Grief is a sacred journey

I Want to Understand You: Hearing Loss, Grit and Grief

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DSC05747It’s all a misunderstanding. I mean, I misunderstood. I’m sorry, I can’t hear you. I can’t always make sense of the noisy world. I feel far away and a little out of focus. Much of my hearing is gone.

Hearing loss began twenty years ago and progressed slowly. One hearing aid, then two, then higher tech models. I lost the pleasure of music and movie soundtracks years ago, but could hear your words.

Hearing stabilized during my husband Vic’s illness and didn’t change after his death, but a roaring began eighteen months ago. The diagnosis is Meniere’s Disease. Dizziness, tinnitus, and rapid loss of hearing in what had been my good ear. I grieve for this loss just as I grieve for my husband. In both cases, I deal with it, day by day, minute by minute.

I can’t hear you? What? Sorry, I missed that. Will you repeat that, please? Huh? How many ways can I say I can’t hear you? I’m developing my repertoire.

The comfort of Nature's hush

The comfort of Nature’s hush

I know how to fake it, smile when others smile and look interested when I can’t understand, but these are isolation tactics. Instead, I tell people about my hearing struggles because deafness isn’t obvious and hearing aides are nearly invisible. I’m honest despite the irritated part of me that thinks I should be flawless and perfect.

I miss my love affair with sound. I counted on my ears the way we count on our bodies until they let us down, but I refuse to retire into sunset seclusion. I look for interesting opportunities and challenges. I lead bereavement groups and give phone and radio interviews using my high tech Oticon audio equipment. I will give more workshops and lectures this fall.

DSC05755I’m inspired by Evelyn Glennie, a deaf percussionist who gave a TED talk about listening with our whole body. She performs in bare feet so she can feel the sound. If she can be a percussionist after losing her hearing at twelve, I can adapt.

My book baby Leaning into Love: A Spiritual Journey through Grief meets the world in October. She counts on me to introduce her and show her around. She counts on a persistent woman with a disability.

“I’m can’t hear well in noisy situations,” I told the TEDx Chemung River organizer in May. We had finished a one-hour interview as part of the selection process. I did fine face-to-face, reading body language and lips and listening in a room with modest background noise. I mentioned my hearing loss in my application, but needed to remind her. I can fool people. I don’t want to pretend.

Simple grief ritual by Liz McFarlane Mansfield

Simple grief ritual by Liz McFarlane Mansfield

“I won’t always hear what others say if there’s background noise. I’m helpless in certain situations, but I’ll do my best.”

“You can give a talk, can’t you?” She said smiling at me. It was a hypothetical question, not a promise.

“Yes,” I assured her. “I’m very good at speaking.” I laughed remembering how my dad called me Windy Wales as a kid because I was a talking machine.

“Then, it will be fine.”

ResizeImage-001Ten days ago, I received a letter of congratulations from TEDx Chemung River. I’ll talk about using ritual for meaning and support after loss. With the help of TEDx coaches and careful practice, I’ll be prepared for November 8, 2014 in Corning, New York. The warrior in me will work hard, listen carefully, hone her skills, and sometimes ask people to repeat themselves.

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What do you have to overcome to do what you want to do in the world? For other posts about my experience with hearing loss see Whispers and Roars: Surviving the Turmoil of Tinnitus and Hearing with Heart: Grieving for Lost Sound. Many interesting articles I found on the web discuss grieving for your own hearing or your child’s hearing loss and use familiar bereavement language.

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30 Comments
  1. Excellent, excellent article, dear Elaine. As I sit here with my L/ear closed of sound because of whatever it is that occurs in the ear when we get older and the hearing gone in my R/ear from a mastoid infection I suffered from swimming in my college days I wait patiently to see my ENT doctor for the third time this year. I so understand when someone’s hearing goes! Mine is temporary and once I step into my ENT doctor’s office he performs some magic and I’ll leave knowing that I will hear the birds sing again and the emergency cars blowing their horns. I am so sorry for what you are going through.

