Roses for Richard

Around this same time I learned about Lady Jane Grey and really connected with her as well. They both had a big impact on my life and I wouldn’t be who I am today without them. With Lady Jane Grey, I learned the importance of standing up for my beliefs. This in turn gave me whatever extra boost I needed to take a stand for Richard.

I was always a little different from my peers it had never occurred to me that this could be a bad thing until I reached the age when I was diagnosed with scoliosis. Before this, differences weren’t really good or bad, they just were. With the brace, they were bad. Social pressures made it desirable to go along with the crowd and not attract attention. At an age very near to my own, Lady Jane Grey chose to be executed rather than change her beliefs (or at least appear to do so). If she was willing to die for her truth, what was I willing to do for mine? At the end of my life, what would I have accomplished by suppressing my uniqueness? No, this was my life and I was going to make it count. I learned to stay true to myself and value myself as much as possible. Some things I had hidden, downplayed, or otherwise felt self conscious about, I learned to embrace.

Lady Jane helped me fight for her great-uncle. I grew less and less afraid to be the “weird” one. It didn’t matter if nobody knew what I was talking about, I was still going to fight for him and tell other people about him. I looked for opportunities and tried to make up as much as possible for being born a few hundred years too late to stand literally by his side. In high school, I worked out ways I could use him in part of my schoolwork. He kept showing up in public speaking assignments, much to the confusion of my classmates who had no idea what I was talking about. I knew they were paying attention, though, based on the giggles when it came time to bring up Richard’s brother George drowning in a barrel of wine.

In my Freshman Composition class (aka “How to Write College Level Essays”) in college, my professor had to talk me out about choosing him as the topic of my persuasive essay. Twice. The first time she told me it wasn’t relevant to today, but I brought up the Richard III Society’s website and pointed to several news items as well as pointing out people still read Shakespeare’s play. At the next consultation, she said I was missing the point of the assignment of learning how to write a basic essay defending a point of view. The way I was going, she would have to grade me on literary analysis and I needed more experience if I was going to get a passing grade. She saw my hesitation and before I knew it, she had assigned me a different topic I didn’t remember choosing.

Once the Internet did start catching on, I was still in a minority and so many people didn’t even know who Richard III was, let alone the controversy around him. I can still remember realizing the power I had with being able to write things online. I could say anything I wanted and people would read it. One of my first declarations was that Richard was innocent and that those who blackened his good name were guilty of slander and their own honor was called into question. Yes, Tudor, More, Shakespeare, et. al., I was throwing down the gauntlet!

Prior to the rediscovery of his body in 2012, I think Richard was starting to gain a little more popularity. It is difficult to say since I was too close to have a proper perspective. A few friends showed me articles about the dig, but I didn’t want to think about it too much. What if it wasn’t him? No, I wasn’t going to get my hopes up. I was also worried about spamming my newsfeed on Facebook so that if it really was him, people would be tired of hearing me talk about him by the time the results were announced.

I will never forget February 4, 2013. When I heard that was the date the results of the dig would be announced, some of my resolve in keeping calm until it was official slipped. As the date grew closer, I started telling people to watch the news that day, there was going to be something big happening. I was in Connecticut for my cousin’s wedding and on February 4, I was recovering from it in my hotel room. I had never been to New England before and I could just feel the history around me, but I couldn’t do anything about it. Scoliosis is not my only medical condition and it is actually one of the more minor ones. To make a long story short, I have a collection of auto immune conditions (they travel in packs) that has been getting progressively worse, and at this time I was having to be very careful and aware with how I spent my energy. I knew I would need some time to recover after the wedding, so I planned on resting and feeling sorry for myself while the rest of my family went exploring.

