Saturday, January 31, 2015

The Right Side of the Dojo

Karate prep: Townsend Rebel Reliever leg splint to keep my lower leg in place. Shoulder sling and finger splints on the same side.  The enemy isn't going to ask if I'm okay, so it's time to train and find new strengths. KIAI!

I made it through half of karate class, but it was a very intense time using only the right side of my body! It gave new a chance to learn what I could do in different ways.

We started off with drills. Punching, I worked hardest on pulling my punch back to chamber, knowing that such a move could be used to jab the ribs of the person behind me, or to escape a hold, as is done in Seiyunchin bunkai.

Practicing blocks was the most interesting thing, because when we're doing a drill with both hands I don't think about the hand that's returning to chamber as much as I think about the front hand and its major movement. Having just one hand, I paid much more attention to the directions of its movement; the way in which my hand was facing; and what it was blocking, or leaving open. 

Working in pairs was fun because I had to get creative with bilateral blocks. If the punch was right-to-right handed I did the traditional block. Right-to-left, inside block.

When I got home I had some oatmeal, then I rested on the couch as is my Saturday ritual after karate. I slept for six hours, which was not part of the plan. I should have noticed this when I was too tired to set an alarm, because I slept right through the time to take my afternoon meds.

Ehlers-Danlos Syndrome is a lot to manage. I don't blame anyone who struggles with it so much that they don't do much else, but I do wish everyone could find a way to get a little exercise into their routine, or something they can look forward to doing with their bodies. 

It felt like the other people in the dojo were watching to see how I did things. Their faces said different things: I don't know how you do it; I would never do all that just to come to class; If they can do it, I can do it; I guess I have no excuse not to be here. These are things people say to me, so I know that this is what people are thinking. I'm not supernatural, and I have no intention of inspiring able-bodied people to go beyond what is reasonable for themselves. Able-bodied people are not used to being in crushing pain 24x7; if they had had the injuries I dealt with today, they might have rightly stayed home, for hope of healing. 

Much to my comfort, nobody said I was a distraction or that I should have stayed home. I would rather get a thumbs-up for splinting correctly and showing up than a pitiful face for being in splints. I'm always worried about hearing that I should have stayed home, or that I'm bringing everybody down, because that's how my family has reacted in the past. They seldom do anymore, but it's a doubt that I carry. At the dojo, however, people expect to see me in whatever I come with that day, ready to learn. We are all working through some challenge in this lifetime, and I'm glad that we all spend a few days a week going through it together. I can let my guard down; nobody is going to tell me I should have stayed home because I have EDS or because I can't hear.

My hearing seems to be failing further, that's bothersome. My hearing aid causes piercing pain.  My ear bone implant causes extreme pain and I want it taken out.  I'm not sure I understand how to let go and go back to deaf when all my friends are hearing; I am afraid that my hearing loss will be much worse now because I've had several years with Cognitive Auditory Processing Disorder to scramble up what is left of the hearing in my "good" ear.

I have more to say but my shoulder is killing me, even though I haven't even used it today. I'm confounded by this. I'm also totally wiped out. I slept all afternoon and will still sleep through the night if I can keep the pain under control. This day is still a success because I learned a new thing. 

Monday, January 12, 2015

What It's Really Like to be Karateka With Disabilities

I'm writing this entry to invite able-bodied, neurotypical karateka into my world. My goal is to help improve upon the understanding of all the "inspirational" videos of people with disabilities performing as martial artists, under the impression of "NO EXCUSES" being the reason we do it, when really we all have our own motivations, no matter our level of physical, intellectual, or emotional function.

These are some of the thoughts that go through my head when I'm sick. It's been three weeks:

My body wants to turn inside out. I just know it. Nowhere doesn't hurt. Even my eyelids hurt. Why? No idea. Just hurts and feels gross. Anxious about teaching tomorrow. Trying to sleep it off isn't working. No way out today, just gotta go through. :( Lonely sad anxious sucks sucks sucks. Wish my PT were here to help me.

Oh..uh..Hello, Mr. injection. I didn't see you there among the other vials. How long has it been? *fail*

Bending fingers backward beyond reason is both a violent self-defense skill and a medical diagnostic test for Ehlers-Danlos Syndrome, the Beighton Score.

Meds for the muscles. Cream for the skin. Vials for the barf. Fluids for the brain. Sometimes I think it's all potions and snake oil, until I stop taking it or don't have it when I need it!