    • I’m glad to know your hearing will return to a better level, Anne. I can hear birds and crickets and enjoy them because I don’t have to understand their words and the melodies are simple–and I’m grateful. That’s my music now. My hearing and Meniere’s symptoms have been worse recently. Others who have it blame worsening symptoms on humid summer weather, so I hope I’ll also improve. It varies so much. It feels daring to write about this, although it’s a problem shared by many. We tend to keep quiet about it and suffer through, but I’m not good at pretending.Thanks for telling me a little of your situation, Anne. We aren’t the only ones.

  2. In addition to warrior, you are certainly Wonder Woman, Elaine. I can relate to everything you said above through the “ears” of my husband, Cliff. His hearing loss is profound, and I must adapt in many ways: facing him when I speak, not talking to him from another room, speaking slowly–a small price to pay for his presence, I know you will agree.

    You say, “I refuse to retire into sunset seclusion.” I say, “This is another way you have triumphed over loss.” I am so proud of you, Elaine. Your credentials are amazing: book in the queue for publication, public speaker, and more. Brava!

    • Thank you, Marian. I’m chugging ahead like the little engine that could. I feel for your husband. I remember thinking when they called my hearing loss moderate, “This is moderate? It’s terrible.” Now my loss is considered severe. I can’t imagine Cliff’s profound loss, but I may have to learn about that in the future. And yes, he’s worth it. We’re worth it. If I get to the profound loss level, I’ll consider a cochlear implant. I’m already exploring it but I’m not a candidate yet. People who know me well make the adjustment and others forget to help me or don’t know so I have to remind them. Thanks for your congratulations. I vacillate between being happy and thinking, “What have I done?”

  3. Elaine, I’m so excited for you! Congratulations on being chosen. I will love to see your Tedx talk. You explained the frustration well and, as always, I am sure others will be helped by what you shared in this post.
    P

    • Dancing in your congratulations, Patti. The TEDx process begins soon for a talk that is in November. They are serious and, like everyone else who will give a talk, I’ve been assigned a coach. I’ll learn a lot.
      I hope this post is helpful to others. It’s hard to share another loss, but that’s what life is.
      Ah, the problem of writing memoir. Honesty demanded.

  4. Elaine,

    Once again after reading one of your no-nonsense, tell-it-like-it-is posts,I am inspired to meet my own physical, and other, challenges head on with courage. You are the voice that tells us that it is okay to drop perfectionistic stances and just be who we are with as much grace as we can muster. Thank you for being such a fine mentor to me in this area.

    Big hugs,

    Jenna

    • Oh, Jenna, I’m a perfectionist, but my body won’t allow me to pretend. My mother was the Queen Mother of Perfectionism (along with many other Queen Mothers), so my job has been to stop demanding perfection of myself and just be me. I’m not good at it but keep practicing. Marion Woodman was a life-changing teacher about this. Still, writing this piece scared me. I read a Huffington Post blog by Rachel Thompson called “Writing What Scares You” and decided to go for it. Here’s the link to the article: http://www.huffingtonpost.com/rachel-thompson/writing-what-scares-you_b_5399276.html?utm_hp_ref=tw

  5. First, Congratulations Elaine! What a great accomplishment – you deserve it. Second, I appreciate your sharing what it is like for you. I find your courage awe – inspiring. Love, Shirley

    • Thank you for your encouraging words, Shirley. Just as I was emerging from the underworld of grief, my hearing became a big problem. So far, I find detours around the roadblocks. And I’m scared, but that doesn’t stop me. Thanks for taking time to comment. Love back your way, Elaine

  6. Elaine, you are so courageous! Congratulations on the TEDx talk–you will be amazing, I’m sure.

    I so much appreciate your honesty and vulnerability–being willing to write about what scares you. You inspire the rest of us.

    I get upset when I can’t hear my kids and grand kids on their cell phones clearly–hating to complain. I pretend too much to hear what people say. Yet I have no real hearing loss–just a bit from aging–nothing treatable yet.

    You sent an example I hope I’ll be able to follow.

    • I don’t feel so courageous, Lynne. I was afraid to post this blog, but if you read my response to Jenna a few comments back, I decided to write what scares me and I shared a link to an inspiring blog.

