Saturday, December 21, 2013

2013 in Review

I have come to enjoy sitting in my car, surfing the web on my phone, waiting for my body to calm down so I can drive home safely from karate. I run fluids, drink water, catch my breath, wipe my face, and just sit peacefully for a little while. This is also usually the time I blog, while the feeling is fresh.

Randori is a very slow, controlled spar. The moves we make need to be extremely gentle, and no contact should be audible. Randori is a space to practice technique. It's essential. I am very unfocused during randori because I am primarily thinking about not injuring myself. Moving slowly means more energy, more muscle tone, and quicker fatigue. During a fight I would be dead meat.

Feeling brave, and not wanting to waste the last class of 2013, I practiced break falls with the class. Left, centre, right. I learned pretty quickly that nothing is more important than protecting my head.

Break falls are something that I really plan to master, as every step is a fall risk when you have EDS. Falling safely is the best thing I can train myself to do because it is simply an unavoidable part of life. While it would be nice to not fall at all, such is unrealistic.

We did a few new and challenging drills today. As I struggled to keep up I realized that I was still in fact keeping up. What an epiphany! And how humbling, that I have been supported throughout. I was overcome with grief that my wife has given up on me, and her entire family is gone from my life, my support system. I felt so lost in realizing that, although they have all gone, I am not myself lost. I have followed my Sensei's directions,  listened to his advice, and held the dojo more closely in my heart than any place I have ever loved, including my home town of Buffalo.

Here are some of my biggest successes in 2013:
-Moving from 9-kyu to 7-kyu
-Getting off IV fluids during class
-Getting through almost an entire class without stopping
-Learning to adapt movements according to pain and tolerance, without compromising technique
-Learning Geki Sai Dai Ni, Sanchin and Saifa kata
-Connecting with other karateka online
-Attending outdoor events with my dojo
-Making new and wonderful friends
-Making karate a priority

Something happened between my 8-kyu and 7-kyu belts. I have changed. My body shape has changed dramatically, my self-acceptance has kicked me around a bit and I've learned to cope. Karate has become a much more serious practice. Every decision I make in life is based on how it will affect my performance in karate.

After my wife left I started looking into moving back to Buffalo, where I got my start in karate, as with life. But my Sensei is a father to me, and one of my best friends. What is a real father, but a humble man, aware of what he can and cannot offer to the world, who spends his top efforts on the impact of love on impressionable minds? What, but the impetus behind safe and healthy decisions in the darkest times that help a vulnerable person emerge stronger and better? I hesitate to write this, not because he has not been all of these things, but that my biological father was the bleakest opposite.

What is a Sensei, but the same? Either way, there is plenty of kicking and screaming.

Everyone in my dojo is such a pleasure to work with. I love every last person in my dojo, I feel part of a family. How could I leave? I need to stay here and become what I have set out to be.

Regarding EDS, I'm baffled: how could medical school have been too high a benchmark, but karate so approachable? My only hypothesis is that, at the dojo, I adapt in any way I can, and my karate family works with me. Med school is far more competitive and exclusive, to the detriment of people with disabilities who could really do something fantastic if they had better access. Now that I am no longer planning for a family I often wonder whether, after my first black belt, might I actually become well enough, able to endure enough, to attempt school again? What might the prognosis be for a medicine career if I were to become stronger and healthier? Will the zebra monster still get me? Is there anything worth fighting this hard for if not my dreams?

At the loss of my wife and our plans for a child I have realized that the best person who will always be there for me is my future self. I had better get ready to meet that person. They are much stronger than I am, and I want them to be proud of what I did on the way to meeting them. I did not break my wedding vows, I have not given up on faith, and through the grace of hundreds of people--literally hundreds--I have not given up on myself.

The holidays are killing me. This is my current opponent. It's great to say all those things I just said, but I am still grieving tremendously. My friend accurately described this time in my life as "fucking brutal." It's even so hard to pray that I just stick to my school's Dojokun:

Through discipline, strength and humility, 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.

Mokuso yame. (Meditation complete.)

Friday, December 20, 2013

The Path

How ever many years I've got left to live, that's how long I'm going to train in karate. Some part of me is alive which has had no voice of its own for thirty years.

My dojo posted online:
"I can show you the path but I cannot wall it for you."

To which I replied:
It is enough that you walk beside me, and sit with me when I fall, don't let me sit for too long, and help me get back up again, and stay close until I can stand on my own. Getting through those falls is 80% of the work for me and I am grateful for the support of my dojo.

Thursday, December 19, 2013

The Kicker

Tonight I learned during randori (slow sparring to practice technique with a partner) that if you kick repeatedly the other person has to continuously look down to block, and that's a good chance to strike the head of they aren't protecting. Of course, I learned this because I was the other person who want protecting their head! That's why we go slowly.

I also got a chance to see what it's like to spar while severely nauseous. I guess I have gotten too ambitious about drinking water instead of relying entirely on IV fluids. That was a great thing because I learned my limits. I also barfed up my dinner.  I'm calling it a win because I didn't barf on the floor. Yeah!

Saturday, December 7, 2013

Double Take

When you move up in rank you don't have to get up as early to catch the Saturday class, which begins at 9am for the intermediate and advanced level karateka. I remembered this half-way through the 8am class. No harm done, I just stayed for the next one!  I even made it most of the way through.
I can now drink about 36oz. of fluids per day with no reflux. With better nutrition my body has been more stable. As much as I wish I didn't have EDS, I wish my friends who had EDS were as lucky as I am to be getting incrementally better,  albeit incredibly slowly and with painstaking effort. Ehlers-Danlos Syndrome is really a terrible thing. It can be disheartening when your physiotherapist and occupational therapist throw their hands up and say,  "I don't know what to do, so what do you want to try?" I am thinking about these things during karate because I wonder if they understand what I am really going through--or if I even understand it myself. It is so overwhelming that sometimes I just have to stop worrying about it, lest it snap me in half.

I've been trying a new thing: doing kata while seated, as though I were in my wheelchair. This gives me a great opportunity to practice without fear of falling over. In truth I have only ever fallen over once in karate, an enormous accomplishment, but no reliever of the vigilance it takes to catch myself the million other times I lose my balance or simply don't have the executive control of my legs that I need to have.
When I practice kata seated I still keep timing as though my legs were doing what they should be doing. Usually I am also activating those muscles as I am able, at least by tensing them. A common misconception about wheelchair users is that we are all paraplegic. Society doesn't easily accept that just because some people can walk does not mean that they should, or that it is even safe to do so. I am thinking about this during my kata and trying to wash it from my head with a flood of hyper-focus on what I'm doing at the present moment. Instead of getting into a power struggle between my  frustration and my goals, I choose to be satisfied with the fact that I've shown up,  given it my all, and haven't given in just because my legs have given out. I know that as soon as I can safely use my legs again, I will. Until then, I will learn kata sitting down, because I need to know how to do this stuff from my chair, too.

I want to focus more on keeping my movements fluid, consistent and accurate. Having to worry about only two limbs at a time is helpful, but can also be a hindrance when putting it all together.

The Potluck
After karate my dojo threw a potluck party!  These are always fun, and I always learn something new. The last one I went to there was a kendo demonstration. This time it was haka, a Maori dance from New Zealand!  I am a big fan of New Zealand culture, particularly the Maori. The dancer and his family are from Hawaii, and they taught me a lot of interesting things!  It was great to make new friends, and my jaw hurts from smiling. When an EDSer's jaw hurts from smiling you know you've done something right! The dancer's wife lay over my neck a beautiful Kukui lei, which I had never seen before!  She explained that all people wear a lei in Hawaii, and give them to people they meet. I was very touched, and I thought of the Japanese Tea Ceremony that is so special to me. Maybe I can make matcha for my new friends sometime.
Another family from Puerto Rico brought a traditional dish of banana and chicken,  wrapped and baked in a banana leaf. They also brought a sweet coconut drink, of which I could have drunk a gallon. I got to meet their children, and we chatted casually. I have known them for a while and enjoyed practicing with them, so it was something special to share a meal with them.

