Day 2291 - October 18, 2016. Doug passed away quietly yesterday, October 17, 2016, at home with his family. He showed unbelievable strength, grace and gratitude in his battle against ALS; he has been and will continue to be the exemplification of the standard to which we all hope to live. He touched the lives of thousands and will be missed dearly. Please join us for a celebration of Doug's life:
Visitation will begin Thursday, October 20 at 7.00pm at St. Therese Little Flower Catholic Church, 300 Mildred Ave NW. The Rosary will be recited at 7.30pm.
Mass will be celebrated Friday, October 21 at 2.00pm at St. Therese Little Flower Catholic Church, 300 Mildred Ave NW.
A reception will follow at 5.30pm at The Canyon Club, 911 4 Hills Rd SE.
Days 2076 - 2182, March 15 – June 30, 2016. Sports Update.
James has decided to graduate this summer, pack his bags (including his remaining two years of NCAA soccer eligibility) and pursue a master's degree at the University of Denver, whilst doing his best to keep the Pioneers net free from the balls of other teams, including, ironically, the visiting University of New Mexico Lobos!
Meanwhile, James is keeping himself busy playing for the New Mexico Sol, our local semi-pro team. To assure plenty of time for college players to decompress, pack, travel, visit family, take care of personal business, and register for classes, the Sol's last match is July 2; James will be in Denver for training July 3.
The Sol season has been just what the doctor ordered for James. Game pacing and tempo, and, though the Sol posted a better record last year, the comparatively porous defense brought lots of action to our boy, and created a wealth of material for his highlight reel, including a dozen or so saves that can only be described as "sick".
The Master's Degree? Even though this is the Sports Update, we can report James has been admitted to Denver's Business School's marketing program. How the demands of the grad program will fit with soccer? Unknown.
Abby. Our girl jumped in with both feet. From the first intra-squad time trials it was clear the work she put in over the summer when no one was looking except some creepy guys at the gym is paying off (Newsflash creepy gym guys: women know when you are staring, and the serious/myopic/enraged/puffy-faced-veins-bulging glare at the mirror you use to conceal your wagging tongue fools one person -- that dude in the mirror with the purple face).
The indoor season for the Tigers was not your dad's indoor track. San Antonio has no need for indoor on account of because it's never cold there. Plus, there are enough schools in south Texas to put together a Division III bus league for Winter track. Trinity's indoor season thus consisted of a couple of trips to the University of Houston's unnecessary indoor track, and a meet on Trinity's outdoor track, using indoor distances. Not exactly orthodox, but neither is what happened next. Every meet, all season, "indoor", outdoor, small meets, bigger meets, all the way through the outdoor conference meet, Abby, recorded at least one personal best. Every meet, inside, out, flat, tight turns, wide, sweeping turns. Her 400 is down to 59.5, 400h at 66.5, and the 100h to 15.54, she produced at least one personal best -- every meet. At the Conference meet, she contributed a leg to Trinity's victorious 4x100 and 4x400 relays, and crossed the finish third in both the 100 and 400 meter hurdles. In the last meet of the season, Abby and three teammates broke a ten year-old Trinity University record for the 4 x 400 relay. A fabulous freshman campaign.
Doug and Jean. We are still getting in occasional rides, but the format is reduced to Le Tour de Living Room.
However, it takes me six days to recover from the soreness generated by a 45 minute ride.
A few weeks ago, someone put two and two and two and two and two and two and a few more twos together, concluded my hourglass was both epoxied to the garage floor and due to be flipped. He sent an email to mutual friends to the effect that "if you have anything else to say to Doug, time's a-wastin'". Over the next several days, seemingly coincidentally, I received a number (such as 40) of emails that appeared to have been written off the classroom prompt:
Essay. 200 words max. Your friend was involved in a railyard accident, which left him coupled between train cars. The coupler cleanly severed his spinal cord at the waist, so he is not experiencing severe pain, and the coupler is applying enough pressure to his descending aorta to reduce blood flow to a trickle. However, his blood pressure is dropping steadily, and the doctors estimate he has about two hours. You can't get to the train, but the medical team will deliver notes. Use specific examples of good times and lessons you learned from him.
Many of the emails started off with intros like "word has it you may be crossing the River Styx soon..." it was a horrendous stretch, to be sure, but we now have pretty good reason -- including the opinion of a physician medical doctor and UVA grad type person -- to the effect that the acute problems were caused by a failed experimental change in my doping regimen. I was complaining of sedation, daytime, so we tried speed (by the FDA-approved brand name). As much as ALS can look like the Tasmanian devil, that was me. Had to taper off over a few days, and then up on another stimulant before the effects were gone. Meanwhile, no sleep, nausea, hallucinations, zombie Tasmanian devil. Not pretty. There were times I didn't know whether I was more afraid I would recover or that I wouldn't.
Medical guidance was like going fishing with a ten year-old... Toss in a worm on a bobber, let it sit ten seconds, reel it in so fast, the worm's skipping and bouncing along the water surface behind the bobber with only a bit more drag. Tie on a sparkling lure instead. Here it was more morphine/less clonazepam/less morphine/more this or that, or was it less? Hell, I don't know, I'm a zombie.
Overall, it didn't go well. I bounced in and out of coherence for days, finally maintaining more touch with reality than not. But, about 18 days after the episodes started, like the peasant slogging through the poop/mud street of King Arthur's plague-ravaged empire, I was able to announce (in my own way) "ahm nawt deed jet".
Last little bit of Sports Update.
"Man, I can shoot with my, left hand; I can shoot with my right hand. I'm amphibious."
This Mensanian quote is often attributed to Charles Shakleford, an NC State basketball player in 2012. I can't claim to have exhaustively researched these remarks, I distinctly recall Tim Holm telling me the story in the Modrall Sperling locker room at a time I can positively place prior to the invention of the internet. Now, of the many possible explanations for this, I would not rule out any dependent upon the existence of more than one NC State basketball player dumb enough to have assembled the words just so.
I can't shoot with either hand. Even before ALS.
I threw left, kicked, golfed, served volleyball, and batted right. I wrote left, played tennis and ping-pong either. Rifle, left; pistol right. Ate left.
And, relevant here, dribbled right and shot left. My dextrosity must be called randomlydextrous.
My inability to shoot a basketball was a lifelong source of frustration.
A few nights ago, I dreamed I was playing City league basketball. Jean, mocking me from the stands, to the effect it was no wonder my shots were consistently off their mark since I was cross dribbling -- bringing the ball across my body before redirecting it up for release at the top of the jump. Of course this occurred to me when, if truly a defect in technique, I can do nothing useful with the information. It has also come to me at an inconvenient, lo, dreadful, point in my athletic career where testing the hypothetical is not possible.
Therefore, I am asking a favor. Please test the hypothesis in the driveway and then post your comments about whether I had a great jump shot waiting to be discovered.
Something tells me data from real ballers will not be helpful because cross dribbling is, shall we say, elementary in the development of basketball handling, but let's see, hmmkay?
Days 2039 - 2075, February 8 - March 15, 2016. So, it's 2016, which I didn't expect to see. Six years ago a doctor told us I probably had ALS. I didn't believe her, I argued with her and convinced myself she was wrong. Jean was smarter; she believed it from the outset. I attacked it like a lawyer, using words in her written report that I surrounded with pieces of diagnostic criteria from respected medical literature such as Wikepedia. During our second visit, after 90 minutes of withering cross-examination, our 35 year-old neurologist surrendered and changed her opinion from "probable ALS" to "possible ALS". I gathered the exhibits from the table between us, spun on my heel, and walked out satisfied it was only a matter of time until someone figured out the problem could be solved by aspirin and Metamucil.
As we sit here we have been living with ALS for more than ten percent of our lives. That's a long time. We ought to be pretty good at it, right? But the truth is, when it comes to chronic disease, even the pro's aren't very good. The following is based on a true story, by which I mean it actually happened. Our hospice nurse came for a visit. She was obviously tired, rough day yesterday, "never know who's gonna die..." Those words hung in the air like a fart on a crowded airplane, they just wouldn't go away.
I gave my best impression of reacting indignantly, she apologized, but the truth is this is hospice. With nine months in hospice, I am an old timer, an aberration, defying the odds.
This may be a good time to update the ALS bitch list. My neck is not capable of holding my head up, so, I need support for my noggin or it falls. How far? Well that is changing, because my back is getting weaker, so more vertebrae fold as that progresses. My swallowing muscles are weakening. Still. It has been more than a year since I last ate solid food. My teeth are shrinking. They are getting thinner as the top and bottom fight each other during my struggle to move secretions to a place I can eject them before they can choke me. The only movement originating from muscles in my arms is a tiny bit of "grip" in my right hand. It's of no practical use, however, it does enable me to squeeze a hand. I have enough strength in my quads to assist when being moved to or from our bed, my wheelchair, shower chair, nap chair or toilet. The bottom half of my thighs have the basic shape of my femurs, which is primarily sad because my femoral condyles (my knee bones) bang into each other whenever they are in the same zip code.
Enough for now.
In simple terms, most of most days I am not at all comfortable. There are lots of days I find myself pretty certain the end can't be far. However, I also often can't say why. (****I wrapped up the original draft of this posting with several clever punch lines, classics, really, to the right effect that I figured posting it would assure my imminent if not immediate demise. Turned out, just drafting it was enough to seemingly put me on that rocket sled, pointed straight at a bridge abuttment. I drafted this weeks ago, have reviewed it countless times and concluded the only way to handle my misunderestimation of the power of the gaffe was to delete several sentences, do my best to forget them, and then ****).
