Days 1108-09, July 24-25, 2013. ALS is not the same in any two people. You hear that a lot as an ALS patient, but I still compare myself to others, especially John Dunbar. John passed away last week. We have been almost stride for stride since we met a bit over two years ago. The only significant difference (and it's a big one) is John's lungs began fading quickly over a year ago.
At that time, John was still riding his recumbent tandem -- lots of miles -- and his legs stayed strong even as we both wound up taking delivery of power wheelchairs the same week.
Meanwhile, I was training to race the suicycle. When I trained for bike racing back in the day, I was pretty geeky about my program. I probably had only one day a week that the ride didn't address a specific part of my racing profile. That meant my rides had loads of variation from day to day.
The suicycle training program was very different. Every time I got on the thing until about June I rode a 15 or 20km time trial. Balls out, the whole way every time. On the days I was on the tandem, I kept track of my data with a high level of attention. I was always on the lookout for the slightest sign that ALS was slowing me down. Eventually, of course, it got me on the suicycle, but I remain convinced the real culprit was the effect of my inability to control the machine rather than a decline in my ability to power the thing. The former problem resided in my arms, the latter would be my legs. My evidence for the distinction has been that the times on the tandem are still level or getting faster. True, there are two people on a tandem, but I've factored that in and the numbers still look good.
The big picture? I think the intensity of the cycling is responsible for my respiratory function staying relatively high. How long will that hold?
Many times in the blogs I have quoted Buddha: "Suffering comes from resisting what is". Turns out that wasn't Buddha. But there is a similar teaching in Buddhism. And in a good number of other theologies and philosophical writings. Since its origin is uncertain (and it is grammatically incorrect because the sentence ends with the preposition "it" -- properly structuring the words would be quite easy, e.g. "suffering comes from resisting what is, bitch"), I have decided to modify it to make it sound less like something Yoda might say, correct the grammar, and clarify the message. Thus, I may be quoted as having written "suffering comes from resisting the truth".
In this way, denial is the enemy of peace of mind. [you can also quote me on that, because I just made that mofo up... bitch] A few months ago, I wrote about my fantasy that ALS would just go away, and that is a fun thought, but giving it too much airtime is dangerous. Given that nobody has ever been cured of ALS in the history of ever, isn't it a better idea to accept that fact as applicable to me, be realistic about what I have left, and live each day accordingly?
Well, here goes. Every region of the body that ALS targets is compromised in my case. I have yet to suffer from shortness of breath, but the numbers don't lie, that's coming. Tomorrow is my 53rd birthday. I'm going to say the likelihood of having a 54th is about 50-50, and a 55th is not likely.
There, I said it (bitch). So, how should we spend today? How long will my time trial-enhanced diaphragm hold out keeping me comfy? No idea about the last one, but I'm not about to slow down. In fact, it's about time for bike shoes...
Every day, then: 1) think about the finite time left; 2) decide how to use this day; and 3) be grateful for the heads-up.
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Days 1100-07, July 16-23, 2013. So John Dunbar, like everyone before him, died before an effective treatment could be brought to market. I have wasted little time or energy being angry about ALS or my unfortunate luck in snagging a piece of this almost uniquely devastating disease (while ALS sucks big camel johnsons, it's really not the worst draw -- to wit: Huntington's disease, which is pretty much ALS plus dementia). But the availability of experimental treatment options is one that makes my blood sizzle.
Start with the fact that, if you get ALS, it will kill you unless something gets you faster. Stephen Hawking is a high profile red herring. Hawking was diagnosed in 1963. He has a motor neuron disease, but it ain't ALS. People with ALS don't live 50 years after diagnosis. Hawking himself acknowledged as much in an interview last year. So let's forget about a life with a plateaued disease and computers running your multi-faceted empire. That's just not the way ALS works.
What other diseases of mid-life have such a hopeless prognosis? Pancreatic cancer comes to mind, but I cannot come up with a long list.
Here is the drug development pipeline in a nutshell. Step 1: research scientist comes up with a theory -- let's say "di-hydrogen oxide relieves constipation". He or she finds grad students to help test the theory. Grad students find plugged up mice (or they plug them up manually), and give them di-hydrogen oxide. Well, half of them get di-hydrogen oxide, while the other half get placebo. Did di-hydrogen oxide help more than placebo? The grad students write a paper discussing same. If it is well-written, the scientist adds his or her name to the paper (first in the list of authors). If the paper is crap, the scientist gives appropriate feedback (a grade of "B" because grad students always get A's or B's), then the scientist tries again the next semester. Step 1 takes a year or more.
Step 2: (assuming the paper was not crap, and assuming the test revealed that mice on di-hydrogen oxide found blissful relief from di-hydrogen oxide) the scientist looks for an appropriate conference on constipation at which to present the results. At the same time, the scientist hunts for a learned and peer-reviewed journal to publish the paper, because this will get his or her department head off his or her ass for not having published any research since word of the affair with the undergrad research assistant got out over a year ago. Step 2 takes about a year.
Step 3: find a drug company willing to pay for human testing. Step 3 can take years.
Step 4: Phase I clinical trial. This is a safety investigation. Efficacy will be observed but is not established by a Phase I. FDA has to approve the plan, participants must be recruited, and the plan has to be executed. Results need to be analyzed and published. Depending on the time needed to evaluate safety in patient use, Step 4 might run from 6 months to years.
Step 5: (assuming di-hydrogen oxide didn't kill anyone) more people in a study that still primarily addresses safety, but does give more information about safety. This Phase II study will examine different doses, looking for adverse events and effectiveness. Often, Phase II studies raise more questions than they answer. This means more Phase II studies may be necessary. Phase II can easily take years, and almost always takes at least a year.
Step 6: (if di-hydrogen oxide still isn't killing people, and seems to be unclogging them better than placebo) Phase III testing. This will be a big study with lots of people, and probably several dose options. It will also last a long time if the drug is one that may be taken over a long period of time. Publication, presentations, and an application to FDA for approval to market the drug at a minimum. Phase III is often well over a year.
If it all went well, di-hydrogen oxide is on the market only about six years after the first mouse obtained glorious relief. In the meantime, millions of humans were suffering from constipation with access to only less effective treatments. Is this OK? That is an ethics question that depends on an examination of the risk-benefit factors.
In our example, constipation is a pain in the ass (oh, yes it is) but is a killer only in extreme circumstances, and there are treatments on the market. So the level of risk we should be willing to tolerate prior to accumulating solid proof of safety and efficacy will be relatively low.
Now let's talk ALS. If you get it, you are going to die. So when experimental treatments are showing promise in the context of ALS, we will have more tolerance for risk. Right? Wrong. The rules (with minor exceptions) are the same for a drug that might eradicate cancer as for one that might help grow longer eyelashes.
That said, there is a process that can be utilized to allow "compassionate use" of a drug that is in the pipeline. To do this requires the cooperation of FDA and the manufacturer. And guess which one of them is usually the turd in the punch bowl? Hint:not FDA.
Why wouldn't a manufacturer jump at the chance to increase the use of the drug sooner? The trial process essentially allows the sponsor to hand pick the patients. This, of course, maximizes the likelihood of positive results. The cost, in the context of ALS, will be about 5,000 lives per year while the cure is in the pipeline. A necessary cost? Let's look at a real life example.
A company called NeuralStem has developed a stem cell therapy that was stalled by George W. The Phase I took place and at Emory University in Atlanta. More than half of the patients responded to very low dose injections of stem cells into their spines. By "responded to" I mean they have had no progression of the disease in more than two years since the injections. One patient has actually seen improved function. Here is how the principal investigator describes Mr. Harada on the University of Michigan's website:
Ted Harada, a 40-year-old man diagnosed with ALS, who received stem cell implantations to his spinal cord in two separate surgeries as part of the first-ever FDA-approved trial of a stem cell therapy for ALS, talked last week with Crain’s Detroit business reporter Tom Henderson. Harada said he’s still feeling the positive effects he attributes to his second surgery, which took place last August.
“I’ve been doing great and feeling great.” Harada told Henderson. “Just now, the left leg showed a little bit of weakness returning, but I’m still so much better than I was before the surgeries. It’s the first time, since August, they’ve noticed any slight weakness.
“It’s clear from the data that the injections reversed my symptoms and slowed down the progression of the disease. I’ve received a blessing. I almost forget I have ALS. I don’t have the constant reminder of having to use the canes. Now, I don’t think about ALS every day. Every couple of days something happens and I think, `Oh, yeah, I have ALS.’ ”
Taubman Institute Director Dr. Eva Feldman received FDA approval in April to move the trial to Phase II, which will study efficacy as well as safety. Patient recruitment has not yet started for that phase of the trial.
No therapy anywhere ever has either stopped or reversed ALS symptoms in even a single patient before this trial. Moreover, the trial revealed no adverse events of significance. Plug this into a risk: benefit computer and I come up with a risk factor of zero,and a benefit factor of infinity. But please check my math.
So when can the rest of us try it? Phase II will enroll 18 patients...
That curdles my milk.
Days 1094-99, July 10-15, 2013. John Dunbar served his country. He was a husband. He was an engineer. He loved mountain biking and sought out adventure. John was diagnosed with ALS in April 2010, just a few months before me. He attempted Leadville with me in 2011. He beat me the only time we raced our powered wheelchairs. John passed away on Friday. ALS sucks.
Days 1084 -1093, June 30- July 9, 2013. Wisconsin. Get some coffee, it was a busy week.
Part I: The North Woods. Jean, Jimmy and I flew to Minneapolis on Friday, where John, Dan and Paul picked us up. They looked surprisingly bright-eyed, what with having driven 21 hours hauling the tandem, the suicycle, and the rest of our stuff. Three hours later, we were at a fish fry near John's family cabin.
We checked in to a lodge in nearby Seeley, Wisconsin and woke up to wild rice and blueberry pancakes right at the crack of 11 am.
After a 25-ish mile ride over rolling Wisconsin roads, we gathered up for steak grilled for us by Cindy's crew at the Sawmill Saloon. Jean made lots of friends at the Sawmill, and, when the rest of us were ready to head for bed, Jimmy shouldered his mom and carried her back to the lodge.
Sunday morning (you know, after the blueberry pancakes), we drove to Bayfield, a charming Lake Superior port town. We rolled onto a waiting ferry to Madeline Island, where we (when I say "we" in a context other than actual pedaling of a cycle, I generally mean John, Dan, Paul and/or Jimmy) unloaded the bikes and toured the narrow island. For the first time, Jimmy was my captain on the tandem, and we chewed up the miles happily, stopping only briefly (until mosquitoes began to inflict damage) at the far end of the island.
Back to the lodge for more fabulous food, especially the deep fried, buttered cheese curds. After chain-eating four baskets of the Wisconsin delicacies, along with several pizzas, we headed for yet another mosquito-dodging trip to the lodge.
We gave some serious thought to canceling the next leg of the trip, but decided the 20 or so people we were meeting in Madison might not think too much of another five hours of driving even if they would be joining us in such a beautiful place. Also, Cindy (the owner of the Sawmill) had to be getting tired of us showing up for breakfast at 10:59 every morning for breakfast that ends at 11.
So "we" (here, I mean John) drove to Madison and dropped Jimmy off at the airport so he could head home to begin training with his UNM Soccer Lobos.
Part II: USA Cycling's Para Cycling Nationals.
After more cheese curds, we got ready for the course surveillance and, hopefully, a pre-ride. Where I left off last week was explaining that it appeared my climbing ability was limited to about 3% grade. The course profiles available online showed the nastiest hill with different grades -- 2% and 4%, respectively. Needless to say, I was looking forward to seeing it for myself.
Tuesday afternoon we headed to the course and drove a lap. The news was not good. There were two scary hills, both easily over 3%. We had picked up my dad at the airport on the way to the course, so we had plenty of hands available to do all the prep work. But would the ride be a very short one, or would I be able to make the length of the course? The suspense was killing me.
The first hill -- the smaller one -- was a slow grind, but I made it with little difficulty. Before I reached the top, however, I was fresh out of gears, which worried me a bit, because the next climb was considerably longer and steeper.
John and Dan were riding beside me, so I wasn't worried that I would just stop, roll backwards and smash into the Expedition behind. But a lot of people were in or on their way to Madison to see me ride, and I was really hoping I wouldn't have to say something like "yeaaah, well I discovered I can't climb that hill". To which they would respond, incredulously, "what hill -- you mean you can't climb THAT hill?!"
