Wednesday, November 21, 2012


Through discipline, strength and humility
I will strive to bring out the best in myself and others.
I will use common sense before self-defense
and never be abusive or offensive.
I will strive to have patience, kindness, gentleness and self-control.

Everyone says this meditation together after practice.  From my spot at the end of the line where everyone begins I have a clear view of my fellow students, all in a row, perfectly parallel to one another.  Sweaty and satisfied, the moment is peaceful.  No one is sore yet, we are all out of breath.  None of us is in a rush to move on to the rest of the evening--we have not been dismissed yet.  The feeling is connected and good.

My muscles are telling me that I've done a great job, and they're thankful to have been activated.  My joints have little to say on the matter, but I have done my best to protect them, minding my range of motion and stopping when necessary.  My head is clear and I am still hydrated because I took lots of breaks to make sure such was the case.

Sensei had us go back and forth across the dojo practicing different drills.  He worked us hard because the Thanksgiving holiday imposed a long weekend on the class's routine.  By the end of class I could feel the sweat dripping from my hair to my shoulders: it's raining me!, I thought.  A fellow student stayed late and taught me the three basic blocks.  I taught her the physiology of muscle activation, lactic acid, and the Krebs cycle; and about the golgi tendon organ's involvement in stretch reflex.  Fair trade, I think.  The social interaction was fun, and I enjoyed sharing my world with someone else, who in turn shared theirs with me.

Hearing impairment brings with physical activity a whole extra sense of urgency to keep up with the class.  I can't hear what's going on, and suddenly everyone is moving into a formation that I don't understand.  Reading lips is hard enough when a person is right in front of me.  I simply haven't figured out how to read in the mirror while watching the demonstration at the same time.  Then, in zero time, I have to process what I've heard, convert it into my own sense of what to do with my body--and by the time I get to this point I've lost 90% of what was said.  But I'm here to have fun, and it's fun!  I laugh, ask for help, smile, and have a good time.  Something inside me knows I won't be left behind for any reason.  That's everything to me, meaningful, more important than hearing and parroting.

I'm tired, happy, throbbing, wound up, and grinning from ear to ear.  This is going to ache for days, but it will be healthy muscle pain and not joint pain.  This is real accomplishment, and I've missed real accomplishment.

Be well.

Monday, November 19, 2012

Day One: Hello, Dojo

Tonight was my first karate course. For five years I have grieved my daily running regimen, suffering everything from an occasional wince to a full blown nervous breakdown, time and time again. It has been a medical nightmare. Since I first discovered that I could interact with my own body just four months before diagnosis, I have longed to own it, shape it, make it look like me, make it feel like it was mine.

I'm super sore but my head is in a happy place. It was a scary hour and a half, but I felt safe and looked after.

Sensei is an incredible soul with whom I connected immediately. I simply cannot imagine myself under another instructor. What he has overcome resonates within the frequencies of my own outcry for a sense of connectedness with the world around me. I cannot tell now whether I will even be able to grow as a pupil, but I wish to know him forever. Anyone who transforms colossal pain into leadership and education is a remarkable person. That includes me. So I'll do my best work what I have learned from my PT, listen to my sweet wife when she tells me to rest, and challenge myself to be healthy as much as possible.

I finally feel a shift in my attitude, a turn of my disposition away from work and toward a healthier me. I have no idea what to expect of my pain level in the morning, but it will be of my own will for a change!  For years I have not waited, but actively sought, a place where I felt like I could safely grow into what I now know of myself, where I could safely learn to interact, and where I would be in the company of people who will not shy away from danger.  I think the people at this dojo have understood danger, and have understood a dream deferred.

Another mention: the students!  It's as though I had walked into a garden of hope, where the acceptance by them led me to accept myself.  It's hard to look in the mirror and see what has happened--what I have let happen to my body--over time, as I have struggled to stay alive.  When I get sick again, I will be in the same gauntlet where I cannot care for myself, cannot feed myself, and cannot manage my day-to-day life.  But if I can plant my energy in this soil where the other students have moved over to make room in the bed, I will be a stronger flower with stronger leaves when the winter comes.  I use this metaphor because a garden is a welcoming place, and every student made it a point to say hello.

