By Michele Susan Brown
When I was about age 6 or 7, a significant hearing loss in my left ear was detected by elementary school screening staff. Sure enough, doctors confirmed what they believed was irreparable nerve damage most likely caused by a high fever during early childhood. My right ear, thankfully, was above typical levels for hearing and I did not have any problems at all functioning. No strategies or protocols were put in place.
At the age of 32 (in spring 1998), I woke up one morning and could no longer hear. My right ear had taken a sudden plummet with no known cause. At the time, doctors waited weeks to see if a viral infection would run its course and heal before referring me to the ENT and neurology departments of Kaiser Permanente in Sacramento, California.
Doctors could give no explanation for this condition and diagnosed me with idiopathic sudden sensorineural hearing loss. I was fit for bilateral hearing aids and found life particularly difficult especially with my career as an elementary school principal.
I continued to pursue reasons my hearing would suddenly decline given that otherwise I presented as a very healthy individual. I found none, and little support. It was a world I found extremely lonely and separate from, even with the assistance of top-of-the-line, digital hearing aids.
Four years later, all of a sudden my hearing returned. This was surprising to me and to my doctors. It occurred just as instantaneously as it had disappeared.
For the year preceding the improvement, I had turned my gaze inward instead of outwardly to seek answers and I began taking better care of myself, seeking personal growth opportunities, reconnecting to aspects of life that I loved, learning meditation, and seeking alternative therapies.
I decided to write a book about my experience in an effort to help others in the world with any type of deep struggle. It is an inspirational book that I am very proud of. It was published in 2019 and is titled “This Kind of Silence: How Losing My Hearing Taught Me to Listen.” I also narrated the audiobook on Audible and it was cathartic for me to hear me narrate my own words (and be able to hear them).
I was fortunate to spend 22 years fully in the hearing world again after my deafness.
But on November 19, 2023, I again woke up one morning and could not hear. Doctors this time immediately put me on a dose of oral steroids, then referred me to audiology and immediately to an ENT where I received prompt intratympanic steroid injections into my right ear (a series of three) and 16 sessions of hyperbaric oxygen therapy.
Hyperbaric oxygen therapy was very challenging for me because I do not like confined spaces. Being in a chamber for two hours every day, for five days a week and for a month, took a lot of courage and strength but I did it, despite little fluctuations but no lasting improvement.
So while I experienced very subtle periods of slight improvement and then decline, my hearing loss remains in the moderate to severe hearing loss range for my right ear and severe to profound loss in my left. It has been nearly a year now and there are still no medical reasons why this has occurred.
All the testing has ruled out tumors, auto-immune conditions, or cochlear abnormalities. Again, I have been diagnosed with idiopathic sudden sensorineural hearing loss. I currently wear bilateral hearing aids, Starkey Genesis.
I remain positive and hopeful and I believe there must be more learning for me given this experience again. I would like to help others, utilizing my experience and authenticity and creative expression, while also helping myself feel less isolated, less lonely, and less separate from others. I am in my late 50s but still very healthy and vibrant and I do believe that healing is possible and that the mind/body/spirit combination is reliable.
Here is advice that I have found helpful:
Share with family and close friends how you are feeling (fear, discomfort, aloneness, separate from), otherwise they have no idea how challenging this condition is. (We appear to be physically fine.)
Ask for what you need that does help. For example, I let others know that looking at me while talking to me is helpful, and that speaking more slowly (not yelling) is important. If I don’t hear my name, gently touch my arm or shoulder.
Take time for yourself in settings that help you feel most connected to yourself. For me, getting out in nature is a reprieve, whether it be taking a walk or just sitting on a bench noticing the surroundings. Or taking a breath with the sunset or sunrise.
Consider the passions and things you most love to do but may have been too busy recently to do. Take a trip to see the ocean, write in a journal, read, have lunch with a treasured friend, be creative or expressive (draw, paint, write, play).
Seek alternative therapies if they resonate with you such as acupuncture, massage, or energy healing. I always feel like even if it doesn’t help immediately, I am doing something healthy for my body.
Meditation has helped me. I sit with myself in the silence of what is and just be with myself to befriend the stillness instead of fear it. There is much power and strength in the quiet and I believe it can help us listen more closely to the most intuitive parts of wisdom within ourselves. This takes time, but even a step in that direction may be surprisingly helpful.
It really has been quite the journey and the experience for me, and I know there is great learning in it as well as a deeper compassion for others that experience hearing loss of any kind. I continue to adapt and stay hopeful, positive and brave.
Michele Susan Brown lives in California. For more, see her website at michelesusanbrown.com and her Instagram @michelesusanbrown.
I wanted to create a story that not only celebrated the beauty of differences but also conveyed the importance of empathy and understanding. My heart was set on crafting a tale that could empower children with hearing loss while also educating their peers about the significance of inclusivity.