On Static vs. Dynamic Exercises and Stretching*

"If you can't explain it you don't know it well enough." -Einstein

It's been three years since my last belt test. I tested for 1-kyu in Goju Ryu Karate on November 11, 2020, via Zoom online. My tests are adapted to suit what I can physically do, which is largely kata (forms) and solo kihon bunkai (basic applications). I also need to understand what others can do with the system, and I need to be able to adapt what I can't do in such a way that it would work in the street. This was set from Day One with my Sensei in a meeting that lasted for four hours while we sussed out what my training was going to look like. That was about nine years ago. That's a long time to be a kyu-level belt (non-black). But some people never get this far.

The notes below are a summary of what I've learned about muscles locking up intensely and painfully. My port and daily IV fluids must have been preventing these problems for years. I'm grateful for seven years with my port, it's unprecedented. My medical team is incredible and the value of a supportive Primary Care Physician cannot be understated. For over two years I've been in Physical Therapy and Occupational Therapy, among other rehabilitative efforts. I've also beaten the grave four times, retired, started a small business, bought a new-to-me mustang (I love mustangs, it's like getting a limb back), while also living through the pandemic and attending karate to the fullest, safest extent possible. (That's another story worth telling and this little note is to remind myself!) None of this is medical advice and don't trust everything you read on the Internet. I haven't even run this by my PTs yet.

The Ehlers-Danlos community has already benefited from my Sensei's leadership by observing and trying these methods. My Sensei has also been actively outspoken beside me, and others, teaching people with all sorts of abilities that martial arts is for everyone, that our school welcomes everyone. He's helped lots of us unpack negative experiences with instructors who pushed EDSers to the point of injury or quitting. 

Indomitable acceptance in the dojo is founded in the school's Christian values, and people of all backgrounds are welcome. If I were Jesus that's what I'd want to see. Anyway, on with the science notes: 

On Static vs. Dynamic Exercises and Stretching*

• Given
• When the muscle must contract it's happy to do its job, even if that job is a little tougher because of instability.
• When the muscle must relax, those fibres have no idea where to stop because tendons aren't stabilizing or providing usable feedback. So, the muscle is inclined to remain contracted: "Any time now, tendons.... Guys?"
• Interventions: milieu approach, e.g.,
• Isometrics give the muscles a chance to practice both strength (muscle's ability to contract)
• Short, sustained reps for tone (muscle's ability to remain contracted), and 
• ...also releasing and relaxing in between reps (except they suck at relaxing).
• Manual therapies aid in the physical release of muscle fibres which can only relax passively.
• Pharmacology aids in the chemical release of muscle fibres, which are chemically gated by extraneous sympathetic activity, hormones, diet, exercise, psychology, family hx, etc.
• Things I couldn't fit elsewhere
• Timing - time of day/month; interventions before/after activity; last meds, food, hydration, electrolytes
• Psych - last boost of oxytocin or dopamine; last interpersonal reaction; psychological flexibility; emotional regulation; cats?
• Environment - weather; climate; physical safety risks; fall risks
• Adaptive equipment - tapes; braces; splints; mobility aids, environmental mods
• Support - care team; community members; friends; family, and access to them all
• Misc - what else is hurting (and what isn't!); energy levels; cognition; quality of above factors
• If a muscle group isn't working right, check the opposing muscle groups.
  
• Ongoing "learning opportunities" (that aren't necessarily functional goals, but are more qualitative)
• Emotional endurance when things look bleak for a long time
• When I get sick, any of this knowledge that isn't rote goes out the window.
• Prevention and managing crashes (exhaustion, injury)
• I forgot how to know when a muscle is fatigued vs. exhausted, and when that's a useful vs. hazardous.
• WTF, diet/guts?
• Consistent exercise program
• Managing kinesiophobia and coping without a port like a freakin' boss
• WTF, mind/body connection?
• Communicating with providers succinctly ;)
• Things to remember
• "If you can't explain it you don't know it well enough." -Einstein
• I didn't come this far just to make it this far
• I must rest when my rampage is over
• Didn't cause it, can't cure it, might bitch about it, can endure it.
• Nourish to flourish
• Take your meds. Your doctors know they're not prescribing Jolly Ranchers. (that's mine!) :)
• Sometimes to let it heal you have to stop fuckin' with it. (also mine) :)

Be well. Whatever you celebrate, Happy That!

