Chapter 21: Bringing Down the House
“I’ve often seen these people, these squares at the table, short stack and long odds against them. All their outs gone. One last card in the deck that can help them. I used to wonder how they could let themselves get into such bad shape, and how the hell they thought they could turn it around.”
As I lay helplessly on Iris’s bedroom floor, my two-year old daughter immediately sensed something was wrong.
“Oh no daddy. Oh no.” She came in for a closer look then demanded that I “clean it up,” pointing to the discernible blood stain on the white rug.
Still a bit stunned and a great deal dazed, I was somehow able to see into the future, knowing full well that I would be sporting a badass scar for the rest of my life.
The aftermath from my most recent fall.
To make cleanup easier, I shifted my bloodied eye off the edge of the rug and back to the hardwood floor where it needed no introduction.
Embarrassingly, my wife found me before I could try and collect myself. It must have been a sad sight to see the former personal trainer unable to even sit up.
“Is that yours?!” Jamie gasped, referring to the blood.
She came rushing in to relieve Iris from her post.
Just moments before, I was attempting to lay down on the floor next to my little girl (a feat I managed to accomplish in the end) when my arms gave out suddenly and my body pitched forward. Face leading the way, I met the hardwood. My left eye broke the fall and in the following instant I received a free neck adjustment.
This was an absolute tragedy. Leading up to this accident, I had managed to tie together a string of really good days. Jamie and I were even starting to let ourselves believe that my trial drug was working and had halted my progression. With my strength and confidence seemingly on the rise, I had begun to push myself more and more each day. Seeking assurances, I was constantly testing my abilities. Be it standing on one foot, not using two hands to carry a dish, or perhaps going up the stairs without holding onto the railing. I NEEDED objective proof that I was headed in the right direction. It was my latest obsession.
And it was this very pernicious need for testing that brought me down. For I could have used Iris’s crib, which was within arm’s reach, to assist in lowering myself to the ground, but I consciously chose not to. A decision that cost me.
Now, I’m bedridden, writing this chapter while trying to ignore the fasciculations in my legs. Those tiny constant visual reminders that my muscles are still actively dying. Post-fall, the disease progression has been rapid, validating this disturbing truth.
Hardly able to walk, barely able to speak, I’m heartbroken as I type this sentence. Another false alarm. Another indication I’m not getting better after all.
It’s become a morbid little dance the disease and I do, this back and forth. I know the steps well. One good week, two bad weeks, then two good weeks, one bad. I feel like Rocky trading haymakers with the Russian (at least, I hope I’m Rocky in this particular scenario).
Still from the comfort of my own bed, I take a quick break from the blog to play the “Placebo Game.” I flip my phone into the air and watch as it lands screen side up on the bed. This is bad. I give it another toss with the same results. Shit.
The odds of this happening, screen side up twice in a row, is 1 in 4.
Why is 1 in 4 so important?
While I can’t share many details about the trial I’m in because of an NDA (of sorts) that I signed, I am going to offer up this mind fuck I’ve been struggling with as of late…
There is a 1 in 4 chance that I’m missing out on PRECIOUS time with my family to fly to Boston every week and receive a fake treatment. What’s more is that I have to forgo other potentially beneficial therapies while I’m still in the trial. And based on the data today, we know that the majority of “responders” to ALS drugs have the best success if treated earlier in the disease course. In other words, if I’m going to have a realistic shot at survival, now is the key window. I simply cannot afford to go untreated.
With a 75 percent-chance of getting the real deal, I felt pretty good going in. However, that was two months ago. I’m not so sure after recent events. Combine the accident with today’s loss on my first attempt at my twisted little game of chance and I’m reminded of the harsh reality that I could very well be on placebo right now.
It’s not like I’m exactly feeling lucky.
Do you know how few people get diagnosed with ALS in a given year? Well, I do. It’s 1 out of every 50,000. Not bloody likely. But it happens. And, unfortunately, it happened to me. For reference, the chances of getting struck by lightning in your lifetime is 1 in 15,300 per the National Lightning Safety Council. That’s the kinda mojo I’m dealing with.
This whole catastrophe reopens the wound from a prior conflict when I again found myself on the wrong end of impossibly long odds (flashback warning). And in my own dramatic and embarrassingly short-sided naiveté, I thought it was the end of the world.
My sophomore year in college, a few of my fraternity brothers and I impulsively hopped in a car and drove almost two hours to La Grange, MO. The town was situated on the Mississippi River which granted it some unique privileges. Of most import to this degenerate gambler, it could host a dumpy little riverboat casino.
I wan’t even 21 yet. So I had to use a fake ID to get in, which in hindsight was pretty bold if not downright stupid. It was a bad one too. The forgery didn’t even have my photo, it was another guy on the Truman State wrestling team.
When the time came, I nervously handed it over to the bouncer for review. I must have been wearing a huge sign announcing that I was a “sucker” because he pointed out that I wasn’t 6’2’’ with brown eyes yet let me in anyway, with a devilish grin.
To steal a cliche, the flood of bright lights and slot machine sounds hit me like a tidal wave. My dopamine levels immediately went off the charts. This was my first time in a casino.
“A playground for adults!” I naively boasted.
But this was no playground. It was more like a buzzsaw, separating people from their money.
On the trip up, one of my buddies and I had concocted a scheme for how we would beat the house at roulette. It was a fairly simple and straightforward strategy.
We would bet $5 on black, knowing with every spin of the wheel there is just under a 1 in 2 chance (a coin flip) the ball will land on a black number and we would profit $5. This is known as “even money.”
