Tuesday, March 6, 2012

The hospital trauma

I ended up going under the knife a few times when I was little. My muscles and tendons were becoming stiff and needed to be loosened so I could properly move, but still you couldn't not get an impression that some surgeons believed that you can "cure" Cerebral Palsy with a scalpel. It was a trend to operate on spastic children as early as possible. The hips, then under the knee and the Achilles tendon above the foot. Every time you would experience the ordeal of being in a hospital by yourself for many weeks over again. Sotirow was the name of the surgeon that every parent wanted to get. He was some kind of Eastern European medical celebrity, a doctor visiting from one of the other communist states, can't remember which one. He believed that they needed to operate on my legs as soon as possible to prevent me dislocating my hips. I wasn't walking so I doubt that was ever a possibility and I think he actually convinced my parents that after they correct those "defects" I would walk.Fixing me through orthopedics.  I was six when they opened me up for the first time and I can't describe the loneliness and the physical pain that haunt me in my dreams till this very day. I didn't know what was happening, my parents were not allowed to see me but on the weekends and I was very afraid. When the lights go out and you hear nothing but silence coming from the hall in a bed that is not your own and you try to look out through the Snow White painted mosaic window, you feel helpless and abandoned weeping at night. I woke up in a cast waist down, with my legs spread, separated by something that looked like a wooden stick. They've put some corrective metal plates or braces in my legs and weeks later they've sent me home. Then they had to do it over to remove it. A hospital is not something you go through and forget. Some of it stuck with me till this very day. My parents were not allowed in because the doctors had a policy against it.  Why, I don't know but I experienced no warmth and no comfort there. I suspect they wanted a highly disciplined ward.  When my mom asked the nurses to watch my spastic right hand they bandaged it to the bedside rails. When another didn't want to be bothered with my requests for a bedpan she told me to pee on my myself. I was only six, things like that stick with you. I remember waking up, feeling thirsty, not being able to move. My legs were in pain, it was itchy under the cast and the stitched area wasn't healing up very well. As I grew the marks became longer and bigger and uglier and still are very visible today. I also brought chickenpox from the hospital. Can you imagine, being at home, not being able to move or scratch yourself, sleeping in a fixed position waiting for my mom to do every single thing? I recall my dad was abroad.

Years later, the attitudes changed. When I was twelve and participating in one of the rehabilitation summer camps I was told that cutting in all three places changes your centre of gravity and should not be done. We never did the knees or the Achilles. My mom felt she couldn't have me go through it again. During what seemed like forever in the cast I gained weight and one of my legs became longer than the other. It was more difficult to exercise as a result. It feels to me like I was a subject of some experiment on corrective surgery that damaged my psyche for life. How can you fix something in my brain with leg surgery?  Isn't that just a silly idea?  Not to mention that they missed a few of the stitches and I had to go back to have them out. I noticed them before my parents did because the area was quite sensitive, I just didn't tell them. I was that afraid  of the pain, of the place. When I was visiting the facility just 5 years ago looking for options to limit the contractures in my legs all those memories came back. When I was laying on that X-Ray table, where they took me over and over years before I was that kid again. I felt like then when I was naked and ashamed and a person was telling me to relax from the other room. And all my fears came back. I think my childhood was more scary, more painful than it ever needed to be. And some of it will be with me forever. A child's mind is delicate and surgery is always invasive. At  least now they're not as eager to cut. And it wasn't just a Polish thing. I've seen many kids with visible surgery marks when I was in Budapest. But, times change.  From what I understand, they use toxins now to paralyze specific muscles and avoid surgeries until it is really necessary. But they do one one more- to stabilize the feet to prevent them from turning inwards as you take a step.  

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