Life or Death: A Flip of the Coin

Heads I win, tails you lose.

While I tend to like my odds there, I think the last time that offer actually worked was against Elizabeth when she was about three years old. Although my return on that gambit was solid (I believe chores were involved) I was significantly shamed by my beautiful wife for placing said wager against our daughter, and I came away with the distinct impression that I would be best served not to do so again.

Fine. Whatever. 🙂

In the real world, so much of life is about probability. Sure, decisions you make along the way absolutely increase – or all too often, decrease – your chances for success. But understanding probability dramatically improves your outcomes, if for no other reason than simply by (hopefully?) eliminating some stupid decisions.

Think about it. Flip a coin… you’ve got a 50/50 shot, heads or tails. Flip a coin 99 times, and even if you get heads 99 times in a row, your true probability of getting heads again, based solely on that next flip is, remarkably, 50/50.

In the big scheme of things, 50/50 seems like a pretty decent probability, right?

But what if those odds were not about who cleans up the Family room (it was her, for what it’s worth) or who takes out the garbage? What if it was about something much more substantial, like, say, life or death? Are those still good odds? Would you have to think twice about taking that bet?

Why do I ask? Well, I have a point that I will eventually get to. 🙂

I had my quarterly ALS Clinic a few weeks ago. You know the drill, I’ve written about it every so often over the past two years.

Quick recap. Scoring 0-48. All those normal people out there have a 48. Those of us who are living with ALS will, on average (but we know there is no such thing as average with ALS), lose about 2.7 points every three months. Once you get into the mid 20’s, the basic requirements of daily life start to get incredibly more, uh, shall we say, complicated. It doesn’t take a math major to figure out that the numbers can get problematic pretty quickly.

So, as for Clinic, I won’t go into all the sordid details but suffice to say I am farther south of 48 than I was three months ago.

Alright, I’ll go into a little detail. I will say that it was a brutally difficult reality to have now scored big fat zeroes in several categories – climbing stairs, walking, dressing, feeding. Zero. Zip. Zilch. You get the picture. I mean, I don’t think I’m too far out of line when I say that these are basic things a person should be able to do, right? No such luck for this guy.

I also took some blows to the scoring for respiratory sufficiency and orthopnea. And I’ll save you the Google search; orthopnea relates to difficulty sleeping and shortness of breath with/without head elevation. You’re welcome.

Also, quick aside, how about the whole “blows” to the scoring related to “respiratory” and “shortness of breath”? I mean, is that some punny stuff or what? Yeah, unfortunately, Dark Humor is not one of the ALSFRS-R categories, so it provides me zero points benefit in the scoring. Oh well.

Anyway, my freshly minted ALSFRS-R score is 20.5 – barely holding on to the Terrible Twenties. Sigh.

According to the scoring system, this result gives me an approximately 50% chance to live another nine months.

Basically, a flip of the coin.

Not about chores, or about who buys the next beer, or about who gets the first pick in the 1984 NBA draft (oh, too soon, Blazers fans?).

No, a freaking flip of the coin about life or death. Whether you will live or die. Damn.

Look, I am now 29 months into this end-of-life journey. I am very cognizant of the fact that nearly 50% of people afflicted with ALS die within 24 months after diagnosis. At this point, the way I am going to look at it is that I’m playing with house money and an uncapped credit line that does not have to be paid back. It makes my ‘All In’ bet on living Every. Single. Day. to the fullest much more enjoyable. 🙂

But I also can’t help but look at the calendar. You inevitably start to consider all the important things that lay beyond those nine months. Birthdays, and Anniversaries, and Holidays. Then it hits you… the today of next year is also beyond that window of time. Is this the last time I will see this date? Will this be my last World Series? My last time to bask in the beauty of an Indian Summer? It’s a crazy consideration, especially when you realize the probability is no better than a flip of a coin.

That said, I best get to living, right? Trust me, I’m already on it!

Well, at least I’m trying. I am all too aware that the next leg of this journey will be the most difficult yet. The losses to body and mind will be significant and will continue to mount. The scores will continue to drop. The physical and emotional and financial toll on me and those I love will be devastating, and only get worse. Such is the nature of the brutal, wretched, progressive disease that is ALS. Like it or not, it is what it is.

As I’ve said before, I didn’t choose this path, but I remain committed to continue my journey along it – even with the unfortunate understanding that each one of my future days has the potential to unleash upon me the worst this insidious disease has to offer.

Bring it on!

Sounds crazy, right? And to some degree, it probably is. And I’m not being naive here, but I am being realistic. I know that if I don’t face this devastating disease with every ounce of positive attitude and mental fortitude I can muster, the remainder of this journey will be doomed before I even begin.

So I look at it this way – on every one of those future days I will be determined to appreciate that the day is a gift that I am extremely blessed to receive.

I will be grateful to have been given it. I will seek out the joy to be found in it. I will acknowledge that another day is never guaranteed.

Despite the daunting challenges I will ultimately face, I have promised myself that my perspective on the blessings and the beauty in my life will absolutely not be left to chance.

For me, I am determined that every single day of this incredible life I have remaining – regardless of how many or how few they may be, will be…

Heads I Win, Tails I Win.

As those are odds I can live with.

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