- During my childhood, I frequently visited the hospital due to hereditary multiple exostoses.
- At the age of 19, I made the decision to stop going to the hospital. Although I was not okay, I wanted to embrace and live with my condition.
- However, at 23, I returned to the hospital still experiencing pain. It was then that I realized the bravery I possessed as a child.
As a teenager, I experienced a series of electric shocks while lying in a hospital bed. These shocks were administered to test my sensitivity to pain. Despite the discomfort, I maintained a brave face and reassured my sobbing mother that everything was fine.
Hospital visits were a regular occurrence for me, as I was born with hereditary multiple exostoses (HME), a rare condition characterized by extra bone growths. My legs were particularly affected, making it difficult for me to walk. Thus, I spent a significant portion of my childhood in hospitals.
I became intimately familiar with the hospital environment and formed lasting relationships with the staff, whom I had known since the age of seven. Endless appointments filled my days, consisting of physiotherapy, MRI scans, CT scans, and various pain management techniques. While these methods provided some relief, they did not provide a cure for my condition.
Sama Ansari Pour.
Treatment for HME often involves surgically removing painful or uncomfortable growths that inhibit movement. Johns Hopkins Medicine also suggests hemiepiphysiodesis, a growth-plate surgery for children that corrects misalignment in future growth. At the age of 14, I underwent this procedure, which involved the placement of plates on my ankles to align my feet as I grew older.
Transitioning from hospital visits to independent living
Upon entering college, I made the conscious decision to put a pause on hospital appointments. I wanted to embrace and adapt to living with my condition without the constant medical visits.
Initially, the freedom from hospital visits was liberating. I enjoyed the additional free time. However, the physical pain persisted. My lack of coordination and frequent bouts of bedridden agony often prevented me from participating in social activities.
After completing college, I moved back home and decided it was time to confront my health issues once again. At the age of 23, I returned to the hospital.
The experience of returning to the hospital as an adult
Returning to the hospital as an adult was a starkly different experience. The hospital environment, once familiar and comforting, now felt oppressive and intimidating.
During my first visit in years, the doctor examined my legs and promptly ordered two X-rays. The news of a confirmed problem filled me with dread. The X-rays revealed that one of my extra bones had become more prominent, further hindering my mobility.
As I reluctantly donned a hospital robe, tears streamed down my face. Avoiding regular hospital visits had temporarily tricked my mind into thinking I was fine. However, the mirror reminded me of the truth – I was still unwell. The realization struck me with painful disbelief at the age of 23.
Thus, the cycle of hospital appointments resumed. Every three weeks, I undergo MRI scans and CT scans to monitor the state of my bones.
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