Editor’s note: Occasionally, we invite young adults to write first-person account essays of their experiences. We hope their reflections shed light on certain circumstances so that parents gain insight as they care for their own families.
My journey to surgery began with a routine visit to the orthopedist for a referral to the wheelchair clinic. I needed an adjustment to the chest lateral—it was causing a sore spot under my arm. I have used a wheelchair since I was five years old, so I was used to the insurance process, which forced a doctor’s visit before seeing the therapist who actually knew what I needed. The orthopedist ordered the usual X-rays, and my parents and I arrived in his office expecting a conversation about my latest successes in college and what I was planning for winter break. We were not expecting to hear that I needed spinal fusion surgery.
I shouldn’t have been surprised, since I knew that I had scoliosis related to my diagnosis, FOXG1 syndrome. It is a genetic disorder characterized by physical disability, feeding difficulties, sleep disturbances, seizures, and a lack of speech. I use my torso to push buttons that allow me to communicate, including writing this article. The device is Tell Us Abey—a communication system my parents designed and built for me.
I use my torso to push buttons that allow me to communicate, including writing this article.
People with neuromuscular scoliosis are more likely to progress to the point where they need surgery, but I didn’t think it would happen to me. Feeling sure that a body that could excel at Columbia University and write articles, all using my torso, would not benefit from stainless steel rods in my spine, I said no to Dr. Roye. He would change my mind in time, but at that moment, I was sure they made a mistake.
My Body, My Choice
A week later, I was back at Columbia Presbyterian, meeting with the surgical team. My parents have given me control over medical decisions since I was a teenager. They say it is my body, my choice, but they insist I make an informed decision. Dr. Roye showed me my X-rays, and I could see that the curve was more exaggerated. He talked about pain and pneumonia. I explained that I had no pain and my lungs were strong and healthy. He listened.
I needed to know why he thought a healthy person should risk surgery.
I needed to know why he thought a healthy person should risk surgery. The answer was gravity. Over time, the curve would worsen, compressing the space for my heart and left lung. This could impact my health as I aged and could shorten my life. While I didn’t like it, I could see he made sense. I took two more weeks to think things over, but I eventually agreed.
We scheduled the surgery for the first week of June, after finals, leaving plenty of time to heal before the fall semester. I put it out of my mind and lived my fabulous life.
When I moved home for the summer, I found that the artwork on the north wall of the living room was replaced with a whiteboard with a calendar leading up to my surgery. It had a combination of doctors’ appointments and fun events that my parents had planned.
I could see they were trying to distract me with baseball and ballet, movies, and museums. The three hours a day I planned to spend in intensive therapy leading up to the surgery was notably missing. I looked at it, and I knew making a schedule was my father’s way of coping with a situation he could not control. The month went by quickly, and I enjoyed seeing every new release and the hottest exhibits in New York. I watched the Mets almost win. I went hiking and saw Laser Floyd. I did it all in that month packed full of fun.
Surgery Day
On June 6th, I went to the hospital. The surgery required taking small pieces of donor bone and wedging them between my vertebrae to remove the curve in my spine. Then they held it all in place with rods and screws. You might think that sounds painful, but the pain that came was from the muscles they cut and sewed to reach my spine. I was prepared to stay until I could stand up to use my communication device––though I use my torso, I need to be in a standing position. The team had said my legs would not be affected, so I wasn’t worried.
The problem was that they were wrong. That was the hardest part of my recovery. Without standing, I couldn’t communicate reliably. This made pain management a guessing game with my parents, who tried desperately to interpret my facial expressions and unhappy sounds. I have been using my device to communicate since I was five, but then I was locked in. It was frightening to have no way to express my needs. That was worse than the pain, which was well-controlled.
It was frightening to have no way to express my needs. It was worse than the pain.
I spent a week in the hospital, including four days in the PICU. It was kind of a blur, but I remember my mom setting goals geared toward reasons we could leave the hospital. Each day, she told the nurses, doctors, and therapists that “this was the day” I would stand or pass stool or do something on the checklist. I met the goals, except for standing, but it was enough for the doctors to clear me, so I went home.