Yes, this is a healthy way to spend my time.  Surely I will get hurt a lot, but I get hurt a lot anyway.  At least I have something to do with my body, other than hate it, which is not useful.

The biggest challenge will be my fear of moving.  I don't know whether that's because of the way I grew up, or because of EDS.  Maybe half-and-half.  It is so important to do this work in a safe environment, where I am completely removed from all distractions, and under the expectations of effort and commitment.  On the flip side, I also need to heed my PT's advice, and rest.  So far, I'm doing a good job of that.  Speaking of which, off to bed.

Be well.

Friday, November 16, 2012

First Contact

After he witnessed a violent, hate-based attack on his partner, my friend started studying karate.  Almost immediately after beginning karate my friend transformed entirely into someone with more confidence, a greater sense of self, even more humble and collected than he already was. 

A couple of years ago my friend invited me to visit and attend a free self-defense seminar where he practices.  The day before the class we had a talk about what the risks were of becoming re-traumatized by memories of past violence, how I would take care of myself if I got stuck in that head-space, and who in the dojo would be able to help me through in case it became too difficult for me to take on by myself.

The biggest complication of the seminar was finding ways to adapt the moves to my disability, so that I didn't injure myself further while trying to defend myself.  I came out of that day with a new sense of self, impressed with what my body could do when it had a little guidance and adaptation.  As someone with a disability, being a clear target is always in the back of my mind when I am noticeably limping in the city, or using my wheelchair.  This course made me feel like my body is worth fighting for.  It was the first physical thing I had done since my diagnosis a few years earlier.

Fast-forward to present day.  It's taken me two years to find a karate dojo that I could feel comfortable joining, with a sensei who would be able to handle teaching a student with multiple disabilities--namely Ehlers-Danlos Syndrome (EDS) and unilateral deafness.  The first encounter went like this:

   Scene: Grocery store salad bar. 7pm Friday night.  A man wearing a sweatshirt with a karate logo fixes his    supper.
   Me: Excuse me, I noticed your sweatshirt, are you a teacher?
   Sensei: Yes, I am.
   Me: All my joints dislocate.  Will you teach me anyway?
   Sensei: Come in tomorrow at 8am.

His face was stunned when I showed up, but he had a grin on his face that told me he understood my green enthusiasm.  I stayed at the dojo all morning, evaluating my health, background, goals, challenges, commitments, support.  I watched students practice and scrutinized my own body, wondering if I would really be able to keep my joints from spiraling out of control, and if I would be able to accommodate in case the answer was no.

The paperwork asked if I was willing to commit to six months of my best possible health (paraphrased).  I wrote several sheets of notes down first, to make sure I could honestly check the box marked YES.  The notes said what my challenges and strengths were, and how I would get through the complications of EDS.

If you've ever explained EDS to someone you've seen their eyes glaze over with judgment of some sort, somewhere between you poor thing! and okay, wacko. 

 A made-for-daytime-TV moment:
   Office manager: We need to be sure that you will be able to keep yourself from getting hurt, dislocating joints or passing out.
   Me: If I could do that, we wouldn't be having this conversation.  Those things are all going to happen, and probably often at times.  The question is whether or not you're willing to stick with me, help me through, and continue teaching me when it does.  This is my choice, I'm only getting sicker, so I would like to do this.

Another tear-jerker:
Sensei: Some of us have disabilities that are clearly visible.  For some of us, if what was in our hearts were visible, we would be just as disabled.

Another hour passed by as I helped with Japanese language work and offering to transliterate the students' names.  After one more round of observation and scrutiny I made my way home, eager to share my discoveries with my incredibly supportive wife.  I was thrilled, and she was thrilled.

The most important lesson from this day is that I astonished myself.  As I explained my situation I noticed that I have come a long way.  I can talk about where I come from without collapsing; physiology is everyday language and knowledge for me; my approach to self-advocacy draws courage out from others who are afraid to engage the world of disability.

So ends the first visit.

Be well.