“The Darker Side of Hearing Loss”

My grampa as a young man

……….

Recently, I read of a study by Johns Hopkins University concerning the relationship between hearing loss and dementia. According to the study, people with mild hearing loss were twice as likely to experience dementia, those with a moderate loss were three times as inclined, and those with severe hearing loss were five times more prone to develop cognitive issues that fall under the umbrella of dementia. Contributing factors include accelerated atrophy of brain tissue caused by hearing loss as well as the profoundly negative effects of social isolation many deaf people face.

I was vaguely aware of this, having read something about it in the past, but I was not prepared for the statistics this study presented. So, of course, my overly analytical mind seized onto this like a Chihuahua with a squeaky toy and wouldn’t let go. You see, dementia is one of my greatest fears, and I have the dubious honor of hitting the Dementia Trifecta: I have severe hearing loss, major depression and severe chronic insomnia, all three of which are precursors to some form of dementia. Add to this the fact that dementia runs on both sides of my family and you have a nightmare scenario in the making.

I’ve battled major depression for as long as I can remember, dating back to early childhood. Much of this originated due to the severely dysfunctional family in which I was raised. My depression has been, for the most part, resistant to treatment. There’s a brain chemistry component involved, of course, but I’ve never found an anti-depressant that actually did anything to lessen the effects of my depression. Talk therapy helps to a degree, but at one hour every two weeks, it’s not something that has a lot of carry-over during the interim between sessions. PTSD has an effect on my depression as well, and has contributed to the futility I’ve experienced with regards to my inability to make any significant progress in treating my depression. EMDR therapy caused a disturbing negative reaction which left me experiencing several strange physical symptoms, some of which are still present thee years later.

My sleep disorder has been traced back to one particular incident involving domestic violence when I was eleven years old. It forced me to become hyper-vigilant at an early age and I ended up “training” myself to stay awake until my father went to bed and was asleep. Only then could I know my mother was safe, and only then could I allow myself to try to sleep. However, years of this hyper-vigilance produced insomnia so intense and pervasive that I still suffer from it decades later. Nothing—absolutely nothing—has ever put a dent in my insomnia, and after years of therapy and every treatment method I could find, I finally surrendered to it and accepted that it was not going to go away. And it hasn’t. And its effect on my life is profound.

Of course, the reason I began this blog is because I’m deaf. Hearing loss has such an over-arching impact on one’s life. Those of you reading this who are deaf will understand; those of you who are not cannot understand unless you have a close family member or friend who experiences deafness. Even then, it’s not quite the same as being deaf, but it does offer a uniquely intimate window into the deaf experience.

Deafness is all-encompassing. Everything is affected by it to one degree or another. Everyone knows, for example, that a deaf person has difficulty or a complete inability to enjoy music, but how many hearing people know that hearing loss can affect the way a deaf person walks? Or that it is a possible precursor to the horror of dementia? How many hearing people know that deafness-induced social isolation can lead to issues such as poor eating, addiction, failing physical health due to lack of exercise and self-care, depression, and even heart disease? There’s much more going on here, much more at stake for those who are deaf, than meets the eye (or the ear, as it were).

In my own unique case, there appears to be a nasty synergy occurring among my Big Three Issues: deafness, depression and insomnia. When one gets worse, the others follow suit, thus creating the proverbial “vicious cycle,” and can lead to a snowball effect. When I can’t sleep, my depression worsens, which affects my sleep to a greater degree, which causes my depression to plummet even more, which causes my hearing to suffer from both fatigue and an inability to concentrate deeply enough to lip-read. Also, when I’m lacking sleep, my ears ring much more loudly and incessantly and it actually feels as though my inner ears are feverish. When my remaining hearing suffers like this, it makes my depression worse, and it becomes a situation where it feels as though I’m spiraling downward, caught in some uncanny and surreal maelstrom. When this occurs, the only remedy is sleep, and lots of it. Which, of course, is difficult for me to attain.

What does this have to do with dementia? And am I guaranteed to slip into the darkness of that terrible state of being? I suppose I should explain why this concerns me so much.

