"Watch and Learn" is a Thing

"Watch and Learn" is a thing; I'm a hypocrite if I could do that thing, but then don't.

If you have Ehlers-Danlos Syndrome and practice Goju Ryu karate, you'll need to practice adapting. I am a star at adapting, with plenty of life experience. What you do on the floor has to work in the street or it's of no use. Observing gives me an opportunity to watch and think about adaptations without trying to stay conscious and upright.   

For both Monday's and today's appointments I did not get medically cleared by my physiotherapists to attend the once-in-a-lifetime Gasshuku (special karate group training) this weekend. The Gasshuku is with 8th Dan Paul Enfield, and it was the right call: my sacrum won't unlock. If I try to use my lower back I'll be very sorry for it later on. Throwing punches without full access to my hips is causing my clavicles and shoulders to sublux. Kicking with a fibula that won't stay in place unless it's taped, or suri-ashi (body shifting) with an ankle that won't stay in place, is not a good idea. All this, right after finally figuring out a way to reduce the blacking out from Dysautonomia. Any one of those things would be reason enough for any rational human being to sit the heck down.

But this is Paul Enfield, the man who brought all four volumes of Higaonna-Sensei's work to document Goju Ryu karate to the English speaking world. Sensei told me to come and observe, and usually I would be able to do that, and happily. PT suggested the same. But I'm deaf in the dojo, so it would be complicated and stepping into the dojo is already so emotionally charged that I can't imagine being isolated in two ways (movement; hearing). That's an error of thinking, though; I am never separated even when I'm just observing because my dojo family goes out of its way to make sure everyone on the floor is included.

I dread sitting out because I put everything I have into physical therapy to get back to karate. It feels like I'll never be done rehabbing, and it's true that I'll never be done with rehab. PT is a permanent aspect of life with EDS. But rehab without karate feels like I'm fighting just to live, and my quality of life feels pretty low since the third bout of sepsis.  I also miss my port and the freedom to roam whenever and wherever I want to go.

It's hard on the psyche to go to the dojo and not physically participate. Sometimes I have to step out to cry, which is fine, but tends to make others worry. "It's just hard," I tell them. And it is. The pain of knowing my body will work against me if I try to use it is agonizing in itself. It's arguably worse than the physical pain, but because the physical pain affects my overall functional level (like being able to use the bathroom), I have to respect the pecking order of matter over mind. 

It won't be forever. Sensei assured me that there will be plenty more Gasshukus. But my heart is in the dojo and I want to be doing karate. No matter how much I read or review while I'm physically rehabbing, it's no replacement for live practice. Not being able to practice also has a detrimental effect on how much I can learn through studying, too.

What I'm trying to say is that I'm upset when I don't need to be, and if I want to be a hypocrite I should stay home and not find ways to adapt what I'm seeing. And yet, I feel pretty rotten. But even when you feel rotten, you should go to karate.

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.