Choose to Be Happy
For those of you who don’t know my past, here’s a brief synopsis: I started playing piano when I was about 8 years old. When I was 10, I switched to the alto saxophone and never looked back. I played through high-school and then got my Bachelor’s of Music Education degree from James Madison University in 1992. I was ready to go teach band in public schools, or so I thought.
When I was a freshman at JMU, I was referred to the Disability Services Office (the fact that I was referred there by a third-party who had had limited personal interaction with me about the issues is rather questionable, but that’s a topic for a whole different blog). I was beginning to walk funny, so that made marching band more difficult. But I didn’t think it would get worse and especially not be a progressive disability that I would have to deal with for the rest of my life.
My disability is Friedreich’s Ataxia (FA) and if you want to learn more about it, you can visit the National Ataxia Foundation (https://ataxia.org/). First of all, it screwed up my balance, and I now use a wheelchair (manual right now, but will likely have to switch to a powerchair as the FA gets worse). Next it impacted my physical coordination, making my ability to play the saxophone difficult and because FA is progressive (meaning it gets worse over time) I eventually stopped playing. Another aspect of FA is that one’s hearing is affected and my hearing deteriorated to the extent that hearing aids would not help.
In 2010, I got a cochlear implant in my right ear and it definitely helps, but it did not bring my hearing back to normal. My hearing loss is not so much that I’m unable to hear sound, it’s more that I can’t discriminate among the sounds I hear so everything is one big jumble. And that goes for speaking as well as music. Because I know what I should be hearing when I listen to music and I have a hard time doing so, whether it’s the cellos in Leonard Bernstein’s Jeremiah Symphony, Maynard Ferguson’s trumpet in the Stan Kenton Orchestra, or Angus Young’s guitar in AC/DC, I find no enjoyment in listening to music anymore. For someone who imagined their life focused on music, this is a big gap in something that I found so enjoyable.
You may wonder how with such a profound loss that I can be happy. I must admit, I get frustrated that I can’t hear music and it is difficult to follow a conversation when there is background noise. But I realized that being angry about it all the time was not going to change anything. Since so much of my life is beyond my control, I find other things to focus on for enjoyment that are in my control. I have accepted the fact that large groups will be difficult for me and following the conversation will be hard. So I do go to events with large groups of people, but I try to do smaller activities with friends and family to make it easier to hear. As far as music, I still go to the theater and see either open captioned shows that I am familiar with or go to a theater near me where there is no dialogue and the costumes and dancing show the emotion of the actors. The bottom line is that only I can control is whether I am happy or not. And I have chosen the former; instead of grieving the loss of my hearing I do the best I can. I choose to be happy.