Grief is a sacred journey

Dizzy, Deaf, and Determined: Living with Meniere’s Disease

David, Liz, me, Anthony, and LilBit

David, Liz, me, Anthony, and LilBit

“I have to lie down right now,” I tell my daughter-in-law Liz as I stretch out on the floor near the wood stove.

Who is this woman who has to lie down in the middle of making dinner? Do I know her?  She can’t be me.

Liz takes over in the kitchen.  She’s seen this before.

“Are you OK, Mom?” my son David asks.

“I’ll be OK. I’ll take Valium. It’s in my purse.” Valium? Did I say Valium? Who is this woman who sometimes needs Valium to keep herself upright? She can’t be me.

At the otolaryngologist's office

At the otolaryngologist’s office

David hands me my purse. I rummage in a pre-meltdown stupor. I have Meniere’s Disease. There, I said it. I hate admitting it, even to myself. Meniere’s is a mysterious inner ear pressure imbalance causing vertigo, deafness, tinnitus, nystagmus (unfocused eyes shifting from side to side), and nausea. Hearing loss seems permanent. Other symptoms come and go.

I slip half a 5 mg tablet under my tongue. I dislike this mind-dulling medicine, but it stops vertigo.

“I’m sorry, Liz,” I call toward the kitchen.

“It’s OK. Not much left to do,” she yells so I can hear her.

We spent a beautiful afternoon at Taughannock Falls State Park, walked on the shores of Cayuga Lake, played with stones, and listened to ice crack. I was happy, if a little blurry.

“Give me half an hour,” I tell Liz and David. Why didn’t I take the medicine earlier?

DSC01100My other son Anthony and our family friend Steve join us. I haven’t seen Steve for months, and here I am immobilized. He’s seen me like this once before.  My daily anti-vertigo medicines usually work, but not always.

“Are you dizzy, Mom?” Anthony asks.

“Yeah. Not too bad. Caught it just in time with Valium so I won’t crash completely.”

“Stress,” Anthony mutters.

“Maybe. Sometimes it feels random.”

Steve Smolen

Steve Smolen

“Mom, if you don’t think driving to Massachusetts last weekend to visit your sick brother wasn’t stressful, you’re kidding yourself. And it was Dad’s birthday. Then three days later we show up with our noise and chaos.”

“I love having you visit.”

“That’s not the point.”

My brother and me

My brother and me

Last weekend on what would have been Vic’s 74th birthday, I drove eight hours to be with my sick brother and his family. I want to support him more than anything and I will, but it’s hard watching another man I love suffer.

Closer to home and still living in her own apartment with the help of health aids and me, my 99-year-old mother-in-law slowly faded into another world, losing herself and her body. I’m the one who will stand by her to the end.

“What about me?” a little voice inside cries. I know that voice well. She insists I pay attention to caregiver’s exhaustion and my own health.

“How are you?” Steve asks sitting on the floor and reaching out to hold my hand. They surround me. David, Liz, Anthony, Steve, LilBit, and Willow. We wait a few more minutes.

DSC01124I sit up and get the lay of the land. I stretch and roll my head. Eyes focus again. Body feels present. I stand up carefully. They hover.

“I’m fine.” I say, and I am even though I wasn’t a few minutes ago. Valium works.

“You’ll be OK, Mom. It’s a hard time,” Anthony says as he rubs my shoulders. I offer a silent prayer of thanks and help set the table.

I’ve seen conventional doctors, alternative doctors, chiropractors, acupuncturists, homeopathists, medical intuitives, and every sort of audiologist and otolaryngologist. Meniere’s is hard to treat. Hearing aids help with the deafness, but not the rest.

DSC01131I’ve always counted on my strong reliable body, but when these symptoms crescendo, I feel helpless, old, isolated and out of it.

Just as with other losses I’ve experienced, I know the best things to do. Stay calm, keep close to the earth, ask for divine and human help, and find balance. Most important, look for love and lean into it.

***

For earlier posts about my ongoing dance with hearing loss, see I Want to Understand You and Hearing with Heart: Grieving for Lost Sound. For more information about Meniere’s Disease, follow this link.

36 Comments
  1. Dear Elaine,
    Thank you. Your gratitude, genuine “heart of sadness,” and willingness to be vulnerable offer such a great model for all of us.

    I am experiencing a lot of tinnitus. Now, I am grateful that it is not accompanied by a plague of other symptoms! Your courage inspires me.

    You also remind me that the cradle of loving kindness starts with family. All these reminders light my way.

