Friday, January 22, 2010

Why I Run

I was recently asked to submit a blog post for the NF Endurance Team entitled "Why I Run." My response was posted today on the official team blog! Below is the complete text of the blog, the NFET Blog had to be edited for space, and it was edited by Emily over at CTF who I want to hire as my personal professional editor because she did a fabulous job!

I don’t remember a time when I did not know what Neurofibromatosis is. My earliest memories are of my Grandmother and Uncle in hospital beds at my Great-grandmother’s house. I would crawl into the bed with my Grandma Norma and she would bribe me with little cookies. She couldn’t hear me and was so skinny, but had the most beautiful Colombian accent. My Uncle was only 25 but as a child I thought he must be older than my grandfather, his crooked smile and patched eye only added to his character. By the time I was 7 they had both passed, and all I had were photos that still hang on my walls, fading with time.

My memories of my mother are much more complicated and expansive. As a child I watched in awe when she dressed and did her makeup, she was vain and beautiful. As a teenager I averted my gaze in fear as I helped her dress, her entire spine mottled by layers of thick scars across a back that was hunched over from being cut open countless times. The makeup was long discarded, her face drooped in uneven frowns, her eyes unable to produce the tears she so needed to release. 10 years. In 10 years NF2 took an amazing, vibrant, and crazy woman, and robbed her of her vitality, beauty and purpose. I assumed the same would happen to me. Every surgery, every scar, every tumor, I would one day relive and call my own. I vowed to live fast and die young, throwing sand in the face of NF2 and taking away its power. I had surgery after surgery and began to lose things I always knew I would. I was numb and in pain at the same time, I saw no other way to exist. My son JT was born and I knew he had NF2. It was confirmed when we found out he was blind in one eye from a tumor. I had more surgery, and then became completely Deaf. Soon after, my mom passed away. I was alone and surrounded by hearing people who only seemed to care about trivial things. I joined the support group my Mom had always leaned on, the NF2 Crew. I met other people going through the same things, and much worse. People who were still going to school, working, and accomplishing things without using NF2 as an excuse. I knew things had to change.

Then, I discovered running and the NF Endurance Team. An entire group of people with the same concerns and fears I had who were fighting back and inspiring others to do the same. My first event was the Long Beach ½ marathon in 2008. As the race started and people began to move forward I thought back on my journey. Each mile was another memory to embrace and leave behind, another NF friend I had met, or even lost. I proudly wore my bright yellow singlet, and crossed the finish line into the arms of my husband. I had accomplished something concrete by raising money for CTF, but I had gained so much more along the way… acceptance, friendship, and purpose.I run because it helps me to release the pain, I run because I know my lost loved ones are proud, I run to show others that you can overcome anything, but mostly I run because I can, and I never ever want to forget that again.

Never Give Up Hope.


Cindy said...

this is incredibly powerful testimony about NF2 and THANK YOU for your involvement with CTF, NF2 is no longer brushed under the rug but seen for what it is, a very scary disease that needs funds and research to stop this madness thats been going on too long. You've been blessed with your ability to run, write, and be a great mom despite NF2!

Keisha said...

Olivia, u really have a gift of writing and inspiring, you moved me to tears and challenged me to think about my own life and what I want out of it.

Founder of Jog for Joubert Syndrome said...

hi olivia, just wanted to let you know what an inspiration you are. my cousin has NF, has battled his whole life with obstacles from scoliosis and multiple surgeries to most recently a brain tumor. it is amazing what you do. i have recently started my own running charity similar to NF endurance (but on a much much smaller scale than the NF team) for joubert syndrome which my 23 month old daughter was diagnosed with last april. keep up the good work!!!!

Kevin said...

I dont now how I stumbled across your blog, but wow, you have amazing courage and you are an amazing writer. I am a former newspaper writer and you communicate better than some of my former co-workers. God bless you and your son.

Olivia Hernandez said...

Thank for the supportive comments! I feel so vulnerable when I post these types of pieces, and knowing they touched someone and spread awareness even to just one more person makes me feel productive and validated.

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