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. 

ACHIEVEMENT UNLOCKED: 7th kyu Green Belt

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.

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.

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.

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.

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....

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.