Physiotherapy-Do

Physiotherapy (PT) has its methods. It takes time and commitment. It takes energy and resources. It's for a better overall sense of being. In that sense it is just like karate-do, another way of being. It's hard to walk both paths at once because my energy is limited, so I've been foregoing karate in order to repair my body at PT with that much more focus and efficacy. When I pushed myself to do both I felt like I was working against myself because I was too sore and exhausted, and I was getting weaker from doing too much. (I do not enjoy admitting this.)

After physiotherapy today I had to sit in the parking lot to collect my emotions. My physical therapist is so knowledgeable, so humble, and so unafraid to try to help, that I get overwhelmed by finally having a place to go where I can get relief. (I get even a little more overwhelmed to think of how few EDSers get this far.)

Thanks to my PT's help, I take less medicine for pain. I am getting through more of a day without needing a major rest period. I'm not throwing up every five minutes. I'm passing out less often, and less severely. I'm able to hold my own head up without a brace more often.

Regular access to competent physiotherapy is helping me get ahead of my pain. He not only helps me understand what's happening, but he challenges me to think through why it is happening. Then, he gives me options for what to do about it, and I am 100% included in my own care plan.

My PT meets me where I am in managing my symptoms. By that, I mean that he genuinely listens to my confusion and frustration, which gives me space to work through the emotions that need care on the way back to logic. It's a holistic approach, invaluable to a "PT lifer" like me.

I look forward to physiotherapy because it's where I go to get better. Today I was anxious because I knew I was going to be able to make it, but I didn't know how much I was going to be able to do since I had been dealing with POTS all morning. I had a "painsplosion" last night, too, which was not helpful. What I did know was that I would be okay, and that I would be in less pain after. I would not be judged as weak and I would not be ridiculed for using dramatic terms to describe my pain because it's so complex a feeling to convey. I knew there would be things to laugh about and that I would have some serious work to sink my teeth into. 

I like working with my PT because he is a natural teacher like I am. He lifts up everyone around him because he is constantly educating. Patient education is essential to long-term results. I leave with lots of ideas to look up each week. I wish I could stay and take more notes during or after sessions, but I really need to focus on my body so I can get back to karate. That means I don't get to spend as much time in my head as I'd like, to process it all. With hearing loss it takes extra time to commit verbal exchanges to memory.

Physiotherapy has been a long road for the last several months. It's taken effort, tears, trust, time, and patience. Not once have I left there feeling like I haven't raised the bar; I am always a little better off than I was when I went in, regardless of where I was when we began our work.

Because I'm able to get this care, in able to stay employed. I'm able to earn a living wage, pay my bills, contribute to the economy, and even make a few modest donations here and there. Ehlers-Danlos Syndrome costs a fortune to manage, even with Employed Individuals with Disabilities Medicaid buy-in to cover my insurance copays. A significant portion of my wages goes into my care. But at least I'm getting adequate care now, which is especially true with having found a qualified and competent provider.

Last year was a rough year for my health. This year I'm going to keep working on improving myself. I will work to remember that I can only do one thing at a time, and I will try not to work against myself.

I'm so grateful that the trend is upward that my eyes are leaking. You could fill a city with the number of people who are a part of my progress. If we could measure compassion in raindrops I'd need an ark!

The foci of our work this time around in PT has been on shoulder stabilization, stabilizing and integrating the paraspinals, improving vestibular resilience, resisting syncope and recovering sooner, and a few other odds and ends.

I am so eager to get back to karate, I must think about it at least 20 hours a day. But I don't want to overdo it and end up injured again because I'm working hard on PT to come back from a really harsh year. Every day that I don't go to karate I have to resist kicking myself. But I'm trying to be patient with myself because I still study and I still practice at home, which has value. My dojo always welcomes me to try everything I think I can do. But I think I'm doing the right thing to let myself recover. It's so hard to not go.

I'm so very grateful. How I wish I could give this experience to others who desperately need better care and better results. Maybe by writing it up, others will know what to expect, and they will know to aim for a higher level of care.

Be well.

On the Balance of Kata, Bunkai, Kumite, and Iri Kumi

The first iri kumi of a martial artist with disabilities is the battle to seek and find a school and instructor who will take them on, without preoccupation for their disability, their ability, and any perceived potential liability.

At the bottom of this post is a list of people of all sorts of cool abilities. I thought about them during this post and think it will enrich this post if you check out the links.

