Saturday, December 22, 2012
Thursday, December 20, 2012
It looks like I'll be headed to Gallaudet in the spring to learn ASL more fluently. I've been signing since I was 8 but stuck between the Deaf and hearing worlds. There is no Hard of Hearing world in society. If you're Hard of Hearing, the Hearing say you're Deaf and the Deaf say you're Hearing. Unilateral deafness, which I have, is none of those. It's unbalanced and doesn't make any sense.
Which has a higher cost-to-benefit ratio: listening too hard, or not listening at all? Even though I have an implant, the natural hearing part of my body is unilaterally Deaf. I'm 30 years old. I have always been unilaterally Deaf. I'm defining Deaf as unable to use sound. I've relied on ASL all my life. Why am I struggling? Why am I still trying to convince myself that I deserve to just move on with my life, that ASL is a valid way of existing, even if I can hear sound?
This evening I called my brother and explained that I still want to go to medical school, but I'm afraid of getting sick. So until I have more information, I'm just going to learn ASL because it will help me perform at work, and I'll be able to use it in school. He didn't realize that I have been using interpreters for years. It's incredible to think that I've done that well, that my own brother had no idea! One of my favorite things about my deafness that makes me laugh is what my brother calls "The Honk." If it's quiet or I haven't spoken in a while, and someone speaks, I will very loudly honk, "HUH?" He always laughs and mimics the sound, and I give a great, big, belly laugh.
Don't get me wrong, I'm glad to have been treated pretty much the same, but countless times in my life I've spent unable to keep up with conversations and arguments, met with, "who are you talking to, the mother ship?" when I made odd sounds to self-soothe. People say "never mind" far more often than they explain things to me, and I have to say, "No, please explain it to me."
Today, I'm a stronger self-advocate. In karate class I say, "I'm sorry, please say it again--not more loudly--but more slowly and clearly, so that I can understand you, too. I'm interested in what you're saying, and I don't want to miss it." My fellow students are very understanding. Some do forget, or don't quite know how to speak with someone with deafness. Those are the points that trip me up. Do I interrupt again? Do I interrupt as many times as it takes? Why do I choke with upset when I ask, they oblige, and I still can't hear?
I can't just pull the person aside to practice it at the end of class because the auditory dynamics have changed that way. I don't know how to replicate what I need because I have never needed to talk to myself. I don't know if how people talk to me is louder than how they talk to others. I don't know when I am whispering or shouting, and I never have. In an open space like the dojo, or outside, in a gymnasium, I can't hear a thing. One sound may as well be another, because although two distinct sounds may be different wavelengths, neither means anything in the presence of the other.
Does it take two surgeries, an ossicular implant, and a hearing aid, to realize I'm capital-D Deaf, to accept that I have unilateral Deafness, that the sound has never made any sense, and never will, even when it's louder? At what point do I give up trying to be "Hard of Hearing" and just accept that I'm Deaf? Why do I worry about not being Deaf enough? I can't hear, can't keep up with an oral conversation, fall mute mid-sentence, I'm perfectly brilliant in writing and online chat, there is no question.
That said, I am used to fighting Deafness, finding ways around, sneaking through conversations by saying very little, avoiding the phone at all costs, lip reading, asking people to repeat themselves, taking reams of notes because I can't make sense of or remember what I heard.
My hearing loss is conductive, not neurological. That means sound resonates just fine through bone, and I could get a cochlear implant. However, I've been Deaf all my life, and the sensory deprivation in that region of my brain has left it under-developed. It doesn't know what to do with sound because my brain never learned that function on the left side.
But with a cochlear implant I would be listening to sound from the crown of my head and throughout my skull, rather than through my ears. I am so overwhelmed by sound already that I think I'd rather not put myself through that. i understand that cochlear implants have their place, but so does ASL. This is where insurance falls short: they will pay thousands upon thousands of dollars for cochlear implants, but nothing for speech therapy and ASL to accommodate Deafness.
