Goju Ryu Karate with Ehlers-Danlos Syndrome and Multiple Disabilities
Saturday, September 3, 2016
Teach Their Children Well
We don't learn about our students by their challenges, or even by their strengths. We learn about our students by who they are as people. We learn about our students by their names, by their interests, by the activities they like doing, by the things they're working on. Students of all ages have needs of all kinds. Some are the Autism Spectrum. Some pronate, others supinate, meaning their feet turn inward or outward. Students with ADD or ADHD move constantly. Other students with anxiety hardly move at all. Students with physical disabilities move a little more slowly or rush to get through. Students with intellectual disabilities may slide by undetected because they have excellent behaviour.
Someday I will be knowledgeable enough to be the Lead Senpai. Sensei is trusting us with the development of children in his charge. He is also trusting us with the majority of his income, his business, his livelihood. I am trusting myself to lead the children with a sense of healthy detachment, but constant presence. I well up with tears when they do well and I tell them so. Of course I do, I love them. I have so much love to give and this is an outlet for it, but it's not enough to fill the void.
Working with the children is the most mentally challenging way for me to participate in karate. Not only do I have to be on my game, but I also have to stow away the overwhelming grief that comes with helping other people's children, knowing at some point they will go home to their parents and families, but I've no child of my own. If I carry children it's a 50-50 shot that they'll inherit Ehlers-Danlos Syndrome. I have ethical concerns about both carrying and not carrying, and I'm on the fence. Sometimes the pain of this truth hits me so hard that I have to excuse myself to go and cry in my car. The emotional wave usually hits when I am also sick. At some point with running around I get sick and start blacking out from cyclic episodes of Dysautonomia/POTS and erratic blood pressure. As the nausea creeps up and my visual field goes in and out I remember that I'm sick, my heart sinking as I bow and walk away from the kids on the floor to recover out of sight. If I can't see straight I have to stop because I also can't hear at all in the dojo. It's a heavy thing.
How does it get so heavy on my heart? It would be better to focus on the children, on their needs, and on their strengths. My personal issues do not belong in the dojo, they should be checked at the door, tucked into the cubby with my shoes and car keys. Every Saturday, though, I come home with an ache like my heart is trying to hold up a dead piece of itself, trying not to miss a beat as I move on to the next activity. Every Saturday afternoon I spend a period of time in tearful prayer for those kids, in grief over the children I haven't got. I give thanks to God that I was well enough to help the kids and I pray to St. Jude for the children I can't help. I pray to St. Anthony to help me find the hope that I'll move through whatever lies ahead for me, children or no children. I pray for the resilience to accept my lot and move forward. But man, is it heavy: it is a brick I cannot seem to lift and assimilate into the wall of life experiences.
Saturday is a time of personal development for me, but I'm spinning my wheels because I had been expecting a family by the end of 2013. My first-born would have been 2 by now--walking, wiping snot on things, learning phonics, learning social skills. Instead I grieve like we had actually gotten to the point of conception and we'd lost it. (We were a little over a month from starting the process when my wife left). I grieve like there was a baby, not just a plan for a baby. I grieve at the memory of all the videos we'd made for the baby about how we really wanted it, how we looked forward to it, what our life was like before the baby. I just grieve. It's a deep ache. I've been able to let go of my marriage, but the baby is a cold and frozen feeling that won't be shaken or even soothed. The personal development is in learning to accept that pain, learning to not let it knock me over, learning to not let it influence my work with the children at the dojo.
It would be much easier and far less painful to work with the adults, but the dojo needs more help with the children, and avoiding the problem does not solve it. So, I try to see Saturday as an opportunity to grow and find peace with it. I don't think there's anything harder I do in life than try to get through Saturday.
If I had children I'd struggle to hear them or they'd need to sign. I'd be tired and they'd have to play with each other. They'd have to care for each other when I'm sick. They could be or get sick themselves. But they'd have so much love. They'd have support, education, hope, faith, strength, and integrity. They'd be creative. They'd be loved, and they'd love themselves. They'd work hard at everything they do, including karate. They'd be just like the children at the dojo.
Saturdays are the hardest days of the week for my emotions to navigate.
Thursday, April 10, 2014
On Self-determination, Anxiety and Guilt
Working from bed sucks. I want my bed to be for reading and sleeping. I'm glad to have fought for the ability to work from home but I'm frustrated to be so limited in my own home.
It's one of those days where I've been awake for hours and haven't the energy to even brush my teeth. Just trying to stick to the schedule and pace myself. The pain is sky-high and the anxiety follows suit if I don't keep actively reminding myself that there will be better days.
Sensei called to ask how I'm doing and I am very grateful for the call, it was nice to hear the voice of another human being. On days like this when I had physiotherapy at home to look forward to I had a little help starting my day, and then I had the rehabilitation help to try to get my pain under control. It left me better able to function, which translates to being able to function at all. Now I don't have that and it's tough again. This can get depressing but I am trying hard to remember that I look forward to better days.
Tonight I have karate. Here is the thought process:
-How will I get there?
-I'll be up by then, but will I stay up?
-Can I go all out since I will be going right back to bed, or will my blood pressure destabilize?
-Should I use my crutches?
-Should I bring my blood pressure cuff?
-Will I be able to work the day after?
-Would I be able to work the day after anyway?
Karate is a part of my exercise regimen and a human right of self-determination. It keeps me healthy by giving me physical improvement and emotional connection with other people.
Someone asked, "what do you look forward to?" And the answer was karate. I've pined on this question for a month. That's the answer. It has become a need, part of my identity. A very positive part, curiously compatible with my disabilities.
I may not last in the class tonight but I am compelled to be there. It's a good thing, and no one need ever feel guilty about a best effort to take care of themselves.
