The following is am article my parents wrote about what having a daughter with scoliosis is like.
The day we brought Kate home from the orthopedist was one we will never forget. Kate was in tears before long because the Boston brace she as wearing was so uncomfortable. My mother in law who was visiting at the time was mad at us for -- in her view -- making Kate suffer. We felt we made the right decision but doubt crept up on us as Kate's discomfort continued, compounded by feelings of guilt.
We had done a substantial amount of research before moving ahead with the brace, tracking down and pouring over articles in medical journals analyzing the effectiveness of bracing and speaking with friends and acquaintances in the medical community. And because my first cousin was diagnosed with scoliosis and braced when we were growing up, I had some familiarity with the experience. But as all the parents out there will attest, there is a different sort or pain and fear that one feels when your own child is suffering.
Adjusting to the brace was by no means an overnight process. But in part because Kate was so young and so understanding when this journey started, the most acute discomfort dissipated within days. To say Kate was a good sport would be a gross understatement; she was amazing during the process. I have heard from parents and doctors about children complaining incessantly and taking of the brace as soon as they are out of the watchful eyes of their parents. Not so with Kate.
Unfortunately, bracing is not 100 percent effective, even for model patients. Fear of this fact still lingers in my mind. But after a decade in the brace, Kate can now wear clothes that fit her and, more importantly, shows no signs of having a curve that is more severe than before she began wearing the brace.
I hope that reading about my parents' perspective on scoliosis helps you to gain a deeper understanding on what being a parent of someone with scoliosis is like...whenever someone you love may be struggling, it is hard to watch, but it's always important to remember we're bent, not broken! :)
This summer was an absolute whirlwind. It both felt like it went on forever and went in the blink of an eye at the same time. This year is just flying by...I swear I was just watching the ball drop in NYC.
The past 10 weeks were glorious ones, and despite the speed with which they went, it was quite a busy summer. But, I always like to think that it’s better to be busy than not. This summer, for me, was the perfect combination of busy and fun. With that, let’s dive deep into the best bits from this summer…
Phasing out of the brace In June, I started only wearing my brace at night, and my, has it been GLORIOUS. Having more time out of the brace meant my first full beach day, two swim practices a day (one of the few cons of not wearing a brace), and a lot of sore muscles. Surprisingly enough, my muscles are still getting used to the brace-free lifestyle, but I’m happy to report that progress is being made, and for the bad days, my buddy Al (aka my foam roller) can assist me in “rolling out” the pain (yes, I can feel you cringing through the screen, but I just couldn’t resist).
Swimming Speaking of the dreaded practices, most of my summer was spent splashing around in freezing water at 5:30 in the morning. Gotta love summer break. Even though I hated having to wake up even earlier than during the school year, I have to admit, the early practices definitely helped keep my back lose throughout the entire day. Plus, I saw some improvements in my swimming as a result of less bracing - that’s right, my (nonexistent) back muscles are finally getting the workout they’ve been avoiding from years of being supported by my brace.
Art I used to take weekly art classes, but once high school started, I didn’t have enough time for them. Luckily, I forced myself to make time for my art, and I have no regrets. Getting back into my art reminded me of just how much it helped with my overall wellbeing.
New York I love traveling, and this summer, I got to travel to the East Coast with my family. We went to New York, Massachusetts, and New Jersey. And the best part? I got to fly brace-free. And my, oh my, was it AMAZING. You can read more about my trip here.
Bloggy Bits I could not have asked for a better summer in terms of this blog, and of course, I have you to thank for that. This summer, I reached 1,500 views of the blog *insert party horn sound effect here*, and connected with so many of you, who were willing to share your stories. I also (finally) started a Bent Not Broken instagram account (shameless self-promo: @bentnotbrokenscoliosis ;).