I kept getting texts telling me what I was missing and I finally put down my book and opened my laptop to see for myself. As it was starting up, I remembered there was something I was supposed to check. What was it? Then I saw “Richard III” on my homepage. The next few hours were a blur and instead of running around historical places, I was running around online reading everything I could and rejoicing with others! This was it. This was what I had been waiting for. Maybe now enough people would look at this and Richard’s name would finally be cleared. Now we had a chance to honor him and do right by him. For me, it had an even more special meaning because I imagined all the people with scoliosis seeing this. When I learned about him for the first time, there was just a small window of opportunity. I could have so easily missed it and if I had, my life would have been completely different. I probably would have found out about him later, but I met him at the exact time I needed him. How many people were meeting him now for the first time when they needed him?

Before this, I had only been a soldier for Richard. Now I was a soldier for Richard and people with scoliosis. Oh, I still fought for scoliosis patients and if I saw an opportunity to help, I took it, but I hadn’t found my calling yet. As I was running around online talking about this with others, I found myself correcting them about scoliosis. Of course there were haters, there always are, but I was getting more and more bothered and upset with their behavior. I was horrified of what I would have thought if I read what they were saying back when I was finding my footing with my scoliosis. Even though I was an adult and long left those years behind, sometimes I felt like I was a little girl surrounded by bullies again.

As a soldier for Richard, I joined in the campaign to have him buried in York Minster. When it first became a possibility that this could be him, I wanted Westminster and nothing less would do. He was going to get a full state funeral with every honor the Queen would receive if it had been her funeral. I was watching the proceedings with an eagle eye for any possible slight. In one of the many discussions, someone showed me an article about why he should be buried in York Minster and that it was even where he wanted to be buried. I read it and did a little more research of my own, and soon enough I changed “Westminster” to “York Minster”. Even though at the time I would have like to see him be buried in Westminster and to me it was a show of giving him our highest honor, he wanted to be buried in York Minster and that was more important.

As a scoliosis patient and a Ricardian, I also fought for respect of his remains. My eagle eye was also watching the pictures and I was ready to pounce if I saw anything disrespectful. I knew there was a balance between the media being able to truthfully report this was him and being respectful to the dead. I have been sickened by the media’s lack of respect for the dead and filming body bags coming out of buildings. I have been sickened with the disturbing of the dead out of curiosity. I was not going to let them do this to Richard and get away with it.

I was pleased with what I read initially about how people from the media were taken into a room at the University of Leicester with religious officials present and asked to remain quiet and respectful. They were not allowed to take pictures. I actually defended them for a while. Then I started seeing the pictures of the bones laid out. Those weren’t just Richard’s bones, those were my bones. Those were the bones of anyone with scoliosis. I’m sharing my story here, but it is my choice and I am inviting you into my world. I have given presentations about scoliosis and have used my x-rays as examples, but it was my choice. I was even asked to give a DNA sample for scoliosis studies and I happily complied. I had to sign a lot of paperwork giving them permission to do so because laws are so strict about sharing medical information. The reason the laws are so strict is because so many people have been in Richard’s situation with medical information being shared without their permission. It is a violation!

As I said, I saw this as an opportunity to educate the world about scoliosis and bring awareness to what it is like for scoliosis patients. Personally, I have sacrificed a lot to do this and have done a lot of work. If there was any way the displaying of Richard’s bones would have helped in this endeavor, I would have found it. It is very, very wrong.

As I fought for Richard in this new battle, I have made so many wonderful friends. Ricardian friends are extra special because by definition, true Ricardians are some of the loyalest people around. They have already gone to battle for Richard without expecting any reward, you can bet they will go to battle for you. Something else I have noticed is that there are a lot of people out there fighting for Richard who have spinal conditions themselves. In fact, I’m not the only one who’s life Richard has touched in this way.

Everyone with scoliosis is a brother or a sister. We take care of our own. We all share something nobody on the outside can understand.

My scoliosis was inherited from my grandmother. She died a few years ago and I said with pride that if I ever missed her, all I had to do was look in the mirror. I jokingly call myself her “clone”, but it actually isn’t far from the truth. Not only did I inherit her scoliosis, but I also inherited her determination. I don’t think I would have gotten through those years without it. When I was a baby, I was in a hurry to do everything and wanted to crawl before my neck was strong enough to hold up my head. There is a picture of me on my hands and knees with an expression of determination on my little face identical to my grandma’s.

