I can’t even remember now how I met the fabulous Laura Kelly. You’ve seen her in ScareHouse videos, or you may have met her when she worked for Visit Pittsburgh or through her involvement with Team Tassy.
She’s an awesome Burgher and unknown to most, she was born with spina bifida, like some of the patients in the Ortho unit we’re outfitting this year via Make Room for Kids.
I asked Laura to tell her story so that you can understand what these kids go through when they undergo spinal fusions as treatment for scoliosis or spina bifida.
“Hi. I’m Laura, and I’m a perfectionist.”
If there was a Perfectionist Anonymous, I’d be first in line for every meeting. Since I was young, I worked hard to be good at whatever I did. Many late nights were spent at my parents’ dining room table, writing the perfect script for a video history project or memorizing a calculus equation. No matter what, I wanted to know that I earned whatever grade I got, that luck or circumstance had nothing to do with it.
It’s always been hard for me, a girl who has always wanted to control her destiny, to accept that what has made the most profound and important impact on my life had nothing to do with how much I studied or how hard I worked.
I was born with spina bifida. It was the 80s in central Pennsylvania, so spina bifida wasn’t the first thought that came to anyone’s mind. Ultrasounds weren’t as sophisticated as they are today, so my parents had no indication before I was born that anything could possibly be wrong.
Luckily for me, though, I have the kind of parents who go into Mama and Papa Bear mode fast. When doctors at home told them the large lump on my back was just from being squished for nine long months (plus 12 days because I’ve been a pain in my mother’s neck from the get go), my parents asked for a second opinion. They were sent to Pittsburgh, where the diagnosis was made and the treatment plan was determined.
I had surgery at a few months old, a procedure that hadn’t even existed a few years before. I often wonder if my older brother and I had switched places and I was 30 instead of 26, what my life would look like. Would I be independent? Would I be walking? Would anything about my life resemble what it actually is?
After the successful surgery, I spent a few days each year traveling to Pittsburgh with my parents to a spina bifida clinic. As a kid, I didn’t understand the furrowed brow of my dad or the pursed lips of my mom every time my name was called to go in for a new test or scan or blood draw. For me, the days in Pittsburgh were my absolute favorite days—no school, no homework, and best of all, no siblings (middle child syndrome much?). I didn’t understand that the kids in the waiting room in wheelchairs were there for the same reasons as me, that their parents were told the same thing as mine when they were born, but, for some reason, I was the one who got lucky.
Fast forward a few years, and I was a regular old seventh grader. I was busy being a perfectionist when I hurt myself playing volleyball. When my legs went numb a few hours after I fell, that furrowed brow and those pursed lips appeared again, and I went to the emergency room, where tests were done and scans taken and blood drawn. When the doctor referred me to an orthopedic surgeon, my own brow and lips tightened. I pulled a muscle; I didn’t break a bone. Why was I going to an orthopedic surgeon?
I soon found out that a side effect of the spina bifida was that the bones in my spine never formed completely. When I went through my big growth spurt, I didn’t have the foundation to support my new height, and my vertebrae bent under the new weight. I was diagnosed with kyphosis, a curvature of the spine similar to scoliosis.
I spent the next year in a back brace (which, btw, if you’re playing basketball against a girl who likes to throw elbows, back braces are the best things ever. A shot in the gut doesn’t do a thing to you, but man, does it give the elbower a dose of her own medicine. Fourteen years later and it still brings me so much joy.).
My curvature just worsened, though, and the doctor explained that if it continued to increase, I’d be risking a lot. He said that my spinal cord was being stretched and stretched, and just like a rubber band, it could only stretch so much before it snapped, paralyzing me. My lungs were also at risk, as they were being compressed. As the curvature worsened, I ran the risk or suffocating myself.
So, it was surgery time.
Imagine for a second that someone took a flagpole, covered it in spikes, used a blow torch to rip open your back, slammed the spike-covered pole into your back, then used rusty fishing hooks to sew you back together. That’s what spinal fusion feels like. Then, when you’re waking up on what feels like a mattress made of potatoes and bowling pins with two rods, a crap ton of screws and hooks in your back and an added three inches to your height, add in the under-five crowd, yelling and laughing and being all around annoying because they didn’t just have surgery and still enjoy their lives. That’s what recovery as a 14-year-old is like.
The suckitude is beyond anything I had ever experienced, and haven’t experienced anything like it since. I couldn’t do anything for myself for a while. I mean, anything. Showers? Not alone time anymore. Putting on pants? At least a two person job. And this lasted months.