P.S. My last doctor's appointment and x-ray is in less than a month, so keep an eye out for an article about that! Whether you too, are nearing your last appointment, or you were just diagnosed, remember, we're bent, not broken! :)
The second week of August is THE. BEST. The swim season is over, and the first few weeks of August are the only time of the entire year that I don’t have to wake up at 4:30 in the morning to go splash around in a cold, dark hole in the ground. School still hasn’t started yet, so I am stress-free (or at least as stress-free as a rising junior in high school can be...I’m at the point in my life when people start asking what you want to do, where you want to go to college...the fun never stops). My most fond memories of summer always seem to come from this one week.
Every year, my family goes to the East Coast for a week to visit family and channel our inner tourists. As much as I enjoy seeing trees and grass that isn’t brown from the Southern California heat, I have to include myself in the majority of sane human beings when it comes to flights. I don’t like them. Who does? What’s that phrase? It’s more about the journey than the destination? While I’m all about motivational quotes, when it comes to traveling, I’m ready and willing to that I am, without a doubt, a destination person.
What makes sitting in a tin can, thousands of miles above Earth, with recycled air giving you a headache even more fun? A brace. Yep, you saw it coming. Trying to find a comfortable position, having a stiff back that you can’t stretch, the list goes on and on. But, that’s all I’ve ever known. And, seeing a view of NYC from the Empire State building always seemed to wipe away any negative thoughts I had.
For this year’s trip, I FINALLY got to go on the plane brace-free. And I must say, I’ve never loved planes more. While I still suffered the same symptoms that any person on a six hour flight does - stiffness, hunger, exhaustion - I couldn’t stop smiling.
I did a day in my life using instagram stories to document the day, because it was one that I don’t want to forget - check out my insta stories: @bentnotbrokenscoliosis *insert shameless self promoting here*. As happy and comfortable as I was, let’s just say that I would gladly taking apparating (just to clarify, for the muggles, it’s a Harry Potter reference) over a plane ride any day.
I’m a Positive Polly most of the time, but, as you may have noticed by the last post, I was all hot and bothered after THE appointment. Now, I don’t have an explanation for what I wrote, and the more time that has past, the less sense it seems to make (in my experience, it usually works the other way around *insert shrugging emoji-like thing made out of parentheses*).
However, time has definitely helped set my head straight. It has been well over a month since I cut my brace wearing nearly in half, and it has been ABSOLUTE BLISS, let me tell you. For the first week or so, my back was a bit sore from adjusting to not having a little plastic friend to help me stand up straight (and, I must admit, there are still mornings that I wake up hobbling around like my grandpa). But, that soreness has been worth it. It has been so great to be able to swim two practices in a day without having to worry about rushing home to try to put on the brace because I’ve already been out of it for too long (or, at least, it feels as good as almost 10 miles of swimming and an hour of weights could feel?).
There is still a part of me, that sometimes, wants to keep my brace on, or wear it out, just for the sake of having it with me. This is the part of me that is still hard to understand. Has anyone else dealt with this? It’s strange, but having the brace off less has definitely made me appreciate it more.
That’s not to say that there are times, when (as selfish as this is), I wish I could have the brace off even longer than the 14 hours that my doctor currently allows. It was only two months ago that I was wearing the brace 20 hours. Wow. These feelings are pretty rare, though.
All in all, I have to admit, I have been lovin’ this non brace life...especially considering the hot weather that has come to visit (it was 115 degrees today! I was only outside for a few minutes at a time, but as soon as I would step out of the airconditioning, the warm air would wrap around me like a cozy hug (or suffocate me like a blanket that cannot be undone...same difference).
