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From: William Martiner Date: Sun, Jul 16, 2023 at 7:02 PM
Subject: Purposefully, usefully, gratefully, mindfully, and as well as possible for as long as possible
To: AvenueOneTeam
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Since early in 2021, I’ve held a secret.
I held it because I didn’t want to add to the overload of creating our company. I held it because I was afraid of what its impact might be. And, if I’m honest, I held it to make it a little less real for myself.
But now it’s time to spill the beans. So, listen up. I only want to say this once.
In February of 2021, I finally got the third medical opinion that the limp in my right leg was caused by the exceptionally rare neurological condition that ended the lives of people like Morrie Schwartz, Stephen Hawking, and Lou Gehrig.
ALS (aka MND, Lou Gehrig’s Disease, or Charcot’s Disease) selectively impacts the nerves that allow your brain to tell your muscles to move. Senses and cognition are generally uninvolved. There’s no pain. There is just the progressive loss of function until it reaches the muscles involved in breathing. It’s terminal, typically within five years, and has no cure. Medicine doesn’t know what causes it, or really much about it. There are no drugs in development that are likely to significantly change my course.
To borrow the opening lines of The Martian, “I’m pretty much fucked. That’s my considered opinion. Fucked.”
So, now what?
Well, my progression has been relatively slow, and ALS generally moves at the same pace throughout its course. So, I’m sharing this with you now in the full hope of being that one dinner guest who announces that they can only stay a few minutes as the first drink is being served and then lacks the good taste to leave before the dishes are put away.
I am committed to doing this as usefully and as well as I can. If nothing else in this life, I am a profoundly stubborn man. And, I will remain engaged with this thing of ours, of which I am so proud.
For as long as possible, my plan and my role will be unchanged. I will have the same focus, projects, opinions, peeves, and proclivity to blather on. In fact, the only rational response to this situation I can think of is to just put one foot in front of the other, to solve the engineering and logistical challenges my body now presents, and to carry on.
That said, not a day passes that I don’t marvel with gratitude for the people and resources that have somehow materialized, as if summoned by some strange synchronicity, since I got sick.
This gratitude extends to the astonishingly rare opportunity I have to wrap things up in the slow, lucid, contemplative way that this disease sits you down and demands. When you have an unpleasant roommate like this for as long as I have, you eventually make your peace. To be sure, it’s ongoing work. But, more and more, I’m embracing the adventure of scouting the path ahead with wide-open eyes.
After all, it’s unlikely you will be as lucky.
You see, you are dying too, ever since birth. This is not an abstraction; it’s entirely possible that you beat me to the punch. You might not have the time left that I do and, when you face it, you’re probably not going to get five years to meditate on it.
The truth is, you are every bit as fucked as I am. We all are. We always have been. I’m just now in better touch with the fact that so many work so hard to avoid – until it’s too late to either die or to live well.
So, what can you do?
First, I don’t want your condolences, and I definitely don’t want your pity – I find nothing more depressing. You don’t need to say anything and let me free you from any burden you might feel to respond to this email.
Aside from that, the best way that you can react is just to follow my lead and just keep on keeping on. Nothing has really changed.
I can assure you that I am still the same douchebag I always have been, and would appreciate continuing to be treated as such. The only practical difference is that I’m now considerably less concerned with my resume than I once was, and now I’m an even worse dancer.
Regardless, I have resolved to live purposefully, usefully, gratefully, mindfully, and as well as possible for as long as possible.
And, I applaud your courage to do the same.
Carpe Fucking Diem,
Bill