As the fireworks boomed and cast shadows in the dark last night, I took a moment to reflect on ‘independence’. It's an ideal for our country just as it is for the individual. I thought back to my post from a full 3 years ago, Independence (One) Day, in which I'm standing with my Dad's help for the first time since, well, probably since I was a kid. (I had stood a lot before, but only with trainers in this way.) My spinal positioning is moderately horrendous and I have essentially no control between my hips and ribs, but the point was I’d just barely begun to find a way to take therapy out of the gym and put it into my life. How can this movement become a part of me?
Especially in light of my recent announcement about returning to MIT, it’s useful to think about how things have changed in ways I did and didn’t expect.
One huge aspect is that my body now is not where I thought (back then) it would be when I returned to school. I thought idealistically that I’d be much further along toward standing and walking. In my ignorance, I had no way of mentally filling the gap with all the things I’ve been able to do since then, and before managing to stay upright reliably on my own, to stand up. It has been an ego-check for me to realize for myself that I’ll be far better off in the long-term if I head back to school before I feel I’m truly ready (which, to be honest, would probably be never).
A critical topic relevant to independence has to do with simply moving. I visited a fellow SCI-recoverer friend recently to brainstorm some home exercises in order to find a little more activity and feel a little better throughout the day. We talked about movement skills which on a daily basis for me fall into three broad categories:
- sitting statically in a comfortable position
- moving to feel good
- moving to connect more deeply
To me, these underpin what it means to be happy in my body, or at least to eliminate the distraction of discomfort. I can do each on my own now, but I used to need help with all of them. They build sequentially on each other. As I think about my being ready – or not – to head back to school, it is these simple categories more than anything that give me confidence. More than my independence in getting around, in daily tasks, or in traveling, it is my independence of being happy, comfortable, and connected to my own body that makes me feel ready for what’s next.
Back at my friend’s place, we started with figuring out what was preventing sitting in comfortable posture. It’s basic, but so fundamental for those of us who use a wheelchair and who have limited trunk control. After assessing and discussing finer details of specific pelvic positioning, cushion support, and thorax placement, I heard a couple days later that this simple awareness made a big difference – my friend just felt better. I think of this as a part of true ‘independence’: coming from the inside.