I ask Sensei for their preference outside of class. If it's a medical need, say so. You'll get your answer.
In my school I have the arrangement to bow out and go. When possible, I wait for an activity change.
If there is kumite I will wait to see if we have an odd number of students. If we do, I form a trio with another pair so that I can rotate out without inconveniencing anyone else.
My greatest stress over this is that the bathrooms share a wall with the dojo floor and I absolutely cannot fart quietly. But once I'm in the room where that's the thing to do, it is what it is.
This story meanders a bit, stay with me. I'll try to give trail heads.
Assault:
I get hit on. A lot. It's always been this way. Last week I got hit on twice in the same day, the first time the guy followed me on my walk home from physical therapy. He would have overpowered me, even with my knife. I got away by taking his number and texting him. It was hours of receiving pictures I did not ask for and being told all sorts of things intended to lure me. I got lured in and raped that way on a military base at 19, and sexually assaulted in similar fashion a few years ago, which the police, courts, and crisis centers made so much worse. This time, I used the tactic to my advantage.
❌ Fight
❌ Flight
❌ Freeze
✅ Fawn
Surgery:
When you go under the knife for a surgery there's a time in post-op where you are taken off the vent and woken up. Even though my vitals say I'm at 100% Sp02 it always feels for a few hours like I can't fill my lungs no matter how hard I try. It's like they are sticky, they won't expand and I can't get to them. But that first conscious breath coming off the vent is a doozy, and that's what I felt last weekend in my spirit.
My karate origin story:
Over a decade ago, a Sensei from Isshin Ryu in my home state let me participate in a women's self defense training at his dojo to see if I could even physically manage using my body for self-defense. Clearly, he already knew the 'if' answer was yes, and the core process was to determine the 'how'. When that day ended I was hooked and it started me off on a journey in Goju Ryu in the state where I lived, which changed how I lived, forever.
Medical:
When I could no longer stay conscious on my own an Bard IV PowerPort gave me seven terrific years of additional freedom to continue earning a living, living independently, and it unlocked in me the ability to really exercise for the first time in my life. Then I got sepsis. Thrice. It set off a cascade of devastating losses in my life, one of which was karate. I lost my career, my health, many relationships, my freedom, and so much more.
For the past six years I have been hanging out and coping, trying to find what to do with myself while I wait for death. I have worked on a million projects with no sense of meaning or direction, just passing the time as best I can until I don't have to fight and suffer anymore. This is not a good way to live.
Assault - new response:
After I was followed last week I collapsed for a few days, and didn't know what to do. I cancelled plans, ignored my phone, and let myself sit with the fear and humiliation I went through to get myself away safely. Given my rough history, I had all sorts of helpless feelings of being trapped and tired of fighting just to exist until death. I took all that to a therapist to discuss it and get my head level, back in the present moment. Then I contacted the Sensei who gave me my start in my home state. Again undeterred, he invited me to a knife training class as a refresher.
For years I hadn't been on the mat, most of my final classes were online during the pandemic. I've had a massive weight change, so my gi no longer fit properly. Sensei removed that barrier by explaining that in knife class they train with black pants and white T-shirts. No problem, I have one of each! And the dojo has gi in my new size, though my obi is far too long now.
Waking up:
Back on the mat I knew exactly what the Sensei of that class needed to know and how to adapt, because I've been welcomed to participate at this dojo when I've been in town over the years. They are a welcoming and considerate culture of martial artists, integrated from lots of different styles. It's their culture to honour diversity.
When I saw how naturally it came back to me I had to do something about it. I spent an hour journaling right after I stepped off the mat. Sensei sat and reviewed it all with me, which took an hour. When I started in Goju Ryu I had had a similar talk with my Sensei there, so I knew this was essential, appropriate, and generous.
Sensei invited me to try for a month, sold me an affordable new gi in my new size, and off I went. I wish I could remember how he'd said it, but he advised me to wear my white gi with my 1-kyu obi. The white gi would show that I'm new to Isshin Ryu. The 1-kyu obi would show that I'm coming from another style where my rank is higher, so that Sensei and Senpai could set their expectations appropriately to my skill level. I felt such a life and dignity when I was told to wear my obi, it's an honour to have achieved what I have in Goju Ryu, which I owe 100% to my Goju Ryu dojo and to Higaonna Morio-Sensei, plus fellow practitioners the world around. When I wear my 1-kyu obi, they are all with me. There is no brown-black obi in Isshin Ryu so it's clear that I'm coming from a foreign style with no risk of confusion. My obi was earned and it's really mine, so I am extremely proud and humbled by the invitation to wear it. I feel safe in it.
