Grief is a sacred journey

When Listening Heals

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What was that noise?

What was that noise?

“I have Meniere’s Disease,” I told the receptionist when I called Strong Audiology in Rochester, NY a year ago. “I used to be your patient, but recently I’ve seen someone closer to home. I’m a little desperate. I need an appointment with the best, most experienced audiologist you have.”

“Oh,” she said. “Please hold a moment.”

“I’ll give you an appointment with Dr. Orlando, Head of Audiology,” she said when she got back on the phone.

Bullseye! Sometimes it works to plead on behalf of our bodies the way we plead for a sick child.

DSC00910 - CopyDr. Orlando was round and smooth, a man who looked like he enjoyed a glass of red wine with his pasta. He looked in my ears with an otoscope, gave me a hearing test, and checked over my hearing aids.

“Your hearing aids don’t need reprogramming,” he said, “but that earbud is too small.”

He changed the tiny plastic cone that nestles into the ear canal. I went from 40% word comprehension to 80% in one minute. Magic.

“You mean I came all the way to Rochester to see a doctor with your experience to have the earbud changed?” I teased.

DSC04129“Sometimes in a complicated case, I look for the simplest thing first,” he said.

Last week, I hoped for a second miracle in my struggles with the auditory world. Dr. O helped me once. Why not twice?

The history update and hearing tests were done by his attentive intern. Dr. O hovered in the background. The two of them spoke for a few minutes on the other side of the soundproof glass before joining me in the testing room. I sat in the patient chair. Dr. O gestured toward the only other adult chair to let the intern know she should sit there. He curled into a sturdy child-sized wooden chair meant for young patients.

I looked down on him. He looked up at me. An unusual geometry when talking to a doctor.

“Your hearing aids don’t need adjustment. You detect the same volumes as last year. Unfortunately, your word comprehension is worse, down to around 70%.”

DSC01984The word comprehension test is a recorded voice speaking one syllable words, so I can’t assist my ears with lip reading. Without lip reading, I can’t understand many simple, clearly spoken words even when there is no background noise. In complex hearing situations like a restaurant or on a city street, I’m lost.

“Yes,” I said. “Sound is more distorted. That’s why I’m here.”

“There is nothing I can do to help you,” he said. He held his hands up to show they were empty and gave an apologetic shrug. I felt stricken. Stabbed.

“Nothing?”

“You can increase volume in your hearing aids with the control buttons you have, but volume doesn’t help with comprehension, does it?”

“No,” I said. “More volume makes me dizzy.” Vertigo is one of the unpleasant symptoms of Meniere’s Disease.

“Inner ear damage continues to distort everything you hear. It’s getting worse,” he said.

DSC00911“Are there better hearing aids,” I asked, imagining writing a check for $6000.

“Yes, there are. Yours are three years old. Unfortunately the technological improvements won’t help you. They can’t address this distortion.”

Tears pooled in my eyes. Nothing. Nothing.

Then Dr O said, “You’re a writer, aren’t you? What do you write about?” Instead of hustling me out the door, he asked “What’s the name of your book? Do you teach?” I mentioned the dreams, mythology, and grief workshop I’ll co-lead March 11-12 for the C.G. Jung Society in Sarasota, Florida.

He looked straight at me so I could read his lips. I heard every word.

I felt damaged and helpless, but he listened to my answers as though I were the most fascinating person in the world. Despite his inability to fix my hearing, he wanted to know what mattered to me. He assured me I’d be fine with the use of microphones.

He looked up into my eyes from his low chair.”How fortunate that you’re a writer,” he said.

Although he couldn’t heal my body, he still took time to speak to my soul.

DSC04040

A healing visit to Seneca Lake on my way home from Rochester

***

Have you had physical losses that force you to change the way you live and think of yourself? Despite media denial and those cheery AARP covers, aging and loss are part of being human. My hearing loss began twenty years ago. It stabilized before my husband was diagnosed with terminal cancer and remained stable for nearly five years after his death for those who wonder if it was associated with grief. For other articles about my adventures with hearing, see Whispers and Roars: Surviving the Turmoil of Tinnitus and I Want to Understand You.

 

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38 Comments
  1. “How fortunate that you’re a writer.” Yes, but. It’s not so great when you love the outdoors because you can’t hear the quiet sounds. Thank you for this, Elaine.