My grandmother on my father’s side developed dementia in her ’80s. One of my father’s older sisters followed suit and became so violent that she actually would shoot at people. My father eventually fell into that very same black hole, which ultimately led him to take his own life at age 76. During one of my last interactions with him, in 2015, he was in a paranoid rage, completely out of his mind, and he punched me and threatened to shoot me. I had to file a police report for physical assault. He lied to the police about what happened and they couldn’t charge him because there were no other witnesses. I saw him only twice shortly after that. By the time he killed himself, he was completely in the throes of dementia.

But that’s not really why I’m so concerned. The main reason for my fears of falling prey to this insidious disease has to do with my grandfather on my mother’s side.

I recently posted a trilogy of poems I penned about my grampa, alluding to his descent into dementia. I wrote these pieces out of feelings of both sadness and guilt. Sadness because of never getting to know him as well as I would have liked, and guilt for not being able to force myself to visit him in the nursing home after a series of strokes decimated him and then the indignity of Alzheimer’s Disease settled over him like a filthy cloak, forever obliterating what was left of my grampa.

He was in the hospital after one of his early strokes. My mom, my two sisters and I went to town to visit him. There he was, my big Viking grampa (half-Danish, half-Norwegian), broad shoulders and even broader ever-present grin, sitting on the edge of his hospital bed. He looked normal, seemed happy, appeared fully lucid. My mom was chatting with him and he was smiling as always…and there it was…a facial tic on his right cheek. He didn’t notice it. He continued smiling as my mom talked, and the tic continued for several moments, worsening, twisting my grandfather’s face into something almost obscene. He couldn’t tell what was happening to him, he just sat there on the bed, twitching. I felt the blood leave my head and everything became quiet and I felt my gorge begin to rise and I turned and fled the hospital and ran out to the car, horrified at what I’d just seen. Was that my grandfather in there? Was it really him? It couldn’t have been. The man I’d known all my life could never look like that man I’d seen sitting on the edge of the hospital bed with his face twitching.

It took several minutes for my stomach to settle. Later, my mom and sisters came out to the car and we left for the farm. And that was the last time I ever saw my grampa alive.

Something had broken inside me. I wasn’t sure what it was. Perhaps a good chunk of my innocence had been shattered beyond repair. Whatever it was, I couldn’t bring myself to visit my grampa after that. Every time my mom would drive to town to see him, either in the hospital, or later in the nursing home, I stayed home. I just. Couldn’t. Do. It. The mental image of my grandfather sitting in that hospital room twitching was burned into my mind and all I could do was try to bury it. So, I went to work doing just that, grabbing my shovel and piling tons of guilt on top of it until I was numb. I mean, that wasn’t my grandfather. Not anymore. My grandfather was the guy who always wore bib-overalls and smelled of coffee and cigarettes. My grandfather was the guy who played the accordion and sang Norwegian songs to us, his big grin so expressive and his blue eyes twinkling. He was the guy whose idea of a cup of coffee was about an inch of coffee and the rest a mixture of honey and condensed milk (so sweet you couldn’t even taste the coffee). He was the guy who talked about fishing all the time and made homemade sinkers in his work shed where he also kept his fishing worm farm. He was the guy who taught me to drive in his old black 1949 Dodge truck, double-pump clutch and all. He was the guy who always had a prank to pull, a laugh to bellow, a grin to share. He was the best guy who ever lived. No, that man in the hospital—and later in the nursing home—was not my grandfather. He was an imposter, some thief who had stolen my grampa’s body for his own and had twisted it out of shape and scared the living daylights out of his teenaged grandson.

My grampa died when I was 21. That was the first time I saw him since that horrible day in the hospital years before. He looked peaceful in his casket. He’d lost a lot of weight and was gaunt, but that was him, that was my grampa. That eldritch imposter had finally returned my grandfather’s body to its rightful owner, and we were burying him. It was hard to look at him, but I did. I had to make sure.