I tried not to look at it as we approached, but there it was staring at me like an angry linebacker. We started up,and I pretty quickly was out of gears. My Garmin reported 5% for the grade. That was good news and bad. On the one hand, it meant I could still climb 5%, but on the other hand, I was already playing above the rim, and still couldn't see the top. I was completely focused on maintaining a regular cadence as the climb continued, even after I ran out of easier gears. After what seemed like a very long time, I got to a point where I could start adding gears -- sweet! I would be able to ride the course!
As the afternoon wore on, John, Dan and I stopped several times to make some adjustments in the brakes and shifters that had the bike responding better to me than it has in many months.
The next day would be an actual rest day, and I would be able to spend some time with our dear friend Andy Kain, and one of Jean's sisters and her husband Eddie The Plumber (his actual name according to Joanne). They would all be arriving the next day.
On race day, with a few exceptions, things went as planned. I had heard that my two fellow T-1 competitors would not be riding, which meant that all I needed to do to win a second consecutive national TT title was exactly what I had done during the preride.
These pictures show most of the steps involved in getting me on the suicycle. It's a process that has steadily become more complicated (and dangerous) over the 15 months I have been on that thing.
The race began as planned. The shifting and braking were smooth. I crested the second hill without difficulty at 2.1 km, and quite suddenly everything turned to dog poop. I couldn't hold my head up as I descended from the high point. My field of vision was limited to an area from my feet to the front wheel. As I rolled down the hill, braking aggressively, my balance was clearly off. I had to get forward vision or it would be only a matter of time -- and not much of it -- before I hit the deck. I discovered that, if I could lean left, then pull my shoulders back quickly, my noggin would follow, if only momentarily. The problem with this, aside from it being a brief and temporary fix, was that my head would only come up high enough for me to see just over my glasses. My prescription glasses. That meant my best moments of vision over the remaining 6 km would be sort of sideways and definitely out of focus.
I came up with another approach. With my head hanging down I could readily make out the yellow center line, so, if I kept my wheels just right of the line, I could maintain a straight line. I took this a bit too far, however, at the halfway point where I needed to turn the bike around. The suicycle needs a whole two-lane road to pull a 180, but guess where I was? Yep, youbetcha, I was hugging the yellow. I gave it my best half-focused and very disoriented effort and wound up in the gravel on the far shoulder. A race official got me back on the road. I don't know what types of assistance lead to a DQ, but I figured he wouldn't help me out without being asked and then throw a penalty flag.
Once I was homeward bound, things did not improve. I was back to my yellow line, working my way to the finish, when I heard the first whistles from Team Oso High. I pulled off the road, where Paul helped adjust my head holder-upper to give me more support. This helped briefly, and then I saw Andy and received another adjustment. Again, this was only temporarily helpful, perhaps because my neck was done for the day, but it lasted long enough to let me see some of the difficult final descent. I crept toward the finish, l listened to the announcer tell of my impending completion of the race. After he covered my name, hometown, and every race in my amateur career, some of my better training rides, and my most significant home improvement projects, there was an awkward pause while I ground out the final crank turns needed to get me over the line.
I coasted to a barrier fence where I lifted my head long enough to see one familiar face -- National Team Coach Mike Durner, without whose help I would never have pulled on a Team USA jersey. Or, more accurately, stood there while Jean pulled it on me.
As usual, John and Dan showed up at the right moment (right before my head would have fallen right to the pavement this time). They held up my melon and jogged me back to the truck.
My time for the 9 km course was a comically slow 57 minutes. That is a little more than 20 minutes slower than my fastest 10 km RUN. Please read that sentence one more time.
From there we headed to the bar where the para-cycling awards would be distributed.
We had a room reserved where we would celebrate the retirement of the suicycle with the 20 or so Bannons who made the trip was from Peoria, Dad, John, Andy, Dan, Paul, the Freeman family, and our friends from the para-cycling world.
It was humbling to hear paralympians Greta Neimanas, Clark Rachafal and Sam Kavanaugh and Greg Miller talk about our time together over the last year. I think they must not have realized that only a few short hours before, it had taken me almost an hour to ride 9 kilometers. Good thing I was on a trike -- a bike might just tip over at that speed.
Here's a little secret about the race. You've seen it a dozen times on SportsCenter. The outfielder is drifting back for a routine fly ball. He catches a cleat in the grass, tumbles ass over tea kettle, pops back up just as the ball caroms off his shoulder, then his head, and settles softly into his glove. And so he winds up with a Top 10 Play by making something easy look impossible.
During the evening after the race, I heard people describe my ride as "inspirational", "determined", the product of "sheer willpower", and Coach Durner even thanked me for "doing something [I] shouldn't have been able to do". While I was and will always be grateful for the words, the truth is that, like the outfielder on Sportscenter, I nearly snatched defeat from the jaws of victory by forgetting to have someone tighten the belt that anchors my head holder-upper before I started my race. So I was too focused on smiling for the photo-ops, and I neglected to activate the oldest piece of adaptive equipment in my arsenal. The head holder-upper has been in use since before Leadville in 2011. D'oh.
So, that's it for the para-cycling experience. When I sat at dinner with Jean, Jimmy and Abby in January of last year and told them about my proposal, I had a pretty good idea where the bike part of the whole thing might lead, but it never occurred to me that any part of it would happen in 2013. And, like a famous dirtbag and scoundrel, I failed to appreciate that the most important pieces would be "not about the bike". The real beauty to the experience was the people who made it possible and/or more fun.
Thank you all.
Jean: Everything. Especially your love. Especially for not telling someone in some ER to pull the plug.
John Blueher, Dan Porto, Paul:Mohr: Teammates, mechanics, inventors and so many other roles.
Abby: Inventing and building the original grip substitute device.
Jimmy: Grip and shifter revisions, tubeless tire maintenance, weekly list of adjustments, design and construction of the reverse mount front hydraulic brake lever that put an end to endos.
Nick: Inventing and building the elephant ear shifter that allowed my knees to distinguish between big gears and little gears.
Andy Kain: Sherpa in Montreal, mechanic, keeping my head from falling off in Madison.
Chris Dineen: Inventing and building the head holder-upper.
Maureen Bannon: Sherpa in Rome, mechanic (!)
Mom, Dad, Aunt Bea, Aunt Barb: Support and mechanics in Augusta and Madison, and at the Olympic Training Center (Dad).
Steven Peace: Introducing me to the suicycle, giving me a steering damper made by Italian trolls, constantly encouraging and supporting me (except after the big crash in January when he encouraged me to take up video gaming).
Geoff at Trykit: Making my axle in time for me to get to Montreal where I qualified for the US National Team on what I now know to be the fastest course in the world.
Andy Porto: Fixing my axle after the "Guardrail Incident".
Damian Calvert and Michael Donovan: Training rides in 2012.
Sport Sytems (Duane, the Davids, Zack and Phil): Major mechanical work and great ideas.
Sport Sytems Mountaintop Cycling: Support of every kind every step of the way.
Brad at ZIPP:Hooking me up with a sweet 404/808 Firecrest wheel set that made a cool purring sound when I was fast.
Pam Fernandes and the OTC staff (except the tool who was famously quoted screaming at a group of disabled cyclists -- including me -- "what's wrong with you people?!", to which one quick thinker responded "where shall we start?"): Teaching the crash course on para-cycling in one nearly perfect week at the Center in Colorado Springs.
Coach Mike Durner: Getting me in the World Cup in Italy before he had ever seen me turn a pedal, putting me in a stars and stripes jersey for the World Cup final in Canada.
Team USA (particularly Greta Niemanas, Clark Rachafal, Dave Swanson, Ryan Boyle, Allyson Jones, Sam Kavanaugh, Steve Peace, Muffy Davis): Welcoming me to the team immediately and making the events in Rome, Augusta, Baie-Comeau and Madison that much more fun.
Whoever at the US Anti-Doping Agency selected me for out - of - competition testing in November, giving me such great material for the blog.
So I will submit my retirement papers to the USOC and USADA in the next couple of weeks. Just like Lance Armstrong did a few years back. Unlike Lance, however, that won't open the door to a doping program targeting a comeback. If only it were that easy...
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Days 1074-83, June 20-29, 2013. So we are running out of ideas for making the suicycle go and stop. This week's test rides were less than remarkably successful. Safety was not the issue. Turns out, it's very safe when it is going as fast as I can make it go.
We just don't have a good way to get power out of my legs and onto the pedals. So when I'm riding, my heart rate hardly elevates. What's happening? Well, I think grip is the problem. Imagine riding a bicycle where you maintained control over steering by having a rope wrapped around your wrist, with the other end looped over the handle bar, but your hands weren't holding the grips on the bars. Don't tell anyone at USA Cycling, but that is sort of what we have going on. So when I apply power, the first thing that happens is the wrist things stretch as far as they can. This is not much of a pull on my shoulders when I'm on a flat surface, but going uphill, it feels like I'm going to hear that suck-pop sound that a chicken thigh makes when you pull the leg off.
At a certain grade of climbing... The suicycle stops. How will this play out in Madison? If you have a background in physics, you may know without me explaining. For the rest of you, and for Virginia Tech graduate students in the physics department, here is the simple story. If I find myself on a hill with a grade of somewhere around 3%, the suicycle. Will stop.
If this happens, other riders will hurl insults at me as they go by, and after they have all gone by, I will turn around and ride back to the start. Unless... I had descended a 3% grade on the way out, in which case I will stop on the way up that hill. In this manner, I will be forever stuck between these two hills unless someone rescues me.
It would be prudent to find out about the gradient of the climbs in advance, no? Yes. And I have done that. There are two published profiles of the course. One shows the steepest climb at 2%. The other shows the steepest climb -- the same climb -- at 4%.
We have decided to go see for ourselves.
Days 1064-73, June 10-19, 2013. The Flying Couch.
Anna O'Connell is a financial adviser (ours, actually). She is also a game-for anything athlete. Several weeks ago, we took a spin around the park on the tandem. She brought dinner to us on Friday because she and her family are so nice and didn't want us to go hungry while Jean and her sisters are enjoying a rum-saturated ten day stay on St. John.
I asked if she would be willing to captain the tandem on Sunday. She was so excited, I felt certain she had not understood the question. So I asked again and she was in.
How shall I say this? There are some people who are taller than Anna. By the time I got outside to load into the tandem, every cushion and pillow we own was in the driveway, and there was a serious project underway. The goal of this undertaking: making Anna's feet reach the pedals of the tandem. The winning combination was cushions from a recliner on the back porch, a cushion from my living room recliner, and a pillow that was definitely designed to help someone recover from surgery on the lumbar spine or a joint replacement.
The visual effect: The Flying Couch. And off we went with a Father's Day entourage that included John's son,Clayton, and Jimmy.
Days 1057-63, June 3-9, 2013. The Oso High Mountain Bike Race.
A good time was had by all. The only problem was that more people didn't have a good time. Angel Fire took over the promotion of the race, and they insisted on making it part of a busy weekend of downhill mountain bike races that were already planned. Problems were four: 1) the date conflicted with a big mountain bike race in Vail; 2) the date conflicted with a big road bike race in Los Alamos; 3) Angel Fire forgot to advertise; and 4) Oso High is a cross-country event. Cross-country riders have about as much in common with downhillers as milers have with shot putters. They can ride the same bus, but there's no synergy in the mix. And, like the shot putters, the downhillers are responsible for the empty Big Mac boxes and most of the Jack Daniels bottles.
All of this is to say the Oso High fields were small, though fiercely competitive. Speaking of small, ten year-old Luke Mather was my hero. He completed the Cat 3 course in about 90 minutes. The route is four miles and includes 3 uphill sections I never negotiated cleanly when I was a Cat 1. The one mile downhill is nothing short of terrifying - tight twisted single track with trees slapping at you, rocks in unfortunate spots and ruts as deep as Luke waiting to swallow you up. Luke finished because he "kept thinking about Doug" while he was out there. I wish I could have been out there with you, Luke. The mountain EMT crew gave Luke's dad, Geoff, a "father of the year" recognition for sending Luke out on the course. I'm with Geoff, though, kids learn valuable lessons from horrible parent-mediated experiences. I would never have become the skier I was if my dad hadn't left me to ski "Organgrinder" on my own when I was Luke's age. Take it from me, Luke, you'll never forget Sunday's Oso High race!
Oso High in pictures!
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Days -, May - June 2, 2013. Nut cutting time on Nationals. Here's the scoop. USA Cycling's Para-Cycling Nationals is July 3-7 in Madison, Wisconsin. The time trial event is also serving as the selection event for this summer's UCI World Championships in Canada. The USA team will be the eight men and eight women who beat the national team standard for their class by the greatest margins. I will not be one of them. My goals for the event are more modest: 1) no body bag or ambulance exit from the race course; 2) not be the cause of a yellow flag delay in the race; 3) no crash; 4) qualify for the issuance of an official finish time; 5) have fun; 6) look cool; 7) win. In that order.
