In the early days of my disease, when encountering difficult things, or when someone would give me sympathy, I would say, “oh it hasn’t BEGUN to get hard.” For years. It wasn’t to be a doomsday preacher or anything, just acknowledgement of a fact. It was going to be harder someday, so I should both appreciate the good stuff while I had it and be prepared for when they did.
Things are officially Hard.
Several phrases describe me now that both hurt to hear and seem so surreal. “Late-stage ALS.” “Effectively paralyzed from the neck down.” Statement of fact. I don’t think that I get to have another birthday. True things. I am, technically, on a ventilator – while I CAN breathe without the AVAP, I choose to use it because it SO. MUCH. EASIER. But it all leads to I am capital D Dying.
Only I don’t FEEL like I’m Dying. Or even dying. I expected to be in a constant state of misery, when it got this far. I’m not. My body doesn’t work but nothing hurts. I feel FINE, it’s literally just that I can’t BREATHE. There is no deathbed, it’s just my tempurpedic.
My disease doesn’t feel awful, it just manifests as a thousand inconveniences. I would have posted months ago, but I was waiting to get my speech-to-text software running. Now that it’s installed and troubleshot and running, I find that it won’t work for me because my voice is too soft and the AVAP bakes be sound like I hab a code. It’s not the end of the world, it just means I must use the onscreen keyboard and type things out. Inconvenient. I can control my laptop using my eyes, but I can’t install anything because Windows’ little “are you SURE you want to allow this software to make changes “ prompt disables the eye gaze software so I can’t click Allow. Frustrating. But not a crisis.
Some day sooner than I would like, the ventilator won’t be strong enough. I’ll take the self checkout, because like HELL am I getting a ventilator surgically installed (you can fuck off with that ok thx bye. It is a viable option for a lot of people, but I absolutely do not want it). But that day will come, because I don’t fancy suffocating. And on that day, chances are I’ll feel fine except for breathing.
When I die, I’ll say goodbye, I promise. Until that day, expect more fuckery.