There are so many ways to process difficulty, and I definitely have to say that my default is to simply learn as much as possible about whatever I’m facing. On my road with hydrocephalus, I’ve found my way through so many dark valleys by throwing myself into the quest for better understanding, alternative answers, and ultimately, for solutions. Sometimes, this relentless pursuit leads to frustration and sadness, but more often, it leads me to a place of peace - where I can feel like at the very least, I have done my homework, and tried my very best.
A recent opportunity for learning has led me to research the FDA (Federal Drug Administration) process for approval of medical devices (such as shunts). In my learning about the steps that it takes for a new and improved implanted device to reach the market, I heard a term that struck me in a way I didn’t expect. In order to be granted the opportunity to enter the early stages of approval, such as clinical trials, a company must prove to the FDA that their new (or improved) device meets an “unmet need” for a specific patient population. This makes good sense, from a practical standpoint - but it really got me thinking about how that concept applies to the way I look at so many things. Obviously, it made me think about the future solutions for hydrocephalus, and about the doctors and researchers who are truly passionate about finding a better path for all of us who suffer through this often crazy journey. But I also feel like this concept has so many parallels, in other areas of life.
As a businesswoman, it made me think about my role in the construction community, and in my family’s business. What is the impact that I can have in the lives of my clients, and I am able to provide them with something they can’t find elsewhere?
It also struck me that I have encountered the concept of “unmet need” over and over again in advocacy, as I have publicly shared my journey with hydrocephalus with the world these past few years. What is it about me… about my story, that has allowed and cultivated such a incredible community to grow around me? What draws people to my online journal of hope, trial, victory, and struggle? Is it because I am real about the painful parts of all of this, but I refuse to see life as anything but beautiful? Is it because my path hasn’t been easy, but by all accounts, I have been successful at navigating the medical circus that hydrocephalus often brings? Or is it because I have a brilliant medical and rehabilitation team, who have personally invested themselves in my success?
In the end… I came to this conclusion about advocacy. When I believed that I could make a difference, I took a leap of faith - and opened up my life. I believed that I was given a purpose, and I followed that path, and even though it has been painful and vulnerable - I stayed. I didn’t fully understand it when I started, but I hoped that I could fulfill an unmet need. I aspired to make a difference and encourage others.
Last month, I re-posted a blog entry I wrote on Mother’s Day of this year. It is entitled “Ubuntu” which is an African word that means “I am because of you.” This particular post is special to me, because I wrote it as a tribute to my own mother, who is an amazing human. But as I read the messages and comments that came trickling in as the re-post hit social media, I was reminded what this whole advocacy thing is about. This is about being open, being there, being willing to stay and fight when the battle rages… and it’s about filling an unmet need in the life of another person, as you walk a parallel path - and as you choose to do life together.
I am, because of you.
Stay in the arena.
My name is Amy but friends and family call me Am. I am a lover of dogs, good whiskey, and strength training. I'm a brain surgery survivor (x28), a fiddle player, a construction designer, and a boxing enthusiast. I have six real siblings, and five fake brothers. I love deeply, and consider my close friends to be family.