As Boston College students, it can be tempting to hide our true selves. Embracing our individuality can help us to understand ourselves and experience the world around us as genuinely as possible.Authentic Eagles is a series that gives a voice to the people who have experienced firsthand the trials, tribulations, and triumphs of being one’s authentic self at BC. We hope that readers are inspired to have conversations and reflections of their own, working towards being more authentic.
Marissa Bell, A&S ’15
December 9th of my junior year of high school, I woke up with tingling and numbness sensation in my hands, feet and face. After three days of worsening symptoms and failed diagnoses at various hospitals, I woke up, swung my legs out of bed and collapsed on the floor. I was taken to the emergency room where a lovely spinal tap confirmed that I had Miller Fisher Syndrome, a rare variant of an already rare disease, Guillain-Barré. I quickly went into respiratory failure and I have no recollection of the next 11 days because of copious amounts of pain medication. All I remember is the intense frustration and anger I felt at not being able to express myself.
In simple terms, MFS is an autoimmune disease that left me 100% paralyzed, where I was supported by breathing and feeding tubes in an Intensive Care Unit. While the breathing machines supported me, I became infected with double pneumonia, which was when the situation was most dire. I was not made aware of this possible brush with death until many months later, although what I experienced during my recovery is all too clear. During my complete paralysis I lost 30 pounds, making me a virtual skeleton. My doctors and family communicated with me by having me blink a yes or no while they showed me flashcards. Are you in pain? Yes, one blink. Are you hot? No, two blinks. I lost all basic functions, I had to relearn how to open my eyes, swallow, eat, move my fingers, sit up, put clothes on, and finally walk again.
I was not self-sufficient, relying on my nurses, doctors, friends and family to help me with the most basic tasks. Relearning these functions caused an immense amount of pain since the nerves throughout my body were all re-growing during this process. The combination of the physical pain and my personal helplessness sometimes caused me to be bitter and angry, and I would lash out at those who had helped me. All that I could not accomplish and all of the failures of my body defined the day. All of this occurred in the midst of my junior year when prom was a few months away, my AP classes demanded attention and I missed my friends and loved ones. Through these dark days and frustrations I learned what I had taken advantage of before I became ill, and how magical those small bodily accomplishments and my personal experiences with others were.
I learned to appreciate the small successes of my daily life. I sat up in my hospital bed for 30 seconds; that is a wondrous day. I did not throw up on my boyfriend the whole visit; that is an extraordinary day. I transferred myself to my wheelchair without help; those are the best of days. I learned to find what I was doing right, not what I was doing wrong. I had to appreciate where my successes were when all that I couldn’t achieve threatened to overwhelm me. We are all given these physical triumphs and it is important not to ignore their importance and blessing. The phrase “you do not know what you have till its gone” had never been more potent to me or less cliché.
Not only did I learn to appreciate how I was succeeding in what some may see as trivial everyday life but also to be aware and thankful of my support system. I went through life not recognizing the importance and love that came from family and friends in the biggest and smallest ways. My friends, teachers, coaches, and relatives visited various far-flung hospitals and rehabilitation centers, where they brought outrageous amounts of food, blankets and fuzzy socks while they also signed cards with heartwarming messages. There was support in all of these actions, big and small. Everyone, including myself, has support systems that help us get through life on the brightest of days, but most importantly on the darkest of days. I always try to look around myself and notice the small acts of kindness and support and express appreciation for them.
Many people who meet me have no idea that I was ever sick, which is a blessing in itself. My body has almost completely recovered from the havoc it was put through. I am just another normal human. I may not be able to run as fast, or recover as quickly from everyday infections, but I can walk for miles and explore whole cities if I want too. Though certain things were taken away, I am still left with so much to take advantage of. I have been able to attend college on time, to live in New York City for a year and a half. I have been able to travel to far flung places in Europe I could only dream of, with delectable jars of pesto. Most importantly, I have been able to come to Boston College which has consisted of the most supportive and loving friends and family. I appreciate all of these opportunities that I have continued to enjoy, all because I recovered.
If I had the choice to erase the disease from my life, I would choose not to. Miller-Fisher Syndrome has made me who I am today and it has taught me so much about myself but also about others. It has taught me to appreciate the little things in my day to day life, not just the monumental. Nothing in my life seems to go according to plan, but that has brought me to some of the best experiences and people in my life. Those few months were a crash-course in teaching me what and who truly mattered and I would never want to take that away.