Wherever you are in your scoliosis journey, whether you’ve just been braced and it seems like the non-brace life is non-existence, or you are completely done with bracing, and as happy as a clam, it is important for us to always remember, we’re bent, not broken! :)
The big one. This is it. Honestly, I don’t know how to start writing this. About a month ago, I found out that a) I officially wouldn’t have to have spinal fusion surgery and b) I could FINALLY start to slowly transition out of my brace. I’ll be completely honest, I was an emotional wreck (I could barely make it to the elevator without bursting into tears), but not in the way that you might imagine. I was upset. Really upset. There was underlying happiness, which I know now, but at that split second, I was on an emotional roller coaster. Before I even began to drive home, I got in the car after the appointment, whipped out my notebook, and wrote until my hand felt like it was going to fall off. Then, I recently opened up that book and reread what I wrote. Most of it doesn’t make sense unless you’ve been in the same position in that you’ve worn a brace for a decade and been told that it’s all over. But even for those of you in that position, this still might not make sense. I’m going to do this in two parts: this article will just be an excerpt from what I wrote, and in the next article, I’ll give an update about how I feel after having a bit of time to cope with everything. Here we go:
I found out that I could start transitioning out of my brace today. I’ve been waiting for this day for almost 10 years. So I should be happy. Right?
To be honest, I’m upset. I’ve spent the past year slowly buying clothes for a non-brace life. But my doctor told me that I have to keep my brace on 14 hours a day, which means that, with swim practice, I still have to wear it to school, anyway. (Message from future Kate: reading this back, I sound like a raging lunatic. I’m sorry if this part is insensitive...I know that finding out that I wouldn’t have to have surgery and limiting my hours was great news, but I was just all over the place that day).
But I don’t think that’s why I’m sitting alone in my car, writing while my tears are staining my brand new notebook. I have to stop wearing the brace. In a combination of disbelief, nostalgia, and sadness, I’m upset that I have to stop wearing somethings that has given me so much sh*t. (Message from future Kate: another apology...sorry to curse, but I’m trying to just copy what I wrote word for word).
This brace is one of the few things in my life that I always had on the agenda. Almost like something I could depend on. I’ve had it longer than I’ve had any of my friends. And there is somethings so important about those things in life that makes letting go of this brace so difficult for me, despite how much I’ve wanted to get out of it.
This is definitely not the state I expected to be in after finding out that I was done. The appointment itself was anticlimactic. I waited for about an hour, only to see my doctor for less than five minutes. All of my birthday-candle-blowing-wishes, lucky pennies, dandelion-fluff-blowing-hopes, finger crosses, fortune cookie messages that I’ve poured towards a single moment. Gone. Maybe I’m scared because now I have to find something else to look forward to in my life. I don’t know what to think, but I never expected this.
It sounds ridiculous, and must be really hard to understand. I just feel like I’m known as the scoliosis girl, and somehow, losing the brace is like losing that identity. I know that in the coming years, there will be times that I will be so glad not to have to wear a brace, but right now, all I can think about is the fact that I’m losing it.
I just wish I had more time. It’s crazy. I know. As strange as this may sound, I wish I could wear my brace longer (Message from future Kate: Ok, here’s where I started to go crazy. More time to wear the brace? I was off my rocker).
So, that was it. Reading this back, I don’t really know where my head was at, and as much as I hate when people tell me this, it’s just something you have to experience...it’s so hard to explain. All of this wack aside, I would just like to thank all of you for being there for me. These past few months have made my scoliosis journey so much more beneficial and I’m so lucky to have gotten to share it with you. No matter where you are in your journey, know that this community is here for you. And remember, we’re bent, not broken! :)
Unlike most of the home videos you see of Olympians, I was definitely not a natural swimmer. When I first got into the pool, I could float, but that was about it. When I was first taught to swim butterfly, I just started swimming breaststroke (and, to be honest, sometimes, I still do - fly is definitely not my thing). I began swimming when I was 7 years old, about a month after I was diagnosed with scoliosis, which is no coincidence. My parents had done a ton of research when I was first diagnosed, and found out that a lot of people with scoliosis join a swim team to strengthen their back muscles. While physical therapy and sports, like swimming, have not been proven to reduce spine curvature, they help keep you fit and help your muscles. But above all of this, swimming has become an outlet for me to forget about my scoliosis when I need it.
