Reasonable Expectations

If I'm getting so much stronger in the dojo, shouldn't that translate to being stronger outside the dojo?

Ehlers-Danlos Syndrome is a permanent and disabling condition; it is not something one can exercise away.

Here's how karate with EDS works:

During the day I wear splints or braces for the joints that aren't staying in place on their own. They do this because EDS makes connective tissues weak, so tendons and ligaments don't hold bones together. That leaves muscles to do their own work of moving the body, plus the added task of stabilization. But muscles are only designed for one of those tasks.

As my muscles get stronger I get more steady and powerful, but I can't keep up the facade for long. The fact is, no matter how strong I get I am practicing karate despite having a terrible genetic disorder.

Karate with EDS requires a lot of prep work. If I have karate on Monday, preparation starts Saturday night. I work on getting enough sleep Saturday in case I can't sleep on Sunday; if I can't sleep on Sunday it means I won't have enough energy for a full day of work before karate in the evening.

On Sunday I do all my prep work for the week: laundry, housework, grocery shopping (if I have the energy, which I don't today), cooking meals for the week (if I have the energy, which I don't today, and will beg help of my generous roommate and friends, which also takes time and energy to coordinate--energy I don't have).

On Monday I brace and splint during the work hours, using every possible adaptive modality I have.  I need to reserve enough energy to drive home safely and cook my dinner, because I need any extra time to rest and hydrate before karate that I can get.

When my alarm goes off saying it's time for karate I have a hard time getting up from my rest period because I'm exhausted from work. I'm also usually nauseous because I ate dinner and it takes extra time for my digestive system to do its work, and more meds. But I can't wait to see my Sensei, so I push myself to get up. It helps that running fluids usually sends me to the restroom by this time.

Next I put on my gi and check my IV fluids.  I take meds to control the pain and lather my body up with cream that has a numbing/analgesic agent so that I don't feel as much sharp and stabbing pain while I workout.  Karate is the one time I let myself be free of splints and I want to work out as much as I can, which requires pain control.  Tired of reading this yet?  It's a lot, and this is just a quick run-down.

I thank my lucky stars that the dojo is 15 minutes away, mostly highway driving, so that won't tire me out and I can get some last-minute hydration in. When I get to the dojo I park in the accessible spot outside the front door in case I dislocate in karate and can't safely walk across the parking lot to a farther space, thereby reducing my fall risk.

After karate I shower and lie right down. If I don't get as much rest as possible I won't be able to work the next day. If I have overdone it on some body part I take care of that part and make a mental note to splint it the next day, or reorganize how I do my day so that it doesn't require that body part. For example, if I have really overused my knee on Monday, it will be a crutches or wheelchair day on Tuesday so that I can do karate on Wednesday. My entire schedule and approach to life is centered around being able to do karate.

Although I do practice karate and have EDS, I make enormous concessions elsewhere in my life to be able to do it. Everybody who practices karate gives up a lot elsewhere in their lives. This is just my story.

Thursday was the Shiai. Saturday was Spirit Training. I barely got through a shower on Friday and I have had to sleep/rest Wednesday night through now to recover from training and competing.

Karate is helping me get healthier and stronger. It just has implications that are unpredictable. Just like physiotherapy it helps my body get better, but I may not be able to do anything but rest until I recover from it.

In the dojo I don't look like I have a disability, so it may become easy to think I don't have one, or to conclude that it's not as bad as I make it out to be. But it's pretty rough, and life outside of the dojo is the authentic picture. I do karate despite these challenges because it is my dream. That's why I love it so much.

The moral of the story is, I practice karate despite having EDS because it makes me so stinkin' happy that it is sometimes my most hopeful reason for living. But I pay enormously in time and prep work to be able to do it.  I also pay after in exhaustion and recuperation time, as well as needing to tend to any new injuries or aggravated body parts.  It takes focus and dedication, but that's what karate is about.

Shiai Number Two

I have been training every day for a month for this! The dojo is packed with karateka and my roommate is cheering me on from the bench. Sensei is keeping time and Carol is keeping score. The ring is set up and the judges are placed around it.