So many other great things happened at the potluck, but if you really want to know all the secret wonders of karate you'll have to join a dojo and see for yourself. Who knows?  You might bring something magical of your own to the pot.

Be well.

Saturday, November 23, 2013

Mister Misser

All night I had violent muscle spasms, an amplified form of the day's evil pains. These spams hit so hard and fast that if I could replicate them I might get a new kata. My body wrenches so hard that I flail, so heaven help you if I happen to be nearby with hot tea in an uncovered tumbler. I got a dislocation that it took me hours to reduce, a bruise from flailing into the wall, a nasty headache and soreness all over.

I missed karate this morning.

Today I had a lot of plans. I won't be able to do them independently. I might not be able at all, we'll see. So far I've had breakfast and brushed my teeth. This is an enormous accomplishment every single day and I give thanks for that.

There is nothing in my dojokun about perseverance, and I prefer it that way. Sensei often speaks about Higaonna-Sensei's unforgiving and relentless hours of repetitive drills. He says of 2007 punches while crouched in shiko dachi, "but you know what? I got through it by only thinking about the one I'm doing: now this punch... now this this punch...."

My point is that it makes sense that mindfulness has a cumulative impact on overall success. That is, just focus on the next task. It's very hard to do that with EDS because I will wear myself out for several days by doing certain things for five minutes, and this is not hyperbole.

I hate missing karate. That place is the only thing I strive to do, the only thing I always enjoy. It's where I get to be with myself and my body in a positive way. When I can't make it I feel so sorry, so very sad. I miss my Sensei, I miss working in groups, I miss just being somewhere and knowing that I don't have to plan out the next hour. I can just hang out and have fun, and know that I will be able to handle anything that happens there. 

Being in the dojo reduces the anxiety I have about EDS. We never do a drill for very long, and if we do I just take a rest when I need to. Sensei has instructed me to bow out and rest when I need to, so that means being a tough guy is not acceptable. I have to follow the rules and be honest about what I can and cannot do. In that sense I interact with my body's limits, and it doesn't seem unmanageable like it does outside of the dojo.

My second instruction is to get back in there as soon as I can. I live for that feeling I get when I open the door and bow back in.

Thursday, November 21, 2013

Keeping On

Onegaishimasu. Please teach me.

Life continues just as it has never promised to wait or slow down. But I look for the beauty and I saw it at the dojo this evening.

I had to sit down so I didn't overdo it. That left an odd number of karateka, with one of the younger karateka left out of a paired up exercise. Sensei slipped on his gloves and paired up with her.

Sensei has a big job to do. He is the head teacher, the owner, the leader. He is also a father, a friend, a counselor, a spiritual leader, a moral compass, a cheerleader, and a genuine human being. What a tall order for one guy! No wonder he looks tired by 9:30pm when it's time to close up shop.  The whole day through he is watching like Peter Cottontail. Are the children safe? Are the adults being good role models? Are the exercises challenging enough? Are the exercises too challenging? Did the business meet the bottom line this month? Is the paperwork done? Is the restroom stocked? Does the timer have batteries? Is the floor sanitized? Is my attitude on straight?

It's truly no wonder he isn't sure how to answer the simple question, "How are you?"  Every day he works with students to help them face their fears and challenges. Nobody has a hill that he won't climb. It's amazing to see.

But this young lady who was the odd one out today happens to be a bit skittish. But I saw Sensei in a rare moment. He was simply playing, enjoying a spar with her, building her confidence. He was a lion playing with his cub.

How it makes me happy to have seen this. It reminded me that I need to have fun in life.  I enjoy karate but until I felt at least a little safe with my skills I took it far too seriously. Constant hypervigilance is part and parcel of life with EDS. But if he can take on all that he does and still play, then maybe I can, too.

Sensei ni arigatou gozaimashita. Thank you for the lesson, Sensei.

Friday, November 15, 2013

Reaching Out, Reaching In

The belts in this picture are my former ones, and my finest achievements. They show that I have not given up on my body, and they wrap around me as does the love of so many people.

It has been seven months since my wife left me. My dojo has continued to be the anchor that keeps me from sailing over the edge of the earth. A hundred or more people with and without EDS cheer me on while my medical professionals help me keep at it. I feel like a jerk because, despite all of this, I still ache for her. This is a major error of thought as it invalidates everyone who has helped me pick up the pieces.  Karate has been a way to cope, something to focus on.

The picture in this blog entry is of my first four belts, stacked and bundled with a modest thread. They rest on my bookshelf where my wedding photo once stood. I need them there right now because they remind me to continue fighting like H. E. Double Hockey Sticks to stay positive. It hurts to be without my wife, to know that she has let go and moved on, but I have not. 

My friend and Sensei Mike, up in Buffalo, challenged me to keep a leader's attitude. I am aware of the fact that I say much online, and everything I say can be construed rather deeply by a lot of people. Such is true of anything we say or do. It has taken much grace by people who continue to reach out to me, to remind me that even getting support online can be asked for and gotten in a positive way. Positivity does not just happen. It is a choice--a way of being--actively pursued. 

Asking for support at all is a positive move. Just like asking for help to perform a move or technique in karate, asking for help to navigate a cloudy day is another way to connect with people who care. Self-Defense is about self-preservation. If we go the extra mile physically,  then it makes sense to also go the extra mile emotionally, and both in good company.

I do not wait for a crisis before I reach out. It is the "humility" part of my dojokun, a beautiful meditation authored by my Sensei on which I rely several times a day. We all have to make choices. If we are creative and patient we can perhaps always find at least one positive choice. If we cannot, that is the signal to reach out.

Reaching out looks like this:
1. Identify people I trust with my thoughts before crisis starts, tag them in my phone contacts as teammates.  Also tag 1-800-SUICIDE, 1-800-VET-2-VET, and any other crisis line.  It helps to have a confidential and nonjudgmental person at the ready.

2. Don't overthink it, just call. Say, "Do you have some time to talk? I am having a tough time and could use some support."

3. Be honest with yourself and the person or people helping you. Tell the truth.

4. Do your best. It will be messy because crisis is a highly emotional time. Karate and other self-defense practitioners may feel that they should be tough enough to handle it alone, but the strength to be vulnerable is essential in self-care. 

5. Give your awesome self a round of applause. You go, you tough cookie. Make a plan for tomorrow so you have something to look forward to, practice a kata, drink some water, and get some rest.

Good work! Nobody said it was easy. But if you practice karate you are no stranger to being tough. Inner strength is much of overall strength. Seize the opportunities to get a little stronger by practicing with others. That is, reach out when you need to. 

Now on my 7-kyu belt, I am right at the early intermediate level. I think that I am conceptually in the right place. Physically I am working very hard to get stronger. Stronger, in my world means more stable, movements more deliberate, complex exercises practiced more conservatively in favour of longevity. I really want to strike a balance on that last one before I progress any further. I reach out to my doctors, physiotherapists, friends, and of course, my Sensei. 

Be well. 

Monday, October 28, 2013


I got my green belt! As usual, it was not the way I had planned to get through the test. As usual, it was a little bit better than the last test.

After a recent injury outside of the dojo my pain has been at a constant level ten. Any extra pain at this point and I am in tears from the agony. This has an enormous emotional impact. But this post is about good news, so I digress.

The dojo is packed on testing day. People from different classes I don't usually get to see are saying hello and making room to line up beside one another, and I am greeting them, too. Well aware that my pain level is through the roof I recognize that I will have to be very careful. However, Sensei has a way of knowing the difference between somebody who is going gently because they're suffering and someone who is, as he puts it, "dogging it." I am going to have to push myself, but if I'm being honest with myself I need to own up to my limits. The test is two hours long and I am determined to complete it.