Because of the curve in my spine, I have what I call a “slippery disc”. After it slipped the first time, it keeps threatening to do so again and has done it a few other times. Most of the time it just threatens, though. One of these threats was a few years ago just before my grandma died and I was alone with her. I didn’t have my medication with me and called someone to bring it over and waited with my grandma. She was very upset and she started telling me how sorry she was and how guilty she felt for giving me her bad back. I knew she felt guilty about it, especially when I was wearing my brace, but I didn’t realize how serious she was.

“Grandma!” I interrupted. “It isn’t your fault! I wouldn’t even be here if it weren’t for you! Would you rather I had never been born? I’m honored to have your genes!”

We both looked at each other in surprise. Did I just say I was glad I had scoliosis? At that particular moment I was in agony so if I was asked flat out I probably would have said, “NO!”, but what about today? It is June 2015 and I’m 29 years old. I did not enjoy the whole experience, but I wouldn’t be who I am today without it. I am proud of who I am and what I have accomplished. My life has not been an easy one and I don’t know how I would have gotten through some of it without having gone through that crucible that refined my spirit first. I have been able to help others and make a difference and I don’t plan on stopping any time soon.

I might have to alter some of my clothes when my hem isn’t straight or if the bodice isn’t lying right because of my uneven shoulders. I still go around asking people if they can tell one leg is longer than the other or one shoulder is higher than the other. They see the x-rays or Richard’s skeleton and shake their heads at how horribly misshapen he must have been. I show them the reality and maybe the next time they hear “scoliosis”, they might think of it differently.

I might never wear a backless dress, but sometimes when I see an x-ray, the curves seem beautiful. Graceful. Special. Me.

People say they keep another person “in their heart”. How many people can say they keep their heroes in their heart and their back? I had an x-ray done of my lungs recently and I still felt a little jolt when I saw the scoliosis in there, too. Instead of the fear I felt all those years ago when I saw the first x-ray, now I smile. There’s Richard. There’s Grandma. There’s strength. There’s me.

From what I remember, the program was about an hour long and I think it had a few other history stories as well. It started with an introduction meant to grab viewers’ attention with the mention of a king, a historical mystery, and a spinal condition. Immediately I wondered if it was scoliosis and the writers definitely succeeded in grabbing my attention! I didn’t really know of other spinal conditions other than scoliosis and from what I did know, it seemed somewhat obscure. There must be hundreds of others out there and this king’s condition was probably one I had never heard about. Still, the teasers made me wonder and before they even got to his segment, I felt some sort of affinity with this king and his suffering.

I listened to King Richard’s story and how he was said to be a horrible monster with an evil heart. The teaser warned me that some people felt otherwise, so I withheld any judgement. Besides, the propaganda story was a little too over the top for me to believe. The Richard III Society was introduced and in their rebuttal against the Tudor allegations, this “mysterious disease” they believed Richard had was revealed. Scoliosis. Like me.

I have since met many people with scoliosis, but Richard was one of the first. I knew it was very likely I had inherited the gene from my grandmother, but she had so many other things that complicated hers’ that I wasn’t sure how much it counted. I had heard of a lot of other people’s friends and acquaintances who had it, but I don’t think I met any of these people in person. Of course there were people with mild cases, but it didn’t hamper their lives too much. What I went through with my scoliosis, mostly wearing the brace, is something that I don’t think anyone can really understand unless they have gone through it themselves. I am so grateful to all the support I have received and the compassion and kindness that people have shown me in my struggles. I don’t value any of this less because they don’t have scoliosis themselves, in fact I am glad they don’t have to go through what I did. I am not happy that another human being, King Richard, had to suffer as well, but since he did, we have a special bond that only someone who has gone through this can understand.

This bonding phenomenon I have noticed among other groups of people as well. Scoliosis was just at the beginning of my medical adventures that continue to this day, mainly of the auto immune variety. When I find out someone is going through something similar to me, they immediately become my brother or sister in this battle. We’re on the same team, fighting the same battle, and we share something that nobody else can understand. We are encouraged and inspired by what our fellow soldiers have been able to do and accomplish. We are not alone.