My first class of Isshin Ryu was fantastic. I learned a lot, remembered even more, enjoyed my muscle memory, and got my brain into the mindset of taking in new guidance with humility. My body kept up because I knew better than I'd realized how to pace myself and communicate my needs. I left there feeling alive for the first time in over a half-decade.
It's now three days later and I'm still on the couch recovering from the exhaustion and managing pain, but I earned this. It's not a wasting away from an unused body; it's a triumphant call to rest and recover from an awakening. It will take months to years just to get my body on track again to whatever its new normal will be without hydration and with other novel, severe diagnoses. But it's life, and it is not waiting for death. I am not waiting for death when I am doing the karate that has been so much of my life and identity for so long.
While it's disgusting that my return to the mat comes from a bastard loser making me fear for my life and safety, I have long-since developed a trajectory, goals, and methods for myself to survive this kind of nonsense. When I got out a paper and pen they were all there for me.
Higaonna Morio-Sensei started a new global federation at age 84. I am starting over again, too. My flabbers are ghasted. I'm back here on earth, just waking up to build my new empire. I must stay brave, and that will be the challenge going forward, but as for today, I celebrate.
"Pull your pants up!" I heard from my spot in line behind the teen who received this poorly decided advisement from the man taking tickets to the reptile show. The man's voice was loud and his tone was nasty. Immediately the teen complied--until he was through the door, at which point his pants dropped right back down to where they were. Then it was my turn. "Fucking prick!" the man yelled, "he pulled his pants back down again as soon as he was in the door!"
"And that's the way to handle that?" I asked the man. I was not yet through the door and the man to whom I'd handed my ticket was allowed to close it.
But I'd paid for a ticket and nothing about my encounter with this unhappy man was going to prevent me from getting through the door, if I could just keep my temper in check.
"Well he's being disrespectful!"
"I understand that that's how you feel, and I am asking you whether telling and swearing at a child in front of other paying patrons is the way to handle that."
He did not answer. He had shouted at a teenager to make the teenager feel guilty and embarrassed, and his shouting didn't work. But what it did do was embarrass him when somebody called him out on it.
The last thing I want is for people to dread talking to me. It is never my intention to embarrass, even to teach somebody what it feels like. I had to do it once to help a young teen understand what his behaviour looked like and how it affected his mother. I screamed like any number of people used to scream at me when I was getting a beating as a child. As I was growing up other adults would watch or go on about their days as though my cries (and subsequent blows for having cried) were radio static and nobody was to touch the radio dial. I never begged them to step in because I knew nobody would. Later I learned that the silence of not seeking help or comfort has to do with attachment to a caregiver who is supposed to protect you and does not.
The day I had become the one yelling at a young teen I had spent the rest of that evening debriefing with other children in the house, one by one, to make sure they understood why I had done it, reminding them that I love them all, and that instead of ever talking to someone that way they should go to an adult they trust to discuss what happened and what they might like to do about it--even when they become adults themselves. What had he done? He had been irritable and lashing out for most of the day, but then swore at his mother, which I would not tolerate.
During the reptile show I stayed out of the ticket man's way by changing direction if I saw him in my path. He was much older and I had wholly embarrassed him on several levels. I think it hurt his dignity that some female with a cane took him down a peg, and in such a way that any further raging would clearly be more of him embarrassing himself. After challenging somebody you don't further harangue them with your presence while they lick their wounds. If anything, you go back and render aid. I had deeply wanted to follow up, but I was there to have fun and I had made my point.
I did not further engage the man because I had challenged a belief about how to behave when feeling disrespected and he instantly recoiled. I did not unpack different reasons he might feel disrespected, or bring up public or political events that are linked to disrespect as a buzz word. I did not attack him personally, make assumptions about his values, call a supervisor, leave the event, raise my voice, or ignore an indignity that could have been prevented. And boy, was it hard.
My two primary goals of Goju Ryu are to end an altercation as quickly as possible and to be a better person than you I was yesterday.
If I had had more time to deconstruct the situation in the moment I would have followed the young teen to talk about it and to discuss how he made his decision to appease the ticket man, but only until out of sight.
Was the teen's behaviour indeed disrespectful? Maybe. He had been yelled at and embarrassed in front of a crowd. A young male, he was compliant with the request. But no one else's waistlines were checked. No skirts are checked by the antiquated practice of ensuring that skirts were no shorter than 3" below where the middle finger falls when hands are at the side.
