I rarely write about this topic because it’s been a part of my life for so long that I don’t even think about it every day anymore. It’s been a part of my life since I was 6 or 7 years old. Yet, it affects even the way I move, every time I move.
I have severe scoliosis. It’s so severe that, though I didn’t know it when I was little, it could have killed me. My spine and ribs could have crushed my heart. My parents’ decision to treat it surgically saved my life. (Thank you, Mother and Daddy!)
It started out with back braces. I still have the first one that I got, in first grade. It’s hard to think about the fact that my Porter will be in first grade…hard to think about trying to get one that little to wear one of these 23 hours a day:
The bear in the picture is Cinnamon Bo. I’ll talk more about him later.
The way the back braces worked, there was the outer plastic case you see above, but it was lined with a more breathable rubbery- stuff. On the back panel toward the top, there was extra cushioning that they progressively added to more and more, to try to reverse the curve. The plastic case was just pliable enough to have an adult help me wedge myself into it, then I had to have help to tighten it as tight as I could handle it. I still remember well that I couldn’t stand it if it wasn’t buckled just right.
Back braces…they were tortuous and humiliating. Though, the kids in first grade were cool about it…I could let the guys punch me in the stomach and just laugh when they got their hands from the hard plastic. But as I got older, it wasn’t just a novelty anymore. I think I suffered socially at school because of it…I was generally an odd one out and had few friends in the younger grades.
As I got older, there were more braces, more trips to the doctor and yet even more trips to the “brace shop.” The brace shop probably hadn’t been updated since the 1950s, but the people there were absolutely awesome. The fittings were scary, though. To make a custom brace that was molded to me perfectly, you might imagine how they made it….first came a mold made of plaster. It seems like I wore an undershirt under everything and even with that, they wrapped something around me first. Then there was a strip that went from top to bottom along my spine, to add cushion for them to be able to saw the thing off me once it hardened. And then, came the plaster….hot, wet, nasty stuff. Did I say it was hot? It got progressively worse till I could hardly breathe and then we had to wait for it to dry. By the time I was in sixth or seventh grade I was used to it, but when I was smaller , the scariest part was when they brought out the saw to get me out of the mold. At last count, before I trashed all but that first little bitty brace small enough to fit a stuffed animal, there were 7 braces, I think.
But the braces only did so much and I was uncooperative with them as I got older, which only made things worse. What does an 11 or 12 year old understand about that kind of thing? So by March of 1993, my spine looked like this:
Yep, the curve in that x-ray is 79 degrees. Keep in mind, too, that with my brand of scoliosis you have to think about things in 3D; because the curve wasn’t just bending in one direction, it was twisting my spine, too. I remember the day that they told me I had to have surgery to correct the curve; it was March 8, 1993. I went home and sobbed…not because I had to have surgery, not because I was particularly scared, but because scheduling surgery for the summer of 1993 meant that I couldn’t go on a scheduled school trip to Europe that summer. I was heartbroken.
The trips to the Red Cross started soon after that because I was allowed to give blood to be banked for myself before the surgery. I don’t know how many pints I gave, and my family gave for me, but I know everyone who could did give and I think we used all but one of the pints during surgery. I was a bad stick even then; I remember them having to poke me multiple times to get the draw going.
Most everyone was very, very supportive of me and my family for the surgery. At the time, I was blissfully ignorant of exactly what rested in the hands of my amazing doctor, and unaware of everything that could have gone wrong. I think everyone in my family showed up the morning of the surgery, that morning of June 14, 1993. It was a 10 hours surgery that went through lunch, and I remember my biggest concern was, “How will Dr. F. eat lunch?” I got my answer after the fact…he had a sandwich at some point, close to the operating room.
The surgery was actually two different surgeries in one day. First, they sliced me open from behind my armpit on my back and down, and around to just below the side of my belly button. They removed a rib and part of my hip bone to be used in the fusion of my spine. Then, they turned me over and sliced me open from between my shoulder blades down, pretty much all the way down. My doctor said he stopped counting discs as he removed them once he got to 7 or 8, because he was having to remove so many. Then, along with the rib and hip bone, there was so me bone from the bone bank used to create one solidly fused spine.
It was a big deal, a big surgery. It saved my life. And bonus…I grew an inch and a half in 10 hours!
Incidentally, the worst pain I’ve ever felt wasn’t childbirth, and that’s even counting the fact that I had drug-free births with both boys. The worst pain I’ve ever felt wasn’t even recovery from the surgery itself. It was when the doctor ripped the chest tube out after the surgery. That pain is burned in my mind. I think it’s why my pain tolerance is so high. That hurt, mainly because it had been in so long that the skin had started to grow around it.
People from around Carrollton just poured out to come visit. Particularly from my little Carrollton Presbyterian…I can’t count how many people visited me that summer. Cinnamon Bo, in the picture with the brace above, was a gift from one of those visitors.
The correction wasn’t as great as they might have hoped, but as I said, it did save my life, which is what counts, obviously. Here’s my spine, with Harrington Rods in place, about a month post-surgery:
The rods were held together and to my spine with little twist-tie looking things. Luckily, the only complication to the surgery is that, several months later, one of those twist-tie thingies busted, leaving the tall rod above sticking out of back. It was kind of cool; I could show off the knot for a little while where it was poking me. But it became more and more painful as time went on, so in December of 1994 there was a follow-up surgery to trim the rod, which had formed a callous under my skin by that point. So, besides the bear and the brace and the freaky x-rays and scars front and back, now I’ve got a really super-cool souvenir from this time in my life:
Yep, that’s the inch and a half they trimmed off the top of one of the rods in my back, the rods that will be inside me for the rest of my life. Note how bumpy it is, so that the tissue will grow around it, less likely for rejection.
Incidentally, I do set off metal detectors sometimes, but not always. When I traveled internationally as a teenager, I carried a doctor’s note with me so that there wouldn’t be questions. But, I have shown my scars to prove it, on occasion.
So now I bend from my hips instead of from my waist. My flexibility is not great. And, for those of you who see me in person, you’ll notice that I’m not always good about holding up my left shoulder…that’s because of the scoliosis. I have to consciously think about holding it up for my shoulders to be even.
Scoliosis is inherited. I’m going to start having the boys checked at their yearly checkups, just to be safe. Luckily, I have boys and it’s more likely that it could have been inherited had we had girls. And thankfully, even should they develop it, the treatments for scoliosis are nothing like what I went through. In fact, at my last check up, my doctor told me they don’t do surgeries like mine at all anymore.
The doctor that performed the surgery is one of my heroes. And to this day I’m glad he didn’t go hungry that day in June, just because of me.