The program I saw on TV was not just about Richard’s spine and it went much deeper than me and Richard having the same diagnosis. This was the story of a man who had his good name taken from him. I have done my research and encourage others to come to their own conclusions, but I do not believe in the traditionalist/Shakespeare version of the story. I actually find that propaganda offensive not only for Richard’s sake but for my own as well. There will always be bullies out there and they don’t just live in school playgrounds, either. They can be adults from positions of authority to nasty little trolls online. Bullies are traditionally viewed as confrontational, but the isn’t a prerequisite. Passive aggressiveness is a sneakier way of doing things but it is bullying just the same. They are too cowardly to speak directly to a person and can say something knowing the other person will overhear. Or they can wait until someone has died and can no longer defend himself.

I am still alive and as such have only experienced bullies on this side of the grave, but Richard has been bullied for hundreds of years. Only after he died did people have the courage to make fun of his back, each story more outrageous than the next. They decided that this somehow defined his character in a negative way. Somehow having a spinal deformity meant he was a bad, even evil person. As ridiculous as it sounds to the modern world, it still continues. Recently there was an ad that was pulled after enough people complained. The tagline was something like, “Twisted back, twisted mind?” Whatever attack is made upon Richard with his scoliosis is an attack on everyone with scoliosis. It is bullying. There is no immunity for time or position.

There was always at least one instigator of mischief and on this day I found him right away. He was at least two heads shorter than me, but what he lacked in inches he made up for with energy. His rampage through the playroom kept me on my toes as I balanced keeping him occupied without other children running to their mothers because of him. At one point I had to restrain him or face all out mutiny from everyone else. I had to think of a way to keep him from interrupting the moms and I had to think of it quickly because he had already made his way around me.

“Wait!” I had an idea. “You take karate, right?”

That got his attention. He stopped and slowly turned around halfway to look at me, eyebrows raised in question. The voices behind me quieted and I knew I had their attention as well.

“You must be pretty good, you’ve been taking it for a while now, haven’t you?”

He turned around fully to face me and told me the color of his belt. It didn’t mean anything to me, but the important part was that the appeal to his vanity was working. It was a bluff on my part, but luckily he didn’t see through it. This was good since I had an even bigger bluff in mind.

“I’ll bet if you karate chopped me on the stomach, it would really hurt, right?”

There were a few gasps from behind me. Good, I needed witnesses. His eyebrows went up again and this time his jaw dropped, too.

“What if I let you karate chop me as hard as you can on my stomach if you promise not to leave this room until your mom comes to get you?”

Even more gasps and a few exclamations. I caught my brother’s eye and signaled him to keep quiet.

The little rebel sputtered a bit before he asked, “Are you sure?!”

I uncrossed my arms and held them out in invitation.

“Okay, but this is really going to hurt!”

I smiled to myself. Indeed it was. Him.

After his hand connected with my brace, he let out a howl of pain and cradled his hand to his chest with his other one. Success! He had a flair for the dramatic as did I and in a few minutes he was back to playing with everyone else. He kept his promise and I kept my peace.

I’m a silver linings kind of person and there definitely were benefits to wearing that brace. When I think back to the time I had to wear it, most of the individual memories are the good ones. Of course I remember the discomfort and fear of the actual brace and condition, but my other memories of life with the brace seem more like, “Look what I accomplished!” I conquered the brace. I was able to have happy memories not only in spite of it but because of it, too!

There are bad memories, though. I have done my best to work past them and forget them, but there is always the memory of feeling self conscious, pathetic, and bullied. There have been a few stories I have used as examples in the past, but I’m hesitant to write them here for the sake of those involved. These people are forgiven and I don’t want them to feel badly if I use their specific story.

