Anger

Of all the emotions surrounding my wife's diagnosis, anger is the emotion that has surprised me the most. Objectively, I knew it would be part of the deal; it's one of the five stages after all! But undefined anger is a strange beast. In my 38 years so far, anger is typically tied to an event or person. You're angry at a situation. You're angry with someone because of something you think they did. Anger always has a partner.

I've found that so far, that's not the case. I suppose I'm angry at the universe in a sort of existential way: "why is this happened to her of all people?!" But mostly I just experience flashes of anger, and I find myself willing someone to give me an outlet for it. I've daydreamed a number of times on the metro about someone insulting me or trying to start a fight, so I have an excuse to beat the shit out of them.

Sometimes sadness turns into anger, like you go so far down the sadness well that you dig into the mantle of white hot anger. Sometimes you're so angry that it uses up all of your energy, and all that's left is hollow nothingness. Most of all, the anger just seems weird and out of place. I guess I should read more about it to find out the root cause in relation to grief, but if I had to guess, the anger is a reaction to the feelings of helplessness. You can't do anything about your situation, and that makes you angry.

The title

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.

Intro

My wife was diagnosed with ALS on October 13, 2019. Something had been wrong with her right hand for about six months at that point. The initial "diagnosis" from her general practitioner was possibly tennis elbow, or maybe a pinched nerve. She was prescribed a slightly stronger version of Aleve, and told to come back for a cortisone shot if it got any worse.

Sitting in the first of two ALS clinics we visited in back-to-back appointments, it was hard not to think back on that visit, a mere six months ago, and not want to murder someone. How could we possibly go from tennis elbow to terminal illness in the course of six months?

This journal isn't really intended for anyone. Granted, I'm putting it online, so it's not like I'm going to great lengths to keep it secret, but maybe someone else will find it, and it'll resonate, or provide solace in some way. I basically spend all day every day thinking about this, so more than anything I just want to get it out there. Like, physically out there; to remove it from my mind and transfer it to the internet. It's your problem now!

What I'm hoping to do here is document and process. I need to have a place to put down thoughts, other than sharing them with my wife, or allowing them to ping fruitlessly around in my head. I want to be able to look back on this in five or ten years and have a tangible record that this fucking shit sandwich did indeed happen. I want to remember the deep, bottomless sadness, the burning hot anger, the overwhelming feeling that overtakes me sometimes that I CAN'T DO THIS, and maybe, just maybe, also remember that this was life. A good life. The best life in a lot of ways- well, except for the ALS. A life worth living, and a life made so much better by having her in it.