Days 2001 - 2038, January 1 – February 7, 2016. AAAARRRGGHH!!! In the very last post of 2015, I explained, with the clarity of a Buddhist, how Everything Makes Sense. Perhaps it is no coincidence I got ALS, wrote this, and lived so long, or that you read some pieces of this. Maybe you told someone about Oso High, and somewhere downstream, this helped someone with ALS. Maybe that was part of a plan. I was feeling somewhat peaceful about all this as the curtain descended on 2015. And then God gave me... shingles.
Seriously!? And the purpose for this would be what, exactly?
Days 1964 - 2000, November 25 - December 31, 2015. Destiny interrupted?
My final thoughts about God and/or religion until next year. I have decided I (currently) believe in destiny. Specifically, it was my destiny to meet an untimely end near my 55th birthday. Something in the neighborhood of smashing my skull on an unfortunately located boulder or tree during a mountain bike ride or race.
Mercifully, God interrupted that destiny by giving me ALS. That had the effect of giving us the benefit of this (very) slow motion decline, providing a beautiful view of pieces of this life we would not have had if I just woke up one morning dead of a brain aneurysm, or with my brain in pieces on a boulder.
I have a strong pull toward having a construct where everything in my life is organized and makes sense. To have a belief system that allows me to put our situation in a tidy package seems important.
It also keeps me from having to consider the possibility that God is sort of a dick.
The crew from what is probably our final outdoor ride.
Happy New Year!
Days 1940 - 1963, November 1 - 24, 2015. ALS and cognitive function (Va. Tech people: thinking).
I am the last guy who should raise the issue, because I want to go all OJ on people when they bend down and yell something like "HI, DOUG. IT'S MARY SMITH. I WORKED WITH YOU FOR TWENTY YEARS AT MODRALL. DO YOU REMEMBER ME!?" ALS does not cause hearing or memory loss.
However, I am having increasing difficulty with... spelling. What the hell?
The problem has shown up in two categories of deficiencies, content (for example, "deteriate" instead of "deteriorate"), and double letters (is it "accross" or "across"?). Why?
More than any time in my life, my mind delivers a constant symphony of words. None of them escape in the usual way, so it is not that my brain is linguistically rotting from lack of use. If it's not ALS -- and it shouldn't be, on account of because ALS is muscular -- I have three theories. First, I read very little. Before ALS, I probably spent four hours reading every work day. Now, less than an hour, much of that is not at all detail-driven (skimming the newspaper and email). More substantive emails and articles about serious issues (such as: (a) why so many Americans are cool with the fact we have more handgun homicides committed with guns purchased at shows -- thereby avoiding mandatory background checks -- than all gun homicides in any other country, or (b) the likelihood of a rematch between Ronda Roussey and Holly Holm in my lifetime) probably get about 15 minutes of my attention every day. And I spend less time writing these days because I have less oxygen getting to my brain, and that means I get sleepy quite easily. So, that is my "visual" theory for the spelling difficulty.
Second, I believe there may be an "auditory" component to the deficiency. Because I don't speak, and therefore people speak to me less frequently, I have limited exposure to the sound of words. I think this might go a long way to explaining the content problem. "Deteriate" would never cross my lips, and, if I had a brain fart while typing before ALS, I could just say the word and instantly make the correction.
The preceding sentence reminds me of the story of my first client. During law school I worked for the legal aid organization in Charlottesville. The client sat with me and explained her husband had been denied Social Security benefits related to an extended period of disability following hospitalization as a result of a "massive internal fart". I am not making this up. I excused myself to make a copy of the papers she brought, and, not incidentally, to compose myself. I had a look at the medical records and was relieved to discover the disability had not been caused by the pathological containment of flatulence; rather, the culprit had been a "myocardial infarction", a heart attack. Perhaps his wife was laboring under the influence of undiagnosed ALS.
My third theory for explaining why I can't spell? I forgot. Because I have ALS.
Day 1939, October 31, 2015. Halloween. The wheelchair is becoming less comfortable. Taken to the extreme, it became an electric chair, and Jean was, of course, the promiscuous executioner. A natural pairing.
Days 1912 - 1938, October 4 - 30, 2015. Sports Updates.
Abby is midway through her first semester at Trinity, and knee deep in track. In New Mexico high schools, track has no indoor season, so training starts in January, four months before the state meet. For swimmers, like Abby, the training doesn't start until around March 1, with the first meet only two weeks away, and about ten weeks before the state meet.
Abby's biggest adjustment to college track will be the eight months of training, including four months of indoor and outdoor competition. It's a marathon, not a sprint. Even for sprinters.
Trinity has more varsity sports programs than many Division I schools, and, with an enrollment of 2300, I think that must mean about 25% of students are Tiger athletes. At least the track staff is committed to not letting the athletic tail wag the academic dog, a value I bet is promoted even by football.
Abby has discovered the Trinity faculty is pretty serious about the academic dogs.
James is living close to the other extreme in collegiate athletics. UNM soccer is far from SEC football, but you have to be proactive and focused to stay on top of school. He is a redshirt sophomore, meaning he has three years of athletic eligibility remaining. UNM has four goalkeepers on the roster, but only two travel. This is his first year of regular travel, and it's a trick managing travel for games scattered through the days of the week. Not surprisingly, James has been happy to figure it out.
Photos by JB Gallegos
Days 1909 - 1911, October 1 - 3, 2015. I have thrown some epic surprise birthday parties for Jean over the years. Last week, I set a new standard for pounds of funny per minute of preparation (by me).
The invitation read:
JEAN BANNON'S 56th BIRTHDAY, "Someday You'll Have Time to Get Back Into Shape".
Here's the thing. Jean Marie is hot. Not for-her-age-hot. Just plain old MILF hot. But not like Stiffler's mom; more like Giselle before the stress of Deflate-gate. She's my wife, you know (Jean, not Giselle). Nonetheless, this is an actual thing that really happened.
After a recent workout, Jean said "I am tired" to a gym acquaintance, who responded "don't worry, you will have time to get back in shape someday." Don't ask me why, but the conversation really got under her skin. So I'm thinking the best way to help her put it behind her is to make it the theme of the first birthday party of her late 50's.
(NOTE TO SELF: Probably should edit out some of the above before you send).
I know what you're thinking, "Great idea, Doug, how can I help?"
It's easy to do, just follow these steps.
- Put your junk in the box. (DGS -- double check, this might not be the first step).
- Show up before 6:45 or after 7:30 at 4250 Aspen Avenue NE, FRIDAY, OCTOBER 2.
- It's sort of a pot luck with a getting back in shape flavor. A-K, bring main dish for like six people. Guidelines. (a) gluten free, AND(b) calorie free, AND (c) carbohydrate free, OR (d) none of those, but conspicuously labeled as one or more of the foregoing, or some other category of stuff that is good for you. If you are H-Z, please have bring something other than a main dish, same guidelines. For example, calorie free Doritos, or a dozen gluten free Krispy Kreme doughnuts. H-K, I was messing with you. Don't call; you pick.
- Presents. Optional, but you can't buy them, and you have to take them with you. Wrap up the most cheesy piece of exercise equipment you have in your inventory. I'm hoping to see at least ten thigh masters unwrapped.
RSVP's aren't all that necessary since you are bringing everything except the drinks, but, if you want to be certain you will have an adequate supply of gluten/calorie/carb/MSG-free beer and wine, please RSVP (yes, I know the last two words -- five, after you unpack the French acronym -- are redundant, but people who speak American use RSVP as a stand-alone verb) to my sister, Michele, BY WEDNESDAY evening. Sorry for the short notice, but you still have time to get back into shape.
That's it, about 45 minutes to type out an email that pretty much composed itself after Jean Marie came in from her workout. Mom and Aunt Bea, with my sister Michele, took care of some decorative touches and drinks. The beauty of the invitation was putting the burden of the entertainment and food on guests, because they really produced.
We had calorie-free pizza, and gluten-free, organic, and other bad stuff-free cake. Gifts included Jane Fonda and Paula Abdul exercise videos, wrist weights, abdominal exercise machines, and some interesting nutritional supplements.
Yeah, I've still got it.
Days 1883 - 1908, September 5 - 30, 2015. Travel is an effective marker of the march of ALS. Air travel. It started in 2011. I was still working, and I had business in Oklahoma City. Only one night and out of town, so I had just a rolling bag. I pulled it on the plane behind me, lifted it toward the overhead bin, but it wouldn't go. It felt like it was loaded with lead. People behind me were waiting. I tried again. Same result. A flight attendant stood between the seats across the aisle. She offered to help, and I sheepishly agreed. I felt every eye on the plane watching -- puzzled, curious, scoffing?
Trips have been sufficiently scattered to see differences with ease. I have learned to expect surprise. Last week, we went to San Antonio to see Abby, three weeks into her freshman year at Trinity University.
Lots of good news. Abby loves college life.
Three weeks in, and she has a nice group of friends.
Abby is embracing Trinity birthday traditions.
She was still happy to see us.
