My experience with Hospital for Special Surgery began when I was just a few years old, but I really did not understand how much this hospital and its amazing staff would change my life until I was fifteen years old.
I was born with cerebral palsy (CP), but I received the official diagnosis of spastic hemiplegic CP on the left side of my body from my pediatrician and my neurologist when I was about eighteen months old. Like the majority of CP babies, my life soon became flooded with early intervention occupational and physical therapy appointments, and orthopedic specialists' appointments. HSS was one of the first hospitals I became a patient at. I first met Dr. Michelle Carlson in the late '90s, who worked with me as a consulting physician for my left arm. 9 out of 10 doctors I have seen from all over the country advised my parents to hold off on any surgery for me until I was older and fully grown. HSS physicians were among the experienced experts who advised that I not have surgery for the left side of my body at such a young age. HSS physicians advised intensive OT and PT, and I was also very active in sports such as soccer, tennis, softball, basketball, dance, and gymnastics when I was young. Waiting until I was fully grown before having surgery was honestly the best decision for me and I know that HSS physicians really have all of their patients' best interests at heart.
I was fifteen years old and in high school when I walked back through the doors of HSS as a patient. I won't lie to anyone who asks me what it is like to grow up with a disability like CP. High school was an incredibly difficult transition for me. The slightest difference in myself compared to my peers made me subject to teasing and scrutiny. I did not really understand why, because even though I knew I had a disability, I grew up doing such "normal" activities and nobody had ever negatively pointed out my disability to me before. I honestly remember feeling so confused and trapped in my body and I wanted everything to change. I reread all of my medical files a million times to figure out if anything could be done to improve the tightness in my arm, and the way that I walked.
I presented my case for wanting surgery to my family after educating myself on procedures commonly done to improve ranges of motion for people with cerebral palsy, and I was set on having my surgeries at the #1 ranked orthopedic hospital in the nation. My father got in contact with Dr. Carlson after so many years and we soon had an appointment at the CHARM Center. I found out at the CHArm center after all of my preliminary analytic studies that I was a perfect candidate for tendon transfer surgery in my elbow, wrist, and thumb, which dramatically decreased the tightness of my entire arm and now allows me to carry weighted objects in my left hand without thinking twice about it. Dr. Carlson was one of the first people who treated me maturely like I was an adult, although I was only fifteen at the time of consult. I cannot fully express how important this was to me, and still is to this day. Dr. Carlson made sure I understood every decision that was being made with my body, instead of just talking to my parents about me. Having a disability makes you grow up faster in certain aspects because you are introduced to more perceived difficulties at a young age, and you realize not everything is supposed to be easy, but that is okay. My arm surgery took place on January 20, 2011 and I am so grateful for all that Dr. Michelle G. Carlson has done for me.
A few months before my arm surgery took place, Dr. Carlson introduced me to her colleague Dr. David M. Scher. Dr. Scher specializes in lower extremity deformities and disabilities like cerebral palsy. I will never run out of good things to say about Dr. Scher. I knew that my leg would require a little more work done than just tendon transfers, and Dr. Scher made sure I understood everything that was happening as well. I had tendon transfers completely in my calf and left foot, and my left ankle also had to be surgically broken and repositioned because I used to walk inverted and on the side of my foot. Since surgery, I no longer do that; my foot is straight and I walk with less pain and I am incredibly grateful for Dr. Scher's professionalism and compassion. My leg surgery took place on June 28, 2011 when I was sixteen years old.
I am a 21 year old college student now, and I am studying to become a pediatric physical therapist. I want to use my story to help others motivate themselves to push past their perceived limitations. I am also a certified spinning (stationary biking) instructor. being able to confidently be in front of others and lead them to completion of a spinning routine is one of the best feelings. I do not think this would have been possible without HSS.
Thank you HSS for giving me confidence in myself and in my disability. Thank you to everyone who got me where I am today to realize I am not ashamed of my body and my circumstances, and I would not want to change having cerebral palsy.