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.
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.
If it helps, you should be able to adjust the windows settings to disable that annoying UAC prompt for software installs. Do a search for Windows Account Control settings, and drop the slider bar all the way to the bottom–“Never Notify”.
Vashti, your attitude about all this continues to be inspiring. I don’t think I could handle what you’ve had to go through these last few years with even half the grace and good spirits you’ve shown. I just wanted to say thank you for being a part of my life!
That worked like a charm. Thanks!!
It’s so strange. Parasocial relationships. I don’t feel parasocial. That word seems so negative… I always think parasite…. but it’s not like that at all because I’ve come to care and I’ll mourn when the time comes. Glad to hear from you!
Love the fuckery and your irreverence.
Keep it up until you decide to checkout!
Think you’re terrific!