on the ground, Nick's phone rang. It was Jimmy. "Don't tell Mom", he said "my flight was booked for tomorrow". "Tomorrow" would be Sunday, and this would put Jimmy in Lauderdale well after the ship sailed.
Everything out of ABQ was full on Saturday. Smart phones went to work and we found a flight to Phoenix that would arrive in time for Jimmy to catch a red eye to Miami. That, plus a $100 cab ride, would put James at our hotel by 7:00 am.
About the time our flight lifted off in Houston, the girls were circling above Dallas looking for a hole in the thunderstorm. This went on long enough they missed their connection to Florida. They spent the night in a hotel at DFW, then caught an early ride to Fort Lauderdale Sunday morning.
After all these mini-adventures, we were all in Florida with the Celebrity Silhouette still tied to the docks.
The ship is beautiful, and we splurged on a suite with a balcony, and even had a recliner brought in for my naps. The ship is completely accessible for a wheelchair user, right down to the swimming pools having lifts. Exercise proved to be a challenge for me, but on our third try, Nick, Jimmy and I figured out a workable arrangement of Ace wraps and straps that kept my legs moving.
Our style of travel (disorganized and late) plagued us on the cruise, as we were tardy for our dinner seating every night, and came within about three minutes of being left on Puerto Rico and St. Maarten. The only reason we aren't still on St. Maarten is our driver knows a guy who knows a guy who opened a gate to "Lover's Lane", a rugged dirt pathway that enabled us to bypass port security and drive down the pedestrians-only cruise ship docks, right to the Silhouette's gangway. The trip back home was to be a lazy day, because we had seven hours between disembarking and our flight out from the airport 15 minutes from the port. This also turned into a nail-biting episode, as we spent the day in a restaurant by the beach and then waited more than two hours for an accessible cab.
A side note. The Americans with Disabilities Act was passed in 1991, 23 years ago. Cities have made little progress in making cabs reasonably accessible to wheelchair users. Of the places we have visited in the past two years, New York City is closest. In Denver, a reservation is required 24 in advance, and the wheelie is advised to expect a one to two hour wait. We got 90 minutes.
The cruise was beautiful. Two days at sea bookended three partial days in port. Lots of time to relax with our family, and plenty to do at any time. It was a very different experience than we have had on our prior trips to the Caribbean. A 40 foot catamaran with a dozen souls aboard has nothing in common with an 1100 foot, 16 story vessel hauling 4000. Kind of how our family's situation has changed in between.
Two things we still have going for us are our love for each other and for adventure. So, just like when we chartered other people's half-million dollar yachts armed with all the sailing expertise the desert can instill, this vacation was the most we could do with what we have. And the likelihood of us managing to run the Silhouette aground was far smaller. Heck, I didn't wake up once all week wondering if the anchor was still set. The silver linings just keep coming.
Days 1334-1339, March 10-15, 2014. Big training week. Monday was the Balloon Fiesta 16, our first round trip in an hour in several months. Tuesday we went to the PT place with my dad for the spin workout, and I recorded my second highest average power in the six months I've been doing the sessions. Wednesday was another Fiesta 16, again, right at one hour. Today's PT session was identical to Tuesday, and tomorrow we plan to go 45 on the tandem.
I will finish this entry after tomorrow's ride, and I'm hoping I won't have to eat any of the words I'm about to write, but I feel like we are ready to pop a solid long ride. Saturday morning we leave for a family cruise vacation. This will give me, Jimmy and Nick another chance to work some engineering magic on whatever form of bike awaits us in the ship's exercise room. The packing list includes plenty of velcro, elastic and duct tape.
... And there was no long ride on Friday. The wind cranked up to where we couldn't see the Sandia Mountains, all of around 7-10 miles away. In that kind of wind, there is no point in riding because any gain in fitness is more than offset by the accumulation of dirt in your lungs. Silica (dirt) is only slightly less risky to inhale than asbestos.
So, off to Ft. Lauderdale.
Days 1330-1333, March 6-9, 2014. When a boa constrictor kills her victim, she doesn't literally crush the prey; instead, she patiently takes what the doomed gives her, little by little, until the end. Once the coils are snug, the snake just takes up the slack each time the victim exhales until the lungs have collapsed.
