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.

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.

Day 9: Lucky

Recently I've taken to writing while on the cantilever, an otherwise long and tedious time. Today I was standing, contemplating what to write about when I heard a dripping noise behind me. I turned to see the girl behind me mid-throwup.

Vomit is one of the many bodily fluids that I can't stand to see, hear, or smell; but there it was, dripping right behind me. Okay, no more vomit talk, but that got me to thinking how in the grand scheme of things, scoliosis really isn't that bad.

It's not a debilitating or life-threatening disease. It's not cancer or leukemia, chromes or any autoimmune deficiency. It's not MS or MD. I don't get sick because of it, my body still functions normally. Other than some discomfort and minor aesthetic abnormalities there is no physical pain or deformities that signify a problem. Considering all of the health problems possible, I am lucky.

I have full function of my mind and full control of my body. Fluids stay in my body, and I am overall healthy person. In the big picture, scoliosis isn't so bad after all.

Days 7 & 8: An Update

Yesterday I had my third set of x-rays in the program. The doctor wanted to see how another week of treatment affected my curvature. The x-ray measured my top curve at 37 degrees, one degree higher than the x-ray the week prior but still better then the original 51 degrees. While this slight increase could come from a measurement error, the doctor was still disappointed that my curve hadn't further improved. Perhaps the cantilever wasn't providing enough leverage.

To test this, I had another x-ray taken today while I was wearing the cantilever. While stressed my curve measured at 30 degrees. The doctor was right in his hypothesis, the stressed leverage wasn't low enough so the following relaxed curve size was higher.

To address this a new cantilever was made for me that increased the fulcrum height from seven to nine inches. This alteration provides more leverage on a greater area of my back and spine to be affected. The angle of the fulcrum was also altered to pinpoint the center of my curvature and have the most effect on it. Furthermore, more weight was added to the cantilever to maximize the effectivity.

Hopefully, the new cantilever will reduce my stressed curve to the mid-twenties, bringing the relaxed curve down too. I have two days left at the CLEAR Institute, so hopefully this last minute fiddling will work!

Day 6: Adapting

A new week at back camp means a whole new set of patients. There are four of us returning from last week and four new kids this week, two high school girls and two six year old boys. Looking at the little boys I can't help but to wonder what would be different if that had been me.

Diagnosed with a 48 degree curve at nine, I probably had moderate scoliosis when I was younger, when I was six. What if I had it treated then instead of intense bracing as a pre-teen? Maybe I could have forgone the years of physical pain and embarrassment.

I had a Boston brace for three years that went from my armpit to halfway down one thigh. My brace gave me blisters and cuts, but those went away. It also gave me uneven curves and excess skin flaps that remain to this day. I was lucky when I wore my brace, I had a uniform for school everyday that covered up my bulky body. Unless you punched my stomach, you wouldn't even know it was there.

Bracing was a part of my scoliosis journey, and although it was sometimes a pain I wouldn't take it back. Wearing it for 23 hours a day taught nine year old me commitment and perseverance. My hour out would be for playing sports or playing outside and I learned to enjoy that time to the fullest. In all honesty, after the first couple months I didn't even mind. My brace became a part of me, any subsequent pain was just natural.

Our bodies adapt to our surroundings to optimize living conditions. My body has adapted to the scoliosis and had adapted to treatments before, I know this too will come in time. But as I stand balancing on an exercise disc on a vibrating plate with fifteen pounds weighted on my hips, I can't help but wonder, what if that six year old had been me?

Weekend Fun

...well, sort of. Friday was Day 5 at the CLEAR Institute and we all get half days. Instead of going through three full circuits one and a half are done in the morning. Then they send you home with your cantilever, a Dyna Disc, and a personalized schedule for the weekend.

I had to do two more twenty minute sessions on Friday and four twenty minute sessions on Saturday and Sunday. This was my first experience of how the next 9-12 months will be: doing exercises 120 minutes a day, four times on the cantilever relatively spread apart. For this weekend it was easy. I would do a session when I woke up, then before lunch, in the afternoon, and after dinner. The whole time I would just watch the Olympics, it was really no big deal.

