A New Dawn for a Person with Bilateral Ménière’s Disease

Ian Kinross is a Toronto-based communicator who has worked in the health and financial sectors. On his blog, kinrosscordless, he writes about community gardening and bike repair and, now, Ménière’s Disease, a condition that puts the inner ear through repeated wash cycles, triggering vertigo and progressive hearing distortion and loss. I asked Ian to write his story for HHTM’s Better Hearing Consumer; a longer version appears on his site.  GH

by Ian Kinross

I was on a deadline for a news story for the Addiction Research Foundation (now part of CAMH, the Toronto-based Centre for Addiction and Mental Health), when the words started falling off the screen of my little Macintosh computer. I was hustling to put the story together, but the words appeared to be jumping off the page like ducks to water.

Pretty soon I was in the hard spin of vertigo – the world whirling around me. My eyes could not control the messages my inner ears were sending to my brain. Hanging on to the wall, I stumbled out of the office, lurched along the sidewalk and caught the bus and subway home.

I was young and strong and could tough it out – the hours of spinning, nausea, vomiting, and finally, a peaceful sleep.

I was back at the office the next day and wrapped up the story.  At home, in the early 1990s, my wife Nadine and I were raising two beautiful daughters, Alison and Colleen. We tried to appreciate all of the magical moments, the sights and sounds of family life, along with our busy careers.

Changing sound patterns

After the vertigo attacks, I noticed that the hearing in my right ear was becoming distorted. In fact, the sound pattern was changing day to day – from a normal but tinny sound, to a garbled effect, like the sound from a stereo speaker that had a big rip in its woofer.

As the episodes recurred, I sought help from my family doctor, who referred me to the ENT team at Mount Sinai Hospital in Toronto.  I was diagnosed with Ménière’s Disease, a condition affecting my right inner ear and consequently my balance and hearing. There was no cure, but symptoms like nausea could be treated with medication. Vertigo episodes in some cases could be prevented or mediated by a diuretic and other medications.  The condition certainly was not life-threatening and I had otherwise good health to be thankful for. “You are a young man with bad hearing,” the ENT doc told me. I was given a diuretic to take during vertigo episodes and encouraged to consider a hearing aid for my right ear.

Fast forward to 2012.  I had taken on an exciting career challenge at the Royal Bank of Canada (RBC) as senior communicator on the bank’s largest enterprise project.

One Sunday morning, I woke up practically deaf in my “good ear” – the left ear I had relied on for functional hearing for most of my career. We had a family event that day and I faked my way through it. As is the case with Ménière’s, some hearing returned the next day. It was distorted, but I got by at work.  After seeing my audiologist, I started wearing two hearing aids as the Ménière’s was now bilateral — affecting both ears.

I was no longer young, but I was still strong and could tough it out.

Finding allies

I found an ally in an unexpected place. Tech guru Guy Kawasaki was speaking at a communications conference I attended.  He told the keynote audience that he was using a cane that day and wearing a large hearing aid to deal with his Ménière’s disease. It was the first time I had heard someone mention “my” condition in public. Guy used humor to create awareness about Ménière’s – for example, claiming that he was getting deaf and dizzy from listening to too many bad pitches for new high-tech businesses. I reached out to Guy by email and we had a great virtual conversation.

Another ally was Don Lynch, a retired high school teacher who started a support group for Ménière’s patients in Toronto. Don’s words that stuck with me are about making the choice to “stand up” to face the challenge of Ménière’s– or any life challenge for that matter.

A moving target

My audiologist told me that my hearing was a moving target. It could be tested conventionally, but the sound pattern changed daily in both ears. Each day, I was finding it harder to speak on the phone, participate in a small meeting, or have coffee conversation with colleagues. My hearing loss was in the 60-70 decibel range in each ear – human speech is about 60 DB – and my hearing aids were amplifying a distorted sound.

With family and friends, I was beginning to withdraw from events and avoid conversations. I was missing the intimacy and humor of being with the people I loved.

In 2015, I returned to CAMH to take on some communications projects in the hospital’s Public Affairs group. As my Ménière’s progressed, I became more assertive to disclose my condition to my team and colleagues. So that I could continue to function as a hospital reporter and photographer, the organization and my colleagues stepped up to help, such as joining me at important interviews with patients, to ensure that, as a team, we got the story right. In other cases, I took care of photography first and filled in the gaps on a story with follow-up interviews by email.

From surviving to thriving

Still, my hearing function – and some recurring vertigo episodes – were making it harder to get the job done. I often felt I was surviving rather than thriving at work. I was approved for a cochlear implant, and while I was on the 12-18 month waiting list, I realized that I wasn’t willing to tough it out this time. I needed a change. I took a personal sabbatical from working life to focus on some new challenges and adventures, like home improvements, and learning the ancient craft of dry stone wall building.

My wife, daughters, family and friends were incredibly supportive. I recognized the impact of my condition – and my response to it – had on them. At home the four of us always made a point of eating dinner together and sharing the day. When the kids were in their teens, I was often “out of it” at dinner conversations due to the hearing problem, and to my own lack of focus. I would sometimes retreat into my own zone and miss the buzz and beauty of family life.

A new hearing system

In October, 2017, Sunnybrook Hospital’s Dr. Vincent Lin successfully completed my 90-minute cochlear implant surgery on my right ear (I continue to wear the conventional aid in my left).

I’m already seeing the benefits. People with Ménière’s have already coped with variable hearing patterns and perhaps our brains can pick up the new pattern quicker. I noticed right away how the implant gave me the high-pitched components of speech, like the letter “S”, which made conversation easier. Hearing in noise is better in some environments than others and I am starting to experiment with a directional option for noise control on my implant processor. After giving up music a few years ago due to hearing distortion, I am slowly rediscovering it again. Personal allies continue to pop out of the woodwork.

It’s early days for me as I adjust to the new hearing system. There are steps forward and back. But as the song goes: “It’s a new dawn, it’s a new day, it’s a new life…”

I’m starting to feel good.