Author: Tony Trott
It really isn’t quitting (in my opinion anyway) if you need to stop doing something important to you because your disability makes it extremely frustrating for you or in some cases, physically impossible. I love music, always have and always will. I always heard stories about me dancing around in my playpen to Boots Randolph’s Yakety Sax album; I can’t confirm that as I was kind of young and as far as I know there are no home movies! Anyway, I started piano lessons in second grade and when I could join the band in fourth grade, I took up the saxophone (because a cousin had one that he didn’t play anymore) and did so.
My disability (Friedreich’s Ataxia or FA) did not really create major problems for me and my music until I was beginning my studies as a music major at James Madison University. Even then it was kind of just a hassle and not a major obstacle and with a little resilience I managed to stick it out and get my music degree.
Of course, there are a lot of physical issues related to FA, but the one that has always bothered me the most was the loss of my hearing. The type of hearing loss that many, but not all, people with FA exhibit seems to be 
auditory neuropathy. I am not even going to try to explain that but suffice it to say that it is significantly different from the type of hearing loss associated with aging and conventional hearing aids don’t solve the issue. My hearing loss is a lack of clarity and distinction of sounds and not one of loudness. Basically, what I hear when someone is speaking to me is nothing but a jumble of sounds and with a regular hearing aid, that just becomes a louder jumble! I did get a cochlear implant which helps some, but my hearing is still far from perfect.
My family has a very rich musical tradition, and when we get together it almost always turns into a music event. Sometimes my hearing is having a good day and I will stay and maybe even take part; but on other days, I will find no real joy in the music/sound, and I will just go in the other room and watch TV. I won’t lie, it does make me sad and somewhat angry.
As I said above, I will always love music, but it is not something I want to associate 
with unhappiness and depression. My situation is what it is, and although loss of music is hard, I can still find other things to enjoy and not dwell on my lack of ability to hear music.
can’t tell you how you should do that, I can only tell you what works for me and maybe you can adapt that to your situations.
most uplifting of all time or anything like that, but just the chorus lines about “better days shining through” and “better days with a girl like you” definitely picked me up and made me look forward to the future.
for the remainder of my life, I’d be a much-sought-after big band composer/arranger (and maybe win a few Grammy Awards along the way!).
As stated above, music was my first choice and I was enjoying the ride on that train for quite a while until it slowly started to derail due to my physical issues. Because I saw what was happening to me, I knew I needed to figure out a way to change course because my first choice was starting to derail. So, I went back to school and got my graduate degree to be a special education teacher. In another few years, that train started to derail (mainly due to my hearing issues associated with my degenerative disability) and I once again changed course and became a counselor for other people with disabilities. That became increasingly difficult (again, mainly due to my progressive hearing issue) and I resigned from my job to take a big leap and start a new business with my wife, Happy on Wheels, LLC.
