Monday, March 24, 2014

Keep It Together

I could not keep my bones in place tonight. Pain all over, there was nothing I could do to get the pain under control which made it hard to focus.

Poco a poco. Little by little. I can remember now that every day was like this when I first started. I did two minutes of work and took three minutes to rest. It was a very slow start but I didn't care. Now I care because I am so into karate that there's nothing else I want to do. Still, I have to recognize that I have limits just like anybody else does.

EDS suuuucks.

Saturday, March 22, 2014

Zebro Warrior Challenge: 7 days to go

I once read on a sign at the New Carrollton D.C. Metro station that one pound of weight lost equates to four pounds of relief on the knees.

Just one week away from the end of March and the end of my Zebro Warrior Challenge, I am thrilled to say I have met all of my goals and then some!

It was a fair bit of reconfiguration for the entire first month, so I learned that quarterly challenges are better for me than short-term "burns" of exercise programming.  I had to adapt to sick time (a lot more of it than I had expected), going easy on weaker days, maximizing stronger days without overdoing it, the logistics of always having a clean gi and getting groceries regularly.

Those last two are very, very hard. I still need to figure out how to either get laundry and groceries done independently or get help with them. It's just too hard. Likewise, it's nearly impossible for me to clean pots and pans without pain and dislocations. I've squared away a lot of issues with Activities of Daily Living (ADLs) but these ones are just not options. Neither is vacuuming my stairs or my sofa.

How does one explain the legitimate need for an in-home health aid while also advancing in karate? "Self-determination" is the term for a person's right to choose, where in my case I am choosing my method of exercise as karate. It's so strange to think that karate, an aggressive and highly active art, is the most successful physical thing I have ever done. I have danced tap, jazz, acro and ballet; worked on stage crews in school and professional theatres; played hockey; ice skated; swum; played on the tennis team; done the gym thing, and run. All of these ended with very sad stories. Karate may well end the same, but never before has my heart been so fulfilled, nor my body so improved.

To be fair, physiotherapy is a part of my daily life and I am highly educated now about anatomy and physiology. I also have adequate access to medical care and protective equipment. I have the spoils of a support network too large to count. These are contributors to my success, but what also deserves recognition here is my dojo. My Sensei keeps a very close eye on me and if I miss karate it had better be for good reason. He holds me accountable, and I have beber had anyone look after me quite like he does. Sometimes I think he can see farther into my future with karate than I can. Other times we are both just praying that God watches over us all while I try a new thing with the body I have been given. Nevertheless, every day that the dojo is open I want to be there. I want to be learning, working, contributing, and growing.

By the time I was 18 years old I had moved 19 times, as I grew up in a household unstable at best. I have always ached to move back to my hometown of Buffalo, New York, but now I have finally found a place that feels like a home to me, and it is at my dojo. Nowhere in the world do I feel safer, more challenged, more centered or more focused. And now that I know what these feelings are really like, I will be able to recognize them when I have achieved them outside of the dojo. These are healthy feelings to have, and I have cultivated them over the courses of good and bad times.

Since I started karate, and thanks to this challenge, I have lost 50lbs. My pants are five sizes smaller. Maybe it's a little unflattering still, but I discovered tonight that I now fit into size 'L' t-shirts. (It might be more flattering than a baggy shirt, how should I know? I have zero fashion sense.) 50lbs is about five cats, think about it. Imagine carrying five cats everywhere you go, but without the snuggling and cuteness.

A weird thing about weight loss: my family is never as proud of anything as they are when someone loses weight. It's directly tied to self-worth. When I was young I heard a man on PBS say, "if you haven't noticed, I'm fat; that doesn't make me ugly or stupid." I think that man saved my self-esteem. I have never let my weight get in the way of my sense of self-efficacy or self-worth.

Since I have lost this weight my body is starting to take on a curvaceous shape that makes me feel incredibly self-conscious. I identify as genderqueer, having no claim to either the male or female end of the gender binary. I'm having trouble sorting out my feelings about my body as itself and my body as something with which society interacts. The pressure is finally so overwhelming that I'm dropping the subject for a while and trying to focus exclusively on health, letting my body shape develop as it may. In short, I just want to keep focusing on karate and getting stronger. I don't want my gender identity or expression to get in the way of who I really am. Who I am at my basest is pretty rad. That's good enough.

The most satisfying and exciting finale for my Zebro Warrior Challenge is that I have been invited to test for my 6-kyu belt in Goju Ryu Karate on 29 March 2014. That's five belts away from black. Two days from the end of my Challenge will be Spirit Training (where you train so hard on a Saturday morning the the only thing you have left to carry you out of the dojo is your spirit), my test, and a dojo potluck. Then I will have two days to recover from that and finish strong, ready for the next adventure.