*I am not a medical professional, so check with one. Don't believe everything you see on the Internet.

Tai Sabaki and Shifting Directions

Tai sabaki is a shift but it is not a final destination, you have to keep moving.

PT didn't clear me for karate this week so I'm watching videos of Higaonna-Sensei. My goal is to find one physiotherapy modality that will help me develop the functional muscle movements and stability to perform one thing a little better than before.

My focus has landed on tai sabaki, body shifting, which can also be translated as body management. Defensively, tai sabaki is used to move quickly out of the way and often includes facing a different direction.

Since my last three hospitalizations I've had to dramatically switch directions in my life. Switching directions shifts one's vantage point, which allows for refocusing. In fact, it requires refocusing, if you're going to get anything done. Tai sabaki is a shift but it is not a final destination, you have to keep moving.

The hips drive tai sabaki. The more stable your core, the better the control. Faster, stronger, easier, smarter. Less easily fatigued. More readily engaged.

PT has been incredibly hard and slow to progress. I feel less likely to fall but I'm still too weak to do a number of functional tasks. For instance, I can't go out to buy groceries and then also put them away when I get home. It has to be done in steps with rest in between.

With tai sabaki you have to stay relaxed, "not too busy", as Higaonna-Sensei explains it. If you get anchored down you can't move or change when you need to. My PT is good at changing directions and finding new approaches. It's not easy work to manage my frustration when a task doesn't work out; a quick shift of focus keeps my time in PT productive and developmental, even if it's not the original task I set out to accomplish.

The goal is to get through, not to land a particular punch. That's why you have to be able to shift, and to practice all different kinds of things. A little at a time, all those little efforts add up to the win.

https://youtu.be/8Ru-fQ10c3Q

Recently I had a nurse evaluation, one of many. "Staying alive, is that what your goals are with your doctors right now?" she asked. Yes, that's the primary goal right now. But it's leveling off and the shift is toward recovery and functional goals for Activities of Daily Living (ADLs). Karate isn't on the list as a method right now, even though it involves exercise. But that doesn't stop me from asking for clearance to go each week. That's the direction I want to be facing, even if I have to shift now and then.

Wheelchair Bunkai

After my teeth are brushed and prayers are all said, lullaby sung to myself in my heart (yeah, really), if'm still awake I review karate bunkai (applications) in my head.

But tonight, I'm thinking about how challenging it is to perform a kata from my power-assist wheelchair, where if you touch the rim you go far, and fast. Different types of chairs need different bunkai, maybe.

Higaonna-Sensei would approve, I'll bet, as long as all the bunkai would work in the street. Karate is for everybody.

How Young is Too Young?

[Video description: YouTube video of very young children in China dribbling basketballs]

Some students at our dojo start at age 3. Instructors work through non-verbal and minimally verbal communication, tantrums, freshly emerging physical development, shyness, hyperactivity, nervous parents, rogue bodily fluids, and more. Instructors receive ongoing training to understand childhood development and the role of martial arts in that process for our students, through adolescence, all the way into adulthood, and beyond. Because they started early we now have a bunch of junior black belts of exceptional ability, and they'll be waiting for several years for their adult Shodan (1st degree black belt) test.

Meanwhile, they continue to develop the maturity and awareness that it takes to have the character of a black belt. Their classmates look up to them as role models for technique and character. Their Senpai (senior karate practitioners) depend on their energy and generational commonality to motivate the adults and to connect with the younger students, respectively. In my humble opinion, too young is not an issue with the trainee, but with the trainer.

Even the Bible tells us that youth is not a barrier (I Tim 4:12*). As the youngest of three I was often excluded from activities because I was too young. It has forever isolated me from my cousins, who are all at least ten years older than I am, which I deeply regret. I missed out on a lot, and I never quite managed to pick up the pace and catch up to wherever I suppose I could have been by now. I've had to learn to let that go, and to manage my pace, because Ehlers-Danlos Syndrome does not allow for controlled burns of energy without at least double the recovery time of an average person. Any less recovery time bears consequences, like depleted energy stores, internal organ dysfunction, or increased dislocations due to fatigue and physical stress on the connective tissues.