You have no idea where this is heading, much like I had no idea where I was heading when Jean confidently took control of my wheelchair in a fondue restaurant on date night.
I like high tables because I can roll under the table like a normal human does. For some reason, my wheelchair was designed to a height that rams my knees right into the table top as I approach. With a high table, however, I can raise the chair to a level just under the dining surface and then drive the chair under.
"I can so totally drive this thing with the controls facing backward", Jean bragged as she lifted my hand from the joystick. Just under the table top, a metal box was mounted with controls for the fondue burner. The box was in the path of the control panel for my chair, so Jean spun the panel around, giving us six more inches of movement. See Plaintiff's Exhibit A.
Plaintiff's Exhibit A.
"Caution! Danger! Aviso! Peligro! Cuidado!" The manufacturer pleads for the user to exercise the utility utmost care when operating the chair with the controls reversed (that last word might be Spanish for "city", and I don't really know how that makes sense -- perhaps a typo).
With the restaurant manager, the bartender and our server listening intently, Jean explained how pushing the joystick back moves me forward, and vice-versa. Then she demonstrated by pulling the stick back. Waaay back. The chair lunged forward, the joystick hit the fondue control box, pinching Jean's fingers. She deftly pulled her hand from harm's way as the chair continued to move forward. The joystick was now bent back by the pressure from the box, which propelled it farther forward. As the chair moved forward, the joystick, of course, moved back. As the joystick moved back (which is really forward), the chair accelerated.
Meanwhile, the forward motion of the chair brought me together with the granite table top right at the level of my sternum. I was pinned between the granite table and the back of my chair. And the chair was still moving forward. This continued until the power of two horses in the wheelchair motor could not compress my chest any further.
At that point, the chair groaned to a stop. And that brings us back to the boa constrictor.
Every time I exhaled, the chair crept a bit farther forward, compressing my chest and making the next effort to inhale more difficult and less productive. This continued until Jean hit the power button, which stopped the forward motion, but left me trapped. The chair locks in position when the power is shut down. So there we were. See Plaintiff's Exhibit B.
Plaintiff's Exhibit B
I was unable to help find a solution because the only sound I could get out was a moaning sound that kept everyone on their toes. The obvious fix would be to power up and back me up. However, with the controls facing rearward, the joystick was pinned all the way back (which is forward). Jean tried in vain to get the machine in neutral. Finally, after what I estimate was an hour and a half (but may have been slightly less), several people lifted the chair (that felt good) and pulled me away from the table.
And that is the story of date night.
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I was remiss in failing to mention this earlier. Jean looked stunning on Thursday (the night the foregoing, uh, went down). I continue to be amazed how she can keep getting more beautiful. She was rocking a sparkling silver off-the-shoulder sweater, and she's even more fit than the day we got married. Must be Jean's genes. Her father often told her mother "you get more beautiful every day, and today you look like next Tuesday". On Thursday, Jean looked like next Wednesday. I think it was that way all evening. Although I can't be certain about the time blood was squirting out of my eyes. My vision was a bit fuzzy.
Days 1328-1329, March 4-5, 2014. So we have been trying to figure out what the next event should be. I mean, here we are with the new 80 tooth man-eating chain ring. We could just ride to the Balloon Fiesta Park a few times a week until I can't make the pedals turn anymore.
This is reminding me of a scene from a classic movie, "Eddie & The Cruisers". Actually, it's from the sequel. In the 1960s, Eddie Wilson was the bomb. A meteoric rise to the top of the rock world, and, then, on a cold March night, Eddie's '57 Bel-Air plunged off a Jersey bridge. His body was never found. Subtly providing insight into the story line, the sequel was titled "Eddie & The Cruisers II -- Eddie Lives!" He shows up on a construction site in 1984 with bomb-proof hair, a porn star moustache, and a new name. He's been playing guitar with angst at night in his dimly-lit apartment, but the bug bites him and he puts a band together, rents a camp in the woods, and drives the group toward the perfect sound.
Weary of the routine, the over-caffeinated lead guitarist, Rick Diesel, confronts Eddie/Joe and tells him Rick has made some bookings ("we're just out here playing for the goddamn trees, man!"). From there, the story is poetic, though arguably predictable, and that brings us back to riding the Balloon Fiesta route every time we venture out.