At that age, we are already so emotionally fragile and being accepted is so important. The fear of being a social outcast is greater and closer. Some people are on the hunt for weaker prey and wearing that brace was like wearing a target. I would walk the hallways at school in fear, just waiting for someone to jump out and start calling me a “freak”. If they didn’t say anything, I knew they were all thinking it. Weren’t they? I found out someone sitting behind me in one of my classes was trying to see what all they could do to the back of my shirt because I couldn’t feel anything. How many people were doing that? How many people were talking about me that I couldn’t hear?

When I started going to junior high and started having to change into my gym clothes in the locker room, I thought it might be one of those silver linings that I had the brace. If I was uncomfortable about taking off my shirt in front of the nurse, can you imagine how uncomfortable it would have been in front of several people? With the undershirt I wore between my brace and my skin, my entire torso was covered from the neck down. However, that first time changing, I could hear people stop talking when they saw the brace. I had my back to them and imagined what they were seeing. All the straps and metal looked pretty serious, but from the front it didn’t look so dramatic. I changed quickly and left to get into the gym and on my way my teacher met up with me. She knew what had happened and told me I could change in one of the bathroom stalls if I wanted to. They were very strict about it since there were only two stalls and dozens of girls who needed to change, but she made an exception for me. That silver lining did not work out.

People didn’t know how to act around me. I could see them stumble and try to get away as fast as they could. I thought everybody knew about it, but I was constantly finding out that wasn’t true. There was a boy who had been pestering me all school year and I assumed it was because he knew, but towards the end of the school year he tapped my shoulder. Or rather he tried to. I heard a noise behind me and turned around to see him without words for once. His eyes were huge and he was staring at my back trying to ask what that was. I told him it was a back brace and I had scoliosis. I quickly turned back around so he couldn’t see my tears and he mumbled an apology and got as far away from me as he could. He was annoying and I didn’t like him in the first place, so why did it matter so much what he thought?

That isn’t even getting to the bullying, either. There were and are people who would go out of their way to be mean to me about it. Partway through wearing my brace I had to move across the country and start making friends all over again. I already had friends to support me when I first wore the brace, but starting over again I had nothing. There were people I thought were my friends, but looking back I realize some of them weren’t really my friend. Calling yourself a “friend” does not give you the right to say some of those things. It wasn’t just the brace, either. They made fun of my interests and the way I talked. It wasn’t normal that I was interested in things like history, I should be interested in clothes or whoever was on the radio. I should be watching popular movies and stop being such a prude. Embroidery? What was I, some kind of old lady? The brace, though, that was it. If there was any question as to how “normal” I was, the answer was in the brace. Of course no normal person would wear one. Of course I was weird. Of course I was wrong.

“If you fall in, you’ll ruin your brace,” my mom replied. She had a point. The water looked deep enough and my balance was hampered by my torso being immobilized.

“Maybe you can scoot over?” she suggested half-heartedly, knowing it wasn’t nearly as exciting as walking over.

I narrowed my eyes and weighed my options before shaking my head and rising. It was too risky. This was our first hike in the Rocky Mountains and I knew there would be plenty more streams with natural bridges to explore. If there was a chance of water being involved, I would leave my brace in the car next time.

It had been two months since I arrived home with my new brace and a schedule to working my way up to 23 hours a day. After the first few days, it was actually a relief to finally have it. I was determined to not have surgery and now I was able to do something proactive about it. The discomfort only intensified my determination and proved I really was fighting.

A few weeks beforehand, my mom helped me put rubbing alcohol over the skin of my torso to get it ready for the brace. We searched all over for seamless cotton undershirts to use as a barrier between my skin and the brace. The biggest thing to watch out for was sores and if I did get a sore from my brace rubbing against my skin, it would be a setback because I wouldn’t be able to wear the brace until my skin healed. In fact, my orthopedic surgeon had to tell me to slow down!

