Zooming In On My Progress

Online learning is getting to me. In karate tonight over Zoom I tried Sepai kata for the first time. I miss my dojo. It'll be interesting to see how my body tolerates karate with no port and overall reduced activity after the pandemic ends. I look forward to building back up because looking back won't do me any good.

I've been in physiotherapy for a year and a half now since sepsis ended. I've been out of the dojo since before the pandemic hit the United States, where I live.

Learning karate online has been a lot of fun because it's different and I get different things out of it. I can turn the volume way up on my Sensei's voice, for instance, whereas in the dojo I'm almost totally deaf. Learning online I can write notes down and scribble out my questions and their answers. I can rest, add a fan, hydrate, and manage blackouts more easily. The cats are distracting but that's only because I want them to meet my dojo family.

It's frightening that my body has deconditioned in so many ways because of sepsis. My muscle memory is carrying me further than my actual memory in some cases, and in other cases I'm choked up from drawing a blank.

My Sensei is extremely generous with my schedule and my abilities. He has things he wants for me and I have things I want for myself. At the end of the day we're glad to be alive and we have faith that this is the foundation for anything else we can imagine to come true. :)

Sepai, though, which is thought of as the oldest kata, has a lot of moves in it that are new to me. It looks like Sepai bunkai might be easier to perform than the kata itself (at least, kihon bunkai).

I'm frustrated most moments of the day with the pain, which is a lot worse, a lot sooner. Pain control in the U.S. is a strange racket. With Ehlers-Danlos Syndrome it is unrealistic to expect that one may ever be completely out of pain. But it is realistic to expect that I can learn to defend myself. I don't need every kata to be lovely. I don't need every bunkai to work. I need to practice and ingrain a few solid techniques that will work for me in different situations against different types of people. I choose to see my life as worth defending. There are many people in my life I wish saw themselves that way, but I can only control myself and invite others to join me in the adventure, in the work. And boy, is it work.

Eventually, everyone gets seasoned at working toward or fighting for something, so long as we do not give up and check out. And even that is another type of fight altogether worth besting.

Saifa Kata and the Clavicle Strikes

I'm relearning to perform Saifa kata at full speed and power without dislocating my clavicles. It's funny that one of the Saifa bunkai is a clavicle, too.

PT and I think it was fine when my port was anchored to my chest but now that it's out and there are all these pockets cut into the muscles they aren't holding my clavicles in place anymore. It's not supposed to be the muscles' job to stabilize the clavicles, but in lieu of connective tissue to do the job, the muscles aren't really capable of doing both while also full of pockets. So, strengthening and toning. It'll sort out. Saifa was my best kata for a while so I'm eager to get it back as best I can.

In Defense of Self

Karate is about self-defense. Period. It's not a sport.

I've convinced myself that the grief process for how far I've slid in the past two years won't be as severe, so long as I can keep on partying with aggressive dance moves in my funny pajamas. For most of the last ten days I've had intractable pain. I can't wait to get back to karate in any possible way besides reviewing in my head. I need to believe I'll get back to it because without my port I've been at a tremendous loss. Karate is a huge part of me that I haven't lost, and I don't intend to.

Retirement due to disability isn't like voluntary retirement at retirement age. For one thing it's guaranteed poverty. It's means-testing for every bit of support. It's nursing and medical re-evals a dozen times a year just to make sure you're really not going to improve. Same questions over and over. Same paperwork. Same signatures, scheduling, hours and hours of life spent on enough  paperwork to make you ask yourself, "can I really not work if I can do all this paperwork?" But then the symptoms stack up, everything you swear you've washed still smells like puke to you, the mail says you're overdue for more medical exams, your best splints won't close over the cat fur in their Velcro, and it's hard to tell what day it is because you can't remember the last time your sleep schedule was diurnal. That's on top of actually staying alive and uninjured, splinted appropriately, meds, physiotherapy, occupational therapy, medical appointments, paperwork for those, blood work, pharmacies, insurance, prescriptions, bills, diagnostic imaging, durable medical equipment, residential mods, vehicle mods....

Suffice to say, I'm having a hard time.

When I'm at karate that falls away for a while. I'm enchanted by the physiology, the safety, the methodology. My Sensei delivers this balance of humour and heft that level off the risk of death or permanent injury similar to the risks I live with day in and day out. Things slow down and I'm not thinking about how close I am to a joint dislocation. I'm just doing one thing at a time and when something pops out I put it back in. Easy peasy.