Like the reconstituted Cruisers, we need to get out on the road. And we will do that on April 5th at El Tour de Mesa, 70 miles through the desert around the Phoenix suburbs. Oh yeah. 80 teeth. Oh. Yeah.
Days 1323-1327, February 27-March 3, 2014. I was just saying how fabulous New Mexico winter weather is for cyclists who are also skiers. I wasn't fool enough to say the winter "never" sucks if you are into both bikes and skis, but this weekend the heavens delivered a real ankle-grabber to both camps. What happened was a storm system slashed its way across the Land of Enchantment from the northwest corner, right through the Burque and off to Texas by way of the Permian Basin (where things smell like cow poop or a gas rig... For good reason).
In this sneaky manner, the storm was able to dump a chilling wind and droplets of mud on us, but it missed that New Mexico's ski country. To add a charming touch to the presentation, the rain hit within a minute of our crew pulling out of the driveway. It was the only time in about 50,000 miles of riding I have chosen to bag it because of the elements.
On the plus side, we were out there long enough to get a sense for the new mega chain ring. The boys at Two Wheel Drive dialed in the monster this week.
If you are a cyclist, you will understand the significance of 80 teeth right away -- either from the moment you read "80", or by learning that it now goes 20 mph at 47 rpm. If you are not a cyclist, this should do the trick: in "cruise" mode, bikers in Le Tour de France turn the pedals 80-95 rpm; and up to 120 or a bit more in short sprints.
So, why don't we just pedal 85 revs like I did back in the day (I did that in a lower gear than the boys in Le Tour; which is to say rpms do not translate directly into speed)? The turd in this punch bowl is called "spasticity", a gift of ALS.
Spasticity causes muscles to tighten unnaturally with movement. The faster you try to move the muscle, the more dramatic the tension. Back when I was still walking, spasticity turned an unremarkable stub of a toe into a faceplant because the leg that was supposed to scoot forward to allow me to regain my balance would instead become a uselessly rigid post. Now, spasticity is taking away rpms. Very slowly. A year ago, I could spin comfortably to around 60 and I'm down to about 52 now. The reason this seemingly small change has prompted me to bump us up to the largest available ring is that the drop in the cruising speed down to about 17 from north of 20 has made the rides ridiculously easy for the guys on upright bikes. Meanwhile, when we exceed 17, the pace of the spinning is too much for me, which means I'm not helping Dan, and I'm also not getting much of a workout.
So, I can't spin any faster, but we can move more chain with the giant ring, and that does translate into more speed and keeps my effort relevant at the higher speeds.
We didn't have any trouble proving the theory was sound in the five miles we got under our belts before the rain and wind turned us around.
Can't wait to let it fly on a regular every day normal New Mexico day.
Days 1305-1322, February 9-26, 2014. A great thing about being a cyclist and a skier in New Mexico is that winter weather hardly ever sucks. If it's cold and stormy, the skiing is sweet; but, if it's blue sky, the temps climb and biking is unseasonably awesome.
This is a biker's winter. The snowpack in our northern mountains is lower than it has been in 30 years. That's bad for everyone who needs water this summer. That is most people, including bikers. In the short term, however, we are having 60s every week, and very few days when the weather has been nasty enough to think about scrapping a ride (and the wind has been the most common culprit).
This has meant lots of miles on lots of days in January and February. The boys have been using the off-season to build mad skills as a wind block for the 70 pound tandem. Click here for a sample on The YouTube.
Another recent development in the speed department is that we only had to go to Oz to find a bigger front chain ring. This bad boy has 1, 2, 3, 4... 80 teeth! It's a green, totally environmentally-friendly chain ring. It is a recycled manhole cover. It is the missing Olympic ring from the opening ceremony in Sochi. Attach it to a saw motor. Cut down a redwood. Oh yeah.
