Showing posts with label osteogenesis imperfecta. Show all posts

Unintentionally I got into a conversation with a group of fellow OI'ers about when they were ready to 'deal with it.' That of course being O.I.
I find it almost unnerving that many of the adults I have spoken to have all said a similar thing: "it wasn't until I was 30" or "it wasn't until after I was done with college" that 'dealing with' being an individual with O.I. was something that needed self-action. That is, more action than the splints, casts, x-rays, surgeries, rods, physical therapy etc already required on our part. I have also heard many folks say: "when I was a kid I wanted nothing to do with anyone else with O.I. or even hear the words O.I." And when I was younger I was much the same way! Mom would try to nudge me to talk to the other O.I. in the waiting room and I just rolled my eyes.

There are no credentials in psychology or sociology after my name and nor will there ever be. So I don't feel like I can really comment on why this pattern occurs in any official way.

After a fracture happens and it has been set in a cast or a splint, my attitude is basically: just as hair grows after a bad hair cut bones will heal. As a child it was easy to see through this 'OI lens' because that was my only job - to interact with the world that was no more than three feet in front of me. Anything else farther than that, or required any more depth was the responsibility of the adults in my life. I didn't have to 'deal with it' then because I didn't see anything else that needed to be dealt with!

What was frustrating was when others around me, those who had 'come to grips with' my diagnosis for themselves, acted on the assumption I was at their level of acceptance. I know, it is probably weird right?
Obviously a child with fragile bones should know why her parents are concerned about the first time she is sleeping away. Obviously a child with brittle bones should know why her teachers won't let her whip water balloons with everyone else on field day. Obviously a child with O.I. should know why going to the gymnastics birthday party makes everyone walk on egg shells.

But that's the thing - it's not obvious to a young child with O.I. if she doesn't realize it. At least it wasn't obvious to me. Until something happened, until that fracture was burning through my skin it wasn't obvious to me anything bad could possibly occur! If it didn't exist in front of my face then it just didn't exist at all. This was especially true when what existed in front of my face were friends and classmates who launched themselves at each other.

And this is why I'm glad that I was able to come to terms with having O.I. on my own. Well, okay.. life events definitely nudged me along... but still: I am the one who decides when and how I want to 'deal with it' these days. Adolescence happened, and that meant I couldn't get into fights with my parents about borrowing the car like my older brother did. College happened and that meant I had more research to look into than just whether or not my major was offered. Employment happened and it meant I had to worry about more than just showing up on time for my interview. These are all markers and life events that let me grip onto another piece of O.I. each time. Eventually the depth and field of O.I. expanded and I came to understand how two letters fit into my life, and the community that I carry day-to-day activities in.

On some days this line of sight I've got is very clear and on other days it's not so clear. Some times my grip on O.I. is firm and I clutch it close to me. Other times I'd rather fling it off the highest mountain and not bother seeing where it lands. And still other times my grip slips and I lose sight of it completely. Whatever happens though I'm okay with this knowledge: it is always ready for me even if I'm not ready for it.

As one of the lucky ones who managed to wave a red flag with a large question mark while in womb, I probably don't realize how lucky I am (or was). The doctors who caught sight of fractures and healing fractures in an ultrasound were alerted that something was up. From there I imagine a plan was set into place, possibilities were considered, tests were proposed, and above all caution was urged towards its slow plodding momentum. Mere days after I popped into the world that red flag had toned down its alarm, there was now a name for the little piece of land I claimed: Osteogenesis Imperfecta type III.

Having spoken and met with many other O.I.'ers I know that this isn't the experience for many of you. I have read the other blog posts about babies who are taken away from parents accused of child abuse. I've seen the frantic facebook posts in many of the O.I. groups from parents, grandparents, aunts & uncles of those crowd-sourcing for resources to come to a diagnosis faster. Heard from parents about the months their family spent waiting for the results from the battery of tests, realizing that any result would bring some relief. All of this for the sake of a diagnosis, for clarity, for a label, for a definition, for answers that are a little less vague.

When people ask me if it matters whether or not they refer to "the thing that you have" as a condition, disease, illness, syndrome.. I am quick to respond "yes it matters a lot to me." Because of all that my parents went through, because of all that other babies with O.I. have gone through - yes it matters a lot to me.