Trinity is unreal. I have never seen the equal of its campus from a facilities standpoint (Mr. Jefferson's university, UVA, is more beautiful and historically significant, but doesn't match up to TU on a bricks-per-student analysis). As I pondered this, it occurred to me I have never been on the grounds of a private university, aside from track and field complexes, so I may have no fair basis for comparison. On the other hand, let me know about other schools where the parking lot nearest the main administration building has an area -- right up front -- for "golf cart parking only". No joke. There was also a sign posted along a main, central campus sidewalk, reading "No bikes. No skateboards. No golf carts." First world problems. Lucky, and grateful, girl.
Travel was rough, even with a gang of four. My sister Michele and our nephew Joe joined us for the trip. Good thing, there were no extra hands. Southwest Airlines is the best setup for wheelchair access, because the chair rolls to the first row of seats, and I can sit there since Southwest has no classes of seating. With other carriers, I have to be transferred to a rolling straitjacket, optimistically referred to by the airlines as an "aisle chair". The same product is modified only in minor ways for use in executions in Mississippi. The aisle chair is used to move me back to steerage. But not on Southwest.
The problem on Southwest is practically unavoidable, when it comes to serious gimps (me), the airline uses an inventory management technique pioneered by Waffle House -- FILO (first in, last out). That puts us on the plane more than two hours for a one hour flight. This seems to be for the purpose of leaving adequate time for everyone who has ever worked for Southwest Baggage Services to kick my chair with a steel-toed boot. The chair's adventures in cargo have left it badly scarred, like a piñata just before it bursts.
I fare better than my steed, but I whine more.
The ergonomics of a Boeing passenger seat are more suited to people with muscles that work. The narrow armrests allow my arms to escape, so we control shoulder stress with pillows. Headrests tilt slightly forward, so we keep my chin off my chest with a hard shell neck brace and an elastic strap system created by our friend Paul Mohr.
The overall effect is luxurious comfort much like being handcuffed to the concrete floor of an Al Quaeda detention facility. Minus the likelihood of beheading, torture, sleeping in your own feces and urine, etc... Otherwise, pretty much the same.
This next comment fits in the "just sayin'" category. Worldwide this year, more people have died trying to take selfies than in shark attacks.
Days 1869 - 1882, August 22 – September 4, 2015. Little Dirty Johnny Jokes.
The teacher says, "someone tell us a word beginning with the letter A." Johnny raises his hand, and waves excitedly. Teacher thinks, no, not Johnny on this one. She calls on Suzie, who says "apple". The teacher praises Suzie.
Then she continues through the alphabet. Each letter draws Johnny practically out of his chair. The teacher is cautiously trying to find a chance to call on Johnny. Finally, at R, she says, "OK, Johnny, tell us a word that begins with the letter R."
Johnny says enthusiastically, "rats." The teacher says, "very good, Johnny", and then he interrupts, adding, "with big (adjective/expletive) (plural noun/expletive/body part), this long."
You might wonder, as did my grammar consultant and mother, how this fits with the theme of this blog. It's simple, really.
The bike gang gathered Wednesday for a bike ride. With my secretion management issues, timing the move from the chair to the tandem is critical. I have to be moved quickly and smoothly, and we need to get moving right away. All to keep my airway open and dry.
Everyone knows the drill. Especially Captain Dan.
My wheelchair was parked next to the tandem. My left leg had been moved to the left side of the bike. The final step to the loading process is for Dan to pull my arms while I fire up the quads, and one or two people help lift and turn me into the seat.
On this day, however, Dan added a step.
Little Dirty Johnny Jokes follow a predictable recipe. An adult serves as the straight man or woman, proceeding with trepidation when Johnny turns an innocuous situation vulgar, as illustrated above. If you are over 13, and didn't attend Virginia Tech, you have probably figured out the gist of the sample LDJ Joke above. It's rude and inappropriate, but you probably don't feel like you need wash your hands and go to confession.
The step Dan added to the precarious load process was to wait an extra minute before "1, 2, 3, LIFT", so he could tell a Johnny Joke so vile, nasty, disgusting, vulgar, obscene, profane, and offensively gender specific that I simultaneously laughed, gagged, yawned, sneezed and aspirated.
No ride. ALS sucks.
Days 1845 - 1868, July 29 - August 21, 2015. I have never broken a bone. As a kid, I wanted to, because I hoped Kathy Tenant would sign my cast. Through 55 years of biking, football, wrestling, baseball, mountain biking, skiing, rope swings, hurdles, thinking about hang gliding, and even the suicycle, dating, marriage and practicing law, it just never happened.
We went for a ride this week. I know what you are thinking. No, it was not a bike wreck. Unless you have a causation compass that would make you an ideal juror for a personal injury plaintiff.
After the ride, I was heading to the shower on account of because I was stinky. As I made a left turn, bringing close to a wall on my right, control over the path of the wheelchair was lost. It may occur to you the end of the preceding sentence is constructed in a passive voice, leaving ambiguity as to who was in control when said control was lost. That was intentional.
The toe of my right shoe caught the wall, twisting my ankle and knee outward. The sudden deceleration caused my upper body to surge forward, including my hand, which shoved the accelerator to full throttle. The whole mess of me and the chair rammed to a stop in the corner where the wall ended.
My right foot rotated such that the toes turned from twelve o'clock to four o'clock. I was stuck like so, with the power on full. I would have screamed like an infant if I could scream like an infant.
You don't have to be a radiologist to understand this x-ray.
If, however, you went to Virginia Tech, the image shows a fracture of my fibula, the lumpy part of the outside of the ankle. Nothing to do about it other than ice. And better driving.
Day 1844, July 28, 2015. Five years.
Five years ago today, the nice man with a bow tie told us he had looked for anything other than ALS that could explain my symptoms, but he couldn't find anything. Then he gave a miserable speech he had probably delivered hundreds of times before and since.
The metric we heard time and again was "two to five years". And here we are. Other than not being quite dead yet, it has been fairly predictable in its unpredictable behavior.
Because ALS progresses imperceptibly every day, it is hard to appreciate how each day is the best day of the rest of your life, a concept I understood many years ago. Back then I knew I was living what I would one day look back on as "the dream". Still, I had no idea.
Even with the lessons of the years, I still shake my head at the notion that today will seem like it was a walk in the park in a few days, weeks or months. Seriously? If I haven't been able to wrap my head around the concept by now, it ain't gonna happen.
This is the price I have paid for the silver linings that surround us every day. Even at five years, I stand by my 2011 opinion that if I had to make my exit right around now, I would choose ALS over a garbage truck I never saw coming. Or even a heavily-insured Porsche driven by a drunk driver texting his mistress while keeping an eye on the porn video streaming on his laptop, which was in one hand of the hooker seated next to him, and who, upon exiting his vehicle looked straight into a television camera, excitedly admitting the foregoing, and then said "dear Lord, my conduct was wilful, wanton, reckless, and in conscious disregard for the safety of that man. I should be required to pay millions of dollars in punitive damages to his family, including all the money I have placed in the Banque of Zurich in account number 90087-5354."
I have thought this through. I've had five years.
Day 1843, July 27, 2015. "That's why I'm a J.D., not an RN".
I take lots of pills. Probably 20 every day. Most do nothing, and were prescribed under the medical philosophy called "You Have ALS, I Guess it Can't Hurt to Try".
Keeping them organized requires a plastic bin with compartments labelled by day and time of day. We refill weekly, and order anything in dwindling supply.
Despite quality control measures, mistakes will happen.
On Saturday, it happened. Without naming names, someone with whom I sleep prepared my morning medications by grinding up the pills in the box deceptively labelled "Sat. PM".
There are a few differences between morning and bedtime pills, most notably, I take sleep aids before bed. Of all the meds squirted in my feeding tube, I can state without reservation the sleep aids are the most effective.
They worked, this time at Abby's swim meet.
Michele came up with a way to decrease the likelihood of a repeat.
Days 1839 - 1842, July 23 - 26, 2015. I left out a few things in the update for the last post.
Our daughter, Jessa, married my son-in-law, Craig Walker, putting an end to their sinful cohabitation arrangement. The new virtue in their relationship has put a glow around them. The happy couple will honeymoon in Orlando after the mosquitoes migrate.
Jean and I celebrated the 25th anniversary of the end of our sinful cohabitation arrangement. Wait, Jean wasn't speaking to me, much less living with me, until the week before we got married. I am so grateful to have had so much time with the love of my life, my polar opposite soulmate, and best friend. Even though 20% of our days together have been shared with ALS.
Sports Update. The Albuquerque Sol made the PDL playoffs. James played out of his mind in the last regular season games (draw and a loss), recording several SICK saves. The League took notice, naming James to the national PDL Team of the Week. Next up, Lobos preseason is already under way.
Abby maintained her track fitness by swimming for the Tennis Club of Albuquerque. In the end, she smashed several of her personal best times, and qualified for the State's biggest summer meet. She also improved upon her track fitness by spending five or six hours per week in the gym.
As I write this, we have less than three weeks before she leaves for Trinity. I have never paused so long contemplating the use of an emotional icon. We will miss her terribly. Most teens do something by this point to make everyone more or less content with the lightening of the nest. Not this one.
My 55th birthday was roast format, which proved unfair to me because I can't speak. This becomes a problem when you find yourself in need of an immediate and pithy retort to a character attack or shameless fabrication. I anticipated this, however, and delivered an ex post rebuttal:
If anyone described illegal or immoral conduct, I either, categorically deny the event occurred, or, state as my complete defense, that I have confessed the same to an ordained catholic priest, performed the penance ordered, and I have been absolved.