Day 1304, February 8, 2014. If at first you don't completely succeed... Make a few modifications to the ski, say a little prayer, point downhill, and try again. The crew for the weekend: Paul Mohr,nephews Joe Friedrich and Nick Pisano, Jean, and our dear friend Andy Kain,on a visit from near Toronto. Jimmy and one of his UNM soccer teammates joined us Friday night, but didn't ski with us because the UNM women's ski team had a race in nearby Red River. Somehow that took priority.
Angel Fire is a ski resort Of Bubba, By Bubba and For Bubba. By "Bubba", I obviously mean "Texas". The ratio of Texans to New Mexicans is about 8:1. If you went to Virginia Tech, that means there are many more Texans than New Mexicans. There are several reasons for this, including: a) most New Mexicans live in Albuquerque, and Angel Fire is farther from The Burque than Sandia Peak, Santa Fe, and Taos; b) Angel Fire is closer to Amarillo, Lubbock, and Wichita Falls than Sandia Peak, Santa Fe and Taos; and, most importantly, c) Angel Fire's actual mayor for over eight years was (I am not making this up) Bubba Clanton. That caused many Texans to buy vacation homes with confidence they would not be nationalized by the Mexican government. Having dutifully made fun of Bubba, we love Bubba. Without him, the ski area sure would not have two Vail-worthy high speed detachable quad chairs, state of the art snowmaking, or, quite frankly, any chairlifts at all. And our cabin would have axles and a trailer hitch.
There are 4000 single-family residences in Angel Fire, but only 1200 year around residents of the village. Bubba does not live in Angel Fire. As a result, the mountain is often empty. Bubba skis predictable times -- the Christmas holidays, three-day weekends, and spring break. For several years, the resort tried to lure Bubba for the two-day weekend between the conference championships and the Super Bowl with the "Big Ol' Texas Weekend". The event included barbecue under a tent with a western band with a name like "Loose Gravel", a keg throwing contest, and the Dallas Cowboys cheerleaders punching lift passes. Bubba's mama may have raised a dummy, but that was Bubba's brother. Bubba was not fooled into making the 12-hour drive from Dallas or Wacko, and the Big Ol' Texas Weekend is a memory.
The foregoing was a long way of saying we had the mountain to ourselves this weekend. February 8-9 offers nothing to draw Bubba, and he was at home watching the Olympics or Duck Dynasty.
Given our last experience with a blustery day (the wind was nuking on Saturday morning), we decided to exercise caution, and we called the ticket office to make sure the breeze had not shut down the lift. We did so at breakfast, after breakfast, and one more time right before we loaded the ski (for good measure). Then we drove to the end of the road and pointed downhill.
The trip to the base area was smooth, but we wanted to get my legs more involved in turning. You can get the general idea of the setup from the photos. My boots have small skis on them to help stabilize and turn the ski. The problem was the skis wanted to slip forward, giving my quads less opportunity to push down on the snow.
You may have guessed this already. We should have called the ticket office one more time before exposing ourselves to a possible lift shutdown. So there we were, at the base with our vehicle halfway up the mountain and no chair to give us a gravity advantage to get back to the truck.
We called the cabin, where Jean's sister Maureen had just snuggled in with a book, completely unaware she was about to become my favorite sister-in-law. Maureen cheerfully started down the road to retrieve us, and we used the time to work on a solution to the foot slip problem. Two bungee cords putting rearward pull on my heels was the winning design.
The next morning, armed with the new design, we hit the slopes right at the crack of noon. Two full laps of the mountain were as stressful and exhilarating as any two runs I've taken in over four decades of skiing. I was able to take in a few of the fantastic views available from the area, but only quick glances seemed prudent because of the experiences I have had with smashing my noggin on hard surfaces lately.
Paul did a fabulous job handling the tether behind me. He limited his assistance to speed control as much as possible, so I was able to make many of the turns on my own. Check out this sample of what we looked like by visiting The You Tube. Click right here for one minute and seven seconds of totally sick shredding. We may have to go back before the snow goes all gooey/muddy and other types of nasty. Bubba needs to see this!
Day 1303, February 7, 2014. I'm Not Dead Yet Part Trois/Tres/Drie/Three. Forget what I said yesterday. I went to Health South today to do my usual, and turned in probably my fourth best session.
ALS may not cause cognitive dysfunction, but it sure as heck wreaks havoc in the neighborhood.
