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.
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.
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