The keys to all of the above are the same -- smart bike modifications and controlling the increasingly pesky tremors in my legs. Today we are talking about the bike.
Problems: My hands are damned near useless. I have very little grip strength -- can't hold a tennis ball. My index fingers are actually paralyzed, as are my thumbs. My arms are very weak -- when I lay flat on my back with my arms at my sides, I can lift my hands to vertical (with my elbows still on the bed) if and only if I turn my palms up first. That is my only remaining measure of biceps strength. When I am standing with my hands at my sides, I can move them forward, to the sides or back about two inches. This limitation on a victorious fist pump is a real problem for a bike racer. My neck is not strong enough to hold up my head if I'm leaning forward. My legs shake like I'm standing on a paint mixer. That's about it.
Bike modifications completed or in the works: 1) Hydraulic front brake with the lever facing me. This is necessary on account of because my hands can't squeeze the brake levers but they can push. Hydraulic? Because this setup only works on the front wheel, so I need lots of stopping power from my one brake. 2) Grip assist devices.
These keep my hands from flying off the grips when I hit a dangerous road hazard such as a stripe painted on the asphalt or an ant. 3) Rear shifters. Electronic, you bet, but these puppies are the tiny little buttons near my palms that require only a light bump from my hands. 4) Steering dampers.
These find their utility in keeping the bike going more straight when my linguini-like upper extremities are not sufficient. I have two different steering dampers. The first was a gift from my friend and National teammate Steve Peace. It was made by Italians with a very short to-do list. The second is an expired bike inner tube. This is the one that works at the industrial strength I need. 5) The Head Keeper-Upper. This slick design provides support and flexibility by linking the back of my head to a belt at my waist with a bungee cord. When it was invented two years ago as I prepared for Leadville, it was a long bungee providing modest melon support. Over time we have reduced the length to get a bigger boost for my noggin, which is obviously getting heavier as I get smarter. 6) Front Shifter.
This is the newest innovative development for the suicycle. I can't activate the levers with my hands, so we are trying to give the job to my left knee. 7) The Sexy Socks. Everyone will be wearing these. Right after Hell freezes over. When my ankles extend beyond a certain point, an ALS present kicks in -- hyper reflexes that cause my legs to tremor violently. This happens once with every half stroke of the pedals. The sexy socks limit the extension of the ankles, thereby reducing the "clonus" reflexes reflex. Bam. Genius.
If any one of these systems fails on race day, I don't finish. Best case, I get picked up by a race official with donuts in his car. Worst case would be worse than no donuts.
The competition itself is way down on the priority list, but here is how it goes. I will be competing against the only other T-1 in the USA. His story is more fun than mine. He is getting better after a spinal cord injury. Jay is also much younger than me, so if he beats me, I will have that excuse working for me. I reserve the right to come up with more excuses as the event draws nearer.
Days 1043-51, May 20-28, 2013
A Travel Guide to New York City for People with ALS:
So we took a week long family vacation to the Big Apple. I could tell the story of the trip - it would be entertaining because we had Jimmy for a few days, both kids for a few days, and Abby for a few days, but you found this under ALS blogs, so I'm going to stay on topic, hmmkay?
Getting There. Pray for your wheelchair. And have the biggest person in your party give every baggage handler an intimidating stinkeye.
Getting Around. This is an excellent adventure.
Cabs. There are many accessible cabs, but they are not limited to serving people with disabilities, so you are in Darwinian competition with the rest of the travelling public. Good luck with that.
The New York Subway. In theory and on paper, the subway is accessible. The subway maps have an icon of a little person in a wheelchair next to each stop that has an elevator. This means you have to do some planning or you can find yourself stranded in an exit area with only stairwell access. About 20% of the stops have elevators. To make this even more exciting, at any point in time, about 50% of the elevators are out of service. And to further jack up the nervous system, this changes during the day for no apparent reason. In this manner, we boarded the subway at Times Square to go see the Mets suck (they didn't disappoint). Three short hours later, we returned to Times Square (same train, same station) and found the elevator we had used to come down to the tracks was out of service. Trapped. We had to take a train to Grand Central Station and walk the two miles back to our hotel. According to the Metropolitan Transit Authority website, on any given trip, a person who uses a wheelchair has a 100% chance of finding 50% of the needed elevators out of service about 76% of the time.
There is also the matter of the gap. There is a gap between a train and the loading platform. This is necessary and good. The gap will vary from place to place on a platform -- sometimes narrow, sometimes wide, sometimes up, sometimes down. And sometimes up and wide. We discovered this on our first platform, but we also observed that every platform has a handicapped loading area. Perhaps they have a little gap-spanning ramp in these locations? Nope. As far as we could tell, the only purpose for the handicapped loading area is to make it easier for the people from the morgue to find the people who don't clear the gap. The gap technique we used with success was to line up the chair straight on, close my eyes tight, and put the hammer down while Jimmy ran interference.
The Streets of New York City. The best way to navigate the City is the sidewalks. They are massively crowded but people are polite (or deathly afraid of a 350 pound chair with a distracted driver). There are, however, some hazards. Many of the curb cuts appear to have been carefully sculpted by drunk jackhammer operators with union grievances. The biggest street surprise, though, is the northwest corner of 57th and 7th, which has no curb cut at all. Every other corner we encountered in Manhattan had two cuts, but this one had none. And it's hard to imagine why. The intersection sits two blocks from Central Park, two blocks from Broadway, and five blocks from Times Square. The City people know about this corner. The last of the dozen or so times we went through this corner, I decided to take a shot at ramming the short curb to pop up on the sidewalk. A very large man saw the setup, stepped over and grabbed the chair with one hand, and up we went. And then he vanished. Abby and I stared at each other for a moment. The chair really weighs 350.
Things to Do. The Empire State Building is number one. A wheelchair means you don't wait in any lines anywhere. We arrived at about sunset. There were long lines for everything. We were whisked to the top in about as much time as it takes the night security guy when the building is empty.
The Mets. If you have ALS, they will lose if you go see them. But don't think you're special. They lose every night.
Central Park. Memorial Day was the sort of day they have in San Diego all year. In New York, such a day brings everyone to the Park. There must have been 100,000 people in the Park on Monday. And they were all following the rules, right down to bikers choosing the appropriate lanes ("slow" or "fast"). Abby, Jean and I took a five mile walk around the Park for about an hour and a half. I never saw a person with less physical ability than me. This made me mad and prompted me to ride a pissed off half hour on a stationary bike when we got back to the hotel. That helped. So did going to see Mamma Mia that night.
Shopping. Some of the high end jewelry stores are surprisingly not accessible, but check this out. I was hoping to pick up Rolex watches for John, Paul and Dan. The two stores recommended by our hotel concierge were not accessible. After the show Monday night we learned that there are Independent Rolex Dealers all over Manhattan, and they will come to you if you have ALS. We met two of them at 53rd and 7th. They had a wonderful selection of watches, and we found a perfect match for each of the bike guys. And we came in far under budget. The three watches combined set us back less than one half of one percent of the average retail price of a single Rolex Submariner at a brick and mortar store. Overhead is everything in the City. Here is a photograph of me with Mr. Johnson after we made our purchase.
More images from the Big Apple:
Days 1037-39, May 14-16, 2013. One of Jean's two sister's sisters named Mary (yes, you read that right) is visiting this week to help with graduation activities since I have the party-preparation utility of a shrub. Mary Lorraine (who goes by "Lorrie" to reduce confusion with the other Mary) is a runner (which also reduces confusion with the other Mary) and a physical therapist (further reducing confusion with the other Mary). With Jean busy at work and Dan out of town (increasing the price of rum in Wisconsin by depleting its supply), Lorrie offered to captain the tandem.
Lorrie was not a cyclist before the adventure. That has not changed, but she does have a great sense of humor. Here is a selection of quotes from the two hour cruise:
1. "Shift! "
2. "What should I do now?" "Pedal."
3. "Oh, sh&! I'm panicking".
4. "Right." "No, other right".
6. "Have I broken it?" "No, you have the brake on. "
7. "Shift. Shift." "Which way? " "Left... No, the other left."
8. "I can't understand you".
11. "Shift. "
Get the idea? Every now and then, when Lorrie was in the right gear and otherwise happy, she would relax and pedal. Here is a secret about Lorrie. If she chose to learn the tricks, and if she could shut up for a while, she could be a ferocious climber like her sister who is not Mary and who is about Jean's size and sleeps with me.
Days 1034-36, May 11-13, 2013.
AHS Sports Update.
Abby delivered a shocker in the finals of the 100 hurdles on Saturday. Her personal best coming into the meet was 18.0. In the preliminary round on Friday was she ran 18.02. Saturday morning a few things came together at just the right time, and she popped off a 16.46. Most athletes quality for the New Mexico State Meet the easy way -- by placing first or second in their district meets. Abby was third, but she's still going to State because her time met the demanding qualifying time standard for the State Meet.
Later on Saturday she picked up another third place in the 300 hurdles by running her second fastest time ever. Then her 1600 meter relay team snagged a place in the State Meet by taking second in the final event of the meet. Not bad for a sophomore. Heck, that wouldn't be too shabby for a senior! On to State next week.
Jimmy's club soccer team lost their final game Sunday and saw the season come to a stop.
However, at the AHS annual Sports Awards Banquet tonight, he was named Male Athlete of the Year! But check this out -- he was also tapped as the 2012-2013 Scholar-Athlete of the Year for his ridiculous GPA and multiple-sport awesomeness.
Proud parents? Oh, yeah.
Days 1030-33, May 7-10,2013. AHS Sports Update. Jimmy's club soccer team has qualified for the finals in the New Mexico State Cup, after running the table in round robin play. The championship match is Sunday.
Abby qualified for the finals in her district meet in both the 100m hurdles and the 300m hurdles. Looks like she's peaking at the right time. She ran a massive personal best in the longer race today. She goes to the finals seeded third in the 100s and second in the 300s. A second place in either will qualify her to run at the State Meet next week. Finals are tomorrow.
Day 1029, May 6, 2013.
My point of view: Andy Porto is the Hero of the Week.
Jean's point of view: Andy Porto is just another son of a motherless goat to earn a spot on Jean's Suicycle Sh@! List.
In the Bridge Incident I described two entries ago, there was damage to the trike I didn't mention. The rear axle, which is the part that makes it a trike and not a bike, was bent by the impact with the bridge's guardrail. This is also the part that you have to get custom-made by a machinist in England, who has a six month waiting list for such things. So it's bent.
When I was in high school in rural Northern Virginia, I had three favorite ball caps. "Dallas Sucks", "CAT" and "Vail". The first two suggested, quite emphatically, that I was a cracker or possibly a bit of a redneck. The third was either stolen or implied that I was only part cracker/redneck. The truth was that I was, like Chantilly, Virginia, itself, caught between two very different categories of people -- cracker/redneck and yuppie-in-development. A powerful argument can be made I was leaning toward the former when I add one more fact about the Vail hat. I didn't buy it in Vail; I bought the patch in Vail and I hand-stitched it onto an old cap after I cut off the original Exxon logo.
Now think about all that for a moment.
Anyway, you can certainly take the boy out of Chantilly, but if he bought a pair of Dingo square-toed boots at Chantilly Cash-n-Carry, no amount of time or education will ever take the redneck engineer out of the boy. And that is how, only three days ago, Jimmy wound up standing on a pipe attached to the axle of the suicycle trying to bend it back into a straight line. All because of my baseball caps.
Fortunately, John came along right about the time I was thinking "so, if that won't work, maybe we should try the vise". He and Dan scooped up the trike and left to see Dan's brother Andy Porto, who used to be a machinist. That is apparently the equivalent of saying Tom Brady "used to be a quarterback". Andy was able to identify and fix the problem with the axle and the wheel (we didn't even know about that one). He did this to the 1/1000th of an inch.
Thus, Andy Porto has kept the suicycle on the road for another adventure, and earned the Hero of the Week title, and a spot on Jean's Sh@! List.
Days 1026-28, May 3-5, 2013. A Dream Returns Me to Denial. Back in the day when we were going through the diagnostic process that led us to ALS, I was the King of Denial. Right up to the moment when the nice man with the pink bow tie delivered the news, I expected him to say "this just doesn't look like ALS to me". In the nearly three years since, I have become a true believer. A couple of weeks ago, a wonderful thing happened. Or maybe it was terrible. It will be some time before I know which.
