By: Megan Rivkin
I’ve always considered myself a storyteller.
I know some get thrown off by my unusual double major of drama and political science, but I have always been someone fascinated with the government, longing to speak out and make a change that’s larger than my suburban (sheltered) life. And at the same time, I have found that the best way to bring about any sort of change is through the power of storytelling.
I attended a high school with nearly 4.000 students—it was unusual environment and it led to some pretty uncommon anxieties. It was odd being a senior and passing nameless faces on your way to class, anonymous peers that you never had the opportunity to talk to or meet. So when I stood in front of 100 seniors to pitch the Hydrocephalus Association (HA) as the charity my school would be sponsoring for our yearly Spirit Fest fundraiser, I stared into a crowd of around 40 faces I just could not identify. These were my peers that did not personally know me, but somehow they knew why they should trust me– because they knew that my values were aligned with theirs. This was a huge event that historically raised over $10,000 every year. I had to prove myself, HA and to a bunch of strangers that HA should be the school’s sponsored charity.
So I got up on the stage and I told my story. I talked about the seven brain surgeries my brother endured in his first year of life. I spoke about how at five years old, too young to fully process where or why my mom had gone off to the hospital to be at my brother’s side. I talked about the fear that came with my brother’s revisions. And then I told the stories of a few of the remarkable people my family had met at bi-annual HA conferences. We met inspirational leaders and change-makers that persisted and did incredible work, while some excelled despite having over 100 brain surgeries. I told the audience about my brother—the same brother who has plastic tube in his head that often needs adjustments—was, by far, one of the “lucky” ones who are impacted by the condition.
My personal story worked—the school raised $13,000 within a month for the Hydrocephalus Association. I believe in the power of storytelling. People truly listen to stories and develop personal connections. They need stories to get inspired to make a difference. As much as we believe ideas and theories are powerful motivators, in my experience they pale in comparison to truly compelling personal stories.
A few weeks later, I sat down with one of my state’s congressmen in Washington, DC during the Rally for Medical Research. During our meeting, we asked if he would consider supporting additional funding for the National Institutes of Health (NIH), the government agency that works to prevent diseases (and conditions, like hydrocephalus) and improve health through research. The Congressman gave a diplomatic response and explained that he believed the money was not being appropriated correctly by NIH. This was disappointing to hear from my Representative and I was determined to change his mind. So I told him about my brother, Brady and his experience living with hydrocephalus. I walked out of the meeting uncertain. But within days, the Congressman’s staff contacted me to let me know that that he had co-sponsored a bill promoting a Hydrocephalus Registry that would help with research toward finding a cure.
I have realized that storytelling can be a powerful and influential advocacy tool in getting people to understand the breadth and depth of impact hydrocephalus has on individuals and families. Advocacy for HA boils down to assuring that decision makers understand the condition by telling our sometimes frustrating, painful, and life-altering stories– because every person afflicted with Hydrocephalus has a story to tell.
I urge you to tell your story. Contact your Representatives.
Megan Rivkin is the Hydrocephalus Association’s Advocacy Intern and an active member of Teens Take Charge (TTC). She attends Tufts University.