When I got my ossicular implant I asked my surgeon if there was any kind of program out there for the newly hearing, because I was constantly overwhelmed. That was several years ago, and the sensitivity has never diminished. At times sound is so painful that it hurts all the way down into my throat.
So why write this in my karate blog? Well, my dojo is where I spend the majority of my week, and it constitutes the largest percentage of my social life. At work I don't speak, and at home it's just my wife and me. She is learning sign too now, and it has brought us much closer together.
I feel that ASL is my natural language because I switch to it when I fall mute mid-sentence. I switch to it when I am overwhelmed, afraid, comfortable, excited, sick. In post-op, I always sign instead of speaking while in recovery, and I never know this until later. I used to think that I switched to ASL because I liked speaking another language. But I speak several languages and I don't switch to them for comfort. I switch to those languages for excitement or expression in ways that American English cannot offer.
If I embrace ASL, I will either have to teach my friends and the people around me, or I will have to make new friends. A little of each will happen, in all reality. But wouldn't it be neat if I could just focus on karate, rather than trying to lip read the sensei or senpai in the mirror? Wouldn't it be awesome if I could just be ready to work with a partner instead of having things explained to me several times?
If I embrace ASL, I will be accepting the fact that ASL has embraced me. I have seen a lot of great concerts and comedians, attended lectures, meals and social events, because I have had ASL to help me enjoy it. Perhaps I feel that I am abusing the privilege because my other ear is hearing. It's not an altogether absurd feeling to have.
If I embrace ASL, I can take my hearing aid out. I could potentially get rid of this ridiculously painful and chronically overwhelming ossicular implant. However, if I do that, the nerve will die from disuse.
Hearing is a beautiful thing. I love listening to sensei count to ten when we do drills. For some reason it's very soothing, it helps me focus. I love hearing my breath when I pant with exhaustion. I rely on the sounds of my bones to tell me whether I am in place or hyperextended. I would miss those things. Can I use my hearing to enjoy those sounds, but still allow myself to use ASL 100% of the time, even if I am speaking? What would it mean for Karate if I decided to choose to not use my hearing aid anymore? I have seen a blind man perform a double lutz in the ice rink. I'm sure I could be successful. Without a doubt, my dojo will not leave me behind.
Several students have made a commitment to helping me through for as long as I am willing to help myself through. If everyone knew how that felt, there would be no war. They are an incredible bunch of people, and I am so much stronger for knowing them that it's bringing me to tackle these enormous questions about who I am, how I identify, how I choose to live and communicate. And just like karate, I'll take it just a little bit at a time, starting with an ASL course, presumably at Gallaudet.
Check out "Through Deaf Eyes" at PBS:
And on Netflix:
Saturday, December 15, 2012
I have another story of what I learned from Gasshuku 2012.
The myth of the typical body type is that no such animal exists. The most simple organisms can be distinguished one from another. We accomplish beautiful things in our lifetimes by drawing on our differences. We become stronger, smarter, healthier, and happier because our differences from one another teach us more about ourselves.
This morning I am visiting my family for "micro-Christmas." Every year my nuclear family gets together outside of the holidays, which frees us to be with the families of our significant others on the actual holidays.
Karate has become so central to my life that I get heartbroken when I miss a class or the schedule changes. It's so curious, how naturally and completely I have taken to this activity! But I have not excused myself from practice just because I am not in the dojo. I take a break and practice at work. I practice my steps when I walk, no matter how funny it may look to other people. Sometimes I laugh, too!
As someone with chronic illness, chronic pain, and unpredictable injuries from one moment to the next, the ability to use my body has been a much-needed respite. For years I have been trapped in illness, fear, denial, restriction, survival. When I got diagnosed I took full responsibility for my health (while my wife protected me from taking myself too seriously) and learned with diligence all the things I couldn't do safely. I relearned safer ways to do things I needed to do: get out of bed, yawn, eat, write, go up and down the stairs, turn doorknobs, millions of little things. Before my diagnosis I had been running every day. With a steady and compassionate voice my physiotherapist informed me that my running days were over. I was devastated. I still haven't gotten over it.