You know the kind of dream. You are cornered in the dark building by the monster preparing to take a bite out a moist and meaty part of your body. You wake up, your heart is hammering, you have sweat on your forehead, and you think "whew -- good thing that wasn't real". And suddenly everything around you takes on a glow because it's all better than being eaten.
So I had a dream that I was dreaming and woke up from the dream to discover that the whole ALS thing was a dream. It was a very happy dream indeed. Then, of course, I woke up for reals. And in the for reals world, I can't scratch my nuts when I wake up.
This got me thinking. What if ALS just went away? What are the Top Ten things I would want to do that I can write about in this PG-13-ish blog? Here they are, in no particular order.
1. Tell a story at the dinner table.
2. Take a walk in the park with Jean, holding hands.
3. Drive my old VW.
4. Bite into a green chili bacon cheeseburger in Hatch, New Mexico.
5. Pet our dogs.
8. Type the last blog entry (with my fingers).
9. Hug everyone. And...
10. Scratch my nuts when I wake up.
The puzzling and sort of mystical part of this is that this dream has stuck with me, and popped up in the middle of the day. And I've repeatedly suspended disbelief and rolled with it. What this looks like is bizarre. I find myself -- on the tandem, for example -- watching people do things and looking forward to when I will be able to do those things again. When I'm in the zone, I fully believe I'm going to be the first person in the history of ever to recover from ALS. So I'm in intermittent denial, and it actually feels kind of good to go there.
Today during our luscious 30 mile ride, I saw people riding some sweet bikes and I found myself making note of a couple of equipment features that I will incorporate into the next bike I put together. Is this a bad idea? I think if I don't let it take over my outlook on life, it's a harmless vacation from ALS.
One more thing -- I forgot no. 11 on the Top Ten list:
11. Drink a beer.
Days 1022-1025, April 29-May 2, 2013. Proof that life ain't fair. Two stories.
No. 1. "It wasn't my fault." So I was wrapping up a training ride on the suicycle with John and Dan. We had under a mile to go. We needed to drop down a small hill, around a curve, across a bridge and into a quick right turn. It's a technically complex series of maneuvers for me these days. Braking, shifting, turning, and pedaling all within about five seconds.
As we dropped into the turn downhill, I discovered my brakes had been asked to slow me one too many times, which is to say they were not working.
Let's pause here for a moment. Bike brakes don't often just stop working. In all my years on bikes, this has happened... Uh... Welllll.... Once, including this one.
I had a quick choice to make -- embrace the speed and hope to make the turn without flipping the trike over (which would put my head into the guardrail on the bridge), or I could decrease the severity of my turn, in which case I would probably hit the guardrail (with the trike, not my melon). I elected option two, mostly because I had a feeling that my propensity to pull a turd out of a genie's bottle lately had not been exhausted.
I failed to appreciate the width of the suicycle when I made my selection. Instead of a scrunching sideswipe of the guardrail, the right rear wheel hit the guardrail head-on. I went from 10 or 12 mph to zero in about a quarter of an inch. My right wrist gave an immediate yelp. When we began assessing the damage the thing that stood out was -- HOLD UP, HERE. I'm going to FINISH This STORY ONLY IF YOU PINKY PROMISE NOT TO TELL JEAN. DEAL? GOOD. NOW, WHAT IF YOU ARE JEAN? WELL, IF YOU ARE JEAN, PLEASE CLICK RIGHT HERE. Now that we are all on the same page... The thing that stood out was that when John held out my right arm in such a manner that you would expect to see the top of my hand, what we saw was the palm. John expressed his concern right out loud. I attempted to appear nonplussed. I have to have someone move my hands to and from the bars anyway, so I asked Dan to put my hand back on the grip. To do this, he had to turn the palm down... FFFTH-POP! That is the sound your ulna (the bone that runs from the outside of your wrist to your elbow bone) makes when it pops back into the wristhole. Perfectly, I might add.
But I digress. The point of story no. 1 is I don't need a bike mishap caused by a mechanical failure. Truth told, I actually think I should be exempt.
Story no. 2. "It wasn't my fault". This is not a new story, so I will be quite quick. About two weeks ago I fell on my mouth in the backyard, and I whined about it in this blog in case you missed it.
Well, the stitches are gone, as is most of the blood, but if I were to travel by air, I would have to gate check my lower lip because it is still too big for the overhead storage compartment. When I leave the house in the wheelchair, we put my lip in a trailer. If we had a draft under the front door, we could stop it with my lip. It's big.
One consequence of this is that talking is even more difficult. This, I do not need. Remember the scene in The Godfather when the hitman, Luca Brasi, had rehearsed his expression of gratitude while waiting his turn for an audience with Don Corleone during the wedding (clicka righta here) ? Well, imagine what Luca would have sounded like with half the volume, the ability to sound out only one word at a time, and with a live salmon in his mouth. That is how I sound hauling this lip around.
Proof that life ain't fair.
Days 1019-21, April 26-28,2013. Montreal is off. We have a new plan, one that is arguably a dumber idea, but it will be fun and does not run the very real risk of being lame (like Montreal). And, U.S. Nationals seems like a much more respectable place to retire than a nearly-empty Formula One race track far from home.
U.S. Nationals will be in Madison, Wisconsin, in early July. I don't know much about the courses yet, which is risky, but we have a backup plan. Last summer, we went to World Cup events in Italy and Canada, and we had a ball hanging out with our teammates. Few, if any, of them will be in Montreal, but essentially the entire US Paracycling Team will be in Wisconsin because Nationals also serves as the trials for this year's world championships in Canada at the end of August.
If I can race in July, I will do so. If not, we can ride the bike-friendly roads of rural Wisconsin with John, Dan and Paul on the tandem. See, as if they haven't done enough to support my habit, John and Dan are going to drive to Wisconsin and pull a trailer with the tandem and the suicycle.
The likelihood of being able to race by July is slim, but "race" is a relative term. By "race" I really mean "pedal the bike the length of the course without rolling backward down a hill or bashing into a fixed object or the ground". The truth is I'm losing power in my legs, lots of it. That, along with the challenges that come with having inoperable hands, will make a finish less than a sure thing. Oh, and whatever treats ALS has in store for me over the next couple of months.
Why bother? I mean, why lose a minute of sleep trying to solve yet another engineering problem with the bike? Why look down even one more hill wondering whether I can keep the machine under control to the bottom? Why look up even one more hill wondering whether I can shift into a gear small enough to make it to the top? Why drag family and friends to Wisconsin to probably race against no one? Why endure the humiliation of hearing the PA announcer's voice echoing through the woods "there are still riders on the course", knowing he means me? I know suffering comes from resisting what is, and attempting to race in Wisconsin is totally resisting what is, so why go through it?
Two reasons: first, there is nothing cooler than a USA Cycling national medal, and whatever color they hang around my neck if I finish, I will have earned it more than any athletic award I've ever received. But more importantly, second, this is a marvelous opportunity to give two extended middle fingers to ALS in perhaps the last truly dramatic fashion I will have available.
The day will come when the most rebellious thing I can do is doughnuts in my wheelchair. Until then, I'm going to go ahead and resist what is. Sorry Buddha.
My thinking here is I never want anyone to say "he lost his battle with ALS". No, bro, I'm winning. ALS wanted me to sit my cracker-white ass down a long time ago.. At some point -- after Wisconsin -- I will stop resisting what is, all Buddha-like. And that's the plan.
Days 1015-18, April 22-25, 2013. We need an old priest and a young priest. My wheelchair is possessed and wants to kill me.
The evening started off pleasant enough. Jean was whipping up fajitas on the grill. Jimmy was alternating between juggling soccer balls and getting the patio table set for dinner. Abby was alternating between interpretive dancing to country music and helping with dinner.
Everything was on the table, the weather was perfect and it was time for a leisurely family dinner.
Someone (and I'm not going to say who, because this person feels responsible for what happened next) began helping me get a jacket on. I was standing immediately in front of my wheelchair, and I left the power "on" for the chair when I stood. This was just the break Satan and his complicit chair were hoping for. My jacket hooked the joy story stick and my chair attacked my heels, sending me straight to the concrete, face-first.
On the way down, I had some time to think. Specifically: 1) am I really going to land on my face on the concrete? 2) are my arms going to stay by my sides and do nothing to help out? 3) this one is going to hurt. BAM! My first thought after I made contact was "wow -- that was a terrible sound -- I wonder if my teeth are gone".
Abby had been close by, and had been able to grab my waist, which slowed my fall considerably, and must explain why I didn't break my nose, chin, either cheekbone or any teeth, and why I remained conscious. There was, however, a lot of blood. I bit though my lower lip with my two top front teeth. This is not as glamorous as it sounds.
Jean and John Blueher took me to the E.R. Jean did the driving for a good reason having to do with John, olives and vermouth. We picked the hospital located in the part of town we believed was least likely to have drive-by shootings on a Sunday evening. This strategy paid off, as we didn't even have to sit down in the waiting room. Four stitches was all the damage. I would have predicted more if provided the facts in advance. Abby says I look like a duck. I feel like this guy (click here).
Day 1014 April 21, 2013. Tomorrow is going to be a day off. This afternoon, John, Dan,Paul, Jean and I rode from Manzano High to trailhead for the La Luz trail. Jean and I rode the tandem (65 lbs.), and everyone else rode their road bikes (15 lbs.). Just sayin.
The two mile climb from Tramway Boulevard to the turnaround averages over 10%, and shoots skyward nearly as many vertical feet as we scaled over the course of 70 miles in Mesa two weeks ago.
A pedal stroke should be roughly circular. On the 12% sections, ours were pentagons, squares and even triangles. We came so close to stopping several times that vultures weren't just circling overhead, they were actually putting out utensils and pouring drinks.
Even when complaining (and, yes, she did), Jean was a stud, hammering through the most difficult 40 minutes I've spent on a bike.
The guys were weaving side-to-side, using the whole road so as to avoid tipping over. We were carving the absolute most direct route to the summit, crossing the yellow line if it might save six inches.
When we arrived at the parking lot, we immediately began congratulating ourselves on our mastery of the Universe, and then came the attempted buzz-kill. From beyond the final turn before the parking lot, it began faintly, then grew louder with each repetition. "whee-honk, whee-honk, WHee-honk, WHEE-HONK, WHEE-HONK... " The rider emerged from the curve, staggering with his machine into the parking area. He stopped, pulled his feet out of his pedals,and slumped over his bars. "WHEE-HONK, WHEE-HONK, WHEE-HONK..." As time passed it became clear he would neither vomit nor die,and he began to speak. Unintelligibly at first, then something about 31 minutes, then a full explanation of his ride -- 31 minutes from I-25 to where we were all gathered.
My quick math told me that, not only had we just struggled to keep from sliding backwards down a mountain road, but also Some Guy I had never seen before was at least as fast as I was at my best up that hill. This second kick in the ding-ding was particularly painful because I had allowed myself the luxurious fiction that no one is faster than me on that epic piece of New Mexico roadway. True, my evidentiary support for this notion had been less than rigorous (I avoided this ride when I was with people faster than me), but it was an enjoyable indulgence. Until yesterday.
My sadness over Mr. Whee-honk having burst this bubble went away quickly, though, because then we started downhill. The entire return trip was down, most of it with a significant tailwind. Outbound, our journey had taken almost an hour and a half; the return was barely over 30 minutes.
Tomorrow is a day off.
Day 1013, April 20, 2013. AHS Sports Update. Abby is smoking up the track. Yesterday she placed 2nd (100 hurdles), 4th (300 hurdles) and 3rd (4x400 relay) at a big meet in Albuquerque. On the season, she has the 6th fastest time in the city for the 100 hurdles. The best part is she is having fun and looking stronger every week.
Jimmy had his "official visit" with the UNM Soccer team this week. He spent Thursday afternoon through Saturday with the team and coaches. Stoked. That's what Jimmy is about becoming a Lobo. Woof, woof, woof!
Days 1011 -1012, April 18 -19, 2013. The Walgreen's Incident. Sometimes the extent of my disabilities catches me flat footed. It may be hard to believe, but there are times when I am sitting in my wheelchair, and I fully expect to be able to stand up and walk across the room. Then, when I struggle for two minutes to bridge the two foot gap between my recliner and the wheelchair, I have a puzzled look of frustration on my face.
Tonight was date night, and we stopped at Walgreen's to pick up a new drug. I sat in the Pig (the only nickname there will ever be for any piece of adaptive equipment I ever have -- except possibly "the turd", which is what I'm about to start calling the eye tracking Dynavox computer). From my perch in the front seat of the Pig, I could see well into the store.