    Ava

    • Ava, thank you for your kind thoughts. I hesitated to share this piece because of that vulnerability.
      I hope there is no reason to think your tinnitus will lead to more symptoms. It usually doesn’t and it’s irritating enough on its own.
      For me, this all began with hearing loss without cause almost twenty years ago. The dizzy part didn’t begin until the last few years and it’s much less threatening now that I’ve found the right medicines with the help of a patient doctor who helped me experiment and find what works. It’s usually associated with times of stress, so all the more reason to stay calm and still the frantic mind. I keep practicing.

  2. My husband grieves for lost sound, and I along with him. Hearing aids seem to help less and less.

    Speaking of less, I hope the symptoms of the meniere’s disease you experience become diminuendo (I’m not capitalizing it – maybe giving it less power, who knows.)

    I envy your facility with dialogue, an aspect of writing I’m struggling with in writing my memoir.

    As always, great post, Elaine!

    • Thank you. There is so much grief in deafness, Marian, and I had no idea until I’d experienced it myself. The isolation and struggles to stay in relationship are formidable–and for me, the danger of dizziness if I push too hard. It’s one reason I enjoy communicating in words.

      I listen to conversation carefully and often write down words that stand out for me. I didn’t always include dialogue in the past, but I like reading dialogue, so wanted to learn to write it. I imagine you’re better at it than you say.

  3. You are a remarkable woman Elaine, in more ways than you probably realize. Peace to you and keep doing what you are doing, but don’t forget to make some time for Elaine. 🙂

    • That’s a kind thing to say, Debby. I’m just determined, but you know plenty about that. I’m taking very good care of myself these days, but it was one hard winter and the family health problems continue on.

  4. Hi Elaine, nice to read you. As you are doing to your mother in law, i helped do to my 101 yr old aunt who left us a week ago. And like you I have a brother 67 yrs old diagnosed with serious illness who is not talking, and I am far away unable to share with him. I’m in shock too so waiting and hoping for an idea to pop up about what to do next. Have to be patient. Meanwhile doing our family tree in Ancestry.com, very interesting. Wishing you and your brother well. All these feelings that we have to respect!
    Glad you have learned how to manage more or less your Meniere’s, bravo for Valium. Beautiful photos, thanks for sharing, happy Spring days!

    • We have some hard things in common, Nati. How did it feel to let go of your aunt? Even with my husband, although he was in his sixties, there came a point when the body was too hard to endure. I’m sorry about your brother who isn’t talking. All I know to do is visit when they’re ready for a visit and give them space when they aren’t. And, yes, the sick one gets to call the shots and we have to respect their decisions.

      Waiting for spring days in upstate NY on my hill. Ground is still frozen solid and the bluebird males have not returned. They will. I know they will.

      • Life battled and didn’t want to leave my old aunt Rafaela, but her body got so weak that it died on her, so life had to go somewhere else to continue living. There’s an empty feeling but all the love and happy times we shared is still there. Such a long lucid life. She lived by herself until she was 98, she smoked into her nineties too. Her brother (87) visited, did errands and chauffeured her. Neighbors cautiously dared to help, she was very independent and strong minded. She died in a large nursing home attended by her youngest sister (80) who is a nun there.
        Thank you for your thoughts and for sharing with us. Hugs your way.

        • Thanks for your story, Nati. I love the way you say that life had to go somewhere else to live. I just wrote a piece about my mother-in-law and the slow yielding of her formidable will as her ego thins. In the end, the body always has its way. (She still has a glass of red wine every day.) Health aids are with her five hours a day now and I visit twice a week. I hope with help she can stay in her apartment in senior housing and we can prevent that last move to a nursing home. It’s not entirely in my hands, but that’s the hope.

  5. I went to a play reading this week and thought of you because I could hear only about 50%, if that, of what was said. Between people speaking quickly, our noises world and muffled sounds, I can relate to this part of your struggle. But to also have to deal with all those other symptoms seems like Mt. Everest to me. Please be gentle in your expectations of yourself. It has been a stress filled few years…the book (need I say more.), your brother, your mother-in-law, all wrapped in loss. Thank you for your vulnerability. Love, Mary

    • Thank you, Mary. How lousy that your hearing is bothering you this much. The world is very noisy and hearing aids aren’t discriminating about what they amplify. My life is quieter than it was in the fall and spring will come. I don’t have Meniere’s episodes frequently, but felt it was time to write about it.

