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

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.

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.

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

Natty Update

I don't often give specific updates on my health - here's what's been happening.

I went to the ALS clinic yesterday after a Zoom call with my neurologist. It's been about 18 months since my last visit.

I weighed 122.5 pounds. Over the summer I weighed 119; June 2019 I was 114. My "natural" weight is at least 140. I'm eating more at my parent's house - everyone's happy with that.

A PT and OT checked the strength, tension, and flexibility in nearly every muscle from my fingers to my neck and back to my legs and ankles. As always, they're impressed and amazed with anything that works.

My lung strength and capacity have stayed relatively steady since my last visit a little above 60%. It's worse laying on my back.

My lung function has contributed to my difficulty sleeping, especially on my back. I'm getting a CPAP machine to maintain an open airway at night. It will take some getting used to, but if I sleep and feel rested, it's more than welcome.

The nutritionist once again talked about a PEG (feeding) tube as something to think about. The surgery and associated anesthesia requires a certain lung capacity they tell me. Sometimes people wait too long.

I'm getting a cup holder and phone mount for my chair, and an adjustable-height rolling table to eat and drink wherever I may be - like while watching a football game. 

My mom and I were in a fluorescent-lighted, windowless room for about 3 1/2 hours - a long time, but a Covid-induced improvement.

Would You Rather?

When I was waiting tables in college, some of us used to play exceedingly dorky, oftentimes gross bordering on disgusting, games of Would you rather? None of the quandaries were ever pinned to reality, but mostly served to pass the time with nonsensically humorous one-upmanship. Recently, nearly fifteen years removed from that gross-me-out, middle school level of comedy, I came up with a new, thoroughly realistic one.

Would you rather be able to walk, talk, or use your hands and arms?

 

I've given it a lot of thought and I don't know that there is a definitive answer, that is, each person might answer differently.

 

I would love the ability to walk, run, hike, do stairs, etc. So much that it almost hurts to think about. The personal freedom that it provides, the most simple human act of walking down the street, or through the woods, might alone be enough to fill every other hole in my life. I don't think I'd ever get tired of it - I might feel like I could do anything. 

 

I haven't yet lost my ability to talk, though it's certainly been compromised, so I’m sure I don't fully understand its impact. It's hard to imagine not being able to communicate with words, but as my voice has grown weaker, I've gained some perspective. I've lost a significant piece of who I am through my words. I act differently, more quietly. Wherever I am, I am less there without my voice. Having it back would certainly make me closer to the people around me, make it easier to have people around me, and undoubtedly make me feel far less alone.

 

Perhaps last is the outlier, the reality most difficult to imagine. What would your life be like without use of your hands and arms? We've all seen people in wheelchairs, making their way through life just fine. But your hands?! The hands do everything. If you were to care about your independence in the slightest, you need your hands. With full use of my hands and arms, my life would be wholly different. 

 

Maybe it'd be an easy decision, for me. Each idea makes my heart ache, none more than the first. But if I think it through, it's obvious which would have the greatest impact. I would choose my hands.

Fat Belly Dreaming

I think I had a dream last night where I look down to find a big, loose pile of flabby gut in the place of my admittedly growing belly. My dream-brain shrugged its brain-shoulders and said, Whelp, I guess that's where we're at.

Indeed, that's where we're headed. The rest of me shrinks while my belly fat grows.