Jean was having an insurance adventure at the pharmacy, so I had time to do some anthropological research. The first thing that struck me was the sheer mass of the customers going through the overworked sliding doors. Of 24 people who went in, only four were not obviously overweight. Then my data took a surprising turn. Of the four normal-ish weight people, three came back out with cigarettes. "These people are all going to outlive me", was the first thing that came to mind. On the balance of probabilities, that's exactly right. Serves my smug ass right for all those years I had a massive superiority complex arising from my lunchtime workouts. As it turns out, I might be in the same boat if I had slurped down a plate of enchiladas, a scotch and a nice Cubano every noon.
Expanding my analysis, I turned my attention to a man standing outside the store. Like me, he had a good view inside the store. I couldn't decide which group he fit because his clothes were baggy. He seemed to have very full pockets in his hoodie. Unusually full. His hands never came out of the pockets.
Then a woman in the store caught my eye. She was in the majority group, morphologically speaking. She was smartly dressed in a sweatsuit that had a print that conjured up both leopard and t-rex images. She wielded a teal cell phone, and she seemed to be receiving a call from the Pentagon every 30 seconds or so. She would urgently slam the phone to her head, speak with an importantly furrowed brow for a moment, then return the phone to its holster, hanging precariously from an overburdened belt that must have had cosmetic purpose.
After two or three rounds of conversations with the Joint Chiefs, she turned to a shelf in the cosmetics section of the store and began shoveling merchandise into her shoulder bag. One item at a time at first, then quickly escalating to both hands full.
In my practice, Walgreen's was one of my favorite clients. I am also a good citizen. I was going to stop this crime!
Um... Or so I thought. My first plan was to run her down with my wheelchair. Except for the fact that I was ratchet-strapped into the Pig and the ramp has to be operated by someone from outside. Then I thought Jean might come out before the job was done. No luck. Maybe a Walgreen's employee would come outside to inventory the cases of water placed outside the store to lure potential customers inside. Yes! A female employee came through the sliding door and looked thoughtfully into the parking lot -- right at me! I made eye contact and motioned with my head for her to come to the truck. Yeah, that's going to work on a dark night. She turned a walked back in the store.
Jean's phone was on the dashboard... About a foot out of my reach. Oh, and I can't reach. And even if I could, I can't pick up, dial or be understood on the phone. I could get someone's attention with the horn! But I was strapped to my chair, can't open the latches, and the angle from me to the horn was just too severe to reach with my foot.
Resigned, I sat back and watched the deforestation of the cosmetics department continue. When the shoulder bag was filled, the Kremlin called, the woman answered and walked out the slider.
My frustration turned momentarily to hope, as the man with full hoodie pockets spun on his heel to follow her. My immediate thought: "brilliant! He's a store under cover detective! " Then he got it the passenger side of her sparkling new SUV with custom wheels that caught a reflection of every parking lot light as they rolled away from the store.
So the man in the hoodie had been an accomplice, not The Heat. And maybe what filled his pocket was a gun. And maybe there would have been a murder if the woman had been confronted. So, just maybe my having ALS and being stuck in my wheelchair in the Pig (with no heat and no way to turn it on) was a blessing in disguise and it saved a life tonight. I'm going to go with that one... Another silver lining.
Days 1008-1010, April 15-17, 2013. Perspective. Another way to say this is "some people have it worse than me", which sounds positively heartless and self-centered, so I will stick with "perspective".
Yesterday I went out with Dan and John on the suicycle. I had a hard time with the wind and my neck support device needs to provide more support (that caused me to spend half the ride with my head hanging down, able to see only about three feet in front of the bike). I'm having a very hard time making it two feet from my recliner to my wheelchair. I did not, however, run Boston and find out my family had been blown up watching me waddle in a bit over four hours after the start.
I don't have a seven year-old kid with a brain tumor.
I didn't discover I had breast cancer 16 months ago, fight it hard, and then find out last week that my liver had quit.
I didn't slip and fall in my garage when I was 44, bash my head on a concrete step and die while my wife and kids snoozed on a Saturday morning.
I do whine (mostly to myself) about my situation. I whimper about fairness, suffering, all I am missing or will miss, science, medicine and more. Sometimes I hear myself and it sounds like I will be the only person in the history of Earth to die.
I have spent over 5% of my life knowing I have ALS. Am I satisfied that I have truly lived with ALS? Heck yes I am. But it gets a little more challenging every day. That is why a little perspective reality check is a good thing from time to time.
Days 1004-1007, April 11-14, 2013. Introducing the adaptive equipment of the month. Behold. The sock.
So here is the background. I've been having increasing difficulty rolling over in bed. The problem? There are actually two of them. First, my arms are essentially no help. And if that weren't enough, they get in the way. Try it out -- let your arms go useless, and then try rolling. They really become a liability, am I right? Yes I am.
The second problem wouldn't have been on my list of the top 1000 things to fear about ALS, but check this out. My calluses are all gone. The ones from playing guitar, lifting weights, gripping handle bars, and walking. Yep, walking. My heels are as smooth as a baby's freshly minted, glistening white butt. They are as frictionless as snot mixed with olive oil and smeared on waxed paper. My heels.
Traction is important in the rolling over process. Especially if your arms don't work. And the heels are where the rubber meets the road. Or the sheets. Our sheets are Costco's finest Egyptian Cotton 50,000thread-count varnished bed clothing. They are, like my heels... Frictionless. This is a bad combination when I'm searching for rollover traction. Enter the common sock. Purchase some, put them on, and they provide the necessary purchase -- breaking the vicious frictionless cycle.
Why isn't there a book with this stuff in it?
Day 1003, April 10, 2013. Dynavox Customer Service Sucks.
Dynavox is the manufacturer of my eye tracking computer. Sixteen thousand bucks. While Medicare (you - I don't pay taxes anymore) paid for mine, I still feel like Dynavox should be responsive to me. You know, as if I were the customer.
No axe to grind here. Just me telling how it was with Dynavox. On the off chance you know someone who may need one of these things.
The problem started in October. We have a local representative for the company here, but I learned early on that making an appointment with her is a step that can easily be skipped. When she comes over, she asks what the issue is, and then dials up tech support. So I skipped that step and called tech support.
They had no clue, which meant I had to talk to each of them over the course of several weeks until they concluded I needed to send it back. Now this is a big deal. I can't type at all anymore, and the voice recognition route is just downright entertaining. “Never fear, Mr. Schneebeck, while your computer is in for service, we will provide a loaner”. That is what they told me the first of December. By the end of February, no loaner had become available. I was beginning to get grouchy. I called to pester. They assured me I was in line for a loaner. Seriously? You people make these things! Look behind you, dude!
Then, on a holy day early in March, the most wonderful thing happened. A box was delivered by a nice young man wearing brown, and it (the box) contained my loaner. That meant it was time to pack up mine and ship it to Dynavox, which we did the next day. Bad move. As the UPS truck rumbled away, we plugged in the loaner and discovered it had even more problems than mine.
Hours of tech support later, the loaner was declared a goner. Back in line for a new loaner.
ALSA to the rescue. Kerrie Copelin, ALSA's one woman crew in New Mexico, loaned me a full Dynavox unit that I've been using for everything except email.
Meanwhile, Dynavox tech support was bumbling along. Three weeks after they received my computer, they sent an e-mail asking for clarification about the problem. Then, in the midst of several unresolved exchanges of emails on this topic, I received an e-mail from tech support telling me the unit has been shipped to me.
The way this process has gone so far, I wouldn't be surprised to find a note in the box telling me they gave it their best shot, but right there in the middle of trying to fix it, the one year warranty expired...
Days 998-1002, April 5-9, 2013. El Tour de Mesa!
The riders: Jean, John Blueher, Paul Mohr, ALS Boy.
The Albuquerque crew: Dan Porto (plus Paul and John).
The supporters: Sheila and Ken Refner (post-race picnic feast), Lorrie and Steve Park (post post-race dinner and day after breakfast feasts).
The course: 70 miles, consisting of 21 pancake-flat miles, followed by 40 miles rolling with a total gain of 1800 feet, and then nine miles down and to the finish. The worst thing: the wake-up call at 4 a.M.
The best thing: The lush desert in bloom on the descent to Saguaro Lake.
The most amazing thing: That Paul, John, Jean and Dan would just do everything that had to happen to make it possible.
Some other things: We left home right on our 8 o'clock plan at 10:00. New Mexico looks like it might burst into flames at any moment (and it will, based on the dismal winter precipitation, the near absence of high country snow pack, and the record high March temperatures that have turned what snow was up in the mountains into a very early runoff. Arizona, magically, looks like Chem Lawn has been tending to the whole damned state. Wild flowers blooming, desert grasses waving happily in the breeze, spectacular blossoming cactus and even fat coyotes.
It's like there was a war that the Army of Arizona won,and the peace treaty allowed them to pick what they wanted and leave the crap to the Nuevo Mexicanos.
Oh, yeah, and the Arizona roads have nicer pavement, too.
By the way, I'm not really a gratuitous New Mexico basher. The reverse is true on our eastern border, where all evidence suggests that the Army of Texas was skunked and had to keep Odessa.
We found our hotel, secured libations for everyone who doesn't have a feeding tube, and got the bikes ready. It might have been better to reverse the order of the last two, but it all worked out.
Saturday morning came before Friday night was over and, before we knew it, we were at the starting lineup -- arriving just in time to hear part of the Star Spangled Banner.
Jean did not want to do this ride, even when we called it a "ride", not a "race". Her bike training time had been... Uh, sparse. The times she had been on the tandem this year had been marred by howling winds and a fit problem that has been causing significant pain. To tell the truth, I never really gave her an option. Once Mesa hit the family calendar, it was happening, just as surely as the 6th of April. It's not like we had a lot of choices for tandem captain -- we needed someone hyper-fit with a good sense of humor, under a certain height, who wouldn't mind sleeping with me. Dan might have qualified, but he was off at a family reunion at the NRA's recently acquired State of Texas. Perhaps sensing our lack of alternatives, Jean declared on Friday morning that she would turn no pedal in anger; but instead would ride every stroke "with love".
And she delivered on that promise. The flat part of the course buzzed by in 1:09 for 21 miles. John and Paul rode to either side of us most of the time. Then we, and apparently everyone in front of us, stopped at a rest stop smartly equipped with three port-a-potties. 1400 riders and 3 holes. So we had a leisurely 17 minute rest before heading up the first of many hills.
The tandem climbs as well as I juggle. So the hills slowed our pace considerably, but we always remained within the window we had guesstimated before the ride. As the morning wore we found ourselves in the stunningly beautiful scenery of the desert in full spring bloom. It was easiest for me to enjoy the vistas from the back seat because the best lighting tended to come when we were descending, and everyone else had their hands full keeping us on the road.
The final climb that took us to the ten-to-go mark, was a long grind. Our "speed" hovered just under 6 mph, and we passed only one rider who wasn't walking. On this stretch, everyone had plenty of time to admire the flora, although Paul and John had to divert substantial attention to keeping their bikes upright.
We rolled across the finish line at five hours, fifteen minutes after the start. It was a beautiful ride at a very respectable moving average speed of almost 15 mph. Jean was completely up to the task in every way, and very much in the mood to celebrate after.
We spent the rest of the weekend replacing (plus some)the calories burned on Saturday.
The drive home even helped in this way, as we stopped at Sparky's for the greatest green chile cheeseburgers on the planet, and, uncharacteristically for Sparky's, no flies.
Days 995-997, April 2-4, 2013. So we are off to the race in Mesa tomorrow. And we have decided to give the suicycle a go in Montreal at the end of the month.
I feel like this takes us well beyond what a friend should be able to ask friends to do in good conscience.
We will have a gang of 6 in Mesa, and 7 in Montreal. Both trips are all day journeys for everyone involved, and both trips will require a ridiculous amount of pre-departure planning, along with astonishing schlepping demands.
For instance, this week Dan and John have spent two afternoons getting the tandem in race shape and making adjustments that will help us stay comfy for 70 miles. Meanwhile, Paul put his ingenuity to work and designed a device that he and my mom built to control my pesky reflexes.
The problem surfaces when my foot extends down just so. At that point, my calf begins contracting four or five times a second. This is highly annoying. Paul's new device prevents my foot from extending to that point, but allows me free movement through the pedal stroke. It has been tested on the tandem and I will use it Saturday. I'm hopeful it will be as effective on the suicycle.
The Montreal decision moment was a beautiful thing. Remember that moment in "My Cousin Vinny" when Vinny's nephew realized he was being accused of murder and he said, incredulously, "I shot the clerk?!" Then the prosecution used the words as a confession. It was a moment like that when Jean's words, (in fairness, uttered rhetorically), could be treated as an offer. Like the jerk I am not very deep inside, I said "well, if that's what you really want, honey..."