      About those expectations: When, many years ago, I asked my teacher Anthony Damiani how he was dealing with big disappointments, he said with a gentle smile, “I lower my expectations.” I always remember that. He worked hard, but he had a grasp on the lessons of the Bhagavad Gita. Do the work without expectations. You remind me.

  6. Thank you Elaine for your raw honesty. I think when we have been taken to our knees, that we feel liberated to share. Your candor is inspiring .

    • Some might think me a bit too honest, Kim, but Meniere’s Disease brought me buckets of new grief–for myself and the new life I was building. I saw how hard it is to carry on with hearing loss and how I had to persevere to get help. Since I’ve been able to do that, it feels right to let others know what’s going on behind the scenes. When I push too hard, my body says so right away. I’ve had no more incidents since the one when my family was here, but it made me very careful about eating, exercising, and resting well. All good things in their own right.

  7. Don’t you wish that after a traumatic loss like that of your husband that you could get a “I never have to lose anyone else” card? I remember thinking that somehow I could be immune after losing my husband, but then I lost my dad, a dear friend and a 50-yr-old cousin within 5 weeks of each other!
    Although I wasn’t diagnosed with Meniere’s Disease it felt dizzying and it took a long time for me to “balance” myself out once again. The bar you set for yourself is high as your spirit is good at walking in when others walk out, and your essence is of caregiving; however, your body is screaming – be still, time out! Take care of YOU while you journey with others Elaine. Peace be yours.

    • I’m sorry you had such a hard time with so many losses piled one on top of the other. Apparently, no passes are given. When I first felt dizziness more than two years ago, I thought: “Wait! You can’t do this to me. Haven’t I paid my dues? I’m just getting a new life.” And then I laughed at myself. No immunity. Meniere’s symptoms came four years after Vic’s death when I was the least stressed and the most hopeful and happy I’d been in a long time.

      After intense periods, I plan quiet periods with few activities, a slow down rather than a complete time out. It’s good my body is a clear messenger and also good I have medicines to deal with symptoms when they show up. The best medicine is sleep, along with an excellent diet. Hoping to slowly build back to my old sense of resilience.
      Thanks for your reflections and more of your story. Warmly, E

  8. Having just gone through a three-week bout with vertigo myself, I can sympathize. The nausea was the worst, and it was harder to concentrate. What you have is even worse. I can only feel for you and hope you can recover. In the meantime, it sounds like you are taking good care of yourself. Stay well! –Ann Marie

    • Impossible to concentrate when the eyes won’t focus. Fortunately I haven’t had another incident since the one I wrote about and that wasn’t severe like these episodes were two years ago because I know how to deal with it. Too much noise and not enough rest are my enemies. No rock concerts or all night dancing for me. Thanks, Elaine

  9. Elaine, I am thinking of you and how the Universe is asking you to take care of yourself emotionally. Your article is raw and beautiful at the same time. When my son died, I said to myself that the worst possible thing had happened and I had survived. It catches me by surprise when other griefs occur, and I have to laugh at that image of the “get out of jail” card. You are a blessing to our world and I am thankful for that. Love to you and may the birds and flowers suddenly suffuse your life with joy.

    • Thank you, Therese. I think this is as much about physical self-mothering as it is about emotional self-protection. I need more sleep and more rest than I did in the past. Meniere’s and probably aging, too, introduced a new fragility. Pushing just a little too hard as I did with the visit with my sick brother and then having my family here can bring on symptoms. I do well with a more monastic life, but I’m searching for a balance. Birds and flowers are great medicine for me, but we had cold rain and then snow today. Not much snow, but it remains unseasonably cold and gray.
      No “get out of jail” free cards for us or anyone.

  10. Sending you my love. Sending you hugs. Thank you for your stories as we learn from one another how to be resilient.

  11. Your husband’s birthday, your brother’s illness, your mother-in-law’s waning … Elaine, any of the above (let alone all of the above) are tremendous stressors atop the stress of caring for your own health.

    I absolutely love your closing comment on this post: “Stay calm, keep close to the earth, ask for divine and human help, and find balance. Most important, look for love and lean into it.”

    Please, Elaine, be sure to allow yourself that balance and leaned-into love.

    • That’s the goal, Teresa, and I do well most of the time. Missing Vic becomes so strong when I’m ill or someone I love is having trouble or I need to talk something through. This winter, a friend had flu for the first time since her husband’s death. She repeatedly said how hard it was to be ill with no one to bring her tea or even know she had a high fever. I needed to let that message in and realize I’m in a similar place still. It’s hard to be sick or worried on my own. It’s hard to laugh at the small things, too. And I’m not alone in these difficulties. Thank you for our kindness.

