When I wrote Shouting Won’t Help (2013), a memoir of losing my hearing, I went into full confessional mode. I wrote about my struggles with anxiety and isolation and depression as my hearing loss worsened. I wrote about denial, anger, grief, about drinking too much and seeing a therapist, about losing my job.
I also wrote about practical matters like hearing aids and cochlear implants, access to audiologists, how to find a support group.
But when I gave readings to audiences with hearing loss, my emotional devastation was what people wanted to talk about. I remember one reading where three women sat together in the front row and cried through the whole event. Afterwards they thanked me for putting into words the grief and anger they themselves were experiencing.
I wasn’t the first to talk about the emotional fallout of hearing loss – people like Sam Trychin and Michael Harvey had been talking about it for years. Web MD has a good discussion online, as do many other sites. But for many of those who came to my readings early on, the realization that they weren’t alone, and that it was okay to grieve, was new.
Many adjust to their hearing loss over time, as I did, and people who develop hearing loss at an early age are usually accepting of it as part of who they are. But for those who develop it in mid-life, especially if the onset is sudden, the emotional impact can be formidable.
Now three people with hearing loss have had the brilliant idea to create a Facebook forum where people can share their feelings. Richard Pocker, Mary Grace Whalen and Robin Chisholm-Seymour put their heads together and after months of discussion launched Hearing Loss: The Emotional Side at the beginning of June. They clearly hit a nerve, and as of this writing they have 900+ members and counting.
I talked to the creators via Google Meet last week. Richard is a retired business owner who wore hearing aids as a child and after losing all his residual hearing at age 30 managed by lipreading. After he retired to Florida, he learned about cochlear implants. He was bilaterally implanted in January 2016. His speech comprehension with the implants went from 0% to 85% with intensive rehab, some of which he designed himself. He went on to become a peer mentor for people with cochlear implants, then started a website and a podcast on implants. One of those he interviewed on the podcast was Robin Chisolm-Seymour, whose background is in mental/psychiatric healthcare. In her podcast interview, she talked about hearing loss as an amputation, and that sparked the idea for the Facebook page. They were joined by Mary Grace Whalen, a member of our New York City Chapter, who has published many articles on hearing loss since 1989 as well as writing on grief for the Hospice Foundation of America. She’s currently writing a memoir, “Living in the Color Magenta: Chronicles of a Deaf, Grey and Italian Woman.” All three are bilaterally implanted.
The three take turns monitoring the FB discussion, and if it starts to stray – towards the question of bilateral implants, say – one of them will steer the conversation back to the theme of the page: the emotional side of hearing loss. Readers raise their own issues, and jump in to comment on others’ posts. The discussions are generous, supportive and open.
I asked what surprised them most about the response and Richard said it was the number of people who say that they’ve never had a place to express these feelings before. “The emotion is just pouring out onto the page.”
Robin, with a background in counseling, said she was not surprised by this outpouring. Many people with hearing loss feel that they’re not understood, she said, and the page offers them a forum. Sometimes the moderators realize that someone is distressed beyond what a non-professional can do, and they try to guide them to professional support. “On the one hand we want people to share, that’s the plus side of a support group,” Robin said. “But if I pick up on something serious, I message them.” Sometimes she will refer people to professional counseling. She also cautions that everyone has a back story, their hearing loss doesn’t exist in a vacuum. So part of what she does is try to evaluate what else is impacting their life, because that can determine whether they’re going to take any action or not.
Mary said that they originally also hoped to be able to create a database of therapists who could treat people with hearing loss but so far that has not been possible. The grief that may accompany hearing loss is “disenfranchised grief,” she said, borrowing a term from Dr. Kenneth Doka, an expert and writer on grief, which society does not recognize as grief. “We’d like to be able to offer them resources that will help them heal.” (I mentioned that the Center for Hearing and Communications in New York City has counselors on staff, and that other organizations might as well. If readers know of counselors who specialize in hearing loss, please let us know.)
You can join the FB page by clicking here. Your comments won’t be posted until you’re approved by the moderators. Because it’s a closed group, the posts can not be shared. (For those who are not a Facebook users, “sharing” means copying the post onto your own page for others to see.) Our chapter also has a closed Facebook page, which we formed because in the absence of in-person meetings during Covid, we wanted people to have a place to talk to each other — to provide the companionship and support that can be lost during formal Zoom meetings. You can join us by clicking here.
Every January our chapter has an interactive meeting, moderated by someone on our board, where people can speak openly about their hearing loss. In past years, the topic has been stigma and how people experienced it. Another year the theme was self-advocacy and members shared their successes – and their failures. We had already planned that next January’s meeting would be about the psychology of hearing loss, with members sharing their own stories and offering support to others who may have had similar experiences.
In the meantime, “Hearing Loss: The Emotional Side” offers another way to express those feelings.
For more about living with hearing loss, read my books “Smart Hearing: Strategies, Skills and Resources for Living Better With Hearing Loss” and “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You.” Both are available as ebook and paperback on Amazon.com.