My name is Shawn I am a VHL WARRIOR! My journey started long before I was diagnosed with VHL. My father had VHL and I remember that he and my mother traveling to Boston, MA from our rural town in Northeastern Pennsylvania for brain surgeries. They would often be gone for a month or longer.
I remember when my brother, Brian was diagnosed. He had a cerebellar hemangioblastomas and he too started making the long trek to Boston with my mother.
My cousin also had VHL; his dad, my uncle, had it too. As a child, I don’t think I heard the term, VHL or Von Hippel-Lindau, until my dad died on May 15th 1980. I was 10 years old and it also happened to be my mother’s 43rd birthday. My brother, uncle and cousin have also passed away from VHL.
So where does the journey go from here? As a young adult, 19-20 years old, I would day dream about somehow being a “voice” for my dad and brother as my dad had passed away. I would picture myself coaching or giving talks about VHL. I was in college and majoring in Secondary English. I would think of ways of incorporating VHL into teaching lessons. I was not sure how I was going to spread the word about VHL but I knew that I wanted to make my dad proud. But I had fallen back to the mode of feeling like nothing really mattered as I figured I would die before the age of 40. I was partaking in too much alcohol and needed some “divine intervention”.
Fortunately, I met Kim, my “rock” and my angel on earth. We started dating; she accepted me, my VHL, and the negatives that came with it. Kim has been with me through good and bad times, side by side, cherishing the good times, and gaining strength in bad, while always being grateful.
I ate healthier and worked out with weights but I hadn’t laced up a pair shoes and ran in nearly 20 years. Well, it didn’t take long and I hit the “mill” not to run for any other reason other than trying to outrun what I knew was inevitable, another brain surgery. So I ran to help deal with the anger and fear. Physically I felt stronger and mentally, I made the switch from running out of fear to facing the fear and not giving in, fear was replaced with a new belief, a belief in myself, a belief that if I took care of my body, prepared it for battle, it would take care of me and get me through surgery.
It is funny how my thoughts, perhaps dreams, have brought me to where I am today. I’ve qualified for the Boston marathon 2015 and I am the administrator of 2 two media pages that have a total of nearly 13,000 followers that I use as a platform to help spread awareness of VHL using #VHL WARRIOR. Don’t let VHL take your dreams or your attitude from you. It has taken a lot from me and my family but there are some things it will never conquer.