My name is called and I don't hear it. A fellow karateka taps me to let me know.  My opponent is a karateka with whom I have practiced much. We know each other's bodies and movements, strengths and strike preferences. We have a great match and I win by just one point. She got in some good strikes that I am still feeling. I'm more excited about her progress and fearlessness than about my win. She used to treat me delicately, which may have been her fear of hurting me combined with her natural reluctance to wish to injure anybody at all. A mother and special education teacher, she is an unmistakably tough cookie who carries herself with delicacy and kindness. She is a lot of fun to work with and I know she will beat me someday. I will be glad when that day comes because I will have been a part of her training. She gets me back during practice. :)

My second opponent is someone I really don't know well, but I tied with her husband in kata. He broke the tie and won in the second kata. I have lost to this woman before. Having learned that she is quick, knows how to reserve her energy, and has a good eye for open strike zones, I guard myself. Unfortunately for me I forget to fall back every time I strike and she gets the point on counterstrike. She got a whopper in on me too, which left me gasping for air. I recovered and finished the fight, which makes me proud of myself.  She made a really good punch and I was happy for her.

I took home second place in the shiai, and I have never been more proud of a ribbon. Before this my most proud was third place in a science fair. I've won higher titles but the pride comes from the level of challenge and effort. In no physical activity except physiotherapy have I ever managed to watch myself grow like I have in karate. I was on the tennis team, I swam every day in the summer, and put a lot of boring hours in at the gym. Injury after injury kept me from getting any stronger and I had no choice but to eventually give up. I wasn't getting any better and nobody else believed in me, so I didn't believe in myself.  That's what happens: it takes other people to be successful. At the dojo we all have work to do. We are under stress and have challenges to overcome. We take it one class at a time. Sometimes we take home a ribbon. I did here, and I am very, very satisfied.

The shiai was last night. Tomorrow morning is Spirit Training, where you train so hard that the only thing you have left to carry you out of the dojo is your spirit. Today I have been too weak to do anything, and barely got through a shower. Still, with Ehlers-Danlos syndrome those weak days happen even when you don't do anything athletic. I prefer to have had the amazing memory of having competed in a karate tournament. When I'm laying there on the couch and don't have the freedom to move I really have to work to keep my thoughts positive. It gives me hope that I will be able to at least walk into the dojo tomorrow, whether I sit on the bench and just learn or go for broke and participate. Either way, I feel better having karate in my life for the days when I can do more. Kiai!

I'm In Pain But I'm In

Just like the first four months I was in terrible pain. I took a break to hydrate as I have been working without my IV bag. At that point I made the decision: no more of this today. I going to hurt either way, and today I choose to push through the pain. I will go easy on the moves that hurt and maximize the rest. You know what? It worked.

Sensei gave me plenty of encouragement and accepted when I needed to rest. It makes the difference between my giving up and my getting back in as soon as I can. That's a lot of pressure for one person but I'm glad he takes it on. One day I hope to be able to carry all that ambition myself.

500 Imperfect Kicks

"Who here is a perfectionist?" asked Sensei, who then explained that we need to focus on only our practice when we are on the dojo--not our children, work, or whatever else is going on outside of the dojo. He then reminded us not to drive ourselves crazy trying to get every detail perfect, but rather, to have some fun and stay relaxed.

The very next drill we did was 50 mawashi geri, roundhouse kicks, with each leg. Roundhouse kicks are the most difficult thing for me to do.

The first step of the kick is to pivot on the ball of the foot I'll be standing on, but because my skin is barely attached to me I'm not actually able to do that. My skin does not come off the floor with my feet and body, resulting in a very painful pull.  I either have to hop or step first, which gives an opponent advance notice of my next move, saps a goodly bit of energy, and changes my center of gravity away from what it needs to be for the kick.

Next, I aim. The kicking hip comes up (and hopefully stays connected), followed by the knee and then the swing of the foot. At this point the ankle I'm standing on usually subluxates, followed by the knee and/or hip. That is painful, but more frightening, because it can be so painful to land on a dislocated hip that I cry out in fear or pain, which breaks my heart.

If I complete the kick I have to find a way to land and right my body. This is the hardest part because, by this point, my standing leg is no longer where I planted it when I began the kick. Think fast: I have to figure out which bones are still under me and try to re-stack anything that didn't stay put. This looks and feels something like jumping down from the kick as though I were hopping down from a high shelf or counter. I never land gracefully and it almost always hurts! Tonight it didn't: I've been working very hard on my hip and balance.

