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.