The whole reason I practice karate is because I refuse to give up just because of my disability. Furthermore, I refuse to be a victim of violence for seeming an easy target on my crutches or for being transgender in unfriendly territory.  Therefore, when I am perfectly safe and surrounded by love, with God beside me as I perceive God, it is a time to follow my dream of practicing karate. I am in a very good position to make myself proud by demonstrating that I am stronger, smarter, and tougher than I was when I got my last belt.

I love my fellow students, maybe even a little bit beyond reason, since I know little about them outside of our school. In a perfectly safe environment such as this it is easy to love openly until my heart is so full that there is little room to feel despair over the pain. So we line up, and I get ready. I say a small prayer for each of us in the dojo where I ask for safety, diligence, and understanding, with open minds to receive the guidance of our Sensei.

For the previous few weeks I had been on the sofa because my legs just couldn't hold me and the pain was too exhausting. I had to take karate easily and everything else very lightly. My life was work, sleep, and karate. I could not cook meals, provide self care, shop for groceries, or do anything independently. The only things I allowed myself to do were work and practice, both at attenuated paces. The only reason I even allowed that much was because being around people is very good for mental health, and the isolation of EDS is something traumatic to go through again and again, unpredictably, forever. Therefore, in some instances I am better off forcing myself to endure the pain because I may get some relief emotionally, which can in turn contribute to my physical wellness.

As expected, less than half way through my legs give out. They are weak and are not performing the moves that I'm asking them to perform. The Senpai who is testing me has a look on his face that shows me he cares and respects my challenges, and that he feels helpless against them much like I do. As we're talking my head becomes foggy, I can no longer complete a sentence, and I start to fall over. He suggests adapting the test to a verbal exchange, where I tell him how I would respond to this or that attack. I went through a brain fog and it was hard to think or speak, but we got through it together, and I felt a little bit stronger. At that moment I realized that as long as I don't give up, I will never be alone. I lt finally hit me that I have managed to develop my character into a person that other people want to be around, that I have the ability to connect with others at the heart, and that I can use those connections to help myself as well as them.

Eventually the fog overcomes and I am stumbling. I can neither think nor see straight.  I have a decision to make: go on, or go sit down. But why not both? After all, I am a wheelchair and walking aid user outside of the dojo, I have done my honest and absolute best, I am well educated and experienced disabilities advocate; here I am facing my own disability at an activity that I wish to accomplish. My goal is the belt and my plan is not to give up for any reason. So I sit down, have some water, and try to think about how I can continue. While I sit my vision returns. I decide to continue with just my upper body because that is what is working right now. Instead of working with a partner I remain seated on a stack of gym mats and fight with the nearby punching bag. I think I'm winning! I feel good, I can see that the people around me feel good, too. We are all smiling, sweaty and satisfied, hopeful and ready to refocus. I finish the class this way and Sensei says that we all did very well and he is proud that nobody gave up. I take the liberty of assuming that his message about not giving up is meant for me to hear. I let it soak in. Not long after he calls me to the front I take a bit of extra time to stand up on my wobbly legs and receive my belt.

Now I am an intermediate karateka.

Thursday, October 17, 2013

The Frustrating Thing

Some days it's too much to ask of my body that it wake, prepare for the day ahead, wash, dress, (let's face it-poop), prepare and eat breakfast, pack medical supplies and splints for the day, pack for the day itself, and so on. Every little thing comes with a deliberate plan of execution. Karate is at the end of a long day of this, which gives me the whole day to fret about how I won't have any energy left if I'm not extremely careful. On most days I choose to see it as a goal rather than a problem.

For the last two weeks I have been too unwell to participate in karate. I have gone and sat on the bench for as long as I have been able to sit up, I have tried practicing a few minutes at a time and laying on the floor to rest, and napping before class is not helping. It's a heartbreaker because I love karate. It's also very lonely. Instead of discovering what my body can do in a room full of friends I'm alone on the couch wishing I could do anything to get active.

I am supposed to test for my next belt this Saturday and I don't know how I'm going to do it. I suppose I will have to go and do my best.

One of the most frustrating things in life is to be dissatisfied with the limitations of my body. Today is one of those days. Yesterday was one of those days. Tomorrow will be one of those days. It won't be like this forever, there will be better days for sure, but right now I am pretty unhappy. I just wish I could be doing karate instead of being in so much pain, both physical and emotional, that I cannot but bring myself to sleep.

Over and over: I know it won't be like this forever.

For now, it's time to take things easy. There will be a time to work, but now it is time to rest. I just hope it doesn't undo too much while this body does its sedentary thing.

Monday, October 14, 2013

Definition Of Enough

Fifteen minutes is the amount of time in total that I was able to practice karate, which I did very gently. The last few weeks have been violently painful despite what I consider a valiant effort in pain relief. But I am so tired of being benched or stuck on the couch that I decided to give it a shot tonight.

Of course I am glad I went, but I remain  unsatisfied. It's not enough! The cost/benefit analysis would not show that spending a day on the couch trying to do pain control and rest my muscles for 15 minutes of work is worth the investment. I walked in the door at home feeling frustrated. How true it is that I may be proud of myself for the effort, but how angry it makes me that my efforts does not yield more results. There will be other times when I can do a lot more, but right now I am excessively limited. Not only is my pain unbelievable, but my balance is off. My medications sedate me and my laxity moves me in directions that I'm not trying to go.

It was a tough night. I could have gone home after the first couple of times I had to sit down or lie on the floor, so I will focus my positive energy on my persistence. Just for tonight.

I will say this: it has felt quite strange to be at the head of the line a couple of times in the last few months. I have reached the highest rank in the beginners level, and have been invited to test. My next belt will put me at the bottom of the intermediate level, and strangely, I look forward to being back at the bottom. Expectations remain the same no matter where in line you are, but maybe it just feels good to be surrounded by people with more experience than I have.

Poco a poco.

Monday, October 7, 2013

Maximum Utilization

He must know how it feels to sit out and watch other people have fun because Sensei never lets me feel left out when I am benched from pain or fatigue.  After spending the weekend in bed with no energy and wicked pain I was determined to make it through a workday and get to the dojo. I made it, but the pain was still high, and Sensei directed me to stay and observe from the bench this class.  The way he makes decisions on how I can learn successfully is so careful and full of regard that I never feel alone or excluded by his direction.  Rather, I feel that his decisions are deliberate and that there is good reason.

It was nearly impossible to stay on the bench, it's just too painful to sit up.  For the time I could endure it I enjoyed watching fellow karateka warm up and practice.  Everything looks different from the bench, I can see everybody working individually to improve, but helping out the people nearby, too.  We are all watching to see if our classmates are doing okay.  There is a purity about the dojo in the way we watch out for one another, and it feels *really* good to be a part of that, to use the word "we.'

I got to see the moves of some people whom I never really get to observe, and I learn a lot by watching the movements of people who are not hypermobile.  I see where everyone stops, where feet and knees go, how heads move and do not move.  The lines are straighter in some places and movements are more relaxed in others.  Every gi fits differently and belts sit higher on some people than others.  Most notably, Sensei's eyes are everywhere.  In fact, so is the rest of his body.  He literally watches every single student.  I don't know how he does it, and I got a taste of that effort tonight.

During the day I work as a rehabilitation technologist.  I also write accessible curricula and teach.  Teaching is not my favourite thing to do but by some grace I have a knack for it.  Something in me wholly believes that people can become ever-better, and that we all have a responsibility to help one another improve.  When I started karate (a year ago, this coming Wednesday!) I relied heavily on the instruction of my Sensei, on an obsessive amount of my own research, and from other karateka who had been practicing for longer.  They showed me blocks and strikes, stances, breathing, angles, all kinds of great stuff, and I was grateful.  Sensei helped me put it all together and adapt where I needed to. 

