I came up with the title of this blog in about a minute. I ran through a few options (My Journey with ALS...? No.) and picked this one on a whim. It was not a particularly good day, and I was feeling bleak, so a bleak sounding title appealed to me. That being said, it has since dawned on me that I was thinking about living without hope in two ways: first, what it means to live with someone who is dying, with no hope for recovery; second, what it means to live your life, to keep on living your life and finding happiness in a situation where there is no hope for recovery.
I listened to a couple episodes yesterday from this short podcast series based on the book Julie: The Unwinding of the Miracle. The book is about a woman who discovers she has stage IV terminal colon cancer, and what it's like to live life knowing you will likely die. She eventually comes to the conclusion that she should make peace with her diagnosis, but it struck me that ALS is so fundamentally different from even a terminal cancer diagnosis. She seemed to feel that having an 8% chance of survival was no cause for hope, and maybe she's right, but 8% is still basically a 1 in 10 shot. If the lottery had 1 in 10 odds, I would play that shit every day, and so would everyone else. That's the thing about cancer: there's always hope. Maybe there's too much hope, too much emphasis on fighting, but the point is it's not crazy to be hopeful. There are well established treatment options. Millions of people recover from cancer, although of course there are different types of cancer and cancer stages that affect survival rates.
No one recovers from ALS (barring a very, very small few documented "recoveries," but that's exceedingly rare and completely not understood). There are no real treatment options to speak of. The best thing you can hope for with ALS is that you die in 5 or 10 years instead of 1 or 2, but even then there are serious quality of life issues and a lot of room for debate about whether or not it's a good thing to live a few extra years completely immobile and likely on a respirator and feeding tube.
And don't get me wrong, there are things to be hopeful of in general in the ALS universe: there are some promising clinical trials, there's more momentum for research and funding, there's more awareness of ALS in general, despite it being relatively rare. But none of those things are going to help my wife. None of those promising clinical trials are going to be, or are even aspiring to be a cure, and even if they were, they're not going to be commercially available in her lifetime.
So what then? It's both terrifying and freeing. It's terrifying because you are helpless. I can research until my eyes bleed, but there's no hidden secret cure out there. It's just an endless sea of desperate people trying every supplement they can get their hands on and comparing notes, hoping to find that magic pill. It's terrifying because you know that no matter what, you're going to be alone and a single parent in probably 1-2 years, and that all that time in between is going to be spent caring for someone who is growing less and less capable. And it's freeing because now you know; there's no getting your hopes up and being crushed, there's no flying to a special clinic in Switzerland or where ever, it just is. This is reality now, so fuck it. Go on every trip you can. Do everything you wanted to do but haven't. Make the most of every moment with your eyes open and your mind clear. It's a terrible, shitty future, but that's then and this is now.
I listened to a couple episodes yesterday from this short podcast series based on the book Julie: The Unwinding of the Miracle. The book is about a woman who discovers she has stage IV terminal colon cancer, and what it's like to live life knowing you will likely die. She eventually comes to the conclusion that she should make peace with her diagnosis, but it struck me that ALS is so fundamentally different from even a terminal cancer diagnosis. She seemed to feel that having an 8% chance of survival was no cause for hope, and maybe she's right, but 8% is still basically a 1 in 10 shot. If the lottery had 1 in 10 odds, I would play that shit every day, and so would everyone else. That's the thing about cancer: there's always hope. Maybe there's too much hope, too much emphasis on fighting, but the point is it's not crazy to be hopeful. There are well established treatment options. Millions of people recover from cancer, although of course there are different types of cancer and cancer stages that affect survival rates.
No one recovers from ALS (barring a very, very small few documented "recoveries," but that's exceedingly rare and completely not understood). There are no real treatment options to speak of. The best thing you can hope for with ALS is that you die in 5 or 10 years instead of 1 or 2, but even then there are serious quality of life issues and a lot of room for debate about whether or not it's a good thing to live a few extra years completely immobile and likely on a respirator and feeding tube.
And don't get me wrong, there are things to be hopeful of in general in the ALS universe: there are some promising clinical trials, there's more momentum for research and funding, there's more awareness of ALS in general, despite it being relatively rare. But none of those things are going to help my wife. None of those promising clinical trials are going to be, or are even aspiring to be a cure, and even if they were, they're not going to be commercially available in her lifetime.
So what then? It's both terrifying and freeing. It's terrifying because you are helpless. I can research until my eyes bleed, but there's no hidden secret cure out there. It's just an endless sea of desperate people trying every supplement they can get their hands on and comparing notes, hoping to find that magic pill. It's terrifying because you know that no matter what, you're going to be alone and a single parent in probably 1-2 years, and that all that time in between is going to be spent caring for someone who is growing less and less capable. And it's freeing because now you know; there's no getting your hopes up and being crushed, there's no flying to a special clinic in Switzerland or where ever, it just is. This is reality now, so fuck it. Go on every trip you can. Do everything you wanted to do but haven't. Make the most of every moment with your eyes open and your mind clear. It's a terrible, shitty future, but that's then and this is now.
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