[Image: a river bank in Japan with trees in the foreground and a stone lantern in the background. Colours are different shades of green under a mid-day overcast sun. Text in picture:
"Karate becomes a sport when those who are teaching it forget that it is an art."
-Karate Viewpoints]

A facebook thread of friendly  "chest thumping" got unexpectedly philosophical with questions about who is practicing something martial and who is practicing art.

Loosely defined, here is what the words mean from the title of this blog post:

• Kata - a series of movements commonly referred to as the textbooks of karate
• Bunkai - ways to use movements from the kata in fighting
• Kumite - "grappling hands" 
• Iri kumi - free, controlled exchange of technique, often continuous hard contact

It was said, paraphrased, that those who do not practice iri kumi are not learning to fight, they are learning an art.

For a second, it hurt to think that, if I didn't practice iri kumi I was not practicing the martial part of the art that preoccupies my life. I am used to being told that I am some one way or another, as are most people with disabilities. But the more I thought of other martial artists with disabilities who motivate and challenge me, I became anxious about our inherent right to learn to protect ourselves by any means possible. 

Probably I will spend the rest of my life contemplating the following four questions, on and off again.

1. Where is there room in how martial arts is defined for different people--from within and from without?
2. Are people with disabilities who can't regularly practice iri kumi, then, only practicing an art? Is there room (and there may not seem to be) that it may also give them a fighting chance?
3. Everyone is fighting a battle, and people with disabilities are at constant iri kumi vs. life. But so is everyone else, so how is our existence framed when viewed from the non-martial arts lens?
4. If I didn't have so many projects already I would take time to to look through my materials and see what Higaonna-Sensei has to say directly about kata, bunkai, kumite, and iri kumi. Beliefs grow and develop over time, like it or lump it, but it will be helpful for me to keep looking both back and forward. Any particular points of interest?

I am especially grateful for every person, group, school, and organization that welcomes students of all ability levels.

-=-=-

People I've thought about during this post:

1. My Sensei, who took me on and we made a plan to be safe; who requires that I (we) understand the techniques as they were written for able-bodied majority, and that I (we) find adaptive ways to perform techniques effectively at any functional level: http://www.warriorsofgracekarate.com
2. Higaonna-Sensei, who remarked that it looked like I was having fun; who took time to make suggestions about how he would like to see kata and techniques performed. https://en.wikipedia.org/wiki/Morio_Higaonna
3. The ever-growing number of karateka with disabilities in my dojo, which we all celebrate with joy that we can be such a place where all are welcome.
4. John Marrable-Sensei who paved the way as a Goju Ryu karateka with a visible disability and looks to be absolutely lethal: http://johnmarrable.com/self-defence/
5. Ikkaido Federation http://ikkaido.com/
6. Olando Rivera's Warriors for Autism: http://olandoskickboxing.com/
7. SuperCelu, my hero: https://www.youtube.com/watch?v=q8cygU1x6RM
8. Andrea Harkins, The Martial Arts Woman, who featured my narrative in her first anthology: http://www.themartialartswoman.com/
9. Chris De Wet-Sensei, who helps me face the reality that not all experts will have the answers I need, and that I have a responsibility to find those answers for myself, which will empower me to help others grow: https://www.youtube.com/watch?v=nSNDxjADH1E
10. Michael Downs-Sensei who helps me focus on helping others grow by acknowledging both my disabilities and capabilities: http://defensiveartsdojo.com/
11. Me (here I am! Hi! I did think of myself.)

Higaonna-Sensei's Time

I dreamt that Higaonna-Sensei visited my dojo on my testing day. He looked so healthy, happy, and energetic that I kept my nervousness about testing in front of him under control because staying calm and collected in times of conflict is his #1 lesson.

In my dream I passed to my 2-kyu, but he had much to say about what improvements I needed to make. He gave me a technical analysis of what to modify so that my disabilities weren't in the way of my efficacy. He a gave me strict feedback about where I was clearly getting in my own way for fear of injury or fainting.

How I wish I could remember anything he'd said! We spoke mostly in Japanese and I was preoccupied with translating, and with not getting overwhelmed by how generous he was in his time with me, when there are so many people who would kill for that kind of time with him. The only way I could focus was to know that the only way to honour those people was for me to focus, work extremely hard, and to do everything I knew to make Higaonna-Sensei happy with his student. I received a glut of his time and attention.