Day 1302, February 6,2014. Another bit of ALS advice in case I wasn't clear on January 28. Do NOT get sick when you have ALS. After reaching maximum medical improvement from my cold last month, it appears I have lost (for good) about 10% of my ability to produce power on a bike.
When I go to Health South (the place where I did physical and occupational therapy, a place that completely rocks), I have a bike workout on a machine that produces detailed data on my session. The short story is everything points to a shortage of about 10% as compared to my very consistent performances between September and the end of the year.
I tried, but I'm not finding any viable non-ALS explanations. Plus, when we were setting up the bike yesterday, I looked down at my left leg, and saw the limb of a paraplegic. A giant knee right under a quad that can't possibly belong to me.
WTF, right? Even when I was sick, the most consecutive days I had off the bike was two. When I ride, I ride hard. My heart rate numbers look pretty close to my rides back in the day. This doesn't sound like a recipe for atrophy. Must be the rest days when I sit in a chair for five hours and none of my muscles move at all.
As I've been saying for as long as I've been talking about this ridiculous disease, use it or lose it.
Day 1301, February 5, 2014. Four years ago today a neurologist told us "I need you to be prepared for the likelihood you have ALS." Jean believed her; I did not. I'd like to be able to relive some pieces of the four years as much as any days of my life with Jean. There has been far more magic than tragic in that window, and we'd be poorer if we had missed much of what this journey has brought.
On the other hand, we could have gone to Rome without ALS, and I feel confident the driving would have been less terrifying. Do NOT tell Jean I said that. Please. She actually did very well once she figured out the clutch, and the local customs relating to adhering to traffic lanes, and the thing about parking on sidewalks.
Day 1300, February 4, 2014. We are led to believe that the state of the art care for ALS is readily accessed through the "ALS Clinic". There is such a clinic at a major health care facility in most metropolitan areas. MDA and the ALS Association provide most of the funding for the clinics. They are handy. You show up at the clinic every three or four months and you sit in one room, where you are visited by a nutritionist, a physical therapist, an occupational therapist, a respiratory therapist, a social worker, and a board certified neurologist.
I feel like a total dumbass for confessing what is in the next sentence three years after my diagnosis, but here goes. The ALS Clinic at UNMH (I'm limiting the opinions here to UNMH because the situation might be different at the Mayo Clinic or at an ALS Clinic in a big city) is the equivalent of a public health clinic. The sort of place people with no insurance go when they are ten months pregnant to find out what the lump is all about.
I realize that this probably sounds elitist and oh, so wrong. But if you are in the 1% or whatever percent is fortunate enough to have a Cadillac insurance policy like I have -- my over-the-top policy is called "Medicare" -- do yourself a favor and try out a place with some dark wood in the reception area. Heck, at least a reception area.
Here is how I've gotten to this point. First of all, I am biased in favor of UNMH. Jean was the employment lawyer for the hospital for a period of time. I was outside counsel to the hospital on one of the most interesting projects I worked on in my whole career. The people who staff the Clinic are committed and compassionate beyond all reasonable expectation. But the system just doesn't cover the bases.
When I was sick last month, I couldn't breathe. The natural history of ALS is that you ultimately die from respiratory failure. I sent an e-mail to the neurologist who runs the clinic. The response was like UNMH has never encountered an ALS patient with breathing problems. My neurologist was clearly frustrated by her interaction with pulmonology, and all they could offer was an appointment the following Wednesday or suggest I go to the ER. The clinic, you see, does not have a relationship with a pulmonologist. Let's say that one more time -- the ALS Clinic does not have a relationship with a pulmonologist. [I have to pause for a moment. My Dynavox computer that tracks my eye movement and types for me has a time-saving feature that predicts the next word I will type from the context of what I have been entering. When you type "does not have a relationship with", as I have done twice in this paragraph, the computer predicts the next word will be "Monica".]
In the past three weeks, I have heard from three people who have "how I got my ventilator" stories that go like so: "I had never seen a pulmonologist; one night I could not breathe; I went to the ER; they told me I could have a ventilator or go home dead; they could be paged when I decided." This appears to be the standard practice at UNMH. Maybe it's just me, spoiled by the luxuries of Medicare, but this does not seem like a very patient-centered way to work through a decision of this magnitude. It is probably pretty reasonable for dealing with a decision to get a tetanus shot, but I'd like to have a bit more time to think through this one.