    • Hearing loss is a drag, but without advanced hearing aid technology, I’d truly be a mess. The sentence you quote was in the context of my love of communicating through writing as opposed to being a musician or a sound engineer. Fortunately, with the help of hearing aids, I can still enjoy many simple sounds of nature such as bird calls, peepers, and coyote howls. They aren’t what they used to be, but they are still there. As you can tell from my constant photos, I’ve become more visual and less auditory by necessity. The art of hearing with our eyes.

  2. We visited with Jim and Janice this past weekend. They are an inspiration as you are. You just keep moving on, no words of self pity. When it looks like Jim can’t walk another step, he is off to NYC with friends. You are off to give a talk!
    You are my inspiration since depression has always been my battle. Thanks for all you do

    • Hi Patt. I heard you were visiting my Massachusetts family. I hope you got to the beach and saw big birds on the river. Yes, my brother is a trooper, even as he becomes more fatigued and frail. He and I carry a willful gene passed along from our mother–and I married a man who had that same kind of will. My mom wasn’t cheerful though. Just willful. These men are advocates of the “glass half full school,” so I try to learn from them. May all be well with you. I’m grateful for the many healing modes you know.

  3. You are a trailblazer, my friend. I’m so inspired by the way you handle this challenge and your openness and honesty about expressing your feelings. My hearing is gradually diminishing, though not enough yet that I’ve had to wear a hearing aid, as many of my contemporaries are now. But when my time comes I know that your example will comfort and empower me to face the inevitable! Blessings, Jeanie

    • We are trailblazers when we have to be, aren’t we? I had never heard of Meniere’s Disease and no one in my family suffered from hearing loss. My hearing hasn’t changed much since I saw you last year, but I’m aware of every small difference. Deafness hasn’t stopped me from doing what feels essential, although it makes me work harder. My dreams rarely address my hearing struggles which I find interesting.

      Modern hearing aids are nearly invisible computers that have worked well for me over sixteen years. Few people have the added issues and sound distortion of Meniere’s Disease. If hearing loss is about volume at any pitch as mine was in the beginning, hearing aids are wonderful. And may you never need them. Thank you, Jeanie.

  4. To this reader, you are a writer with 100 % word comprehension and a heart and soul. I feel it anew each time you post. Still, I am sorry for the doctor’s diagnosis and the pain it entails.

    I am witness to my husband’s accelerating hearing loss. Sometimes I form my hands into a little megaphone so I can be heard around the corner. He’s a very poor lip reader. Have I had physical losses that force me to change the way I think of myself? Yes, indeed. I think of them whenever I get in/out of a car or sit at a computer too long. Sometimes I think I may be developing fibromyalgia. Fortunately, I have my yearly physical on Monday. I must remember to ask the doctor too about the lump on my head: I hope it’s only a sebaceous cyst.

    I love the way you described Dr. Orlando as round and smooth. His name even begins and ends with rounded O’s.

    • Thank you, Marian. In the myth of Inanna, compassion for suffering saves the day and paves the way for rebirth. I’m more and more aware of the beneficent power of our smallest compassionate gesture or words.

      I am a good lip reader, but I’m looking for a class. There are some online, so I need to get recommendations about which one. Oh, those bumps on our heads and those aches in our hips. I have a sebaceous cyst exactly where my mother had one. I don’t know about you, but I sit too much. Exercise and stretching balance these keyboard hours, but not enough. I’m trying to get used to a standing work station with my laptop for part of my computer time. It works better for writing than reading. And, yes, it was easy to remember Dr. Orlando’s name. I wanted to take a photo, but decided not to break the magic of the moment by asking for that. Then I was sorry I hadn’t–but I painted the moment with words.

      • The word picture was superb – just what I’ve learned to expect from you. About exercise – I’d be lost without Pilates and PowerPump. A standing work station would round things out even more.

        • Those are good exercise things to do, Marian. I’m tromping in light snow and doing yoga. I also lift weights, but hours and hours of sitting. So far the standing work station feels like a hassle, but I’ll get used to using it more.

