01 June 2013

The Twisted Sister: Living with Scoliosis

This little story is sort of a long time in coming. I've been looking for some sort of way to talk about my experience with scoliosis in a social way for a few years now. So few people actually understand what it means to live with your spine being crooked. Thinking about my history with it is distressing for me, so I've been holding off on it for a long time.
What I really hope for this story is that some little kid who learns she has scoliosis will find this page on the Internet and learn that there are certainly obstacles, but they are surmountable. And I hope that others will be able to learn what this condition is, and will be able to be knowledgable about it, should they ever encounter it.
Without further ado, this is my story about living with scoliosis.

I first found out that I had scoliosis when I was eight years old. During a routine physical exam just before school started, my primary physician did the normal test: palms together, touch your toes. But on that day, he found something unusual. My spine didn't look quite right. He wrote a referral for Dr. Allen Carl, the best orthopedist in the area. He worked in a centre in Albany, NY, nearly an hour's drive from my parents' house. He was the best in the business, according to my physician; he even treated sports players.
My father took the day off of work to bring us, basically a rarity back in those days.
When we arrived for my first appointment, it was apparent how desired Dr. Carl was among orthopedic patients. We waited for three hours to see him, with my mom and I both reading, my father getting impatient, and my younger brother, then five years old, also getting impatient.
When I was finally called in, they took X-rays. A lot of them. From a lot of angles. Hold your breath. Okay don't. Okay hold. Okay breathe. Turn towards the door. Hold. And so on.
Seeing Dr. Carl for the first time was almost surreal. I hadn't really seen a "specialist" before, and to me, that meant he was smarter than my regular doctor. He could fix my scoliosis, whatever that was. See, no one really explained it to me before that day. They didn't tell me there wasn't really a "cure."
The man named Allen Carl was terrifying to look at. He towered over me, his hair was greying, his big glasses sheltered his eyes, which didn't really look at me anyway. He threw up my X-rays, these alien skeletal pictures of me, almost as tall as me. He took a ruler and pencil, made some markings on my bones, and turned to my mother.
"Patient Andrea Veliz, age 8, has presented with a skeletal curve of angle 13 degrees, rotation 10 degrees. S-shaped curve between---"
The rest was medical terminology. I still don't know which of my vertebrae are involved in my curve. It was always some jumble of T's and L's and numbers. What I did understand from my X-rays is what scoliosis is; my spine wasn't straight. It was shaped like a tiny "s" in my back.
He never talked to us, though. He talked to his tape recorder, his personal record keeper to be transcribed by his secretary because he couldn't be bothered to write his own notes. He may have been the best in the business, but his demeanor was colder than his hands.
At the end of the conversation, he asked for any questions. My mom asked some normal mom stuff; treatment recommendations, physical restrictions, et cetera. I stared at my shoes.
"Mrs. Veliz has asked if anything needs to be done now in terms of her daughter's treatment. At this point, nothing needs to be done, " he assured the tape recorder, "as many children develop low-grade scoliosis that never worsens. But we will keep a close eye on her curve since she is still growing, and recommend a visit for X-rays six months from now."
And that was the first visit. He never asked how I was doing. He never shook my hand. He never looked me in the eyes. Dr. Allen Carl was the best in the business.

Some time after, I was talking with friends at school. I told them about the visit, about the scoliosis. Later that week, every student in my class stayed away from me. They told me they didn't want to catch my disease. I tried to explain that it wasn't contagious, that not even my doctors knew where it came from -- no one in my family had it.
It didn't work.

