“…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 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.“ To read more, visit Fabulous Running Mommy , on why she runs for the NF Endurance Team.
For a long time now, I held the belief that I would live to an old age despite NF 2. I did everything possible to avoid
NF, I withdrew from my support group, I stopped going to the CTF website, I had hardly visited the blogs of other NFers and I limited my communication with fellow NFers. I clung on to the concept of ”out of sight, out of mind” because it made me depressed and scared to see what others had gone through. I didn’t want to go through the same things, and I was desperate for a way to escape. After 10 years since my first surgery, I’ve gone through countless MRIS, surgeries, doctors and tumors and suffered one health problem after the other: hearing, weakness in the limbs, paralysis, vision impairment and back to paralysis and now my hearing. In fact I still live with a physically challenged body: a weak left hand and leg, imbalance and hearing loss. Thinking about how many things I’ve gone through, you can imagine why I had shut myself off, I couldn’t bear worse things happening to me and I wanted to hope for the best. Now, as a 20 year old, I’ve come to recognize that perhaps my body will be further ravaged my NF 2 in the future but my mind is a lot stronger than it ever was.
I do not know what God’s plans are for me but to say the least, it is reasonable to assume that God will not extend my suffering for too long. I may outlive my mother, I may not. Who knows? But I too vow to live fast and die young, and I will not allow NF to take even a smidgen of my soul with it. This is one of the reasons why I am not a regular 20 year-old. I know what I want out of life before I die. Four things that come to mind is that I want to become a clinical psychologist, I seek to enter Gallaudet University for a doctorate in clinical psychology. Many people have tried to sway me in a different direction, brandishing America simply for people who are special and rich. I could even remember a time in which my own mother discouraged me from going there. Nevertheless, I know different and I believe different. I have not seen another country in this world that devotes much of its time and resources to the disabled community. I have an unmistaken belief that a person such as I can contribute productively and my quality of life improved. That’s why I dreamt and still dream of America.
Another thing I want out of life is to be a mother, call it primal if you will, I don’t know. In the past, I thought
motherhood was not within my reach because I couldn’t fathom the thought of passing on a defective NF gene. That’s not what you call being a selfless mom, to watch your child going through the same things you did. Now, with technology available, scientists can manipulate embryos without the NF 2 gene in a process called called preimplantation genetic diagnosing or PGD. How elated I am to have found out about this, because my dream is now possible in the near future when I am financially independent with a stable partner.

Third thing I want to do in life is to give back to this world. I’ve thought about this often and my heart rests in those furry creatures we call dogs. No dog in this world is below a human being and I firmly believe that they can teach us a hell of a lot of things like true unconditional love. I love Chanel to bits and she will always have a special place in my heart. Noah is the next in line, he drives me and my mother crazy but there’s only one Noah who I so dearly love with all my heart.
Finally, I want to travel the world more. I have not seen enough of it. I want to experience what my friends are
experiencing in Europe and Asia, taking in the sights of Barcelona or swimming with dolphins in Japan for examples.

These are what I want out of life and I will not rest till I achieve them.
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