Day 994, April 1, 2013. Sports Update. Jimmy has verbally committed to play soccer for the University of New Mexico. This is a huge deal. The Lobos are a perennial powerhouse, routinely in the NCAA top 20, and often higher. They played for the national title in 2004, and this past season had a disappointing early exit from the NCAA tournament when many futbol experts expected a deep run. Earning a spot in the starting lineup will be the greatest athletic challenge he will ever shoulder. You remember what it was like when you walked on to play quarterback at Bama, right? The only difference here is that UNM wants Jimmy on the squad. Otherwise, your situation back in the day was about the same.
Abby is off to the races in her sophomore track season. In only two meets and without much specific training, she has matched her best times from last season. I am coaching one day per week. It's something like having a duck sing the lead at the opera, but the girls gather close and listen carefully. And then they say "huh?"
Days 987-993, March 25 -31, 2013. Montreal is still in limbo. We had another go at it with the homicidal tricycle this week, and it went fairly well. No brushing of skin on asphalt, among several bullets dodged. I rode faster than the week before. The reflex problem was a bit more controlled. So now we are trying to decide whether to pull the trigger and buy tickets. No pressure. If I ride too slow to be credible, I let my own self down. If I crash, the crew will be (justifiably) thinking they told me so, but it would be bad form to just leave me there on the pavement and go have a Molson, so, practically speaking, they will have to clean up the mess. Thousands of otherwise useful dollars in airfare and hotels. No pressure.
I keep trying to bait someone else into making the decision. They ain't biting that worm. I'm going to have to pick... Tomorrow. Well not later than Tuesday.
Meanwhile, there is something we are going to do. El Tour de Mesa, a 70 mile race-like thing in Arizona next Saturday. Looks like the team will be Paul Mohr, John Blueher, the captain of my tandem, Jean, and me. Maybe Tim Holm, but there is an issue between him and the race organization people that might make that a bad idea unless Arizona closes that fruits and vegetables inspection point at the New Mexico border. By Friday morning.
It's a nice course -- very flat. Until the hills, anyway. 700-800 bikes, the vast majority of which will finish well before us. There will be some changes from our last road show in November. Though the bikes and the adaptive equipment will be the same, my fuel will go in through my feeding tube, which sounds sort of creepy to me. I'll be like a jet refueling mid-air. Only not as fast. The reflexes are bothersome on the tandem as on the suicycle, and we are trying to figure out how to mechanically freeze my ankles. That's actually not as easy as it sounds.
Days 980-986, March 19-24, 2013. So the UCI's para-cycling race in Montreal is April 28. That's coming right up. We are still trying to figure out whether it's reasonable for me to throw down... Well, that's probably a bit dramatic -- how about "whether it's reasonable to fill out the entry form?" I don't know whether I was ever one to throw down, but, if I was, I'm certainly not anymore.
So we need some fair assurance that I will be able to make the suicycle go, stop, turn and change gears. I have issues with each of these components except turning.
Go. I have the power in my legs, but the reflex activity in my ankles is a massive distraction -- one of such magnitude that it interferes with bike handling. We are experimenting with massage, central nervous system depressants and a tranquilizer dart gun.
Stop. This, I believe, is manageable for Montreal for the convenient reason that the course is flat enough that brakes are a nice touch but technically unnecessary.
Changing gears. My racing trike has two sets of ten gears. There are two shifters -- one that shifts between the fast set and the slow set, and one that shifts between the ten gears in each set. I can operate the latter, but not the former. Again, thanks to the flat course contour in Montreal, this is a problem we can ignore for that event (note: I do have a plan for a schnoz-mounted solution to this problem).
So, today we gave it another go. The reflex problem is really the king of the turds in the Montreal punch bowl, and it is significantly improved from last week but by no means can it be considered resolved or under control. Speed, though, was definitely up. Last time, my speed typically hovered around 11 mph, with a top reading of 13. Today those numbers were 13 and 16.
One more try? The concensus is "yes". Well that's if a concensus is made up of the views of Paul Mohr, John Blueher, Dan Porto and me. And if you don't really factor in the views of Jean or any of my doctors.
Days 977-979, March 16-18, 2013. Have you ever really wanted to know where you stand in the big picture, and then you found out and you really wished you hadn't wondered?
When I was in college, my sort-of girlfriend had just dumped me (or notified me that she was not, and would not become my girlfriend). I made the mistake of going in for an exit interview. Worse yet, it was on her turf -- a remote family getaway with her mother and her best friend. If the invitation was hers, she must have hated me very much. If I lobbied for the invitation, I was more pathetic than I recall.
As the discussion opened, I had no delusional thoughts that she would tell me how foolish she had been and fall into my arms. But I did hope she would return some of my self esteem. I lobbed a softball her way. I don't recall the words, but the gist was to offer her the opportunity to say the problem wasn't me; she just wasn't in the right space for a relationship. She could easily have lifted that ball out of the park by claiming it was just a matter of unfortunate circumstance. Instead of a gently arcing fly ball, she delivered a scorching hot line drive right back to my teeth -- a series of complaints, practically an itemized list of reasons neither she, nor any rational female would want to associate with me.
I truly wished I had not asked.
Last Friday, I listened to a webinar about a drug being tested for ALS that is believed to be capable of delivering more muscular bang for the nerve impulse buck. If so, it will make people stronger at every stage of the disease. That would be handy.
Researchers went through the theory, what they know so far from testing on animals and from early human trials. Then they went to the timetable, and that is when we found out what we wish we didn't know about where we stand in the big picture.
The timing could be all about the plight of patients facing one of the few diseases for which there is no treatment. They could have talked about balancing this pressing need with the necessary scientific rigor to ensure validity of the results. The timetable, however, was designed to enable the scientists to present the results at a December conference in Las Vegas.
I wish I hadn't asked. On the other hand, though, thank God for conferences in Vegas, right?
Days 975-976, March 14-15, 2013. So let's talk about the bike. With a ride on the suicycle highlighting today's festivities, I woke up in a state of sheer terror this morning.
it reminded me of that time when I went backpacking all by myself and made my dog sleep outside my tent for my personal security and to guard the food I hung foolishly from a low tree branch, and I awoke to a sound that could only be a bear licking dog guts off his claws, and when I finally mustered the courage to open the tent, I found my beloved golden retriever Livingston snoring while a most grateful raccoon was just polishing off the last pop tart.
I wanted to sleep until departure time, and I almost succeeded. John, Paul and Dan picked me up and we headed for the trail by the Rio Grande.
The start of the ride was troubling. I was shaking so violently I could not hit the shifter button with my hand. The shaking is a function of ALS -- brisk reflexes cause the rapid and rhythmic contraction of my calves. The effect is similar to riding over railroad tracks... For ever.
Over the course of the ride, things improved, but not dramatically. Shifting was difficult and inefficient, though braking and turning were fine. The reflexes never resolved, but they eased up a bit. The most significant problem was certainly the reflex thing. And it must improve or racing would be silly -- my top speed today was a smoking 13 mph.
With ALS, improved performance is not a common thing, so what do I have in mind? Well, last February Jean and I went to San Diego, where we met our new friend Steve Peace, who introduced me to the suicycle. We took a short, easy ride that was nothing short of terrifying to me. You can go back and read the story from the first week of February 2012, but here's the summary: it took a massive stroke of luck to keep me and the trike from plunging into Mission Bay. Of the numerous problems I encountered that day, wildly hyperactive reflexes was one. Same situation arose when I got on my trike for the first time. The common thread in those rides was terror, which most assuredly was a factor today. And, get this, the reflex problem is more pronounced when I'm nervous. So, I have worked through this in the past. Maybe one more time? We'll give it another go on Tuesday.
Days 972 -974, March 11-13, 2013. Life sucks; get a helmet. This is what my month of practicing meditation has taught me. Doesn't sound very Buddhist, now, does it? Here's the analysis.
Life consists of a series of magic and tragic events. Some people are spared most of the tragic until relatively late in the game. I put myself in this category. I'm 52 years old, and I've been to barely a dozen funerals; haven't lost a parent or a dear friend; have healthy and happy kids and a perfect marriage to someone who is the life of any room she walks into. By the time most people are truly confronted with their own mortality, they have experienced so much grief and pain, they can call upon the past to help steer the ship. For some, this is an inevitable part of having lived a long life; and for some, it's a function of wading through deep doo-doo during a short and difficult journey.
Part of the price of admission is we all have to endure a certain amount of overripened crap. Buddhists, meditation gurus, shamans and others try to help us focus on now -- independent of how now compares to yesterday, or what now may mean about tomorrow. If you can genuinely learn that trick, you have accepted that pieces of life suck, and you have strapped on a very protective helmet.
Tomorrow I'm riding the suicycle-- no need to lament what or how I used to ride, and no point in fretting over his much longer I would be able to get lashed to the beast. But I do have a solid reason to wear a helmet. Yes, I do.
Days 968-971, March 7-10, 2013. There we were, minding our own business, rolling through an empty intersection, and when Dan and I hit the gas on the tandem, a nasty crunching sound was followed by an equally nasty growling sound. We had torn through a weld and into one of the tandem’s structural tubes. Even though modifications we have made to the tandem have nearly doubled the amount of power that can be applied to the machine, this was – obviously enough – a warranty issue. That’s the good news. The bad news about a warranty issue is that it typically takes weeks to resolve one. Then there is also the “how do we get home?” issue.
Dan, John and Paul cut through the latter problem with a combination of zip ties, duct tape and power bar wrappers. There was an amusing moment (from my comfortable seat on the back of the tandem) when Paul was on the phone with his office trying to track down some tools, Dan was on the phone with a welding shop trying to assess whether we should take the tandem there for an attempt at an immediate repair, and John was on the phone with the bike shop, Two Wheel Drive, discussing the warranty. All this was happening on the narrow shoulder of a heavily travelled road alongside a gravel pit, a concrete plant, and a road construction company.
After we limped home, the Brain Trust decided we should take the tandem to Two Wheel Drive. Dan and John loaded the tandem and a bottle of rum into Dan’s truck and drove away.
Two hours later, they reappeared, slightly rum-soaked, but justifiably proud to show us the fully-repaired tandem. In a highly unusual warranty claim process, the good folks at Two Wheel Drive disassembled a bike they had on the floor and replaced the broken tube on our tandem. Thus, what we feared would be weeks out of service turned into a few hours. For this kindness, we did our best to say thank you in the language of bike people.
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Day 967, March 6, 2013. The Return of the Suicycle. Jean asked for a promise: "you won't ride if you feel unstable or if you think it's a bad idea." I responded with a counter offer: "I won't ride if it feels unstable or if I think it's a worse idea than it was five weeks ago". Jean gave a dismissive wave of her hand under a slightly disgusted frown, and returned to the crossword puzzle.
Paul, John and I made our way to Balloon Fiesta Park, mounted up, and took a few cautious circuits around the launch site. One of the three of us accurately described me as "nervous as a whore in church" before the ride, but, as things progressed, I became more comfy, and I was even able to determine that the ride was not a worse idea than it would have been five weeks ago. It clearly was a bad idea, but that was cast in stone when I bought the suicycle a year ago.
I think what this means is I'm going to race the thing at least once this season -- most likely the UCI event in Montreal. What, if anything, comes after that will be subject to negotiation, assuming, of course, that I keep the rubber side down between now and Montreal's Defi Sportif Alter Go (French for "sporting event utilizing modified equipment that is far more dangerous than normal stuff, such as the suicycle").
Day 966, March 5, 2013. When I said I'd be off the bike today resting, I was mistaken. Jean is heading out of town for a 36 hour assault on her liver and those of four of her sisters, so she was in a bribing mood, and bought my right to whine by offering a tandem ride on her last day in town.
We did a 16 mile sprint with our buddy John Blueher, and I took a vicious nap after.
AHS Sports Update. Jimmy is going to be playing college soccer. The question is: where? Your first clue as to schools in the running:
perhaps southeast or northwest,
but I've got my money
on one of '12's 16 best.
Day 965, March 4, 2013. So the post I put up yesterday represented the longest gap in postings since I opened the blogs over two years ago. Why for did that happen?
Here's the primary reason. Most days since the accident I have felt only like sleeping, riding or doing one other thing that relates (linguistically speaking) to the other two. I have not had any interest in sitting at the computer to take care of any of the things it can help me accomplish.
Bills have gone delinquent, emails unanswered, and I have even lost track of college basketball and the NFL combine.