Although Dr. Carl kept a close eye on my curve with regular X-rays, his initial prediction was dead wrong. Somewhere around age twelve or thirteen, in a six-month time frame, my curve skyrocketed from the 13 degrees it had hovered around for the last four to five years to 27 degrees, rotation 16 degrees.
That day, driving up I-90 to get my X-rays, I knew something was wrong. I had known since I woke up. That day, I brought my Pikachu plush toy to Albany with me.
When Dr. Carl put my X-rays up on the light board, I saw it in an instant. I sank to the floor, pushing into the corner.
"Patient Andrea Veliz, X-ray shows..." pencil markings... "27 degree curvature with... 16 degree rotation."
I read all the stupid pamphlets my mom had gotten as soon as I was diagnosed. I knew what he was going to say next:
"At this point, I recommend that we put Andrea in a brace."
That's when I lost it. I was already teased at school for so many things. Now, I was going to have to wear some monstrosity. As soon as everyone found out, I would be called a slew of new names. I cried into Pikachu's head, his long, pointy ears cradling me at the cheeks.
"I also want to recommend that Andrea refrain from carrying anything heavy, including her backpack. This could result in further advancing her curve, which could require corrective surgery."
My mother nodded and just watched me cry.
"At this point, it needs to be decided which brace Andrea will wear. There are three choices: the Milwaukee brace, which is worn for twenty-three hours a day, the Charleston bending brace, which is worn for eight to twelve hours per night, or a newly-developed brace made of fabric, worn twenty-three hours per day."
"This is Andrea's decision," my mom whispered.
Dr. Carl shut off his tape recorder, and they both stared at me, this crumpled up piece of person in the corner. I didn't want to make the decision. But I did, after my mom said, "Come on, Andrea. You have to choose."
"I'll wear the one for sleeping," I told Pikachu. The adults nodded.
Dr. Carl turned his recorder back on. "Andrea has chosen to wear the Charleston bending brace. She can go upstairs to the fourth floor to be fitted right away. We will keep close track of her curve from this point on, with her next visit in four months."
When we left the office, I ran to my dad in the waiting room and jumped into his lap. I half sobbed, half screamed at him, "I'm a freak, dad!" Everyone just looked at me.
My mom explained everything to my dad, and they brought me to the elevator, and up to the fourth floor. When we arrived, my mom handed a slip from Dr. Carl to the secretary, and she and I were brought into a room were I was to be fitted. I was handed a double-layered tube of nude-coloured cloth with armholes cut. The man who handed it to me said, with a smile:
"Here you are, Andrea. To protect your clothes, we're going to have you put this on. Take off everything but your underwear, and crack the door when you're ready."
I stared at the cloth tube for a long time. It was anonymous. They must hand these things to people like me every day, I thought. I followed instructions, folding my clothes gently into a chair. As I slipped the tube over my head, I began to wonder why is was double-layered. I wondered why I needed to protect my clothes. From what?
When the man arrived again, he had rolls of plaster bandages, a bucket of hot water, a large floor pad, a plastic tube, and a pencil. He placed the floor pad down and asked me to stand on it normally. He then made markings along my back, and taped the tube to follow my spine, curve-for-curve.
"Now, stand with hands out against the wall, and we'll start the casting," he said, dropping the bandages into the water.
Once softened, he began wrapping the bandages around me. They were hot, and the water seeped through to my skin. I winced, but tried to remain compliant with my instructions. He talked easily about the casting, that we would go from under my arms to down past my hips. This gave the makers of the brace an exact set of measurements, and they could tailor the brace to my needs.
"Each brace is a custom job," he said proudly.
He also explained that I'll get fitted for more in the future, as my body changed with puberty and growing. Using the brace would essentially "correct" my curve overnight, preventing it from getting worse.
When he had finished wrapping the bandages, he stepped up, washed his hands, and opened the door.
"I'll be back in ten minutes. In that time, it will harden, and we'll get it off of you. Just make sure to stay as still as possible."
And he was gone.
My mom had been pretty quiet during the fitting. I imagined then that she was horrified at the plaster-flesh monster I had become.
"How are you feeling, honey?" she asked at last.
"Horrible." I kept my voice quiet. Any louder, and I thought I would cry again.
Ten minutes passes so slowly sometimes. As I waited, hands flat against the wall like a criminal being searched, the plaster got hard. As it solidified, it released all its heat into my body, and suddenly, I was burning up. What's worse, it hardened so thoroughly that I couldn't fully expand my lungs. I panicked, starting to take short breaths, only half-full of air. I've never been claustrophobic, but actually being encased in something makes it easy to feel like the world is closing in.
"Get me out," I whispered. "It's hot. I can't breathe. It's too hard. It's breaking my lungs. Get me out."
"What are you saying, honey?" My mom walked to me to hear better.
"Get me out! I'm suffocating. Help me, Mom! Help me! I can't breathe!"
She didn't help me out of that thing. She put a hand on my shoulder and told me to calm down. How can you calm down when every part of your body is screaming for air? For glacial waters? I struggled not to scream. I couldn't anyway -- I didn't have enough air to.
Finally, the man came back, carrying a small circular saw.
He's going to kill me, I thought. At the same time, I didn't care if he did. Anything was better than the hell I was in at that moment.
He saw my eyes widen at the saw and laughed, "Don't worry. It's for the cast. It only cuts plaster -- it can't cut skin!"
"I'm not stupid," I said quietly, gasping. "Anything that cuts this rock cuts skin. Just get it off me, please."
And he did. And that's why the tube was double-layered. The layer attached to the plaster went with it, tube-spine along for the ride. Never had air felt so good.
He took measurements. Asking me to hold up my arms, leave them down, bending and twisting and writing everything on a sheet for the manufacturer. He asked me to pick a colour: pale pink, pale blue, or white? When he was done, he smiled again.
"It will be ready in about ten days to two weeks. We'll call you. She'll need to come up for a proper fitting, and we'll make adjustments as necessary. See you soon!"
And he left.
On the way home, I stared out the window. I felt violated. By everything that touched me. Every piece of the world seemed as crooked as me. That was the first day my dad brought us to McDonald's on the way home. It became tradition after that day.

