Monday, June 24, 2013

Lie to Me

When I was six I was scheduled for a surgery on both of my hips that would have my in a cast from a waist down  and away from home for many weeks. My family was not allowed to visit except for a weekly "Visitation Day" that I believe fell on a Sunday. Apparently, my parents were planning it for a  really long time, with a quick procedure to have my tonsils removed being a requirement for the big surgeries. But nobody ever told me. Some of the most traumatic experiences of my childhood including waking up  alone in the dark thirsty  screaming for a drop of water, having my spastic hand tied to the railing and being told to urinate on myself happened in that hospital, yet nobody bothered to level with me and explain what was going on.  I was told, I was only going to be there a few days, with my parents there every step of the way. I guess my mother felt that she can avoid my getting teary and hysterical, but simply not telling me the truth. Perhaps she hoped that kids are resilient and whatever I was about to experience I would quickly move on from  and be done with. Maybe she didn't want to prolong the fear, the stress and the trauma of something that  in her mind she decided needed to happen. As a result I was left with nightmares for decades to come and an uneasy feeling that my parents are not being frank with me for the rest of my childhood. When I was even younger I was getting some kind of injections that was the approach everyone used with Cerebral Palsy, Thymus gland extract I believe. Perhaps it was because I was too young, but I don't remember anybody ever explaining what it was or why it was essential I got them. Not even in kids terms, like "It can help you walk" or "It can make you better". Things like that were never discussed with me. Period. Instead my mother preferred to build a complex charade in which she would by a collectible toy and give to the nurse to give to me. I even remember how she and my brother staged reading about it to me from a newspaper. Strangely,  at the age five or six, the article about clinics giving toys for injections made perfect sense. It might have made the trips a little more bearable and me a little more braver, but it does undermine the relationship I had with my parents a bit when I go back to reflect on my childhood. And it was part of a bigger problem whenever the issue of my rehabilitation came up. This institute, this therapy, that hospital. I was never made part of the decision process. I was either not  told, not asked or tricked in one way or the other. Perhaps it helped avoiding tantrums, but it gave me trust issues for years to come.

 The decisions about me were made not only without me present but also without me knowing how and when and why. I was the "child" that everybody talked about but never talked to. And it's an awful feeling. Like you're not only not in control over your life in any way, but you don't even get a say.I was rarely informed.  And I have to say- there was no discussion about my mother about anything she decided on when I was growing up- be it bed time or where I'd be sent off for the summer. How difficult would it have been to talk to me about it? Perhaps I'd disagree. Maybe cry a little. But at least I'd be recognized as a person - which through all those years I was emerging as. Maybe I'd understand if someone bothered to reason with me, acknowledge my feelings. That my opinions are valid.  I went on to say numerous times that my parents have sacrificed a lot for me and that there was nothing that they would not do. My mom has always been a great supporter. Yet I grew up with a feeling that there was always something going on behind my back I didn't know. That what I had to say didn't really matter. That I was just a kid. When I came to Budapest for the first time I was expecting a  trick. On that first day I was looking for an operating room which to my joy I didn't find. I love my parents. But how they chose to keep me out of the loop about all those matter I thought I'd understand when I'm older, yet I never did. I think it's much worse when you're stuck in a situation you don't understand because nobody took their time to tell you.

1 comment:

  1. Thank you for sharing, Ralph. I understand why you may feel that way. You bring up some very important points on helping the child (with or without a disability) be part of decisions that affect them. You really made me think about ways I can include my kids (one has cp) in our decisions as parents. I love your blog!