Waking without Music

Dr. Siegel stared earnestly into my face and over-annunciated his words for my benefit. “I want to do everything possible to get some hearing back.” His eyes were compassionate but also now reflected the beginning of despair. After four dexamethasone injections through my eardrum and the maximum dose of prednisone (60 mg) every day for two weeks, there had been no improvement since I’d woken up on July 1 with a severe hearing loss in my right ear. Six months earlier in India, the same thing had happened to my left ear. We had just arrived in a remote beach town in the south where there were no medical resources. Eventually, we went to a prestigious Indian hospital in Rishikesh where a doctor diagnosed severe hearing loss, too late for steroids, the only known treatment and that has to be administered within 72 hours. Fortunately, at that time the hearing in my right ear was very good. Now my hearing had been reduced to about 10% with very low word recognition.

Sudden Sensorineural hearing loss (SSNHL) is a rare infliction to have in one ear but both ears…the doctor had only seen two other patients in his whole career. In his desperation, Dr. Siegel strongly suggested doubling up on the steroid therapy. “If you were my wife this is the treatment I would prescribe.” He continued saying, there’s about a 50% chance of return of SOME hearing.

We were hopeful that maybe we could save the hearing this time. I felt surprisingly calm as all of this was being discussed. In hindsight, the reality hadn’t set in. At that moment, I could look at the hearing loss to be more than just a disability. Perhaps I could learn something that had previously been unavailable to me.

The calm did not last. The steroids put me into a toxic state of high anxiety. After the fact, everyone agreed it was too much for me. The effect would take a couple of months or more to wear off. I can now testify that ‘steroid psychosis’ is real and steroids should be used with extreme caution. Certain people just cannot tolerate them. Unable to sleep, I felt constantly wound up and found it hard to settle on anything, unable to concentrate even on reading, stressed from responding to all the emails I received.

We refused the last booster shot because there’d been no improvement. Dr. Siegel sighed, gave me a compassionate look and left my life. He’d tried and it didn’t work. Now it was up to others to try and diagnose why I’d lost my hearing After meeting with various specialists and numerous tests there’s still no conclusive answers. No CT scan, MRI or Xray can provide visibility into the ear to make a diagnosis. At this point, my neurologist is the only one showing any interest in trying to diagnose the cause but not with any hope of returning my hearing. I’ve also tried acupuncture and Chinese medicine but again no improvement.

I feel locked in a noisy wind tunnel, sounds coming but from far away, my voice vibrates in my head. Compounded with the hearing loss is acute tinnitus…a roaring that is at times overwhelming and aggravated by background noise and also by stress. I can communicate one on one if I’m close to the person and the background is quiet…no running water, kettle boiling. A group setting is almost impossible. Unlike gradual hearing loss as part of aging, SSNHL is in the lower decibels…it’s easier for me to hear higher sounds, women’s voices than men’s. Gerard’s is a strange exception, perhaps because it is so familiar to me. Music has faded away to a thin single sound or a background rumble. I cannot hear phone conversations (Gerard who is now my personal secretary, reminds me that I never liked talking on the phone anyway). I’m getting better at reading closed captions and trying to master lip reading. I’ve also learned that severe hearing loss or even total deafness is not given a lot of attention or resources. It’s not officially treated as a disability like blindness and there is little financial aid for hearing aids, cochlear implants, etc. SSNHL specifically has been barely researched because it’s so rare.

Our plans for India this winter are presently on hold. As the toxic effect of the steroids diminishes, I’m now beginning to address the new circumstance. Growing up with a father blinded by diabetes and knowing his isolation, I’m grateful that I haven’t lost my sight. There is an upside side. As Howard Anderson, the founder of the Yankee Group where I worked for many years, noted, “Well you don’t have to listen to Donald Trump anymore!” I’m spared from hearing the chatter from noisy neighbors across the alley on a hot summer’s night. Meditation helps to still my turbulent mind and quiet the tinnitus, and I’m adding Tai Chi to the yoga and pilates classes at the YMCA, and grateful to be back on my bicycle, with more caution. As advised by a deaf therapist whose counsel I had the good fortune to receive, I take walks ‘observing rather than thinking’. When I get outside my head, my sight is enhanced. Life still has joy in it. The outpouring of concern from friends has been overwhelming…..and most of all the unwavering support and love of my husband; I’m not alone.

11 thoughts on “Waking without Music

  1. Hey
    Beautifully written. I am so glad to hear you are adjusting to the situation. The image of you back on your bike was so encouraging. It warmed my hear.
    Much love and good wishes always.

    Liked by 1 person

  2. Yes, a very moving account of your life-changing experience. This is not a change which any of us would hope to experience, but it is so good that you can see silver linings in this dark cloud. You are blessed with very close friends and a wonderful husband. By all means, you will never be alone. And my hope is that you will get back to India again at some point. I’ll hope to see you soon!

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  3. Oh Bobby , such a good clarification of your situation now. I’m grateful to know the suggestion for as you walk observe not think. Thank you 😊🌟.

    Liked by 1 person

  4. Some day Doctors will look at a scan or in ones ear and say”I see karma, unusual but karma ”. Just trying to humorous here as we too are on the medical roller coaster. So sorry you are going through this. Sounds like Judy’s son (left out his name for privacy but you know the man) has a similar case! Yipes!

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    • The humour was right on! Yes, we all need it at this time with the karmas raining down. Yes, we’ve talked with Judy. I think he only has loss in one ear but he is very bothered by tinnitus. Love

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  5. Hello – what a double whammy: you seem to have been able to respond to it remarkably philosophically. Are there any hearing aid options? Having said that, Gordon’s aids don’t seem to be very effective, and it sounds as if he has a lot more residual hearing than you. Full marks for optimising all the strategies open to you – I think it’s amazing that meditation can actually reduce the tinnitus. And yoga also seems very powerful: Sarah swears by it.
    I’m sorry not to have been in touch with a proper catch up email: I promise I will before Christmas. But some good news to pass on now: Ruth & Jonas are expecting a baby in April, so I will become a granny! You will have heard Sally’s news too I expect – it’s good to know that the next generation is powering through.
    So take care, say hello to Gerard, and keep up the positive approach.
    Talk soon, love Marion

    Sent from my iPhone

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  6. Hi Bobby, Thanks so much for sharing this and bringing us all up to date. Even though I had heard you had lost most of your hearing, I had been thinking about you a lot and wondering about the details. Even though there’s not exactly good news, it’s still a relief for me to know what’s going on…. and to read it in such eloquent prose! I hope to see you soon. I send my love. -Rory

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