The brace had a strong, white plexiglass surface several millimeters thick. Inside was padding that provided some kind of cushioning with additional padding to push my spine into place. This was several inches thick in some places. Most people have what is called a “C” curve or an “S” curve. The spine follows the shapes of those letters and it basically means there is either one curve or two. I have an “S” curve and so my brace covered most of my torso and in the back it went from around my tailbone to just below the shoulders. In the front it went from a few inches below my bellybutton to the bottom of my sternum. Because of the way my spine curves, one shoulder is higher than the other, so on my right side it went all the way up to my armpit to push it up and it wasn’t quite so high on the left side. The back was cut so that it could be forced open enough for me to get in it. For all the hardness of the shell it was pretty flexible. Once inside there were heavy duty straps like a belt across the gap in the middle. The one on the bottom was straight across while the two above that criss-crossed. To secure them in place was a row of metal “teeth” that were sharp and caught and held the straps. If you look closely, I still have a scar on my right hand from getting in the way of those teeth! That wasn’t the only cut, just the one that was deep enough to leave a scar. Those teeth also ripped up several bed sheets and shirts. The brace had several alterations as time went on and eventually I even had to get a new one, but this was what it was like when I first wore it.

This brace was custom made and really is like a piece of art. There were a few sizes to start off with and as I was warned, it really was like a barrel at first. There were a few curves, mostly at the hips, but other than that it had to be cut down and moulded to fit my body. The process took several hours with my orthopedic surgeon running back and forth between my room and her “studio”. She created a sculpture so as far as I’m concerned, they can call that room whatever they want but it will still be an artist’s studio. She used a marker to mark where she needed to cut and what I think was some kind of trigonometry or some other complicated formula to mark where things were supposed to be in relation to others. She heated the shell and shaped it, then added the extra padding with a perfect slope that blended into the original planning and didn’t just jut into my side. It might sound strange, but by the time she was finished with it, the brace was so beautiful and graceful looking.

That was my first incarnation of my back brace. It seems like it was constantly being altered as I grew and I even had a second one when there was no way to salvage my first brace into what I needed. After being compressed long enough, some fat actually does shrink. My orthopedic surgeon compared it to wearing a watch and it having an imprint on your wrist at the end of the day. I was already underweight when I first wore the brace so she didn’t think I would shrink that much, but it did get to the point where I was laced in as tight as it would go but the brace was still too loose. That was dangerous because the more it moves and causes friction, the easier it is to get sores, so a couple inches were shaved off the sides so it was tight again. Then I had a growth spurt and it needed to be bigger so they made a cut down the front and put on a strip of the hard material. By the time I got my second one, they didn’t need to go through the whole fitting process again and used my old brace for reference. I was very excited that this one had velcro instead of those evil metal “teeth” on the straps!

I moved to another part of the country while still having to wear this brace and my new specialist didn’t think the top of my “S” curve was bad enough to need the top part of the brace and he cut it off. He also told me that I didn’t need to be wearing it 23 hours a day and changed it to 16. By this time, surgery sounded less and less like a possibility and I wasn’t so strict with myself.

After a year of wearing it almost 24 hours a day, my original doctor wanted to see how my curves looked without the brace, but the spine does not go back into place as soon as the brace is taken off so the night before this x-ray, I had to sleep without the brace. The x-ray looked very good and things were going as they should and felt like I was one step further away from surgery. However, if it took so long for my spine to get back into place without the brace, why did I need to wear it for 23 hours a day? I had heard of people using it 16 hours a day. She admitted the logic was right but it didn’t work like that if you do it every day. Still, I may have started cheating a bit after that. I started living on the edge and some days wore it for only 22 hours!

I will never forget when my doctor told me I didn’t have to wear my brace anymore in my mid-teens. Before my appointment I had wondered if he might do something like that, but I didn’t think it would be that simple. I couldn’t believe it! I felt so light and FREE! The thing I remember most is savoring being able to feel the softness of my bed at night. To this day I still remember what it was like and never take it for granted.