There's no paperwork, no evaluation. Nobody is going to check to see how functional I am. They're just other people on the floor on their own journeys, and we're just doing the same thing together for a time. We're all pushing our own limits. There's no competition, only partnership. There are no cliques, only karate family. We're a tight-knit dojo and your body or intellectual ability does not limit you in our school. We are inclusive and I am included.

In my school I don't feel invisible. When I can't be on the floor I have extra projects to participate, in character development or in projects that help our school grow. I get to do really cool things with every language I know, with technology, building, and crafting. There's never a break in growth and strengthening, and that's what makes karate invaluable.

Karate is about self-defense. You have to believe in your life and develop a life that's worth defending. You have to build a self to defend. I've lost a tremendous lot of my self in my retirement. Karate is as good a mode as any to get that back or grow a new sense of self. So you see, I'm eager to get back.

Kata in the Time of Covid-19

Due to the Covid-19 virus everyone is staying at home and that's a good thing. Karate classes, like all other classes, have moved to online video sessions.

Here are my notes from tonight:

• Warm up before class!
• Ushiro geri - remember not to let hips extend/turn sideways.
• Question: Seiyunchin Kata - my shiko dachi is getting stronger and more square! But my lower back pays for it later. What can I do to tone and stabilize that stance?
• Answer: The lower back was not meant to steady the spine. the lats and butt should be carrying the workload of protecting the spine. If hip flexors and hips are weak, then it shifts to your lower back, and you'll get pain because your lower back muscles are a lot smaller. That part of your body can't carry the weight. The girdle of your lower back, abs, and your butt, if they're weak the spine will fall out of alignment.
• Ballistic hip movement will be painful if core is not strong.
• An open hand can be used like a key, for unlocking something and making room to strike.
• The angle of my stance and the center of my kata determine where I'm going to strike (my angle to my opponent), not where my opponent is standing.

My space is a bit awkward, there wasn't a good way to handle it so Sensei could see me and I could see him, too. Behind me are some of my partner's belongings so I thought it would be better to respect their privacy. It's a small city townhouse, the third floor is split into our bedroom and my office. The TV is in my office and the space I made to exercise is in the bedroom! I'm okay with it!

Loud and Clear

Practicing with some time like this, with my own Sensei teaching online, is a tremendous benefit for me because I can turn the volume up very high to hear better and I can switch devices to ensure a clear sound. I catch a lot more information when I can hear than when I'm in the dojo where I'm virtually deaf to instruction except for what I can lip read. With an online environment I can also stop to write down things I hear for review because my auditory memory is in a constant state of overdrive during verbal instruction.

Being deaf in a learning environment means that one misses out on what's called "incidental learning", beautifully explained by ASL Stew:

Direct link: http://www.youtube.com/watch?v=mPSV4JgfTnQ

My Sensei has many pets. They walk the lines like Senpai do in the dojo, checking stances and ensuring we stay focused.

Physical Recovery Update

It's been now fourteen months of physiotherapy since my last bout with sepsis. I am back at the dojo, back at karate, as best I can be. This online method is giving me new information and helping me drive home details I have never gotten before. I've improved a lot but now I know exactly why, and to keep doing it!

In particular, PT has meant stabilizing my hips and finding creative ways to manage debilitating tightness in my legs. Since it's not possible to stretch out my muscles without also stretching out my tendons it's been useful to use a TheraBand Roller Massager before bed and whenever my joints lock up. It catches trigger points nicely, too, which knocks out two birds with one stone.

This is an exciting time for my body. I've worked hard on it. I'll never be bored with this body because there is always something to do. I think that's a good way of looking at it--as good a way as any.

Gassho, may you be well.

On Retiring from Karate Due to Acquired Disability

A fellow karateka has announced their retirement from karate due to a cascade of horrendous medical events. I wrote them this note and I hope it will help others.

---

Sensei, I hope you will see this message coming to you with tremendous respect and humility.

You may think you've retired from karate but you have merely shifted your attention to a new battle. You are one of us, a disabled karateka, a different type of warrior. Higaonna-Sensei asks us to imagine who we were yesterday as our opponent. This is no different and you are stronger than ever. A whole legion of us is beside you, just as afraid and unafraid as you are about what the next battle will be. But we are a brave troupe and we don't leave people behind.