Karate has given me a new framework for learning about my body. In the world of disabilities we focus on our strengths as much as we care for our weaknesses: "What /can/ I do? " It's a series of discoveries about balance, consequences, recovery, interdependence, personal development. I'll spare the details as they don't really fit the scope of this entry.
This morning I worked with what I have learned about my body and about karate. I am working to integrate karate practices into my daily physiotherapy routines. It's a little much, I really feel that it will be best to give each activity due time and attention. They just correspond so nicely that doing them simultaneously is attractive!
I worked on:
Geki sai dai ichi kata
I want to focus more on:
Range of Motion
Hip placement and movement
As I practiced I thought about who I was learning from. Ernie Sensei is tall, thin and fast. Tony Sensei and Gene Sensei are modest in height with solid builds. Sam Sensei is tall and sturdy. Laurel Sensei is petite and solid. Nakamura Sensei is tall and quick.
I have heard different karate practitioners mention different physical challenges that they are facing with age: old injuries, stiffness, sciatica, metabolism, and on. No matter how much pain I am in, I become upset when good people hurt. It takes a lot of energy to stifle my sympathy. After weeks of contemplation I finally gave in and asked Julie why it hurts me so much to see other people hurt. Without hesitation she said it's because I know how it feels. Lesson: I do not have the emotional intelligence that she has, and can ask her such questions earlier, so that I can move on to other things. I feel I can potentially be useful by being myself in this way: some people say I am an inspiration because I keep going despite the pain. But who inspires me, who is in pain? The list has grown to include the Masters of Goju Ryu karate.
We all do the same moves. Our bodies are shaped uniquely, occupying space independently of our fellow karateka in order to maintain uniform timing. We learn the moves, but learning what our bodies need to do in order to perform each move requires practice. We have to figure it out in our own ways, and rely on Sensei to keep us lined up while we learn how our bodies deviate.
My body is extremely different. It's a constant effort to cope with that. But we are all doing the same thing, figuring it out. The Masters showed me that as we age we will relearn, so in that way we are all on the same plane.
Although I missed this morning's class, I have not wasted the time.
Monday, December 10, 2012
I agree with my fellow karateka: Tony Sensei has a way of explaining things that encourages, clarifies, enlightens, strengthens. I don't know where he learned to communicate in this way, but we are all learning more from him than how to punch and kick. Parents are learning to play with their children. Kids are learning to look after one another.
Everyone is on a journey, and we all put a lot of faith in our Sensei, along for direction, soaking in his regard for the progress of every single individual, while keeping track of the values and practices of goju ryu karate. That's a lot of pressure!
Where must a man come from, that he may be Herculean of character? And, why does not everyone seem to be eligible for such dignity? How does God, or hap, decode what is in us, which has no known genetic program to follow?
Here are a few reasons why I stumble over my own thoughts:
-When I was late, he wanted to know why.
-When I stumble, he checks on me.
-When the practice is complicated, he puts safety first.
-He gives us time to learn in our own ways before we practice as a class.
-When a student is tired he pulls just a little more out of all of us; we work together.
-I never stand still, even if I can't do what everyone else is doing, and he encourages me /with enthusiasm/ to change it up!
I never feel alone. Even when working independently I am encouraged. We all watch each other, and when one of us stumbles, the rest of us quietly celebrate their next attempt.
Because of my hearing I only catch about 40% of what Sensei says, so it takes me a while to figure out what is happening, and I have to rely on my physiotherapy work to understand why it works that way. I love when Sensei repeats a drill 3 or 4 times until we work out the kinks and unify as one class. It gives me time to adapt, and it takes that long for me to put it all together. Karate is no race, but full inclusion is a commonly overlooked principle of having a student with a disability.
