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 2nd
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!