For such a big moment in my life, indeed one of the top moments I will never forget, I can’t write anything that seems adequate enough. Perhaps it is just the nature of memorable events? I think most people can relate to the feeling of graduating, and it was very close to that. A lot of work, both physical and mental, is put into getting that diploma. Even though some people enjoy school more than others, nobody can deny that there is some kind of confinement in it. To be thrust out of that extreme world can be exhilarating! And just as people have recurring dreams of having to go back to school because they didn’t actually graduate, I have recurring dreams where I have to go back to wearing my brace. I feel the same way in both dreams.

~~~~~

When I first started writing about my experience with scoliosis, I knew I was going to have to be careful with what to put in and what to leave out. I put together an outline and started filling it out but quickly realized I was going to have to cut it down even more. “This isn’t the story of your life!” I thought to myself. Actually, it is. The reason I am having to be so selective about what I share is because it is so much of a part of my life that I wouldn’t be the person I am today without it.

The introduction of scoliosis in my life started with a deceptively harmless letter. I was ten years old and it was just one of the many grown up looking letters from school that I was supposed to deliver to my parents. There was going to be a scoliosis screening and parents were given an opportunity to absent their children if they had any objections. Well, I certainly had objections! I absolutely did not want to take my shirt off in front of someone, especially for some strange disease I had never heard of before. If it was as rare as the letter said it was, why did I have to be tested anyway? The past year of my life had been crazy and it was scientifically impossible for me to have scoliosis on top of everything. It had to be. One of these crazy things was a head injury and the after effects; I couldn’t have another medical issue while I was still working on conquering this other one. There was no need for me to go through the trauma of taking off my shirt because there was no way I could possibly have scoliosis.

I did.

What happened next was a blur of doctors, x-rays, and fear. At first it was not severe enough to do anything, but my pediatrician wanted to monitor it as I grew and every so often I would have it checked and measured again. If it got severe enough, I would be referred to a specialist. After a few of these check-ins, I was on my way to an orthopedic surgeon. There I was told I needed to start wearing a brace because the curve was growing so quickly.

As soon as I stepped into this new world, the word “surgery” was always in the back of my mind. Instead of monsters under my bed, fear of “surgery” kept me awake at night. If I was able to forget about it for a little while, there was no shortage of other people who would remind me that if the brace failed, the next option was “surgery”. This back brace was the only thing between me and “surgery” and I was going to make sure it stayed that way. “Surgery” was to be avoided at all costs.

I remember being in gym class and having to explain to my teammates how my brace worked and that I was limited in what I could do. It was part of a unit on basketball that lasted several weeks and we stayed in the same team for the duration. A week later when our team’s self appointed leader was telling the rest of us his strategy, he looked at me and asked, “Do you still have scoliosis?” His question surprised me more than anything, but later it amused me that he didn’t realize I would always have it. The brace just held it in place so it wouldn’t get worse as I grew.

A scoliosis patient can’t go from having it to not having it, and they can also go a very long time before realizing they do have it. Do the years of ignorance count as having scoliosis? Medically speaking the answer would be “yes”. For me, there was a period of time when I didn’t know I had it and the only reason I did know was because of the screening. I could have gone a very long time without knowing there was anything wrong. When did this all start, though? My conscious journey started with the letter, but it was something else that opened my eyes to the fact that this was very real and very serious and it definitely “counted”.

There were a lot of scoliosis related things that happened leading up to trying on a brace for the first time, but I remember that moment very clearly. It was the jolt that told me this wasn’t a nightmare but real life. My mom and I had a consultation with the orthopedic surgeon who would be making my custom brace. She had me try on a sample one to give me an idea of what it would feel like. Before this time, I think I was in some sort of denial and was waiting for something, anything that would give me a reprieve. It just wasn’t possible for me to wear it. I could have searched for a doctor until I found one who told me I didn’t need to do anything, but the thought of “surgery” was still more horrible than wearing this brace. They told me I would get to the point where I would forget I was wearing it and I had several weeks to work my way up to the 23 hours a day prescribed. I think I knew the beginning was the worst and I tried to focus on that and where I would be in a few months. A few months before it had been winter and a few months later it would be summer. Time goes on and every second was a second closer to turning that corner where I was really used to it. There was no way around it and I faced it the only way I could: head on. That’s what I told myself, anyway.