---
This has got to be, in part, a manifestation of how I felt during MCF2014 in Tampa, Florida, USA. I'd had a number of difficulties and was driven to tears several times from the complications.

On the first morning of training I had accidentally come to black belt training. I arrived late, so I wheeled to the back and parked my chair against the wall, doing gentle juunbi undo (karate warm-ups) and trying not to draw attention as the karateka in the wheelchair with lights on it. Nakamura-Sensei politely informed me that this was the black belt class and I'd read the schedule wrong, but he invited me to sit and watch, which I did, soon finding myself a fish out of water. I was 5-kyu at the time, a blue belt.

The day before I found myself sitting in the dining room of the hotel at the table next to the senior instructors. Higaonna-Sensei and I faced each other from our respective tables and exchanged informal head bows, with smiles throughout our meals. I knew who he was and now I knew he was curious about who I was. At the time the only other wheelchair user I'd ever heard of was John Marrable-Sensei in New Zealand. I'd only seen Marrable-Sensei in pictures, but I knew he was out there in the big world, and from his representation I gained infinite gusto about representing myself in my wheelchair to break barriers and stigma.

Within seconds of Nakamura-Sensei's invitation Higaonna-Sensei walked up to me, cutting right through the lines, all the way from the front of the class. He did not rush, and his face was neutral. He did not look at other students as he walked, but came straight to me. We bowed. With no delay he held out his hands. They were covered in scars, knobs of arthritic and glycated tissue, and dry patches where I presume blood and water could no longer compete with the chronic assaults on the capillaries that carry nutrients to the surfaces of his hands.

"Whatever you do, do it a hundred times," he said, as he rapidly opened and closed his massive paws into fists. "every day. Then you will be strong. Just one hundred times. Okay, good."

Just as quickly as he came he was gone, back to teaching the black belts.

Later, outside in the Florida sun, we were taking photos with him and with students from our respective countries and I passed out from the heat. A fellow karateka happened to be a paramedic and helped me inside to safety. I collapsed on a patch of floor off to the side of the stairs and he helped me start my IV pump. It became apparent that I had worried Higaonna-Sensei because he came to me when he was through with photos, an entourage behind him, to see if I was recovering okay. When he saw that I was in good hands he gave me two thumbs up and went on with his day.

It isn't easy to be "the one in the wheelchair." It can feel like I'm getting extra attention I don't deserve, and like I'm taking away from other students. Someone's I just have to be humble about it, other times I have to fight for it to get my own needs met. It's important for the instructor to be aware of your needs, especially in matters of safety, but also in matters of equally access.

Higaonna-Sensei teaches so many people that he can't possibly get to know all of us. And yet, he took much time to meet with me, to talk with me, and he even asked Nakamura-Sensei to take a picture of us so I would have one. "You look like you are having fun, I see you smiling when you practice," he said.

How I wish I could see him again. I wish he could see how much stronger I am. I wish he could know all that my Sensei has done for me, how Goju Ryu has changed my life, thanks to his proliferation of the practice.

We only get so much time on this earth. May we all use it to change and improve lives.

Swimming In Zanshin

Higaonna-Sensei says in an interview, "when I get a knee injury, one would normally think, what to do? [...] One should learn to live with it. [...] Stress is a person's biggest enemy."

This is a very hard lesson to get behind, though I understand his point. Learning to live with it is easier when the injury doesn't change and is localized. I suppose if I had one bad knee, with pain that didn't change much in severity, or didn't require an immediate and improvised adaptation to my day, I probably wouldn't get choked up.  This is something to work on.

But Ehlers-Danlos Syndrome does change, and it changes from moment to moment. A lesson that speaks to me more is the concept of Zanshin. This is not a word we shout for a stronger punch. It is not a kata, a level, or a formality at the beginning and end of class. It is not a part of our uniform, or a move, or an application. Zanshin is integral to our very way of being, and translates to the concept of residual awareness. That is, after a match has ended, or after a kata has finished, one still does not let one's guard down. Zanshin is the concept of always being ready for more, never being unready when the next adventure begins.

