I was 20 years old and sitting in an economics class when one of the school administrators pulled me out of class to tell me that my baby brother was rushed to the local emergency room. I immediately thought oh no, typical college freshman had too much fun last night, hope he is ok and then I thought I will be a bit mad at him once I make sure he is ok. I drove to the hospital and saw him hooked up to all sorts of machines with a mortified look on his face. A look I hadn’t seen on his face since our dad passed away some 8 years before. I asked him what was wrong and my big, bad little brother, in the most childish voice, said Nena (his nickname for me since he was 3 because he couldn’t say Elizabeth when he started talking at the late age of 3.5) “I can’t feel the right side of my body and I am scared.”
I don’t know how many doctors, a transfer to a much larger metropolitan hospital, countless sleepless nights, sooo many tears, even more prayers and a desperate call to the same doctor that saw our dying father all those years before to please come help since no one else found or seemed to believe there was anything wrong with my sweet brother. A Hail Mary call from my mom to that doctor, a doctor that took a look at some scans that so many doctors had seen and yet saw nothing and my Dad’s doctor found something. That something was not the answer we wanted but it gave us answers, that something was a neurofibromatosis type 2 diagnosis for my sweet little brother.
Every year, Elizabeth leads Team Artie’s Amigos at the Shine a Light NF Walk in San Antonio.
I walk because my brother can’t!
NF2 has taken my brother’s ability to walk unassisted.
NF2 has taken my brother’s vision, hearing, balance and independence.
However, NF2 CAN’T take my brother’s sense of adventure, his sense of humor, his deep ability to love and care, his passion and his smile that can light up a room!
My brother, my hero, is more than NF2, he is more than all of his brain surgeries and alI of his disabilities.
I walk because I want my brother to be in charge of his future, rather than let NF2 dictate his future, and I believe it is possible with more funding and research to obliterate NF2.
As a sister, I worry about my brother every single day. I worry about his wife and my mom and the toll that NF2 takes on caregivers. I do a lot of encouraging and supporting my brother in any way possible but behind the scenes the anxiety over his health is insurmountable. There is also so much guilt- why him. I would take this burden in a heartbeat from him to free him of the agony. So often, I feel helpless because he is in so much pain, mentally and physically, although he is not much to talk about it. I just don’t know how to help or support him through this horrendous disease that has claimed so much of his life and even personality.