I'm a humble 2-kyu but I'm a formidable foe against chronic illness and all that comes with it. If I can be a listening ear this is a safe place to grumble it all out. We don't know the same people and it does not get repeated.*

I wish that you will find many ways to laugh and play, to cope and to love.

Rei.

My world is full of people with mostly congenital disabilities. People with acquired disabilities have a much harder time adapting. Your resilience continues to stand out and your willingness to speak out about your experience goes on to help others. Thank you for the will to share your experience. I am learning from you how I might help others cope and find strength after such significant change. :) Please keep it up (if you feel up to it).

*Only make a promise of safety and confidence if you can truly keep it. Otherwise, offer to listen.

Adapting Juunbi Undo (Warm-Up Exercises)

Paul Enfield-Sensei has shared this generous explication of how Juunbi Undo is done and what it's for. Though I've explored this for years through the lens of Ehlers-Danlos Syndrome I spent this morning in physiotherapy going over Juunbi Undo and modifying it to be more Ehlers-Danlos friendly. Briefly, that means swapping out stretches for isometrics and Proprioceptive Neuromuscular Function (PNF), changing out rotational movements for balance and stability challenges, and keeping the practice as authentic to the original purposes as possible.

https://www.facebook.com/GKCgoju/videos/1923665004315538/

Here's a bit of history that's endearing to Miyagi-Sensei and speaks to his intentions in creating Juunbi Undo, as well as his methods: http://www.iogkf.com/newsletter/edition_2011_4/articles_pg_04.htm

It's quite accessible to begin with, and to me that's what makes Okinawan Goju Ryu Karate-Do a cradle-to-grave martial art.

My entire medical team would prefer I took up Tai Chi, and I get that. But Karate is where my heart is. They are very compassionate in their understanding that I have a right to self-determination, and are generous in their support of all my adventures. They also have the wherewithal to help me cope with the reality that it's not time to be in karate right now, but that if it's a goal, then I need to be moving in that direction as best I can (even if my best is a C+ that day). People who don't have EDS often have trouble understanding that one's medical team often becomes closer than one's own family because the work you're doing together is so intimately connected with oneself, and that this work is the avenue you're traveling to move as close as possible to the rest of the world. They are the bridge and the waters are rocky, troubled rapids at all times.

It will be years before I understand the intentions of Juunbi Undo to a level I consider adequate, but a good warm-up is crucial. Juunbi Undo is a perfect way for anybody to take inventory of their body's functional level, so it would be nice to have a similar method in the EDS toolkit someday. I'd very much like to be the one who develops it, so it's just as well that I'm starting now.

Here's what I do know:

• It's been two years since I could regularly attend karate to a developmental level.
• EDS Sucks.
• If only in my head, I haven't stopped reviewing kata.
• There has never been a mystery as to whether my body would tank to a point at which I couldn't keep up karate anymore; it isn't necessarily a permanent situation. Karate is self-defense, and everyone can practice self-defense, even Zanshin (perpetual awareness).
• This is hard. It's very hard. It's physically and emotionally hard, both to practice and to not practice.
• It's worth it.
• I'm worth it.
• "The fun is in the effort." - Lincoln Bragg
• My gi still fits. :)

Be well.

Sensei's Extra Duties?

My physiotherapists (plural) did not clear me for karate this weekend (appropriately), which is the Paul Enfield Gasshuku hosted by my own dojo. I'm *really* trying to keep my cool about it. My Sensei has been talking me down for days, reminding me that there will be plenty more opportunities to train, that the school isn't going anywhere, that I just have to keep doing what I can to get better and stronger. All the right things that I need to hear.

Having been at this karate adventure for almost eight years now, my Sensei is so much more than my karate instructor. But I can sense his frustration, too, with my chronic absence. He isn't frustrated with me, just with my situation. On one hand ithat feels even worse because it's double the let-down. On the other hand it feels better because I'm not alone in this battle.

I'm just frustrated. I want to be at the dojo, doing dojo things. Instead, I'm blogging about my frustration and hoping to glean some wisdom from the effort. It's a swing and a miss this time around, but at least I didn't just sit with this sentiment in my head. Points for that. Pfuh. EDS sucks.