I'm Alive. So Now What?







I used to cry whenever I went to the doctor, an admittance that sounds dramatic until I think about all of the times that whether or not I would retain my ability to walk, go to school, and even live were called into question on the exam table. After each appointment, I would get back in the car, sobs making my speech sound like a muffled telephone call, and promise myself that if I ever got better from my mysterious, rare disease, my life would be cool enough to eventually make into a bad Lifetime movie.

It gave me as much of a shock as it gave my doctors when after some of the most unconventional treatments known to man, including high-dose Ketamine infusions and a rib removal, I achieved what could only be described as stability. My young self had many ambitions, and at eighteen, I wanted to achieve each one of them. I decided that what I wanted to do the most was to see the world. With a sense of childlike hopefulness that could only be obtained by watching one too many travel documentaries, I set out to begin my grand adventure by going to college in Scotland. I was convinced that the transition from full-time patient to independent adult would be seamless.

While settling into my new home, I tried hard to avoid things that reminded me of the hospital. I even went as far as to decorate the entirety of my new room with prints of famous paintings and pictures hand drawn by friends to avoid white walls. My bedside drawers had to hold the essentials: pill bottles and a list of signs and symptoms of an aneurysm, but I attempted to cover these objects with the safe-sex pamphlets the NHS gave me upon registering for health services. You’d think that a leaflet reading “so you think you have chlamydia?” would be worse than medical supplies, but to me, it felt like a step up in the world…or at least a convenient distraction from the thought of internally bleeding.

I did these things because I wanted desperately to stop thinking about what was. I suffered from an acute lack of ownership over myself and my story. Years of treatments that required my complete cooperation, including some interventions that left me incapacitated and unable to communicate, gave me the feeling that no matter how hard I tried to hold on to control, someone else would eventually dictate what happened to my body. Despite being told by a few less-than-convincing foreign boys to ‘try harder to forget about it,’ the gnawing, lack of autonomy felt stuck. I thought it was only a matter of time before I was back in America, inpatient at a specialty hospital.

I often felt as if I existed in two distinct universes: in one, I had survived the most terrifying unknown; in the other, I was simply a confused university student with a passion for cider and late-night walks. Far away from home, I could create the narrative that I wanted to. My new friends never had the misfortune of coming over to find filled sharps containers and bandages lining my countertops; they saw only what I wanted them to seepostcards of powerful women and half empty wine bottles. I created a reality in which I ignored the possibility of my mystery illness coming back to finish me off, yet I still felt vulnerable. At the end of the night, I would be afraid of what my body could do to me again.

It was while home for Christmas that I realized it was important to face things from my past. My hematologist decided that it would be a good idea to get two more iron infusions for anemia, and although minor, it felt like more of a blow than the time a metal bar fell on me after I tried surfing in the North Sea. While abroad, I learned to masterfully avoid the raw, gritty details of my situation. This sudden push back into reality felt like it was another sign from the universe that I should have been a better person, or started a charity, or done just about anything other than running away to a country full of flat parties and legal drinking. I felt betrayed by my body again, and because my undiagnosed illness didn’t have a name to direct my frustration at, I turned that hatred onto myself.

The night before my first infusion, I fell back into old habits, this time trying to ignore what was ahead by interviewing and photographing a singer with the charisma of David Bowie and the eyeshadow I would expect of Pat Benatar’s long lost son. Even there, caught up in the glamour of rising stars and soundchecks, I found my thoughts elsewhere. I would have given anything to appear as ethereal and untouchable as he did, but instead the entire show I was contemplating going to cry in an IHOP parking lot. That night I had achieved every goal I set out for myself, from world traveler to rock writer, and I still wanted to run back to Scotland. Across the ocean, there were no authority figures and doctors that could sit me back in the infusion center with one bad blood result. It was in that moment that I came to the realization that I had to radically change the way that I viewed my body.

The next day, tied to a intravenous drip the color of Merlot, I sorted through my epiphany.

In a moment of clarity, attributed equally to my personal awakening and an Injectafer-driven headrush, I found some acceptance in the fact that I had an IV in my arm and I likely would again. Many times. I vowed to be more honest, to tell people how I really feel and to stop forcing myself to be ‘over it’ already. I could learn to trust my body again, just as I relearned to fasten the buttons on my shirts or take walks without my cane. Rushing this trust, however, seemed to only lead to moments of pretend acceptance. I had to be real and love myself in an, unconditional, healthy-or-sick-it-doesn’t-matter, kind of way. 

My body has found ways to survive occurrences that cannot be explained. I can’t keep denying how spectacular that is.


By Emily Muller

2 comments

  1. I'm so impressed by your writing and so glad I clicked on this to find out. Of course I can't really related to this, but I feel that even though it's short and simple, it has the power to express so many conflicting emotions in a mature manner!

    Please keep this up!!! You're great :)

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  2. Wow...both the photos and the writing have blown me away. Thanks for sharing

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