I carried around this guilt for years. I loved my grampa dearly, but I had betrayed him. I had left him when he was the most vulnerable, and I hated myself for it. But what could I do? He was gone now and there was no way to tearfully apologize to him for having abandoned him. Toward the very end, he didn’t recognize anyone, so if I’d gone to see him he wouldn’t have known who I was anyway, I told myself in an attempt to quiet that guilt. But guilt is a funny thing. When it get to yammering, nothing will shut it up.

Well, almost nothing.

In 2012, after having experienced a 20-year fallow period in my writing, I suddenly sat down one night at my computer and began writing again. Poetry this time, unlike in the past when I’d focused on short fiction, back when I was actively submitting my work to publishers and racking up rejection slips. That night was apparently the night my long-absent muse shat on me. For the next month or so, I wrote poetry, piece after piece, and among those pieces were three poems about my grandfather. It was time. Time to deal with years of guilt with regards to the Greatest Grampa Who Ever Lived. The words flowed like tears I’d long-needed to cry but never had been able to. I realized I’d finally found a way to deal with the guilt I’d carried for so long. It hurt, but I was able to honor my grandfather in writing, and it helped more than I could ever have imagined. I recall reading those three poems with my vision blurred with tears from all the memories they evoked. I remembered my old Super-8 film of my grampa smiling and talking to me—silent film, all five seconds of it—and it struck me that he was still there and always would be, no matter where I was or what I was experiencing in my life. All I had to do is close my eyes and remember.

Dementia took my grandfather away. The world is a lesser place without him. And if dementia could fell my grampa, it could take down anyone, including me. And so I worry. I worry that I may suffer the same fate as my grandfather, a fate no one should have to endure, a fate that robbed him of his very essence and robbed the rest of us of the most wonderful man imaginable.

I understand that it’s not a done deal. There’s no guarantee it will happen to me. It skipped my mom, who was lucid and still herself until the end at age 75. But I keep my eyes open for any early signs just in case. I know mine isn’t the only family that has battled this monster. My love goes out to of all those who have gone through this. It’s painful, and the guilt can be crushing, but we will remember those loved ones as they were, and we can honor them in our own unique ways.

12 thoughts on ““The Darker Side of Hearing Loss”

    1. Yep, incessant ringing and head noise are weird aspects of hearing loss. I experience a constant background roar of static hiss, like that of a tv station that’s gone off the air, and which intensifies in volume when I’m fatigued. I also am prone to odd random head noise that isn’t really “sound” but is just damaged nerves firing off. This has ranged from clicking mechanical sounds to insect-like buzzing to dove-like cooing to the sound of boulders tumbling down a mine shaft, to name a few bizarre examples. I’ve had this going on for so long that I’ve become fairly accustomed to it, but I’m aware that tinnitus can be incredibly distracting for some folks. It’s such a strange paradox how a person can have severe hearing loss yet suffer from such disconcertingly loud issues like this. I’ve always maintained that, for me at least, deafness doesn’t equate silence. It may have a lot to do with my type of deafness (auditory processing problem). I hear some sounds but understanding speech is pretty much out of the question at this late date. As always, thanks, David, for sharing this info. I appreciate it. And thanks for reading my work. Means a lot to me. 🙂

      Liked by 1 person

  1. I just want to hug you…

    It’s good, this writing out of your innermost thoughts and fears, good for your soul, it helps me endlessly although I tend to wrap my issues is a comfort blanket of self deprecating humour.

    You’re right, I can’t understand what it feels like to be deaf, I can’t empathise myself into that world, I have no concept of it.
    I do have tinnitus… I wish over and over I could just switch that off, constant noise. I have mild hearing loss and noise anxiety but it’s doesn’t scratch the surface of what you are dealing with, I know that. I’m telling you this because in comments you have mentioned your deafness, knowing I’m reading your words like it’s an elephant in the room I’m ignoring. I promise you it’s not the case but it’s also not the primary thing in my mind as I read you. I see eloquence, depth, understanding, wisdom, I see pictures painted with your words in vivid colours. I see love, regret, life.
    I see the man that your life for its rocky path, has led you to be and frankly, deaf or not, he’s pretty amazing.