Taking the full inclusion principle one step farther, he tells everyone the same things as I have learned about having limits, about learning to work effectively within those limits. In such situations I have the upper hand on my classmates because I have grappled with limits my whole life. I have learned to deal with feeling ashamed when I couldn't keep up, or when I got upset because I was hurting and couldn't communicate effectively--things we all go through on various levels, but which I have gone through a lot. My point: by teaching that "everybody has limits, and that's okay," I find myself feeling stronger. In that sense, I am in a place to be compassionate to others as they figure out how to cope. It makes me feel I have value.
Tonight was a tough night. I've been struggling since Friday with various issues of laxity and temperature. Today, I would not be bested. I am in a lot of pain. I keep finding myself in that had space where I fear passing out even though my fluids are within reach. To be safe I stopped twice to rehydrate and the second time I just kept my pump on. A caring shepherd, Sensei did not leave my suffering to bleat and carry me off. He came over and helped me back into the fold, gave some encouragement to finish out the night, and went right back to work.
When I get so sick I become terrified immediately. I can't think, talk, see, and though I am good at staying with my breath I still feel a sense of panic. It comes from a summer of going into shock every single day in the I.V. station before I got my port. Now iv don't need to panic anymore. The fluids will restore me and I will equilibrate, if I can just stay calm. That Sensei accepts it as no big deal helps me not feel like a freak, a disturbance, or worse, a weak person. Being sick is hell on earth. If there were a cure I'd go right for it. But there isn't, and there is work to do, and I am there to be a part of the class. So while I have time to care for my health, this is not the time to let it trip me up. Such worry is not useful. Besides, I want my fellow karateka to understand that I take my welcome in the dojo seriously. That includes thinking honestly about whether or not to stop for the night, because if I collapse it will rattle the fold. But I took a rest, restored my fluids, and went back in. I'm glad I did! In the blink of an eye I was smiling again, taking things lightly.
Being able to bow to my fellow students at the end is a ceremonious act that gives thanks for their patience and kindness, for their hope in me. I know nobody is exactly sure what Ehlers-Danlos Syndrome means), but the definition is irrelevant. The commitment is what matters. "We all get hit with something eventually."-Sue Bard
And then we come to what people share about themselves on the bench. I would never share the specifics, but it deserves mention that people are coming from places of pain, anxiety, hope, fear, perfectionism, and we are all doing our best. In this way, we reflect our Sensei.
Suffice to say, when people talk about their experiences in karate, we are coming from a common core place of ambition, improvement, self-respect. Some struggle harder with these concepts than others and I ache for them. But like I do, they want something better for themselves, and of themselves.
Beautiful words come from our time in the beautiful dojo. What a refuge it is for so many. What an anchor is our Sensei.
Of course we talk. With such good energy, how can we keep it to ourselves?
Saturday, December 8, 2012
Gasshuku 2012 with Sensei Tetsuji Nakamura was hosted by Warriors of Grace Karate in Severn, MD, from 30 November to 2 December. Over 40 adults and 24 children attended, accommodated by the space in Meade Middle School’s gymnasium, while further instruction took place at the WoGK dojo. Family bordered each practice room in a halo of hope and encouragement, with water, fruits, and towels, to support the physical wellness of students. For intellectual growth, Sensei Jeff Mann brought his newly published book, When Buddhists Attack. Spiritual growth was evident in the resilience of sleepy and sore karateka, led by Nakamura Sensei’s every deliberate and practiced instruction.
For karateka, it was a valuable experience to see Tony Sensei at practice among his fellow Masters, namely, Tetsuji Nakamura Sensei, Gene Villa Sensei, Ernie Brennecke Sensei, Chris DeWet Sensei, and Sam Larioza Sensei. To see Tony Sensei at practice reminds WoGK karateka that while we work among ourselves, we are also developing deep and meaningful relationships with our global community.
