Sunday, March 28, 2021

Remember when you could go out and see friends without them coming by to see you like a patient in the hospital? That was nice; I miss that.

Saturday, March 27, 2021

I no longer have a gender. Rather, I have a wheelchair. I'm entirely absorbed into its gestalt. I'm now misrecognized as a man more often than ever before, almost every time I go out. I'm not surprised. I know that 82% of spinal cord injuries are suffered by young men, and middle-aged butchy women must be statistically negligible in that accounting.


-Christina Crosby in A Body, Undone

Monday, March 22, 2021

I never hated being short because being short is who I am, and I don't hate myself.

Sunday, March 21, 2021

People ask me things like, Did you always write? and Do you like to read? I'm never quite sure how to answer; I don't think they know what they're asking. 

These are the things I can do; I don't have a lot of options. It's no coincidence that I started reading more after my diagnosis. Everyone gravitates towards the things they are good at, and enjoy. Those things change for everyone, if maybe not so severely.

I can answer, Yes, I do like to read, and watch movies, and take down my thoughts, but I've only learned to like them. If they're trying to determine whether my choices are in some way genuine to my true self - and in that way, perhaps, less sad - I'll save them from wondering - they're not.

If you want to ask me a question, spit it out, bluntly. I don't want to waste time on dishonesty.

Friday, March 19, 2021

How would I have spent my teens and twenties if I had known what was coming? Do I only feel such regret because of how things ended up? How could it possibly matter? 

I got a new breathing machine yesterday; the first one didn't work so well. This one's better, and it has to be - the day will come when I can't breathe without it. It's mounted on a stand on wheels like an I.V. in the hospital. The last one came in a handheld case vaguely resembling a laptop bag. It seemed so easy - I could bring it on a plane or over to a friend's house. This one's much more daunting.

It's a rental from the supplier - there's a sticker that says so - a real vote of confidence to my longevity. I can't help but think that two short years ago, I was living in my own house, driving my own car, and walking (poorly) where I needed. The next two years will surely go as fast - it's hard to think about where I'll be.

Wednesday, March 10, 2021

 My eyelids have been fluttering. Imagine that. What happens if I can no longer blink?