If someone attributed conduct to me that my mother would find objectionable, and about which she was unaware until this evening, I deny the allegations unless they involve microwave ovens and cruelty to cats.
If comments were made that make you think less of me as a person, in truth, the speaker was attempting to project his or her own actions upon me due to the speaker's malicious nature.
If there were comments impugning my abilities as a lawyer, those comments are, on the balance of probabilities, true. Further, they are illustrative of my good judgment in surrounding myself with colleagues who were both smarter and better looking than me.
Finally, if anyone implied or outright said I was lucky to wind up with Jean or have such amazing children, I agree.
I was diagnosed five years ago Tuesday. At that time, I didn't expect to see 55, at least not mine. I figured I would make it to Jean's, but not this long.
At this point, we are playing with house money, most people with ALS are gone before five years.... The things I have seen in the last year are some of the most cherished memories I have. Abby blossomed as a high School senior. She graduated with a GPA over four point six, and became a true star on the track. Not surprisingly, she was Albuquerque's Scholar-Athlete of the year. James has been balancing academics and life as a division one athlete, and he has become a fearsome presence in the goal. Just last week, he was named to the Premier Development League national team of the week. Jessa got married to Craig in May in what Jean Marie has probably told you was a sweet wedding. Jean and I celebrated our 25th early this month. And I got another entire year of waking up next to a more beautiful woman every morning. I feel lucky to have gotten here. Of course there is more I want to see, aside from one little detail, my life is perfect. But I won't be greedy. Even though I am playing with house money.
People in my boat are lucky if they have one person in their lives to stand by them like dozens of you have for five years....
As it turned out, I pretty much covered the water front. It reminded me of the unpleasant task of simultaneous briefing, where lawyers have to decide whether to address an argument the other side might completely miss. On close calls, the decision usually comes down to an analysis of the intellectual horse power of the opposition.
This gave me much to consider...
To see a sample from the YouTube, click here.
Days 1831 - 1838, July 15 - 22, 2015. So, I have been asked why no blog posts appeared for over a month. The simple answer: computers are complicated. For the long answer to another question, click here, if, AND ONLY IF, you are over 17 years of age.
During the break, we put on the Fifth Annual Oso High Mountain Bike Race. The event was a smashing success, and brought in around $40,000 for the ALS Association. I didn't do much for this one on account of because I have ALS -- lots of it, even more than last year. Fortunately, Michael Donovan stepped in and steered the ship. With dozens of volunteers assisting, it was the best ever.
My sister Michele has moved into Jimmy's room, and is helping in every way imaginable. Nick has moved back to the Midwest because he missed the mosquitoes and humidity, and to be with the love of his life (first kiss at age two, honest).
ALS Boy continues to bulk up. Imagine you are lifting weights, specifically, bench press. You look up at the ceiling, set your grip, exhale three quick and powerful puffs of air. You deliver power to the bar, eyes bulge, face goes red, veins pop, and the bar moves. That's me trying to open my right eye when I'm tired.
Bumps in the road or changing G-forces occasionally cause choking or gagging when I ride in the van.
Bike rides are generally gag-dominated, phlegm-fueled, water boardings. Every now and then, however, the planets align just right, and we get a good one. This happened last night. The formula that we will try to replicate was:
Clear throat at start + open mouth (drying effect) + NO swallowing + sub-lethal overdose of glycopyrrolate + no stop at customary turn around = dry airway
By the time we rolled back in the driveway, my throat was so arid I felt confident an attempt to swallow would have ripped off my tongue and probably my Volvo (the term I use for thing that hangs in the back of my throat, the actual name -- accepted by the AMA -- is, well, it begins with a "u"), and that mess would have collapsed in my throat, and I would have swallowed my personal throat.
So I waited for a few drops of water, and now we'll never know. So that brings us up to date.
Days 1789-1830, June 3 – July 14, 2015. A Tale of Three Rides. The 5th Annual Oso High Mountain Bike Race was last weekend. The Stars and Stripes Ride was the Saturday before. A lot of the people who got me to Nationals twice were here. The folks at USA Cycling offered jerseys for national champions to give to sponsors and friends. I had a box waiting for the right day. Saturday was the right day. The right day for the jerseys, anyway.
Things were okay through about ten miles. Then things were not okay. I had a fair amount of goop in my throat, but I had it pretty well-controlled, by sort of balancing it over my windpipe and gargling a bit to leave room for air. This action made it, obviously, easy to enjoy the scenery.
All good things come to an end. Here it unraveled in five seconds. We hit a small bump, the goo ball moved and made me gag, my tongue stuck out, we hit another bump, I bit hard into my tongue, my tongue bled, the blood and the secretions brought up by the gag overwhelmed the gargling arrangement, and I gagged all the way back to the house.
The Oso High Ride (NOT the mountain bike race) was the next Friday in Angel Fire. It was planned as a late afternoon ride, but turned into a night ride by ALS Boy.
We got all duded up in the 2015 Oso High gear and drove down the mountain to the grocery store parking lot. Then the gang got the tandem ready to roll. Perfect time for me to alternate gagging and retching. I kept at this for a solid hour.
When we got rolling, my dad fell in behind us in the truck in case of something unpleasant. The sun set behind us as we made our way, uphill and into the wind, toward the "town" of Black Lake. We turned back at eight miles. During the stop, I tried to get the throat clear again. It was a task that took about 30 minutes, allowing darkness to settle into the valley. Then we headed back, with gradient and the breeze working in our favor.
The Generic Other Ride With a Better Result. The first ride after Oso High took place on a day when we failed miserably at keeping me hydrated. ALS People, here's an Oso High ALS Tip... Secretions are Easy to Manage if You Can't Make Them. Write it down.
Days 1785-1788, May 30 - June 2, 2015. We have gone through the Entrance of the only arm of the health care system with no Patient Exit -- hospice.
It was a hard swallow pulling that trigger, but now that we see how it works, we should have done it years ago. Hospice care is for people who have a terminal diagnosis and, according to any doctor, not much time left in the present body. I have never even met the doctor who signed off on me.
Here is how it works. The only health care you get is "comfort care". No "treatment". Guess what? There is no treatment for ALS except the drug that FDA approved in the 90's because it was shown to extend life by two months of Depends and drool cups.
When cancer patients enter hospice, chemo stops. So, too, radiation or any other treatment intended to slow or stop the disease. For us, that means the Depends drug is out. Woo.
On the plus side, hospice provides ev-ry-thang for comfort, and there are no co-pays or deductibles. Hospice is free. All the providers come to the house. Supplies, food and medications are all delivered.
And, when they are finished with me, I won't have to fill out a patient satisfaction survey.
Days 1777-1784, May 22-29, 2015. The Last Sports Update for a While. The Albuquerque Sol hosted the BYU Cougars, the latter being a really bad choice of names for a semi-pro soccer team for dozens of reasons, most of which begin with "NCAA". James played 90 minutes of nearly flawless goal keepage, including several creative and aggressive stops where the Cougars were threatening.
The Sol collected a 2-1 victory, but the Sports Center moment came when BYU was awarded a free kick from just outside the box. James was mauled by the tangled bodies of two or three Cougars, knocking him far into the goal. The ball bounced around outside the goal, but found the back of the net while James was still face down in the grass, dazed from an elbow to the head.
We had a perfect view of the mess from our post, about six feet from the corner of the field. No call. No call!?? This is where it went all ESPN. The fans and the Sol bench were in an uproar. The players were giving the officials the international body language for "WTF!?". My Aunt Bea got right in the line judge's face, and -- to my surprise -- he engaged, stammering "I didn't see it". I looked up to the scene in the goal. In the goal. My mom was in the goal giving the referee the business. "It's okay, I'm his grandmother" was the response she gave when he asked her to leave.
At the half, Sol personnel played the ALS card to fend off a threatened fine for failing to control their hooligan fans, specifically, two grannies. Mom did pick up a red card, but that was the limit of the sanctions.
Moments before the grannies got western on the refs. James can be identified by the red "0" on shorts.
Days 1768-1776, May 13-21, 2015. Sports Update (plus). Holy crap, it's a good thing I am retired. We had a few things this week. Mother's Day, AHS Athletics Awards, Jessa's birthday, AHS Academic Awards, State Track prelims, AHS graduation and State Track finals (the latter two occurred simultaneously). Oh, I almost forgot about the meetings to get me enrolled in hospice. And James played his first game for Albuquerque's semi-pro soccer team, the Albuquerque Sol.
To summarize... Abby was named AHS Scholar-Athlete of the Year, and AHS Spring Sports Athlete of the Year. The State Meet featured horrendous weather -- heavy wind both days, and intermittent rain and lightning delays. Abby easily advanced to the finals of both hurdle events. The final of the 100m hurdles was run in a direct headwind. Abby still managed to post her second fastest time, which was good for fifth place. Graduation started at 2:30, several miles from the State Meet. The 300m hurdles went off at 2:45. Running from lane 7, Abby got a fast start, and handled the wind flawlessly, stopping the clock at 47.06, a personal best and third place. She ran from the podium to the car, put her graduation gown over her track uniform, and was escorted to her seat during the final speech. My path to the coliseum was slower, and I arrived as "Ramirez"was called. This morning the Journal reported area coaches named her to the All-Metro Track Team. I forgot to mention the luncheon to recognize the top 20 students (by GPA) in the Class of 2015 (Abby was 10th).
The Albuquerque Sol is a Professional Development League team. James was looking for a net to protect before he leaves for Norway and Denmark, and the Sol needed someone to stop shots during the same time. We have a match.