On night like this when I'm hurting too much I also ache in my heart because I would rather be doing karate.  If it meant no more pain I would train in karate all day and night, every day.  So even though I learn a lot from the bench I would have preferred to have been in class, as anyone would have.  But I am grateful to have gotten out of the house before cabin fever set in, so I thought of the bench as one step closer to being back in action, and I wasn't giving that up!  It's a good thing I didn't, because another very special thing happened tonight.

"Get in here, you can do this," Sensei said.  He pointed out two fairly new students and told me to work with them in the back of the dojo on geki sai dai ichi, our first kata in the curriculum.  He was right!  I couldn't sit for long, so I would be standing.  I couldn't practice full-throttle, but I could move enough to demonstrate!  He found possibility in what I could do, and created an opportunity for me to do it!  I had a blast teaching those two karateka, and they were better when we finished! 

There's an old saying: "Those who can, do, and those who can't, teach."  Teaching is something I can very well do, and tonight it felt better to teach than it ever has in my life.   When I'm sick or weak I feel useless. It's a torrent of sadness and anger, frustration and loneliness.  But to take just a little bit of movement that I  had and make it helpful for somebody else was awfully special.  I remember now that I need to maximize what I am capable of doing, to help others, as I am helped up by others.

Since this is my own experience, I'm going to add this personal note because it is heavy on my heart all the same: I wish my wife had stuck around to have seen this.  My heart still aches so deeply for her after six months that I have relied on karate for life support.  But I wish she were here, and that she hadn't given up on me.  It's a true grace that my dojo has been there for me.  It felt good to give back, to not feel worthless after having been left behind.  The disposition in my fellow students' faces became so much more confident by the time we finished that I was quite satisfied with my effort, and it was worth the extra pain I'm going through now because I got a little excited and practiced a bit more than I should have. :)

Be well.

Wednesday, October 2, 2013

Everything and a Little More

I give karate everything I have, and a little more. The roundhouse kick is the most challenging because it is the most painful.
It's better not to be shy about them, so I go for it when I can and use the time to rest when I can't. Sensei knows I struggle with these; a quick glance of eye contact is enough to remind me that I need to take my limits seriously, as we all do. Just don't take them too seriously, lest they get in the way or become overbearing obstacles.

It takes a *lot* of prep work to get my balance under control, and then it takes modifying the move to stay balanced. Maybe in five or ten years I will be able to do this move without as much pain or fear of falling--but I'm not holding my breath on this. A better use of my time will be on steady and consistent improvement.

EDS is so unpredictable that every class presents an almost unique series of challenges. Karate is good for me because of this, not in spite of this: it means that the training I do in the dojo is well rounded,  approaching all body parts, even the eyeballs. Even the physical hiding spots of emotions, all the physical places that I tuck my stress, are sought out and worked.

Of course it runs through my head every day that, if I want people to take me seriously when I tell them that EDS is incredibly painful and terrible, that it must be confusing for them to also hear that I practice karate. The gap is in the cost of my karate practice: constant hypervigilance, enormous compensations of time and other activities, energy depletion (Google "spoon theory") and the looming knowledge that I will never, ever, just get up and go.

Karate is the one physical thing I allow myself to do with as little physical accommodation as I can get away with: I go without splints so that my whole body has to work as one cooperative being; I keep my movements as close to their intended paths as I can in order to maximize my strikes; I practice daily for maximum muscle memory; I push myself to hydrate ahead of time so I can build endurance workout stopping for water every five minutes....

Sunday, September 22, 2013

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.

Friday, September 20, 2013

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.

Wednesday, September 11, 2013

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.

Monday, September 9, 2013

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.

Tuesday, August 27, 2013

Tough Call

I can't decide whether to let my hip heal or go to karate tomorrow. Maybe I can kinesiotape my hands and work on my crutches. Decisions, decisions.

When I miss karate I really *miss* karate. To miss karate because of pain or dislocated joints sends me into a tailspin. On one hand I hear my PT begging me to rest. On the other hand I am terrified of muscle atrophy. The muscle spams are already  intolerable. The uncontrollable cry of pain is the embarrassment, not the pain itself. The pain itself just sucks.

The correct answer is just to go and to try my best.

Saturday, August 24, 2013

Day by Day, Como Se Pueda

The worst thing a karateka can do is not practice every day. Just something. Anything. Such was not in the cards for me this week. I spent the week in bed, my only activities centered around getting a little bit of time in at the office and putting myself around compassionate friends to help me cope worth the pain and sick. 

The hardest thing at my sickest times is getting healthy meals in. When I'm feeling well I am able to cook, prepare meals, shop for groceries, and best of all, chew. When I am sick my jaw dislocates, I choke on nothing, don't have hands to feed myself, and you can forget about digestion.

This thing about pursuing an athletic adventure such as karate is that you cannot out-exercise a bad diet. When I get sick I want to eat even more healthy than I usually do (which isn't as healthy as I'd like but isn't far off) so that I can hurry up and get back to the dojo! I want to get back to kicking and punching, participating in every way that I can. But I have yet to beat this challenge.

Sensei would know better than I, but I think that even though I need a lot of adaptations I'm pretty close to everybody else's movements. But when I'm sick for a week like this my body becomes incredibly weak and unstable. It will probably take me a month to get back up to par but I don't even feel better yet. I just forced myself to come to karate this morning because I needed it.

I have come to need karate as a vital part of my existence, part of my identity and self-worth. My whole heart is in it, and when I'm laying alone on the couch I just wish I were practicing karate. But sometimes the pain is so severe that I really cannot make an honest movement without crying out. When that happens I feel really pathetic. Part of this is a conditioned response where, when I was sick as a child my family would tell me to shut up or they would give me something to cry about. The other part is just that I am so strong willed that I become surprised when I can't will myself to ignore the pain and do the physical work that I know is going to keep my body moving successfully.

I really need to figure out methods for getting healthy nutrition when I'm sick and keeping my body somehow active. I worked really hard during the week to learn pain management mindfulness techniques and keep my attitude up. 

Despite my efforts my feelings caught up to me about my wife's desertion. She used to help me through these times and I felt comforted. Now those memories are torture on top of the existing pain, nurturing and whole moments soured by the weakness of a bond she promised me forever. Lately my mind has been so distraught that I haven't been able to focus or produce like I normally do. Couple that with being sick and I naturally long for stability, support and structure, which karate offers.

My Sensei and Senpai are dear, lending encouragement and leadership so I don't get soft when I'm sick. If I can just get to the dojo I will be held to the standards of doing my absolute best, trying everything, and adapting what I cannot safely do.  Today I dislocated my hip while we were kicking and it would not go back in place. I'm actually writing this in the parking lot of the dojo because I don't trust myself to drive until the swelling goes down. A fellow karateka ran out to my car and got my crutches for me so I could get out of the dojo, and it felt very good that I could ask for help. It doesn't feel good to need to ask for help, such is a universal sensation. But it feels good to know that when I need to, I can. I made a joke on my way out the door, that if anybody asks, I made it all the way through class.

It doesn't take much for a body with Ehlers-Danlos syndrome to lose its conditioning. Muscle hypotonia being a primary contender, the spams and laxity were rampant today. Pair that up with the side effects of medication and I have no idea how to cope with my condition. The easy answer is that I can't, and that's why I have a strong support network.

