Faulty (Confessions of a Spina Bifida Patient)
If anyone ever asks me what growing up was like for me I always tell them that I had the best and worst childhood. For the most part life at home was full of happiness, wonderment, fun and every day adventures. Looking back I cannot recall a single day where my mother, Jason, Spencer and I weren't out somewhere having a total blast -- feeding geese and ducks on the small beach next to the Willamette River, riding the kiddie rides and wandering the grounds at the amusement park across the bridge in Portland, downtown Oregon City where she always let us go into the 99 cent store and pick out a toy (usually My Little Pony for me, while my brothers always got yo-yos or matchbox cars) then we'd go up the Oregon City elevator and walk down the steps, circling around to the McLaughlin house where I would always request a penny to make a wish on and toss into the fountain. And if I wasn't out with Mom, then I was gone with my grandma and Spencer. I was rarely home and even when I was I never stayed in the house for very long. Our place was always full of kids because my mother held a daycare from our house during the week, at one point she had thirteen kids plus her own three, and so I never ran out of friends to play with.

The neighborhood was mostly boys at that time so I was constantly running after them, playing down in the creek in our backyard or playing with toy guns. I definitely fit in with the guys although I'm not entirely sure I'd fancy myself a real tomboy as I still loved all the little girly things. There were only two girls around my age that my mom looked after, Alix who was two years my junior and her little sister Devon that was two years younger than her, and we spent hours in my room playing dress-up or Barbies. My room had two rather large closets that my mom and I split, and we'd empty her side and put on her clothes and prettify ourselves. I discovered the wonder of make-up then which has since become a full-out addiction. That portion of my life, at least, had absolutely nothing to do with the fact that I was sick. It's hard to explain because I was always very much aware of it, but when I was at home living my "normal" life it seemed to be a very minuscule, unimportant fact. A few rare times my illness would trickle over and interfere with my life, such as the fact that I've always had to catheterize myself and take antibiotics for the many urinary infections I would get, but they were more just little minor annoyances rather than anything big.

I think a big difference was that I was too young to understand that my life was somehow different from everybody else's. In my five-year-old brain I thought everyone visited the hospital frequently and had countless doctors. From an outsider's perspective one may wonder how a little kid could cope with such an illness, but when you're on the other side of it there's nothing that feels really unique about being sick. It's just something in life that happens and you get used to it, simply deal with it and move on. No one in my family ever treated me like I was sick and none of my friends knew, so it was easy to push it aside even when I was dealing with it privately. It was like living a double-life, always treading softly the line between just trying to be a kid and being sick, desperately hoping they never intertwined. There was Plain Old Kayla and Kayla With Spina Bifida.

The other side of my childhood is a little more difficult while just as potent in my memory. For every summer day that I remember playing with my friends and discovering the world by my mother's side, I can just as easily describe to you innumerable hours spent in a doctor's office waiting to see another new specialist who supposedly had all the answers, or lying in a hospital with machines bleeping around me surrounded by people who poked and prodded and thumped. Doctors sat in front of me and discussed me as if I wasn't there, like I couldn't hear them marveling at how profoundly mixed up everything in me was, holding up charts and graphs that I couldn't read to help me comprehend.

The sights, sounds, and smells of the medical world became very comfortable and familiar with me -- the hospital was like a second home, and the people who cared for me during my visits became an extended family. Even still today as I walk down the halls of Emanuel Hospital I am stopped by nurses, doctors, even the resident pastor as well as some janitors (seriously, janitors! My mom and I joke that's how you know you've been in a hospital way too much; when people who scrub the floor know and recognize you). Most of them have known me since I was just a toddler or younger, and I'm so grateful to have met so many wonderful people that are kind enough to remember me and be concerned. They remind me that goodness and genuine love do exist in this world.

But even I have to admit, it was a lot for a little kid to process, there was a great deal of fear, loneliness, and confusion in those first couple years. Being in the hospital after surgery was tough, being away from my loved ones not to mention the slow and often times painful recuperation afterwards. Days in the hospital can be long and monotonous, even when you're family and friends come to visit it all kind of blends into this blur of tests and updates and waiting. It was only within the cold walls of those medical buildings as doctors came and dissected me like a frog in their eighth grade science class and studied the symptoms of my waning health that I discovered something wasn't right about me. It was only then I fully grasped the concept of being sick, no matter how much I tried denying it when I went back to my "normal" life.

It was in school, around first grade, that my illness became the most glaringly obvious. You know, kids like to ask lots of questions. Now I see that it wasn't cruelty but sheer curiosity that made them wonder how come I had to have my mother come to get me several times during the day for my periodic catheterizing regimen, or why I'd miss a half-day of school only to come back during lunch with cotton balls taped on my arms covering the marks from needles. They would ask what happened to me when I'd leave for weeks and sometimes months at a stretch, then return sometimes in a cast or having bandages across my stomach with tubes still coming out of my sides. They didn't get why I couldn't do everything they could, like some exercises in gym class, because my stamina and strength just wasn't up to par with theirs. It must have scared and confused them, I understand that now, but I cannot even begin to express how uncomfortable and often downright humiliating it was for me at seven years old to have to explain the ins-and-outs of Spina Bifida to other little kids who just didn't get it.

