I slowly seem to degrade over time. I lay down most of the time, but still manage to ride a bike. I’m in weird shape because when I was disabled I was an amateur racer. I never lost my race legs. On a bike, I’m as close to normal as I get. However I’m easily injured as a result because I’m so disproportionately strong in a singular activity while weak everywhere else.

The hardest part has been coming to terms with my limitations due to what it takes for me to limit the ups and downs for a more stable life where I can sleep at least 5-6 hours every night. I’m so close to being “normal” that it is hard to admit my limitations to myself. I look fine. If all I do is stay laying down at around 30 degrees, I feel fine for the most part. There is always some pain but if I stay laying down and don’t do much for several weeks in a row, the pain can almost go into the background. However, I still cook my main daily meal every 8-14 days. I did that for an hour yesterday. I can feel that still today. My pain stacks daily like that. I can push really hard for one day and can accomplish about what most people could in a day. But if I push anything past around an hour, It will take days to weeks for me to recover well enough to sleep. I’ve done it many times, but it has become a thing I dread.

I can handle the pain part okay, but the psychology of weeks spent like a zombie without focus is unbearable. I can’t tell you how many times I was working on some hobby project that got shelved because of weeks spent in a zombie like state, and all the times I would come back to a project shocked at the stupid mistakes I had made. It looked like a totally different person had started working on the thing. It even felt like a totally different person had been there too, because with massive sleep deprivation, many times I can’t remember much of what I was doing during those times with no sleep. Over time I’ve learned when not to try or to keep grinding away at something because I can’t be productive. That is hard to admit to one’s inner self and retain self respect and dignity.

I’ve tried every available form of pain meds and muscle relaxers, they do nothing to help me. Those alter the mind, but whatever is wrong with me, it is physical in nature.

I’ve ridden a bicycle home with broken bones on more than one occasion, before and after my broken neck and back. Before I was hurt, I’ve ridden double centuries at over 200 miles in a day, averaged 400 miles a week on a bike, and commuted full time including cold nights in the winter rain when a simple phone call, train ticket, or bus could have been taken instead of riding 33 miles home from work in the dark. I had a car, but never drove. That speaks to my true character and inner pain perception.

No one has even been able to say what specifically is wrong with me, despite being in the greater Los Angeles area, and seeing every reputable and some not so reputable specialists and neurosurgeons in the area.

Overall, as time passes, I turn more inward and less willing to subject myself to days of useless pain, leading to less physicality, further atrophy, and degrading. Without any human connections or a partner to share life with, it is hard to feel stable. Without a means of stable independence, I have no way to try and bridge into any kind of social normalcy. There is more to that due to my family’s religious cult like extremist nature, but fighting that is a direct path to homelessness. My being (implied) atheist is barely tolerable for them. They are not reasonable and lack fundamental logic skills.