She showed up in the 1990s with a pop in my right ear and a subtle muting of sound. A response to altitude? A wax build up? A bad attitude? No one knew.
There were years when she didn’t demand much other than one hearing aid in the weaker ear. She hid in the background like a stealthy sniper.
“There’s no reason to think you’ll lose more hearing,” my trusted otolaryngologist at Strong Audiology in Rochester, NY said after thorough testing around 1995. “Your loss is mild. It shouldn’t get worse.”
Meniere wasn’t listening. Instead, she grew stronger and I grew deafer in fits and starts. We held steady between 2006 when my husband was diagnosed with cancer and 2013, five years after his death. Under the worst pressure of my life, she was merciful—or on vacation.
Until she wasn’t.
In February 2013, I had what’s aptly called a “drop attack.” Without warning, I fell over walking with my friend Janet in downtown Ithaca. When I tried to stand or even sit, I toppled over. My mind was clear, but I had no balance. When the disequilibrium was at its worst, nausea and vomiting joined the party. The world and I were out of control, just when I had a book coming out.
Is that any way to treat a friend?
It’s hard to diagnose this disease, but my neurologist, ENT, audiologist, and internist finally agreed. My companion got a formal name: Meniere’s Disease. She’s a bitch to treat.
I tried acupuncture, homeopathy, salt-free and sugar-free diets, cranio-sacral therapy, flower essences, massage, chiropractic, energy healers, and physical therapy. I tried a medical psychic before I surrendered to a low dose mix of prescription drugs that keep me upright. I dug into psychological connections. I’d been depressed and jealous of my husband’s writing success when deafness began, but that had ended long ago. I worked hard with therapists to find the psychological thread, but nothing held. Meniere had a mind of her own.
Before she showed up, I loved socializing and playing. I loved to jive and tease with quick verbal pokes and laughs. I loved dancing to wild rhythms and listening to opera and classical music. I loved restaurants, classes, lectures, and traveling.
Meniere hates all that.
She wants me to herself. She doesn’t even like my family. She likes silence or the simplest sounds like peeper frogs or a mourning dove. She likes my quiet dog. Music is dissonant noise to her. She’s agitated by restaurants and parties. If given a choice, she’ll stay home.
Extroverted and curious by nature, I struggle with a disease that cuts off communication. I won’t give up. Despite it all, I’ll lead a weekend workshop about “Aging, Grief, and Mythology” at the C.G. Jung Association of Central Ohio this fall. I warned them that my friend Meniere will be with me. It’s easy to present material, but the problem is with discussion. I’ll need help. They want to help. I’m willing to try. I’ll keep trying until I fall flat on my face
I want to teach and attend conferences, but Meniere shakes her head and scowls. I stand with my hands on my hips and growl at her. I’ll keep doing what I love as long as I can.
When I try to hear in a noisy world, she howls and echoes like a horror movie. She drones and hums like a room of industrial fans. It’s too loud or too soft or too distorted or muffled or mushed. When I ignore her, she sends imbalance, disorientation, and exhaustion. Sleep, rest, and time-outs from hearing help. When that fails, my doctors and I worked out effective medicines. Some I use daily. Others I use when Meniere acts like wild child on a rampage.
Menier recently killed the remnants of hearing in my left ear. I’m ready to try a new right ear hearing aid, though my doctors don’t think it will help much. Since my hearing aids are five years old, it’s worth a try. A cochlear implant may be in my future, but my right ear is holding on. Besides, I’m great at reading lips.
“You’re stubborn,” a friend said when I told her I’d agreed to give a workshop. It’s true. I’m stubborn.
Meniere is a bully. She wants an exclusive relationship. I’m not willing. I try to see her as a teacher about suffering and how little we can control. I’m grateful I’m a writer, not a singer. I’m grateful she hasn’t stolen writing. I’m glad she doesn’t interfere with my love affair with Nature. I’m grateful for patient friends and family.
Do you struggle with infirmities that make it harder to do what you love? How do you handle this? Are you ready to give up? Hearing loss is associated with social isolation, dementia, and depression. Yikes! That inspires me to stay connected through social media, small social gatherings and classes, and through writing. For another article about my hearing adventures, see Dizzy, Deaf, and Determined. I’m inspired by Evelyn Glennie, a world-class drummer who hasn’t let deafness stop her. Her TED talk is “How to Truly Listen.”