Zanshin can be overwhelming for me to follow because I get tired. I get physically, intellectually, and emotionally tired, of always having to take care of my body. If it's possible to have clinical compassion fatigue for one's own body, I've waxed and waned through that state of mind like ocean waves change with the weather and tide. Those waves range from gentle, rippling nonchalance to thrashing, wild swells that can even drown me in their whitecaps. My world becomes very small as I dive into managing my needs. Luckily, at some point I always manage to come up for air. It is in those moments when I break through to the surface that, even with all the air I need, I am forever preparing myself for the next time I will go under. All people experience certain aspects of their lives in waves. With EDS it can be rapid-cycling, or lingering, or stormy for a long time, so it is best to be ready.

What can we do? We can practice the best habits as often as possible: eating well (or managing our tube feeds/TPN), staying hydrated, managing our energy levels, keeping in contact with a healthy support system, and so on. We can educate ourselves: read an anatomy and physiology 101 book, learn basic medical terminology so we can communicate with our doctors, get proper testing to establish baselines for our most vulnerable body parts and systems.

No enemy is going to worry about whether I am ready for the next blow. No ocean concerns itself with the swimmer. The more I learn, the less effort it takes to be ready. Knowledge is power. Zanshin is the practice of being ever ready to use that power when necessary. Zanshin is how one learns to swim through the waves.

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.

Karate for Life, From Head to Toe

This morning I washed my hair in the sink, which I do when I want to use hot water, because I take cool showers to avoid passing out.  I felt the rug bunching up beneath my toes because I had been gripping it like we practice gripping the floor in karate!  I knocked one of my knees (gently) against the cabinet because I had been keeping my knees slightly bent as I'd practiced in physiotherapy!  This is fantastic!  A year ago I could not have washed my hair easily, and my hair had been shaven short.

Not everyone who practices martial arts will subscribe to martial arts as a lifestyle.  But everyone who practices martial arts will, at some point, observe a lifestyle impact.  Clearly, the lifestyle impact for me has been profound, by the cumulative impact of small changes.  For one thing, I don't fall so much anymore, which means I don't carry my cane so much anymore, which means my hands don't suffer so much, which means I don't suffer so much.

Sensei says it's when we are tired that we need to work the hardest to stay focused.  He also says it's important to focus on the small things, like foot positioning.  These points have worked out well for me, without having to be complex.  Goju Ryu can get complicated, but the most basic elements are straightforward, which helps me stay grounded, with my feet firmly planted, and my toes curled around the rug!

Be well.

When It Gets Tough

Doubling over in full spasm may make it seem like I did my best in karate, and maybe I did! But I missed a cue somewhere that it was time to stop, so I will work on it! It's hard to know when something like that is a one-off or if there's something wrong with what I'm doing.

Since achieving my 4-kyu karate has gotten particularly hard. It used to be challenging, now it's hard. My skin tears open, my feet get shredded from movement, and I am so tired after class that I have to go right to sleep when I get home. But I'm satisfied with my effort, I've had a healthy amount of social interaction, I've had fun, and I fall asleep happy.

Even though I seldom get through a class without breaks I love to be there, and I look forward to going. To manage the pain I take breaks to stretch, manage pain, and hydrate. This morning I had taken a stretch break, and perhaps it would have been better if I had stayed on the bench afterword, but I ask myself, how am I to improve if I don't challenge my boundaries?

Testing boundaries is something we all do from the time we are little and we learn the word "no." The way I grew up, everything was a boundary, the boundaries moved, and it was dangerous to cross those boundaries. The only residual part of that muss with EDS is that the boundaries change, relative to my health that day. But some of the fights and stamina exercises are starting to remind me of those days. It's an opportunity to let those feelings come up and to work through them in a safe and positive environment. However, working with a counselor helps me unpack those memories, so I don't have to worry about sorting them out during a workout. I can acknowledge that they're there, make a mental note to process the memories later, and get back to my exercise. A lot of people start karate because of a traumatic past, whether it be ongoing abuse or an isolated event. It's important to keep those feelings in check because they can make you vulnerable or distract you. I keep it simple by telling myself those are yesterday's feelings, and then I take a second to connect with today's feelings, all infinitely more enjoyable.

My feet and ankles hurt a lot in class. I stop often to put bones back in, or to give them a break. I try not to let it interfere with my kata, and I work through the physiology of kata movements to see if better precision with foot placement can help. It usually does, much to my delight!

Breakfalls are still scary.  I think strategically about whether or not to let my partner drop me to the floor, and most times they do so very gently.  I haven't thought of safe ways to practice falling, but I'll come back to it.