Regardless of how much I did and how I did it, what I did do was my best at the time. As a participant who invited themselves into the exchange I'm here in my blog, reviewing my own behaviour, to decide what I might have done differently, if anything. I will not be a safe person to be inhumane around. But I am also still honing my skills at leading and teaching. Teaching is messy work and so is learning.
To be a good teacher you have to be clear about your objective. My objective was to intervene and remedy without causing further harm to what I saw as an injustice. My motivation is to never stand by and allow a person to suffer the way I did.
Activism, to the activist, is hugely trauma and compassion work. It's about not tolerating what we see in front of us when what we see is harmful to others. Some of us don't want people to suffer like we did. Some of us didn't suffer and understand the benefits of limiting the suffering of another being.
Note: In this article I did not mention the race of either participant. If you have ideas about what their races might have been, this is a great moment, right now, to think about what background ideas behind your assumptions may be inaccurate or even misleading. You might wish to discuss them with someone you trust. Right now. Put words on it.
Ask for what you need; the point of this world is to share what we have when we already have more than enough.
When you make an ask, you give others a chance to take something they maybe didn't even know they were ready to give. You are a catalyst for helping them move on to something new with their space. New and fresh decisions come so much more easily when charged with new hope for what has been given up to make that space. It makes space in the giver's mind for the work of dreaming.
When you make an ask, you offer a continuation for something they have loved, something they've cared for--and they didn't even know that good thing was on its way to find them.
So who is really the giver here? Both. That, to me, is humility. It's a relationship, not a factor singularly controlled by one side of a connection or the other. It's what gives beauty to balance, otherwise balance is just a pause before the next thing happens.
Karate was born in Naha (Okinawa). Please think about that with me. They weren't a series of small, isolated groups that rebranded their fancy exercise program. They were neighbours, and they were a small and united people, on an island, and they were surviving. In a way, that's the whole world. So if I have something I can give, please ask me. Do me the favour.
"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
Tomorrow I will train with Goju Ryu friends in Peru and beyond thanks to a generous invitation to show up and do what I can. My Sensei offers me the same generous invitation to class each week.
Peter set me up in his office with a tv, pc, sound bar so it's super loud; a non-slip mat, and a fan. My wheelchair is right outside the door if I need to switch, or I can rest and watch.
I'm emotional about this. Friends I haven't seen in six years haven't forgotten me. I might cry.
I'm bad at math. Peru is only 1 hour earlier than EST. If I'm right Peru starts at 9am and I start at 8am. And if I'm early, we can do juunbi undo!
But mostly, I will cry. I've lost a lot of function since 2014. So I will play when I can and then I will adapt when I must! My Sensei has helped me grow.
Goju Ryu karate training is very strict. We take deep care in making sure we understand what is being said to us because it can devastate a person if you do the wrong thing.
We all value Higaonna-Sensei and wish him the very best, naturally. What's harder is continuing to organize ways to carry his message into the future with one unified and timeless voice. We will become his voice someday when he goes where we all go, so until then we can continue working to build voices in ourselves that we should choose to share with Higaonna-Sensei and expect he will feel that it is okay for him to rest.
Tomorrow is my first Spanish-language karate class. I am super excited! I'm sure my recognition has become weak, but they still day the moves in Japanese. I'll be okay!
My Sensei told me to go ahead and that tells me there is nothing that can take me down here. I have much to learn and must stay humble.
I am enchanted by Kokubo-Sensei because he's the first person I ever met who was Japanese, speaking Spanish! He also speaks English. Because I am as polyglot he is very fun and exciting to see.
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.
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.
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.
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:
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.
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.
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.
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.
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.
"Watch and Learn" is a thing; I'm a hypocrite if I could do that thing, but then don't.
If you have Ehlers-Danlos Syndrome and practice Goju Ryu karate, you'll need to practice adapting. I am a star at adapting, with plenty of life experience. What you do on the floor has to work in the street or it's of no use. Observing gives me an opportunity to watch and think about adaptations without trying to stay conscious and upright.
For both Monday's and today's appointments I did not get medically cleared by my physiotherapists to attend the once-in-a-lifetime Gasshuku (special karate group training) this weekend. The Gasshuku is with 8th Dan Paul Enfield, and it was the right call: my sacrum won't unlock. If I try to use my lower back I'll be very sorry for it later on. Throwing punches without full access to my hips is causing my clavicles and shoulders to sublux. Kicking with a fibula that won't stay in place unless it's taped, or suri-ashi (body shifting) with an ankle that won't stay in place, is not a good idea. All this, right after finally figuring out a way to reduce the blacking out from Dysautonomia. Any one of those things would be reason enough for any rational human being to sit the heck down.