With Senpai Carol’s careful planning and tireless efforts to run the entire weekend smoothly and on time Sensei was able to focus on strengthening himself, an effort that will refresh himself and his lessons at the dojo; in helping himself he will help the rest of us. A room full of black belt karateka broadens the impact of one sensei on his dojo: by helping each other, we help all of us. In that spirit we learned to help each other; when we work in pairs, we must focus on the growth of our partners, as they will focus on us. While we help our opponents succeed we are learning by observing, and helping by thinking critically. In doing so, we fulfill our basic dojo kun intention: bring out the best in ourselves and others.
Mou Ichido (once more) is how Nakamura Sensei became a world leader, building stability and experience through unending practice. Perhaps repetition seems monotonous, but practice is the point. Early in the next week, Ernie Sensei broke down the basics and reinforced what makes them effective: weight shifting, body shifting, The eight body motions (up, down, circle, circle in the opposite direction, rotation, hurling, whipping, vibration), changing timing, technique, angles. With so much to think about, the mou ichido principle gives us endless changes to the way we do things, countless ways to improve.
At all skill levels a recurrent discussion was, why do we practice kata? A lifetime commitment to repetition teaches us that the moves we make have power and purpose when done carefully, deliberately, and accurately. Though Nakamura Sensei moves with blinding quickness, he practices moving in a relaxed way because a stiff body cannot move the way it needs to. Further into the subject we took in demonstrations and practiced techniques that are rooted in basic foundations of the kata.
The banquet at Hella’s Greek Restaurant on Saturday night was arguably the most developmental aspect of Gasshuku 2012 (and inarguably, the most tasty). Sharing a meal, we talked and laughed, making new friends and sharing memories with those we love. We remembered our founders, Morio Higaonna Sensei, et al, with reverence for the gifts of care and regard they have given to the practice of karate for our benefit.
A sturdy foundation is everything. Without it, in karate as with life, it takes too little to be knocked off our feet. Foundation reminds us that we are delicate. Our Sensei reminds us that we are resilient. As we go through our lessons together, we recognize that we become powerful by helping one another as we have received help to become who we are. We become responsible through mindfulness. We become excellent like our Sensei through unshakable regard for basics.
Wednesday, December 5, 2012
It has only been a couple of weeks, and already I am changing.
Because of karate:
I sleep better.
I focus on my objectives better.
I smile more.
My proprioception has improved.
I think a movement through from beginning to end before carrying it out, and more successfully.
I have more self-respect.
I process my thoughts and experiences kinesthetically, and this, more completely.
I take pride in my gi.
I enjoy the company of my fellow karateka.
I grow by helping the people with whom I am working to be successful.
I feel welcome at the dojo.
I feel that my dedication is appreciated.
I laugh harder.
I work more methodically.
Right now it is easy to go on because my excitement is stronger than my doubts. But I have doubted myself in class, and simply tapped out, receiving no questions and no disrespect. Nobody judges me. Instead, I am surrounded by people who want to be a part of my being successful, in my own way, as much as I want the same for them.
Do you, dear reader, understand what this means? It means the same thing as a parent who horses around with their child, with a teacher who challenges a student to work harder. It means I am safe, the dojo is safe, and the people around me are safe.
Our dojokun means everything to me. I pinned it up at work on my desk and use it for brief zazen throughout the day. I also do kata each day. It gives me a break. When I do karate, I'm not thinking about anything else.
Even when I can't safely do something I find a safer alternative that activates the same muscles, if I can.
Tonight we did some grappling with the head in yoi and footwork. I learned that I can do much more than I or anyone expected. I attribute this to the very controlled and narrow range of motion in goju ryu karate style. Everyone I work with is understanding. I think not everyone enjoys working with me because I have so many special needs, but I think it's good practice for them to have to modify the programmes to which they are accustomed.