Despite the hour and a half mandated for these exercises, I still had time for some work, food, and fun. I did some of my summer reading, we went out for dinner and lunch, and I got time to play field hockey, soccer, and run. The exercise is a great relief after all of the heavy weights and constraints. Running out soreness and stiffness I'm able to feel like myself again.

Sports make up the majority of my life. Any given week during the school year I'll have at least 10 practices for three different teams. Sports are my social life, my team mates are my best friends. In dealing with my scoliosis it has always been essential to me not to compromise that. This year, however, that might have to change.

Four twenty minute sessions were doable on a summer weekend with no real responsibilities, but during the school year it will be much more difficult to make the time. I am going to have to make sacrifices, sleep being the first of them. I plan on waking up at 5 AM to do a session before school, I'll squeeze in another before practice, one after practice, and probably one at midnight after the massive junior year work load.

No doubt, it will be difficult, and there will be many times I'll wish I didn't have to, but this is my challenge and I know that I can do it. I'll be healthier, fitter, and a bigger person because of it. Scoliosis is my challenge, but this is my life.

Day 4: Meet Megan

There are six of us here at the CLEAR Institute, affectionately called back camp. We all have different backgrounds, different stories, different curve types, different curve severities, and different treatment plans. But we have all been given this opportunity to be here together.

There's a pair of 13 year old twin girls whose mom sits with them through the day; there's a fourteen year old boy named Nick; there's me; there's Zach, an 18 year old competitive swimmer on a scholarship; then, there's Megan.

Megan is a rising high school freshman from Wisconsin with pretty blonde hair and freckles. She too, has severe scoliosis. And like me, CLEAR was her last resort. 

The majority of parents turn to CLEAR as the last step, the desperate measure before an inevitable surgery. To some, like me, surgery is looming. To others, like Megan, surgery is imminent. In fact, Megan had surgery scheduled. For two days ago.

At the beginning of back camp her curve measured at a 52. The second day showed it down to 40 degrees. Surgery is no longer necessary, and may not even happen anymore. Instead of living the rest of her life with a titanium rod down her spine, this pretty little fourteen year old will just get to live: live however she wants with no constraints or restrictions.

This is the story for many of the families that come through here; what initially was an act of desperation becomes the final treatment solution. As long as Megan's 40 stays stable, she could live without any more treatment for the rest of her life. However, there are more Megans out there. There are patients everyday undergoing spinal fusion surgery, accepting the risk of infection or even paralysis, and completely changing their life.

Megan was the lucky one, she got to come here. Tuesday morning at the time booked for the OR she was watching The Sandlot in the traction chair, not under heavy anesthesia. Her family is working on a website to share her story, and spread the message that surgery isn't the only answer. So hopefully, in the future, there will be more little girls with stories more like our Megan's.

Day 3: The New Normal

The days are becoming long and monotonous, I now do the same exercises at the same times and weights three times a day. I've become accustomed to the pulls and constraints, and now I primarily nap through each of the stations. This has quickly become my new normal.

I struggled for a long time with the idea that my normal is different than everyone else's. By default, wouldn't that mean that I am abnormal? My body is different than all of my friends': my hips are uneven, my shoulders aren't straight, I have visible scar tissue from three years of bracing, and my back is "deformed." But all of those things are what make me, me. For half of my life this has been my normal.  And even though scoliosis may separate me from my immediate peer group, there are thousands of men, women, boys, and girls across the whole world that share my definition of normal.

In large part, that is why I'm writing this blog.  To share my thoughts, fears, and experiences to let others with scoliosis know that there are people going through the exact same thing.  There's definitely a comfort in knowing that you are not alone in whatever you go through. I have been blessed with an amazing and supportive group of family and friends; I have been blessed with the opportunities that I have been given. Now I want to share, and be a blessing to somebody else. Because in actuality, my normal may not be so very different from yours.