Dizzy, Deaf, and Determined

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.

48 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.

  18. Elaine, you are such a brave and bright soul. That shines through in your words. Thank you for sharing your thoughts and feelings here for all of us to share.

    • Thank you, Caroline. We all have physical, mental, family, political, or financial issues to deal with every day. Concealing my concerns makes me feel distant and isolated, so I’m a fan of telling it like it is–even though part of me wants to hide every imperfection. Hearing loss is not visible to others (new hearing aids are nearly invisible and no one ever notices unless I point them out), so it’s easy for others to not know.

  19. I’m unsure why I am seeing this only now Elaine! 2 years later! Just to say it’s a powerful post as are the comments and your responses to them. We have to take care of ourselves and find ways to navigate this world of lessened hearing. It’s a (I wanted to say it’s a bitch but maybe that’s not an appropriate word. Female dogs are bitches -) It feels like a betrayal to me –

    • Susan, I’m sharing older blog posts on weeks I don’t write a new one. I have new readers who haven’t read these older posts, so I re-share ones that feel important to me or that I particularly liked. You’ve known about my hearing issues through my writing and in private communications. About betrayal: In the late 1960s, I loved the book ‘The Betrayal of the Body.’ For forty Vic and I were health enthusiasts with careful healthy food choices, good exercise, and meditation, but my fantasy that taking good care of our bodies protects us from the body’s destiny began to dissolve when Vic got a rare cancer with no risk factors. Maybe it really began to dissolve when I was in my 40s and one of my best friends got leukemia and died. Just bad luck, they said in her case and in Vic’s. The same is true for Meniere’s Disease. No risk factors, no cures, and not much to be done about it except endure.

      Thank you for the beautiful review of ‘Leaning into Love’ at Amazon. Amazon wouldn’t let me share it directly, but I was able to copy and share it on Facebook. It was a sweet surprise when I found it last night.

  20. Wow ~ what beautiful synchronicity to discover your blog today. I just read your entry on the Daily Good and was deeply moved. I then looked you up and have been reading several of your blog entries–and finally had to comment on this one. As a 62-year-old woman who has had the immense privilege of health until 6 months ago when I was diagnosed with a chronic illness (POTS), your entry went straight to my heart, along with what you wrote in your entry about owls–“This challenges a woman who has felt grounded most of her life, but there are lessons to learn in every experience.” Your willingness to share your vulnerability is a gift to us all. To help manage the symptoms of my illness, I was just prescribed Valium (along with other medications). As I work with the resistance to being the one to have to lie down when dinner is being fixed or served, and the one needing medications that I’d tried so hard to avoid, your openness and self-compassion are inspirational to me. As is the honesty and love with which you are tending to your mother-in-law in her new home. And the way that you are living and opening to your life as it is. I wish you well and send you gratitude.

    • Thanks for your generous comment, Anne. Nothing sweeter than to know someone resonated with my words. I’m sorry you struggle with POTS. It sounds difficult and similar to the symptoms I face although from a different cause. Meniere’s Disease takes my hearing in fits and starts so I’m about 98% deaf in one ear and have about 40% left in the other. And what’s left is distorted so I struggle along with lip-reading and interpreting as though I’m hearing a foreign language. I’m definitely not grounded but struggle with balance often–although not all the time. I don’t have nausea anymore because I take Valium when the symptoms get debilitating. After a few years of trying every natural possibility, I began saying yes to prescription medications. First it was Valium. I still take a small amount of Valium and keep it with me at all times for situations when symptoms flare. I take a few other small doses of anti-vertigo drugs each day and they keep me upright and functioning. Self-compassion is a big one for me, too–to not blame myself or chastise myself for being vulnerable. I recently wrote a piece about where my Meniere’s Disease situation is now but haven’t shared it. It makes me feel so vulnerable–but you make me think I need to share it anyway.

      I just wrote a review of a book called ‘Belonging: Remembering Ourselves Home’ by Toko-pa Turner. Her book helps me accept (or belong to) myself. My mother-in-law is now in a nursing home and a hospice patient. It hurt to put her in a nursing home, but we had no choice. She mostly sleeps now, but I know from my own mother’s illness that this could go on for years. I also wish you well, Anne. Thank you for reaching out to me.

  21. Hello, again, Elaine,

    For some reason, even though I had subscribed to your blog, I did not receive notification of your response. I came across it today when I returned to your blog for inspiration.

    First, I want to thank you for taking the time to respond so thoughtfully to your readers ~ what a gift! Second, I want to encourage you to share your recent piece about where your Meniere’s Disease situation is now–unless your intuition is telling you otherwise. The way you share your vulnerability is evidence of such a deep strength, and this is the well it seems we all need to drink from, especially during difficult times.

    I just looked up Toka-pa Turner and will be ordering her book on belonging. The title of the book alone is a wonderful reminder of all that a chronic illness cannot take away–and of how I can use it to find my way home to myself. I had a dream a few nights ago of saving a baby elephant from drowning, which somehow feels related.

    My mother-in-law just moved into an assisted living facility at the age of 97, so I think I have some sense of, though necessary, how heartbreaking it can be.

    Thanks, again, for sharing your journey ~ it makes a world of difference.

