Sunnybrook Hospital in Toronto has completed almost 2,000 cochlear implants to restore hearing in adults affected by severe or profound hearing loss — people like me. Of those, about 50 share my condition of bilateral Meniere’s Disease. It’s a condition that puts the inner ear through repeated wash cycles, triggering vertigo and progressive hearing distortion and loss. In some people, like me, both ears are affected.
Gael Kennedy Hannan asked me to write about my experience with Meniere’s and my cochlear implant for her blog: Hearing Health Matters. Gael is also author of The Way I Hear It: A Life with Hearing Loss. After having my cochlear implant surgery at Sunnybrook in fall 2017, it’s a new chapter for me as I get used to a brand new sound pattern in my right ear and the possibilities of better hearing, better engagement – and even the sound of music.
I was on a deadline for a news story for the Addiction Research Foundation, 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. My eyes jerked back and forth but could not catch them.
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. After my morning coffee, life was good. I was working with a great team. Together, we were telling the story of an organization committed to helping people — through addiction treatment and research. (ARF is now part of CAMH, the Toronto-based Centre for Addiction and Mental Health).
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 did notice 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 Meniere’s Disease, a condition affecting my right inner ear and consequently my balance and hearing. I was told Meniere’s “took its own course.” 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 – tackling an emerging global tax law that targeted tax havens.
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, at the same time worrying about how to face work the next day. As is the case with Meniere’s, some hearing returned the next day. It was distorted, but I got by. After seeing my audiologist, I started wearing two hearing aids as the Meniere’s was now bilateral — affecting both ears.
I was no longer young, but I was still strong and could tough it out. RBC became a leader in engaging the new global regulations, and I was proud to be a big part of the team that made it happen.
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 Meniere’s disease. It was the first time I had heard someone mention “my” condition in public. Guy took a refreshing approach to his health challenge. He used humor to create awareness about Meniere’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. I discovered he was a hockey player, like me, who noticed that the body mechanics of ice skating – its different ballet of angles and gravity – were positive for people like us who had balance problems.
Another ally was Don Lynch, a retired high school teacher who started a support group for Meniere’s patients in Toronto. The words from Don that stuck with me are about making the choice to “stand up” to face the challenge of Meniere’s – or any life challenge for that matter. Don also created a forum for people to share their experiences, fears and hopes.
A moving target
As my audiologist – now at St. Michael’s Hospital – told me, my hearing was a moving target. It could be tested conventionally, but the sound pattern changed daily in both ears. On paper, based on conventional testing at different sound tones, I was a good candidate for hearing aids. And they had helped me. But each day, I was finding it harder and harder to function at work with tasks we all take for granted – speaking on the phone, participating in a small meeting, or having coffee conversation with colleagues.
My hearing loss was in the 60-70 decibel range in each ear, (human speech is about 50 DB). To complicate matters, my hearing aids were amplifying sounds distorted by Meniere’s disease in my inner ear.
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. I think I did some of the best work of my career in a 2 ½ year stint with CAMH, a world-class hospital integrating mental health care and research.
As my Meniere’s progressed, I became more assertive to disclose my condition to my team and colleagues. I also found some workarounds to be able to continue to function as a hospital reporter and photographer, telling the CAMH story. The organization and my colleagues stepped up to help. In a couple of cases, for example, colleagues joined 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. Especially for a hearing impaired person, it’s hard to imagine a world without the ease of text messaging, bbm, email and social media.
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 was surviving when I should have been thriving at work. I had been referred by St. Mike’s to Sunnybrook’s Cochlear Implant program. After extensive testing of my hearing with and without aids by Audiologist and Program Coordinator David Shipp, I qualified and was put on a 12-18 month wait list for the surgery.
I was strong, but not 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.
At home, 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. My mood was affected and I know I was sometimes miserable to my family and others.
Through ups and downs my wife and kids were there for me. I’ve had to lean on them, and I want them to be able to lean on me going forward.
A new hearing system
In October, 2017, Sunnybrook’s Dr. Vincent Lin successfully completed my 90-minute surgery to implant the device. In November, Audiologist Anna Leung activated it for the first time, and started the process to fine-tune it at different tone levels. I had a new hearing system in my right ear, and continued to wear the conventional aid in my left ear.
Sunnybrook Hospital has completed close to 2,000 cochlear implants in adults. About 50 of those patients have my condition: bilateral Meniere’s. I’ve met several of them, either in person or virtually. What I’ve heard anecdotally matches my own experience to date with the cochlear implant:
- There is likely to be a good result early on following surgery – this may be because people with Meniere’s have already coped with variable hearing patterns. Perhaps our brains can pick up the new pattern quicker. I noticed right away how the implant was filling in high-pitched components of speech, like the letter “S”, and this made conversation easier.
- The ability to hear in noise may be improved. One of my fellow Meniere’s patients said this was the top benefit from his implant. I’ve personally noticed better discrimination of voices in a noisy environment – specifically the pool hall where I meet some neighborhood friends to have a pint and shoot pool. With my cochlear implant, conversation seems easier and more spontaneous. At the same time, certain environments are challenging and I am starting to experiment with a directional option for noise control on my implant processor.
- There may be a reduction in symptoms of vertigo. In the first six weeks following my surgery, I thankfully have not experienced vertigo symptoms, apart from surgery-related dizziness that went away quickly. I will continue to track this. A Meniere’s patient I spoke to reported a reduction in the problems he had with balance and vertigo.
These potential benefits deserve further research as cochlear implant programs grow and continue to assist more patients like me who have Meniere’s Disease.
These days, I complete daily homework to improve my new hearing system and my brain’s ability to adapt to it. I’m told this will take some time. My homework includes word recognition exercises, audiobooks, and coffee chats with friends. The chats help me get used to different voice patterns, and to reconnect. To keep things fun, I sometimes stream monologues from Jimmy Kimmel, Jimmy Fallon, Seth Mayers and others directly into my new right-ear hearing system.
Nadine has attended audiologist appointments with me and jumped into the tech side of my new tools – helping set up my new remote microphone pen, and sorting through the pieces of the puzzle of my cochlear implant processor.
Personal allies keep popping out of the woodwork, including cochlear implant patients and friends who have offered support. In turn, I can also help others who are now on the wait list, or who want to share their experience with hearing loss or Meniere’s. I also have learned more about a thriving deaf culture, and the challenges deaf people face in a hearing world. I took my hearing for granted when it was normal, and am still catching up on some of the current issues of advocacy and human rights.
After giving up music a few years ago due to hearing distortion, I am slowly rediscovering it again. I’ve been playing some Elton John songs on our 1920 Heintzman. I am a hacker on the piano – my background is percussion – but I’m appreciating the chords and notes that I am hearing again. I find it a bit easier to hear and “get” music on the radio too.
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….”
And I’m starting to feel good.