Many of you are my friends and are familiar with the story of my hearing loss… but for those of you that are new or need a refresher, here you go.
In August of 1999, I was performing the role of Tzeitel in “Fiddler on the Roof” with the Boulder Arts Academy in Colorado. I remember clearly being on stage and in the middle of the song “Matchmaker”, I suddenly got super dizzy, like I never had been before. Then the really scary thing happened – I very suddenly couldn’t hear. Quite honestly, I thought it was my nerves catching up to me. By the time I left the stage after that scene, all had returned to normal.
Throughout the coming weeks, this started happening again, sometimes both ears were affected, sometimes just the right. I saw my family doctor, who was stumped and ordered tests and sent me to an ENT. MRIs, balance tests, bloodwork, and countless doctor visits later, there were still no answers….and it seemed I was now completely deaf in my right ear. The attack happened in the middle of the night – my neighbors took me to the ER with zero results – and my hearing just never recovered.
That led to a visit in January of 2000 to Dr. Bruce Gantz at the University of Iowa, where my parents lived and I had earned my undergraduate degree. He was supposed to be one of the top ENTs in the world. After reading my chart and my history, he walked in the room and was able to give me a diagnosis right away: Autoimmune Inner Ear Disease. I have had Crohn’s Disease, an autoimmune disorder, since I was 12 years old, so it made sense and the pieces just clicked for him. Because I had waited as long as I did trying to get answers, we were unable to recover any of the hearing in my right ear. A course of steroids may have helped if I’d gotten to it sooner, but we will never know.
Eventually, I got used to having single-sided deafness. I kept pursuing my dream of being a musical theatre performer and even had some major roles in Boulder area theatres… and then it happened again. August of 2001, I had just had the best audition of my life and landed the role of Miss Scarlet in “Clue: the Musical”, a role that I would never even end up rehearsing.
I saw Dr. Gantz again right away this time, and he had me start a course of steroids before I even got to Iowa City. This time, we went through the motions as if the steroids would not work. We made a plan – bilateral cochlear implants. I met a woman there who had them, she convinced me there was hope, even that I might sing again. I went home and my (now-ex) partner, my parents, and I read all the research and stories and learned all about the amazing cochlear implant technology of 2001.
Good news/bad news: The steroids worked. I regained some hearing in my left ear. The bad news was, it was nowhere near normal, but it was enough that I no longer qualified for the cochlear implants at the time.
So on with life I went. I got a super powered digital hearing aid for my left ear. Found an amazing audiologist and an amazing voice teacher, both of who worked with me to get me singing again. Found an amazing theatre company, Phamaly Theatre Company in Denver, where I had a couple of lead roles and had the incredible experience of creating a personal assistive listening system with a professional sound designer.
That was all well and good. 15 years, a move to Indiana, and several hearing aids later, as well as a couple more evaluations for cochlear implants which I failed (passed?) due to too much hearing, here I am today.
Last year, I joined the Board of Directors of an amazing organization, Hear Indiana. With the encouragement of their staff and my fellow board members, I decided to pursue getting a cochlear implant again. This time, I qualify. So hear I am, starting a new journey yet again into new hearing.