Sunday, April 19, 2015

Oh My Gasshuku!

Susquehanna Martial Arts Symposium 2015 was wonderful, an irreversible, transformative weekend for me as a disabilities advocate and as a martial artist. I am so, so grateful. I've also had a great deal of much needed fun!

Arrangements were made so I could stay in the dorm with a most gracious hostess of the same rank. Bring able to stay on campus at Susquehanna University where the event was held made it as easy as it could be.

I brought 10 syringes for med injections and not one of them was a Luer Lock, so I couldn't screw them onto my port cap to inject meds.  In the future that's got to be my #1 priority.

I had some conversations this weekend about developing as a martial artist with multiple disabilities. I learned the following: I'm not taking it seriously enough; one cannot take it seriously enough; I take most things too seriously. My point: this is going to be an even bigger process than I thought. However, IOGKF is disability-friendly, and many even seem interested in learning how far the style can go to be adapted to everybody's needs regardless of ability.

My Sensei has taught me so well that I was able to keep up, relax, and enjoy myself. That's a very big deal. I keep finding myself wanting to look over and say, "Did you see that, Sensei?" he probably did, but he doesn't have to, because he knows. That's awesome.

The week prior to the event I was in the hospital with gastroparesis and a blood pressure of 66/40.  To put it in perspective, when you hit 70/50 Hospice starts making arrangements to keep you comfortable on your way to wherever we all go.  But I'd waited for this event!  My heart was in it, and so many people have put effort into helping me grow that I thought, if I'm going to fight like hell in the hospital, I'm going to celebrate the life I'm working so hard to live!  So I went.  I schlepped my wheelchair, crutches, braces, splints, creams, meds, potions, lotions, emergency paperwork, IV fluids, stabbin' supplies, and an indefatigable attitude.

It's important not to think of myself as less-than, or as a pain in the neck, for being sick, and wanting to live a full life.  That's not my best asset because of the way I grew up.  The night before the event I asked Sensei, "Are you sure it's okay for me to attend this weekend?"  With a gently irritated, measured tone, Sensei asked, "Why would it not be okay for you to go this weekend?"  I didn't go any further with how I worry about ruining someone's day if I get hurt; or about how disappointed I'd be in myself if I got all the way there and then was too tired or weak to participate; pr how badly I would feel if I interrupted the entire training by dislocating a joint and crying out, freaking everyone out, etc. (that last one happened).

Instead, I took his tone to explain that if I want to get anywhere, I cannot be apologetic for my challenges.  I can be modest, grateful, and realistic, but not ashamed.  It's a terrible and crucial lesson for all of us to learn, regardless of ability.

The best feedback I received was about the use of my wheelchair during training.  I stand in front so I can read the instructors' lips, and that makes me very nervous.  I'm used to being in front to hear, no problem.  But in karate, rank and file trump most other things.  I didn't want my wheelchair in the way if I wasn't in it because I was in the front and already out of order.  The last thing I wanted was for every surrounding black belt to have to dance around it.  It was suggested that, by having my wheelchair off to the side, I made more of a disturbance, because I had to walk into and out of the training space to get seated or get up.  Particularly frustrating was my extra long IV tubing, which often got caught in my wheels.  I was afraid the entire time that I'd nick the line, not know it, and leak IV fluid and blood all over the floor.  Nevermind the fear of exsanguinating with an already-low blood pressure.  There's always at least one medical professional on the floor at gasshuku, which is a big relief, even though they're off the clock.

All this, just to practice karate.

Thanks to everyone who helped me get through the weekend and maximize my learning, I came home with two whopping pages of notes!  I'm a succinct notetaker, so that's a lot of notes.  I've added it to my arsenal of information and it's a trophy in its own way!

Recently, I learned that, in addition to my ossiculoplasty (ear bone implant), my tympanoplasty (ear drum graft) has also officially failed.  The ossiculoplasty has slid out of place and the graft has dried and shriveled up.  That explains the Cognitive Auditory Processing Disorder, which is making it harder and harder to hear.  At this event, I introduced myself as "deaf" instead of "hard of hearing." 

I've spent my whole life trying to maximize the hearing part of my existence, again because of the way I grew up.  But there are perfectly good adaptations in place that support the deaf part of me!  I've moonlighted since my teens to learn sign language, learn to lipread, learn to listen to tones and interpret phonics at jet-engine speeds.  I sign lowly into my lap or into my hip to compensate for my loss of auditory memory, just little notes to myself.

Saying, "I'm deaf" gets me the exact results I need: People face me, they enunciate, slow down, and thanks be to God, they don't scream!  They just keep their heads steady and speak with measured intonation.  I'm at least half-deaf, more like 65%.  So, I think it's fine to use the word.  Deaf (capital-D Deaf) people tend to use ASL as their first language, and interact primarily with other Deaf people on a daily basis.  Most of my own world is hearing, which makes it complicated.  It appears that "hard of hearing" (HoH) does mean to hearing people what it means to HoH people.  Needless to say, being confident enough to say, "I'm deaf" makes the whole process of communication easier for everybody!  I wish I'd known sooner!

A good benefit of having people understand that I can't hear them is that they sometimes stop speaking altogether.  When learning a new technique I cannot focus on the audio and visual at the same time.  Doing it silently, then talking about it, helps immensely!  Back at my dojo, the Sensei have taken to saying, "Now watch me," which cues me to turn and get to where I can see the demo or lipread.  It's amped up my progress considerably.  I have far less fear about not hearing being deaf than I had a year ago, which is the most transformative bit, among so many others, from Susquehanna Gasshuku 2015.

Many thanks to everyone who put time and effort into helping me have a wonderful time!  Arigatou gozaimashita.  I will continue to study everything I have learned about myself and about karate, with great respect and gratitude.

Today would have been my Papa's zillionth birthday.  He would have liked the idea of me learning karate.  Tandi manu diu li benedici, Papa.  Many hands, God bless them.