By Alice Sheinman
About eight years ago when I was 46, a few days after having a very stressful cataract surgery, I started to trip over my own feet. My balance has never been very good, but this was out of the ordinary, even for me. I had to ask my husband to come home from work to take care of our 8-year-old son. After the attack passed, I noticed that I wasn't hearing very well out of my right ear. I went to the doctor, who thought it was a sinus infection and gave me an antibiotic.
More vertigo attacks followed, and eventually I was diagnosed with Ménière's disease. I found an ENT who specializes in this chronic vestibular disorder that affects balance and hearing.
I was put on a diuretic to help with fluid retention and underwent endolymphatic shunt surgery, where a tube was permanently put behind my right ear to drain excess fluid. The vertigo attacks finally stopped, but I started having tinnitus and vestibular migraines.
To stop the headaches, I tried different medications that made me tired, gave me brain fog, and caused my hair to fall out. I told my doctor, “I pay too much for these highlights to see them on the bottom of the bathtub!” I decided to stop all of them and just take the diuretic, so at least I still have my hair.
Alice Sheinman and her dog Harry, who has helped her cope with Ménière's disease.
Then more recently, a couple years ago, the Ménière's started affecting both ears. It caused a fluctuating hearing loss, so I was never sure from day to day if I would be able to hear or not. This was devastating. I am already legally blind, with only about 25 percent vision in my right eye. Hearing had always been how I navigated the world.
I didn't want to live as a person with no hearing and low vision. I became very depressed. I am a musician, and play the alto saxophone in a local community orchestra. I've been playing the instrument since I was 12 years old and wondered if I could continue.
I had another endolymphatic shunt surgery, this time in my left ear. Afterward I was home feeling sorry for myself. My sister called and said she was getting a puppy to be her dog’s playmate, and there were other puppies available—did I want one? After years of telling our son we couldn't get a dog because of the responsibility involved, this time I said yes, and we brought Harry home two months later.
Harry has really helped me to cope. He is always there for a cuddle when I need it. I’ve also seen a psychotherapist, who has helped me cope with the depression and anxiety from having Ménière's and the challenge of making my family and friends understand what it’s like to have it.
Making Changes
In the beginning of 2018, my ENT suggested a cochlear implant (CI) for my right ear. He explained that I would need a “backup” for when the hearing in my left ear went. After surgery and activation, I was lucky that I was able to understand words immediately.
During this time, I kept teaching cooking class to special needs high school students. The students were very kind to me, perhaps because they had their own disabilities to deal with. Every morning I would tell them if it was a bad or good hearing day, and they were very accommodating.
I used a Roger Select microphone placed on the kitchen worktable. On a bad hearing day, the students would pick it up to talk into it, so I could hear them. What I never told them was that the mic allowed me to hear them from across the room. This made for some very entertaining times!
But as much as I loved my work and students, my inability to hear was becoming more of a problem for me. I taught in a commercial kitchen environment where exhaust fans, ovens, and other kitchen equipment were constantly running—not an ideal listening environment.
Although my boss was very understanding, I started to think about another career that fit with my abilities and realized that perhaps the best job for me would be to help people just like me. I looked into the field of vocational rehabilitation. I saw I could work with people one on one or in small groups and use skills that I developed while teaching and at previous jobs in management and administration.
Who better to work with people with disabilities than someone who is disabled and can empathize with them? In the fall of 2019, I started my master’s in rehabilitation counseling at Rutgers University in New Jersey. The online format fits with my hearing ability.
I still play alto saxophone in a local orchestra. After getting my first cochlear implant, I could see that rehearsal was much harder than I thought it would be. I told the conductor that as much as I had enjoyed coming, I felt like I might be a liability. He asked me if playing in the orchestra would help my rehabilitation with the implant. I said yes, that I thought it would. He said that I was staying. I was so happy, I started crying. This group has shown me such kindness.
When the hearing in my left ear diminished, my ENT recommended a second CI. I got the surgery and, in February 2020 before the pandemic lockdown, the implant was activated. My mapping appointments for March and April were canceled, but even without the mapping the left ear came along. I graduated from hearing Charlie Brown's teacher to hearing Alvin and the Chipmunks.
I continued with school, finishing my second semester and the summer session. I am glad to be in school as it’s given me a purpose during this unsettled time, and I am hopeful that when our orchestra is able to again meet in person, the two implants will help me hear the music better.
Life has taken me on a path that I never expected to be on. I’ve realized that we need to live our own life as best we can, trying to focus not on what a disease has taken away from you but on what you can still do.
Alice Sheinman lives with her family in New Jersey. This story originally ran in the Fall 2020 issue of Hearing Health magazine.