Sensei watches out for me with every new task. I always have an opportunity to try, and instead of no, he says to be careful. He gives me a choice and that is all I ask. I will not make the right choice all the time, nobody does! I am okay with that. I don't feel singled out when he does this by calling across the dojo. I don't feel embarrassed, diminished, or prohibited. I feel protected, respected, and included, because my Sensei wants to see me grow better and stronger, and seems to understand that treating me as delicate is not helpful. I spend the rest of my day feeling like a porcelain doll. I need a place to go where I will be allowed to take a kick to the head in good company. The solution was not to bar me from the exercise, but to correct what got me injured. I'm going to be sore tomorrow but I will be happy, and you can bet your bottom dollar that I learned a lesson!
After class I go right to my fluids. It takes a few minutes to get set up but nobody worries or watches. Everybody is always doing something at the dojo, nobody has time to judge or criticize. The is only time for work, laughter, kindness, and learning.
Everybody knows my health is crap, and yet everyone assumes my intelligence and strength are otherwise equal, which is true. That's perfect. That never happens. Granted, they have never seen me on a bad day. But when they do, I will still be lifted up, still be expected to do my best. That is what they will draw out of me, that is what they will get.
Is it really that great? Can such a place really exist? My physiotherapist said, years ago, "I want you to know that there are good people in this world." I have earnestly sought those good people since that day. My PT is always right. My dojo is the jackpot!
Tuesday, December 4, 2012
Tonight was the first emotionally painful class. I watched my classmates grapple with one of the world's leaders. I didn't have anything to do, but naturally it wasn't acceptable to stand there. I worked on the kata and took out some of my frustration on a padded punching post. Rather than be angry I channeled that energy into getting focused.
Reminding myself that I was mostly dead all summer, I gave myself some kudos for showing up, and decided not to waste a moment of my welcome at the dojo. I love it there.
I just want to do karate all day! But I'm trying not to love it too much in case I get sick or hurt. Tonight's class reminded me of the reality that those things are inevitable. I know that just trying my best makes me as successful as I'm going to get. Sometimes that just isn't enough, which brings me to the fine line between determination and responsibility.
Monday, December 3, 2012
I don't know what we'll be working on tonight but I have been studying and practicing gekisei dai ichi kata all day. I hope we will do some conditioning because I haven't done much all weekend in terms of serious athletic work.
Sensei Nakamura and Sensei Villa visited our dojo this weekend, along with other incredible people from around the world.
When I was invited to practice among them I thought carefully, and decided that although it would be an enormous privilege, as a white belt I could do more for the dojo in service than in karate practice. So I charged up my camera and took 700+ photos. Hopefully everyone got a meaningful photo for their scrapbooks.
A dinner banquet was held on Saturday night at a Greek restaurant. Julie joined me and I had a good view of the head table, where our guests sat, as did Sensei Tony. Seeing him practice as a student reminds me that teachers are also students.
Everyone I have met is far more gentle than the Bruce Lee stereotype. Kindness and respect trump all other connections we have with one another.
It's still very early in the game for me, but I have really taken to karate. It is always about what I can achieve as an individual. No one is ridiculed or disrespected for being less than an expert. Quite the opposite is true, I have exchanged at least a smile with everyone else! The fact that I am still writing these assessment-style reflections suggests that I am really dumbstruck by the warmth of karateka. I've just never taken on any physically social activity in my life, so it's very new! At my age it should really be old hat, but for many reasons this is my first go. And I love it!
I had to help my precious cat, Figaro, go to heaven over the weekend. There is nothing more we could have done here and I won't let creatures suffer. As I watched the blood drain from his paws while he flushed from pink to white I learned that my no-suffering rule is a compassionate strength; I have been through so much loss that I'm used to saying goodbye, especially to the sick. Sometimes comfort is all I can offer. For my little kitty, I could offer a little bit more, and let him go from his pained body.
I got Figaro when I was 19 and he was the closest thing I'll ever get to being young and carrying a child. In spite of my little baby's departure I didn't waste a moment of life with him and it makes me feel good about my own character. That reflection helped me get through all the social interaction at the banquet. That is, if I were wretched, I could not have raised such a beautiful creature that "dog people" are still writing and calling to tell me that my Figo changed their minds about cats. Of course I wish he had lived longer than ten years, but those years were awesome. I miss that stinker and his kisses.