It will surprise me if I ever see myself able to pace myself--my body's abilities and limits are moving targets. All I can do is push for early opportunities and early interventions. This does not mean that one should place a child under tremendous pressure to perform a task, whether it's karate, piano, maths, or anything they don't want to do. Encouraging and giving support are okay. Force is not okay. I don't know that "too young" is a thing. Too old isn't a thing in our school. Too disabled isn't a thing in our school. We work with what God gives us.

Thank you for joining me here in my blog today.

 Be well. 

 *1 Timothy 4:12 King James Version (KJV) 12 Let no man despise thy youth; but be thou an example of the believers, in word, in conversation, in charity, in spirit, in faith, in purity.

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.

Adapting Gekisai Dai Ni Kata

https://youtu.be/0Uydn4yEXe4

Gekisai Dai Ni is my hardest kata. It's extremely hard on my joints because of the rounded techniques, which take place on all three planes of motion: coronal, sagittal, and transverse.

For Ehlers-Danlos Syndrome, movements on one plane of motion are best. Movements on two planes of motion are okay. Movements on three planes of motion are a no-no because they most strongly force the joint into a closed-pack  position, with the highest congruency. In plain English, they mash the joint into its socket or capsule the most tightly, which gives it lots of opportunities for the stabilizing tissues to snap, tear, break, sprain, and so on.

Coincidentally, in a hypermobile person, a position at the end ranges of motion, with the most joint congruency, is often the most comfortable: everything is as tight as it can get. Many EDSers enjoy sitting with our legs contorted in unusual positions because, if we pin our legs down as far as they can go in any direction, we at least know where they are, and that they're tight. It gives a false sense of hope that our limbs will stay put. Over time, repeated activity at the end-range of motion will lead to further laxity and weakness. Then, when we need to do normal things in more reasonable ranges of motion, we fall apart easily and don't know why. (Well, now you know why.)

All kata in Okinawan Goju Ryu Karate feature rounded movements ("tripled" movements, when referring to planes of motion). It's one of our fundamental ways of moving, and for some applications it is indeed the most stable and effective.

With EDS, I reduce a lot of my dislocations by simply reducing my range of motion to five degrees fewer than the average person would move (which is 15-20 degrees fewer for me, and I'm EDS Classical Type, not even Hypermobile Type). It took six months to learn to walk this way, and six years to learn to live this way.

In karate, I reduce my stances, especially Sanchin-dachi (Three Battles stance), by just a few degrees. I have three goals with my stances:
1. Don't dislocate
2. Get the same functional outcome
3. Get the same aesthetic outcome

There are times when, curiously, I lose control of my legs. I can be standing, but unable to move. My fellow karateka will sometimes remind me what to do or encourage me to take the next step because the delay is very noticeable, but I'm stuck! EDS is given to neuropathy and radiculopathy, but I've never seen research on momentary paralysis. (Perhaps it's a Chiari-I Malformation thing. I haven't jumped down that rabbit hole of research because I don't have it yet.) I finish the exercise and then take a break. Lack of control of major muscle groups is at least a sign of fatigue.

For upper body movements I have the same goals with my thumbs, shoulder blades, and wrists.  It's even harder with my upper body and I stand a good chance of being sore in the clavicles and ribs for weeks if I ignore those goals. It can interrupt my breathing, and make me even more susceptible to blacking out. I'm getting pretty good at managing it, though. I keep my knees bent and my eyes open until my vision comes back. I don't fall over anymore.

Gekisai Dai Ni is my hardest kata. I took second place in a tournament two days ago, but popped my ankle in the middle of the first neko ashi-dachi (cat stance). Stupidly, I finished the kata, because I didn't fall over, and my head was in "the zone." When I stepped on my busted ankle for the second neko ashi-dachi, I knew I'd made a big mistake. I took care of it immediately after.

My ankle already been coming loose for days and I ignored it, since that's not uncommon. Rookie mistake. I was so pumped for the tournament that I didn't pay attention to my body, and that's where I went wrong. I splinted the next day, but the pain crept up into my knee and hip, so that the whole leg was wrecked by Saturday morning. I missed out on Spirit Training and the karate family Potluck, both of which are highlights of my entire karate life. Instead I'm in bed with my leg elevated, blogging about planes of motion.