I have descended into a swamp of recurrent anxiety. However, it appears I have only been visiting. In "Goldeneye", James Bond drives a motorcycle off the end of a runway that ends at the top of a cliff. He is in pursuit of an un-manned airplane that preceded him over the precipice. He abandons the cycle, goes into an aerodynamic tuck (which, as you would expect, makes him faster than an airplane), he enters the plane, seizes the control stick, and begins pulling up. His face is crimson, veins bulging from his temples and neck, eyeballs protruding and teeth clenched. At what seems like the last possible moment, the stick succumbs to his efforts and the plane begins to defy gravity.
Probably a bit dramatic, but, like 007, I feel myself regaining control. Keys to the recovery have included: 1) riding; 2) meditation; 3) riding; 4) that thing that is linguistically related to sleeping and riding; 5) riding; and 6) listening to a psychiatrist say "under the circumstances, I'd be more worried about you if you told me you weren't experiencing anxiety". Oh, and 7) Friday Night at the Movies, a budding tradition at our house that you want no part of if you're hoping to watch the movie (or if your cholesterol is high, because Tim Holm stops at KFC on his way).
Today is the fourth consecutive day I have been on the tandem. All of the rides have been fairly high levels of effort. We have put in about 70 miles. It has been the toughest stretch of days I've had in well over a year. And I want to go again tomorrow.
I'm not going to -- tomorrow I'm going to sleep, quite possibly all day. Wednesday, however, I'm going to get back on the suicycle with the help of John Blueher and Paul Mohr. I'm pretty sure I hope it goes well. I'm certain I hope to keep my melon off the deck.
Days 949-964, February 16-March 3, 2013. "Go the &#!@ to Sleep". A children’s book by Adam Mansbach, has a special place in our bedroom in the days since the suicycle crash of 1/31.
I don't mean to suggest the book is in our bedroom, but I do hear Jean recite the money line from the book at least one time each night, and sometimes many more.
Dig, if you will, a picture. Your husband lies next to you in your bed. He's 6'1", 160 and 52 years old. He can't lift either arm from his side to his nose. When he sets about the task of rolling to his side from his back, the opposite arm gets left behind like it's nailed to the mattress. Once he makes the roll, he will find himself on top of the sheets that had been hanging over his back. These sheets will bind him up like a straitjacket. Also, when he rolls, his pillows will slip from their correct location and result in a very real breathing hazard. He will initiate at least three significant repositioning sequences every night. For the rest of his life. Well, until he no longer has the strength to initiate a roll, after which you will have to roll him. Every piece of the step-by-step needed to accomplish the above falls in your lap. Every night. Even if you've had an objectively rotten day.
This is what Jean faces every night. And she is not, by nature, at her best during the middle of the night. When our children were nursing, a 3 AM squawk from a precious little one often was answered by a low level growl from Jean followed by the rustling sound of a pillow being pulled over her head. Our kids should worship mama for enduring labor and delivery, but I carried the water on answering the call of the midnight munchies.
So, when I roust sleeping beauty from blissfully slumbering, I know I'm grabbing a tiger by the tail. Jean's unfiltered reaction to "honey, please move my left hand from my ear to my hip" would be to scratch out my eyes and shove them down my throat, so I am grateful beyond measure that what's been happening is she quietly complies, then asks whether I need anything else, and then -- get this -- kisses me before she settles back into the sheets. Three times -- minimum -- every night.
When I'm feeling sorry for myself (and I'm doing that a lot more these days) I try to remember how lucky I am to be surrounded by so much love.
Last week, we were waiting outside UNMH's neurology clinic waiting for our turn at the ALS Clinic. The Clinic concept is a turn of compassion and genius. Specialists in areas of concern to ALS patients gather at the Clinic, and they rotate through the rooms where ALS patients are waiting. This is probably very effective in big cities where there are lots of ALS patients -- enough, perhaps, that a respiratory, physical, occupational or speech therapist might see ALS patients exclusively or at least predominately. That is most definitely not the case in New Mexico.
UNM Hospital estimates that there are about 80 people in the State living with ALS, about 50 of whom receive care at UNMH. If all of us went in every month, that wouldn't be full-time work for anyone. Of course, we don't go in every month on account of because of the fact that there is no treatment for ALS, so the only apparent purpose for scheduling a regular visit is so they know how long we live.
Where the therapists have lots of ALS knowledge, they are probably very helpful. Here, they are just very compassionate, friendly and nice.
I keep threatening to go to a big neuro center in Dallas for a Clinic visit. That would kill two birds with one airplane ticket. First, I could find out what the people with real experience know, and, second, I could stop by Cowboys Stadium to pee on the logo.
So there we were, waiting for our turn. A gentleman about my age said "excuse me, do you mind if I ask a personal question? Do you have ALS?" My instinctive response ("mind your business, you racist! ") was so obviously inappropriate, I resorted to the inconvenient truth ("yes").
The man walked with a cane, and his speech had the quality of mine during a time we now refer to wistfully as the "good old days". As we talked, we learned he was diagnosed a bit more than a year ago, and that he lives alone in Santa Fe. With respect to his living arrangements, he said, in a matter-of-fact tone "that will have to change".
What, exactly, does that mean? When I'm feeling sorry for myself, I need to remember just how good I've got it. The man we met at Clinic was on his own last night and this morning. Meanwhile, Hilma Chynoweth brought us a delicious enchilada dinner, while her husband, Jim, brother-in-law, Phil, and nephew, Jeff, played an acoustic concert in our living room. This morning, Jean helped me out of bed, got me dressed, fed, and on the stationary bike for a workout.
If, from time-to-time, Jean needs to tell me to "go the %@#$ to sleep", I think that's probably just fine.
If you have someone who needs to go the @!#% to sleep, click here.
Days 945-948, February 12-15, 2013. Here's a bike crash silver lining: I'm getting a little bit better every day, instead of the other thing. That is a big change from the usual order of things with ALS. I'm not sure I would go so far as to say a good crash every few weeks would be good for the soul, but, you know, I'm just saying.
A lot of riding this week. Monday, Wednesday, Friday and Saturday. All of it was on the tandem with some combination of Paul, John, Dan and Jean. The weather varied from k-rap to beautiful, unseasonably warm/exhibit "A" to climate change paper.
My legs feel good -- strong and durable. But my balance is all dopey. I'm falling back on the "use it or lose it" theory. Three days in the hospital during which I didn't walk a step took a toll. I'm walking slowly and tentatively with the walker, and I feel about as stable as North Korea.
AHS sports update. Abby's swim team season ended today as she set a personal best time for 50m, which put her right in the middle of the pack in her varsity district meet. We think this is sort of a big deal, as she spent the early season workouts essentially learning to swim, and made her way to varsity by working hard all season.
On the boy's side, Jimmy decided not to play baseball for the first time since he was four years old. This makes us sad, but not because he's been spending the extra time on X-Box. He is actually quite focused on the college soccer recruiting game. There are many complex scenarios, but the highest likelihood is that he will wind up playing collegiate soccer at a Division I or a Division III school. He is away in Phoenix this weekend playing in a showcase tournament designed to put players together with college programs. The star of the weekend's coaches in attendance from our boy's point of view is the head coach of our own UNM Lobos.
Last issue in our sports segment is track. Abby starts this coming week and there is an interesting question about whether I will be coaching this year. I'm more mobile than I was a year ago on account of because of my wheelchair. On the other hand, I have lost lots of ground in the "say whaaat?" category (meaning that people often say "what?" after I speak). We'll see.
Days 943-944, February 10-11, 2013. Have you ever bottomed out a vehicle on a rough road? Unless you performed a particularly enthusiastic bottoming out, your vehicle rebounded rather than forever scraping its underbelly along every road surface it encountered for the remainder of its serviceable life. For those blessed with reasonable resilience, the same is true of humans.
We might bottom out from time to time, but we typically recover to continue the relative smooth sailing of our day-to-day existence.
Good damned thing.
Today, with no specific triggering event, I bottomed out. It came to me while I was kicked back in my recliner watching re-runs of Breaking Bad. I broke into a cold sweat having nothing to do with the severed human head rigged by booby trapping to an exploding tortoise on the TV screen. My heart rate increased (also unrelated to the turtle bomb). I felt like a large man was seated on my trachea to the point I could see the air leaving the entire room.
I was convinced I was dying -- not just certainly and sooner than my life's plan, but imminently and with shocking speed. The wave of panic ebbed and flowed for hours until Jean and I settled in for a nap. I fully understand that nobody has ever gotten out of ALS alive, and the source of my distress wasn't a temporary lifting of the veil of denial. It was far more pragmatic. Things that came to mind were items from my to-do list. The files are not in order. I haven't written a list explaining what bills get paid automatically and which must be individually paid. Tell someone where the bones and the treasure map are buried. Then it went from there to things I haven't said to Jean, our kids, my parents, family, friends... At some point I began to realize I actually do have much more left to work on than my knowledge of Saul Goodman's many ethical transgressions committed in the course of providing legal advice to Walter White and Jesse Pinkman.
So, by the way, do you.
Maybe my experience bottoming out can do more than just scare the piss out of me. Have a look at your to-do list. Is the important stuff even on it?
Days 941-942, February 8-9, 2013. Back on the bike. The trike anyway. Well, the tandem anyway. This afternoon John Blueher and Dan Porto came over after their actual bike ride and got me into the tandem. I actually felt more comfortable than I have all day. My ribs are not an issue, and my right shoulder blade is supported adequately by the slings already in place on the tandem. We took a couple of laps around the park to see whether things work properly (yes) and the plan is to ride tomorrow. While we were in the garage, I had my first look at the suicycle since the accident. There were no claps of cranial thunder accompanied by flashbacks to the crash. Looking at the trike you would never know it was involved in a brain scrambling episode. It looks just perfectly happy and ready to go back out. It frankly looks a little pissed off at me for having ignored it for the last eight days. I tried to avoid eye contact but it's pretty irresistible.
I remain fascinated by the notion that the accident erased my memories from before the event. I understand that I might not remember the impact, but John and Paul have described some specific things that happened leading up to the crash that are nowhere on my hard drive.
I feel like I should be able to get back on the suicycle within a few days. There is a minor matter of negotiating with my family. But I'm a persuasive guy, so I feel good about the likelihood of success. The key arrow in my quiver is (uh oh, Jean was reading over my shoulder). As I was saying... My wife is the most beautiful woman in the world. The love of my life. My best friend. Okay, she went to open some wine and she's having a hard time picking between a cab and a pinot, so she's focused.
The winning argument, I think, will be that the accident was not my fault. Now, that could be spun against me ("you can't control when someone might wipe you out and the next one could be The Big One"), but I feel like I have a powerful retort for that ("pretty please..?") Uh oh, Jean got her wine.
Here's how I assess the situation. I wasn't very good at riding the machine before the crash, so it shouldn't take long to get back to where I was, and the email from USA Paralympics that showed up while I was all wacked out on banned substances explains the qualification criteria for the world events this summer, and I'm just stupid enough to think I might be able to be in the hunt for a spot on the US Team for the World Championships. I'd rather be suffering from delusions like this than trying to come up with my daily plan for being moved around enough to avoid getting pressure sores.
Days 933-940, January 31-February 7, 2013. "Boom, boom! OUT GO THE LIGHTS!" So Thursday afternoon was a beautiful day for a ride. John Blueher, Paul Mohr and I decided to take the suicycle to the bike path for a couple of 10km sprints.
The last thing that I remember (this is not take a good way to start a sentence that is not about falling asleep, and this sentence is not about falling asleep). The last thing I remember, we were southbound with about 2-1/2 miles remaining. I don't remember the crash. I don't remember something happening that caused the crash. I just remember riding along all Lance Armstrong-like (except slower and with my own blood and my own supply of testosterone), and then I remember being in the Emergency Room. Nothing in between. No white light. No dreams. No one asking "how many fingers am I holding up? " or "is the Dow above or below 12,000? ".
Riding, and then the ER.
What we have been able to piece together is that we passed two kids who were trail-side talking. One was wearing white, the other was wearing the uniform of a local youth race team, Active Knowledge. The one who was in white looked at the suicycle and yelled "that's [really, really] awesome". Within a couple of minutes, the pair caught us, passing together in the left lane (there is not enough room on the path for me in one lane and two normal bikes passing me shoulder-to-shoulder in the left lane). One of the kids clipped the left rear wheel of suicycle with his right pedal, and all three of us went down. I went over my bars and landed on my face, right shoulder and and both knees, then flipped over to scrub my neck and ribs on the asphalt. In the end, the boys walked away. I took a ride to the trauma center at UNM Hospital.