This entry is a bit rambly, but not every swing of the bat is a home run. Off to rest, and then to the dojo!
Wednesday, November 21, 2012
I will strive to bring out the best in myself and others.
I will use common sense before self-defense
and never be abusive or offensive.
I will strive to have patience, kindness, gentleness and self-control.
Everyone says this meditation together after practice. From my spot at the end of the line where everyone begins I have a clear view of my fellow students, all in a row, perfectly parallel to one another. Sweaty and satisfied, the moment is peaceful. No one is sore yet, we are all out of breath. None of us is in a rush to move on to the rest of the evening--we have not been dismissed yet. The feeling is connected and good.
My muscles are telling me that I've done a great job, and they're thankful to have been activated. My joints have little to say on the matter, but I have done my best to protect them, minding my range of motion and stopping when necessary. My head is clear and I am still hydrated because I took lots of breaks to make sure such was the case.
Sensei had us go back and forth across the dojo practicing different drills. He worked us hard because the Thanksgiving holiday imposed a long weekend on the class's routine. By the end of class I could feel the sweat dripping from my hair to my shoulders: it's raining me!, I thought. A fellow student stayed late and taught me the three basic blocks. I taught her the physiology of muscle activation, lactic acid, and the Krebs cycle; and about the golgi tendon organ's involvement in stretch reflex. Fair trade, I think. The social interaction was fun, and I enjoyed sharing my world with someone else, who in turn shared theirs with me.
Hearing impairment brings with physical activity a whole extra sense of urgency to keep up with the class. I can't hear what's going on, and suddenly everyone is moving into a formation that I don't understand. Reading lips is hard enough when a person is right in front of me. I simply haven't figured out how to read in the mirror while watching the demonstration at the same time. Then, in zero time, I have to process what I've heard, convert it into my own sense of what to do with my body--and by the time I get to this point I've lost 90% of what was said. But I'm here to have fun, and it's fun! I laugh, ask for help, smile, and have a good time. Something inside me knows I won't be left behind for any reason. That's everything to me, meaningful, more important than hearing and parroting.
I'm tired, happy, throbbing, wound up, and grinning from ear to ear. This is going to ache for days, but it will be healthy muscle pain and not joint pain. This is real accomplishment, and I've missed real accomplishment.
Monday, November 19, 2012
Tonight was my first karate course. For five years I have grieved my daily running regimen, suffering everything from an occasional wince to a full blown nervous breakdown, time and time again. It has been a medical nightmare. Since I first discovered that I could interact with my own body just four months before diagnosis, I have longed to own it, shape it, make it look like me, make it feel like it was mine.
I'm super sore but my head is in a happy place. It was a scary hour and a half, but I felt safe and looked after.
Sensei is an incredible soul with whom I connected immediately. I simply cannot imagine myself under another instructor. What he has overcome resonates within the frequencies of my own outcry for a sense of connectedness with the world around me. I cannot tell now whether I will even be able to grow as a pupil, but I wish to know him forever. Anyone who transforms colossal pain into leadership and education is a remarkable person. That includes me. So I'll do my best work what I have learned from my PT, listen to my sweet wife when she tells me to rest, and challenge myself to be healthy as much as possible.
I finally feel a shift in my attitude, a turn of my disposition away from work and toward a healthier me. I have no idea what to expect of my pain level in the morning, but it will be of my own will for a change! For years I have not waited, but actively sought, a place where I felt like I could safely grow into what I now know of myself, where I could safely learn to interact, and where I would be in the company of people who will not shy away from danger. I think the people at this dojo have understood danger, and have understood a dream deferred.