The Sol dropped the opener to Midland 0-2. Midland plays well on the road for two reasons: 1) they are not in Midland; and 2) everything smells better in the places that are not Midland. Next up: Another team in the PDL (wifi is not working), Thursday at 6:05 pm.
Day 1767, May 12, 2015. Good health news. I am a cancer survivor!
The battle was not particularly protracted, nor especially valiant. I have to confess I didn't actually know I had cancer when I was being treated for it. But there I was, in our home office, with James to support me, five years into ALS, and for two -- possibly three -- minutes we made our stand against cancer. And we won.
So, it was a basal cell carcinoma (BCC). My doctor (I guess he was my oncologist on Thursday) skillfully removed the tumor from my forehead with a surgical instrument or potato peeler. A pathologist confirmed the carcinomatic nature of the specimen.
Over three million cases of BCC are diagnosed annually, which works out to about four for every gringo in New Mexico EVERY YEAR (if I have the math right). It's a miracle I haven't had it before (if I have the math right).
Days 1763-1766, May 8-11, 2015. Yet Another AHS Sports Update. District Championship. The big story was the wind. The Saturday final races were run in a cyclone. Wind seemed to be coming from everywhere at same time. Times suffered, but the meet was plenty exciting.
Abby delivered. Four dominant wins. The 4x100 relay, 100 hurdles, 300 hurdles, and 4x400 relay. Not many athletes ever have such a day.
Next up: State!
Days 1757-1762, May 2-7, 2015. AHS Sports Update. The Albuquerque Metro Meet is the biggest meet of the track season in terms of participation. The preliminary heats Friday were extensive. Five heats in each of the hurdles events.
Abby easily won her heats in both races.
Saturday the first event was the 100 hurdles. Abby did not hurry to the first hurdle. This strategy did not work that well, because the other girls did hurry to the first barrier. Abby put it in gear and began picking off the girls in front. With two hurdles remaining, she was fifth. A late surge and a perfectly-timed lean at the line got her across in second place.
About an hour later, Abby secured her blocks in lane six for the 300 hurdles. Any race longer than 110 meters run in lanes puts the athletes in a staggered start because the turns are longer for the athletes in the outer lanes. This means the runner in lane eight can't see anyone else in the race at the start. Abby was assigned lane six, with the athletes holding faster qualifying times in five, four and three. In this situation, you have to push yourself, because, if you wait to get your freak on until you see the real competition, the race is over. Too late. Knowing this, Abby hurried this time. One tactical miscalculation at the penultimate seventh hurdle cost Abby third place, but she still rolled to a new personal best time.
Next up: district meet.
Day 1756, May 1, 2015. Occasionally, just occasionally, I complain about unadvertised bonus features of ALS. Today is one such occasion.
My lower jaw is being operated remotely by Satan, Jerry Jones, or possibly Mike Krzyzewski, any one of whom would be justifiably pissed off at me if he got wind of things I have said.
1. The only thing I still do quickly and powerfully is my jaw snaps shut when I yawn. Satan Jerry or Mike does this, simultaneously protruding my lower jaw, so my upper and lower teeth chomp my lower lip. That lip looks like I chew on barbed wire.
2. When I sneeze, Satan Jerry or Coach K pulls my lower jaw out for the "aahhh" phase, and yanks back during the "choo" phase with sufficient violence that I have been left munching on tooth pieces.
3. With increasing frequency, Satan Jerry or Mike is forcing my lower jaw forward in order to keep my airway open. It makes me look like this:
It also makes my jaw very tired, which contributes to...
4. When I hang my head (which I do frequently to stretch my neck or spit out some of what I can't swallow), if my mouth comes open, Satan Jerry or Mike pulls my lower jaw forward even farther, making it impossible to close my mouth until my head is vertical and my jaw falls back.
Forrest Gump's mama said "Life is like a box of chocolates. You never know what you're gonna get."
ALS is like a bag of Tostitos. With some dog turds in it. You can quote me on that.
Day 1755, April 30, 2015. "You haven't been very funny lately." My favorite critic.
Of the words that pass through my head, perhaps .00001% make it out. Our daughter, Jessa, has been described as never having an unexpressed thought. I almost never have an expressed thought. We are a great pair. I digress.
When Nick helps me take a shower, he asks what music I would like to hear, then connects Spotify to a bluetooth Bose, and we rock out. I try to think of tunes he won't know, but would enjoy. Meat Loaf, obscure college bands, lesser known albums from superstars, music I was sure I had outgrown that never made my library's conversion from vinyl to digital.
Lots of music I last heard 30 or more years ago. As I sing along (in my head), I am shocked by my total recall of lyrics. Not a few tunes ; all of them. Not the choruses; every verse, bridge, intro or closing. I'm not proud of some of it, to wit: from the nonsensical 1974 Elton John piece "Solar Prestige", "... Koo, kar, kiree kay salmon / Hair ring molasses a-bounding / Common lap kitch sardine-a pour flounding"; or the horror of Terry Jacks' blubbering "Seasons in the Sun", "Goodbye to you my trusted friend / we've known each other since we were nine or ten / Together we've climbed hills and trees / Learned of love and ABC's /skinned our hearts and skinned our knees".
How much of my brain's hard drive is consumed by lyrics? I feel confident our long term memories have limits. I remember being cautioned by an expert witness I hired for an engineering case, "Doug, for each thing you learn about this, you will forget some poetry." For more than 20 years, my practice was limited to three areas. The essential framework of each is defined by a handful of cases we cited dozens of times every year in briefs I might review ten times before they were filed with the court. I can remember three of them by name. But I know the 16 digits on the calling card the firm issued me in 1986, several credit and debit cards, Andy Shirley's phone number (I last called in 1981), and every lyric in the Partridge Family's "I'll Meet You Halfway".
What if we could manage the contents of our memories the way we can our c:\ drives? How does a duck know what direction south is? And how to tell his wife from all the other ducks? There is still quite a lot happening in here. It just has a hard time getting out.
Days 1750-1754, April 25-29, 2015. Another sports update.
AHS. The Albuquerque Invitational was, for Abby, the kind of meet every athlete dreams of having. During Friday's preliminary heats, Abby had the fastest 100m hurdles time by over a second. Then, the third fastest 300m hurdles time, with a personal best 49.06.
Saturday morning, she opened with a win in the finals of the 100m hurdles and a new personal best 16.67. Click here for a short clip from the evening news.
About an hour later, she shot to the lead at the third hurdle, and held on, even with a significant goof at the eighth (and final) hurdle. Her time, 47.74, slashed over 1.3 seconds off her PR, which stood for all of 15 hours.
The double hurdles champion gave a finish line interview published in the Journal, that included this gem: "It's very surprising... Brion usually crushes me. I dropped more than a second on my best time today and I don't know how -- but I'll take it."
Go to the YouTube to see the race. Click here. One time fluke? Six days later, battling a stomach bug and a nasty home straight headwind, she lowered her mark another 0.4 seconds.
The next thing is the Metro Championships, which, in the hurdles, will be more competitive than the State meet, because there are some quick hurdlers at some of the local small and private schools. Stay tuned.
UNM. The Spring season is a wrap. James conceded one goal in 120 minutes, and that went in off a Lobo. Games are won in the off-season. James is all over that.
Days 1748-1749, April 23-24, 2015. Let the aspiration begin! If you are not sure what aspiration is, the YouTube offers an example (albeit extreme).
So, in short, it is inhaling liquid. We have known it was coming. It is not as fun as it sounds. I had a small ball of goo to cough up and swallow. The cough I could muster had just enough force behind it to pop the slime up to a point where it sealed off my trachea. My lungs were empty from the cough, so the price of my next breath was inhaling the goo ball. It was probably two teaspoons of stuff. Not a serious health event. Still, less enjoyable than a trip to the dentist.
As it turns out, the pulmonologist I have been seeing is the Eeyore of our team of health care providers. We spent a good chunk of time on the phone last night with one of the few Bannon sisters NOT named Mary. Ginny Pisano is a nurse with 200 (approximately) years of experience dealing with end of life decisions and care.
Dr. Eeyore has predicted my demise would come at the hands of choking or aspiration. Ginny P, however, says neither is realistic. I am not eating anything capable of choking me, and a Breaking Bad-type honk/wheeee episode of aspiration is next to impossible on a liquid diet, especially since I'm not shooting smack or freebasing marijuana (I think that is what was in the dish next to the bed if you clicked up yonder).
Chronic aspiration can lead to pneumonia (a/k/a "an old man's best friend"), and the body just shuts down over the course of a few days. Absent that, I will just run low on diaphragm strength, get high on CO2, and fade away. That, or I could plead guilty to a capital crime, waive appeal, and be treated as humanely as our dog (unless the crime occurred in Utah, where the firing squad has been recently reintroduced).
I ain't worried about no stinking aspiration.
ALS. A gift that keeps on giving.
Days 1742-1747, April 17-22, 2015.
The 5th Annual Oso High Mountain Bike Race takes place Sunday, June 7, in Angel Fire, New Mexico! More information soon.
Days 1729-1741, April 4-16, 2015. Sports Updates.
UNM Sports Update. James has played about 40 minutes in each of the Lobos home games this Spring. There was more action near the net in the Ft. Lewis match, where James posted four saves and an assist.
