By Andrea Bastiani Archibald, Ph.D.
About 18 years ago, I woke up one morning with extreme vertigo, or dizziness, and then later noticed that my hearing was decreasing in both ears. I also had some shooting pain in my cheeks/facial nerves.
A couple of days later, I realized I had tinnitus (ringing in the ears), and it was so loud early on—or at least so new to me—that it would wake me up and keep me up at night.
The cause for all this was very difficult to identify as I was relatively young at the time, age 32, and healthy otherwise. When I went to the doctor the same week and my ears were examined, the doctor looked for middle ear infections but saw nothing.
I then had MRIs to be sure there wasn’t a tumor, and was evaluated for a number of other health conditions, such as Ménière’s disease.
Over the course of several weeks I saw all sorts of specialists and was repeatedly tested by audiologists, but all the while as I continued to pursue a diagnosis, my hearing continued to decline. Eventually, about a month or so later, I was put on steroids and regained full hearing in my left ear.
It turns out that I have inner ear nerve damage. While the cause is unknown, I was told that I had experienced in a short period all of the “known precursors” to sudden hearing loss that, while associated with it, don’t necessarily cause it. I had traveled on an airplane, gone swimming in a public (in my case, hotel) swimming pool, and had dental work. The only one I did not experience was having a cold or virus that I was aware of.
While I was getting my hearing assessed, I could hear sounds that were extremely amplified and loud, but they were garbled and muffled, and I couldn’t make out the distinct words presented to me. So I was told that traditional hearing aids were not an option because while they would amplify sounds, they could not help with speech perception. While cochlear implants might have been, at the time only bilateral implants for both ears were an option; they were not offering unilateral implants, for one ear only.
So, since that time nearly two decades ago I have learned to cope. For instance, I know I need to always try to sit so I have an optimal sound situation at work, such as making sure I’m near to and can see the main speaker in a meeting, and favoring quieter restaurants. I’m always aware of my surroundings when in loud or crowded places.
Since I can’t localize sounds—my left “hearing ear” does all of the sound detection for the rest of me—I’m careful to try not to misplace things that I’d need to hear to find, like my phone. I’ve made it a habit to return my phone to the same location in the house most of the time, as I won’t be able to find it otherwise! And when I’m driving and there’s an ambulance siren, I know I need to look around immediately to pull over since I can’t tell where the ambulance is headed in relation to my car.
Early on everyday life seemed more impacted by my hearing loss. I had two toddlers (who are now adults!) and the hearing loss gave me new, added concerns about their safety and my ability to hear them if they needed help. I immediately started sleeping on my right side with my hearing ear “up”—and still do, to this day!
At work there were some challenges that caused me to be more self-conscious. I had an insensitive manager who used to occasionally make jokes about my hearing impairment. I also used to travel quite a bit for my job and, alone in the hotel room, I was often a little nervous when I’d hear sounds around me and my room and couldn’t tell what they were or how close the sounds were.
The colleagues I worked with most closely and the team who reported to me, however, were remarkably kind and proactive—always looking to support my needs even prior to my entering a room for a meeting or speaking engagement so my seating (and thus hearing) would be set up for success. This included having the tech person attaching my mic and adjusting it for my left/hearing ear only, for example.
I do wish I had immediately gone to a specialist at the start of my diagnostic process, but of course I just didn’t know what I was experiencing. But, I’ve learned that the body and brain are remarkably resilient! While immediately after my diagnosis I was very aware of it and it felt fairly debilitating, these days it really doesn’t affect me that much.
Along with no hearing in my right ear, I often experience tinnitus, though I have adjusted and don’t always even notice. I’ve accommodated! And my loved ones have been very supportive and understanding throughout.
I know about Hearing Health Foundation because I have a dear friend who does development work on behalf of the organization. She shared the important work HHF is doing and suggested I become involved. As a psychologist and researcher, I love the Foundation’s scientific focus on prevention and treatment. I like the sense of community with others’ experiencing a range of hearing conditions and am happy to share my story.
Andrea Bastiani Archibald, Ph.D., lives in New York and Rhode Island with her family. A former Girl Scouts USA executive, she is a strategic adviser and authority on child development and family dynamics; female leadership; diversity, equity, and inclusion; and the intersection of social, emotional, and physical health and cultural influences on young people.
Their experiments revealed a class of DNA control elements known as “enhancers” that, after injury, amplify the production of a protein called ATOH1, which in turn induces a suite of genes required to make sensory cells of the inner ear.