I started swimming by joining a local club team. Prior to this, I had taken swim lessons, but I wasn't competitive, and could barely swim two laps without taking a breather. Swimming started out as a fun, social part of my life. I only practiced a couple times a week and I spent most of the practice with my friends, splashing in the shallow end. I was in the lowest group and didn’t take swimming seriously.
After a couple years, I moved to a different group with older kids. I went to more practices and started going to swim meets, where I would compete. Slowly, I grew competitive. I wanted to go to championship meets and swim with the older kids. I really realized that I wanted to take swimming seriously when I was about 9 years old. Everyone in my group, aside from a few guppies (including me) were going to a meet all the way in Las Vegas and my team was hosting a big party for them. I remember watching my friends from afar, eating their heap of pasta (watching swimmers eat is fascinating...it's like our stomach is a black hole). That's when I really began to try hard and practice, and my love of swimming grew.
Once I turned 13, my swim team began to offer two practices a day during the summer. But because I wore a Boston brace, and I had to wear the brace a certain amount of time, I couldn’t go to the practices. Ugh I was very upset. I knew that I would be at a disadvantage, as I was getting less practice time than the other swimmers. So, I made sure that I went to as many practices as my back allowed for, and continued to try hard.
There were times, and still are, that it was hard to find the motivation to push myself in practice. When I did poorly at a meet, or I was tired, I would grow frustrated and question whether or not I really wanted to swim, but I kept going. I, like most swimmers, have a love-hate relationship with swimming...it isn't fun when you're dying in practice, but I can't go more than a few days without stopping by the pool. It's addicting.
As I started going to more meets, I met swimmers who had scoliosis, just like me. There were people with scars down their backs from spinal fusion therapy and athletes carrying a back brace around, and I had never seen anything like that. I began to realize that there is a greater community of scoliosis patients than I knew. Then, in sixth grade, I did a research project on Jenny Thompson, an Olympic swimmer, who has scoliosis, and wore a brace. This project helped me realize that scoliosis would not prevent me from achieving my goals, not just in the swimming world, but in life as a whole.
Finally, this past summer, I was allowed to go to two practices a day. It was exhausting, and I complained a lot, but deep down, I loved it. I would go to morning practice, wear my brace until afternoon practice, go to practice, and put on my brace before bed.
I have fallen in love with this sport - like I said, it’s addictive. My body has gotten used to the daily grind and the thrill of the cold water. I started swimming, as therapy, and I never would have guessed that swimming would be such a big part of my life. You don’t have to join a club team or practice a lot, or go to meets to swim. Swimming can be such a great way to adjust to having scoliosis - even if that means going to your community pool once every month, just to swim a couple laps. I could not speak highly enough of this sport and what it has helped me through. Whether you choose to swim, or pursue another sport, just remember, we’re bent, not broken! :)
I'm generally a happy person. Sure, I can be moody when I'm not in control of something - I ain't no saint - but I'm definitely optimistic (sometimes to a fault) most of the time. I have to admit, this next little article is not the most positive...as much as I know the importance of a good mentality, sometimes you need to be able to just express your feelings. I'm so lucky to have you all and know that I am not on this journey alone, but that being said, waiting for the past nine years has not been easy. Especially when, this summer, all of my friends went to the beach or the pool for the day, and I had to stay home or wear my brace and just sit on the sand. All of this aside, I still realize how lucky I am to know that I probably won't have to have surgery, and I understand that and am so grateful for it. The waiting time can just be kind of hard.
For the past two years, my doctor has said that at the next appointment, I will have stopped growing, and therefore would be able to tell if a) I would have to have surgery (which, at the time, it was likely that I wouldn’t) and b) I would be able to stop bracing. Since then, I have continued to wear the brace for 20+ hours a day, and some days, I'm not the happiest camper. As much as I recognize the importance of having a positive attitude, I know that sometimes, everyone needs to vent.