  5. Elaine, this was a beautiful story. I’m sorry about your difficulty with your hearing, but the compassion in this story reminded me of the post I did last week about my own doctors. Sometimes there isn’t a cure, but there’s a kindness that comes with that voice of authority. It doesn’t solve the problem, just makes it a bit easier to digest. <3

    • Thank you, Debby. I read that post of yours but didn’t comment. It’s always hard to find caring doctors when traveling. And I’m glad it all turned out to be OK for now. Instead of commenting, I realized I’d missed something and flew off to read about girlpower. I’ll visit again.

      • I see you managed to navigate around and get to both posts. Thanks for reading and commenting Elaine. I too seem to reply to your replies here when I leave comment because for some reason I don’t get notified of comments from here, only for a new post, so I usually pop by a previous blog when I come to read a new one of yours to read your follow up comments. 🙂

        • Hmmm… Isn’t there a button on my site where people can click to receive comments? If there isn’t, I need to tell my web guy to change that. Thanks for checking comments.
          I’m trying to spend less time on social media and more time reading and planning the March lecture/workshop I’m co-leading in Florida on dreams, mythology, and grief. Preparing for the workshop helps me understand where my writing wants to go. I’m trying not to push or worry. Just do the work and trust.

  6. Another beautiful price Elaine. A difficult situation…yes! I am so glad the doc met your soul. And it was very good to be with you recently.
    Much love
    Lori

    • Thank you, dear Lori. What are we going to do? Life’s lessons often come with a pounding. I loved being with you. We’ll do it again. I’ll email. With love to you as you learn to life in a new terrain.

  7. “Although he couldn’t heal my body, he still took time to speak to my soul.”
    Dear Elaine, I am inhaling these beautiful, healing words. Thank you so much for breaking the silence on deafness, you are such an inspirational woman. You teach us all! For surely you were born to write. You with your poet’s pen and singing eyes! You cannot fool this poet, or no! Your outer ears may no longer hear so well dear lady but oh my goddess how finely-tuned both your inner ears are!

    For being a writer, a true wordsmith, is to dance, and spiral with life itself. Inner listening, deeply needed! I love how your words enhance and turn up the volume of my life! They do say that when one of our inborn senses declines recompense, as balance, is given in other areas. I wonder if you have unearthed this magic for yourself, and worked out in which other areas have you been fine-tuned.

    I whooped in delight as I read the title to this post ‘When Listening Heals’ pitch perfect, and exquisitely so! Only a poet could bring forth such divine, inspirational words. Have you considered giving ‘the roar’ a voice by use of active imagination – forget perfection, why not write a poem from its perspective, see what the roar has to say … listen to yourself, tune in. Slip off your shoes and listen with your whole body. Listen to the symphony of the soul of love. Blessings always, Deborah.

    • Dear Deborah, you make me blush. I wrote the first draft of this in a writing class a few days after visiting the doctor. Until writing the story, I hadn’t fully realized the healing impact of his interest and his physical position. Another writer there talked about the difference between listening (as in soul listening, depth listening, inner listening, dream listening) vs hearing to orient ourselves in our environment or hearing for individual sounds. I know that losing my physical hearing has increased my inner listening and my ability to listen through my eyes. I watch the world for cues. With Meniere’s there is also a change in sensation or proprioception, so I have to pay more attention to where my body is in the world. It doesn’t stop me from doing anything, but demands keener attention to body. It’s also made me comfortable with solitude in a new way.

      When the inner noise gets very loud (it varies in volume, pitch, sounds), I lie on my back (shoeless) and surrender to all of it. I listen, but haven’t heard words, but I’ll listen for them now. The noise is inarticulate, but I haven’t asked it to speak. Why not? Active imagination has been a healing tool for me for many years, but instead of giving words to Menieres, I’ve let the frustrated, angry, willful, or defeated me speak. Response often comes from inner Divine Mother. Does the roar have words? I have’t heard any but maybe I need to ask. Thanks for leading me here.

  8. Mark has a point. However, listening to silence can be healing, especially when the mind is at odds with itself.

    • You’re right, Joan. Thank you for your comment. I rarely experience silence because my inner ears generate noise on their own. Sometimes it’s droning or humming or roaring or crackling, but sometimes they amplify my heartbeat and that’s the loudest sound I hear. Sometimes, especially in the morning after deep sleep, there is silence. I lie in early morning light under my blankets and soak it in. A meditation on silence.