I'm not worried that I won't be able to get to a black belt level. I'll work hard on the technical aspects and do everything I can to maximize my moves. That will take practice, my meds put me into a stupor, and I can't always decide which move to do next. But I think I'm at the proper level at which anybody with my rank would be if they had my challenges, and I trust my Sensei's judgement. He wouldn't promote me if I didn't belong in that rank because it would be unfair and unsafe. We don't work that way in my dojo; egotistical risks are rightly frowned upon.

My greatest ally is my Sensei, of course. With all of this, he is well aware of my situation and he has an incredible way of helping me through. Not once has he ever cut me down, complained, or yelled at me for not being able to do something. If I bring it up he says to just keep coming. He never makes a big deal of it, and it's never been a big deal. I need that. I need a place where my health is not going to cause a big ruckus that comes down on my head unexpectedly.  My whole karate family is great about it.

Not the best blog post, but it's where I am at the moment. Other than that, food is staying down thanks to Phenergan and I've got a little bit of energy back. I just need to keep eating, which I never want to do. But if it helps my karate, I'm in. :)

On my way out of the dojo today one of our teens held the door for me and said, "Good job today." Then I knew that I was on the right track. I love working with our teens. Every time I see them I greet them with genuine enthusiasm and eye contact. They've all picked up on it and they now return the gesture. I love it! They are all working hard to grow into good people, and though my part in that is small, I'm thrilled to have one. They brighten my life, and that's one of the million reasons I love karate!

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.

EDS Kata Development

I'm thinking about developing kata series for hypermobile and Dysautonomia people once I get to shodan level (black belt). I couldn't do any such thing before then, out of respect to the practice and to safety itself. But it would be interesting.

I believe you're not even authorized to be a Sensei until you achieve at least Yon-dan level, fourth degree black belt, in Goju Ryu. I could be wrong.

The purpose of the kata would be to do as much damage as possible with the upper body, while posturing the lower body such that it would have as few dislocations as possible, such that one could run away. Kicks may push more force through an opponent but the risk of dislocation and landing improperly is high.

One thing I treasure about the Goju Ryu style is that one of its tenets is to close in on the opponent. This significantly reduces dislocation risk. It works, too! When I don't close in properly I can guarantee myself a stupid mistake and two to four weeks of physiotherapy, followed by six months of reconditioning. It doesn't take much. But for what karate has given me, it's worth it. I walk better, fall better, carry bags better, so much is better. The pain is not better. But I'm stronger and smarter about handling the pain, more aware, and more focused.

Advanced kata could involve fighting from a chair, using splints as weapons, and with other mobility aids. We'll see.

Lessons Learning

Karate is where I make peace with my body. I learn to protect it, to discover it, and best of all, to use it.

I feel like I got hit by a truck. Thank God I can work from home. I have barely gotten splinted and meds started, though I woke up at 6:30. Breakfast is sitting next to me, cold. I'm determined to meet all my goals for work today, and to care for myself so well that I get through karate tonight. But man, it's a rough start. Maybe a break to blog will settle me down.

Perhaps sensitive to my enthusiasm, Sensei has begun to teach me Seiyunchin. A month ago he asked me not to study it because it was not my kata yet at my level. So I focused on Saifa and I'm glad to have him looking out for my progress. I enjoy Saifa a lot, it is my strongest kata! I just got excited.

Well, I got what I wished for, and now that I'm learning Seiyunchin I almost wish I could back up! I can't physically sit in shiko dachi for that long. Same with Sanchin dachi stance. Other parts of my life have taken up time and energy, so I haven't been practicing at home. Not good.

Here's what I need to work on (the way I see it):
-Get through or modify Sanchin kata without passing out, choking, or dislocating my shoulders and knees

-Keep Saifa kata strong, polish my performance

-Straighten out mae geri (front kick) for power and balance

-Condition my feet to withstand a pivot on the ball of my foot for mawashi geri (roundhouse kick). I have no idea how I'll do this because the problem is that my skin is not connected well and I can feel it tearing away from the fascia. Maybe a small hop?

-Continue doing lots of push-ups! Maybe I will be able to do them off of my knees someday if I can condition my hands to withstand the laxity in weight-bearing. I've been following the advice Higaonna-Sensei gave me, to exercise my hands 100 reps in everything I do to strengthen them.

