I'm writing this entry to invite able-bodied, neurotypical karateka into my world. My goal is to help improve upon the understanding of all the "inspirational" videos of people with disabilities performing as martial artists, under the impression of "NO EXCUSES" being the reason we do it, when really we all have our own motivations, no matter our level of physical, intellectual, or emotional function.
These are some of the thoughts that go through my head when I'm sick. It's been three weeks:
My body wants to turn inside out. I just know it. Nowhere doesn't hurt. Even my eyelids hurt. Why? No idea. Just hurts and feels gross. Anxious about teaching tomorrow. Trying to sleep it off isn't working. No way out today, just gotta go through. :( Lonely sad anxious sucks sucks sucks. Wish my PT were here to help me.
Oh..uh..Hello, Mr. injection. I didn't see you there among the other vials. How long has it been? *fail*
Bending fingers backward beyond reason is both a violent self-defense skill and a medical diagnostic test for Ehlers-Danlos Syndrome, the Beighton Score.
Meds for the muscles. Cream for the skin. Vials for the barf. Fluids for the brain. Sometimes I think it's all potions and snake oil, until I stop taking it or don't have it when I need it!
It's not even pain, exactly. I can't explain it but I need it to stop. It just feels like maybe a hyperbaric chamber might help? Like my muscles want to crawl away from my bones. All kinds of terrible visualizations come to mind but none quite explain how bad it feels. I've got everything I need except relief. I'll be so happy to be on the other side of this! If I could, I'd stuff myself into a crockpot and set it on low to let these muscles melt away from their fascia and bones. (Whoa, that's heavy.)
Work would have started 17 minutes ago. Not today. Nope nope nope.
Well, bowel and bladder training are paying off. Thank God for small favours.
Well, I guess the benefit of being sick and not wanting to eat is that I met my weight loss goal 6 weeks early.... Just oats, salsa and broth, mainly. My weight will soar when I start eating solid food again. EDS suuuucks. But I'll be okay!
My bed has seen too much of me. But I'm afraid to go out alone for fear I'll be too exhausted to drive home. I'm afraid to do much of anything because I'm so shaky, even PT. This is a time to be mindful, to know it'll get better, and to practice calmness. NOT MY FORTÉ!
------
I'm grasping at humour to keep things positive; reaching out to anyone who will send an encouraging word, which I seem to need above my own voice at times like this; relying on meditative and faith-based techniques that work for me when time are better, and remembering that this is only temporary.
I've been doing 100 Mawashi geri (roundhouse kicks) a day until I get to 2015, which keeps me oriented toward getting better so I can participate in karate as fully as possible.
Higaonna-Sensei suffered an aortic dissection, and survived! Many pepe with Ehlers-Danlos Syndrome die of aortic dissection, and there have been deaths in my family from aortic aneurysms, so it has frightened and upset me a great deal. I've never been one to worry about death, but I'm shaken up by the idea that other people can survive aortic dissection. I don't know enough about it to process the whole thing, really.
I'm praying for Higaonna-Sensei's recovery, which I know will be slow and difficult. I wish I could be beside him in Okinawa to tell him he is amazing, inspirational, and that I feel for him.
When I'm sick, I'm stuck alone in bed with just my own mind. It can get like a bad neighbourhood, not a place I want to hang out by myself. So I need to reach out. Other people may not, but it helps me. I'm a social being, whether I like it or not, and even though it drains me I need to put myself around people. Sometimes I don't even have it in me to invite somebody over, and that's one of the roughest spots to be in. When I have home health care it's easier because the appointments are set up ahead of time.
It makes a very big difference when someone comes to my house and works with me on my body's needs for that day. It increases my chances of being able to do something independently later. Today, I couldn't even fix a bowl of Cheerios, and I'm not hungry, anyway. But after working with my PT I'm usually upright and ready to eat. She always offers to help me fix something to eat, but by the time she's done working with me I feel ready to do it myself.
This is the part of my life that I'm terrified of, being reliant on other people for help with Activities of Daily Living (ADLs). Needing basic help with ADLs is incompatible with my other life activities like working full-time and practicing karate. It seems like if I'm able to do one, I should be able to do the others, but it's not always the case. Maybe I can work on that right here, right now:
It makes sense that I can sit and teach a class on some technology that I already know well, but can't get upstairs to heat my lunch. But to practice karate is hugely physical, so why is it so much easier?
1. In karate there's no equipment to drag out, or to wash and put away.
2. It's easy to dress for karate.
3. I get ample time to warm up.
4. The space is flat and I have immediate access to my medical supplies.
5. Almost everyone in my dojo is trained in first aid, and everyone knows about my EDS and Dysautonomia. Better still, they aren't afraid of it.
6. The dojo is a therapeutic environment which fulfills my need to interact socially.
7. I can take all the breaks I need.
That looks like a good list, and helps me understand why I'm able to drag myself to karate when I can't even bring myself to eat. ...Right?
------
The picture attached to this post, which says, "Zebra Strong," refers to the mascot of Ehlers-Danlos Syndrome, the beautiful and exotic zebra. It's the mascot because there's an old medical school axiom that goes, "when you hear hoof beats, think horses, not zebras." It's teaching future doctors to think of the common things first. But the assertion with EDS is that "zebras exist," meaning that the exotic conditions must also be examined and screened.
I'm a strong zebra, and I'll get through this.
No comments:
Post a Comment