The Harsh Realities of Long-Term Illness


Facing chronic illness can change the way you see the world. It can also change the way the world sees you and how you interact with it.

As a PhD candidate and an aspiring scholar, I fight hard to find adequate spaces through which to explore my research and expand my mind. I search for conferences that carry the unique ideology that guides my thinking forward and I work hard on applications that eventually get me accepted to present and participate in exchanges of ideas with other scholars and aspiring scholars from around the world.

I haven’t been able to go to a lot of these since I have been “sick.” Though most days I don’t consider myself a sick person, rather a person who just lives in different circumstances than most folks, the language of diagnosis and illness is always just an arm's length away. Every time I normalize my condition and begin to aspire towards things I see my peers aspiring towards, I seem to find my ambition come to a grinding halt. It happened over the summer and despite it, I let my optimism get the better of me. I couldn’t attend this summer, I thought to myself, so I will find another opportunity, in the winter. I will heal, I will go, I will inspire and be inspired.

And I did find another opportunity and I worked tirelessly on a proposal that so clearly articulated what I hope to share with the academic world. I was accepted and all set to go, to an amazing conference, in an amazing place. I was ready to pack my bags and head to Australia.

Until I wasn’t.

There’s been this nagging issue since my third brain surgery in January of this year. My spinal fluid cannot seem to stay in the areas it was meant and finds its way out of my nose at what are generally very inconvenient times. Though, I can’t say I can think of a time of day when I would really want my spinal fluid to slowly seep out of my nose. The doctors tried to fix it in January, but the repair failed. So they tried again a week later, but the repair failed. They went back in May, thinking time may have changed the circumstances of the leak, but the repair failed. They came up with a new approach, went back in June, but the repair failed.

After ten days in the hospital in June, despite my protestations, the doctors sent me home. I insisted to them that the leak was not fixed. After many months of me fighting to make myself legible to the medical professionals and the medical system overall, I finally got my doctors to stop dismissing me on conjecture and to run some concrete tests. The tests were invasive and scary; they came with lumbar punctures, IVs and a note to take home in case the gamma rays they filled you with set off any alarms. The test confirmed my self-diagnosis. I do indeed still have a spinal fluid leak. Sometimes naming the things you already know to be true can change the way you know them or see them. I knew that I had this condition and whether it is this or something else, I know the marker of being a brain tumor patient is not one that goes away. I knew that the only way to fix this would be surgery of some kind — none of this was surprising on a rational level. The suffering, though, changes you and the lessons influence the way you see the world. There will always be a twitch in my neck where the scar ends and a ringing in my ear where my hearing used to be. The circumstance of my life is inescapable, and something I wouldn’t want to escape because it is so firmly a part of who I am. That said, hearing the news, seeing it in black and white, makes that gnawing feeling in your stomach amplify itself and tear into you.

The experience of illness changes you. I know that life is not measured in the miles we travel or the adventures we seek. For me, especially after various life events that changed the plan I had thought I always wanted, life itself is the adventure. Awaking each day with the sun and finding solace and comfort in the love around you, that is what is beautiful about life. I know life is not measured in cliffs we dive off of or the mountains we climb. I know that life is about how truly and unconditionally we love and how genuinely we engage in each of our precious moments. I know that. I see it, I feel that in my bones. I know firmly that even if I never travelled another mile, my life would be the adventure, my interactions would be pure and true, my life would be one lived with honesty and vulnerability.

It just is hard sometimes.

I’ve had this monumental moment in life that has shifted so profoundly the way I see life and love and living but the world around me, it hasn’t gotten to see and feel and suffer through so much life that each moment is recognized in all of its magnificence. The world implores me to see more of it. People urge me to dream of bigger and better adventures. More is more and more is better.

So though I know better, though I know my career will wait for me and my present is my adventure, I can’t help but feel disappointed. It felt nice for a moment to inhabit the body I used to live in, the body that was fueled by wanderlust. It felt nice to perform normalcy in the way I see it presented around me. But wouldn’t it be so beautiful if — even for a moment — we, the people in the sick bodies, didn’t feel that our bodies had to conform to what the world wanted? Wouldn’t it be nice if the world saw our everyday adventures not as adversity but as ingrained into the human experience, as beautiful in all of their complexity?

I wanted to be seen in my illness, I wanted to be honored as self-reflexive and intuitive in my body. I finally am and yet in a world that doesn’t see me how I see myself, the results don’t feel all that satisfying.

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