-Don't give up. Even if I have to sit down, throw up, lie down, modify, whatever. Take care of my health needs, and follow my Sensei's instruction to get back to the mat as soon as possible.

Future goals:
-I'd like to learn breakfalls. I am a high fall risk and this would be a great skill. Practicing my stances and  has certainly reduced my falls and even dislocations. But I would still like to be strong in breakfalls.

-Rolling and tumbling. I've only done one somersault, and with a spotter, but I stayed conscious! If I could learn to tuck my head

I predict that if I know I can fall and tumble safely that I will worry less in daily life about blacking out. I already worry a little less because I have my port and karate has helped me get better conditioned to withstand the heat. Ambient temperature changes remain a very complex problem.

The hardest part about passing out is that my memory brings back the awful feelings I endured when I was sickest, before my port. Just before I got my port I was ready to stop treatment and give up on life. I was going into shock at every needle stick, the pain was unbearable, the drugs made me feel awful and I was either sedated or unconscious most of the time. I can't believe I survived that and I thank my lucky stars for everyone who dragged me through it.  The feelings that come up today are much the same, but the intensity of those feelings should be lessening and they aren't lessening. So it hits like a wave and my only option is to drag myself off the mat quietly and choke on the tears while trying not to throw up or fall over. I don't know if that sensation is an emotional remnant or if it's actually happening.

I suspect that it's still actually happening because there is no cure for it. But the fact that it reminds me of more severe times even after I've gotten the proper chemo in place means that the emotional component of dysautonomia is still kicking my butt, and needs care.

When you're sick and no one really knows what to do your mind becomes a bad neighbourhood, not a place to go on your own.  For the last year and a half I've been living like there's no tomorrow because for the prior three years I either wasn't sure there would be a tomorrow, or wouldn't want it if there was one. It took a lot of cognitive management to survive that and I was on overload from how much alone time I had with my thoughts.  Now I look forward to the next day.

Anyway, that's what I'm working on. Karate is where I work on it. Balance is a moving target.

Hot Summer, Hard Lessons

I have had good luck staying conscious most of the time this summer. I only blackout a few times a day, and I can sometimes predict when it will happen so that I don't fall.

I blacked out right at warm-up on Saturday. Bummer! But I did everything I could do, gently, by adapting. I missed a solid forty minutes of instruction, during which time I performed other meaningful tasks to help my dojo. I had tried to lie down, start fluids and elevate my legs to restore my blood pressure, but with three different leg injuries and a cloudy head my mind and emotions were like a bad neighbourhood and I didn't want to spend time there by myself.

I'm not exactly sure what is wrong with my legs, these are pains with which I am not familiar, but they have lingered for a few weeks and several times my legs have dropped out from under me. Most of the time I'm fine, but those occasions really get to me. I'm sad about it because my ability to kick will be set back...again. I'll just get back to it when I can. It will be okay.

Summer is very hard. I'm able to withstand more heat than I could last year but not much more, and not without hypervigilance about hydration, sodium, potassium, and calcium levels. The Nausea is back too, and thank goodness for IV anti-emetics.

Next week is Warrior Week!  Hard training, a shiai (tournament), Spirit Training, grading (for others this time around), and a potluck.  I love this time! But I'll have to be very careful. I want to make it count and do my best, but I think I should be conservative about my participation because one more injury will make it so that I can't function. Right now I can still prepare meals but it is hard to shower and do laundry. I have to sleep a LOT.

When I'm in the dojo I want karateka to know I am as dedicated as they come! But when I'm unwell, and I stop to take care of myself, I still sometimes get this little hint of doubt: "do I really need to stop, or am I just bring lazy or unmotivated?" This doubt is not useful, and no one else in the dojo doubts me, so why would I doubt myself? Well, there are a few reasons. For one, when we are in pain or tired we can get discouraged easily. Two, I have been hugely doubted in the past. Three, karate is technically contraindicated for Ehlers-Danlos Syndrome, which I aim to change with a modified curriculum someday. My Sensei never doubts me. He just says to get back in as soon as I can. This keeps me motivated because I do want to be with my friends in the dojo, not on the side in a personal fight to stay conscious or alive. It's just so dramatic a problem, but I have to take it seriously. If I were not realistic and responsible about my body I would not belong in a dojo, because if I'm not careful I can really get hurt. Such is true of anybody. And on that plane, we are all equal.