The first thing that comes to mind when I think of Minnesota is corn. Lots of it. Like, you are literally surrounded by corn. The second thing that comes to mind when I think of Minnesota is diagnosis. My mother and I ventured to the Midwest for one reason. Answers.
Freshman year of high school. Track practice. Mundane fall from hurdles. Major knee injury. I thought nothing of it. However, over the next few months, I began experiencing constant joint dislocations. Growing up, I got sick a bit more than the average kid. I had asthma so severe that I couldn’t go outside. I threw up often. However, all of these weird symptoms were taken with a grain of salt. I was healthy enough. I looked like, and for all intents and purposes was, a normal kid.
By sophomore year, I was constantly fatigued and besieged by joint pain. Few friends and family were aware of the monster that was eating away at me. By junior year, my grades weren’t as “perfect” as I wanted. Filled with doubt, I viewed myself as a hypochondriac, seeking explanations for problems that didn’t exist. After dozens of specialists, my primary care physician recommended I visit the Mayo Clinic. And that is how my mother and I ended up surrounded by corn. It was there that I received the diagnosis of Ehlers-Danlos Syndrome. There was no cure, but I had answers. I shoved my diagnosis deep into my back pocket, and life went on.
The first thing that comes to mind when I think of college is discovery. There was not much struggle my first year. Sure, transitioning was tough, but I was able to keep pace with all the other awkward, lanky college kids my first year just fine. I participated in every club I could lay my curious hands on, and I took in every experience I could.
The first thing that came to mind when I thought of my body was burden. Things drastically changed my second year. My disease progressed. September. Numbness and tingling. Pain. Difficulty walking. Despite my prior diagnosis, a neurologist dismissed it as stress. Stress doesn’t make you wake up one morning paralyzed. I was rushed to the hospital and diagnosed with three ruptured discs. The cause? Existing.
The first thing that came to mind when I thought of hair was falling out. Over the next few months, I would be hospitalized again, and again, and again. Tachycardia exceeding 200 beats per minute. Mast cells attacking my spinal cord and organs. Lung collapsing. Gastrointestinal tract failing. And most importantly, most visibly, my hair began falling out from medication and malnourishment.
The first thing that came to mind when I thought of friends was hiding. Yeah, my friends knew I was sick. I snap-chatted every time I was in the hospital. I held awareness events. As a Genetics major, I viewed myself as a great source of awareness. But I still hid.
Comparison. Comparison. Comparison.
I was constantly comparing myself, treating EDS as though it was a curse. I hated myself. I hated my disease. Everyone had internships. Everyone could drive. Everyone could drive to internships. Where was I? Stuck.
The first thing that comes to mind when I think about coincidence is fate. I’ve been working for the Center for Integrative Proteomics Research since my first year of college. My lab studied collagen, my favorite protein. Everyone should have a favorite protein. The same spring I cut my long, beautiful, thick dark hair, I was offered a position in research. The topic? Vascular Ehlers-Danlos Syndrome. I was floored. I was given a position researching the same disease that held me back. My goal was to understand it, to fuel my hatred.
I bet you all hate EDS as much as I do after all of that.
The first thing that comes to mind when I think about pain is love. As I began researching, I slowly fell in love with the disease that had given me so much pain. I spoke with a coworker for tips on balancing appointments and life, and he recommended that I become an MD/PhD because of the knowledge I was gaining not only from a research perspective, but a personal perspective as well. I hated EDS, yet it was helping me grow.
The first thing that comes to mind when I think about spoons is Emmie. I met Emmie through a coworker. She was battling a chronic illness of her own, and taught me the spoon theory, an analogy by Christine Miserandino that uses spoons as an analogy for energy. A healthy person gets unlimited spoons, but a chronically ill person gets a limited number of them. Emmie taught me how to ration my spoons. Emmie was my first spoonie sister.
The first thing that comes to mind when I think about acceptance is Dani. On my first Rare Disease Day at Rutgers event, I met Dani. She had found out about my event through a mutual friend, who I had met in the cornfields of Minnesota. Dani was hesitant, especially because she didn’t know me personally, but she was struggling with an undiagnosed illness. That day, we exchanged numbers. We texted more and more. We compared joint problems and heart rates. We felt less alone. Dani has visited me in the hospital countless times, giving doctors lifesaving advice. Three years later, and she’s been diagnosed with EDS as well, another coincidence which has given me faith. Dani showed me to stop denying, and to accept.
After months of research at Rutgers, I felt as though I had exhausted my resources. It was May of my junior year, and I had only worked at one laboratory. Everyone around me was moving at a faster pace. I was limited to wherever public transportation could take me. Surrounding me were successful friends who earned internships cross-country, while I stayed at home going to my near bi-weekly appointments.
My mentor apprised me that I would be working with another student on an EDS project involving the Biomedical Engineering Department that summer. I accepted the position. I loved my coworkers, and I loved my research. However, I felt as though I was underachieving, and inadequate, despite the healing that I thought I had achieved. Despite thinking I understood my disease, and my burden.
The first thing that comes to mind when I think about validation is Rose. That summer, I began working with another student, Rose. Rose had EDS. We shared many similarities. We were nerds. We loved tea. We both attended college and fulfilled the demands of research, despite being chronically ill. I did for Rose what Emmie and Dani did for me—I validated. We spoke about self-doubt, and coincidence. I began evolving. I began understanding.
The first thing that comes to mind when I think about a path is destiny. EDS is rare. However, our struggles aren’t. We all have something that we struggle with, something that challenges and pushes us. I don’t want to inspire you. I don’t want you to think, “Just because she can, so can I.” I want you to find your struggle. I want you to understand what you hate. I want you to embrace your burden. If not for my struggle, I would not be dreaming of becoming a physician scientist for children with rare diseases. If not for my struggle, I would have never met my soulmates. It took years for me to realize that my sorrow was a strength. It took years for me grow, and years for me to change. In order to find your path, you mustn’t be complacent. Instead, you must comprehend. Do not settle, and instead, use your struggle. Find your path, stumble upon your coincidences. Embrace your weaknesses.
The first thing that comes to mind when I think about Allysa is healing.
Allysa Kemraj is a current senior at Rutgers University battling Ehlers-Danlos Syndrome. In the future, her goal is to earn an MD/PhD to better serve the rare disease population as a physician-scientist. Her favorite things include her dog Minnie and cat Figaro, playing the clarinet, the great outdoors, and rainbows.