Now This One

Now and then, Sensei will give an unbelievable number of reps to do of some one drill. It's better for my mind than my body, though both benefit. "You don't count, or you'll be tired in a minute," he says. "I'll tell you when to stop. You just think about the one you're doing. You just think, 'now this one, now this one, now this one, now this one....'"

At the same time, I need to be aware of my energy level, the count of dislocations on each joint so I know what exercises to skip, my hydration level, puke risk, cervical spine stability, and a few other things. These details make it hard to focus on anything at all, let alone just one at a time.

This is my first day out of bed after...9ish (?) days of being so sick that all I could do was sleep. I lost count after three days, it was impossible to know. Somewhere late in the mix I managed to pull off a full exercise circuit of Juunbi Undo (Karate warm-up), physiotherapy, extra isometrics, and a little Arnis practice. If I was able to do that after having been asleep for that long, it means physiotherapy is working!

I was thrilled to discover what my very weak and exhausted body could still do! One might say it was just warming up  and gentle PT, but that's a tremendous accomplishment for an EDSer. After being in bed that long, it's nearly impossible to hold one's own head up because it has simply become too unstable from muscle hypotonia. The intracranial pressure was so incredible I thought about going in for emergency decompression. But I don't have full Chiari-I Malformation yet, so I don't want to do anything that could shift my cerebellum. I'm getting better now, it doesn't hurt to think about light anymore. 

Not unexpectedly, I did end up needing my neck brace for the remainder of the day and heavy-hitting pain meds, but today was more or less a "normal" EDS excruciating pain day! My back and hips hurt so badly that it's still hard to breathe, which is tiring, but I still managed to get in a total of twenty minutes of exercise and karate practice. It took me all day but I didn't give up. I just quit when I knew I wouldn't be able to walk, ha! No problem, fair enough. 

I'm beside myself with excitement about this. It means my endurance, tolerance, and my resistance to pain, are all improving. It also means that I'm getting better at pacing myself and maximizing what's working well, while protecting what is not. These are all things I've been working hard to get better at handling. I'm coming toward the end of my second round of intensive physiotherapy and occupational therapy at home, trying to increase my daily function, which is a whole other beast.

Trying to function in the dojo for an hour or two is one thing. It's got a set beginning and end time, everything is padded, there's water, barf meds and IV fluids within reach, I'm supervised, and have no responsibilities except to be safe and have fun.  It is impossible for me to keep up with life's demands on my own, but I don't qualify to get any help because I refuse to stop working, as that would drop me to a guaranteed life miles below the poverty level. I grew up below the poverty level, so I know what it's like to live on other people's garbage, have to steal from the food bank, and wear dead people's clothes. Not cool. Very possible in the gluttony of America, but, no thank you.

So I just make do, and try to run a tight ship on my schedule. Medical demands drive the boat. Then professional, personal, interpersonal, and then desires. I seldom get to the last one, which I'd like to change, because having desires is really a part of personal needs. If we learn not to aim for anything, we have no reason to keep moving. There's not much use for a ship that's just floating on the water. So I'm interested in setting some goals this year, which has me afraid.

Goals have seldom gone well for me. Sometimes my only goal is to keep up with my bowel and bladder schedule by keeping my guts moving my delicious cooking in the right direction so I can get through a work day. College took a decade. Getting my wheelchair took three years. After seven years of fighting for the right to marry, my ex-wife cheated and left.  After 25 years of unilateral deafness I wonder if my brain will ever learn to adapt to Cognitive Auditory Processing Disorder, so I can make sense of the extra noise that hearing reconstruction surgery has given me; five years into it, no dice. These enormous delays are consistent with my childhood, where I seldom even knew where I would be living the next day. I had moved 19 times by the time I was 18 years old. Nothing was consistent, I never finished a solid educational track, never got satisfying grades, never knew when I'd see my family or friends again, and all sorts of other problems. Med school didn't work out thanks to tumors and the onset of dysautonomia.

In short, I've learned through conditioning not to want things. But I've also learned that if I truly want something, I will have to give up an unusually large amount of time and effort to get it, compared to other people, and that I cannot expect to keep it. That's not a belief I think everyone should believe as a truism, it's just the picture that my own walk of life happens to paint. Perhaps that's why, in karate, I'm astounded when I level up on a schedule relatively comparative to my fellow karateka. Karate is the first thing in my life that has ever been stable, consistent, supportive, healthy, and exciting, all in one amazing grace of a package. It's not that other people don't have to work hard, but for some reason I just never manage to keep up. My EDS diagnosis and the first few years of adaptations cleared up a lot of the despair as to why that was. Working with a counselor helped me clear up the rest, all that stuff about having grown up in a rough way with no coping or social skills.

Generous people say I'm awesome, but you can rest assured that it's because a LOT of people have helped me get through this life. It took a village, and if there hadn't been one, I wouldn't be here at all, let alone where I am. I did the work, but countless people helped. While I'm grateful and humbled, that does overshadow my sense of independence. Is why I'm such a stickler for community outreach--it saved my life.

Now it's my first year as a single adult,  and I have made the decision that life goes on. Great, bravo. But that's not a high enough bar. I've lived over a full decade longer than I had expected to survive, and against staggering odds. I've touched thousands of lives and maybe even helped save a couple of dozen. I'm a tough cookie and one cool motherfucker. But what am I working toward for myself?  Enough of this "you're a survivor" stuff. Well, that's great. You know what? Surviving sucks. 

Living would be nicer, from what I've heard. The future is so shaky that anxiety lops off 15% of my daily energy--too big a chunk. If I had ANY confidence that I could expect to reach a goal on relatively the same schedule as most people, and not lose the bounty, today I might not feel too exhausted to even start. But if I had just one goal, I would make a plan. I would design a set of strategies and hypotheses with the scientific method, and then just try them out: now this one, now this one, now this one....

This entire entry could be summarized simply: of course I'm brave, but I still get scared.

It's probably fine. I like the person I've become, and that is the most impressive thing--a gift as much as an achievement.

Be well.