  9. I could feel your disappointment and understand a small bit about how it is to lose sounds. So many of my friends and family are going through this now. For me, it’s my eyes. I’m losing visual accuity, not a great thing for a visual artist, a photoshopper, and lone hiker. Supposedly I won’t lose all my sight. But so many of the things I love contribute to the condition: sun, wine, chocolate, extreme temperatures, spicy foods, exercise,saunas, and more. You’re right. This aging thing sucks.

    • Thanks for feeling with me, Robin. Losing vision (Vic’s mom is about 90% blind with glaucoma and macular degeneration so I’m familiar with the difficulties of that) seems even more difficult than losing words, if we dare to put an order on such things. I’m doing all I can. You probably are, too. But then it’s important for me to learn to accept, admit, and forget about fixing. Let’s keep writing though. Sending gentle healing to your eyes.

  10. Thank you Elaine for this post and being so honest and revealing about hearing loss and Meniere’s. I am 100% deaf in my left ear and wear a hearing aid in my right ear to help amplify sound. It is difficult being in social surroundings but I’ve certainly found that I do listen better when in a less busy space. And I also think that it helps me be aware of other senses and perhaps more empathetic and sympathetic towards others with disabilities of one kind or another, as you say, an inner listening … Beethoven was deaf yet continued creative masterpieces. Hellen Keller was blind – the list is long and inspirational.

    I remember a car accident from a little while back when my right hand was badly damaged and I was unable to use it for many weeks, running into months – what!!!!! Well, I learned to use my left hand; I learned patience (I’m the least patient person); I learned a bit more about the impermanence of everything; and also that people really and truly are willing to help and that I had to learn to accept this, from my position of stubbornness ..

    Dr O is a special man –

    • Susan, you told me about your hearing loss and your husband’s occupation. Your situation sounds as severe as mine. Do you use any sign language or are you a lip reader? We can be grateful that we are writers, yes? You must share my symptom of having no idea what direction a sound is coming from. When I hear a loud noise in the woods, I look to Willow to tell me what direction it comes from. She’s my personal untrained service dog. I just look in the direction where she looks. Your second paragraph resonates with me–stubbornness, insistence on independence (I make my sons tired with this insistence), impatience, wanting to get on with it… And sometimes we can’t. This setback brings in the reality of impermanence (for me, not just everybody and everything else) and helps me figure out what matters in this life. Or at least I’m asking the questions with a certain fierceness.

      Yes, Dr. O is a special healing man.

      • Hi Elaine – no I don’t use sign language as usually understood but it is 2nd nature to read in other ways! I know that my sons don’t care too much about repeating things and my elder son speaks in a particular tone that makes it’s difficult for me – by tone I mean that he speaks quite softly and it’s just beneath my radar even face to face. My husband agrees with me –

        Sometimes if the TV is on but not the sound I watch them speaking to try to ascertain what they’re saying – just a bit of mental gymnastics on my side.

        I’ll be home this weekend and plan to see audiologist again next week to see about a fancier hearing aid after having having various tests done by my husband –

        • Oh, I know those quiet male voices–the ones they’ve cultivated and their mamas encouraged, but the ones that don’t work for us now. I need to ask about the many online lip-reading classes and see if any are recommended. My hearing aids are essential tools. I have Oticons with every fancy gizmo for making telephones and various sorts of microphones possible. If you don’t have distortion of sound, then they are magic. Not magic anymore, but without them I’m completely lost. Travel safely. I wonder how those amaryllis are doing?

  11. Elaine, you express the disappointments and disabilities of aging with such grace and insight. I watched my husband lose his hearing and his eyesight over the years. Perhaps I could have been more patient and understanding then. Now that I’m going through the aging process myself, I see how loss is a part of it all. Mindfulness practice helps me to accept and let go–up to a point.

    Thank you for this post.

    • Thanks for your kind comment, Lynne. We’ve watched others fall apart and seen our own impatience. I have this ongoing situation with my mother-in-law who turns 100 this week. I know I am already difficult for my sons because of my fussy hearing. I don’t do well when they call with poor connections or from a noisy place, so the natural thing is for them to call less. I’m comfortable with solitude and interaction through writing in most cases or meeting friends for lunch or walks, but many I love live at a distance. Skype helps along with my many hearing gizmos, but I hate being a hassle for others. Yes, meditation practice helps the most.