    • Anne, thank you for your kind and encouraging words. I hope you receive this comment. Since I don’t see my blog from your perspective, I wonder if there’s a place at the bottom where you check to have responses sent to you. Others respond to my replies, so I think there must be such a box, but updates change everything constantly, so it may not be there anymore.

      I’ve written a new piece called “My Friend Meniere” and plan to share it in June. Tomorrow I’ll share a piece about the 10th anniversary of my husband’s death (June 3). I’ve had the Meniere’s piece in the queue for a while. It’s time to put it out since I’ve lost more hearing and gained more auditory distortion. No hearing miracles so far. Stubbornness keeps me from withdrawing and becoming a hermit because hearing is exhausting and stressful–and a straing for friends and family. I have another audiology appointment in late June.

      I love your dream image, Anne. You saved an endangered intelligent baby! “What are your associations with baby elephants?” “Who is the baby elephant in you?” “Who can save that part of you?” What an image! I fell in love with elephants in India (well trained and loved temple elephants rather than wild ones). Four appeared in a memorable dream a few years ago. My husband had wonderful elephant/Ganesh dreams and I’ve written about the Elephant God Ganesh or Ganesha: https://www.elephantjournal.com/2013/09/dear-ganesha-patron-saint-of-writers-elaine-mansfield/

      I’m glad your mother-in-law has help beyond family and I hope she adjusts well to her new home. At 102+ my mother-in-law is anxious and wants to die–but she lives on. I haven’t written about how grueling these last months have been for her and all of us. The only redeeming factor is hospice. She is now a hospice patient, a godsend for her and for me. Last week she fell out of a wheelchair and broke her nose. She’s now in a reclining wheelchair. She has enough cognitive awareness to know where she is and to want to escape. Sigh…

      Thanks again for your comment. I appreciate your persistence (stubbornness?) in getting it through to me.

      • What a gift it is that you are so responsive to your readers! I enjoyed reading your piece about Ganesha. (I recently wanted to find out about a female elephant deity, and learned a little about Vinayaki.) I saw an image in a movie recently in which a woman breathed life into a baby elephant that had just been born (I cried at the beauty of it), so I’m sure the dream is drawing upon this. I love wondering, as you suggested, who the baby elephant in me is. And now I get to mother her.

        Thank goodness for both you and your mother-in-law that she is now a hospice patient. I was a hospice volunteer for a number of years and am deeply grateful for what hospice provides for patients and their families. I wonder if you’re still too “in it” to write about how grueling this time has been, or perhaps it is just too personal.

        I just read your beautiful entry about the anniversary of your husband’s death and will look forward to reading “My Friend Meniere” in June. The title alone helps me shift perspective about the illness I live with. And thanks for making note of my persistence/stubbornness. I try and hide how stubborn I can be, and your comment helps me see the gifts in it.

        • Anne, I haven’t heard a thing about Vinayaki. I’ll look Her up.

          I’m grateful for Hospicare as a family member who is now supported by our hospice team. I love working as a volunteer there. Recently, I took a break from offering bereavement support, but I’m still working in the office as part of the volunteer program and write for the newsletter. My first volunteer experience 9 years ago when I was too weepy to deal with patients and families was in the office. I’ve kept that job through my brother’s death and now this prolonged experience with my mother-in-law. I love the staff and people who devote their lives to this work.

          My mother-in-law is recovering from the recent fall, something no one expected. Now we’ll wait for a new catastrophe. Until Medicaid comes through, I’m responsible for her bills and all her money has been spent supporting her. Things fall apart when a person is 102. I’m writing about how grueling this time has been and, in the past, I’ve written many pieces about her and taking care of her the last eleven years. I always try to find an interesting twist or redeeming perspective, but there isn’t much redeeming now except her remarkable resilience. I’m worn out. Here’s the last piece I wrote about her which was in March. “A Mother’s Lament” https://elainemansfield.com/2018/mothers-lament-loved-heart/

          Saying Meniere’s Disease is a friend is tongue-in-cheek (as you guessed), but it’s with me night and day and part of my life, so better to find a drop of humor in a hard situation. A friend told me I’m stubborn because I refuse to stop trying to manage in the hearing world and won’t give up. Yes, I have to be stubborn to keep a life going unless I want to be a hermit. I’m sorry you’re struggling with illness, too. Seems to be the way of life… Stubbornness is necessary sometimes.

  22. Thanks for referring me to “A Mother’s Lament.” You really manage to go right to the heart of whatever it is you are writing about, Elaine. I come away from your writing feeling more spacious and able to embrace life as it is. In particular, your words from this entry, “As I always do during hard times, I watched for tender moments when grace poured in, the moments I’ll remember when the exhaustion fades,” are an inspiration.

    • Thanks again, Anne. You mention a similar idea in your previous comment. Thank you for reading my intentions so carefully and noticing this thread. It’s a powerful practice. Thank you, Etty Hillesum and Rainer Maria Rilke, for teaching me the importance of holding the light in the darkness. Also John Tarrant (psychologist and zen master who wrote ‘The Light Inside the Dark’–another book Vic and I cherished), the Dalai Lama and Pema Chodron and many more. It’s not denying the obvious that life often hurts, but instead a remembrance of a bright side if we look for it. Nature helps! Yesterday the last of 5 bluebird babies fledged as I watched through a telescope.

Leave a Reply