For some joints I've learned to finish kata with a dislocated joint, and put the joint back in place later on. It just pops out again if I stop and try to fix it in the middle of a kata. My fellow karateka are used to hearing me popping bones around, so they don't freak out, which is great for my emotional health.

Gekisai Dai Ni is my hardest kata. I need to practice it. I need to modify it and practice that. I could always ask for a different kata, but I want to master it in my own way, even--especially--if I can get through it with adaptation. That's the name of the game.

The best part about my second place ribbon is that the person who took first place has been working very hard on his performance, and he's worked with me on kata a lot! He deserves that blue ribbon, and I'm proud to take second. What a great memory, to compete next to someone who has worked so hard, and for much longer than I have!

Be well.

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.

On Femaleness and Flight

I've never met Marchant-Sensei, but from what I've read of her life and times she is a Dame of ever there were one. I'm grateful to be a part of IOGKF, humbled to share a /mon/.  There will always be cups for tea at my table for her.

Linda Marchant-Sensei is the highest ranking female karateka in IOGKF. She had a high-paying job in the UK, and left it behind to pursue her passion as a martial artist. She succeeded, too. Like every rounded pebble that tumbles over Niagara Falls, you don't become so well rounded without tumbling a long way, getting knocked around and bumped, before becoming just as smooth as the waters that carry you through time.

On the other side of this thought trail stands a fellow karateka in my dojo, a /Senpai/ to me, also dedicated beyond compare. An artist, she studies the body in total, learning to read every curve and arch, working in the dojo to see how those angles change and shape the /gi/ which shroud the figures inside. She is so young to carry this largesse of curiosity, with shoulders already conditioned to bear such weight on a very thin frame. She could remind us all that "thin" and "frail" are not synonyms.

The feminine side of karate is so often characterized by a white crane. To stand before a white crane demands respect for every such creature that ever put itself through the rigor to learn to fly.

--------

These days it is impossible to say just what I mean. As I continue to fight nausea, pain and fatigue, my feelings and thoughts have the impish drive to swell in my head and demand to be known. I have only a fraction of the energy I need to host them all, barely enough. My blog posts may be short for a time but I will continue writing them. It makes me sad to report that I'm still sick. Even though Ehlers-Danlos Syndrome is a cradle-to-grave companion it is still very much unwelcome.

This is a tournament week. I'll harden my thoughts to the point that, even if I don't fight this time, I truly have yet to spread my wings. I must believe that old axiom that says, "the best is yet to come," because I am nowhere near as fierce as I shall be when I finally fly. If femaleness of what I've got to work with, then truly, I am in the downy company of the finest flock.

Be well.

90 Days Sick

Another night sick as a dog. Back to fully dehydrated despite fluids. I reviewed some kata in my head but I'm too tired to think clearly. I'm determined to be strong, the enemy isn't going to ask if I'm feeling up to a fight.

I've been intensely sick for 90 days as of today. I spent the last week in March in the hospital and have been struggling desperately to recover.  I've had a gauntlet of the most gross medical tests I can imagine having done, and have more to go, before I get any answers. Until then I'm on a rainbow of pro-motility agents that work on my guts like your friendly neighborhood jackhammer.

Gastroparesis is the working diagnosis but my emptying study turned out negative. The radioactive eggs weren't all bad, but it was the least disgusting of all the tests, with this Friday bring the grand finale of gross.

I'm afraid to eat because my guts are like tubes full of grenades. I'm afraid not to eat because no food means no energy. Every few days I eat full meals and get so sick that I end up dehydrated and exhausted. And doubled over in pain.

My couch and I are very close these days. I haven't seen the dojo in over a week and my toddler mind is afraid it won't be there when I get back.

In my mind I'm going over kata, but I'm really so tired...so tired.

The enemy is not going to ask if I'm tired. I need to keep fighting. It's in my blood.

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.

The Right Side of the Dojo

Karate prep: Townsend Rebel Reliever leg splint to keep my lower leg in place. Shoulder sling and finger splints on the same side.  The enemy isn't going to ask if I'm okay, so it's time to train and find new strengths. KIAI!

