Saifa Kata and the Clavicle Strikes

I'm relearning to perform Saifa kata at full speed and power without dislocating my clavicles. It's funny that one of the Saifa bunkai is a clavicle, too.

PT and I think it was fine when my port was anchored to my chest but now that it's out and there are all these pockets cut into the muscles they aren't holding my clavicles in place anymore. It's not supposed to be the muscles' job to stabilize the clavicles, but in lieu of connective tissue to do the job, the muscles aren't really capable of doing both while also full of pockets. So, strengthening and toning. It'll sort out. Saifa was my best kata for a while so I'm eager to get it back as best I can.

In Defense of Self

Karate is about self-defense. Period. It's not a sport.

I've convinced myself that the grief process for how far I've slid in the past two years won't be as severe, so long as I can keep on partying with aggressive dance moves in my funny pajamas. For most of the last ten days I've had intractable pain. I can't wait to get back to karate in any possible way besides reviewing in my head. I need to believe I'll get back to it because without my port I've been at a tremendous loss. Karate is a huge part of me that I haven't lost, and I don't intend to.

Retirement due to disability isn't like voluntary retirement at retirement age. For one thing it's guaranteed poverty. It's means-testing for every bit of support. It's nursing and medical re-evals a dozen times a year just to make sure you're really not going to improve. Same questions over and over. Same paperwork. Same signatures, scheduling, hours and hours of life spent on enough  paperwork to make you ask yourself, "can I really not work if I can do all this paperwork?" But then the symptoms stack up, everything you swear you've washed still smells like puke to you, the mail says you're overdue for more medical exams, your best splints won't close over the cat fur in their Velcro, and it's hard to tell what day it is because you can't remember the last time your sleep schedule was diurnal. That's on top of actually staying alive and uninjured, splinted appropriately, meds, physiotherapy, occupational therapy, medical appointments, paperwork for those, blood work, pharmacies, insurance, prescriptions, bills, diagnostic imaging, durable medical equipment, residential mods, vehicle mods....

Suffice to say, I'm having a hard time.

When I'm at karate that falls away for a while. I'm enchanted by the physiology, the safety, the methodology. My Sensei delivers this balance of humour and heft that level off the risk of death or permanent injury similar to the risks I live with day in and day out. Things slow down and I'm not thinking about how close I am to a joint dislocation. I'm just doing one thing at a time and when something pops out I put it back in. Easy peasy.

There's no paperwork, no evaluation. Nobody is going to check to see how functional I am. They're just other people on the floor on their own journeys, and we're just doing the same thing together for a time. We're all pushing our own limits. There's no competition, only partnership. There are no cliques, only karate family. We're a tight-knit dojo and your body or intellectual ability does not limit you in our school. We are inclusive and I am included.

In my school I don't feel invisible. When I can't be on the floor I have extra projects to participate, in character development or in projects that help our school grow. I get to do really cool things with every language I know, with technology, building, and crafting. There's never a break in growth and strengthening, and that's what makes karate invaluable.

Karate is about self-defense. You have to believe in your life and develop a life that's worth defending. You have to build a self to defend. I've lost a tremendous lot of my self in my retirement. Karate is as good a mode as any to get that back or grow a new sense of self. So you see, I'm eager to get back.

Some Nightmares Come True, So Do Some Dreams

Five years ago I was facing cervical fusion, going into shock every other day from venous access, stuck to an IV pole for nine hours a day in a nursing station. I couldn't turn my head without passing out and the diagnostic process for Dysautonomia was cloudy. I underwent testing for Chiari-I Malformation, lived in my cervical collar, and suffered overwhelming amounts of physical and psychological pain 24 hours a day.

I didn't know how much time I had left to go on like this or who could help me, but it tanked my life. It bled my savings and retirement dry.

My (ex-)wife was miserable, I was miserable, I was just a few months away from graduating from college which had taken me ten years to complete. My family was furious and "disgusted" with my IV fluids, not convinced that drinking more water was not working. My work was very compassionate but worried about my ability to perform. My friends were scared. I was scared, and fed up. I could not continue pre-med studies.

Three years ago began refusing treatment and my doctor stood up for me (again) to tell my insurance that this was not working. I got my port 28 June 2012 and things got immediately better. By August I could get my port accessed once a week at the nursing station and run my IV fluids at home, during which time I rested, worked, and did physical therapy to rehabilitate myself. I still could not regulate my body temperature or stay conscious over 65°F.

I started practicing karate on 9 October 2012. That was the day my real life began. I could stay conscious if I ran fluids. By November 2012 I was able to access my port by myself (which saved a lot of money!) and I got an IV pump which allowed me to run IV fluids on the go with a backpack. I still follow sterile procedure like my life depends on it--because it does.

My physiotherapist told me, "While you have time, go live. Because when you're lying in that bed, you're going to want those memories."  I had wanted to practice martial arts all my life. No dojo would work with me because they were afraid of liability. Finally I met my Sensei, who let me try, and we were very careful. The rules were (and are) strict, to ensure my safety and success. Everybody was worried about whether I could do it, and I didn't care. I was on death's door with blood pressure collapses and had lost a hold of my dreams. What if this port thing was my last chance at living?

I wanted martial arts. I wanted EDSers to be able to protect themselves. A martial arts seminar showed me there were things I could learn to do; once I knew there was a dream within my reach I wanted it. I told myself that if I died after that, I would conclude that I had been a useful person in this world. I asked God to just give me this one dream, give me one merciful gift before I fell to ruins. I begged for strength, and my port was just enough to bring strength back to me.

I proved to myself I could do it, and set out to inspire others with EDS to learn what they CAN do. Today my dream came true, thanks to my Sensei, my doctors, and my friends.

Today, on 14 August 2015, I co-taught, beside my Sensei, a session on Self-Defense and Martial Arts with EDS and Dysautonomia. We showed people that everybody could do /something/. 

At first people were nervous about what they couldn't do without dislocating. Sensei dispelled their fear using the same basic techniques that I found so grounding: he started with curling the toes. So small a thing, but so simple. I watched a room full of antsy people wiggling little tiny toes, watching those toes intently, and succeeding. The tiny toes curled down into the floor, curled up, and down. The corners of mouths curled up and stayed up.  If only for a moment, a room full of people with EDS found a physical thing that they /could/ do.

It was like we'd unlocked a treasure chest, and the doubtsstarted coming: what about my ankles? What about my balance? What if I can't stand? What if I can't take my shoes off?

Within minutes, those doubts became wonderings: "How can I do this if my ankles are loose?" "Can I do it this way?" "Will it work if I do this instead?"

I understood for a brief moment that what I had done in pursuing martial arts was larger than just overcoming my Dysautonomia and chronic dehydration. Today I changed the way at least one person perceived their body.

Die when I may, I finally feel like I've made at least one satisfying change in this world, one real act of gratitude for all the kindness that has cushioned me along the ridges of a very, very hard life.

Thank you all for your help along the way, and for helping make my dream a reality. I think I  finally feel brave enough to dream again. Yes, I'm ready now.  Onegaishimasu.

Be well.