  12. Elaine,
    As always what you write resonates with so many of us. The cancer I had tried to change me completely. It didn’t, but I did change. Other illness limits me physically and socially. But perseverance appears to be the key. The ‘Do it anyway’ behavior is just more fun, making our lives richer. I can rest the day after, or the week after as is the case sometimes.
    Thank you.
    I love you.
    Gayla

    • Cancer changed Vic radically, and because it was unrelenting, the changes kept going to the end. And of course my life was forever changed–but isn’t everyone’s changed by something?

      I have a similar philosophy with Meniere’s Disease. The line I love from the I Ching is “Perseverance furthers.” I notice how my body feels at the moment and decide whether or not the effort is worth the reward. Sometimes, even when I feel lousy, I take extra medicine and go for it. Sometimes I let things go.

      Sending you love, Gayla, and remembering you so fondly as a teenager in the 1970s. Life has been a surprise, hasn’t it?

  13. You always write well, Elaine, but this essay just sings. It’s like a taut string the reader can pluck. I especially loved this description:

    “I looked down on him. He looked up at me. An unusual geometry when talking to a doctor.”

    Have you ever thought of writing a novel? You do scenes and dialogue so well!

    As for signs of aging. I have some compressed vertebrae and the aches and pains that go with them. My yoga, weights, and walking keep them in check. But the inevitable is creeping up on me also. Have to remember to get out of my chair!

    • We spend far too much time in these chairs, Shirley. A modern hazard.
      I haven’t thought about writing a novel. I don’t seem to have the imagination required for fiction. I’m doing lots of reading, but I am still waiting for clarity about what comes next in my writing. And other things fill the spaces, including preparing for the workshop in March. I just spent two weeks focused on a new website for Vic. His old one was in a discontinued program (Frontpage, Microsoft’s first website program) and the articles were unshareable. Our sons and I felt it should be done, but it rested on me and the man who designed and set up my website to do it. It was a mess–not because it was a mess when high-tech Vic created it, but because it was old-fashioned. I’m writing a few pieces that will be used to introduce some parts of the website such as the StoryCorps interview I did of him and a CD of him teaching with the Dalai Lama 5 weeks before he died. As you can imagine, this was an emotionally loaded project. The many notebooks full of his slides still wait for me.

      Tomorrow is Vic’s mom’s 100th birthday party, so I’m writing about that and my evolving relationship with her as she requires more help from health aids and loses more memory and mobility. We will see what shakes out of all these projects. Something always does.

  14. Ha! I knew you were a shaman. You can’t fool me.

  15. Once again your words touch my heart as they paint a picture, and I feel as though I was there with you in Dr. O’s office. I’m sorry the outcome wasn’t better, but thankful you felt cared for in the good hands of a compassionate physician. And how nice the intern was there to witness that interaction. The medical community needs more just like Dr. Orlando, and the importance of treating a patient like a human being needs to be stressed from the day students step foot into their first med school class. Sending you love, my friend.

    • I’m also sorry about the outcome. It’s hard not to sink into a big hole of despair. I went to an art opening on Friday and told my friends I couldn’t talk with them in the noise, but came to see the artwork. A friend and one of the artists who has had hearing problems all her life walked around with me, giving me a tour of the paintings. By the end of the evening, many people had left and I found quiet corners where I could hear people. This week I’ll send my article to Dr. Orlando as a thank you. And thank you for your affirming and loving comments, Ann. Be well and take good care of yourself.

  16. I’m so sorry this happened to you, Elaine. Losing the ability to be on the receiving end of oral communication is a great loss; there is no way around it. And like other people pointed out, hearing has to do with more than just communication. There’s nature, too. How I would miss hearing birdsong in the spring.

    But at the same time I’m so thankful for the written word and the ability to communicate with you that way. Thanks for your wonderful posts and your interaction with your blog family.

    • I am happy to report that I can hear bird songs in the quiet woods. Not nearly as well as I used to, but the birds, peeperfrogs, and crickets come through when I wear hearing aids and there is no background noise. The simpler the sound, the easier it is for me to hear. Human voices in restaurants or in movies are not simple. When my hearing was good, I hardly noticed the incredible job the ears do with complex sounds. I feel lucky to be a writer and not a singer. I feel lucky to have good social media friends who keep me connected to life. I feel lucky to have local friends and family who are, so far, willing to put up with my demands. No music at Christmas? That’s asking a lot.

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