Skip perfection, he says. I am terribly far from ever worrying about perfection, but that does nest me in the position to just have fun with it--and I do! That must make me lucky, because I kicked my heart out!

As I continued I discovered that my stamina has improved, and so has my temperature tolerance. My balance continues to be a struggle because I have weird proprioception (that's the word for the body's ability to know where it is and where its limbs are in space, and where it's going). I working on it.

Spectacular night.  Chillaxed, easy-going but firmly pushing through. My Sensei is very versatile, I think he could squeeze orange juice from granite if he needed to. He has a seemingly bottomless well of practices and ideas for how to help us all get a little stronger, a little more accurate, a little more graceful. I envy his toolbox of leadership. Moreover, I appreciate his warmth, humor, and the sweetness about him when he watches his students like a lion watches over his pride.

I write so highly of my Sensei that it seems almost sublimated or unrealistic. One would argue, and he certainly does, that he is just human. Of course we all make mistakes. But I have yet to bring a concern to his attention, no matter how small, that was not heard with love and compassion. What more is there? The truth is that he is an  experienced and educated teacher of karate and I am always caught off guard by how much more drawn to the art I become when he is teaching.  Therefore, I think it's okay to write of him as he appears to me.  We all have our faulty lives outside of the dojo but while we are there we are safe from those things, and we have the freedom to choose what is best about ourselves and flex those strengths for a little while. A man whose life work is dedicated to such improvements in people is a sterling treasure in this world.

At night I usually leave the dojo fired up and excited about going home to practice some more. Tonight I was satisfied with my work in class, comfortable with my body's progress, and finally peaceful enough in my head to let it rest. After a month of diligent physiotherapy to restore my hip it was nice to rest.

You may be wondering, if EDS is so bad and so dangerous as I say it is during karate, why do I practice martial arts? It's because those injuries happen anyway. The pain is a constant companion. A few times a week I get to let go of it and know that I can do more with my body than I have ever been able to do in the past. To discover one's strengths requires exploration. It's constant discovery in karate. Sometimes I don't like what I find, but usually I do. We did something like 500 kicks in class last night. I remember the three or four that went exactly the way I had wanted them to go. That's why I bother.

Be well.

Spirit Problems

"Your spirit will get you out of trouble 90% of the time. If someone is trying to hurt you, give them a *very* hard time. Do not give up for any reason." -Sensei Tony

After having missed two weeks of karate due to health issues I am thrilled to be back in the dojo! A little stiff, but happy. I continued to practice every day and worked on stabilizing my hip, which is back to its usual, less-often schedule of popping out of socket. I still can't balance on it but I can use it for everything else.

My spirit has been a fleeting entity these days. I will have to make a lot of changes to the way I do things if I want my life to improve. It is very hard to do and I miss my wife so much that I barely have any drive to go on living. It's very sad to have a broken heart.

At the dojo we did push-ups on our fingertips, which I certainly cannot do the way everyone else does. Sensei taught me how to adapt: use just one hand of fingertips and use the entire other hand. I felt capable and strong, even though I use the wall to do push-ups. I am always pleasantly surprised when he calls out a strategy to adapt something I struggle to do, but I have no reason to be surprised. Every single person in the class is under his close watch and he is a remarkable instructor. I don't know how he sees what he sees.

Furthermore, I most appreciate Sensei's vision for what I have been calling adaptive martial arts. I'm just as tough as anyone else in my rank and it's because I am able to adapt what is unsafe, maximize what's good and work on what can be improved, all under the watchful eye of a very precious and skilled man.

Humility is a tenet of our practice. Sensei demonstrates humility by insisting that he has done nothing for me, that God is working through him. While that may be true, it is his spirit that has carried me through these hard and lonesome weeks until my health was better. I have leaned heavily on his spirit and probably will continue to do so until my own spirit is able to carry me again. His warmth and friendship continue to fill me up with the comfort and determination that I desperately lack to keep fighting these days. If ever grace were in my life it is here among my dear Sensei, Senpai, and fellow Karateka, who are working just as hard to outgrow their own limitations at all times.

Who would have thought in a million years that I would be practicing karate? Less than a year ago I could hardly stand up and the prior three years I couldn't even stay conscious. I love karate with my whole body and soul. That's a very real blessing and a protective factor, because very few things, if any at this time, speak to both. Even though it is not in our dojokun, there is plenty of room for mercy in our hearts.