Up 'til then I'd lived in a world of doctors and hospitals and learned many things, I spoke the "doctor lingo" fluently and understood the various processes. With my family discussing it was okay, but for a while it really bothered me when I'd begin to explain something about my health, maybe not-so-pleasant and icky, and my friends would either scrunch up their nose and go "eewww!" or give me a weird look and say nothing at all. I didn't get why they seemed to be so entirely disgusted by it. Finally I saw the separation between me and the other healthy kids, how our lives were just on totally opposite ends of the spectrum. For the first time I figured out that I was in fact different and, of course, no kid wants to be different from anyone else. Adjusting to being around healthier kids was possibly one of the hardest times in my life, learning who I could trust and how much I could share, and what I should keep to myself. As cliche as this is going to sound, it was really a blessing in disguise because I discovered at a very young age how to spot a true friend and who really wasn't going to be there for me -- that doesn't mean it was easy or that it didn't break my heart a little when I lost someone who simply wasn't comfortable with being the friend of a girl who had medical problems, but I had to accept it anyway.

It all taught me a lot about people as well as myself and ultimately shaped who I am today. Back then I was horrified at the idea of somebody finding out I was sick, however today while I still don't go around broadcasting the fact that I was born with Spina Bifida if you're someone I know well enough to be sure I can trust you I'm a lot more open. After years of being ashamed of my "secret" life, it feels so great to be comfortable with it in the company of others and to know I don't have to hide who I am. Of everything I learned in school, that is the lesson I will remember the most. I think it has a lot to do with age and maturity-- kids are not going to be as open-minded as slightly older people will generally be, though I know plenty of people to whom that rule does not apply. Some people are eternally ten, but I digress.

As for the actual treatment of Spina Bifida, that's possibly the most complicated thing to explain. You see, Spina Bifida is still not a well-known, widely-understood birth defect, and it was even less so when I was younger. The cause of it is still unknown (or merely not agreed on, some doctors will tell you it has to do with how much folic acid the mother ingests while she is pregnant; others will tell you it's a random occurance with no deciding factors to be sure a baby will or will not have it) and there is no cure, besides it's very unpredictable because every case is different. So there really is no one distinct course of action for treatment and much of what they do is experimental. Let me tell you, if I had a dollar for every time I've heard a doctor say, "now there's no guarantee, but we just discovered this new pill/treatment/surgery and we're going to try it..." I'd be a millionaire. Also the effects of the illness are varied, from neurological to intestinal, and range in severity. Some children with Spina Bifida have more physical symptoms like being wheelchair bound or reliant on crutches, while others like me have no outward signs but all the internal damage.

Because every case is entirely different from another and the symptoms are completely independent of the others you really have to treat each problem like its own individual thing. Currently I have eight doctors, neurologists and neurosurgeons, gastroenterologist and urologists, orthopedists and specialists for the more specific problems that arise. Every one tells me something different, they all have their own approaches to dealing with it and opinions on what should be done. Often times they're wrong and I still run into problems that leave all of them absolutely, utterly stumped. I swear, I learn something new about Spina Bifida with each new physician I see and that's because there's still a lot for them to discover about it.

Of course you can imagine how frustrating it gets to never get a clearly distinct answer on what to do, you wish they'd all get together and have a big pow-wow and come to agreement on something but it doesn't happen. Sometimes they're spot-on, other times I wonder how I survive the crazy stuff they do to me. But ultimately, my best doctor is ME; I've had this body for nearly 20 years and I know it better than anyone, so even when people are using me as a guinea pig and make uneducated guesses, I just have to listen to it and what it's telling me then let THEM know what they need to do. You'd be surprised how many times I've been right.

Growing up with Spina Bifida has been difficult and trying in many ways, but as I said it's such a large part of who I am today. I have always believed in the balance of life -- every positive has a negative, every negative a positive -- and while there has been some very hard things to deal with, I've also gained a lot of fantastic things from it. Part of me feels that I was forced to grow up faster than I should have, but now I'm glad that I learned so many valuable lessons at such a young age. I don't think of myself as surpassing anyone in wisdom or maturity, but I know I was better equipped to deal with other things that have come along and have a strength that I may have gained only much later in life, or not at all.

Many people have asked me what I think my life would be like if I wasn't born with Spina Bifida, and I physically shudder at the thought because I think without it I wouldn't even be me, and that means I'd give up everything and everyone I hold dear in my life away. And that's a trade I am not willing to make under any circumstances. 

kayla97068   kayla97068 wrote
on 4/18/2008 6:41:29 PM
Thank you. :)

jordii   jordii wrote
on 4/18/2008 6:26:56 PM
wow! I love it!

Special Interest
Health, mind and body
writing kayla97068
There is a balance of life; for every positive there will be a negative, and with every negative soon will come a positive. If you hold on long enough through all the bad, you'll be able to find something wonderful and cherish it all that much more.
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This was part of a meme over at Livejournal where the people on your friends list requested that you blog about something you've never discussed before, and my friend asked me to write about my experiences growing up with a birth defect called Spina Bifida.
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