A reception area with dark wood.
Days 1294 -1299, January 29 –February 3, 2014. What if I did this to myself? I find myself thinking about such things when I should be sleeping.
No one knows what causes ALS,but the following are all among the suspects.
- Diet Coke. I had a habit of about four a day for years.
- Head trauma. I played football during the years when a mild concussion was known as "having your bell rung". In 2008, at my first Leadville Trail 100, I bashed my head on the trail four miles in, and then put in 99 more miles over the next ten hours at 10,000-12,500 feet, all hypoxic, dehydrated and very low on sodium. Two weeks later, my biceps began twitching -- generally regarded as the first symptom of my ALS.
- At the end of the LT100, i rapidly corrected the low sodium. Perhaps too quickly?
- Stress. It takes a lot of gut-wrenching to look cool and competent when you doubt that either is justified. Starting in about 1995 I was playing above the rim, and felt like I had used a small trampoline to get up there, all the while terrified someone would notice.
- French fries.
- Chemical exposure. Paint? Some substance known to the State of California to cause cancer?
- The thing that makes endurance athletes statistically more likely to contract ALS. Whatever that is.
- Saudi Arabia. I spent the summer of '83 there, and there is lots of ALS in the Land of the Flea.
Yeah, that would suck, but all this stuff is speculative. If the culprit is in that list, it was still nowhere near as dumb as our President, who is still firing up cigs.
I'm going to cross this one off my list of things to fret about at night.
Days 1272-1293, January 7-28, 2014. For someone with ALS, a setback in general health can deliver a far more powerful punch than it would in the absence of ALS. Also, it is not unusual for such an event to trigger an apparently rapid acceleration of the progress of ALS.
I have encountered these phenomena twice. First, about a year ago when I crashed during a suicycle training ride. And second, the past few weeks, during which I have had a cold. It wasn't anything dramatic; just a chest cold. But it has hammered me with no mercy.
My first symptoms popped up on January 7th -- coughing and congestion. That night, I discovered that, when I tried to sleep, my airway shut down as soon as I relaxed and my breathing slowed. So, this meant I could not inhale. As you might guess, I could not sleep without breathing, so I sat up all night. So did Jean. 40 hours with no sleep. None.
Then the problem just went away. Meanwhile, Jean and Nick had been working with my doctors to get dope and some machines that might help. The ALS Association came immediately to the rescue with loaned equipment while we waited for insurance approvals and deliveries.
During this time, I was all delirious from the combination of medications. Also, my strength was flagging on all fronts. I could provide very little help when I was being moved from place to place. I had more trouble swallowing, I could cough, but only enough to get the goo up to a point where I would inhale the slime on the next breath. When I tried to blow my nose, my lungs would not fully inflate because the diaphragm was pissed off. Then, when I actually blew the stuff from my schnoz, the power behind the blow was like the sneeze of a chihuahua puppy.
Everyone involved in taking care of me -- Jean, Nick, Melonie (our angelic care provider who is a nursing student), our kids, my mom and dad, Maureen, and probably some I don't recall -- was sleep deprived through the second week, after which, I finally started sleeping whole nights in bed. My dad visited for five days, and I barely remember talking to him. Which reminds me, my voice was total crap because my tongue was working on part power.
I'm writing this three weeks in, and I'd say I feel like I'm about 90% back. I have ridden a few times, the first two of which were definitely mistakes. Yesterday, I had another "I'm not dead yet" ride. I was working my ass off and seeing frighteningly low numbers on my computer. When we were northbound, we were about 3 mph slower than I expected; and when we were going south, it was worse. Then Nick noticed our rear tire was almost flat. All better.
I've known for a long time that getting sick and ALS don't mix well. This is so because of the risk of pneumonia, which means hospitalization. I was never close to that, but I'm here to tell you, the next time someone even sniffles in my presence, I'm moving into a bubble.
