Thankful

As Thanksgiving weekend wraps up, I realize that I have a lot to be thankful for in my life. Even in regards to scoliosis, I have reason to give thanks. 

I am thankful that doctors found my scoliosis when they did, and that I was able to get treatment. I'm thankful that my scoliosis doctors and my orthotists knew how to best treat me. I'm thankful that the brace did as it was supposed to, and I didn't have spinal fusion surgery in elementary school. I'm thankful for my doctors who check up on me every year. I'm thankful for their support of my journey: my surgeon advocating every option other than surgery, my orthotist for supporting a physical therapist and a chiropractor. I'm thankful for my parents always looking out for me and my future. I'm thankful for my mom scouring the internet and finding the CLEAR Institute. I'm thankful for the alternative options that I have been given. 

Moreover, I'm thankful for all the things that my scoliosis has taught me. I'm thankful for my dedication to wearing the brace for 22 hours per day for 3 years. I'm thankful for the compassion I have developed for those who, like me, are different. I'm thankful for the confidence that I have developed in myself in making my different "normal." I'm thankful for my determination to be myself, regardless of any condition. 

Some days I may complain about back pain or disfigurement, about not being straight or having to do exercises; but overall, I have so much to be thankful for. From my perspective, I can have many more thanks than complaints. 

 

Definition

With senior year and college applications recently on my mind, I have begun to reflect on my past seventeen years and the experiences that have defined my life. Sports have made a huge impact on me, and living in England was really important, but as I have been thinking, I've realized that scoliosis has probably had the most definitive impact on me. 

After being diagnosed so young, I matured quickly. When other kids would make fun of kids for being different, I empathized with them and knew that being different is okay, it's what makes people special. When other kids played outside, I did my exercises. I learned that I had to earn my playtime by dutifully wearing my brace for 23 hours a day and doing all of my exercises. 

As I grew up, I carried these responsibilities with me. I now feel loyal to those who are "different" and have a duty to help and fight for those who can't defend themselves. I also know that I have to work hard for everything, and that the harder I work the more I can overcome. 

For over half of my seventeen years I've lived, struggled, and triumphed with scoliosis. Without a doubt, it has made me who I am. 

A Year Out

It's hard to believe that it's been a year since my time at the CLEAR Institute. In that time I've run through seven different sports seasons, been to four different countries and fourteen different states. I've tutored regularly at the elementary school down the street, and I've tutored at a primary school in the Dominican. I've had a concussion, and of course, I've had my scoliosis. 

A lot has happened, and I've grown from each of my experiences. I'm more confident than I was a year ago, physically and mentally. I stand straighter, my head is more centered, and I walk more normally. Overall, I feel better in my body, and I'm happy with the way that I've gotten here. It's taken dedication, some early mornings, some late nights, but I put in the work to change my body. Even if the numbers don't necessarily agree, I'm incredibly happy with how I turned out to be. 

What Is Success?

First off, apologies. I didn't realize until now that this post never published. This was from my doctor's appointment in May. 

I've met with my scoliosis doctor every year since I was nine years old. She's shared my journey from bracing to the threat of surgery and then to physical therapy. She's constantly encouraged me, and even now, when my curve is back to a 46, she is still pushing me on, finding the positives in everything. 

I've been through the three stages: pain, dread, and comfort. Now I've moved to the next one: done. I've been done with the cantilever for a few weeks now, slowly weening down from four to three to two to one time a day and then just none. 

It kind of just happened naturally, but it also happened according to the plan. Dr Dovorany had told me that I would make the transition and when I went to see my scoliosis doctor here, she approved too. The one person who did not approve was my mother. 

My mom wanted me in the cantilever doing exercises for as long as possible. But clearly as the numbers show, regular cantilever sessions alone were not working for my curve. At first, she and I both took the increase as a failure in the CLEAR Institute's program, but my surgeon doctor helped us see otherwise. She pointed out that it really hadn't gotten worse, it just went back to it's original shape (and that was weeks without exercise). We don't know how it would have progressed if I hadn't done the program, and most importantly, we don't know what will happen in the future. Maybe the cantilever did help when I used it four times a day, but then would I be willing to do it four times a day for the rest of my life? We came to the conclusion that any continuous treatment wouldn't be worth sacrificing my quality of life. At any rate, I'm feeling straighter and better than ever. What are numbers when they don't even affect how I feel? What is success but that which is defined by me and my happiness?

The Three Stages

Over the past few months I have been slowly decommitting from the cantilever; for the past week I haven't done any exercises at all. Over the past six months I've discovered the three stages of therapy: pain, dread, and comfort.

Stage 1: Pain.
This began at the two week intensive boot camp with the various torture-like devices and then continued into the four-time days. The 17 pound weights were heavy, and my back would be aching before each twenty minute session was up. The pain stage lasted for about two months, then began to fade.

Stage 2: Dread.
Slowly my muscles strengthened, and after a while the cantilevers didn't hurt as much, but I still dreaded every time I strapped in. For three months I was apprehensive, and slowly again that too began to fade.

Stage 3: Comfort.
Strangely enough, after five months of exercises, the cantilever began to be a comfort to me. I could feel when I needed it and it felt good to be weighted down.

Comfort is where I am now, but I'm weening down. Sometimes I feel like I need it, but after walking around or exercising I'm fine again. I stand straight without trying and I have less back pain than ever. I go to the doctor's this week for another set of xrays, and we'll see how I have done and maybe discover another stage.