Back in My Own Bed
The first week, I slept on a rented hospital bed in the living room. It was good for turning me onto my side—the plastic surgeon did not want me to lie on my back overnight. It was good for nothing else. Finally, I returned to my bed and my mom returned to hers, and we both slept through the night.
Sleep is essential for healing, and I thought I would continue to improve. Instead, I developed involuntary movements known as clonus. My legs shook uncontrollably. I could not stand at all. So, we shifted approaches. I spent four to five hours a day in my stander—a disability device that holds me in an upright position—and I used a modified communication method, sitting on my mom’s lap instead of standing, to lean my torso forward. My mom got so frustrated and worried that she made me crazy. It was a rough time for us all, but I kept thinking of the doctor saying recovery would be four to six weeks.
At the end of week three, I started to stand a little, and in week five, I was writing again! It was slower than my usual four hundred words a day, but I could see the path back. The process of writing was difficult because my legs sometimes collapsed in the middle of a sentence. It was challenging but not impossible.
What to Know about Recovery
Recovery included skipping bathing for three weeks. I had “drains,” which meant I had a tube inside the surgical site that was connected to a soft bulb that collected fluid. I also skipped shaving for a while and grew a goatee that I would not have tried otherwise. I missed taking baths, but the beard is here to stay.
During my recovery, changing positions was important to keep me comfortable. It was also important to move to promote circulation for healing. When I was being transferred, it was uncomfortable, so it could have been confusing for my parents and caregivers, since I only communicate when I’m standing. The noises I made might have made it tempting not to move me. But each time, the new position felt better, once I settled in. Luckily, my mom and my aides paid attention to my facial expressions after positioning, so they knew to keep moving me.
During my recovery, I was hyper-aware of my vulnerability.
During my recovery, I was hyper-aware of my vulnerability. I typically think of myself as strong and healthy. I know I am disabled, but using the “social model,” my world is well designed to accommodate my needs. This philosophy views disability as an environmental problem that can be solved with ramps, text-to-speech, and a flexible deadline. The “medical model” is a vision of disability as a disease, a defect, something to be fixed that is broken, rather than something different, and part of the human spectrum. I was not broken, but sitting in my chair tormented by spasms, I sure felt that way. This surgery supported that model in a way I tried to ignore in my daily life.
Recovery took longer than I expected, and it was more of an upward spiral than a smooth line. I never doubted the doctor, and I know how to be patient. So, I waited. Seven weeks after surgery, I was back to my routine. My strength returned, and I worked on rebuilding my stamina. I slept comfortably in my bed and rarely used ibuprofen for pain. The only lingering issue was my need to switch positions. Before the surgery, I was happy to sit in my wheelchair for hours while visiting a museum or watching a movie. Afterwards, I needed to switch to my stander or the couch, so I didn’t get tightness in my back muscles. At that point, surgery seemed like a success. Then, over the course of a week, I slowly lost the ability to stand.
Standing is critical for me, so that I can communicate. I was registered for Fall classes that began the day after Labor Day, which was just around the corner. My mom went into emergency mode, taking a two-pronged approach. She sent me to the orthotist for leg braces so I could stand even if my legs didn’t cooperate. She developed an exercise and stretching regimen for an hour before I went to bed, seven days a week. That was part one. Part two was looking for the cause of my regression. I got blood tests, x-rays, and an MRI. They revealed nothing to explain why I’d lost the ability to stand. In mid-September, after school began, I saw a physical therapist with the answer. She explained that eight-to-ten weeks after spinal fusion surgery, people’s bodies “settle.” I would need more time to strengthen my muscles to regain my ability to stand consistently, but she assured me I would. She adjusted my nightly routine, and we left her office relieved that I would be OK, but wishing we had known this was part of recovery.
Finally Standing
By October, I was able to stand for a full minute without braces. By November, I could have twenty-minute conversations. Twenty minutes became thirty, and by February, I had completely recovered.
I continued to stretch at bedtime, but we reduced the routine to forty-five minutes, and I occasionally skipped a night. My back is less flexible, but my posture is great.
I am ready to live to a hundred!
