Just as sho’ as we livin’
Just as sho’ we born to die
–Bukka White, Fixin’ To Die Blues
An ALS patient, like me, can be forgiven for being somewhat preoccupied with death.
After all, when you’re told:
- there are no effective treatments
- there is no cure
- average life expectancy from time of diagnosis is 2-5 years
- every 90 minutes someone is diagnosed with and someone else dies from ALS
…well, now your fixin’ to die.
As I wrote back in March, cruelly there’s a shitload of stuff you must take care of before you die. I suppose you could decide not to. I suppose you could be a great believer in miracles, with unshakable faith that a cure will present itself in time. And while I still believe it’s the responsible thing to do to, to push through and get your affairs in order for the sake of those who will survive you, I envy that faith in miracles. It seems a far superior way to live out your remaining days.
Meanwhile, though I’ve been mostly at peace with the fact that I’m going to die, as I wrote in my memoir, I, Too, Heard The Owl, the part I’m struggling with is how, exactly, I’m dying — i.e., slowly wasting away.
I guess I agree with Neil Young that it’s better to burn out than it is to rust. Still, it sounds somewhat nuts to say what I’m thinking all the time, that if I had to receive a terminal diagnosis I would have preferred something like a late-stage, aggressive, inoperable and untreatable cancer, with maybe 6 months to live.
Instead, I’m in fixin’ to die mode for much, much longer.
Imagine, then, the reaction I might have when the founder of the excellent ALS advocacy organization IamALS.org tweets something like this:
For the sake of exploring this idea of fixin’ to die, let’s say that Brian is signaling an announcement for the absolute best-case scenario:
A cure’s been discovered that not only stops the neurodegenerative progression of the disease, but also reverses the damage that’s been done, restoring all upper and lower motor function that had been either impaired or lost altogether.
A myriad of confusing thoughts arise, including (small sample):
- Why, exactly, “By this time next week…”?! Now, for instance, would be nice.
- But, but, but…I’ve been fixin’ to die!
- So now I have to tell everyone that I’m not dying?!
- Will I be able to afford the treatment?
- I hope COVID-19 is over soon so I can throw a big party and travel around the world!
- I know what I said before, but does this mean I’ll need to go back to work?
- Note to self: Ask your son to return one of your guitars.
Needless to say, fixin’ to die is a lot different than, let’s say, fixin’ to go to the grocery store.
But here’s a crazy idea:
Perhaps I should be fixin’ to live…
Or, you know, forget the whole fixin’ thing and just skip to the living part!
Yeah, I think I’ll give that a try for a while and see how it goes. 🙂