I desperately need to get back to physiotherapy. I had to stop attending when my wife left because of the cost. When I was lying on the couch all week I knew that I was doing myself a disservice by being still, and I just prayed that somehow I would be able to get back to physiotherapy. I really needed someone to help me get moving, and there is nobody now. The way my wife left was abrupt, & I haven't had the chops or the energy to get the support in place that I need in order to live. I'm in a terrible way and if I could just manage the physical pain I think it would help my quality of life significantly. For example, I haven't done laundry in two weeks. You can forget about mowing the lawn. The last time I took a bona fide walk was about a month ago. Its not that I haven't found a million ways to adapt these processes, but when I'm doing it all alone I just cannot apply all those adaptations to all of those functions. They're hard enough for someone able bodied to complete independently.

How do I break the cycle? That has yet to be determined. But for now I'm going back to bed until I feel well enough to hazard a shower.

EDS sucks. No two ways about it.  Karate rocks. More than being the best defense I've found against giving up, it actually raises the bar by giving me an internal reason to face hellacious physical challenges.

I'm glad to be welcome here at the dojo. There is a magical aspect to this place, which reveals itself in its willingness to work with all kinds of people from all walks of life. Knowing I can never repay my Sensei for his generosity and support I am just doing my best and trying to let the pain go through me so I can get right back to the love and excitement of practice.

I use dictation to write these blogs. The number of times my jaw has dislocated is above five. It's time to stop. Be well.

Through discipline, strength and humility
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.
-Megumi no Bushido Dojokun

Saturday, August 17, 2013

It Must Be Different

I never regret getting up early on Saturday and going to karate.

They have really been a help to me for getting started in karate, but now that I'm in a little bit better shape, and weather is cooler, I've been trying to practice without fluids running during class. I made it once last week and almost made it through today, too. It's nice to feel the freedom of not having my heart tethered to a plastic line and a heavy bag while trying to swing at people. It's just a lot to manage, although it's so wonderful to have fluids that allow me to do things like karate that I'm pretty sure I could cope with it if I never got off of them. It wouldn't be easy, and maybe someday that won't be the case, but right now I'm doing well.

Finally, thanks to a wonderfully dedicated doctor, I have gotten the chronic micro-barfing under control. At karate, when karateka partner up and practice karate in close proximity to one another I become very self conscious because I constantly taste puke.  I don't know if my dragon breath counts as a qualified karate move but I'm sure it could take out someone much larger than I am. I even eat breakfast before class now, which is giving me another positive edge.

Here at the ten-month mark I feel stronger and more sure of my movements, feeling less like I'm going to pass out or vomit, or both, if I dare to try a new move or to go beyond the basic positions. I think everybody goes through this on some level, but for me it has an amplified level of anxiety because throwing up and passing out were such daily occurrences for so long.

If I threw up in class I would be mortified. I know I would be forgiven and I might even get help cleaning it up, but the real embarrassment would be to my own sense of self, my inability to control a vital reflex. That's the crazy thinking though, which needs to be untwisted, because reflexes are not something that we consciously manage. We can use mindfulness and relaxation to take us so far, but the truth is that if the body needs to eliminate, thats what it's going to do.

Having an orange belt puts me at the top of the beginners class. Almost all of the people who have supported me have moved on to the higher levels, and now I see lower level belts going through their own struggles and discoveries. Everybody at the dojo was so sensitive to what I was struggling with, and still is, but I feel that as I observe the new our students than myself I am somehow either less sensitive to them and their challenges, or that I am erroneously comparing my challenges to theirs, looking to feel like I'm not alone, and not really finding that. We all have our challenges to face, and for some reason, though I recognize that my challenges are no less severe than anyone elses, they are comparatively more rare, which gives me a feeling of loneliness. It's difficult to relate to healthy people and their challenges, even though they're not as healthy as they appear to me, but simply healthier than I am.

Using the word healthy in this context, I mean able-bodied. Everybody has aches and pains, especially at eight o'clock in the morning; undoubtedly a fair amount of psychache passes through us all, which may be our most common element in terms of resilience. But the average person does not appear to be concerned about whether their joints will dislocate;  whether their skin with tear open and never heal; whether drinking plenty of water will not be enough to keep them sustained and conscious; whether the air temperature in the room means they should modify every move, making sure that they don't overheat; whether they would have to go around people and weather there would be enough time to go out before leaving to throw up, and so on.

Karate is the best thing I have ever done for myself, and the instruction of karate is one of the greatest gifts anyone has ever given me. Is the gift of physiology, time, space, safety, and instruction, to learn about this beautiful and complex organism in which I live. This is true for all of us who practice karate and face our limits, so maybe it's not that different after all: the experiences are different but the feelings are the same.

Monday, August 12, 2013

Dreams, Grief, Love, Relief

Because of my hearing I stand front-and-center at the dojo, so I'm right in front of the mirror. A lot more of my body moves than anybody else's does. My skin flies right off of me and it grosses me out. Thanks, Classical EDS. But that doesn't stop me, and I hope your body issues don't stop you from following your dreams, either.

Lately I have been really tormented by my grief for my wife as we go through separation proceedings. I can't sleep, my work and chores are suffering,everything I do has an undertone of pain and confusion. I'm lucky that my sensei has walked beside me through this. At the very least I get to kick and punch until I am raining sweat.

This morning I wrote to him, worried that I have been hiding from my pain at the dojo. He suggested I see it as doing something constructive until I can handle the pain. It makes sense to see it that way, and keeps karate a positive thing I'm doing. I'm lucky to have it, too.

It was over a salad bar that I met my Sensei and asked if he would be my teacher. As I reflected on that today I brought him a salad, just because I am thankful. He surely understands by now what an impact he has had on my life, but it will be years before I am so great that I change entire lives just by doing what I love. First of all, it will take finding out what I love. Above all else at this time in my life, I love karate.

Monday, August 5, 2013

Achievement Unlocked: 8th Kyu Orange Belt

This test was far more challenging than anything else I have ever done in the dojo. I spent an entire week before the test preparing to be pushed well beyond my limits both physically and mentally. Boy, was it hard!

The test was on a Saturday. This Saturday on with my test fell happened to be a Spirit Training day. Spirit Training is a two hour session where you train and practice so hard that the only thing you have left to carry you out of the dojo is your spirit. Part of testing for a belt involves the depth and commitment of your spirit to progress; as such, my excitement and stress were through the roof because there is nothing more fulfilling for my spirit than to put my absolute best effort into karate. However, that stress is something I have to keep carefully in check because I have a body that does not always agree with the interests of its resident mind. Such is the hardest obstacle for me, but it was never an unknown obstacle and I have developed many strategies for managing the disparity.

The class ran over by a half hour for a total of two and a half hours of training in a room that certainly felt like it was over 80 degrees. 65 degrees is the cutoff point for my ability to keep conscious without medical intervention. But there's certain days when I'm just not willing to entertain the idea of staying home, and so far this test presented the most physically demanding challenge of my entire life. I wasn't going to miss it! I spent a lot of time that morning getting hydrated and medicated properly, doing proper physiotherapy to warm up, applying analgesia where necessary, and in prayer.
I have had a very difficult time staying conscious in my previous test environments and they're only getting more complicated, so I needed to set myself up for success. And you know what? It worked! I had to take three hydration and homeostasis breaks during which I was terrified that I would not be able to continue. I am fairly certain that my sensei was perfectly aware of my fear, because he delivered a great deal of coaching to help everybody put their best foot forward. Because I also teach, albeit in another subject, I understand that it can be very draining to constantly have to coach and cajole one's students through a rigorous day, but to my surprise it was absolutely what got me through the program successfully. I'm not exactly sure what it was, but I think it had something to do with not feeling invisible just because I got sick and had to step out. The fact that he was aware of my care strategy and insisted on full inclusion anyway really gave me the gumption to continue on, holding myself to the same standards as everyone else , standards that are primarily grounded in surpassing one's own progress and defeating setbacks at least for the moment.