Bending over was off limits for six months, and those six months happened to be my first six months of high school. On the first day, I dropped my calculator and saw no one from middle school anywhere around me. So, I kicked my calculator down the hall to my brother’s English class, knocked on the door, asked to see my brother, and had him pick up the calculator for me.
I went to a Catholic school, so uniforms were a part of my daily life. Let’s talk real quick about the awkwardness that is your mother shaving your legs for you because you’re not allowed to bend over and you have to wear skirts to school. Take a minute to let that sink in. I’ll wait.
Then, of course, there were school dances. The first few were off limits, but I was finally allowed to go to Homecoming, under strict instructions from my parents not to get too close to anyone (Just an fyi for all you parents out there—not being allowed to be touched is a great way to keep your teenage daughter from dating.). My brother was also under strict instructions, and he circled my group of friends every 15 minutes or so, with what we in the biz call “The Kelly Look” on his face (the ‘biz’ in this context is getting in trouble by anyone in my dad’s family).
I was also pegged right away as a goodie goodie, not because of anything I did, but because of what I didn’t, or rather couldn’t, do, namely, slouching in class. It was a hell of a year post-opt, and the only redeeming factor was that it was now behind me and I would only get stronger and feel better as time went by.
Which brings us to this past summer. Long story short, shit hit the fan. Something went nuts in my back, and I spent two days in bed, unable to stand up, literally crawling to the bathroom and kitchen for anything I needed. When this happens at 25, regardless of past medical problems, you worry a bit.
So, I made appointments and once again had tests done, scans performed and blood drawn. This time, though, I knew what could happen next. I knew that if the doctor said scar tissue from past surgeries had tethered to my spinal cord, I could be in real trouble. I knew that I could be down for the count for six months again, but instead of having my big brother to pick things up for me, I would have a job and a house and a mortgage to deal with.
When the results came back, I learned that yes, more spinal fusion was in my future. The vertebrae above and below the fusion from when I was a kid had been handling the stress of the past 12 years– the cross country races and half-marathon trainings, the heavy lifting for event set ups and the falls on ice, the crew races and fender benders. And, after 12 years of it, those vertebrae had had enough.
Since my very first surgery was a success because I was born late enough, we all decided to wait as long as I can stand it until I have surgery again, in the hopes that science will make this one my last.
When we decided that, though, I wasn’t happy. Having surgery now would suck, but having surgery in five years? I could have a family in five years. How does someone not pick up their child for a year because of post-opt restrictions? How does someone explain to a toddler that, no, Mommy can’t play with you because Mommy can’t sit on the floor because she can’t bend over to get back up?
I was already missing the children I don’t have.
I was feeling down—really, really down. There was a pity party more pitiful than any pity party this side of the Allegheny has ever seen, and I was the guest of honor.
Then, I heard about Kiara. Kiara and I had met a few months before at an event at which I was speaking. I was talking about my story, and Kiara was the current poster child, having been born with spina bifida, too, but that’s where our similarities end. Kiara’s spent a large portion of her life in and out of hospitals, having surgery after surgery, all to get her to a point where mobility can be obtained.
Kiara is just 11, and this past November, her parents were killed in a car accident. Kiara was in the car, too, and was life-flighted to Children’s Hospital, where she’s had more surgeries, adding to her ever-growing tally.
Learning about Kiara was like a punch in the gut. What was I doing? I could walk. I could breathe. I could climb the stairs and live alone. And instead of walking and breathing and living, I was feeling sorry for myself because things weren’t going exactly as I had planned.
Things weren’t going exactly the way as I had worked for them to go.
They were going a way that I had nothing to do with, just as they had when I was born or when I hurt myself playing volleyball. And, just as they had back then, they were going in a way that made me so much luckier than most.
I gave myself a pep talk, told myself to buck up, cowgirl, and decided to do something about it. That something is coming up on February 22, and I hope you’re able to attend.
And, I hope you’ll skip a cup of coffee or two this week and give to this round of Make Room For Kids (click the “Donate” button under the thermometer). The kids who will benefit from these efforts had nothing to do with what’s happening to them. They didn’t skip out on studying for a test or lie to their parents. They weren’t mean to their little sisters or tattled on their big brothers. They’re just kids who didn’t get that lucky this time. Children’s Hospital is giving them the care to make sure they’re luckier from here on out, and Make Room For Kids is giving them something to make the suck suck a little bit less.
And then maybe they’ll be lucky like me.