Another mention: the students! It's as though I had walked into a garden of hope, where the acceptance by them led me to accept myself. It's hard to look in the mirror and see what has happened--what I have let happen to my body--over time, as I have struggled to stay alive. When I get sick again, I will be in the same gauntlet where I cannot care for myself, cannot feed myself, and cannot manage my day-to-day life. But if I can plant my energy in this soil where the other students have moved over to make room in the bed, I will be a stronger flower with stronger leaves when the winter comes. I use this metaphor because a garden is a welcoming place, and every student made it a point to say hello.
Yes, this is a healthy way to spend my time. Surely I will get hurt a lot, but I get hurt a lot anyway. At least I have something to do with my body, other than hate it, which is not useful.
The biggest challenge will be my fear of moving. I don't know whether that's because of the way I grew up, or because of EDS. Maybe half-and-half. It is so important to do this work in a safe environment, where I am completely removed from all distractions, and under the expectations of effort and commitment. On the flip side, I also need to heed my PT's advice, and rest. So far, I'm doing a good job of that. Speaking of which, off to bed.
Friday, November 16, 2012
A couple of years ago my friend invited me to visit and attend a free self-defense seminar where he practices. The day before the class we had a talk about what the risks were of becoming re-traumatized by memories of past violence, how I would take care of myself if I got stuck in that head-space, and who in the dojo would be able to help me through in case it became too difficult for me to take on by myself.
The biggest complication of the seminar was finding ways to adapt the moves to my disability, so that I didn't injure myself further while trying to defend myself. I came out of that day with a new sense of self, impressed with what my body could do when it had a little guidance and adaptation. As someone with a disability, being a clear target is always in the back of my mind when I am noticeably limping in the city, or using my wheelchair. This course made me feel like my body is worth fighting for. It was the first physical thing I had done since my diagnosis a few years earlier.
Fast-forward to present day. It's taken me two years to find a karate dojo that I could feel comfortable joining, with a sensei who would be able to handle teaching a student with multiple disabilities--namely Ehlers-Danlos Syndrome (EDS) and unilateral deafness. The first encounter went like this:
Scene: Grocery store salad bar. 7pm Friday night. A man wearing a sweatshirt with a karate logo fixes his supper.
Me: Excuse me, I noticed your sweatshirt, are you a teacher?
Sensei: Yes, I am.
Me: All my joints dislocate. Will you teach me anyway?
Sensei: Come in tomorrow at 8am.
His face was stunned when I showed up, but he had a grin on his face that told me he understood my green enthusiasm. I stayed at the dojo all morning, evaluating my health, background, goals, challenges, commitments, support. I watched students practice and scrutinized my own body, wondering if I would really be able to keep my joints from spiraling out of control, and if I would be able to accommodate in case the answer was no.
The paperwork asked if I was willing to commit to six months of my best possible health (paraphrased). I wrote several sheets of notes down first, to make sure I could honestly check the box marked YES. The notes said what my challenges and strengths were, and how I would get through the complications of EDS.
If you've ever explained EDS to someone you've seen their eyes glaze over with judgment of some sort, somewhere between you poor thing! and okay, wacko.
A made-for-daytime-TV moment:
Office manager: We need to be sure that you will be able to keep yourself from getting hurt, dislocating joints or passing out.
Me: If I could do that, we wouldn't be having this conversation. Those things are all going to happen, and probably often at times. The question is whether or not you're willing to stick with me, help me through, and continue teaching me when it does. This is my choice, I'm only getting sicker, so I would like to do this.
Sensei: Some of us have disabilities that are clearly visible. For some of us, if what was in our hearts were visible, we would be just as disabled.
Another hour passed by as I helped with Japanese language work and offering to transliterate the students' names. After one more round of observation and scrutiny I made my way home, eager to share my discoveries with my incredibly supportive wife. I was thrilled, and she was thrilled.
The most important lesson from this day is that I astonished myself. As I explained my situation I noticed that I have come a long way. I can talk about where I come from without collapsing; physiology is everyday language and knowledge for me; my approach to self-advocacy draws courage out from others who are afraid to engage the world of disability.
So ends the first visit.