Two weeks later, we got the call and drove up again. When I saw the brace, a veritable torture device (custom!) constructed of plastic and Styrofoam, I wanted to scream. The man who had cast me showed my mom how to put it on me. It pressed against my (very) slowly developing breasts and, since my curve pushed me to the right, the upper cuff -- the part that bent me -- dug up into my right armpit, pushing me to the left.
How am I supposed to sleep in this? I thought.
My mom looked at me sadly. I imagined her thinking to herself that I had become a new monster, the plaster cocoon having burst to give this new beast she had to call her daughter. I was so ashamed, and I wondered if she was embarrassed that this was the result of the little baby girl she had given birth to.
That first night, I slept on the couch in the living room, which is where my parents' bed was in our apartment. It was a Saturday night, so my mom, my brother, and I stayed up watching The Outer Limits and late-night Toonami whilst my dad went to bed my bedroom for his extra-early Sunday shift.
Before the lights went out, my mom put me in the brace, pulling the velcro straps tight, and bid me goodnight. I was trapped.
I stared at the ceiling. My brother was asleep already. I knew my mom was watching me. I couldn't move. I could only lie on my back. The rivets dug into my skin. My top half was smooshed into the pillows of the couch, conveniently on my left side. How was I supposed to sleep in this thing for the next few years, as Dr. Carl predicted?
I cried as quietly as I could so that no one would be disturbed. After a few minutes, my mom, sighed loudly, came over, and took it off.
"How are we going to expect you to wear this for something like three years if you can't even keep it on for ten minutes?" she scolded in a whisper.
She laid back down, and I cried into my pillow until I fell asleep.
Shortly after, my mom got me some novels about girls who had to wear a brace, most notably "Deenie" by Judy Blume. She said she thought it would help me deal with my situation better. They didn't. Because I didn't read them. Because I didn't want to know how imaginary teenagers got strength from family, friends, and most importantly, from within to conquer the adversity of the Scoliosis Brace. Real life doesn't happen like that.