That is not something goalkeepers do every day. I'm speaking of the assist. For readers who are not futbol afficionados, I will put the feat in basketball terms. Russell Westbrook dribbles the length of the floor, and, just as defenders collapse on him, delivers a no-look, behind the back pass to Kevin Durant (in this hypothetical, Durant is not out for the season with a broken something), who lays the ball in the basket. Westbrook is credited with the assist.
Now, imagine Westbrook is standing under his basket throwing the in-bounds pass, as Durant slips away from the defense down court. Westbrook launches the ball into the outstretched hands above the rim for the slam. That, also, is an assist. And the basketball equivalent of what James did.
For his Sports Center Top 10, James snagged a save, then blasted the ball into the penalty area at the other end of the field into the waiting feet of Olav Hovstad. Two nifty touches later, Olav drilled the ball into the back of the net. Assist!
Next, the Lobos met Denver in Taos, where James played part of the second half and held the Pioneers scoreless in the Lobos 3-1 win. One more game in the Spring season, and then James will have a trip to Norway and Denmark to visit teammates.
Not a bad plan.
AHS Sports Update. The Albuquerque Journal reported that Abby is ranked second and fifth in the Metro Area in the 100 hurdles and 300 hurdles at mid-season. Oh, yeah.
The Marilyn Sepulveda Invitational is an annual mid-season meet pitting the top eight athlete in each event against one another, regardless of the classes that will apply in the district and state competitions in the next few weeks. Abby took fifth in the very odd 100 hurdles race, which was run twice because the gun fired twice even though the trigger was pulled only once. The starter didn't call them back because he concluded the second blast was the product of his imagination since the girls were still running, although some (including Abby) hesitated. As if that wasn't enough, the event was the first of the day, and went off earlier than the published time. One athlete was in the bathroom when the gun fired (twice).
In a combination sports and academic update, Abby has decided to go to Trinity University, where she will run for the Tigers.
Abby earned a generous merit scholarship with her preposterous GPA and the rest of her application.
She visited Trinity two weeks ago, and Jean marvelled at how un-Texas-like San Antonio is. "We never even saw a Lone Star". Jean must not have been looking very hard. The Google finds 786,000 things if you ask it to look for "Bubba San Antonio". There are more than 100 residents of the city who have authorized the phone company to list their names as "Bubba". The Alamo is in San Antonio, for crying out loud. The San Antonio Zoo has a Komodo Dragon named "Bubba".
Trinity University is an oasis of academics and culture, a wonderful place. I am certain about this, and I am happy Abby has found the ideal place. But San Antonio is in Texas.
Days 1720-1728, March 26 – April 3, 2015. Every now and then, an unexpected mechanical problem should be expected on a bike ride. That's what we got Tuesday. On the return leg from Balloon Fiesta Park, about a half mile in, we heard it and felt it. The noise was the same as your school bus made when Mrs McAree missed a shift, and someone, quite possibly you, yelled "if you can't find it, grind it", and Mrs McAree responded to the snickering by glaring back at no one and everyone through that big rectangular mirror with a look that said "screw all you little #@$%s! " That sound. That growl, and the accompanying pedal friction, meant we had lost one of the guides controlling the 20 feet of chain on the tandem. A weld had failed.
John, Dan and Nick are resourceful and creative. In 8000 miles on the road, we had never been stranded by a mechanical. This one had no on-the-fly solution. They evaluated the spare parts on board, considered the capabilities of the tool inventory, and tried three different approaches before waving the white flag with a call to Jean and one of the Marys (specifically, Lorrie) for a rescue ride.
24 hours later, John and Dan had the weld fixed (with metal, not duct tape). 48 hours later, we rode again.
Days 1714-1719, March 20-25, 2015. AHS Sports Update. Abby qualified for the State track meet in her second race for the season. She won the 100m hurdles by over a second this weekend. In the 300s, she missed the State standard by 0.6 seconds.
Two years ago, we made a deal: if she could run three steps between each of the hurdles in the 100s, she could pierce her nose. In setting her personal best this week, she made three steps look effortless. I reminded her a nose piercing is one of those things where, the fact you CAN do it doesn't necessarily mean you SHOULD do it. A lot like the implantation of a diaphragm pacing system.
Days 1708-1713, March 14-19, 2015. Not to beat a dead topical horse, but I have a bit more about death. Or "end of life", "passing on", "buying the farm". Whatever.
I have taken some time to reflect upon the options my pulmonologist gave me for checking out when the time comes. Either choice is a variation on drowning. One slow; one quick. With what we do for dogs illegal here in the Land of Enchantment, I am not a big fan of having so much information. For years, I have been writing stuff like what you see at the top of this page (generally, I have been opined ALS is a better short straw than a variety of possible lighting bolts). ALS gives you opportunities to prepare (in every conceivable way), and to tend to your bucket list. It also brings an astonishing truckload of blessings.
I stand by my comments. When I made them.
At those times, however, it was my understanding that ALS would end with an experience more like Blarney had. Morphine, family and friends, a James Bond marathon... From here. Armed with the information I have been cursed to possess. I think I would rather spontaneously explode.
Days 1698-1707, March 4-13, 2015.
Blarney Bridget Bannon.
She left us peacefully. The whole family was here. Her last few months were a spiral of dementia and dogheimer's. But the end was apparently easy.
Everything is not about me or ALS, but here is some irony. Before we came home to meet the vet and her assistant in our living room, we were at the pulmonologist's office. I asked where he thinks I'm headed with the symptoms in my throat. "Respiratory failure". What the heck does that mean? I pushed further. I will either choke to death or aspirate and get pneumonia.
After Blarney was gone, I surveyed the situation in the living room. I asked the vet "when the time comes, can you do that for me?" I knew the answer, of course.
Whatever. I know people. I can find a vet in a dark alley with a coat hanger
Days 1695-1697, March 1-3, 2015. Abby and I did the taxes yesterday. Our family's total federal tax bill for 2014... $3,874.00. We did that without a single lobbyist on the payroll. Don't spend it all in one place, y'all.
I'm going to throw some very round numbers at you. To give you an idea of how much my having ALS cost you last year.
$50,000 for social security disability payments.
$50,000 for Medicare payments for my medical care (that surgery I had in January is going to run you another $50K in '15).
$15,000 for Medicare payments for my prescription drugs.
PLUS the difference between $3,874 and what we paid annually when I was practicing law. How shall I say this? Without disclosing the specifics of my earnings as a partner in a third world law firm, our pre-ALS share of federal taxes was about 1.5% of the annual federal spending on ALS research. That's one guy (part of the 99%, not the much-reviled 1%) with ALS becoming a mooch.
It was not my long-term plan to become a deadbeat drain on our tax dollars, but here we are. You know why the government can't afford to get real muscle behind the search for a cure? Because it is busy printing money to care for the people who have it, instead of getting ahead of the ball and getting the job done.
That's probably why we can't afford to cure cancer, too.
Days 1691-1694, February 25-28, 2015. While we were in Utah, my quads melted away like sticks of butter in a microwave. It was almost a solid week between times my feet hit the floor. Interestingly, the first two rides after we returned were the same time we have been riding recently. The last three rides, however, have been the slowest ever.
At the moment, I'm not complaining. That's because we went out Tuesday, a gorgeous spring-like day, for our usual 16 mile trip to the balloon park, and it went very badly. Less than a quarter mile from the house, my tongue shifted back in my throat and caused me to gag. Twice in quick succession and I thought my lunch was about to come up. This would be a bad thing on the tandem, where I am seated in a reclining posture and my neck is not strong enough to lift my head from the rest. Good chance I would wind up inhaling a fair amount of what came up. I clenched my teeth and the lunch stayed put. As did every muscle in my body. We were stuck. There was no way I could ride. My legs were stiff and my whole body was in tremors. We turned down the hill and went back to the house.
I thought the riding might have come to an undignified end. A few days later, we bundled up again to give it another try. The only difference in the setup was tightening the neck brace. The theory for this adjustment? It was the closest piece of equipment to the problem.
Bingo. Why did it work? It keeps my chin up just enough to let me swallow some stuff, but not my tongue.
So I can still ride. Slowly. But tonight we saw the evening alpen glow that gave the Sandia Mountains their name ("sandia" is Norwegian for "watermelon", the appearance they have when the last five minutes of sun turn the mountains pink and the trees look like seeds), and that is a solid kick in ALS's balls.
Days 1689-1690, February 23-24, 2015. AHS Sports Update. Abby's senior swim season came to a fabulous close this week. Just two years ago, Abby made her first effort to swim fast. Yesterday, she led her 200 freestyle relay to an 8th place finish at the New Mexico State Swimming Championships. Even a few weeks ago, this seemed improbable, but five of the last six times she got wet, she lowered a personal best. Including three times at her district meet, and once again in the State meet. Nice timing.
Days 1664-1688 , January 29-February 22, 2015. The Book of More Air, Chapter Three.
SALTA LAYKA CEETY. There almost was no Chapter Three. Long story short. During the pre-op evaluations, we were asked about medicines. One item on the list was Advil, 1200 mg daily. "When did you stop taking it?" Jean and I looked at each other, "stop?"
The doctors shuffled their feet. "Well, don't take any more." The risk, they explained, was bleeding.
Surgery went as planned. Back in my room, I remember being offered oxy and fentanyl. That was it for Wednesday.
Thursday I wanted to report that standard doses of narcotics were not necessary for me because I respond to low doses just fine. The problems: I can't speak. I could not focus on the eye tracking computer because I had double vision from... Narcotics.