I owe a great deal of thanks to Sensei Mike of Defensive Arts Dojo where I got my start in martial arts. He helped me design the challenge, set goals, and stay motivated. It didn't take much to make me feel safe, grounded and ready for this hard work. Here in Maryland, Sensei Tony has given me as much access to time at the Warriors of Grace Karate dojo as I could find, allowing me to practice during the day when the dojo was empty, to review and solidify my basic skills in the beginners' classes, to observe the advanced classes, and everything in between.

Life with Ehlers-Danlos Syndrome and dysautonomia is brutal. There is zero question. It should not be doubted that it is not as bad as it has seemed or that it is not a very real and disabling condition just because I have made improvements against the odds. The climb is supremely steep, with doctors not knowing what to do or what to recommend, assorted medical teams working rigorously to rehabilitate me, merciless stacks of paperwork and research, a bank account running on fumes from the cost of care, judgmental social pressure, and more. I am just writing this blog to prove--probably to myself--that this life, with all its hell, is still worth it. Karate is a wonderful adventure.

Whenever I get to heaven it will have a room that is just like my dojo, and I will have a body that can practice forever, with angels just like my fellow karateka on earth. I love them.

When I started karate one of the Sensei said, "I think you'll find that you belong here." Mission accomplished. I have never belonged anywhere as I do here.

Monday, March 17, 2014

Zebro Warrior Challenge: Two Weeks To Go

To revisit, here are my Zebro Warrior Challenge goals:

  • Strength
    • Work up to and sustain physiotherapy, 3 reps of 8, 3x/wk, with 1lb. weights
  • Endurance
    • 5 of each kata I know, two at full speed and power, 2x/wk outside of karate class
  • Stamina
    • Identify 3 easy energy, low/easy vomit foods that can sustain me when I am too sick to prepare meals
    • Eat dinner every night before 7:30pm

I am holding strong and making progress physically.  I'm still tired but now it's because I'm doing more, since I have extra stamina.  For the last few months I've been in a medically intensive rehabilitation pilot program.  The results have been satisfying.  Now I can perform some activities of daily living (ADLs) more easily than before, and that's a good feeling.  It helps me separate from my soon-to-be ex-wife and the things she used to help with--also the things we used to fight about.

With physiotherapy I've gone far, but I haven't been working with 1lb. weights.  I decided it's too hard on my joints.  I still practice my kata, that's been great!  I feel more confident.  I've advanced to also practicing my bunkai, but that's more study than active practice.  Stamina has increased and I've actually gotten the vomit under control!  I eat small bits of food throughout the day and my guts seem to manage that better.  It's hard to eat dinner before 7:30pm but overall I am doing a good job with it.

Two weeks remain in this challenge and I'm very satisfied.  It feels good to have set and achieved some goals for myself.  To celebrate I bought myself a gym bag and a yoga mat.  I've been using a bag I bought 12 years ago that is too small, and working on the hard floor at home.  The new bag is my favourite shade of green and has a handle on the side which makes it much easier for me to carry and manipulate.  It was less than $20 so I went for it.  I'll have it for a long time.  Once I clean and sterilize my old bag as much as possible I'll use it to carry some extra medical supplies in my car during the temperate months, just for safety and convenience.

Some more good news, I got invited to grade at the end of this month!  This will be my 6-kyu grading, and I am feeling more confident about this test than I have about any other.  It is still humbling to get the invitation to grade, but I have worked extremely hard for the last three months in particular.

At the intermediate level fighting is starting to get more realistic.  I appreciate this but it's scary at the same time.  I'm not afraid of getting hit or hurt, I'm afraid of having a flashback to growing up with fairly regular violence.  Something tells me that if it hasn't happened yet it isn't going to happen, especially because I am aware of it and taking care of it.  But there's no good way to eat a s*** sandwich, and this is something I'm going to have to work through.

More than getting hurt, I worry about how a fellow karateka will feel if they accidentally hurt me.  My shoulder dislocated when a classmate executed a beautiful block (jodan age uke) and they are still sorry about it.  I want people to understand that I am practicing karate to learn self-defense just as they are, that the enemy on the street is not going to check and make sure I'm okay when they strike.  I know people are aware of this, but they are caring all the same.  Luckily they are starting to treat me like everyone else, which is giving me the opportunity to grow like everyone else.  We just deal with the injuries as they come along, and I think that's good.

I want to be as good as I can be, but I can only get as good as I can reach.  If I am not reaching far because of fear, then I will never learn my real limits, and never will I have the opportunity to break through those limits, whether real or perceived.

At this point I'm very happy with my progress.  The Zebro Warrior Challenge has been a great success for me and I look forward to producing another adventure for myself.