With the start of the new school year coming up, we went shopping for school supplies. That year, we were due for new backpacks. My brother got a boring one, straight from the boy's section of Walmart. I got a rolling suitcase.
"Dr. Carl said no carrying heavy backpacks," my mom reminded when I complained. "So you're going to have to use this. That way, you won't hurt yourself."
I stared at the "backpack" as we walked through the store, and thought of ways to get out of using it. Maybe I could pack my old bag for a few days, under the guise that I forgot about the change. But I knew my mom wouldn't let me "forget." She helped me to pack the bag, all ready for the first day. But the Wrath of the Suitcase was only just beginning.
Two days before seventh grade started, my mom informed me that she had called the school and explained my situation. In order to allow me to store my backpack and my books in a locker, they gave me two; one just for the bag.
On the first day of school, just as I was boarding the bus, the driver, an angry red-haired woman who didn't like children much, stopped me at the steps.
"You can't bring that onto the bus!" she shouted. She got everyone's attention.
"Doctor's note," I whispered, producing a note, giving me permission to carry the suitcase to anyone who objected to it. My mom had gotten several copies.
The driver read it, examined me and the suitcase, and scoffed. "You are still required to sit in your assigned seat, and to share the seat with the other person assigned there. You don't get special privileges for pretending to be crippled!"
Giggles and teases walked back to my seat with me.
After arriving to first period, as the teachers brought us to our lockers to "try them out" (because they have to teach students how to use them, apparently), everyone in the hallway giggled at the suitcase, and even more when I tried desperately to stuff the thing into the bottom locker. It didn't fit. I tried every angle, to no avail. My first period teacher, math instructor April Bergmann, leaned over and said I could put it in her classroom closet from then on. That meant elevator use, reserved for janitors, teachers, and students with doctor's notes to accompany their crutches and wheelchairs. I got in trouble at least once a month for using the elevator that year, requiring a flash of the Doctor's Note.
After a while, people stopped teasing me for the backpack, but it still showed me its wrath occasionally. Sometimes, April Bergmann had an appointment or something that required her to leave school before the last bell rang. Since she locked her classroom door upon leaving, that meant finding a janitor who would let me in. It also meant that I missed the bus on those days. At the time, I was not "allowed" to stay after school, so when I called home to tell my mom I had missed the bus and would be home late, I was scolded.

Whilst the suitcase became only an occasional nuisance, the Charleston bending brace became my constant enemy. I could only sleep on my back; attempting to lay on my stomach resulted in near suffocation, the sides in piercing pains that lasted through the next day. I often slept at an angle so that I felt some sense of normality, but it constantly made it difficult to fall asleep. Eventually, my mom and I reached an agreement. If I could not fall asleep for an hour, I was permitted to take it off, signalled by a knock on the wall. I often stayed awake on purpose just to get the stupid thing off.
Since I was supposed to wear it as often as possible, my parents tried to discourage me spending the night at friends' houses (and that they were a bit on the paranoid side when I was that age), and insisted on my friends staying with us. They always asked about the brace, and I had dreaded explaining why I had to wear it. They also stared at me for a long time after the lights went out. I hated having friends over, and I pulled away from them.

One day, my mom came in with Sharpie markers and put the brace on my bed.
"I thought you might feel better about wearing it if you could make it your own," she said.
She encouraged me to write and draw on it, and she wrote phrases she heard me say often with friends. Soon, the front and velcro straps were covered in black Sharpie, with words like "Cool!" and "Dude."
I never told her how much I hated writing on it. How I never wanted to make it my own, because mentally, it merged with my body a little more with each pen stroke. I let her lead me into doing it with each new brace I got.

In total, I was cast for and wore four braces. With each visit to Dr. Carl, we brought the brace, and took X-rays with it on and off. Was the curve progressing? Was the brace working, keeping me "straight" throughout the night?
Everything about wearing the brace became a stupid routine that I grew to hate. When I was fourteen, and wearing the brace for something like a year and a half, that changed.