But this is Paul Enfield, the man who brought all four volumes of Higaonna-Sensei's work to document Goju Ryu karate to the English speaking world. Sensei told me to come and observe, and usually I would be able to do that, and happily. PT suggested the same. But I'm deaf in the dojo, so it would be complicated and stepping into the dojo is already so emotionally charged that I can't imagine being isolated in two ways (movement; hearing). That's an error of thinking, though; I am never separated even when I'm just observing because my dojo family goes out of its way to make sure everyone on the floor is included.
I dread sitting out because I put everything I have into physical therapy to get back to karate. It feels like I'll never be done rehabbing, and it's true that I'll never be done with rehab. PT is a permanent aspect of life with EDS. But rehab without karate feels like I'm fighting just to live, and my quality of life feels pretty low since the third bout of sepsis. I also miss my port and the freedom to roam whenever and wherever I want to go.
It's hard on the psyche to go to the dojo and not physically participate. Sometimes I have to step out to cry, which is fine, but tends to make others worry. "It's just hard," I tell them. And it is. The pain of knowing my body will work against me if I try to use it is agonizing in itself. It's arguably worse than the physical pain, but because the physical pain affects my overall functional level (like being able to use the bathroom), I have to respect the pecking order of matter over mind.
It won't be forever. Sensei assured me that there will be plenty more Gasshukus. But my heart is in the dojo and I want to be doing karate. No matter how much I read or review while I'm physically rehabbing, it's no replacement for live practice. Not being able to practice also has a detrimental effect on how much I can learn through studying, too.
What I'm trying to say is that I'm upset when I don't need to be, and if I want to be a hypocrite I should stay home and not find ways to adapt what I'm seeing. And yet, I feel pretty rotten. But even when you feel rotten, you should go to karate.
At the dojo I like to hit the Makiwara and will happily spend time there honing my punch delivery until someone gets worried that I might get hurt. Of course I'll get hurt, that happens in Makiwara training. But I will also get better at minimizing my effort, maximizing my output, and localizing my target. I would much rather get hurt on the Makiwara than in the street. My Sensei has taught me how to properly strike it, how not to, and to recognize any cues from my body that say it's time to stop. I have promised from day one to do my best to pay attention to my body.
Before I started karate I did a lot of rehab work in physiotherapy, and I also played a lot of Wii Fit Plus. I love that game and wish I had room to play it now. Wii Fit Plus as "Wii-habilitation" helped me lose weight, improve my balance, timing, stamina, and mindset. It's quite the game!
For the past three years I've had to do a lot of rehab for a lot more reasons and I've missed that gamified training. Today I got Fitness Boxing on the Nintendo Switch. Either the synchronicity is off in the accelerometers or I truly have no rhythm. (Sadly, my Joy-Cons have just exhibited "Joy-Con Drift", a problem that requires me to send the unit in for repair.)
With fitness boxing the trainer's avatar lifts her back foot to throw the punch. In Goju Ryu we stay on the ground because that's where we generate our power. The game seemed to have no trouble with my alteration.
Having just left the Rehabilitation Technology field I'm back to being my own only Assistive Technology patient, so it's just as well that I'm finally getting back to karate after a very long time and finding new methods for supplemental training.
There is a grid in the game that shows all the movements it can track: basic body movements and basic punches. We like the basics in our style, I'm happy to stick with those during personal training time.
The hardest part is keeping my legs and hips steady beneath me while I throw the punch. The second hardest part is stopping before my elbows hyperextend or dislocate. I don't have much trouble with my elbows yet and I don't plan to start now!
Last week an opportunity came up to test my Goju Ryu with an Isshin Ryu karateka. I enjoyed seeing the dynamics of both and just how much power can be generated by a small movement. A simple back fist can be devastating.
Both of my shoulders stay in their sockets most of the time and I haven't had a major shoulder dislocation in several months. If I punch the way I've been taught there should be very little risk of a shoulder dislocation because the power comes from the legs, hips, and back.
As longs as I do it right -- that's the catch.
The more training, the more opportunities to get it right --
that's the work!
This game is a jackpot for the basics of boxing. I wish my stepdad were here to play with me, he was a boxer and would have liked the game. He was very supportive of my karate, too.
