Once Per Calendar Year

Sensei smiled and gently said, "once a year, you're allowed!" I bought a dojo t-shirt because I was so excited about getting to go to the dojo that I forgot the top of my gi!

It was very embarrassing and hard on my body image. I've lost a lot of weight and my skin drapes off of me. When I punch, a sheet of skin flies forward very painfully and then wrinkles backward. The whole mess was very distracting and I felt awful. A dermatologist referred me to a plastic surgeon after saying, "I can't believe you really want this done, knowing how terribly your skin heals." So I had that going on my head all night. I hear it in my head every day, too. The pain is worse than the embarrassment. It's just so grotesque--it's not shame that I've lost weight and my skin is loose, it's just so gross looking to watch it slide around me, and watch it catch on equipment, that I hope I never, ever forget my gi again.

I hate EDS and today has been one of those days where it's very hard to resist that hate and anger. I spent the day resting my body so I could practice tonight. My roommate helped me get started and have me a lot of encouragement. I appreciated that. A lot.

The t-shirt was form-fitted and it finally occurred to me that I really have lost a lot of weight. My femaleness is showing through in my chest and I was extremely self-conscious, even though my chest doesn't stick out in my super tight sports bras. I got through that by accepting the following truths:

1. My dojo has accepted everything about my body from day one.
2. My dojo treats both genders equally.
3. My dojo acknowledges that we all have challenges.

Therefore, I will respect myself, too.

Zebro Warrior Challenge: Update!

Finally, an update!

I got hurt and it's taken a long time to recover. I am doing my best in the dojo to keep up physically. At home I had to adjust. Now I just do physiotherapy at home and read about karate. But I am still working on eating well and that is actually improving a lot! I have already been eating carefully for a long time but now I can do it in a way that reduces reflux!

I'm just a single pound away from my weight goal, more than a month early! The question is, do I set another weight goal, or focus on something else? I haven't really done anything specific to work toward the current goal, it has just happened naturally because I have focused on good nutrition. The only reason I even noticed was that I happened to hop on the scale today. I usually don't. With EDS my weight can fluctuate by more than seven pounds in a day. I would drive myself crazy if I chose to worry about my weight.

In any case, it was a nice discovery.

Heaven Room

"Die when I may" (to use Lincoln's words), my heaven will have a room that looks just like this. To me, the sun shining in over the mats says that God watches over us.

Geki Sai Dai Ichi - Renzoku Bunkai

Today's instructing Senpai got creative and asked karateka who practiced other martial arts to demonstrate a kata from that other practice. I got to see a Tae Kwon Do kata and a Shorin-Ryu karate kata, both for the first time!

If I heard the Shorin Ryu karateka properly, I learned that Shorin Ryu kata are designed to be performed within a small amount of space.  Self-defense work in a small space appeals to me because any movement made without full extension of a joint is a better move for someone with EDS.  The footwork was slow and controlled, while the upper body movements were abrupt, and seemed to rely on what could be done with the feet firmly planted.

The main skill we worked on was Geki Sai Dai Ichi Renzoku Bunkai, which looks like this:

It was a lot of fun to watch myself get better and faster at Renzoku Bunkai, which is the application of a kata performed in a straight line.  It feels like a dance of sorts, I enjoy it.

Technically speaking, Renzoku Bunkai helps me with regular Bunkai in that it helps me think successively about how each movement fits into the overall kata, as well as into direct application.  It bridges the gap between the two, and I think it was a brilliant design to add to the practice.

The dojo is my safe space and I go there no matter what.  We are always redirected to karate if we become distracted or upset.  This happened twice today to me.  Once, during Sanchin drills, I became very upset because Sanchin involves very powerful breathing techniques, and I got flooded with feelings for friends of mine and people I care about who do not have functioning airways.  I felt a whole lot of grief at once.  The second distraction was just that I had become tired, and lost track of what I was doing.  Out of nowhere I started getting upset about my new friend who is on her way to immortality as I write this.  I had to step out and check in with my Sensei, who pinched me and reminded me that, although I was sad for her, I was alive, and I should be living.  My Senpai, with whom I was working on drills, helped me by very directly saying, "Okay! And now we're focused again, aaaand go!"  Shockingly, it worked.

I particularly enjoy working with this Senpai because he has clearly worked on becoming focused, on staying deliberate with his movements, and he is acutely sensitive to the people he is working with.  This makes it very easy for me to let go of everything else in my mind and engage strictly in what's in front of me.  It also helps that he has excellent pacing, so I get a little faster, stronger, and more fluid, by working through.

Suffice to say, I learned a lot this morning about myself: staying focused on what is in front of me was a good lesson, as was speeding things up when it was time to raise the bar.  When I got home it was time to slow down and take a break, but I was so pumped up from karate that my roommate had to remind me.  Then I slept for four hours! 

While You Have Time

"While you have time, go live, because when you're lying in that bed you're going to want those memories." -World's Greatest Physiotherapist, Kelly

Warning, this post is a downer. I'm not sure what I need right now, but to be heard. Something like eight people with EDS / Chiari-I Malformation entered immortality this week. My sunken heart is with their families.

I was raised to not feel badly about death, so long as the person knew I loved them, because it meant that the time was not wasted. But I was never given the tools to contemplate my own finite existence, and I don't know whether anyone ever really is.

At this point my cerebellar tonsils are within normal limits and the dysautonomia is manageable with a port that feeds me a very uncomplicated chemotherapy of saline and magnesium. This will not always be the case but I'm fighting like H-E-Double-Hockey-Sticks to not only slow the decline, but perhaps to improve as well. All the same, when EDSers are dropping like flies it gets to me in ways confusing and frightening. Not only do I feel sick outside, but I feel ashamed inside when one of my early thoughts right after "May they rest in peace" is "wow, I'm really lucky that it wasn't me this time, or so-and-so, or so-and-so, or...." Even though I think this is a natural reaction it makes me feel irreverent, and I am sorry for that.

In my appeal to join the dojo on Day One I was honest, sharing that I had been terribly sick for three miserable years, that I was afraid I didn't know whether I had much time left, and that I just wanted a chance to follow my dream of practicing karate. I do think, especially now that I have grieved my wife and the child for which we had been planning, I want (read: need) to live doing what I love. I love karate.

This terrible physical existence, cruel mindf*ck, EDS life, cries for a space and time where it can just be, exactly as it is, where I can accept my limits by breaking through other barriers that aren't really limits.

Forgive me for this disjointed post (pun intended), I just need to clear these thoughts. They belong here because they are an authentic part of my experience as a karateka.

Every day with EDS is a terror. My body is better because of karate, but EDS will always be a terror. It's nice to hear now and then from people about how I don't seem nearly as diasabled as I did when I started karate.  But my disability is not going to go away, and it is not a shameful thing that I have to get rid of to have a disability. Even if I did want to hide it I would not be able to. Accepting my body for what it is does not involve a process of finding ways to seem fine. Accepting my body is a process of learning what it will and will not tolerate by continuously trying new things. With karate there are a million ways to perform one kick, so I can practice for as long as my legs will work. I will never run out of things to try and that is a treasure. I just want to live, and keep trying. Just until I can't.