I made it through half of karate class, but it was a very intense time using only the right side of my body! It gave new a chance to learn what I could do in different ways.

We started off with drills. Punching, I worked hardest on pulling my punch back to chamber, knowing that such a move could be used to jab the ribs of the person behind me, or to escape a hold, as is done in Seiyunchin bunkai.

Practicing blocks was the most interesting thing, because when we're doing a drill with both hands I don't think about the hand that's returning to chamber as much as I think about the front hand and its major movement. Having just one hand, I paid much more attention to the directions of its movement; the way in which my hand was facing; and what it was blocking, or leaving open. 

Working in pairs was fun because I had to get creative with bilateral blocks. If the punch was right-to-right handed I did the traditional block. Right-to-left, inside block.

When I got home I had some oatmeal, then I rested on the couch as is my Saturday ritual after karate. I slept for six hours, which was not part of the plan. I should have noticed this when I was too tired to set an alarm, because I slept right through the time to take my afternoon meds.

Ehlers-Danlos Syndrome is a lot to manage. I don't blame anyone who struggles with it so much that they don't do much else, but I do wish everyone could find a way to get a little exercise into their routine, or something they can look forward to doing with their bodies. 

It felt like the other people in the dojo were watching to see how I did things. Their faces said different things: I don't know how you do it; I would never do all that just to come to class; If they can do it, I can do it; I guess I have no excuse not to be here. These are things people say to me, so I know that this is what people are thinking. I'm not supernatural, and I have no intention of inspiring able-bodied people to go beyond what is reasonable for themselves. Able-bodied people are not used to being in crushing pain 24x7; if they had had the injuries I dealt with today, they might have rightly stayed home, for hope of healing. 

Much to my comfort, nobody said I was a distraction or that I should have stayed home. I would rather get a thumbs-up for splinting correctly and showing up than a pitiful face for being in splints. I'm always worried about hearing that I should have stayed home, or that I'm bringing everybody down, because that's how my family has reacted in the past. They seldom do anymore, but it's a doubt that I carry. At the dojo, however, people expect to see me in whatever I come with that day, ready to learn. We are all working through some challenge in this lifetime, and I'm glad that we all spend a few days a week going through it together. I can let my guard down; nobody is going to tell me I should have stayed home because I have EDS or because I can't hear.

My hearing seems to be failing further, that's bothersome. My hearing aid causes piercing pain.  My ear bone implant causes extreme pain and I want it taken out.  I'm not sure I understand how to let go and go back to deaf when all my friends are hearing; I am afraid that my hearing loss will be much worse now because I've had several years with Cognitive Auditory Processing Disorder to scramble up what is left of the hearing in my "good" ear.

I have more to say but my shoulder is killing me, even though I haven't even used it today. I'm confounded by this. I'm also totally wiped out. I slept all afternoon and will still sleep through the night if I can keep the pain under control. This day is still a success because I learned a new thing. 

Do You Tape or Splint?

I try not to tape up or brace my body for class unless I absolutely need it. My primary goal is self-defense, so I want my body to work as one cohesive unit, as I may not be taped or braced in the event of an altercation. God forbid. My Sensei keeps a very close watch on me and I have enough sense to sit out of--or modify--things that would be too dangerous for me to do safely. I follow all safety instructions from my Sensei to the letter, make sure I understand the instructions,  and I trust my partners to do the same. Rotten eggs don't stay in the dojo for long, it's all good people.

Quite a few of the people in my dojo, maybe even the majority of them, have prior combat and martial art training. This makes them well prepared to control themselves, and to taper their aggression. That's actually a part of it, being able to use the minimum amount of force required to be effective. So, they get something out of working with me, too!

Every one of us is struggling with something, whether we have a disability or not. We gather in the dojo to overcome what we can, and to help one another along those journeys. In fact, our ability to be a good partner is a part of our assessment for whether or not we level up. If we are not a good partner, we don't progress. Part of our success relies on how well we can help the people we are working with. Isn't that cool? It's easily my favourite rule in my dojo!

When I first began I only worked with black belts because they had the best control of their own movements, which kept me the safest. It also gave me the privilege of befriending people who had been there for a long time, and who were much farther along in their journeys than I was. As I became stronger and better at what I was doing, it became easier to work safely with lower belts, as I got better at defending myself and lower belts tends to not strike very hard at all.

