How Can I Do Karate?

Last Tuesday I made it to the dojo for the first time in two long, miserable months! I was excited and terrified. No one around me seemed particularly surprised to see me there, and no one seemed to notice (until I opened my trap about it) that I was on hyper-alert. I was afraid of dislocating, passing out, or having my blood pressure plummet. For the start of the class I had fluids running and was parked on the bench until I could no longer sit up. Then I sat on the floor, propped up in the corner. Eventually the spasms got to be too hard to stifle, and I lay down on the floor, continuing to work in the air. For the end of the class, while we practiced kata in small groups, because I was able to take care of myself, I finished the class on my feet, leading Seiyunchin kata. I felt like a million bucks, and if anyone was fighting that day like H-E-Double-Hockey-Sticks, it was this guy. Nobody hassled me, nobody even looked, except to see that I was okay whenever I cried out in pain. Nobody thought it was unusual, or was distracted. After class was over, I got a couple of "Nice to see you"s and that was that.

EDS makes a person self-conscious. EDS does not have to make a person self-conscious. EDS does not deserve to make me self-conscious, because I am a Titan. Better still, I am a karateka. One is fictional, and one is not.

My blood pressure has been crashing to scary-low numbers, so I have been eating bouillon cubes to keep my blood pressure up. Chicken bouillon cubes. Normally I just drink the broth, delicious and sensible. But broth means volume, and volume means vomit. So, while my guts aren't Barfatron Central, I don't want to do anything to rock the boat and start the gastric spin cycle over again. My aid has been working with me to organize small meals that are what the medical field calls "nutrient-dense," but foods that are low-volume and easy to keep down. The easy solution seems like one would write a list of foods that stay down, and work from that. While that's a sound start, gastroparesis doesn't work that way; at times it doesn't matter what your intake, your output will always come out in the wrong direction, and you'll just have to have a little mercy for the fact that biology still has many mysteries.

My friend asked me, "How can you do karate with your health?" First I came up with a very fancy, clinical answer, then I came to my senses:

It's quite incredible, really. I have strict rules with my Sensei about every little thing: where is the best place to keep water and medical supplies, where to stand in front so I can lipread, how long to bow out for care and recovery. I only work with black belts, as they have the best control over their flying limbs. I keep my promise to take a break when I honestly need to. If I need to drop to my knees and finish a drill that way, or on my back, I can. As long as I keep doing whatever I can do, I get to play the reindeer games. :) When my legs don't work and everyone's kicking, I do punches that are similar to the kicks. Usually I'll do a few rounds of each drill as best I can, and then adapt when I know I'd peter out if I were to continue. Certain things are off limits, like being dragged around by my head, or certain conditioning that is deliberately intended to damage nerves. If it's not something I can adapt I just politely bow out and people reshuffle. I have a hiking backpack that I can secure well to my back while I'm exercising if need be, as well. Sometimes I'll do that, sometimes I'll just crawl to the floor next to the bench, put my feet up to push blood back to my brain, and work with my arms.

You know what? The real answer to your question isn't what I just wrote. The real answer to your question is that everybody supports me and adapts with me. Not even once have I been given a hard time for not being able to keep up. I have asked myself a thousand times whether I really deserve the belt I have. The answer is that I do, and I don't know anybody who would be able to perform like I do if they had my challenges. It's because of my dojo, that's how I am able to do karate.

His response:

I love both your answers to my question - particularly the second. "Everybody supports me and adapts with me" pretty much sums up the ideal society, whether it's a dojo or a nation. In a culture that reifies "individualism", it's great to know the community still has a place. And frankly, I think this is good advice for anyone: "Nobody drags me around by my head".

I also love your blog. More precisely, I love your love. It makes your life rich and full, and makes people like me want to be your friend.

That's a pal.


This morning I missed karate because of exhaustion and pain. But sleeping until 2pm seems to have given me a little energy to care for myself, and to refresh my brain. I'm not going to miss karate forever, and I'm starting to forgive myself for the absence, because every move I make is aimed at getting me back there, while doing good works in the meantime. I'm working on projects and learning new skills, which is working for me. Additionally, although I'm not ready to do drills, I still do juunbi undo (warm-ups), read Higaonna-Sensei's books, and study my kata. Today the class was not to be. Tuesday I'll try again. Twice a week is the target, but once a week may have to do for now.

Karate is not something you study on your own, you need a community. My Sensei has given me a worldwide community to learn with and connect with, including some people like me! My dojo is right here in my neighbourhood, and my community at large is just a few keystrokes away. This is good for me, and I'll keep at it, looking forward to returning as soon as possible.

Be well.

Back In Action!

Since I started karate in 2012 this month is the longest I've gone without attending class. The meds have been too heavy and I have been too sedated to do anything satisfying, let alone the most satisfying thing in my world. I've kept up with my studies, practiced my kata, and made every effort to navigate the medical mess of Ehlers-Danlos Syndrome.

It's been seven years since I began refluxing everything that I ate or drank. I'll spare the details, but it's been a long road. I'm finally getting some answers, or at least a working diagnosis, which is better than having them throw handfuls of pills at me in ill-conceived, but well-intended, attempts at controlling the emesis.

When I read my own descriptions of what I'm going through this sound awfully severe. I've learned to get through it without really noticing, which probably makes it more tolerable. However, in karate we are challenged to face what is hard for us and to gain control of the situation. On some level, it is important that I stay aware and reflect on how my body is changing so that I may take good care of it.Tonight was the first night I got back to the dojo! It was very exciting, I get like a little kid! Karate is the thing to which I most look forward, and some people don't look forward to anything as much as I look forward to karate. I let myself appreciate it with every possible ounce of joy that I am capable of feeling.

My goal tonight was to get through warm-ups. Strategically, I had plans to manage my participation by restricting it to half of what I was asked to do. Imagine my delight when I figured out that a month off from karate has given several joints time to heal, increasing my performance! I did rest, but I also pushed myself. I feel great about it!

It's hard to know when to push and when to rest. There are so many benefits to be gained from both, and just enough danger in too much of either to keep me circumspect. This was a constant problem in physiotherapy. At some point my physiotherapist intimated that she had stopped trying to guess what was wrong, and jumped straight into helping me recover. That little bit of information has been quite useful, in that, I am finally using less brainpower to find the source of problems, and allocating that headspace to resolve, recover, and adapt.

One might consider me a highly sensitive person. As such, it can be so overwhelming go through my body's changes that I somehow detach from having feelings about it, just so I can get through it. That may not be a bad thing, because much of it is a sense of loss about which I can do nothing but grieve. Maybe grief will be useful later, but I don't see it helping me right now. Hopefully it won't creep up on me!

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.