We can only do so much, but we can often adapt beyond the limits we first perceive.
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.
I'll be ready when it's time to test or I won't test, but having been 2-kyu for over a year, it's heavy on my mind. At least once per day I get anxiety about the fact that I'll eventually test for shodan (black belt). I worry about how the test will look, what will need to be adapted, and what Higaonna-Sensei would say about my performance. I tear up thinking about it because I cycle among different ways of looking at it:
Everything I adapt will be to something that would work in the street. If it wouldn't work in the street, it's not an adaptation and needs more work, which takes more time.
The day my Sensei decided he would take me all the way to black he told me he was going to hold me to the same expectations as everyone else. I trust my Sensei, and he won't let me slide. To let me slide would be to give me a false sense of security, which would put me in real danger.
While I can't test to the level that able-bodied people can test, very few people with Ehlers-Danlos Syndrome ever approach martial arts at all, and I don't know many able-bodied friends who would practice karate if they had the challenges I have.
A shodan is just the mark of the most basic self-defense techniques being loosely known. It takes a lifetime for them to be truly undertstood and applied.
The real job of the obi (belt) is to hold your gi closed and that's it, so the test shouldn't matter.
Things that make me nervous: I have a terrible time remembering bunkai, and I'm slow on the uptake to learn new techniques, especially complex ones like joint locks or grappling. Class moves fast in the dojo and I don't have opportunities to practice outside of the dojo. Being pretty much deaf on the floor, I'm recently becoming aware of how much incidental learning I miss, and it makes me panic because there aren't many opportunities to follow up. Exhaustion is also a factor that hurts my memory and follow-up. It would be different if I were taking notes, or working with subtitles or an interpreter.
I'm so focused on staying conscious in the dojo, and on managing joint pain and dislocations, that it's hard to concentrate on anything but the next move I have to make. That makes it good for me in that I have to stay in the moment, in tune with my body and with my partner. It's great exercise for my body and a paramount stress buster. But it also keeps me from higher thinking about applications, similarities to other moves, connections with kata, and so on.
It's time to deal with these matters but I'm not sure how to proceed, besides talking to my Sensei about it. Such puzzles aren't new, they've been present since I started karate. But they hit me harder now that I've finally returned to the dojo after a long absence and I am fighting a whole new battle to stay functional, a long war against failing health.
I did Florida Special Olympics coaching for Track & Field and Volleyball. I did volunteering in New York for Swimming. SO and Gliding Stars (formerly SABAH) are some of the best athletic endeavours I have ever undertaken.
I will once believed we could figure out a good way to give everyone the exact same opportunities, if only humanity thought hard enough about how to do it.
Having later been diagnosed with a different genetic condition where one mutation unpredictably affects countless characteristics (pleiotropy), I now understand it isn't possible to integrate. There is no contest; nobody who wasn't born with such a steep uphill climb could ever compete with SO athletes. They are extraordinary beyond anything the mainstream could ever conceive. Their accomplishments are cosmic. Therefore, we'll have to settle with treating everyone with respect and human dignity, and if we ever get that far we can look into this again.
There is no one way to say NO. However it's said, it must be abundantly clear, and repeated as many times as it takes. Body language, facial expression, and speech must be in clear agreement.
This video is alarming, as it should be. It's presented in a positive, sterile-white background, but the subject matter is red-light serious. We shouldn't need videos like this; but since we do, here we are, and it begs for discussion on a hundred levels.
Person 1 crosses a physical or social boundary (or almost does).
Person 2 indicates NO through clear body language and/or words that point out the boundary.
Person 1 adjusts their behaviour accordingly.
Saying NO doesn't have to be loud or aggressive, it needs to be clear.
Whose responsibility is it to teach NO?
Can I live with it if I let him take a feel so I can go on with my day? If I say NO I can protect myself, but without addressing it directly, he may go on to do the same thing to others Can I do anything to stop him, and what will it take out of me to fight that battle?
Saying NO is risky and that sucks.
A woman* may be accused of overreacting, misreading. What's worse, it can be dangerous to say no. That danger may be physical, psychological, social, political, and on. It can cost her job and even her future job prospects, and that sucks. She is forced to choose: would she rather live staving off the psychological impact of covert (or overt) sexual assault? Or, would she prefer to live with the social implications of her NO being ignored, or blown out of proportion, to the detriment of her future, safety, and livelihood? That sucks. That's a shit choice.