Every day is different, and every day is a fresh start. You just have to overcome and adapt, keep a level head and keep going. You will learn volumes about your body in your first three or so belts, and after that you will get into learning about the martial art itself.

Don't forget that an enormous incentive of joining the martial arts is connection with the community greater than you'll ever fully access. For example, my karate Federation, IOGKF, is worldwide. We all do exactly the same exercises, and if I walked into any dojo I could expect the same results. It's also awesome to think about the fact that many of those people already have a lot more knowledge in physiology and combat than I do, many of them are medically trained in case I do get injured, and I park my car right outside the front door so that I have access to every mobility aid and pain reliever I can jam into the vehicle!

You're going to do great. Take the plunge!

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.

Couch to 5 Kata

I've been a blue belt for quite some time now, and I'm quite comfortable here.  This is the last belt in the first half of the belt series of Goju Ryu karate-do.  That means once I level up, things get real.  I know five kata sequences now: Gekisai Dai Ichi, Gekisai Dai Ni, Saifa, Sanchin, and Seiyunchin.  I know a lot of the bunkai (applications), I've got some randori (light sparring) under my belt, and a few blue ribbons from shiai (tournaments).  Most importantly, I've got a strong physical and emotional bond to my karate family.  They are an integral part of my existence, people for whom I pray and cry, cheer, and celebrate.  When they level up, I get so excited to have been a part of their progress that I feel proud of myself, too.  There are people who started well before me and well after me, leveling up around me.  When I finally do level up I know I will have truly earned it, and it won't just be for attendance.

Some people don't like using a belt system, but it helps me feel safe.  When higher belts know I'm just a lower kyu-belt, they will be more careful. When white belts know I'm above them, they may be braver, and worry less about my port or about the syringe of anti-emitic drugs sticking out from where I have it tucked into my bra strap, in a place that I can guard fairly well now.  Belt systems give us opportunities to celebrate the milestones, to cheer one another on, to urge ourselves to keep moving forward, to understand where we are in the curriculum, and so on.  I like it.

For a few days I've been stuck on the couch during what one of my best friends calls "Shark Week," a monthly uterine blood bath.  The progesterone during Shark Week is theoretically the culprit for the excessive laxity and pain, which one of my doctors suggested is nature's way of setting up my body to push out the baby I'll never have.  I dragged myself to the dojo, hearing my Sensei's voice in my head, "You need to be here."  I couldn't even change into my gi, I just got there and took myself to the bench.  You know what?  It was the right decision!

I'm working on learning the sequence of Seiyunchin kata.  From the bench I don't have a chance to practice like I'd like to, but Sensei always includes me.  He still answers my questions, still expects me to pay attention, and I like that very well.  Seated at the bench I can watch everybody's different shape move along the guidelines, see how it's done, see how it's not done.  Not having to perform means having the energy to really listen and think about what Sensei is saying.  It's not my preference, but the truth is that it gives me a chance to grapple with my hearing loss, and to let myself think of hearing as a positive thing for once in a while.

Today is Transgender Day of Remembrance.  I have often spoken of my gi as a comfort item, something gender-neutral, a garb in which my body can just be what it is, free from interpretation and judgement.   We simply accept one another in the dojo, and it's a safe place. I wish all trans people would take at least one self-defense course.  The legislative efforts we've made are great and all, but out on the street the fact is that people get away with hate crimes.  My thoughts are with Krista, who entered immortality several years ago now.  I never stop missing her.

It's a busy blog tonight, lots of thoughts are racing through my head.  Another thing I'm thinking about is Buffalo, my home.  They've got about seven feet of snow in the Southtowns, where I'm from.  I wish I could be there to help shovel, to play, make snowmen (yes, I want to build a snowman), make snow angels, igloos, knock icicles off buildings and trees, and then come in soaking wet and frozen solid and warm up with hot soup.  I want to knock the little clusters of ice from the tassels of my scarf and blow my nose until I stop sniffling from the thaw of mucus membranes.  I miss the giant ice pack that is Buffalo, where anything that hurts is just a snow bank away from relief.