If we won, we would take our $5 in winnings off the table and leave the initial bet for the next spin. If we lost (the ball landed on red or the zeros), we would double the following wager in an attempt to win back our money plus the additional $5 in profit we were gunning for on the previous bet. If we won after doubling our bet, we would take our winnings off the table and reset the bet to $5. However, if we lost a second time in a row… we would double the bet again.
And so on and so forth, we went on doubling our bet anytime we lost and profiting $5 every time we won.
We were committed to this strategy. And that meant being willing to wager large sums of money when it came up red many times in a row. But we knew that eventually, black would win again. It was both a certainty and a matter of faith. The only thing that could stop us was if red were to hit an ungodly amount of times in a row, enough so we wouldn’t have the funds to keep the double down strategy going. Now, what are the chances of that happening?
After many hours of grinding out $5 wins, we had a healthy stack of chips in front of us. The game plan was actually working. We were bringing down the house!
The clock showed an A.M. on it when our golden goose was finally put to the test. Red had just hit 5 times in a row.
My buddy and I exchanged a glance that clearly communicated, “Are we really about to do this?”
We doubled our bet, which at this point was up to $160.
Red again.
We doubled our bet to $320.
Red AGAIN!
Our diminished chip pile couldn’t cover the next wager so we both had to literally run to the ATM to reload. Bear in mind this was a large sum of money for a couple of broke college kids.
“Stick to the plan,” we agreed, hearts pounding out of our chests.
With a wad of freshly minted cash, we returned to find a crowd surrounding our table. This told me La Grange was not accustomed to seeing this magnitude of action. The pit boss even had to approve the bet because it was over the table maximum.
Green light received. We pushed $640 in chips out onto black and held our breath.
I had no idea at the time what the exact odds of red hitting eight times a row were, however, I was pretty damn sure it was… Not. Bloody. Likely.
But as they say, fate is a cruel mistress. And I was destined to learn a tough lesson that night when I saw the impossible happen. My FIRST time at a casino no less.
“What are the chances?” I kept repeating over and over to myself in a state of shock as I helplessly watched my tuition money being raked off the table.
The long, somber car ride home afforded me too much time to reflect on what had just transpired. To mitigate (or perhaps maximize) the suffering, I HAD to know precisely how unlucky I was. And it turns out the odds of red hitting eight times in a row in a game of roulette are roughly 1 in 300.
Not the one in a million as I had previously assumed. 1 in 300.
Sure, 1 in 300 isn’t bloody likely but it struck me as not obscenely unfathomable either. Especially, when you consider that those odds reset with every spin of the wheel. So it’s really an iterated game of 1 in 300.
Believe it or not, that’s the same odds your car will be stolen sometime in your lifetime. And I feel like we all know people that’s happened to. I sure do. It happened to yours truly! (Well, technically it was my truck).
Either I’m the unluckiest human on the face of the planet, or 1 in 300 chance “games” are being played out all around us in perpetuity, and they just happen to “hit”… All. The. Time. If I was a betting man (and clearly I am), I would gamble on the latter.
Now, earlier in this chapter, I performed a bit of sleight of hand. Maybe you caught it, but when I quoted that 1 in 50,000 statistic about being diagnosed with ALS, I specifically mentioned “in a given year.” That’s a very big difference from LIFETIME risk. So let’s bring this full circle and resolve this question; What is the risk that YOU will develop ALS at some point in your LIFETIME?
Well, it turns out it’s (plot twist) 1 in 300.
That’s like at least one, if not two, peers from your high school graduating class (you’re welcome Lawrence Free State Class of 2000).
Again, for context (and this time I’m not trying to do a magic trick, I promise), your chances of dying in a plane crash are 1 in 11 million. But we spend way more time and money worrying about that!
ALS incidence is on the rise too. The disease that makes you think of one man, Lou Gehrig, claims 6,400 new victims per year in the U.S. alone. In realty, ALS is not a rare disease at all. It just has a branding problem. Because you can bet your bottom dollar it will affect you or a loved one at some point in your life. So consider this my plea to start caring and advocating if you don’t already. You sure wouldn’t want to find yourself in my position, slowly wasting away with no effective treatments, forced to fly around the country in search of a medicine that could turn out to be as real as my fake ID.
Back to the protagonist, alone in his bedroom at the time of this writing.
While still nursing my wounds from the fall, I engage myself in another round of mathematical gymnastics. I’ve moved on from paltry 1 in 4 lines and placebo concerns to focus my attention on a more daunting problem. Given the shoddy track record of most every ALS research trial, I ask myself what are the actual odds this drug I may or may not be on even works?
I initially figure Vegas would handicap me celebrating five more birthdays at about one in a million.
However, after flailing in a series of cartwheels with that sobering number, I pause to posit that I have, time and time again, greatly underestimated the unlikely.
After all, I’ve lost a proverbial coin flip eight times in a row my very first time at a casino. And I’ve somehow gotten myself diagnosed with a terminal neurological illness after dedicating my life to health and fitness. So what I thought was impossible I can throw out the window.
I do know, however, that a cure for ALS is as inevitable as black winning at some stage in a game of roulette. It is both a certainty and a matter of faith. You just have to have the resources and fortitude to play long enough to see it come to fruition.
Subsequently, after recalculating my odds of survival I’m able to stick the landing on a much more favorable and reassuringly indeterminate answer…
It could happen.
And I hope you didn’t bet against me when it does.