I hadn't eaten since midnight Tuesday, so I was looking forward to it. Sadly, about the time food showed up on the radar screen, blood tests were suggesting I was losing blood. With the possibility that I would have to be opened up to look for blood, food was off the table. Thursday faded into a fog of oxy and fentanyl.
Friday did not bring welcome news on the blood. I needed a chest X-ray and a CT of the chest to look for blood. Found it. In my left lung.
That led to the insertion of a tube in my chest to drain the stuff off. "Should make it easier to breathe" was the entire sales pitch to me. That was enough.
"This is going to hurt". To this point, I had been told "little poke", "big poke", "you will feel some pressure", and "say cheese", but there was no sugar coating here. I had been determined not to flinch throughout the various procedures. I clenched my jaws. No need. "Put another one in", I thought.
The rest of Friday and Saturday had some dark hours. I could hear people saying things they obviously thought I could not hear or would not remember. I had a nightmare that my air supply failed and I could not breathe. When I woke up my air supply had failed and I couldn't breathe. The alarm on the machine was wailing, but there was only one nurse in the ICU because the others had been pulled out to attend to a code blue.
We got through this one, and we also got through the blood continuing to drop after the tube went in. There was ultimately no need to have the doctors go digging around looking for a bleeder.
On Sunday, the blood was under control, more surgery had been ruled out. And the Super Bowl was on. Jean smacked me around a bit and encouraged me to recover right away. We stopped the narcotics, injected diet Coke, and the recovery was under way.
By Tuesday, we were discharged. The first Tuesday in February. I was the first patient discharged from the ICU in 2015. If you have not gotten around to New Year's resolutions, I have a suggestion: do not get admitted to an ICU. They must be like the Hotel California (you can check out anytime you like, but you can never leave...) Short stories short (including some food for thought for anyone with ALS thinking about doing this).
1. Three days with no food is harsh for ALS people.
2. Things got pretty iffy. My dad interrupted his vacation in Mexico to fly in Friday. My sister-in-law Ginny (Nick's mom) interrupted her life to fly in.
3. I was incommunicado for days. The dope dosage was so high I had double vision and could not use the Dynavox. At some point, very late in the game, the speech therapists gave us a letter board (someone points at letters, I blink to select). I was wild with unspilled thoughts after days of having them all trapped inside (I do still have some limited verbal ability, but the surgery and drugs left me too weak to squeak out even a simple syllable). I made everyone want to put a pillow over my face by rattling off a never-ending string of requests for adjustments I hoped would make me more comfortable. I was always wrong.
4. Utah had only implanted one DPS in an ALS patient before me. The device is available two ways. As part of a clinical trial at bigger medical centers. Mayo, UCLA... Through the trial, everything is free and the inclusion criteria are relaxed a bit. Why didn't we go this route? One of every three people who sign up go through all the testing and screening, pre-op counseling, the whole process. Then they are told "thanks, keep in touch, because we want to compare how long you live to how long people with the device live". It's actually worse in Europe, where the trial protocol is designed to rule out the placebo effect. Everyone goes through the surgery, but one of every three people receives a device that doesn't work. You think I'm making this up. I'm not.
Now, outside the trial, receipt of the device is guaranteed, but it is a $50,000 surgery (without complications), so insurance coverage is pretty desirable. The guidelines for coverage are pretty narrow. There is a window. If the tests show strong breathing function, you don't need it; if the tests show weak breathing function, the device won't help. You have to be right in the middle. I tested right at the top end of eligible, meaning if my breathing had been stronger, I would have been deemed too healthy for the device. And look how it turned out for me.
5. Nurses are a special breed. ICU nurses have to be able to put the hand over the flame like G. Gordon Liddy.
6. Doctors are curious and eager to learn new things. When we were deep in the poop on Friday, one of the doctors told Jean I had "suckered" her into believing I was a good surgical candidate with my "flirting". Really. Considering the train wreck I am these days, she must have a very low threshold for what constitutes effective flirting. Ask lots of hard questions. Do not smile.
7. I failed to factor into the equation the effect it would have on our team if things did not go perfectly in the OR. It was designed as five nights away from home; and it turned into double the plan. Plus no sleep, no communication with ALS Boy, shopping for an air ambulance if I had to go home on oxygen...
8. After all that, did it work? Well, in many ways, I am in worse shape than before the surgery. On the other hand, it is also three weeks later, and it is ALS. Mechanically, it works. It contracts the diaphragm, and that initiates an inhale. That's cool, as long as I'm about to inhale. If I'm not, then what happens next is very strange indeed. The issue is the DPS is set to 14 breaths per minute. My body may or may not be set to 14 breaths per minute.
Not long after I turned 40, I became familiar with DOSS (delayed onset soreness syndrome), the notion that old people experience soreness on a delayed basis after a hard workout. Should have kept that in mind.
After the worst of the surgery remnants were in the rear view mirror, we met with the Utah DPS team. I was given a choice of levels of stimulation, and they recommended that I begin using the device in increasing increments. Slowly increasing. The sensation is not particularly traumatic, and I probably plugged in for five hours the first day. A little more the next. Then, guess what? DOSS. I felt like a mule had kicked me in the diaphragm. I have scaled back considerably.
9. Bottom line: I was skeptical about the wisdom of this even after we arrived in Utah. But, each time I went there, I thought "not much downside, and might keep me comfortable, and -- the kicker -- the eligibility window will close." Boy, I would like to have a do-over on that analysis.
No matter how much we think we know about how things should turn out, we don't know how they will turn out. That -- as we say in track (and every other sport) -- is why we run the race.
That is also why we sign the ten page surgery consent form.
Days 1660-1663, January 24-27, 2015. The Book of More Air, Part Deux.
SALTA LAYKA CEETY (if you have seen the stage production to which I am subtly referring, say that out loud). I don't care who you are, some of this stuff is funny.
Travel with ALS Boy is becoming ridiculous. I have to be strapped in an "aisle chair" after I drive my chair down to the end of the jetway. If you have ever noticed an aisle chair, you will understand when I describe it as an instrument of torture. It actually looks like a very narrow electric chair. The real thing could not be more restrictive or less comfortable. And it would not hurt as long.
When we arrived in Salta Layka I was tied into the same type of chair and rolled off the plane into the jetway, where a bite of winter was in the air. The end of the retractable walkway is where we can expect to meet the wheelchair. Blessed are those who expect nothing, for they shall not be disappointed.
Forty minutes after our arrival, the chair was located and delivered to us. It had been taken off the plane and delivered to a different gate for an unknown or unknowable reason. While I was sitting in bondage, arms across my chest, hands on the opposite hips, it occurred to me I had dragged Jean and Nick on a silly week-long excursion. A diaphragm pacemaker is arguably a temporary luxury of no significant long-term utility. Akin to rearranging the deck chairs on the Titanic. After it sideswiped the iceberg.
We checked in at a hotel on the University of Utah campus. Nick went out to hunt for and gather supplies. He came back, proudly reporting he had found Polygamy Porter. Jean and Nick knocked down a few, but not before we received a call from the front desk advising we had "strike one", a noise complaint. Less than an hour later, "strike two". We shut it down. Whatever we were doing to offend. If the "noise" we were making was problematic, imagine how the contents of our trash will go over tomorrow.
You can't be perfect every day. Mistakes will be made. I am taking a new medicine that helps control the accumulation of goo in my throat by drying out the oral secretions a bit. We get my drugs in liquid form when available. My dose of this stuff is 5ml daily.
Monday morning, a mistake was made. 85ml. Seventeen days worth. Oh well. The timing was good. We were due at the hospital in less than an hour. The details are unimportant. We are a team. When the Patriots annihilated the Colts of Indianapolis last weekend, the headline didn't read "Patriots 45-7 over Andrew Luck.
In the late 80s, I traveled to Mexico with friends. Mazatlan? Mexico City? Acapulco? Cancun? Puerto Vallarta? Nope. Bahia Kino, a shrimping village on the mainland side of the Sea of Cortez. Every afternoon and evening, the bars were filled with shrimp people, their brown faces dull but reflective from the layers of saltwater, sun and sweat, and every morning, the sunrise was announced by the shriek of unguarded table saw blades shaping chunks of palo fierro (iron wood) into sea creatures.
One morning, I was cooling off from a beach run in the turquoise water with a tennis ball and two tired dogs. I took a step forward in chest-deep water, but my shin banged hard against something that felt like a submerged cinderblock. I yelped in pain, but the discomfort faded quickly to throbbing, burning, then nothing.
Several hours later, we were hiking a spectacular seaside desert mountain with giant saguaro and yucca decorating the 50 shades of red earth. My leg turned pink. It began to itch. Then sting. Then burn. Throb. Yellowish stuff erupted and oozed down over the hot skin. It was difficult to walk. We hobbled to the jeep and drove back to Kino's public health clinic.
When it was my turn I was examined briefly by the doctor (or whatever). "Sting ray", he grumbled. "Vamos a la pharmacia", were the only words he spoke before he scratched off a shopping list for us. This was beginning to make sense. Health care is free in Mexico, but why should the clinic have to burn precious supplies on the gringo? Fair enough.
We walked the 100 meters down the dirt road main street to the sign of the neon green cross. My leg was singing, but we were in good hands.
I handed the list to the pharmacist (or whatever), and he began gathering. Six of everything. Vials of medicines, syringes, needles, gauze, tapes, ointment, tongue depressers(?).