I’ve gone into the past 6 appointments hoping for good news, and come out disappointed. I was told when I was first diagnosed that I would be able to go to high school, brace free. But here I am, as a sophomore, still wearing the brace.
I feel guilty complaining about my situation. I know that I’m lucky in that I won’t have to have surgery and I’m nearing the finish line. The reason, that I’m sharing this story is to emphasize the importance of persistence. Despite my occasional, temporary frustrations, I know that I'll get through it and that I've sacrificed too much to give up now.
I’m sure that many of you have been in the same position that I’m in now, in that you’ve waited, whether its with a brace, or awaiting surgery, and it’s agonizing. But that is what is so great about our scoliosis community. What makes this wait the easiest for me is knowing that there are so many people who have been in the same position and that we are all together. Wherever you are in your journey, it’s important to remember, we’re bent, not broken! :)
Being a slave to wearing a brace everyday is something that I try to approach with positivity (I guess slave and positivity in the same sentence are a bit of a paradox...I guess I’m like a tree that just needs some support?) Names aside, yes, I wear a brace to treat my scoliosis. And while it wouldn’t necessarily be my top choice as far as mobility and comfort go, I could be worse off.
Now down to the logistics: I have, since I was seven, used a Boston Brace. My doctor recommended this particular brace for me because of its success and history. And, I didn’t realize until doing a little bit of research for this article, that the Boston Brace, created in the 1970s, is the most common brace for scoliosis today. I am no professional when it comes to braces, but basically, the Boston Brace is plastic and can have padding on the inside that is shaped to accommodate for your curve. Here is a link to a more detailed description of the Boston Brace. As with anything, though, some curves require different braces...I like to think of it as if we are all just uniquely shaped trees that need different bands and sticks to pull us in the right direction.
I consider myself lucky to have been diagnosed so early because I don’t know what life without the brace is like. It’s easier to live your entire life without something than to live with it, and lose it all. I don’t know what it’s like to spend an entire day at the beach or to go on roller coasters without my skin getting pinched in the little nooks and crannies of the brace. But for ever con of bracing, there’s a pro. Bracing has significantly corrected my curve, and (knock on wood) I probably won't have to undergo spinal fusion surgery. It’s very easy to remember all of the negative things in life, but, even in hard times, it’s important to remember, we’re bent, not broken! :).
Hello there! My name is Kate and I was diagnosed with scoliosis when I was 6 years old. Here’s my story.
When I was 6, my mom noticed that my shoulders were uneven. In fact, one of the sleeves of my shirt was always a little bit shorter than the other. So, when I visited my pediatrician, my mom asked her if one of my arms was longer than the other. The doctor took one look at my back and knew that I had scoliosis.
I was young when all this happened, so everything was a blur. However, I do remember loving my first x-ray. I had to wear a lot of protective gear and I stood in front of the machine, cheeks puffed from holding my breath, knowing that I would go to school the next day and brag about how cool it was.
An hour later, we found out that I had a 15 degree curve, which, while it was alarming for someone as young as I was, was just something to monitor, rather than treat. When I went back four short months later, my curve had progressed to 27 degrees - quite alarming for so little time. With that news, my parents and orthopedist decided that it would be best if I was braced right away. At the rate that my curve was growing, I would have to have surgery within the next few years, and being young and not done growing would put me at risk.
Surprisingly enough, I was very accepting of my brace. Despite the unwanted nicknames like “robot”, I loved my brace. I even convinced my friends that it was bulletproof and gave me exclusive powers.
Diagnoses can be scary. They usually consist of a bunch of mumbo jumbo and make it seem like our lives will be made worse by whatever we are diagnosed with. But scoliosis has had such a positive impact on my life, and like with anything, a positive attitude can make make a world of difference. That’s why it’s important to remember, we’re bent, not broken! :)