We went up for X-rays and a visit, like always. I sat in the radiology waiting room with my mom, the brace in a separate chair next to me, when a woman walked up to us, with her daughter on her arm like a handbag. She struck up a conversation with my mother.
During the conversation, the girl didn't say anything. I didn't either. I just stared at her. She was thin, with long blonde hair, and the faintest hint of freckles. She had this sad, distant smile on her lips. Like she wanted to cry, but her mom wouldn't let her. I caught bits of the conversation and pieced together a story for the girl:
Her name was Xena, and she was twelve. She had been in the brace, too, but she didn't wear it like she was supposed to, so she had to get The Surgery. She had gone through the process of reserving five pints of her own blood for it. She was getting one more X-ray before the procedure in just another few weeks.
Suddenly, I knew what she wanted to cry about. Back then, getting The Surgery meant that she would be unable to run, or ride bicycles, or swim, or roller blade or anything. She could only walk, sit, and watch the world pass her by. I stared at her, wide-eyed. She should be crying, I thought. Like me, but more than me, her life was devastated by her deformity. But she just smiled.
Just before her mother carried her off, she whispered two sentences to me.
"Just wear it. It's better that way."
I never saw her again.

Meeting Xena for those five or so minutes changed everything. She was two years younger than me, had already dealt with and was dealing with so much more than me. I took her only spoken words to heart, and made her a promise that I would wear the brace to the end.

The end was when I hit what is known as Risser 5, measured by a bone cap that grows on top of the hip bones, indicating that I had quite nearly reached the end of bone growth, and that my curve was unlikely to progress any further. It was then, at around age sixteen, that I was allowed to stop wearing the brace. By then, I had long rejected the suitcase, using a messenger bag and keeping my textbooks at home. We had also stopped seeing Dr. Carl. My dad complained about how long we had to wait to see him, and we saw his protege, Dr. Zmuerko. As cliché as it sounds, I literally jumped for joy. I was ecstatic. The nightly torture was finally over. My mom promised me a seven layer chocolate cake as a reward. I never got the cake.
About a year later, at age seventeen, having switched to a Mr. Dr. Michael, my X-rays showed no progression, and I was told I would no longer have to see an orthopedist unless I began to experience issues. I considered that day to be a day of freedom, but most of all, that was the day where the promise I made to Xena was completely realized; I had finished my saga with the brace and made it out without getting The Surgery.

Since then, my experience with scoliosis has been of what are known as "longterm effects."
I am still not able (or more accurately, "allowed") to lift heavy things. I am lucky enough to know people who are willing to help me with those tasks.
The most bothersome effect is the pain. Because my curve sits at the lower end of my back, I am extremely prone to lower back pain. As a result, I cannot sit, lay, or stand in one position for any prolonged period of time. I have to constantly shift around to find relief, which often leads people to think I'm nervous when in conversation (this is usually true, but my anxiety doesn't present as that type of fidgeting).
I used to get massages when I was still in college, curtesy of my parents, and they helped, but only for a few days. Average pain relievers don't touch it. As a result, I unfortunately feel older than I am, and I've been in pain every day for something like five years. I sort of just learned to live with it.
The most recent effect has been a difficulty in breathing. As a result of my rotation, my rib cage is twisted, causing the left side to stick out nearly an inch farther than the right. When I discovered this around the age of eighteen, I became extremely embarrassed by it, and refused to wear form-fitting shirts, for fear that someone would notice what became glaringly obvious to me. In the last year, it has caused some issues in breathing, compounding with my long-existant asthma. It was only recently that I read a study that found that spinal (and therefore rib cage) rotation can cause this problem (specifically written as "decreased lung capacity"), confirming what I had feared is happening. It can also cause heart issues that I hope will never happen.

Scoliosis is something I have to live with every single day, and it's always reminding me that it's there. I've thought about asking a physician for advice on management or pain medication, but my last doctor insisted scoliosis is harmless and it was my weight causing my back problems. I've not gone back to see him.
Further, I have to deal with the people aspect of it. Whether it's the people I have to let lift the heavy stuff for me, or the clinic doctor who freaked out and had me do an "emergency bending test," when she saw that my shoulders were not level when I was just in for a case of tonsillitis (I had to explain that I knew, and I had taken care of it), my scoliosis has a way of becoming known to people, whether I want it to or not.
Still, I consider myself lucky. Lucky that I met Xena, that I had the opportunity and ability to make that promise, that I ever had to get The Surgery. Although I have some limitations, I am still able to do the things she no longer can. I don't know if she remembers me. I don't know if her doctors found a better solution for her. But I am thankful to have met her.