  12. I love you Mama E!

  13. You are one tough cookie, Elaine. I didn’t realize how debilitating Meniere’s could be. How on Earth do you keep your crazy schedule with workshops and readings going? Yow, what energy you still have. Or manage to come across as having. Still. I’m rooting for you. Cheers!

    • Hi Robin. Symptoms have always been periodic, but before I had good medicines to help on a daily level and stronger medicine to help in a pinch, it was disconcerting. Stress makes symptoms worse, but the symptoms cause stress! I have good energy still most days. Vic used to call me a “mudder,” a horse that runs well on a wet, muddy, slow track. That’s me. I keep going.

  14. Elaine, thanks for having the guts and vulnerability to share this piece with the world. Telling the truth is good for healing and for others to hear no matter how much it may pain or scare them. Thankfully, I don’t have Meniere’s Disease but I do have orthostatic hypotension and frequently feel dizzy upon standing up. Dizziness and nausea or my two least favorite pains to have. You have a wonderful attitude despite the major discomfort of your situation. I’m so glad that your family is loving and accepting when you are going through these destabilizing symptoms. As always, your writing is beautifully descriptive even with the topic is dizzying!

    • Hi Judy,
      I write so much about my personal life that it felt dishonest to omit Meniere’s. Fortunately, the symptoms can be controlled now, so it isn’t nearly as alarming as two years ago when I didn’t have medicines or a clear diagnosis. Now I know what to do. I’m still working on my resistance to Valium. It was the only reliable medicine at the beginning and it made me depressed and sluggish. Now occasional use of a tiny amount doesn’t lead to the need for more Valium and it always calms symptoms. I had to accept a need for medicine. My family is supportive, but they live far away, so I usually face this on my own. I have friends I can call for help, but that hasn’t happened for a few years.
      Thanks for your kind words about my writing and courage. Sometimes we’re forced to be courageous.

  15. I had no idea you had to deal with Meniere’s. You are such a strong woman…keep on writing, love it!

    • Thanks, Julie. It’s important for me to not be too strong. It would have been wiser to take Valium earlier and short-circuit the whole episode. Thanks for your encouraging words.

  16. An excellent write. I am sure you will empower many readers through your courage.

    • Thank you, Victoria. It felt important to tell this part of my recent story, a part I hoped would completely disappear. I’m grateful it’s manageable now.

  17. I have been searching for sites more current than those 2012-2015 and stumbled on this. Diagnosed in 2013 and missing work for a full month with my first attack. They are not as long but much more frequent. I have an extreme fear of any type of surgery. It seems to be in my left ear only for now. I am 56 years old and trying desperately to hold onto my job. I had the most wonderful supervisor who would let me take time off or even work from home when I was able to do so. No having to switch supervisors I have had to go to FMLS and get approved for Intermitant MFLA. My new supervisor mad a statement that this seems to be happening more frequently. During some minor attacks, though I was unable to work from home since I did not have to drive or move around much. Now with my new supervisor I have had to apply for an Accomiadation approval to work from home. My work had provide me with a laptop to I could still do all of my job functions from home and now the new Sup wants more. I do not want to go on disability, I want to work. When I am home with an attack I rarely leave my bedroom. I can’t imagine spending my life like this.

    • I’m so sorry, Karen–and I get it. I began with my first Meniere’s vertigo three years ago at age 66. Hearing loss began in my early 50s, but even though I had a “Meniere’s pattern,” I didn’t get vertigo until more recently. I’ve always been a zero prescription drug person, but had to change that. I now get help from Meclizine and a small daily dose of hydrocortisone. For emergencies, I carry Valium with me, but it’s addictive and I don’t like the way it feels. So, I balance each day and try to keep it going. This has been a bad week. I don’t know why or what to do about it. The randomness is hard to manage so that’s why I’ve resorted to prescription drugs that keeps the whole situation manageable, even though not comfortable. I also can’t imagine spending my life like this, but I’m not sure I have a choice.
      I was lucky to find a doctor who would work with me to find drugs that helped prevent the most severe symptoms. Acupuncture, chiropractic, homeopathy, and many other alternative therapies didn’t do a thing. I decided drugs over disability, but I know that drugs don’t work for everyone. Maybe I was lucky in this way. We had to experiment for two years before finding a reasonable plan of drugs that aren’t considered dangerous. I know I pay a price for them, but I’m willing to pay.
      I wish you well. I wish you support at work and good medical support, too. This syndrome/disease is a nightmare.

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