I did indeed manage to stay conscious for the majority of this training, and only had to fully stop one time to recover my blood pressure and visual field. I was conscious at the end of the class and received my belt with a gigantic grin on my face. I have never been so proud of myself, and I have never loved a physical trainer as much as I love my physiotherapist, because no one has ever been strong and sensitive enough to help me get the same results as everybody else gets, in a way that works for me, no matter what.

I worked so hard for this, and others worked with me through it. The combination of those two efforts is where the Spirit comes from . I assure you, it's really all you need to have left by the end of Spirit Training.

The very next day I spiked a 102 temperature and couldn't move a single muscle in my body, a condition with many other complications which lasted for several days. As I lay in bed I ponder the words my physiotherapist said to me, that I should make my memories now, because when I'm laying in that bed I will want to have the memories to keep me company. After such a fine accomplishment as my orange belt, my subsequent illness proved him right. If I'm not particularly trying for anything when I'm well, I really just feel wasted when I am unwell. Karate helps me keep focused on the life part of being alive, and not the sick part.

Tonight was my first night back in the dojo after a full week and I felt a great deal of heartache when I saw my fellow students because I had really missed them, ached for them, wondered how they were doing, wondered if they wondered how I was doing. Imagine how warm my heart became when every single instance of eye contact I made with anyone else in the dojo crept up to my arching eyebrows as the corners of my lips turned upward and I felt that curiously wonderful feeling that I get when I seem to be smiling with my entire body.

Every good feeling I experience in the dojo is so genuine and real that its almost hard to cope with the reality of kindness, wellness, and love. But there it is, and that's what it is, and thank goodness it isn't going anywhere.

I'm pumped.

Six of every 168 hours of my life are spent in the dojo during the week. I thank my lucky stars for those six hours where I feel more powerful than my pain and nausea.

Today is a rest day. It's been hard to stay conscious. Such a problem is rare these days because I am one of the lucky people who has insurance and access to better medical care than I have ever had in my life. Even though those three years of struggling the memories catch me off-guard and get me fired up all over again.

Tomorrow is my 8th-kyu test day! I'm pumped! Literally, I've been pumping IV fluids and drinking water all day.  I would really like to be conscious for this one.

Sunday, July 21, 2013

Rookie mistake

In six days I will test for my 8th kyu belt, my orange belt.  This is the top of the beginner's level.  In nine months I have made it through the beginning levels.  I am on schedule with the rest of my class, and things will get more individualized from there.  But right now, I am right on the mark.  Through injury and illness, catastrophe, and exhaustion I have pushed through.  In better times I have stayed grounded and dedicated.  The next leg will be to solidify my knowledge of the basics, to really internalize the individualized advice people have given me, and to commit to an even more dedicated schedule.

When I got the email saying it was time to test it seemed like there must have been a mistake.  How could I be ready?  I have so many things to work through, so many questions.  Every class I fumble through hoping I don't pass out, or strangle myself on the strap of my IV bag!  The more I thought about it the more I realized that the point is that I keep working through them, and I will not stop.

 Of course, there's a catch: I still struggle to get used to my body's limits.  Most jarring are the limits that others put on me.  For example, the other day we practiced takedowns.  I learned how to adapt my body so that I could do this safely, and how to complete the application of the move.  But when it was time for me to learn what it feels like to hit the floor my partner did not want to do it, afraid that he would hurt me.  I begged, and he did it one time so I could see what it was like.  Not too bad, no worse than when I fall on my own out in the wild.  The floors are padded, too.

It's hard for other people to get used to my body's limits, too.  Every day I am faced with inquiries: You can't do that, can you?  How are you feeling, how is your pain level today on a scale of one to ten?  What hurts today?  Every day, all day, I am analyzed, psychoanalyzed, evaluated.  Then, my responses are evaluated, too.  Wow, you have such a great attitude about it!  Aw, I am so sorry, that sounds really awful.  I don't know how you keep such a positive attitude. These are the words of people trying to cope with my health, with their own mortality, and with their self-image in comparison to someone with major, chronic setbacks.

When someone is trying to take me down I want to know about it, be able to feel it, be ready for it, and know what to do about it.  I can only learn that if I go through it while my body learns how to handle it.  The first learning I have to do is how to interpret other people's apprehension as compassion.  Next, I need to learn how to advocate for myself, to explain that this is my choice, my decision. Then, I need to choose wisely; I know that those teaching me are looking out for me, they know a lot more than I do about what can happen, and they have been through traumatic events of their own throughout their time in the dojo as in life.  Finally, I need to try it, and if I cannot safely manage it, I need to adapt it--not just avoid it.

Rafael reminded me in his own beautiful way that I really need to be careful with my body, that we all do.  He suggested that I do something else if I know I have a high risk of injury practicing mawashi geri (roundhouse kick), because I should use the strongest parts of myself to fight.  He's right, but I still want to also be able to do mawashi geri to the best of my ability, which just takes some troubleshooting.  Planting one leg firmly on the floor, he demonstrated a bunch of rapid-succession moves without moving that one leg.

Rule #1 of disability life is to focus not on what you can't do, but on what you can do.

It's great that I have broken through so many physical and mental boundaries in karate, doing all kinds of things I couldn't do before!  But, I need to also take inventory of what I /can/ do. As I strive to break through barriers of all kinds I also need to keep up the wellness of the faculties and capabilities that are already a part of my life, because I have worked hard for those as well.

It's a rookie mistake in the disabilities world to fall away from what we are capable of.  Oops!  Back on track I go, thanks to Rafael and my remarkably devoted Sensei.

The truth is, I am ready to be tested.  I will not perform perfectly, but I will do my absolute best.  And if I fail, I will do it again until I succeed.

Wednesday, July 3, 2013

Everybody Gets Wedgies In Karate.

Let's all just own up to it now: we all get wedgies in class.

Tonight was an awesome night! I have new nausea meds and was able to really work out without fear that I would upchuck on the dojo floor. My worst nightmare is throwing up on the beautiful floor and then passing out in the puddle of sick.

We worked on bunkai and staying on top of an opponent.  I went bonkers on my partner and she gave me great feedback! I need to keep my hands up to protect my face. Something tells me I'm not going to learn that until I have a busted jaw for the first time, but we all watch out for each other. I need more practice and will have that problem fixed before I am allowed in the position where such would be a danger. That's what I love about karate: the better you learn, the more you get to learn.

The hardest challenge for me today was my footwork. I worked intently on keeping my posture and feet where they need to be.

When the class began I was still taking care of my port and meds so I warmed up in the back corner. It's where I stood when I was new, so I got nostalgic. Sensei gave us a lot of good energy to work with, plenty to laugh and smile about, as well as meaningful instruction. He demonstrated at full speed and power, which always scares me. It brings up memories of my dad coming at me, but the dojo is where we are safe, and those feelings are gone right away because Sensei always makes eye contact to make sure the person he is demonstrating with is okay. Cool, I'm so glad to be able to face that and move right on with my practice. It's true, what Higaonna-Sensei says, our greatest opponents are really ourselves. 

What makes me feel the bravest about my own situation is that my Sensei is open about who he is and where he comes from. He teaches us lessons based on his own experiences. I know that I will have my own scrapes and bruises along the way to contend with, but when I am his age I will have seen an example of how to share with others what I have learned, which will make it meaningful.

I <3 my dojo.

Tuesday, July 2, 2013

Things Can Turn Around

I have been sick and nauseous, weak and hurting for days, but haven't been able to really eat since my wife left me two months ago, save for a meal here and there. I've lost 25lbs and feel like dirt, violently nauseous all the time, fighting muscle spams and weakness.  While trying to keep myself positive on the outside I have been awfully dreary on the inside.

Some people eat more when they are under stress and some people stop eating. Friends and professionals helped me navigate what of this illness was sadness and stress, and what of it was physiological.

Last Saturday I couldn't stay conscious in karate. I lost it after the first overheating episode and never fully recovered. How embarrassed and disheartened I was when I needed help to get to the bench. It took an hour or so to recover, but I walked out on my own two wobbly legs.

