We got the official you're going to die from ALS diagnoses a week ago.
Many months ago, when we first heard about ALS as a possibility, we spent a couple days in disbelief. My guy couldn't go home after work. We went out and talked about death and plans and stayed up crying until all hours.
Everyone told us to stop it -- stop googling info, stop scaring ourselves. When the guy told the doctor at Mayo it felt like this weirdness was spreading from his arms in to his right leg, her actual response was: is this a google diagnoses?
So we did, we stopped second guessing, we stopped talking about it, we stopped thinking about paralyzation, feeding tubes, death. We held on to hope that this would be an awful disease but not terminal.
Now we know it's terminal.
I can't see beyond this moment. Right now. I'm scared that he'll tell me he can't walk today. That he can't swallow. I'm scared when I hear him cough, he'll start choking and I won't know how to help him. That he's going to fall down in the shower and I won't be there to get him up. That he's going to start to die before my very eyes.
It makes me afraid to drive, afraid to work, afraid to make small talk with friends.
What do I do now?
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