Sunday, June 16, 2013

Walkin' on sticks

It was Thursday night. I was having dinner with a friend at a local trendy restaurant, The Top, which is a bit of a weekly tradition for us, when I noticed a girl at the door, walking with sticks, wobbling a bit from side to side. She was about to leave. My friend struggled with whether or not to open and hold the door for her, while I couldn't get over the fact how much she reminded me of myself when I had sticks just like that. It wasn't the most graceful way to walk, but I was glad to be moving forward. At least she wasn't wearing leg braces, which I guess has to give more of an ease and speed. I did. Mine were made of metal and straps and locked my knees in a straight position. My legs were heavy and with every step I had to transfer my body weight from step to step, drawing the movement from the hips. The amount of work you needed to get me in those things every day was extraordinary. It wasn't quick and easy. My parents hoped to have me in them  all the time, that's why after some time we got a model you can theoretically sit it, while you eat, study and rest waiting to walk again. But sitting in it was uncomfortable as the metal rods screwed into my shoes brushed against my feet and they were heavy. As years passed, the spasticity in my legs grew you needed more and more strength to lock the mechanism with my legs straight. It was something you needed to brace yourself for. By the time we were fourteen there was pain, screaming, sweats, it looked like I was going into labor and you needed more  and more people to make it work. As years went by it also became more scary. I became more aware of the fact that I'm standing tall on braces, with all this added metal weight struggling for balance. And how easy it is to fall. And I did a few times. Once - backwards, which is impossible to recover from and get yourself back into position. Nothing happened but I did bruise my tailbone and from that point on I was too afraid to walk around without assistance. I'd start to shake as soon as my mom walked away. Many times before that my stick would just get away from me, because the rubber tips of sticks would slip on polished surfaces and worn out carpets. For balance I would have the sticks at an angle, always away from my body pretty far from me, pretty much like the girl at the bar. At the Peto Institute they taught me to use the sticks with a bit of an ease an finesse. I  was able to lift one of them up, do things like press the elevator button and I was even starting to learn to lean on one stick. Still not much you can do if I was falling backwards, because the braces made me feel like a giant statute.  At some point it becomes automatic, you stop paying attention. I would go through the list of the things in my head of what I want to do, imagine great adventures, all to the rhytm of stick, stick, left  leg, right leg. It would even sing, much to my neighbor's dismay. One lady, whose window I'd pass every morning while walking in our Budapest neighborhood gave me a chocolate bar to keep me quiet.

Braces....It was never practical for me to wear them, because I could never get them on without assistance and it would  never be safe to try to get out on town walking in them. It was exhausting and I was much slower than I could ever be in a wheelchair. I was never quite sure what the end game was. I guess to help me develop balance, because it would never get me independent. At the Peto Institute I'd be in braces for a lot of the sessions in the day. At home, my mom would make me do ten rounds around the apartment every day.  At the Warsaw's Children's Health Center Hospital, they tried to get me to bring my sticks closer. The smaller angle would probably give me more safety, allow for a better body weight distribution and help avoid incidents with slippery floors. For some reason I didn't feel secure. Seeing that girl Thursday night triggered some feelings and memories from Budapest. Should have stayed the course and be in those braces? But how? Would it have even been possible? Would it be practical? Could I be like her? I was watching her as her friends came from behind and open the door for her while mine was trying to decide  it was proper for him to do so. She seemed determined going forward, energetic and made no fuss over the fact that with every step she's risking a fall. And her whole body is in motion, getting a workout. Her knees were not exactly straight, but she was making it. Isn't that the point? As I was looking at her leaning from side to side, surrounded by friends, not the fastest way to get around  I thought- good for her.

1 comment:

  1. Hey,
    This is your second post I read (the first was about the book ...) and now I'm sure I would want to read it!
    When I am with the kids I work with (I'm Studying to be a conductor in Israel) I do not think all the time about their hard work, and sometimes fear or pain, I think about what they are going to benefit & I think it should be always in the back of my head… that's way it was important for me to read how you felt, as a child & surely now in re-perspective. So thank you…