    Liked by 2 people

      1. All hugs accepted, free of charge. 🙂

        This is a beautiful comment, Juliette, and it touched my heart. To be honest, i don’t know how to write any other way than to be brutally authentic with myself, even if it means digging deeply to the point where I don’t know exactly what I’ll uncover. I use it as a form of self-therapy, as well as to cut through the numbness of a life spent on the outside looking in. I still battle with my deafness daily. Perhaps it’s my cross to bear, tempering me into a wiser and better person along the way (I hope, at least). I try not to let it define me, although it’s difficult not to. Most times, I feel more blind than deaf as I stumble through life’s dark corridors of uncertainty and fear and regret, and when I write about such personal things, I often cringe at what others may think when they read my confessional poetry and prose. To receive such wonderful feedback as you’ve written here makes me feel like maybe there is hope after all. Maybe there are human connections still to be made, people who understand and accept and encourage. Thank you so much for your kindness, Juliette. It really does mean a lot to me. 🙂

        As for tinnitus, believe me, I know it’s much more serious than some people may think. It can be devastating and has real consequences for those who suffer from it. I feel fortunate that my own constant “static hiss” and occasional head noise aren’t as debilitating as tinnitus can be for others. My heart goes out to all who experience any sort of hearing issues. You are not alone. All these things we experience, these battle scars upon our bodies, these tears upon our cheeks, make us who we are, and that’s a good thing. We’re unique, we each have a story (or two) to share, and when we’re brave enough to tell our tales, we can touch lives in amazing ways.

        Thanks again for such a nice comment. And thanks for reading my stuff. I really appreciate it. I’m looking forward to reading more of your work as well. 🙂

        Liked by 2 people

  2. As I read this my eyes got numb a long the way, I wouldn’t know half the pain you went through even if I tried and I have a huge amount of respect for you, no I don’t pity you a bit but it saddens me to know a good person as you have to go through that and I admire the way you pulled yourself though all life’s hurdle. No one would be as brave as you are to face it all and get through life the way you do. You are an inspiration Mike, I am so damn proud of you my friend. I wish you well. 🌸✨

    Liked by 1 person

    1. Thank you so much, Daphny. You have no idea how much your words mean to me. Thanks for reading this and for an absolutely wonderful, heart-warming, humanity-affirming comment. It’s so nice to know there are good people like you in this world. It makes it easier to continue moving forward despite the struggles. You’ve got a golden heart, Daphny. I sincerely appreciate your kindness. 🙂

      Liked by 1 person

      1. You’re most welcome Mike! I am really glad you told me of this and I had the opportunity to read, you know how strange the words is words speaks much more volume than ones voice and it is in ones words that we can truly hear. I’m glad you’re apart of WordPress and I am part of your journey. You are too kind to say so my friend, I look forward to your many more journeys ahead. ☺️

        Liked by 1 person

  3. A very moving and so honest account. You really convey several issues but the one about your grandpa is different and so personal. Your grandpa sounded wonderful and so sad that his personality went with dementia. A very difficult time too when we are teenagers. I think your writing is very important and a tool against dementia when we structure memory in our life stories.

    Liked by 1 person

    1. Thank you for this comment. This experience was so difficult, and this disease is so devastating for victims and their families. You’re right–our teenage years can exacerbate problems and crises and make things so much more difficult to navigate. My grampa was such a good guy and it was so tragic that this disease stole his essence from him. Thank you so much for your kindness and encouragement. When I read your comment, I went back and read my essay again and it was hard to bear in a few places, the memories are still so strong. It was my hope that by sharing my experiences, perhaps others would know they’re not alone in dealing this this disease. If something I write can help someone else, it’s worth the pain of sharing my experiences. Thanks again for such a nice comment. It made my day. 🙂

      Liked by 1 person

    2. Many thanks. Despite these sad memories, I do have plenty of wonderful memories of my grampa. And you’re right–he would certainly understand. He was that kind of guy, never held a grudge, always had a good word for everyone, always smiling and laughing. He would understand. Thanks so much for your comments today. Truly appreciated. 🙂

      Liked by 1 person

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