When I Had to Choose Between School and Finding a Diagnosis

My seven year-journey has finally come to a close. As of December 14th, 2017, I finally have a name for the disease that’s been slowly whittling my body to skin and bone. I received a 1 in 200,000 diagnosis. I made someone’s career and became one of the thousands of zebras in the world. I know a label shouldn’t mean much – but a diagnosis of the disease that robbed me of my childhood and adolescence, means the world. For this zebra, it opened the door to clinical trials and hope. I may have the incredible opportunity to live again.

In late August, I began my first semester of college at Brandeis University. In my class, I’m one of two students with cerebral palsy, on a campus built on a hill. It’s a truly wonderful place — the first one where I feel I’ve ever belonged. Academically, I’m performing well, which seems like an impossible feat, considering I missed over a third of my first semester to medical testing and hospitalization. I shouldn’t have passed my courses. I’m fortunate to have worked with kind and empathetic professors. I know many aren’t as lucky. I know that a B+ average wouldn’t be impressive to most in my milieu, but I’ve learned excellence can only be measured in context. I’ve accepted that, considering my circumstances, B’s were unlikely, at best. I missed over a month of school, and most students are advised to withdraw after two weeks. Somehow, I still thrived.

Currently, I’m in the process of receiving my final grades, and I’m kicking myself for not going on leave. I could’ve been a straight-A student if I were well, but the flares I had at Brandeis were the worst I’ve ever endured, so B’s will suffice. I will learn to be proud of my B’s one day, and maybe I’ll look back on these last few weeks and laugh. Yet, with every mark that goes up, I’m regretting my decision to stay. Yet, I know if I had left, I would have never received the diagnosis I so desperately needed. It’s a double-edged sword. If I had left, I wouldn’t be dealing with the grades I have now, but I wouldn’t have the answer I’ve been needing since I was 12 years old. My entire future would still be closed off, and I would still be condemned to a life of testing. Now, I’m heading into the new year with a future, and a treatment plan in hand. The unknown has vanished. I am a lucky zebra.

To those of you entering the new year or the new semester still searching for a name, it’s out there. I’ve spent over a third of my life fighting. I know it’s frustrating, but it’s out there. Maybe not this year, maybe not the next, but there is a name. Keep fighting. I will continue to do so until the day I take my last breath. That’s what zebras have in common. Our battles don’t end, but we figure out a way to still make our lives meaningful while living in what feels like a warzone. My grades and my body are my casualties, but I will win this fight. Winning this battle, to me, doesn’t mean defeating this disease. It is simply learning to live the best life possible with it. Much like I am with my academic career, I am standing at a precipice. Myself, along with many other new zebras, are only at the beginning, so let’s win back our lives.

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