The ironic tragedy of neurological disorders is that the human brain fails to comprehend itself. Unfortunately in the case of migraine disease, there has historically been a limited understanding of the underlying pathology of the disease. Even in the cases in which modern science has begun to explain migraine disease, that knowledge has not been broadly disseminated. Furthermore, the symptoms of migraine are felt and explained subjectively by the individual and it can be difficult for others to relate to those experiences. In the case of a broken arm, the patient’s recollection and explanation of the injury are not necessary to its diagnosis since the x-ray will indisputably prove whether their arm is broken. The pain is easily understood, because of the physical manifestation of the injury. However, the symptoms and discomfort that accompany migraine are difficult for one to cogently explain and for others to truly comprehend. Without a comprehensive understanding of this invisible illness, how can society begin to empathize with people who live with it every day?
In January 2018, I suffered a severe Traumatic Brain Injury (TBI) when I slipped down the stairs at my home. Following my accident, I had extreme headaches, light and sound sensitivity, dizziness, and balance issues. Due to the severity of my symptoms, I was unable to return to school until April and even then only for short periods of time because the headaches and fatigue made it difficult to attend classes for more than an hour or two. Throughout the following summer, I suffered from headaches that my doctors believed to be a result of post-concussion syndrome. In mid-October, I began to experience more severe and persistent headaches, balance problems, difficulty concentrating, double vision, and weakness/loss of function on the left side of my body. As my post-concussion syndrome morphed into migraine disease, my parents and I sought advice and treatment from numerous neurologists. At each appointment, the doctor would ask if I felt alone in my experiences, and I would consistently answer “no”. I was surrounded by loving friends and family who always supported me, how could I be alone? It was not until I met a stranger with the same condition I had that I realized what my doctors were truly asking me.
Approximately 7 months after the onset of my migraine disease, I traveled to Kansas City for a student competition involving creative problem-solving in the STEM fields. That weekend a tornado was anticipated, and the changes in barometric pressure exacerbated my migraine attacks. The competition was held in a convention center that had bright lights and was crowded with students practicing projecting their voices. I was wearing sunglasses, earplugs, and using my neuromodulation (sTMS) device every 15 minutes. A woman nearby, Mary, asked my dad about the device and explained that she too lived with migraine and could sympathize with my pain. Although we had little in common beyond our illness, within minutes we were sharing the little “life hacks” that helped us get through the day. I talked about how impactful the sTMS had been for me and she shared the special migraine-relief glasses that had helped her that day. Mary was the first person I interacted with who had experienced my symptoms and the conversation made me realize just how “alone” I had been before. She had overcome the initial awkwardness that accompanies inquiring about another’s medical condition and the conversation that resulted had a huge impact on me. I wanted to share the impact of that simple connection with as many others as possible and I realized that I could do so by being an advocate.
At first, the thought of talking about myself and my experiences repeatedly felt deeply uncomfortable. However, as I researched non-sports-related concussions, I discovered that people like me rarely shared their stories. I wanted to be a small part of helping my peers feel less alone, and from my brief conversation with Mary, I knew small interactions could leave a big impression.
I feel that by sharing my story, I could contribute to a greater understanding both by correcting misconceptions held by those who do not have this condition and by confirming to those with the condition that they are not alone in their experiences. Previously, I felt that discussing my challenges would result in my teachers and peers questioning my abilities and as a result, I rarely discussed my migraine triggers with anyone. I noticed that my migraine attacks were triggered during Chemistry class whenever the teacher paced across the room while writing notes on the board. When I finally opened up to my teacher about my story and the effect migraine disease had on me, we collaborated on a simple solution in which she provided my class notes in advance (and a comically large periodic table!). I had been reticent to communicate about my illness because I felt it would cause others to believe I was less capable, but in reality, only by taking that critical step would I be able to prove my capabilities. As a result of this experience, I hope a student with similar circumstances as me will not feel judged for requesting accommodations beneficial to their health and circumstances.
I discovered the true power of advocacy and its ability to allow you to form connections with people who have similar experiences. Through my advocacy efforts, I connected with a young woman who shared an eerily similar story like mine, as she too slipped downstairs in 2018, and suffered a severe concussion. We both had contemplated how our lives would have been if we had just walked down the stairs more cautiously that day. We both now walk gingerly downstairs, holding the railing, out of fear of repeating our fall. We laughed together wistfully as we noted that we truly were not alone!
Recognizing the importance of connecting with others and sharing the knowledge that I gained and continue to develop led me to start Calming My Storm, a New Jersey nonprofit organization that works to support people with concussions and migraine disease with expert interviews, educational resources, and personal narratives. We aspire to help find ways for people living with migraine to achieve their goals and strive for their dreams while recovering from their illness. For more information, visit calmingmystorm.com or follow our Instagram @calming.my.storm.
I am passionate about advocacy because it fosters understanding, which in turn leads to empathy instead of apathy, and ultimately translates into better outcomes for those seeking to overcome the challenges of this illness. Each small act of advocacy contributes to transforming society while simultaneously helping individuals and resulting in the formation of enduring relationships.
