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.

18 thoughts on “Waking Without Music

  1. Sorry to hear of this… Sending u both love abd hugs Peter

    On Wed, Oct 17, 2018, 6:37 PM A Small Case Across India wrote:

    > rwiggins posted: “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 inje” >

    Liked by 1 person

  2. Hi Bobbi….Steve and I had heard about this and have been thinking of you with much love. This is quite a test. I’m happy to see you are now able to get back to your eloquent writing. I hope that helps. We’d love to see you and Gerard whenever you are up to that. xoxox

    Liked by 1 person

  3. Oh dear, dear Bobbi… even those of us who hear, sometimes don’t ‘get it’. Your writing make this so very clear. I hold you in my heart where words are not needed. Much love to you both.

    Liked by 1 person

  4. Dear Bobby,

    That is indeed shocking news – and you are quite amazing for apparently being so up-beat about it. My brother is increasingly deaf and I know how isolating it can be quite apart from the exhaustion of trying to communicate as well as deal with the physical symptoms. I am so sorry.

    And also sorry if it means you might not get to India. (Isn’t flying supposed to help some ear conditions?)

    We are well, busy helping out with two little grandsons as well as everything else – but it’s a good busyness and we are very aware of our good fortune. And it’s a sort of antidote to the horror that is Brexit… except it’s their future…

    We salute your stoicism!

    With love to you both,

    Priscilla and Anthony

    Sent from my iPhone

    >

    Liked by 1 person

  5. Hi Roberta,

    Thank you for making sure I rec’d this msg with update on things. I am on your dist list so did receive before. I am very sorry to hear how definitive your hearing loss seems to be. I think not knowing it’s cause makes the loss even harder.

    Shortly after getting the msg I bumped into a friend (we usher at the MFA together) who has hearing loss. He lost his from the measles (when young) and only has partial hearing in one ear. I was thinking he might be able to advise you and provide some support. I would be happy to connect you via email.

    I am leaving on a 3 week trip but will be checking email regularly. Feel free to teach out to me. O/w I will see you at the Y gym after Nov 7. We will all adjust with you and be there for you.

    Very best,

    Debbie

    Ps. That is very true re Trump. At least you ate not subjected to that.

    Sent from my iPhone

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    • Thank you for your kind thoughts. I”ll miss you at the Y but wish you a safe and enjoyable trip. If your friend would be willing to connect with me, I”m sure his advice would be helpful. I’m plugging away at Tai Chi. It feels right I though don’t find it easy. The patient teacher is providing a true service. See you after Nov 7.

      Like

  6. What a bad news G…

    I hope things soon get better

    Theo

    ________________________________ Van: A Small Case Across India Verzonden: woensdag 17 oktober 2018 15:07 Aan: theotukker@hotmail.com Onderwerp: [New post] Waking up Without Music

    rwiggins posted: “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 inje”

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  7. Bobbi-I so admire your courage and also your sense of possibilities to offset what could be utter devastation for some (but then consider Beethoven)…Your putting your thoughts out “here” for those who love you is a gift and I thank you for stepping out there, for all of us…..

    Liked by 1 person

  8. Dear Bobbie, I was expecting to hear your hearing had been sorted once you returned to the States. I was not expecting to hear that now both ears are affected. How very miserable for you, such bad luck. Is there any hope of hearing returning as mysteriously as it went? Having to put up with tinnitus as well, adding insult to injury. I had just been wondering if we were going to be able to meet up in India again next year, as we are in the vague planning stages. We have a flight to Kochi early Jan so we can go to Palani for a festival, then Kannur for Theyyams and on up to Goa end of Jan. Then not sure…. But doesn’t look like you’ll be heading over? We’re both fine, soon to do some Christmas markets, and hope Gerard is fine too and being a good support to you? Much love to you, and courage for this challenging time. Xx Sandhya xx

    Sent from my iPad

    >

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    • So good to hear from you. We’re waiting on India a bit longer to see if I get a stronger to handle the traveling etc. The thought of spending the winter in Boston is daunting. And we ‘d miss seeing both of you of course. You didn’t mention Varanasi? If we go we”d be there for Shivrati on Jan 27th. Later this year….I think that would be the hardest part for me – I couldn’t hear the music, but I could do yoga! Yes, Gerard’s been truly amazing. Good luck with the Christmas markets. Love you both.

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  9. Dear Bobbie and Gerard. Thank you for sharing your story. Marybeth and Charlie told me all that you are going through, and I want to send you more love and prayers. We sometimes have to walk through the most painful, disorienting experiences, sometimes emotional and sometimes physical. I have walked through my own emotional turmoil, and can only understand your pain from the vantage point of my own dealings with physical pain. The loss of your hearing is such an invisible experience, as you say in your blog. My mom is experiencing the slow but significant loss many older people experience and I sometimes have impatience about her disability. That makes me feel bad that I am so self centered that I’m not always seeing the loss through her eyes, or ears!! So, I pray that you will find some relief over time, that you will trust and rely on Master to get you through to a better place. Wishing you well, ole Friends. Much love, Patti

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