Day 1271, January 6, 2014. Wake up at 7:30, toss on clothes, shovel down a bowl of cereal, drive to the end of the road, throw the boards on the snow, stomp in, bomb to the base, breathe deep, get on the 8:00 chair right behind the guy who will flip the switch for the chair on the back side of the mountain. That was the routine Jimmy and I found in 2004 when he was ten years old. It stayed pretty much the same until 2011, when getting me dressed became a group project.
Those were the days.
These days, however, bring a massive je ne sais quoi factor to a not typically exciting activity; to wit: putting on a ski.
The crew was in place on January 2. Dan Porto, Dan's substantial collection of tools, Paul Mohr, Nick Pisano, Jimmy, Jean, Abby, and a Bi-Unique bi-ski on loan from The Adaptive Ski Program. And a furniture dolly.
The plan was to spend some time that evening getting the ski set up for me, and to hit the mountain the next morning. didn't happen that way. We spent the entire evening and the next day working on the ski. The major, resource-consuming issues were: (1) noggin protection and control, and (2) how to put my only assets (my legs) to use.
The melon issues were resolved elegantly with pipe insulation, bungee cords, gorilla tape, and a short incantation that may have been first uttered by Native Americans hunting bison.
The Bi-Unique was designed by a man named Paul Speight in the early 1990s. Paul had no use of his legs, but he had an enormous and powerful upper body, which allowed him to ski on a "mono-ski", a traditional single ski connected to a seat bucket by a shock absorber. The mono-skier is helped with balance and turn initiation by a pair of "outriggers", essentially short Canadian crutches with a ski tip at the end. A mono-ski is a badass piece of equipment, and the sky is the limit on technique and terrain selection.
For paraplegics with less upper body strength and quads, the options were less appealing. The 1980s "sit ski" was essentially a kayak with metal edges under, and it was controlled by dragging a metal grip thing in the snow or the instructor tugging on a tether attached to the back. As a new instructor, I cut my teeth on the sit ski, but I was thrilled with the introduction of the bi-ski because it gave the skier both stability and more traditional turning ability by lifting the skier off the snow into a bucket seat over two skis. As soon as we could get our hands on one, The Adaptive Ski Program owned and offered lessons on the "Milty" bi-ski. The Milty was great as long as you had a backpack big enough to hold a second Milty to provide replacement parts for the pieces of the Milty that seemed to fall off at every turn.
When Paul unveiled the Bi-Unique at a program in Breckenridge, the integrity of the design was so obvious, I wrote him a check for our first one.
In the next 20 years, not much changed about the Bi-Unique, and the one in our living room looked very much like the first one I saw at Breck.
VThe target user of a Bi-Unique has no legs (figuratively), and limited upper body. The more able-bodied skier would carry outriggers and handle most to all of the speed control and turning. The less well-endowed would rely more on an instructor tethered to the back for control. Hand-held outriggers were out of the question for me, so I would be able to help maneuver the ski only by leaning from side-to-side. How could we make use of my legs? This question killed several bottles of libations, a cheese loaf, and some banana bread before we came up with the solution -- short skis strapped to my feet. These babies kicked ass in the living room, but were less effective than we hoped on the mountain.
On ski day, we loaded me in the ski in the house, the guys heaved me onto a furniture dolly, and rolled me to Dan's pickup truck that was backed up to the front deck.
The experience on the mountain was sweet, and we slid to the base area all grinning. At the summit, we had a less-than-artful dismount, and then I made a serious error in judgment. The choices at the top of the area are: turn right, and head to the car, or turn left to ski the back side. It was 3:20, which gave us plenty of time for a run on the back side, and then back up and to the truck... Unless (a) the bullet-proof late afternoon snow made turning the bi-ski difficult, and (b) I bashed my head hard on said surface, say, three times, and (c) a piece of the ski that is important to its stability and safety got bent badly out-of-whack. If ALL those things happened, then we would not have enough time. Indeed, if ALL those things happened, I would, for the first time in 45 years of skiing, be removed from the mountain by ski patrol.
So, the day was a mixed bag. On the one hand, we got me in the ski, we got the ski on the snow, and we got down the mountain. And, on the other hand, we reached the bottom of the mountain in a Ford, and not on skis. But, we learned everything we needed to know to try again on Saturday, and everyone was down to give it another go.