There was damage: concussion; internal bleeding in the brain; bruised pancreas; five broken ribs; broken scapula, cuts and abrasions.
My 48 hours in the hospital are a morphine and oxycodone-inducuced fog. Same for most of the time after, but I do clearly recall the sound and sensation of a rib re-breaking on Tuesday night.
The good news... No damage to the suicycle.
Days 931-932, January 28-29, 2013. Jean says the blog hasn't been funny in "over a month". She must have overlooked what I said about Wayne LaPierre and the story about the beer's volcanic reaction with my feeding tube (among others).
However, we here at Oso High Endurance Sports are responsive to reader feedback (even when misguided or motivated by ire after catching me and my mom trying to figure out how to get me on a treadmill at the gym after having specifically refused to do so herself -- hypothetically speaking).
So... Here's an outtake from Lance Armstrong's interview with The Big O:
"Some of the accusations really make my blood boil... [chuckling] Good thing I have plenty more in the fridge".
Or... Dr. Ferrari's assessment of the confessions to Oprah: "That took a lot of ball".
How's that, haters?
Days 925-930, January 22-27, 2013. The one that got away. Ever notice how you remember the one that got away better/more clearly than the one you got? The fish, the girlfriend, the 90 that could have been an 89 if that putt had only fallen, the real estate deal that went south, the pass you dropped... Whatever arena -- the chance you missed.
Maybe I'm unusual that way, but I remember these things and more. I can describe in far more detail my fourth place finish in the 400m hurdles at the World Masters' Games (the one where I misjudged the tenth hurdle and wound up taking 19 steps between the ninth and tenth hurdles instead of 17 as I intended) than I can tell you about my first place finish in the World Masters' Games where every hurdle must have been just about right.
Same for my law practice. I remember the objections that were overruled but not the ones that were sustained; I remember the motions I lost with painful clarity, but little of those we won; trials; appeals; arbitrations. But the ones that really stick under my saddle are those that, in a fair and just world (where I was reasonably smart and quick on my feet), I should have won. The ones where the only explanation for the outcome is that something went terribly wrong and I should have been able to stop it.
In 26 years of practice, the big one was Title IX, the 1972 federal legislation that told schools they could not discriminate based on gender. This is the law that got girls and women, in droves, onto the courts, ball fields and tracks of our nation's schools. It was too long coming, well-conceived and beautifully written. In 1979, however, something happened that has allowed Title IX to become a favorite tool for man-haters and a favorite scapegoat for university beancounters. The language of the law is clear and simple:
No person in the United States shall, on the basis of sex, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any education program or activity receiving federal financial assistance.
The practical problem -- if you own a university, how do you know whether you are in compliance?
In '79, The Department of Health, Education and Welfare (now the Department of Education) announced a three-part test for determining compliance:
1. Providing athletic participation opportunities that are substantially proportionate to the student enrollment. This prong of the test is satisfied when participation opportunities for men and women are "substantially proportionate" to their respective undergraduate enrollment.
2. Demonstrating a continual expansion of athletic opportunities for the underrepresented sex. This prong of the test is satisfied when an institution has a history and continuing practice of program expansion that is responsive to the developing interests and abilities of the underrepresented sex (typically female).
3. Accommodating the interest and ability of underrepresented sex. This prong of the test is satisfied when an institution is meeting the interests and abilities of its female students even where there are disproportionately fewer females than males participating in sports.
So, if you owned a university, you could show how things were getting better for female athletes (whatever that means), you could construct an interest survey, or you could do a little math. And, assuming you had people on hand who could do 7th grade math, there would be no argument about whether you were in line with the law.
Guess what most schools chose as their path to compliance? Yep, prong 1 -- the "proportionality " test. Here's how it works. Let's say your university has 10,000 students, 55% of whom are female, and 45% of whom are male (this is about the national average). You count up the number of athletes you have in your various sports. If at least 55% of the athletes are female, you are golden.
As a result of Title IX, the number of student-athletes in our colleges and universities hit an all-time high in the late 1970s. The three-part test, however, began thirty years of declining participation in athletics early in the 1980s. The slide continues.
Why did this happen? Let's go back to our hypothetical. Assuming only 50% of the athletes turned out to be women, what do you do to get that number up to 55%? Do you add a women's ski team? No -- that's expensive. You start cutting men's programs. You start with wrestling because there is no women's equivalent. Not enough? Keep women's track but get rid of the men. Same with gymnastics, swimming and soccer. Do the numbers line up? Good. Send your report in to DOE, slap yourself on the back and move on to something else.
The next Fall you run the numbers again and you're back to 50% again. What the...?
When you dig into it, you find out that women are dropping out of track, swimming and gymnastics. Why? Because training, travelling and competing alongside the men was good for the team's performance, and, quite frankly, more fun. Scratch men's golf. Pour a glass of sixteen year-old single malt scotch and call it a day.
A moment for reflection. How has all this increased opportunity for women? There are no new sports for women, and actually fewer women participating. So let's seeee... Well that leaves more money in the athletic budget to spread around, right? More likely the savings wind up on the football field. That or the regents take credit for coming into compliance with Title IX AND saving almost a million bucks. No need to go through the details of how they saved the money in the press release.
The legal problem with the three-part test is that the test is a "rule". Government agencies are allowed to make rules to help enforce the laws they are required to implement. All they have to do is publish the proposed rule in the Federal Register, allow public comment and get congressional and presidential approval. You know, a lot like you did when you did that thing last week.
Here's the rub -- DOE never did this for the three-part test. Really.
So all you have to do is tell a judge about it right? Well, not exactly. When a university takes an action like killing a sport, a court will not even address questions about the legal basis for the action if there is a permissible factual basis underlying the decision. Something like cost. In virtually every situation where a university cut sports in the name of Title IX, the decision also included some reliance on the need to reduce athletic department expenditures. This financial issue was the skunk on the perfume counter. Constitutional and other arguments about the three-part test (the perfume) might have been lovely, but the courts never noticed because a university has vast discretion in how it spends its money. The finance skunk overwhelmed the niceties of the arguments about how the three-part test was a pile of crap.
Until James Madison got into the act. JMU, my beloved alma mater, announced the elimination of its men's track, gymnastics, swimming and wrestling programs in 2007. I waded into the fray with a couple of letters to my friend Linwood Rose, the university's president. Somehow I wound up linking up with a brilliant D.C. lawyer named Larry Joseph, who had been beating his head against the three-part test for over a decade. We teamed with my law school classmate Tom Miller in Roanoke, and we filed suit against the DOE and JMU on behalf of a group of students.
Why did we have a better shot than those who had gone before us? JMU's board of visitors gave us a gift. When they announced their decision, not only did the board not blame it on money, the board affirmatively stated that they had plenty of money and that Title IX was the one and only reason for eliminating the men's programs. The record was perfect for focusing the court on the three-part test. The facts in the case were so good for us that some of the more aggressive Title IX advocacy groups were actually suggesting that JMU was intentionally setting up the three-part test to get knocked down by our lawsuit.
When we went to court in Roanoke to ask for an order requiring JMU to rescind the cuts, JMU presented no witnesses and didn't even bother to cross-examine ours. We had a female pole vaulter talk about how the loss of the men's program would damage the women's team. Larry delivered a brilliant argument explaining the importance of the fact that DOE had never gone through the rulemaking process. I gave a tear-jerking constitutional equal protection talk while the defense attorneys stared at the ceiling. It couldn't have gone better. And we lost. We appealed to the Fourth Circuit in Richmond. We lost and were sent back to Roanoke, where we lost again. Back to the Fourth Circuit. Turns out they meant it the first time. Then we asked the Supreme Court to hear us. No. Game over. So now, if you go to JMU and you're good enough, you can run, swim and gymnasticize... As long as you are not a dude. And there are fewer women participating in JMU'S athletic programs than when I graduated in '82.
What happened here? I'm not asking why we lost, I'm puzzling over why the one that got away stings so much more than the one we got provides comfort.
I think it comes down to what is fair and just. I don't fret over losses that I should have lost. Those were fair and just results. If you are one of my kids reading this, what I hope you will take from this is: fight for what is fair and just -- it will save valuable space on your cerebral hard drive if you go ahead and win when you should. And, in every aspect of life, be very afraid of a sure thing. Oh, and if you become a lawyer and someone ever says to you "properly argued, you can't lose," become immediately sick and get someone to fill in for you.
Days 921-924, January 18-21, 2013. Back to the mountains. Another Angel Fire weekend with our family, Paul Mohr, John, Kim and Clayton Blueher. I got out twice -- Saturday and Monday. There was some falling, yes there was. But I felt like there was more stability generally. Except that time when we were getting off the lift and I went hard right between the electric panel and the trash cans. Well, and that time when I scrubbed my face on the snow in such a manner that I had to spit out chunks of ice crystals once someone turned me over. Except those times I was far more stable.
Apres ski on Saturday Paul, John and I learned an important lesson about my feeding tube. I have previously lamented that beer no longer tastes good. Every now and then, I have a sip or two that doesn't taste like ass, but I rarely get past the bottle's neck before I have to put it down. Such was the case Saturday evening. So I have a feeding tube - why not use it? Paul filled the big syringe with Sam Adams, and John stood back as Paul opened the valve to let the beer flow. It didn't work out the way we planned... The beer sprayed up in a geyser-like plume mixed with foam and some other stuff that just had to have been part of my lunch.
We spent a good while in a futile attempting to cobble together an explanation for what we had witnessed.
The remainder of the weekend was less mysterious. Sunday I spent 10 hours in a recliner watching football and resting up so we could head out again Monday instead of watching the inauguration.
One reflection on the day in the recliner, in the form of a note to self: don't do that again. It was terrible from so many angles. Everyone else was skiing or doing something sort of fun. The recliner is neither self-loading nor self-exiting. Which is to say, once I'm in it, I'm in it -- with or without a house fire -- until someone rescues me. Joints that don't move much anyway get stiff. Everything itches. Muscles get stale, by which I mean they get fatigued from doing so much nothing that they stop cycling out waste and the mitochondria all fall asleep which causes the body to release lactic acid that has the effect of creating a pain/fatigue sensation virtually indistinguishable from how I used to feel after working all day with a chainsaw.
I'm just like a shark -- gotta keep moving.
Days 918-920, January 15-17, 2013. I just re-read what I posted yesterday. Someone must have spiked my Diet Coke. The World Cup in Spain? Yeah, and monkeys might fly out of my butt, too.
I left out some important information that is pertinent to considering how much racing I should do. I have gotten much slower in the past few months. In August, I was doing 20km in about 42 minutes (the National Team standard is around 45 minutes). Now I'm pretty consistently popping off 20K in over 50 minutes.
What happened? Well, when I roll over at night, my medial femoral condyles (knee bones) bang in to one another, as do my ankle bones. Also, my tibias ("tibii"?) generate enough friction between them that I find myself wondering whether they might ignite (this happens at night when my wits could be somewhat scattered, and it is very dark). What I'm saying is there is evidence I'm losing muscle mass in my legs. As my speed began to falter I looked for any reason other than "getting slow". I ran each of the following up the flag pole: My shifter isn't working right. Tire pressure is low. I'm too tentative in turns because my brake levers are not properly positioned. I think my right brake is rubbing. I'm sitting up too high. My saddle position is too far high/low/forward/back. The handle bars are too wide/narrow/high/low. My cleats need to be mounted farther back. My chain needs lube. I should use my Zipp race wheels. My cadence is too slow/fast. I need more /less caffeine/muscle relaxer/nachos/french fries.
After over a month of carefully designed testing, I have ruled out every alternative cause, leaving me with the inescapable conclusion that I am just getting suddenly and dramatically slower. And the most likely cause, given the timing is my use of a wheelchair. True, I wasn't really walking around all that much before the chair arrived. And true, I might have fatally spilled my brains as a result of a bathroom fall by now if I didn't have the chair, but, as I've said before, the ALS muscle mass rule seems to be "use it or lose it". And that's during the easy part of ALS. At some point, the rule becomes "use it and lose it anyway".
After the World Cup in Rome last May, I drafted a blog entry saying, roughly, "this ain't Make-a-Wish, it's bike racing". I was all jacked up after Rome, convinced I could smoke the French rider if I got another shot at him. Jean correctly pointed out that I would go straight to Hell, without passing "GO" or collecting $200 if I published it in that fashion.
This year it ain't bike racing, it's Make-a-wish, and I’m fine with that. If I'm able to pull on that USA jersey and roll up to the starting line even once this season we'll go ahead and call it a "win" even if I wind up a distant DFL (that is bikespeak for "dead... last"). I'm throwing the party after if it turns out I can make the suicycle stop at the end of the race.