Saturday, May 25, 2013

Never Stop Learning

I've spent the last three days on the couch sleeping and puking my guts up. EDS is for the birds.

It all started Tuesday, which rolled into Wednesday: a full two days of training for work in a hot and full room. I wilted like lettuce fried in oil. Nothing I did worked to stave off the heat exhaustion. I couldn't keep my joints in, my skin was burning, I was nauseous, it was a mess. They got a fan running but it wasn't enough. I'm glad I had a terp because I couldn't hear over the fan. :p. Such days are long and painful. Not a special chair, a back brace or a vista collar would keep me vertical.  What's amazing is that I have not needed any of these devices since last summer's heat took its toll. I had forgotten how completely it saps me of life and wellness.

My port did what it was supposed to do: kept me conscious and hydrated. But that wasn't enough. When I got home Wednesday night I collapsed until this afternoon.

I took advantage of the downtime to think about the muscles I've been using in my kata practice, and to think about the way Rafael looks when he performs them. They are very different. I also watched Higaonna-Sensei on YouTube performing Gekisai Dai Ni about ten times. I tried toughening my weak and hurting muscles from the couch as though they were going to perform those kata from the sofa. I have everything but the nekowashi dachi hands. I think.

When I miss karate my heart breaks. I had decided that I would make it today by hook or by crook, even if just to sit on the bench. But I had no energy in me this morning after having been sick all night.

This is one of the times when it's the worst thing to be alone. Not only am I a prisoner in my body, but my mind is wondering what my wife is out doing with another woman who is not sick, and I wonder all kinds of things that it is best not to think about.  I was too sick to prepare food that I just threw up anyway once I finally got them made. That's nowhere near as cool as practicing karate!

This is the reality of EDS. It is unpredictably severe, painful, lonely, and tiring. I need to remember this bout the next time I feel badly that I'm not keeping up in karate. The reality of EDS is this: it's amazing that I am following this dream! I could give up and let myself keep feeling like death as much as I do, or I can make my best effort to do everything I can for as long as possible. I have not wasted a single moment of my time in the dojo. My PT was right, when I am sick and stuck in bed, I'm going to want those memories. There is so little else keeping me company these days.

I am proud of my hard work and I wish to be brave when I my days are less triumphant. Such is a challenge, and begs for wisdom on how to be grateful for what I have accomplished, rather than angry about my limitations. But it's about balance, right? About not being satisfied with just getting by? We only get one life to live and I have the chance to make a lot of good choices. May they be good ones.

Wednesday, May 22, 2013

Poco a poco

I couldn't hear and couldn't keep up tonight. The stress, pain and exhaustion of living on my own are catching up to be. I found myself straining to understand the Senpai and got so confused that I took a seat on the bench to just observe from a distance and see if I could figure out what was going on. It was the right thing to do because I was becoming frustrated and feeling isolated. But that's just where the adventure began, and it gets better from here.

Rafael speaks very limited English but he has beautiful Spanish. He speaks quickly, though clearly, and it is usually easy to understand him because he demonstrates what he says. He also seems to understand without me ever having to have explained that if you repeat the word and use only as many words as you need, it's MUCH easier for me to hear. He has started coming to some of my classes to help out, and help is exactly what I needed.

It helps to think in another language when I can't hear because I fall mute when I get overwhelmed by the number of possible words I heard in English. Believe it or not, even American English is overbroad. So when I fall mute it helps to switch to any other language, where I have a less complicated set of words to work with.

Spanish speakers are far more animated, like Italians are. It takes many fewer words because we also move to communicate. The bonus here is that I can communicate a lot more while saying far less. Speech really just isn't my thing.

Rafael demonstrated first because I couldn't hear the instructions, and his demonstration took the frustration out of trying to listen. Then we started and he gave lots of encouragement, lots of correction. When he saw that I understood the principal he had me stop and rest. I don't know how he understood but he did. He is very much like Sensei Tony in that way, very aware of himself and of others, but always focused on how to help others.

At the end of the class I was tired but quite satisfied with the outcome. I don't know how to repay the love of all the people there or why I feel compelled to do so. I have said before that I should be focused on letting their help be part of my success, because my progress is their reward in its own way.

Sunday, May 19, 2013

Sunday Breakfast

Karate starts on Saturday mornings at 8am. My mother was in town to help me clean my house and make it nice for me. We spent the morning talking about my future.