      I struggle with bad cell phone connections. My son just connected my cell phone at home to the DSL so I have a better connection from here. I keep scrambling for technological fixes and so far they help. I hope you never need them, but aging seems to bring more losses, so we all have our own to juggle.

  7. Elaine – I feel so lucky to have met you on Twitter! Thank you for reminding us that if we can step out of our comfort zone and take imperfect risks, it is never too late to launch! My grandmother was severely deaf by age 40 and having been a business woman, she reinvented herself and qualified to teach lip-reading, which she did until she was in her mid seventies. She was 94 when she died and her brain was still very sharp.
    I am looking forward to your book release and TEDx Talk. Both are amazing accomplishments. Gilly

    • Thanks for taking time to read and comment, Gilly. I’m also glad I found you and your wise writing on Twitter. Thank you for your constant kindness and insight. Nice to hear a little of your grandmother’s story. There has been no deafness in my family, so I’m surprised by it–but life is full of surprises. I’ve become an excellent lip-reader, but would likely benefit from lessons. I have to look into that.

      I love writing and enjoy social media because it’s the best way for me to communicate without stress.
      with gratitude,
      Elaine

  8. You may not feel courageous, dear Elaine, but your behavior proves otherwise. As you know, I share some of your difficulties with hearing loss, though the cause of mine is different from yours. Still, the effects are very similar. It is truly a significant loss, and you handle yours with such dignity and grace. I chuckled at your “scrambling for technological fixes.” I have arthritis in my hands and wrists, and I think I have every gadget known to man to help with opening cans and jars ~ most of which don’t help very much! Who said growing older is not for sissies?!
    I am so grateful for your bravery, my friend. Your writing is priceless, and you inspire me. ♥

    • We’ll go with the definition that a brave person is someone who is afraid but does it anyway. Yes, the effects of hearing loss are the same no matter what the cause. I’m sorry you also struggle with arthritis and assume this makes computer use difficult. I’m spared so far. I try to enjoy all the goodness of life I can enjoy and get around the roadblocks when I can. What else can we do? When my family visited Mexico in the late 1980s, we learned that speed bumps were called topes. When we returned home, a friend asked our youngest son what he learned in Mexico. He said, “Life is full of topes.” That became a cherished family motto.
      Thank you for inspiring me, Marty. I’m grateful.

  9. Elaine, I am so excited for you !!

    Congrat’s on the TEDx talk–you will be amazing !! and I can hardly wait to hear it…

    I love your article, so honest and truthful. Thank you for sharing and not being afraid of being vulnerable. I admire that so much in people.

    Elaine you inspire us all !! thank you so much …
    hugs XXOO Jean

    • Of course, I am afraid to show vulnerability, Jean. I was nervous about posting this blog. I want to be strong and have it together, but I feel dishonest writing about life without sharing the big change caused recently by hearing loss. I’ve wondered if my body is telling me to go in a cave and meditate–but when I ask deeply what I want and need to do, that’s not it. (Those meditation cushions are a constant in my daily life and won’t go anywhere, but I don’t want them to be my whole life.)
      Thanks for your encouraging words and kind comment. Thankfully, we inspire each other.
      Warmly, Elaine

  10. I want to be there for that Ted Talk, Elaine. Whhen I read your articles on hearing loss I listen with two different ears (is this a pun?). First there is the young girl in me, playing guitar and singing LOUD for my father who wants desperately to hear his daughter but will not share that he is losing his hearing. Then there is the current me. Too often I find myself missing parts of the conversation. I turn the volumes up of cell phones and TVs. I’m just beginning to accept that hearing loss is in my future if it isn’t already affecting my life. And I’m so aware of people spending big bucks on devices and not finding satisfaction or improvement. You’d think that with all the advances in technology they’d be able to fix this. So I’m getting angry in advance and I don’t know if I’m the warrior you are when it comes to turning loss around. Anyway, cheers! This is inspiring.

    • Thanks, Robin. It’s an all day affair since there are many speakers. I’ll let you know more about it if you’re still interested this fall.