Again, fair enough, right? I don't pay taxes or bribes in Mexico, so it is reasonable for me to provide the supplies for several procedures. Back at the clinic, I handed the bags to the doctor (or whatever), who gave it to a nurse (or whatever), who left the room.
The "doctor" motioned to the table, I got comfy, he offered me a bottle of tequila, which I politely -- and mistakenly -- declined. He poured some on the wound and dug in with a scalpel and tweezers.
Days later in Albuquerque, the remainder of the barb was removed and I received proper sutures.
Sting ray sting care in rural Mexico is to sting ray sting care in the United States as ALS care in New Mexico is to ALS care in Utah.
This, we learned Monday when we visited the multidisciplinary clinic at the University of Utah. When they find a problem, they put the University to work. One example. Last winter an ALS patient who had been an avid skier, ran out of options in traditional adaptive skiing. The neurology and rehab people put University engineers to work. Today, the Rehab Department sports a sit down ski that can weight shift using a wheelchair joy stick. They also have a sailboat.
We have kick-ass green chile enchiladas. Surgery to implant the diaphragm pacing system is Wednesday.
Days 1657-1659, January 21-23, 2015. The Book of More Air. Chapter One.
We have decided to travel to Salt Lake City for final screening and to decide whether to put my diaphragm on a pacemaker. If the doctors at the University of Utah don't kick us out, and we don't bail out, it will be a week of tests, chats, surgery, recovery and fine tuning.
From reviewing the product information and the consent documents, I have only one significant reservation. The device causes a fixed rate of respiration. Let's say, hypothetically, you are watching certain parts of "Don Jon", and you become concerned about the safety of one of the characters. As I understand it, if you allow your rate of respiration to climb, your heart explodes.
That will be on our list of questions.
Days 1652-1656, January 16-20, 2015. AHS Sports Update. Abby's 200 meter freestyle relay team qualified for the State meet with a margin of seven seconds. One month out from the big dance, the Bulldogs sprinters are ranked third in the State. Abby looks like a torpedo in the water.
Days 1647-1651, January 11-15, 2015. Sometimes life ain't fair. And, sometimes, some dumbass makes it worse. Here is a night in Jean's life. We generally head that direction between 11:30 and midnight. Most nights, Jean has Nick to help get me ready for and in bed. If not, and Abby is already in bed, Jean is on her own to help me out of the chair by gently pulling my arms so I can partially stand, then we pivot together so I can sit on the bed.
Getting my head to the pillow is hazardous. And lifting my legs onto the bed after is a trick, because the core isn't what it once was, and my upper body tends to pour towards the edge of the bed. Once I am horizontal, she has to roll me to one side, and position my hands and feet, along with getting just the right amount of pillow support under my neck.
During the night I am a murderer of Jean's peaceful slumber. I can turn my head, move my arms a few horizontal inches, and my legs are somewhat helpful (certainly better than the alternative). I can curl them and extend. The most ballet-like maneuver I can accomplish goes like this: dig, if you will, a picture (anyone know that phrase as lyrics? Answer at the end) of you, on your right side in bed. Arms irrelevant, but in front. Left leg over right in sort of a running position. I can sleep like so for one to four hours, depending upon the metabolization rate of sleepy drugs. We only reach the outer end of the range during the first shift. After that, the range is cut in half.
When I wake up, the cause is typically my shoulder or hip, from the pressure of supporting my weight without the benefit of cushy, padded muscles. If I can relieve the load, I can avoid waking up the chica next door.
Time to put the ballet training I didn't do to work. The key here is getting my left leg to the other side of the right one. It's a two step move (not a two-step move; it's a move with two steps). First, get the left knee over the right. I bend both legs a little, and pull the knees close. If I can reach the foot board with the left toes, I use that platform to generate speed and power to get a bit of lift needed to get the knee bone over the other knee bone. If artfully performed, this leaves my left foot on the other side of the right shin. The challenge is getting some air between the left heel and the mattress at the same time as I press the right shin flat against the mattress. Then, the money is all on the table. I simultaneously pull my left heel back and extend my right leg. Because I have spasticity in my legs, the quick motion sends both legs into a spasm that locks the knees straight. If this reaction takes over before I make it past the high spot, the whole left leg jerks forward, and the foot and the knee are back where they started. Worse, the commotion usually upsets the balance of my hips, I roll to my back, and my legs are crossed. Screwed.
If my pirouette is flawless and I stick the landing, I may get another hour without having to call for help. Either way, I will have to roust my Jeannie. On an average night, this will happen for the first time not much more than two hours after we go to bed. That's when the fun starts.
Jean has to decipher my attempts to form words, and then move pillows and various body parts until I am comfortable. One to five times a night she also has to help me take a leak. Another unadvertised treat ALS brings is weakened muscles around the bladder. Everything caves in more and you get the sensation of having someone pushing right down on the bladder.
So Jean must have nightmares about nights in the middle of the day.
Let's complicate the nights, hmmmkay? Our beloved golden retriever, Blarney, just turned 13. In goldens, 13 is the equivalent of 135 human years. Blarney was recently diagnosed with Dogheimer's. She barks at imaginary letter carriers. Forgets whether she has eaten, where she goes to pee, the difference between night and day, and what that wet, pink thing is that hangs out of her mouth. In the middle of the night, she is inconsolable. Yeah, Jean gets to deal with Blarney, too, and the two of us (the dog and I) are not on the same schedule.
At the beginning of this entry, I promised part of this story is a tale of "some dumbass" making it worse. That's me.
Not long after Halloween, photos of golden retriever puppies appeared around the house. Abby's way of letting Santa know what was on her list. The technique has historical precedent in our family dating back to 1990, when I lobbied (successfully) for a new Toyota 4-Runner. Cars, skis, pets, even a sailboat.
We (I) cratered almost immediately. Her name is Lucy. So, now we have puppy separation anxiety, canine Alzheimer's and dementia and ALS under one roof. Nick is moving back to the midwest in five months, Abby leaves for college in seven months, and Jean's hands are full.
I have long followed a formula for determining the maximum number of golden retrievers in the household: n = x/y
Where: n is the maximum number of goldens; x is the total number of human hands in the home; and y is the number of humans in the home. Lucy = n+1
Days 1642-1646, January 6-10, 2015. If a city has consciousness, Albuquerque is a city that thinks of itself as a sports town. The hard truth, however, is not much happens here. The highest level accomplishments the Duke City can claim are a 2003 NCAA skiing championship, and two trips to the final four by the Lobos men's soccer team in the past decade. UNM football has managed fewer than a dozen wins over the last five seasons. The basketball team has plunged into mediocrity again, and, historically, the best years are a list of premature ejections from the NCAA tournament. On the pro level, we have minor league baseball, semi-pro hockey. And we sent an NBADevelopment League team into insolvency.
The hands-down greatest moment in Albuquerque sports history is when Lorenzo Charles redirected Derek Wittenburg's shot at the buzzer (Wittenburg claims it was a "pass") into the hoop to claim the 1983 NCAA basketball championship for NC State. In the mayhem that followed, the most prolific hugger in the history of basketball, NC State coach Jim Valvano, scurried the floor like a panicked cockroach, searching for someone or something to hug. An iconic image in tournament history.
A few years later, Coach Valvano was diagnosed with an aggressive cancer. In 1993, he gave a speech at the ESPY Awards, including the now-famous words "Don't give up. Don't ever give up". Also during the remarks, he announced the joint creation, by him and ESPN, of the V Foundation for cancer research.
ESPN has put its weight behind the project. Every December, the network celebrates "Jimmy V Week", featuring the "Jimmy V Classic", a showdown of top college basketball programs. During the week, paid commercials are reduced, the airtime filed with V Foundation promotions, PSAs about cancer, replays of Valvano's speech and footage of the wide-eyed coach darting around the floor of The Pit after NC State completed that improbable Cinderella run through the ACC and NCAA tournaments.
The V Foundation is a major player in cancer research. In nearly 22 years since it was created, the V Foundation has awarded about $130 million in research grants... Roughly the same amount of money as the Ice Bucket Challenge raised for the ALS Association this summer... Let that soak in for a moment.
For now, there is more money than great ideas in ALS. How do we come up with more great ideas? Follow the example of the V Foundation and fund scholarships for promising young research scientists who might otherwise find more lucrative areas to study, like male pattern baldness or crow's feet.
Where there isn't enough money in ALS right now is patient services. This is the business of the local chapters. I'm lucky to have great family and friends, insurance and other resources to allow me the luxury of fabulous care and fancy technology to prevent ALS from silencing me, even though it took my voice. Lots of people who are not equipped to handle the disease financially or otherwise, wind up with ALS. Many of them would be lost without the services provided by the local offices of ALSA. If you can help, don't be shy. Click right here to donate to ALSA. Thanks!
Days 1637-1641, January 1-5, 2015. The Year of Breathing In and Breathing Out. In our family, every recent year has been tagged with a theme. There are about a dozen reasons this one fits, only a few of which have to do with my diaphragm.
Please stick with us. I have a weird feeling about 2015.
[Think Hurricane Katrina for a moment]
I bought a cheap watch from a crazy man floating down Canal. It doesn't use numbers or moving hands, it always just says "Now". Well, you may be thinking that I was had, but my watch is never wrong. And, if I have trouble, the warranty says "Breathe in. Breathe out. Move on."
- Jimmy Buffett