Monday was wild, a long workday followed by two fairly big medical appointments. I got to karate an hour and a half early, thinking, this is great! Time for a nap! Well, I woke up halfway through class. Whoops.

Not to miss out, I went in and took a seat on the bench. From the bench I can see a lot more than what I get to observe while working out. I am less preoccupied with staying conscious and I don't have to worry so much about not dislocating. I can just watch and learn. It's no fun being on the bench, but it is still karate time, still time for training, learning, thinking.

The low energy issue has gotten critical. I couldn't keep anything down and desperately needed energy. Tonight I finally got a proper medicine for the nausea I have been experiencing. Cautiously I ate a half of a peach and when that stayed down I went for a slice of pizza. Success! After two months I can finally eat a little bit!

You never know when the tables will turn.


Fighting for my Life

At this time last year, and for the last three years, I spent most of the day unconscious or asleep, in shock from IV needle sticks, tethered to an IV pole, nauseous, weak, miserable. Two Thursdays ago, however, I competed in my first shiai (tournament)! Then Saturday was Spirit Training followed by a pool party. I made it through all of last week's events. Why? I'll tell you why: my port.

One manifestation of Ehlers-Danlos Syndrome for me is that I cannot regulate my body temperature internally. No matter how much water I drink I can't stay cool. My body does not understand that my blood pressure needs to stay high enough to keep me conscious. When I get hot and lose a lot of fluid to sweat, I can't then tell my body to stop sweating. It just keeps doing its sweaty little thing until I'm all out of water, or I get to an ice pack, or an ice cold shower. And even then it is hard to stay conscious.  Why does this happen? There are a million different theories and I won't bother with all that tonight, but the bottom line is that there is no known cure because the cause is still not exactly known.

I tried living on high sodium diets, Pedialyte, gatorade, salt water, olives, pink salt, all kinds of trials and experiments. Life with EDS is one big science project.

For the past three years I have gone to nursing appointments several times a week for up to nine hours a day for intravenous hydration. But my skin is very lax, my veins roll or blow, I bruise easily, and the pain is so severe that I go into shock when they tried to stick me.  "You need a port," said my doctor, "it's the merciful thing to do."

Going into shock several times a week is tough on the body. They would encase my arm and my head in ice to try to reduce the autonomic response from my brain that said, "somebody stuck a needle in us-go crazy!" They used pediatric needles. Pediatric nurses. Doctors. Sedation. Local anaesthesia. Ethyl chloride. Anything to interrupt the shock. The pain was so uncontrollable that I would often end up begging them to stop, that I couldn't tolerate anymore, knowing that without  fluids I would not likely survive. I'm glad they never obliged me, except for long enough to collect myself and recover from the exhaustion of the shock. It was traumatic even though my doctor and nurses were with me every step of the way. They cried with me, not knowing how to help.

June 28 of 2012 was my "emergency vascular intervention" surgery to place the port. I was awake for it, though kept comfortable. The surgeon and I chatted the whole time and surgery was a breeze. I didn't even go into shock that morning when they put the IV line in me! It was a great victory and I got graham crackers out of it.

Next, my entire chest and neck hurt. I could not sit up for two months without holding my chest in place with my hands. Lots of ice packs. Lots of hyperventilating from the pain of my chest rising and falling with each breath. Exhaustion from shallow breathing. But once I recovered it was smooth sailing and it's been that way ever since.

On June 29th my nurse accessed my port and I was cool as a cucumber. No shock! Two litres of saline later I was conscious and even comfortable! I asked her how she accessed my port so easily and she told me. She has her third port. Stage 4 breast cancer. This woman looked over me while I was so sick, cared for me day in and out like I was her baby doll.  She is a permanent part of who I am and I love her.

Think about it: that was my life most days of the week. The other days were reserved for trying to stay as cool and still as possible so as not to undo the hydration from the day before. My quality of life was at absolute zero.

Since getting my port I have been able to exercise. Karate is an incredible adventure that I never could have seen coming a year ago!

Wednesday, June 19, 2013

For Life

"Even while both your hands are empty, you still have a lot." -Shakudo Go, my life-long friend

Karate is saving my life. It is the one thing I look forward to.  Everything else I do in a day is predicated on the idea that I get to keep going to karate if only I survive the day. I drag myself to the dojo no matter how or what I feel. And it isn't much of a struggle, because it's really the only place I want to be. The only question I ever have is whether it would be responsible to rest. The answer is, if I need to rest I will do it on the bench at the dojo. There is class, and that's where I need to be. No excuses. 

My wife has been my entire world up until April of this year. We had been planning for our first pregnancy, I invested in achieving the best possible health, she worked on her career, and as far as I knew we were the rainbow dream team. Nothing was impossible and we learned the hard way to make good choices. 

When she left, everything came crashing down. Suddenly my beliefs of undying devotion to her were the most acidic ideas in my mind. 

Here is what people do not really think about because same-sex marriage--and therefore same-sex divorce--are so new: 

-We didn't just fall in love. We fought to be in love. We fought our friends, families, neighbors, the police, the government, our employers, insurance companies, hospitals, guards, churches, and anybody else we had to get off our backs just so we could exist. You are kidding yourself if you don't think this constant pressure can be enough to kill a relationship. Yet we endured every fight, every day. We even fought each other about how to defend our relationship and ourselves without putting other people down. We believed that much in our love for one another. 

-When I got sick Julie had to fight constantly. She fought my family that thought it was in my head. She fought her family who said she could do better. She fought the doctors to be with me. She fought like hell because there were neither social nor legal structures to protect us. When Julie went through something I fought tooth-and-nail to stands up for her. I fought businesses, premiums, pastors, mechanics, whoever screwed with this beautiful girl. For each of the problems to which I refer, the only issue was that we were gay. 

The love of a same-sex couple is so politically charged and so publicly discussed that we were constantly scrutinized, whether positively or negatively. Everybody we met needed us to know their stance on gay rights. Such is the climate of the day and age, where we are gaining momentum more quickly than ever for marriage rights. It takes an enormous toll. The political charge of equality issues dehumanizes us by tossing us all into a big cauldron for the fire of human indignity to chap our asses.

June is Pride Month. During this time we celebrate how far we have come. We reflect on those we have lost. We mourn what the darker days have been like. The lucky ones manage to find peace with themselves after having been disowned by their families. And most importantly, we all organize so that we can fight even more, even harder. Until this year my primary motivator has been her. Always Julie and me. 

There is so much more, but I am wiped out from trying to articulate even this much. Without her, little of what I do feels like it has meaning or value. This is where karate comes in: the most important person in my life walked out, gave up, and lied about it. Sensei wrangles me in, pushes me back into class, and makes me face my challenges no matter how much it hurts. He isn't going to let me fail. And if he isn't going to give up on me, then I shouldn't give up on myself, even if my own wife did. 

It feels terrible to write what I am entering here, and puts a lot of pressure on my karate. But this is how things are in my life right now, and I can only hope that this suffering becomes meaningful by helping others connect better with the world around them somehow. 

My whole body and mind still ache for her; the departure was abrupt and catastrophic. I still haven't recovered. But at least I have a place to spend my energy. It's not good energy so I really need the safety of Sensei's watch to get it out and become stronger... by being more vulnerable. 

Divorce sucks. I never thought in a million years that this would be happening. If you have a spouse, tell them the truth. 

That Smell Was Me. Sorry, Everybody.

That stink in the dojo was totally me.  Sorry, everybody.  But it's an incredible milestone for me, believe it or not!  This blog entry will give you an idea of what I go through just to be able to get through an hour of karate.  It is worth every grueling effort.

For the first time in four years I have been hydrated enough to workout and sweat to the point that I get stinky!  No passing out!  It took five litres of saline coursing through my veins throughout the day, but I made it.

