My Story: Video!

I’m Anne Shigley and I’ve lived with NF2 for 18 years.

After a hearing test in first grade in Atlanta, GA, I had an MRI that led to NF2 diagnosis.

The summer after 2^nd grade, in the middle of the Atlanta Olympic Games,

I came down to breakfast one Saturday with the right side of my face paralyzed by an NF tumor.

Within a couple of weeks, my parents flew me to Los Angeles where Dr. Brackmann at House Ear Clinic took out the tumor.

I woke up grinning from ear to ear… and asking for a hotdog, but deaf on the right side.

Through the rest of my childhood, NF was an issue because I heard only on one side and had to have MRI’s every year.

But otherwise, I was just a kid going to school, enjoying Girl Scouts, babysitting, art, and then cross country, swimming and track teams in high school.

Going into my senior year, my doctor in Atlanta said the tumors in my left auditory canal and on my spinal cord, which he had been watching for years, had grown.

On a visit to the Harvard NF Clinic in Boston, Dr. MacCollin told me that someday I would be deaf, though probably not right away. I said, yeah, maybe when I’m 80.

On the flight home, I cried silently the whole way.

Six weeks later, the day my parents and I were flying back to Boston for spinal cord surgery, my hearing faded out. My parents and the nurses had to write on white boards to communicate with me.

As soon as they let me travel, I flew to LA for another surgery at House Ear to decompress the tumor, but it did not restore hearing.

I finished high school with a captionist sitting beside me.

Going deaf at 18 was hugely traumatic.

I can understand why some people would give up on life.

The next fall, I entered Maryville College in TN, and was happy to be on the cross country team. Maryville was great but I realized I needed more to learn to live with my hearing loss.

That spring, I took a medical withdrawal and got an Auditory Brainstem Implant at House Ear, spent the summer at Gallaudet in Washington, DC, for a crash course in sign language, and in the fall transferred to Rochester Institute of Technology for the National Technical Institute for the Deaf.

RIT, where I graduated last spring, was great for me, mainly because of two people:

Catherine Clark is RIT’s audiologist who works with all the students who have cochlear or auditory brainstem implants. With her help, I can now understand about 90% of speech, even though without my bionic ear I am completely deaf.

Now I’m in a masters program in early childhood special ed at Roberts Wesleyan, functioning in a hearing classroom with just minimal support.

The other person is a boy I met on a Campus Crusade spring break trip – Steve Noble, my fiancé. We will be married next June. Steve is totally supportive, doing triathlons and swim races for CTF, as well as this marathon…. Even though he equates running with pain and misery!

And my parents back home in Atlanta have been very supportive every step of the way. They couldn’t be here this weekend, but dad did a half marathon this morning in Savannah and helped raise funds from a lot of his friends.

When I see all the lives that have been ravished or cut short by NF, I realize that I am very fortunate, blessed to be a blessing to those who have been less fortunate with NF.

Thank you all for your support for CTF. Together we will help find a cure!