First, let me address the elephant in the room: I know I have not posted a blog on WFJ in almost a year and I apologize! I have actually been writing this piece since February, in the hopes I would post it during June, Scoliosis Awareness Month, but I wasn't ready to post it yet. Now, the second elephant in the room: Yes I have a physical disability. Well, technically it is recognized as a "condition" or a "disorder," but my condition has affected by daily activities, which can be considered a physical disability.
I hope that by sharing my personal experience with my disability/disorder can reduce the stigma of disabilities and disorders by encouraging others to share their story as well. For those of you who either did not know me until college or do not know me in general, I have suffered from severe scoliosis since I was in the sixth grade. Scoliosis, as defined by SPINE-health is described as a condition that is "an abnormal curvature of the spine."
At the young age of 11-years-old, I was diagnosed with a large, 45 degree thoracic curve of my spine, and my life was changed forever. As a competitive dancer, I worried this would affect my dancing ability, which later on, unfortunately did. My parents were frightened and worried, and so was I. We went to two orthopedic surgeons who specialize in scoliosis at Children's Hospital Los Angeles and at Kaiser Permanente, and both recommended surgery, which was out of the question at the time. Dr. William Weiser, an orthopedic surgeon at Kaiser Downey, suggested another option that he thought might have a chance before we seriously thought about the surgery. Since I was not finished growing, Dr. Weiser recommended that I wear a back brace for a couple of years until I stopped growing to see if that would help shrink my curve. We took him up on his offer and there I was, an awkward middle-schooler, wearing a bulky, uncomfortable back brace. It looked something like this:
I wore this brace up until the end of my freshman year in high school, and it greatly attributed to the most humiliating years of my life. I had to wear the brace for 22 hours a day, meaning the only time I could take it off was at dance. The brace ripped most of my clothes, chaffed my skin frequently, and was extremely uncomfortable. Don't even get me started about what it was like to wear this thing during the summer... When Dr. Weiser told me my curve decreased to 32 degrees, my family was ecstatic and I thought my troubles were over. I had to see Dr. Weiser every six months for X-rays, but I thanked God for healing me and allowing me to avoid the spinal fusion surgery.
To my dismay, my scoliosis journey took another turn for the worst. During my routine check up, sixth months after I stopped wearing the brace, my curve was back to 48 degrees. I was devastated. I did not take this news well and neither did my family. Now at 15-years-old, my parents felt I was still too young to have an invasive surgery, but I knew I had to start preparing myself for the spinal fusion surgery. A spinal fusion for scoliosis has various aspects to it. 1. It involves inserting two titanium rods and screws to align the spine. 2. Straightening the spine with a tool/device that I don't really want to know about. 3. Bone graft is then placed into the spaces between the vertebrae to fuse the spine (the full recovery from this takes 1 year). Clearly, this surgery would be major and I truly felt unprepared for it mentally. Family members and friends sent me notes of encouragement and my mom kept buying me books about scoliosis and other people's "journeys." Understandably, I cried and cried reading all the books and blog posts, but I knew I had to face reality. Knowing that the only other option besides surgery was to wait until the curve punctured my lungs and overcame me, I finally decided to agree to the surgery. I was proud to have made this decision because I was putting my health first. At the end of my sophomore year in high school, my surgery date was set for August 5, 2013.
After having an amazing summer with vacations in both France and Hawaii, I prepared for my "life-changing event." On August 5, 2013, I entered my spinal fusion surgery with a curve of 50 degrees and I came out five hours later with two rods and 22 screws in my spine. Most of my spine was now straight, leaving my curve at 15 degrees! Unfortunately, scoliosis is not curable, but it sure is treatable. My recovery was truly amazing and I cannot thank Dr. Wesier and Kaiser enough for continuous great services and treatment throughout my stay at the hospital. I could never be prepared for the changes that occurred in my body, but I had a large support group that kept me going. My family was there with never-ending support, my entire high school knew about my surgery, my friends visited me while I was in the hospital and when I was recovering at home, and my dance teachers who helped me learn how to dance with my new spine. Things were definitely harder, in fact I had to re-learn how to walk before I could be discharged from the hospital. Surprisingly enough, the surgery increased my height by two inches, which is a lot to grow overnight... There were many tears during my year long recovery, but I am glad that I faced this challenge in my life. This event helped me grow in ways I could not even imagine.
Fast forward almost five years now, I wear my 12-inch scar with pride, but I still deal with scoliosis even though I thought my tough days were over. Every day I have constant pain in my right shoulder and my neck because my body is still overwhelmed by the massive change it endured five years ago. The one thing I wish I read in the scoliosis books and blogs I read was what I would endure years after my surgery. I am not sure if other people who have had a spinal fusion have the same pain I do, but it sure does suck. I have to see the chiropractor for the rest of my life to escape the pain for a day or two, but it always comes crawling back. I have also started many treatments including Physical Therapy, Medical Massages, and Acupuncture to hopefully relieve the pain forever, but who knows what my future holds. Although I am still upset that I will forever be impaired and deformed, my scoliosis journey has made me a stronger women and that is why I want to continue to share my story to bring more awareness to scoliosis. I enjoy hearing from young girls with scoliosis who have questions about my scoliosis journey and I also love educating those without scoliosis about what it is like to live with the disorder.
Earlier this year I came across the StraightForward Foundation's Instagram page, and I was immediately inspired by the work they have done to empower and celebrate the stories of people affected by scoliosis. The nonprofit organization works with many celebrities with scoliosis including Victoria Secret Models, Martha Hunt and Lindsay Ellington, and dancer, Paige Fraser, and more, to empower those affected through fashion and art. When I started my scoliosis journey, I wish I knew celebrities like Martha Hunt and Paige Fraser have scoliosis as well. I think that it is amazing that young people with scoliosis can now look up to them and have hope that it will all be ok. I am excited to also say that I will be attending the Los Angeles #IAMSTRAIGHTFORWARD Opening Night Party + Exhibition tomorrow hosted by the StraightForward Foundation and the Scoliosis Research Society. The exhibition is intended to "highlight and display the beauty of scoliosis through timeless photographs of influential advocates." The exhibition will also be open to the public from 7/11/18 - 7/14/18 from 11 am - 6 pm in Downtown Los Angeles. I encourage anyone interested in learning more and supporting scoliosis research to check it out! The StraightForward Foundation is an organization I want to be a part of and I hope that someday I can start my own organization to empower young adolescents with scoliosis to continue to do what they love and learn to love their bodies no matter the twists and turns it may have.
If you have any specific questions about my scoliosis journey feel free to contact me through the Contact page!
If you want more information about the StraightForward Foundation or the Scoliosis Research Society please click the links below:
Wishing you all the best!
Creator of World Fashion Journal