Anyone who has Ehlers-Danlos Syndrome knows how hard and painful mornings are. My dojo does not ignore the grunts and adaptations, but rather, encourages me to adapt and keep up in my own way.  I skipped karate on Saturday to be with Mom and I'm glad I did. Quality time is as rare as EDS.  We enjoyed the chat and had a couple of little adventures around town before her flight.

But today I wanted to join my karateka in my heart. I got up early, hydrated, put my bones in place, and hopped up to the wii. It took 45 minutes to get a 19-minute workout, plus a rest on the couch after. But I did it!

On Sundays I make myself a big breakfast- toast, coffee, grape, and spinach with egg and cheese. (It's supposed to be an egg scramble and spinach is supposed to be a garnish, I think, but I really love spinach.)

I'm excited about karate tomorrow because I will not have missed a beat, physiologically speaking.  If I miss Saturday karate that's five days before I have karate again on Monday, so it helps to have something else to do. I can get a better workout if I exercise in the evenings, though something carnal inside me argues that working out in the morning has is own importance; it's much harder to workout in the morning. Such is true for anyone on some level, especially if it's been a while.

Start where you are, keep it up, and stay again when you need to, right from where you are at that time.

Friday, May 17, 2013

Take a Break.

Sensei walks past me, catches my eye, and discreetly waves his hand, lowly.  It gently says, "I see you are working hard, but I also see that you are suffering.  Take a break."

I refocus: it is more important to succeed overall than to complete this one task.

Karate is the break I take from life itself, which is currently a circus of horrors. It won't always be this way, and I have to believe that because it has not always been this way. Despite the worst, or because of it,  am still surrounded by many wonderful people, which says a lot about both their and my character.

Monday, May 13, 2013

We're going to support you through this. -Sensei

This evening's class was all about endurance. We stood in shiko dachi stance and held our positions while each student counted from 1 to 10 in Japanese, with a Kiai! in the middle of each, punching with every count. It took a lot out of me but I was amazed that I was able to participate. I actually finished with the rest of the class! Now, when I stood up, it was a different story, but I still felt good, even though I felt an enormous rush of pain. It went away in a few seconds.
I had sent my Sensei an email explaining how difficult times have been for me. It's been so humiliating to have to rely so much on others when my independence means so much to me. However, I consider myself extremely lucky because I have the kind of friends who are aware of the importance of anybody's sense of independence and self.
When I get to karate I know immediately a few things:
1. Something wonderful is about to happen.
2. This will hurt.
3. I will be proud of myself.
4. My fellow classmates will not let me fail.
5. I will not give up on my classmates.
Sensei watches every one of us from warm up to cool down. He expects our best and he has the leadership skills to pull it out of us. I can tell when he is frustrated because he doesn't let it get to him. He turns stress into effort and enrolls the students in success. I enjoy watching him teach as much as I enjoy learning.
An interesting note is that I have always struggled with my skin colour. I really dislike how yellow I look as an Italian. I know nobody even notices and under most light I look white. But Italians weren't even seen as white people until the Civil Rights Movement. My family culture is very Italian. The food I eat, the language I use, the way I carry myself, all Italian (for better or for worse). I'm okay with that, though I miss being around other Italians. But my skin colour makes me feel so alone. I am the only one in my class who is my colour or culture and it's the same at work.
When I practice karate in front of the mirror I have to face what I look like from head to toe. Believe it or not I am happy with what I see because I am improving every day. Everyone struggles with something they would change about themselves. For me you would think it would be my weight or my shape. While I would indeed like to change those things, I do wish I were either more olive or less yellow.  I suppose it's vain to be thinking about these things when the mirrors are there so I can make sure I am standing properly. I have to remember Zander's Rule #6 and get back to my practices!
After an endurance exercise Sensei had us all shake it out and stretch. Since I don't need to stretch I walk in place and relax my muscles.
"Relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax" -Nakamura Tetsuji Sensei, on each step while running in place
I work extremely hard on staying relaxed and I am beginning to get results. I fatigue more slowly, hurt less sharply, and play more happily.
While we practiced neko washi dachi (cat stance) My feet hurt very badly. I really suffer when we do foot work. But I give it my all. I know Sensei sees me struggling and I think he is proud of me during those times because he doesn't say anything to me. But once I stabilize and get back with the group he always gives me an encouraging word, or he then makes the effort to correct me. I don't think I can explain how it feels when someone accepts me as I am and helps me grow from wherever I started. But I think part of the feeling is supported. The other part has something to do with love and compassion.  And let's be honest-sometimes it's just funny to watch because I take it so seriously!  To relax takes practice. Relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax, relax....
As I walked out of the dojo Sensei gave me a pat on the shoulder and said, "I'm glad you came. We're going to support you through this." I was so touched that I had to switch languages to keep from breaking down in front of everybody. "Duele mucho," I said. It hurts so much.   
To relax and let the pain go through me is extremely hard and lonesome. Though I know I am not alone I can't help but feel lonely. Relax, relax, relax....
I signed up for this class because as an easy-to-target lgbt person with multiple disabilities I wanted to learn self-defense. I wanted to also prove to myself that alternative modes of exercise were possible, and that I could rely on the knowledge and humanity of others to help me achieve goals. Instead, karate has saved my life a hundred times and made me a better person.