So, we got up the next morning, set up the ski in the living room with the truck backed up to the deck,and got all set to load me in. I had been noticing the wind building all morning, so, out of an abundance of caution, I asked Paul to call the base for a wind report (the main lift is shut down if winds get over 55 mph). As luck would have it, the wind was blowing steadily over 50, with gusts to almost 70. The mountain was closed for the afternoon. Once again, a mixed bag. On the one hand, we had no skiing. On the other hand, if we had gone out on the mountain without checking on the wind, we might still be out there.
When I was teaching at a program for disabled veterans in Colorado in 1992, my student surveyed his options at a trail junction. He motioned toward the steeper alternative, and said "faster, faster, until the thrill of speed overcomes the fear of death". Maybe tomorrow.
Days 1267-1270, January 2-5, 2014. When I chose a career in defending civil litigation, I considered how that fit with what I had seen for myself as an idealistic undergraduate. Back then, I had planned to teach high school and coach football and track. That was an easy sell with Mom, and, most importantly, I had come to find out that the chicks dug it. My primary motivation for going to law school was that it didn't cost much, and it would put off the day when I would have to enter the job market. Secondarily, I reasoned, the chicks would dig it (I neglected to account for the fact that about 50% of the people in Charlottesville were in law school, and the others were in medical school, so this did not prove to be a righteous basis for choosing law school over a bowling league).
In civil litigation, 98% of cases are resolved short of trial. Assuming both sides are reasonable and represented by competent counsel, the cases with merit settle. Assuming competent counsel and courts, the cases with no merit are dismissed. So what is left? That leaves two categories of cases: those where there are legitimate grounds for a difference of opinion about who is right; and those where some party, lawyer or judge is behaving badly. These are the cases where the bulk of the money is spent. The machinery is slow and very expensive. Cicero once wrote of litigation something like so: "I have been ruined twice. The first time, I lost a lawsuit; the second time, I won". Defending companies that have been unfairly targeted protects productive corporate citizens from unjust poaching at the hands of overzealous plaintiffs' lawyers. Whatever you may think about corporations in our society, keep in mind that your granny's retirement fund is heavily invested in the kind of businesses I represented, and your Uncle Melvin works for 3M.
You can see where I'm heading. My line of work was honorable and served some important public policies. I could sleep at night and I believed in my clients in litigation and in business. However, it was not the Peace Corps. And it also wasn't defending our country like the three Schneebecks before me.
When I made my choice, one of the things I decided to do was find some ways to do some actual public service as an avocation. That brings me to the Adaptive Ski Program.
I don't remember how I heard about it, but about a year after I moved to New Mexico I started training to teach people with physical disabilities to ski. Paul Mohr, the same Paul Mohr who helps me keep riding, was the guy who trained me. I gravitated to working with people who could not walk. I liked the equipment. I liked the skiing technique that went along with it. And I liked the people who wanted to learn to ski.
I had found my passion. I taught at every opportunity. Every weekend, occasional weekdays, and vacations. I taught at programs at seven ski areas in New Mexico, California and Colorado. The year before I made partner at my law firm, I skied 71 days. Most people who ski that much wear name tags at work, and they go there around dark, just as the buzz is fading.
In truth, I took the whole thing a bit too far. I probably should have gotten the boot from my employer, my new wife, or both. But before that could happen, I wound up teaching at a weeklong program in Aspen. The students were kids with cancer. Real. Active. Cancer. At lunchtime, lots of the kids had to take chemo. I fell in love with a ten year-old. It was the first time I had been able to envision myself as a parent.
And now here we are. I am an adaptive ski student, with a very long list of problems. However, I have the same brain trust that put me on the suicycle for way longer than should have been possible. My money is on them figuring out how to get me on the bi-ski. Tomorrow.
Day 1266, January 1, 2014. Happy New Year! We have a family tradition of identifying a theme for the new year. Kind of like the Chinese do, for example, "The Year of the Dragon". 2014 is "The Year of Living With Grace". To start it off right, click here for a graceful dead baby joke. If that link failed, click here. Still no luck? Click here. If you tried all these, you are willing to work very hard to see a dead baby joke. Maybe you should think about one more new year's resolution.
New year. Game on!