Last year on this date, we got the official ALS diagnoses.
This was one of my first posts:
I'm scared of everything.
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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We've come a long way. I don't ask myself what do I do now as much. I'm not as scared. I can see beyond this moment but I generally choose to stay in this moment because it's good to be here, right now, with him.
He's fallen down many times in the last year and I know how to get him up. I've fallen down many times!! Mostly emotionally. But I know how to ask for help. I know how to get up.
You hear about "average life expectancy" with ALS: 2 - 5 years. The fact we have one year down looms over us. And yet, it's looming far away. It's not standing next to us, casting a dark, scary shadow. Every day is a gift.
This was one of my first posts:
I'm scared of everything.
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?
--------------------------------------
We've come a long way. I don't ask myself what do I do now as much. I'm not as scared. I can see beyond this moment but I generally choose to stay in this moment because it's good to be here, right now, with him.
He's fallen down many times in the last year and I know how to get him up. I've fallen down many times!! Mostly emotionally. But I know how to ask for help. I know how to get up.
You hear about "average life expectancy" with ALS: 2 - 5 years. The fact we have one year down looms over us. And yet, it's looming far away. It's not standing next to us, casting a dark, scary shadow. Every day is a gift.
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