Sunday, May 12, 2013

Quite An Affair

My wife left me for someone else. I am completely shattered. Sensei told me I should keep coming to karate, that I need to be around people. He's right.
Because I'm doing everything myself at home, even though friends and family are helping me, my body is toast. I hurt constantly. In karate I do my absolute best but I cannot keep up with my classmates. At times I find myself just standing in place while I watch classmates work. It's like I just get stuck. I stop moving because I can't do something safely, and then I can't start again. I have to force myself with all my might to dream up an alternative that works the same muscles. It's probably only milliseconds that I go through this adaptation but it can be more than ten times in one class that I have to do it, and while I do, the few seconds seem like an eternity.  It's lonely, physically painful, and jarring. I'd rather take an elbow to the sternum than feel all alone in a room full of people who mercifully treat me as anything but different.
I'm not alone! Everyone is helping everyone else in our dojo and Sensei watches each student carefully. He is sculpting us all into our own best forms. I believe that although he has a business to run he is also choosing every student very carefully. Every student has a trial period and no one's hard work goes unnoticed. Likewise, he expects everyone's best effort, and doesn't let challenges stop us. I consider my Sensei a natural motivator because his eyes are everywhere. That means we all have value to him.
When we slide our feet or pivot I cannot move the way we are supposed to because the skin on my feet is not connected well; I slide inside my skin but have to move doubly to get my foot to move, peeling my skin off the floor and hoping it lands beneath my feet, while the bones inside skate around one another and I try to land. I tried socks but it just made it worse. I tried kinesiotape but it came off in seconds. I froze one time, not knowing what to do. "Don't lose heart, let's go!" Sensei encouraged me.
"I can't do this safely," I said. But I tried my best. It hurt a lot and I got frustrated. I know Sensei understood because he came by and said to take a break, reaching his hand out to signal that I should stop, that he could see my effort but he could also see my pain. I told you, he sees everything.
When I started karate everything I did was painful. Every movement felt like I was slowly destroying my already angry body. I couldn't do a single leg lift without dislocating my hip. My knees had no interest in staying in line with my hips and ankles. Nothing about my body was tolerable in terms of pain or stability.  Five months later I have my third belt, I stay conscious throughout the entire class, my classmates have confidence in me and spar with me. They tell me not to give up. I do leg lifts, squats, kata, just like everybody else.
But I do them my way.
My physiotherapist has put much time and effort into helping me get stronger. I walk better, exercise more safely, and even manage my exhaustion better. Now I am better at finding alternatives but I wish I could afford to go back. Karate is teaching me that, the more I learn, the more I don't know. I can understand why Alberto Friedman decided to study kinesiology. I wish I were well enough to study medicine.
The last eight years of my life efforts have been discarded by the closest person in my world. Now I have to start over and try to find intrinsic value. All over again I have to find my own way to survive. I don't know what I'm going to do. I am hurt, frightened, angry, lonely. But Sensei is right, I should do everything I can to not lose heart. Unfortunately, I feel like I am on life support, relying on karate, work and friends to remind me that my life has meaning, even if I am sick and tired of being sick and tired.
Even if my own wife no longer loves me I need to find a way to feel valuable. At the moment I am writing this from bed because I subluxed my shoulder trying to do my laundry. That pain means my day is over. I don't feel like my life has intrinsic meaning or value anymore. Others see my life as valuable but I'm having trouble with it. That intrinsic meaning has been lost, and everything I thought I was has been invalidated from the most intimate level. How to cope? "Don't lose heart," I guess. And keep going to karate.