But I'd miss my dojo if I left.  My heart is 100% in it, a part of my identity, perhaps the strongest part of my identity at this time in my life.  Hopefully forever.

Be well.

Who cares about anatomy?

I think everyone, especially everyone with a chronic illness, should read at least one Anatomy & Physiology book, even if they won't understand it all. It has really helped me put the pieces together and keep the terror at bay. I can get through a violent muscle spasm in my "shoulder" by knowing, "well of course it hurts, it's right over my brachial plexus!" I know it sounds intimidating but it makes a huge difference.

The spasms on my brachial plexus on either side have become officially chronic. Last night one was so severe that I had to leave the dojo. When I got home I showered, took a beefy muscle relaxer, and my night was over. I lay awake surfing funny animal photos on Pinterest, waiting for the pill to deaden the hellfire in my neck.

When I can't get to karate it's a horrible time. My emotions go into a tantrum and I feel so lonely for my karate family. I try hard to be patient, but I reel on the fact that karate is the one thing in which I have ever physically succeeded, and it's all I want to do.

Sometimes I catch myself thinking that, if I could just arm myself with enough knowledge, maybe I could beat Ehlers-Danlos Syndrome. At those times it couldn't be harder to accept that such a plan is completely unrealistic. Although, knowing more does help me cope better, in that it helps me to communicate exactly what I'm going through, helps me interpret what moves I need to make next, and helps me push myself to do the therapeutic work I need to perform after I exercise.

My health has been on a frightening decline since July. But I'm stubborn and I'm working hard on this life, piece by piece, poco a poco.

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.

Gasshuku - MCF 2014 Karateka Kodomo (Karate Kids)

In small group training I had the pleasure of working with a young lady from Oklahoma.  She's already tough as nails, she is going to be someone very important someday, I can see leadership and patience in her.  She is like a cherry blossom, and when she blooms she's going to be so green and so strong that she will give shade and beauty to the world around her for as long as she is in it.

By the recommendation of my wonderful partner, we moved toward the back of our small group and worked on Bunkai with two other young karateka, a brother and sister who love one another enough to even stick with one another when they have an opportunity to work with karateka from all over the hemisphere.  These siblings have a sweetness to them, a camaraderie where one will not move without bringing the other along.  They have a lot of love and a strong mother, so they will move up, and bring one another along for the adventure.  This is as it should be, and to have had a few moments practice with them fills me with satisfaction because I shall have been a part of that story.

My partner and I split up the siblings so we could help them improve their skills.  The younger one, a boy, was very gentle with me.  I asked him why, and he said, "I don't like to hit people.  I don't want to hurt anybody.  I would feel really bad if I hurt somebody."  It was a moment where I had to decide whether to roll with it, or to try to guide him.  This is someone else's child, with their own way of raising him.  They are trusting other karateka to be good senpai for their children.  So I said, "You know, that's a great attitude to have, that's exactly as it should be.  But when you're working with a partner, you're going to be careful, but you will be teaching your partner what it feels like to get hit, and to be brave, and to respond well, so that they will be able to protect themselves if they come upon someone who is not as friendly or as caring as you are."  I don't know if that made sense to him, but it seemed like the right thing to say. At dinner I got to sit with that family, and I should like to know them forever because they are fantastic people.

It was a genuine pleasure having the privilege of working with IOGKF kodomo. My goodness, what hope I have seen in the youth this weekend!

Gasshuku - MCF 2014 USA Part 1

My hotel room looks like a MASH unit. A fancy one. Hello from the Grand Hyatt Tampa Bay, host of the Miyagi Chojun Festival 2014 for North America. Day two of four is complete and I'm a tired zebra.

Zebra?
For those reading who do not know, the reference to zebras refers to a medical adage taught to med students: "When you hear hoof beats, think horses, not zebras." The lesson is to think for the obvious diagnostic explanations first, and not the exotic. For people with Ehlers-Danlos Syndrome the argument we make is that "Zebras do exist," and for as exotic as our condition is, it must not be ignored or excluded from the diagnostic process.

Mah:
I flew in to town a day early and had one of the best days of my life with my mother, who lives in the area. We had salads, long talks, swimming time and a wonderful dinner made by my stepfather. I truly enjoyed myself and slept very well.

