Chronically Yours: In memory of

In the second installment of her column, Noa Karidi writes about the fluctuating conditions she lives through as someone with a dynamic disability, and how being “okay” looks different every day.

In memory of the girl who loved rock climbing but never got to climb that one wall that needed her to be taller than 4’2”. In memory of the girl who woke up early to do her hair in a ballerina bun each day, managing the hip length waves. In memory of the girl who would run across the soccer field to meet her best friend on the far end, just to talk. In memory of the girl who thought doctor appointments were just an annual thing. In memory of the girl who thought pain was a scraped knee. 

She died with the diagnosis.

Really, she died three years before the diagnosis. When pencils became too hard to hold and she watched her friends run ahead as she limped behind, alone. When the ballet flats in her closet became two sizes too small and next to them sat a box full of braces and casts. 

The diagnosis was the doctor calling time. It was the casket closing on that part of her life. One girl entered and another girl left the room with a list of medications in her hand reflecting the limitations on her body. 

This new girl started dying at the first allergic reaction. When the only medication that seemed to do something was put on the ‘do not prescribe’ list. Five medications later, it looked like she was going to die too, and the hope that kept her going through constant flares was slowly being drowned in pain. Then came the least likely option. The one that didn’t fit her diagnosis but still had potential. It worked. The diagnosis died and was reborn, renamed, but the girl lived. 

She lived with stairs and hand-written equations across less notebooks than before but still a notebook. She still carried the diagnosis and her joints were scarred with each death, but she learned to live. 

Then came the second diagnosis. This one killed her slowly. Unlike the previous, which came with reassurances and knowledge that the pain had a name, this one came before the pain itself. It came with minor symptoms and a belief that everything was okay. 

There is a saying: if you put a frog in water and slowly bring it to boil, the frog will not realize it is being killed until it is too late. This is false. Frogs are smarter than that. Humans are not. 

It took her a while to realize that something was wrong, but by that point she was missing school and needed hours to recuperate from the days she went. She knew what was wrong because the diagnosis came first but at first there was no need for treatment and she hadn’t noticed until it became too bad. It was a long, slow year of dying until she realized something was broken. 

The girl who walked through the balloon archway for NSO knew of her diagnoses. One was in remission, under control, flaring with seasonal changes and illness, but manageable. The other was becoming familiar, the monster under the bed could be convinced to stay in the shadows. It took trial and error before it stopped biting her feet, but she learned. 

She learned how to keep living. But if you look closely when she passes you can see the ghosts of each part of her that died, holding tight. Haunting her with their memories. 

This piece of prose represents my story living with the grief of becoming disabled. This is a story that many people share. Losing abilities and being unable to experience life as you once did is a heartbreaking process that involves mourning every past version of yourself. As your life changes and your disability changes, you have to constantly adapt while you mourn more and more pieces of who you once were. I hope that my writing allows those who have experienced this grief to feel seen and those who have not to better understand the loss I and many others experience. 

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