      I couldn’t hear a thing without my fancy hearing aids and equipment. So, for me, a big improvement, but satisfaction? Not really. Hearing aids aren’t like glasses. They can’t replace or sharpen natural sound and it’s much more than a volume problem. But I’m never far from those hearing aids. Technology improves, but they don’t know what’s going on with me up at Strong Hospital or with many who’ve lost hearing. Meniere’s diagnosis. What’s that? A bunch of symptoms. What’s the cause and what’s going on in the inner ear? No one knows. No one else in my family has had hearing loss. I became a warrior when I had no choice. You know about that.

      Great Father’s Day blog from you this week.

  11. Out of your life challenges comes beautifully crafted heartfelt personal sharing. You are teaching us all Elaine. Just this morning someone called me to say how grateful she was for your writings, how much you have guided and supported her through grief.
    Congratulations on you invitation to speak.
    So when are we going on our bird walk? Today I heard a towhee, bluebird, indigo bunting, wood pee-wee, field sparrow, yellowthroat warbler and an ovenbird. They are announcing their beautiful calls too, like you.

    • Steve, it’s sweet to get this encouraging comment from you. Thank you. I’m glad to hear that my posts support someone. That’s my hope. I look forward to having you read my book since you play such an important role.

      Bird walk? I’m ready. It isn’t easy to distinguish the sounds, but it probably won’t get easier. Let’s go this evening or this weekend. I’ll call you.

      Finally, it’s lovely being compared with birds. You know how to make me sing.

  12. Elaine, this is a spectacular essay. I will be sharing it on my FB author page. You got me with this line: “I miss my love affair with sound.”

    And with many other lines. You are passionate, poetic, and powerful. I know your book and TEDx talk will be also.

    I hope you will tell us the story of how you were selected to give the talk, the coaching and prep, the video, and the reflections afterward. What a treat that will be.

    Also, I want to connect you with my friend Viki Noe who has made grief the subject of her series of books.

    True love affairs never die. They continue in different form.

    • Your last two lines are so true, Shirley, and yet I feel how my life needs new love affairs as I lose old ones. Thanks also for your encouraging words and for sharing my post.
      I’ll write about the TEDx process. It’s five months away and I’ve just met my coach on email and begun the discussion as well as listening to TED talks by Brene Brown. I feel confused about where this is going. Trying to be curious rather than anxious.
      I’d love to connect with your friend Viki Noe. My feeble attempt to connect on Twitter was met with silence. I’ll try again.
      I hope your book tour is going well. I’m enjoying and learning from your book Blush.

  13. Elaine you are a rock and a true warrior! Whatever issues you have you certainly always have a way to deal and/or overcome. You are a pillar and being forthright about it makes you all the more admired. I know someone with that Meniere’s disease and know how debilitating it can be. Keep strong and nothing will be in your way,, mighty woman. And I’ve shared your book news, as you know, I can’t wait. 🙂

    Debby

    • Debby, I’m both both strong and struggling. I often wonder if the hero archetype is too much in charge in my life. I move forward planning talks and workshops and radio interviews and hope Meniere’s symptoms stay under control. Best to you with your new book, too, and thanks for sharing information about mine. My forthcoming book page is skimpy right now, but it will fill out over the summer. Best to you, Elaine

      • Thanks so much Elaine, I cannot imagine a skimpy book with all your words of wisdom and experience; and if it is then what’s there must pack a punch! 🙂

        • No, the book won’t feel skimpy, Debby, but the forthcoming book page is at this moment. We have plans. One thing at a time. We both know how hard it is to make a big splash, but like your menopause book, my book may be of most interest to people who need it at a specific time. Everyone goes through loss just as all women go through menopause.

  14. Congratulations on your acceptance as a speaker at TEDx!! I don’t doubt for a second that you’ll be amazing, and I love that you refuse to let your hearing loss hold you back. Grieving this loss is understandable and to be expected, but rising above it to set and conquer new goals is beyond admirable! Thank you for inspiring me to set my sights high and always *go for it!*

    Much love to you, Elaine! ~Ann

    • I hope I’ll do OK. I worry because of my hearing, but the truth is I’d find something else to fret about if it weren’t hearing. It’s already an interesting experience, but a little scary, too. I have to remind myself that it’s not as scary as chemistry. Thanks for your affirming feedback. I eat it up. Love, Elaine

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