Day One:
I got up at 5am, had a protein shake, coffee and fruit salad. Relaxed, stretched, read a little, played some video games. Mom and Stepdad dropped me off at the hotel.

Hotel Room Fiasco
The short version of the story is that they gave me the wrong room three different times. Not accessible, not overlooking the Bay as promised in the reservation, and a million other problems. This took from 11am to 4pm to sort out. The Gasshuku began at 1:30.

Gasshuku Day One:
Registration was a breeze. It was beautifully organized! Flawless. I appreciate a good start, it sets the tone for the entire weekend.

Oops! Nakamura-Sensei very sweetly informed me that I had accidentally shown up for black belt training at 3:30. Regular training began at 4:30. I parked myself quietly in the back. Higaonna-Sensei came up to me and said to use the time for strengthening. Strengthen, stretch, and flex one hundred times. He said that will make me stronger.  This was my first time speaking with Higaonna-Sensei. He is exactly as I imagined, and I understand why he chose Nakamura-Sensei as his successor. They are both full of love, discipline, respect. One hundred of anything, eh? Okay! I filled 100 water glades for people to drink. ;)

There's so much more but I'm exhausted. More to come. 

On Self-determination, Anxiety and Guilt

Working from bed sucks. I want my bed to be for reading and sleeping. I'm glad to have fought for the ability to work from home but I'm frustrated to be so limited in my own home.

It's one of those days where I've been awake for hours and haven't the energy to even brush my teeth. Just trying to stick to the schedule and pace myself. The pain is sky-high and the anxiety follows suit if I don't keep actively reminding myself that there will be better days.

Sensei called to ask how I'm doing and I am very grateful for the call, it was nice to hear the voice of another human being. On days like this when I had physiotherapy at home to look forward to I had a little help starting my day, and then I had the rehabilitation help to try to get my pain under control. It left me better able to function, which translates to being able to function at all. Now I don't have that and it's tough again. This can get depressing but I am trying hard to remember that I look forward to better days.

Tonight I have karate. Here is the thought process:
-How will I get there?
-I'll be up by then, but will I stay up?
-Can I go all out since I will be going right back to bed, or will my blood pressure destabilize?
-Should I use my crutches?
-Should I bring my blood pressure cuff?
-Will I be able to work the day after?
-Would I be able to work the day after anyway?

Karate is a part of my exercise regimen and a human right of self-determination. It keeps me healthy by giving me physical improvement and emotional connection with other people.

Someone asked, "what do you look forward to?" And the answer was karate. I've pined on this question for a month. That's the answer. It has become a need, part of my identity. A very positive part, curiously compatible with my disabilities.

I may not last in the class tonight but I am compelled to be there. It's a good thing, and no one need ever feel guilty about a best effort to take care of themselves.

Put Down the Pace

I will look for some information on pacing myself. In the beginners' class this morning, something like 80 mae geri and mawashi geri is too many geri. My spine is toast and now I'm missing my own class.

Today's Sensei is doing a great job with conditioning. She explained that if you have to do a lot of one particular move it is important to keep your pace, but that you can lower your intensity for a few reps so that you can catch your breath, relieve your muscles and go back to full power. I find that this approach gives me a chance to work smaller muscle groups during the lighter times.

I'm having a tough morning. This will be my last anniversary before getting divorced. I had it in my head last night while I couldn't sleep that it was going to be nice to kick the hell out of nothing (i.e., the air) but because we were conditioning we got to use pads. It seems I kicked much harder than I should have because my whole spine is mad about it. This is so hard to deal with. I wonder when the nightmare will end, and that's useless, because it will never end. I promised my life to her and it takes two people to keep a promise, so that promise will not be kept. It will always be a room in hell and it isn't easy to get used to the heat. It's okay with me that I went a little hard on the kicks this morning but it will be nice if I can cultivate more self-awareness and self-control by this time next year.

It will help lessen both the physical and emotional pain if I make this a goal so I will aim for it. Shifting my attention will be a healthy way to redirect the energy. I don't know how I will take care of the pain in the meantime, so that will be a task of humility, being humble enough to ask loved ones for help and being string enough to turn the other cheek to  criticism.

Pardon my language but divorce is fucking brutal.  My dojo is really saving my buns right now.