Why so much saline?  I had a training at work and the training room tends to get too hot for me (again, at which point I pass out).  I have to run IV fluids all day during training to stay conscious.  Then, I always run fluids during karate.  Today, for karate, I was plenty hydrated, so I had lots of stuff in me to sweat out.  Why not just drink water?  I do drink water as well, but I throw it back up, so I have to drink in very little sips throughout the day.

Yesterday I had a violent ankle dislocation.  I was sitting on the couch and felt my ankle slip right off of my tibia, getting stuck at a 90 degree angle.  It hurt like crazy, lost blood flow and swelled up dreadfully.  But once I got it back in place I wrapped it and now it's behaving like your average excruciating sprain.  No big deal in the grand scheme of things, just a bit of a limp and a lot of pain.

Still, a busted ankle didn't stop me from giving today my all in karate.  I had missed Monday due to 4.5 hours of medical appointments and a full work day.  I was miserable all night because I missed karate!  I wasn't about to miss today.  Oh man, I waited and waited, the day would not get out of my way fast enough.  When it's dojo time, I'm a giddy mess.  It's so exciting that I use cruise control the whole way so that I don't speed off in my car.

Tomorrow is my first shiai (tournament).  I hope my leg stays in place.  I've been wearing ankle and foot orthotics (AFOs) very strictly to try to keep the ankle positioned and the inflammation down.  My AFOs keep my bones in place similarly to an ice skate, and they are laced up at least as tightly as an ice skate needs to be.

Today's lesson was focused on neko washi dachi, or cat stance.  We worked on the 2nd kata of goju ryu karate, which is geki sai dai ni.  Sensei paired me up with Rafael, an amazing man who works with me to make sure I learn and advance, but that I take my time (descansa) and do it as I am able (como se pueda, poco a poco).  Today I got all the way through geki sai dai ni several times!

The hardest part of geki sai dai ni, for me, is the stomps.  My knees and feet always dislocate.  No matter how hard I try I can't seem to land right.  I don't know what it's going to take, but I need to get that under control.  Until then, I just stomp very gently, using a limited range of motion and a very light amount of force. But it does affect my focus and thus my performance.

When I work with Rafael I can immediately feel my confidence building.  He pushes me harder and faster, I work straight through a kata, I go full force and speed.  This man is quite an amazing coach, he runs around me to make sure I can see his face while he gives me directions and tips as I move.  I don't even know how he moves so quickly!  Surely he teleports like Raiden from Mortal Kombat.

But man, did I stink today.  The first thing I did when I got home was brush my teeth and shower.  Too fierce.  Great class.  Worth the pain.

Monday, June 3, 2013

Watch, and Do

"We are going to help you succeed. And if you don't succeed we're going to make you succeed until you succeed!" -Sensei Tony

Higaonna-Sensei has said in many a documentary that we are not fighting opponents, but rather, ourselves. Such is absolutely true. We are fighting our own frustration with ourselves, with our limitations, with the world around us, and our own ability to stick with it regardless of the pain. The pain can be physical or emotional, or a little bit of both, but the most important thing is to remember to have fun.

It happened again where I couldn't hear to keep up. I did my best but even though I stood in the front of the room so I could read instructor's lips I couldn't make out a word that was being said, and at the front and center of the room I had a nice clear view in the mirror of the fact that everyone else was doing something that I didn't understand. Neither was able to adapt the drills and exercises that I couldn't do because I didn't know what was being done.

Several times I asked the instructor to slow down or to repeat himself but it was no use for me. I struggled to understand, or at least to tune out. I thought for several minutes about this being what life is like not only for the hard of hearing but for anyone who does not speak a language that's being spoken in room, while others are perfectly able to understand. No instructor wants this to be the case and I could never fault anyone filled with such love and enthusiasm that it is hard for them to remember to slow down. Karate is exciting stuff and there is much to learn! But he is such a good instructor that I didn't want to miss it.

I finally noticed myself choking on the frustration and took myself to the bench, thinking maybe I could learn what he was talking about if I were just watching. It occurred to me that it might be less distracting for the other students if I just left but if I hid myself from sight because my differences are too hard for me to handle it sets a precedent that we are better off out of sight. Watching did not help. In fact I had so exhausted myself with frustration that I had nothing left to concentrate with.

Sensei came to check on me and I could barely even speak. It has been ages since I have been unable to speak due to something this commonplace in my life. "What's going on?" He asked.
"I can't hear and I can't do half of the stuff they're doing, I don't understand what is going on so I can't adapt it, I am so frustrated," I whimpered, as strongly as I could.
"Get back in there," he said, "watch and do."
"But I can't even--"
"Watch and do. Even if it's wrong, do it. Watch and do."

He was right, as usual. The biggest obstacle we face in karate is ourselves. We have to face ourselves in the mirror during drills, and during kata the invisible opponent is ourselves. I would be stronger by learning to face my frustration when I can't hear.

Sensei doesn't take no for an answer, especially when he knows he is right about something that will help another person grow. Moreover, he is my teacher, and I will always respect his instructions. He won't set me up for anything I can't do. And if it is too hard he will stay on me with support and positivity until I find my own way to succeed.

Back to the mats. "Sensei said so!" put a big smile on my wilted face. I could feel my eyes brightening up the expression on my face, the pull of Sensei's encouragement lifting their soggy corners.

I watched and learned in the back. It was a little easier there because I didn't have someone talking in my face whom I couldn't understand. When Senpai stopped to talk I let it go and focused on mindful breathing. I collected myself, having acknowledged that my teacher was right and I was better off facing the challenge.
But my place is in the front. The other students always make room for me up front so I can see the instructors' mouths. When I need to duck out for a break they do not fill in the gaps. They work patiently in their same spaces for the times I slip back through them into my spot. I did not want to go back to that spot today. Today, I had found a space in the back to collect myself.

As these stories go, it was not in the cards for me to stay back under Sensei's watch. He pointed to the front and nodded for me to go. I must have frozen. The next thing I remember he was right next to me, smiling and telling me to go. "Watch and do. SENSEI SAID SO!" he said with a laugh. I found myself smiling too, and I felt like I could have puked from the anguish of standing fourteen inches from someone I couldn't understand.
My family never taught us to speak Italian so that the adults could talk around the children. I have been so shapen by that and by hearing impairment that I have learned five other languages just to decrease the odds that I will ever have to go through that again. Here I was, facing that bit of family history that really hurt me. Their dialect was so beautiful, so musical, that I would have given anything to have spoken it with them.
But those days were over, I still can't hear, and I found myself up at the front-Sensei said so. Watch and do. Watch and do. Watch (pause) and do.

When my father used to hit me he would make me chant, "o-kay, Dad!" until he was satisfied with the volume and clarity. By the time I reached high school his standards had gone up and I had to say it for longer, and more clearly. I had to swallow the shaking in my voice to get it out and make him stop.
This was different. It was for my benefit. It was to make me stronger, to give me simple words that I could use to walk myself safely through my frustration, cajoling directions to help me ground myself. I wonder so often at the dojo, why couldn't my father have been like that? The answer is that he could have, and chose not to. But the point isn't even the comparison, for there really isn't one. The point is, it is nice to have someone apply gentle pressure to our wounds until the bleeding stops, be they physical or psychological. But the most special kind of bandage is the loving one that sticks with you while you get a nudge back into where you belong.

Watch, and do.

At some point in my life I will give up on hearing completely. I'm not far off. It's been three years since my ossiculoplasty and I'm still not getting the cognitive auditory processing I need to take the stress off of my frontal cortex, which spends way too much time and energy deciphering what might have just been said. When that point in my life comes I will have faced the fact that life will be just as it is today when I can't hear in the dojo. I will simply have to watch and do. I'll be alright.