In the #MeToo movement women come out of the woodwork once an assailant has been exposed. These women have missed thousands of opportunities to protect themselves and others, until one finally did speak up to expose the abuser, often at the cost of her own reputation and/or livelihood.
NO vs. "Yes, but...."
Several of the video's defenses lack a transfer of psychological power, a posturing of NO. The examples appear to say, "yes, but", as in, "Yes, we can take a selfie, but you can't touch my butt." This doesn't address the fact that groping is wrong and it allows the social interaction to continue after a deliberate action had to be taken to prevent sexual assault. She protected herself, but if he tried to grope her, he will do it to others.
Having to step backward twice to avoid a hug is unacceptable. In the video she verbalized, "I prefer handshakes" and he stopped, this is another clear NO and a desirable outcome for her, but
Having to keep elbowing someone's arm so they don't grope you is unacceptable.
The hugger has either ignored or not gotten the message. The onus is on the woman to react in self-defense. If not, she must live with the humiliation or learn to block it out. She must to continue self-defense until it stops by stepping away or verbalizing, "hands off."
Everyone has limits but not everyone knows what they are.
Eventually the woman in the video gets fed up and takes the man to the ground. Deciding when and how to react takes practice. Every situation is different and quick thinking is always best aided by prior practice.
These are just some preliminary thoughts, but a thousand more come to mind.
Know your limits and options before you need them, and hopefully you never will.
Take a self-defense seminar course, even if you don't plan to join a martial arts school. Make decisions when you have time to think them through in a seminar, instead of on the fly in an awkward social situation.
*woman, or man, or anybody in between. As the video intended the audience to be "every woman" I addressed it that way.
I won't say "it doesn't happen in my dojo" because no one thinks it happens in their dojo. But I will say that we go through specialized preventative training, and that, despite my own hypervigilance on the subject, I have never seen it in my dojo. I hadn't realized it surely happens in martial arts because I have never seen it happen there. I have also been sheltered by having only ever practiced in two schools.
The dark side of karate includes "grooming", the act of establishing a relationship with a child to ultimately enroll them in a sexual or otherwise abusive relationship for the gain of a maleficent adult.
A child has no basis for comparison. They are completely helpless against a predator. An adult predator might spend years conditioning them to believe that the abuse is natural, necessary, out of love, wholesome, or anything other than disgusting. An adult child of sexual abuse may not recognize that they were abused until well after a statute of limitations let alone be stable enough to go back and face their abusers.
In our school, for example, we have specialized training required to work with children. A large TV shows cameras during all classes and parents are encouraged to watch. In training for work with children we are taught to spend no more than a few seconds on a correction, to stay as hands-off as possible, and to have someone of the same sex as the student tie their belt. (This is not to say that same-sex abuse doesn't happen, but that this precaution apparently minimizes the risk.) The school invites all students, parents, and staff to training events on prevention of human trafficking and sexual abuse, taught by qualified representatives of that field.
As a Catholic I am no stranger to the story of grooming by people in positions of power. The news is filled with discoveries of sexual predation from the church that ruins the lives of its victims and their families for generations.
Hamlet says, "do not spread the compost on the weeds/ [t]o make them ranker" (3.4.171-173). Briefly, he means, don't add trouble to an already bad situation. I don't know how to acknowledge or discuss these unspeakable abuses. Given parts of my own history, I have an added sensitivity which often gets in my way. But I'm trying to make sense of what I can do to get a foothold of this problem.
When I hear about these abuses it messes with parts of my identity. What can I do as an adult, non-parent, Catholic, survivor, martial artist? What comfort, empowerment, or comment can I offer without adding to the Internet's weeds? Not much thus far: there are no excuses or valid reasons for this, anywhere in the world, ever.
I am seldom without words, and I feel strongly compelled to say something, but I have no idea what to say. Here are some preliminary thoughts, which fall egregiously short:
1. If I see what appears to be child abuse, I absolutely will report it.
2. If I come upon an adult child of abuse, I will believe them and behave compassionately toward them.
3. I will refer to every resource I know to help someone in crisis.
4. I will maintain confidentiality for absolutely as long as it is safe to do so.
5. I will take care of my own self separately.
6. I will not participate in grooming.
7. I will not internalize the guilt or the abuse in the Catholic church--or anywhere in the world--as a failure on my part, but I will accept personal responsibility of taking steps to not contribute to the abuse, and to speak up or stop it when I see it.
8. I will take steps ensure that my time with others is as safe and positive as it can be.
Abuse happens everywhere, and it seems particularly rampant in the church and in sports. I will do my part to be informed and aware.