It's not even pain, exactly. I can't explain it but I need it to stop. It just feels like maybe a hyperbaric chamber might help? Like my muscles want to crawl away from my bones. All kinds of terrible visualizations come to mind but none quite explain how bad it feels. I've got everything I need except relief. I'll be so happy to be on the other side of this! If I could, I'd stuff myself into a crockpot and set it on low to let these muscles melt away from their fascia and bones. (Whoa, that's heavy.)

Work would have started 17 minutes ago. Not today. Nope nope nope.

Well, bowel and bladder training are paying off. Thank God for small favours. 

Well, I guess the benefit of being sick and not wanting to eat is that I met my weight loss goal 6 weeks early.... Just oats, salsa and broth, mainly. My weight will soar when I start eating solid food again. EDS suuuucks. But I'll be okay!

My bed has seen too much of me. But I'm afraid to go out alone for fear I'll be too exhausted to drive home. I'm afraid to do much of anything because I'm so shaky, even PT. This is a time to be mindful, to know it'll get better, and to practice calmness. NOT MY FORTÉ!


I'm grasping at humour to keep things positive; reaching out to anyone who will send an encouraging word, which I seem to need above my own voice at times like this; relying on meditative and faith-based techniques that work for me when time are better, and remembering that this is only temporary.

I've been doing 100 Mawashi geri  (roundhouse kicks) a day until I get to 2015, which keeps me oriented toward getting better so I can participate in karate as fully as possible.

Higaonna-Sensei suffered an aortic dissection, and survived! Many pepe with Ehlers-Danlos Syndrome die of aortic dissection, and there have been deaths in my family from aortic aneurysms, so it has frightened and upset me a great deal. I've never been one to worry about death, but I'm shaken up by the idea that other people can survive aortic dissection. I don't know enough about it to process the whole thing, really.

I'm praying for Higaonna-Sensei's recovery, which I know will be slow and difficult. I wish I could be beside him in Okinawa to tell him he is amazing, inspirational, and that I feel for him.

When I'm sick, I'm stuck alone in bed with just my own mind. It can get like a bad neighbourhood, not a place I want to hang out by myself. So I need to reach out. Other people may not, but it helps me. I'm a social being, whether I like it or not, and even though it drains me I need to put myself around people. Sometimes I don't even have it in me to invite somebody over, and that's one of the roughest spots to be in. When I have home health care it's easier because the appointments are set up ahead of time.

It makes a very big difference when someone comes to my house and works with me on my body's needs for that day. It increases my chances of being able to do something independently later. Today, I couldn't even fix a bowl of Cheerios, and I'm not hungry, anyway. But after working with my PT I'm usually upright and ready to eat. She always offers to help me fix something to eat, but by the time she's done working with me I feel ready to do it myself.

This is the part of my life that I'm terrified of, being reliant on other people for help with Activities of Daily Living (ADLs). Needing basic help with ADLs is incompatible with my other life activities like working full-time and practicing karate. It seems like if I'm able to do one, I should be able to do the others, but it's not always the case. Maybe I can work on that right here, right now:

It makes sense that I can sit and teach a class on some technology that I already know well, but can't get upstairs to heat my lunch. But to practice karate is hugely physical, so why is it so much easier?

1. In karate there's no equipment to drag out, or to wash and put away.
2. It's easy to dress for karate.
3. I get ample time to warm up.
4. The space is flat and I have immediate access to my medical supplies.
5. Almost everyone in my dojo is trained in first aid, and everyone knows about my EDS and Dysautonomia. Better still, they aren't afraid of it.
6. The dojo is a therapeutic environment which fulfills my need to interact socially.
7. I can take all the breaks I need.

That looks like a good list, and helps me understand why I'm able to drag myself to karate when I can't even bring myself to eat. ...Right?


The picture attached to this post, which says, "Zebra Strong," refers to the mascot of Ehlers-Danlos Syndrome, the beautiful and exotic zebra. It's the mascot because there's an old medical school axiom that goes, "when you hear hoof beats, think horses, not zebras." It's teaching future doctors to think of the common things first. But the assertion with EDS is that "zebras exist," meaning that the exotic conditions must also be examined and screened.

I'm a strong zebra, and I'll get through this.

Saturday, January 3, 2015

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.