90 Day Update

Somehow ninety days have passed since my time at the CLEAR Institute, and I have finished my first round of physical therapy.  Doing cantilevers three to five times a day was difficult, but somehow I managed to get at least three in all but two of the days. On the weekends I did four, but only twice did I find time for five.  Regardless, my hard work payed off, and my most recent xray shows my curve to be down to forty degrees.

I had the xray done at a local out patient center (although they can be done at a chiropractor, doctor's office, hospital, or even the CLEAR Institute itself). We got the films burned onto a disk and sent them to the CLEAR Institute for measurements.

My upper thoracic curve went from 52 to 40 degrees and all the rotated vertebrae were straightened out.  I am back on my center of gravity, and I stand straighter than ever before.

I am slowly easing off the cantilever and now only do one or two exercises a day. I have my annual check up ninety days from now with my doctors at Children's Hospital, where I will get another xray. Hopefully my improvements will maintain and I can be done by summer!

All the Positives

I've been in school for two weeks now and everything has fallen into schedule. I leave in the morning at 6:30 and then get home at 7 o'clock that night. Usually I have half an hour before I have to leave again for another practice until I get home at 10.

Miraculously, through all this I still have time for doing three cantilevers a day. I do one at 5:30 before I leave, one right after I come home, and one before I go to bed at 11 o'clock at night.

Even more miraculously, I still do all my homework and have maintained straight A's. I utilize my time on the cantilever to do assigned readings for school. Through this, I do an hour of reading every day that I probably wouldn't do otherwise. I have been forced to find time, or make it.

Unlike many of my friends, I don't spend idle time on Facebook or Twitter- I don't have idle time to spend. While I've always been good at time management, the last couple weeks have made me constantly productive.

So while I could be looking at an hour of exercises a day as negative and time consuming, instead I choose to look at the positives. I've already developed better time management skills, more dedication, and I'm much more efficient with my time. I do extra reading and school work I might not do otherwise. There's also that little bonus that every day I feel straighter, and I'm potentially avoiding a life-altering surgery. So yes, while the cantilever is a pain, I am much the better for it.

I Can Feel It

As predicted, using the cantilever has now become a natural part of my day. Although I haven't yet done five sessions in a day, three to four come easily. In fact, it has become a point of such regularity that I notice a difference on less intense days.

My scoliosis was never grossly disfiguring, but I was noticeably unstraight. My hips weren't straight, I didn't stand straight, I was never on my center of gravity. After my two weeks at the CLEAR Institute I was back over my center of gravity, my hips were more even, and I stood noticeably straighter.

For years my "normal" had been a little crooked and I could feel it moving to a better normal. Sometimes I still slump to crooked, but now I can feel it and quickly revert to straight.

Over the past couple weeks I have noticed on my 3-days I tend to slump more often; especially over multiple 3-days in a row.  This tends to be the case during the week, so on the weekends I am sure to make it up with 4-days.

I know that I probably should be doing more sets, but as is so often unfortunately true: the minimum has become the standard. Nevertheless I can still feel the changes in my body, and hope that with discipline they will remain.

Though as difficult as these past few weeks of summer have been, school starts next week, and that's when the real challenge will begin.

Time Crunch

I've been at home for less than a week and I am already realizing how difficult doing all my exercises is going to be. I have managed to squeeze in three sets a day, one day I did four, but have not yet found the time to do five. And it's still summer.

To be fair, I am playing six hours of sports everyday, leaving at 7 o'clock in the morning and getting home after 10 at night. When I'm home in the afternoon I do 2-3 exercises in between eating, sleeping, stretching, and feeling like dying. Then I do another at 10:30 at night after practices.

Because I have to do the exercises I can't go to friends' houses after practice. I can't go out in the afternoon or out to lunch because I have to get home to do my cantilevers. I'm already resenting it.

My schedule honestly isn't going to get any easier when school starts either. So all I can do is push through and act committed. Fake it til it's real and becomes a natural part of my day.

Day 10: Leaving Oz

Although I've reached the end of the two week intensive back camp, it is really only the beginning.

Earlier in the week someone likened this place to the fictional land of Oz. I, of course, am Dorothy; the other patients in this program are the scarecrow, the tinman, the lion, and Todo, all on our own journey but temporarily together; the wonderful assistants Amy and Michelle share the role of Glenda helping us along the way; finally, Doctor Dovornay is the Wizard of Oz. The man with the seemingly mythical solution of chiropractics for a problem I've faced for so long. We trusted him almost blindly, with only references as support, in his methods that were contradicted by my accomplished medical doctor and orthotist. And still we are trusting his hypotheses as I go home and do exercises the Wizard has prescribed for the next several months.

I took two more x-rays the last day, one in my second cantilever, one as my final out of it. My final was still mid-thirties, showing a stability over the past two weeks. The x-ray in the second cantilever was at 28, so mid-thirties might be the lowest my curve ever gets. This second cantilever was the higher one made last-minute for me on Wednesday, but the x-ray showed that the doctor knew what he was doing in his adjustments. The new cantilever not only pushes to straighten my spine but also rotates the vertebrae back in place by straightening the multifidus muscle, correcting a core problem of scoliosis. The Wizard got it right.

As I leave Oz and go home I'm still on a journey, I have to do exercises on the cantilever 3-5 times a day. In 3 months we will send new x-rays back to the doctor and he will make a new plan for the next few months. There really is no place like home, but my time in Oz will stay with me forever.