The Mutant Speaks!

Most of you already know that I am the only one in my family with O.I. When I was born my parents opted to not have the genetic testing (skin biopsy) to find out which side the gene was on. As a child my parents explained to me that knowing where the 'cause' of the O.I. came from didn't change whether or not I still had the condition, and I grew up being okay with that decision. I still am. I suppose that for the most part I am someone who would prefer to learn how to adapt, manage, or solve a situation as opposed to being curious about the origins of the problem. At the end of the day I go to bed still with the O.I. but I learn each day how to deal with it.

With that said, to my knowledge, I am a mutant. A genetic mutant. Growing up the Teenage Mutant Ninja Turtles were wildly popular among kids and I loved them. (I even dressed up as one for Halloween.. the picture is somewhere..) Rafael, Michaelangelo, Donattelo, and Leonardo were my buddies and it wasn't just because they loved pizza as much as I did. Or taught me to say "cowabunga!" It was because they were the first to make being genetic-errors cool. They were mutants too, the closest thing I had to people who were 'like me.' They were my mutant role models.

When you're a child you lean on your family and parents to show you how to be a person. Everyone comes from some perspective, rules, ideals, values, culture, or some understanding of the world/society in which we live. It is through this construct that our parents and family raise us. If a child is black their family teaches them about what it's like to be black; if they are Eskimos a child is shown how to survive as an Eskimo; if a child is born into a family of politicians they quickly learn about life in public office. But when a genetic mutation happens it means this is a child that has something no one else in the family has. Who does the kid lean on? Who is going to tell the child about the perks or pitfalls? Who serves as the role model? Who is going to show him or her the ropes?
For me much of that was whatever I was surrounded by. Whether it was the Teenage Mutant Ninja Turtles or Roald Dahl's Matilda or Wheels (the wheelchair character from the Burger King's Kids Club).. I learned early on that I couldn't expect my parents or family to have all the answers for me. Other kids might be able to go home and ask their parents why they don't celebrate Christmas and have a Christmas tree, but I couldn't go home and ask my parents "how do I tell my friend I can't go to her gymnastics themed birthday party?" Or "How do I tell my friend about what a genetic disorder is when we're only just beginning to learn the song 'heads, shoulders, knees and toes..knees and toes'?" Well I COULD ask them these questions, but I already knew they wouldn't be able to help. They just wouldn't get it. There were a lot of other situations where I was at a loss in. Who was going to show me how to dance in a wheelchair with that boy at the middle school dance? Who was going to teach me about wheelchair sports? What about all the politically correct and incorrect terms that differentiate a disabled and able-bodied person? How do you open doors with one hand and push with the other? What do you do if you can't reach something and no one is around? What happens if I break a bone and no one is around to help? I am sure that there are a lifetime of these situations that I could list, and I know that these are situations that I will continue to find myself in - questions that I will continue to discover answers for on my own.

There is no doubt in my mind that I wish I had met someone else with O.I., or someone else who used a wheelchair earlier on than I did. I think it would have made a lot of things easier for me, both logistically and socially speaking. But this doesn't mean that I resent the rest of my family for having missed out on this mysterious gene. When I was a kid and was fracturing more frequently (at least once every 4-6 months), when all of the commotion was done and I had gone home in my cast - I used to wish that at least ONE of my parents had O.I. too. Maybe that way they would have been able to warn me about how much it would hurt, or maybe that way they would know the most comfortable way to be picked up when you have a fracture. But no, instead as a kid I was always the one screaming my head off in the cast room -  crying because I didn't know it was going to hurt this much, and because I didn't know when it would stop, and because no one had shown me the way first. Maybe it would hurt less on that hospital table if I knew one of my parents had also felt the jagged burn that comes with a fracture... and then had grown up to raise a family, to have a life, to have survived the ordeals.
But these are thoughts that I would never allow myself to think too long on. I would immediately begin to feel guilty. What am I doing? Why would I wish this on anyone? Sure. It's true that I have managed and have done fairly well with my life, but that doesn't mean that I would want to put anyone through the same situation. Having non-disabled parents and family members is the only family that I've ever known, so of course I wouldn't trade them for anything! In some ways having unaffected family members has forced me to adapt earlier on, and to push myself to 'be like them' (and the majority of the rest of the world) as much as I am able to.

Here's a take away thought: Being a genetic mutant shouldn't just be limited to super heroes or medical labs. For me it's a way of life; it's a way of life that I do my best to live and it's not something that I think about constantly or even daily (or monthly). I live like anyone else does, I have the same questions and life challenges that you do, and in the mornings I put my pants on the same way that you do. After all of the differences that being a genetic mutant may come with - I would argue that there are a lot more similarities between me and the rest of the world than whatever lab tests may reveal, and that is how I continue to proceed.

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