Bent, Not Broken: My Scoliosis Story (among other things)

The First Day (BRACE!)

First of all, I just really want to apologize for how late this chapter is coming out. Those of you reading this likely know the trials life throws at us, and life has been testing me lately, so I haven't really had the time or ambition to write again. Full disclosure, I've been in the brace for a week as I'm writing this, and since that day have hidden and cried and decorated and talked and sang and hid some more. Honestly, bless everyone who's had to deal with a diagnosis of any kind, I now understand a little bit of what it's like to have your life swing in the balance of your condition. So, here's my week...
I couldn't sleep the night before March 24th, ironically an exact month from being told I would need to be braced 23 hours a day for up to two years of my life. I had been dreading the next morning for a month and longer, constantly apprehensive of the changes about to be made and acutely aware of the curve that both my spine and my life had taken. I was nervous, confused, scared, apprehensive, anxious, and ashamed. The weeks between being told I would need bracing to prevent my progression and the arrival of my plastic cage, my mind couldn't stay far from thoughts of my spine as I continued to see doctors, sometimes several times a week. It was easy to be in denial, to push away thoughts of treatment as just another chapter in this book. Most days, I wished it were. But I just wanted that day to come and go, so I could stop the suspense.
I had been shocked by the action necessary leading up to my treatment. Of course, I was measured and casted for the brace itself, but I also had to meet with the school counselor, nurse, and psychologist to set up a 504 plan (plan for people with physical restraints) and sensitivity training, where I'd be required to speak to all eight homerooms in my grade about my treatment. I also had to see a physical therapist. Long story short, I hated it. If you're at the point where physical therapy is an option for you, you should definitely consider it. But I couldn't stand it. My therapist was, of course, doing her job, but in doing so, was pointing out the "deformed" hump on my back, the "abnormal" dent in my side, the "uneven" tilt to my shoulders. The distortions my spine had left imprinted in my muscles, the "weak," the "immobile," the "unused." Those words, deformed, abnormal, uneven, weak, immobile, and unused, were all the things I had lived ashamed of, trying to hide from others, and hide from myself. I was exposed, and I hated it.
Two days later, I went to my orthotist's clinic to pick up my brace. I didn't know exactly what was going to happen, but I knew that day was the first day of the next chapter of my life. Things were about to change, and there was no going back. I woke up early in the morning, pulled myself together just enough to be presentable, and sat numbly on the drive there. Once I got there, the orthotist took out the brace, and I was shocked by how HUGE it looked. She helped me into it, but I've been able to do the straps myself from the start, as swim has given me really flexible arms. She took it back to make some fixes, which took about half an hour, and when she came back, it fit the way she wanted it to. It comes up right under my bra strap in the front (can't think of a nicer way to say that, sorry guys), and right under my shoulder blades in the back. It prods under my left armpit, holding up the shoulder that normally falls lower than the other. It also comes down halfway down my butt (again, no nice way to say that, guys), and just below the top of my hip bones in the front, dipping down farther on my left hip.
It's not comfortable. It's tight. It rubs. At first, it aches. And may the world help you when you have an itch under it, because there's NO fixing that. And all of this was happening over my spring break, when all of my friends were traveling and seeing friends, I hid in my room. I was supposed to go with the orthotist's schedule, three hours the first day, six the second, eight the third, etc. I didn't care. I wore it eighteen hours after that hour and a half long appointment, and slept with it the first night. Yes, it hurt. No, my clothes didn't fit over it. But I'll be darned if I'm going to do this for over a year and have to have surgery in the end. I know (and fear) that I might, no matter how I fight this, but I refuse to do this and  not do it right.
The first day back to school was nerve-wrecking. Armed with a baggy sweatshirt and a zero-conversation policy, I thought I had this down- until I realized two things upon entering the school. 1) I would HAVE to have a conversation, with the 200 kids I was supposed to present my brace to, and 2) it was a Physical Ed. (Gym) day. When we went to homerooms, it was rough. Our guidance counselor went over the brace, our school nurse went over scoliosis, and I fidgeted with my brace behind them, answering questions when they came up. But if talking to your grade (or class) is an option for you, I really suggest you do it. It sucks to do, but it keeps everyone from making up rumors, and you feel a lot better when you don't have to hide it.
The second day I was going to wear the brace to school, I had been consistently been wearing it over 20 hours a day. I hadn't gotten a lot of sleep, and I was stressed out. I had made it this far without a breakdown- but turns out it was just a delayed reaction. Reality hit as I was going through my drawers, trying to wear anything but a sweatshirt- I was going to be in this for months, if not years, of my teenage life. I wasn't going to get that time back. I was going to spend it wallowing in sweatshirts, and keeping to myself as I had since I started bracing, shutting out my friends, who tried SO HARD to help me. I hid, ironically, in my closet and cried, not because I was upset at the clothes, but because that was where I had hid months before from my dad when I was terrified of him finding me, behind a shelf, pressed against the wall. But I couldn't hide anymore. Everything I was afraid of was tight against my chest and throbbing in my head. I couldn't run, couldn't hide. So I cried. I was going to be in this thing for months or years, and it wouldn't fix ANYTHING. It barely helped my back pain, although it did some days, and I could still end up needing surgery, even after all this.
But, of course, I had to stand up and go back to school. I wore another sweatshirt and hept to myself, but things started to look up a little after that. Even though my mind still can't accept the brace, my body is learning to relax in it, and it's helping my pain more and more. I let loose a little, and it's become a joke between my friends and I. Life goes on. I had to figure some things out, from gym to sleeping to sitting for long amounts of times, to dressing every morning (if you want me to do an adaptations chapter, let me know.) I had pretty much ignored my Wattpad for a while, so it was quite the shock when I came back to 426 reads! Thank you guys so much for being here with me, it really does mean a lot to me.
    Anyways, I start swim again tomorrow, and I'm both excited and scared. I miss being in the water and competing so much, but I haven't competed since I was diagnosed. To be honest, I've been too afraid I won't be able to do something, so I haven't even tried my strokes. My pain does get worse out of brace, will sometimes get worse after a lot of exercise, and sometimes limits my flexibility. I'll do a sports update tomorrow once I see how that goes, but as excited as I am, I'm scared I won't be able to compete like I used to. Either way, life has been interesting. I should probably do another update on my life outside of bracing too, but I feel like I'm annoying you guys, I don't know.
    Thank you all so much for walking this journey with me, for 426 reads, for the love and support I've gotten as I've told my story. Thank you for showing me that I'm not alone, and that we can be strong. Feel free to PM me if you need to talk. It doesn't have to be scoliosis, I really love talking to you guys, and especially for my chapter that allude at mental illness or other emotional aspects, I've had a bunch of people who just wanted to talk, and that's cool. I won't judge. I love you all, and I'm so glad we're in this together. Best wishes,
-E