But now that I am older and have grown out of the confines of those bullet-point symptoms of O.I. type III, I sometimes wonder if the labels only matter a lot to me because those around me have made it matter.
Something tells me that as a day old, or even as a one or two year old infant -- the idea that my upbringing was wrapped tightly around the fingers of a diagnosis was about as important as saying "excuse me" after I was burped. I simply had no clue. O.I. type III was important to my parents, my medical team, my care takers and those who loved me. Why? Because they were the ones who were responsible for my safety and wellbeing. And it probably wasn't until half-way through elementary school that I had some idea of why I should talk to my classmates about my differences. It was important to me because my teachers, classroom aide, and my parents said "this is a good idea for you."

To be totally honest, O.I. type III probably wasn't something I really considered a part of my identity until I began this blog in May of 2011. Up until that point it was just a way to take care of my medical needs. Now? Now I think it's something I'm fiercely over protective of not because I'm afraid of losing it, but because I know there is so much I have yet to learn and I stubbornly want to do it all by myself! (Picture the first time you are baking your family's secret recipe. You've done it so many times with your mom, your dad, or your grandparents -- but this time you demand total control. My family has done enough and all that they possibly can, now it's my turn to finish this off.)

Let's also keep in mind that for me the label O.I. type III and the label "disabled adult" are two very different concepts in my mind, at least for where I am right now! There are distinct values and experiences that define my identity as someone with O.I. type III, and a wholly separate experience that define my identity as someone who is disabled; what's important in this instance is that 90% of both of these identities are shaped by my own experiences, and how I have interpreted them. While there are many areas where these two identities overlap I think there is a lot of personal pride that I'm comfortable enough with myself, finally, to identify strongly with both.

This isn't meant to belittle the value of a medical diagnosis. It also certainly isn't meant to influence anyone in one way or another, this is just me trying to make sense of the jumble that is me inside my own head; and to think that this is only one slice of all there is to me!
But I will say that for the parents and family who are raising the child with O.I., go ahead -- cling to the diagnosis and consider everything that your child's medical team believes is best. Cling to those definitions and labels, do whatever you have to do to come out the other side of tomorrow with your sanity intact... but realize that eventually, if everything goes right, your job will come to an end at some point and the diagnosis won't be up to you to cling to anymore. Instead it'll be your child's decision to cling or mold, or set aside, or even toss it away. I don't know anything about parenting, it's true, but I do know that when that happens you've done something right.

This might come as a surprise to some, especially given the fact that I have a public blog - but I am actually a fairly shy person. It may take a whole semester of school before I start making friends. It'll be more than a month before I'm comfortable in any work setting. I'm not likely to strike up conversation with fellow commuters on the train (no matter how many mornings I see the same faces). I would much prefer a party with 5 of my closest friends than a house party of 20+ strangers and 1 friend.

With that in mind, when people on the street or even acquaintances ask me why I'm in a wheelchair - you can bet that I am shy about my response too. It usually goes something like this:
Person: So can I ask you a question? Why are you in a wheelchair?
Me: Uhhm, well I have this thing.. um basically it makes my bones brittle. I fracture a lot. 
Person: Oh so you can't walk at all?
Me: [Internal Sandy monologue: is this person an adult? Is the person a child? Will I see this person more than five times in my life? Is this person also disabled?] And depending on those answers I will either say:

1. I was born with brittle bones, it's genetic. I can walk but I need to use leg braces and a walker, or crutches
2. I'm able to walk but I need help doing that, and a wheelchair makes that easier for me
3. I have this thing called Osteogenesis Imperfecta, brittle bones. It's genetic. I can walk a bit but the wheelchair just makes my life a lot easier. 

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.

Yes, I know. We don't see it as a 'disability' or a 'handicap' or any other negative connotation. But let's not kid ourselves here - there have been situations in life when I have envied able bodied people. And one situation has always tripped me up: I'm not able to be as physically relentless as my peers. I see that when my brothers get angry they go for a run, or when my friends get frustrated they go punch a bag, the wall, the door... some object that when I play it out in my head, I know would result in a painful fracture. One that would be even more frustrating, aggravating, and upsetting to deal with than whatever original situation had gotten me so upset. That moment is always humbling for me. It puts everything into perspective, that whatever is bothering me - there is always a better/safer way to let out the frustration and hurt.

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