Dementor at the window.

How I Use 'Harry Potter' to Explain My Hearing Loss

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It’s a daily struggle for me to help people understand what it’s like to live with and have hearing loss. I try to explain that it’s not as simple as missing sound, and that you can’t fix it by ramping up the volume on the phone or TV. I try to help them see that it’s not just the sound itself but the environment the sound happens in. At the end of the day, they often don’t really get it.

But perhaps I have one of the strangest solutions around. As a woman who grew up with fantastical world of J.K. Rowling’s Harry Potter books, one of the best ways I’ve found to explain my hearing loss and what it’s like to live with it, is to compare it to the dementors we encounter in “The Prisoner of Azkaban.”

Curious? I’ll explain.

First off, let’s classify me: a hearing-impaired wizard with muggle friends, fourth-year Gryffindor (though some online quizzes have also placed me in Slytherin) who requires a special device to enhance my hearing (what muggles call hearing aids). No spell has yet been created to solve hearing loss at this time.

Now, for the dementors and how they are exactly the perfect metaphor for untreated hearing loss.

Muggles can’t see dementors, only magic folk can. Hearing loss is an invisible disability. Only those with it who know the signs to look for can pinpoint someone in a crowd with hearing loss. Otherwise it’s virtually undetectable. And because of this, it’s often harder for others to understand the magnitude of its impact on a persons’ life.

Dementors feed on peace and happiness. Hearing loss can do this as well. As hearing loss worsens, it affects your ability to hear and understand speech and sound in multiple environments. Chatting with friends after work at the local pub can become the equivalent of trying to hear with baby Mandrakes screaming – impossible. And as you miss joke after joke, can’t follow along at the movie theater and generally just feel “left out,” you can start to feel the dark cloud of social isolation descending. And just as a dementor can take all your joy and happy memories away, untreated hearing loss can replace smiles with tears and fond moments with bittersweet regrets.

Fighting a dementor is exhausting work! Hearing loss can make you tired by mid-day. Dementors require a powerful Patronus Charm fueled by an exceptionally emotional memory. Hearing loss requires your brain to work overtime as you spend energy lip-reading, being overly attentive and try to process and construct meaning from half-understood words and phrases. Your brain and your ears are no longer working together like before. Instead, just as Harry’s energy flagged as he fought more and more dementors, my energy drains faster and faster when I’m forced to make sense of invariably random sounds, words and phrases that are often not even what I think they are.

Dementors cannot be destroyed completely. Hearing loss will never go away. You can send dementors away with a Patronus Charm and remove the feelings of sadness and despair, but no magical spell or potion exists to return one’s hearing. Hearing loss is permanent, and as the ears are exposed to loud, damaging sounds, one’s hearing is hurt. Other factors beyond noise exposure also can contribute to this irreversible condition — age, associated health conditions, medication (ototoxicity), genetics, ear infections or physical damage to the ear, and more. While you can send dementors away and feel happy again, once you damage your hearing, even just a bit, you can’t go back.

Every person has a unique Patronus Charm to fight dementors. Every hearing loss is different, and is treated differently. Harry has a stag. Luna has a rabbit. Ron has a dog, and Hermione has an otter. Each of these Patronus figures are unique to one witch or wizard. Hearing loss is the same, akin to a fingerprint. Each is unique in the frequencies lost, the sounds that are hard, the treatments that work. No one hearing loss is the same. No one hearing loss can be treated the same. Each requires a hearing aid with personalized programming, fit for one person’s hearing loss, ears and lifestyle.

Maybe one day a doctor will invent a potion to remedy hearing loss, but until then, I’m going to keep using my incredible hearing aids (the muggle Patronus Charm for hearing loss) to combat hearing loss and thrive in life, all the while waiting for my letter from Hogwarts. Even though it’d be about 15 years late.

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Thinkstock photo by Elisabeth2010.

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What I Would Tell Myself a Year After Experiencing Sudden Hearing Loss

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It came on suddenly, and the main issue was the dizziness. I was unsteady on my feet and had to work at moving evenly. There was exhaustion and brain fog, yet no fever or head-cold or cough. Strange, I thought. What could be wrong? I never had anything like it before. But since I could still function, drive and do my work, I figured it was some random, passing thing. I would muscle through it.

The second day my left ear started ringing. Bizarre, I thought. I went to urgent care for a blood draw; everything came back normal. I visited my naturopath who suspected anemia and/or thyroid challenges (both of which can cause tinnitus). I started on supplements. I saw my primary care doctor. I started feeling better. Within two weeks my symptoms were virtually gone except for the ringing.

I made an appointment with an otolaryngologist (ENT) but they were short-staffed and I was a new patient, so there was a wait. By the time my appointment date rolled around I felt completely fine. The only holdover from my strange bout of unwellness was the tinnitus in my left ear. How, I asked my ENT, could he help me get rid of it?

He gave me an audiogram, and as we sat discussing the results, I wasn’t at all prepared for what he said: I had hearing loss. “Your nerve has been damaged – likely as a result of a virus. Your brain is generating the ringing, trying to compensate for the hearing it lost. Sometimes steroids can reverse the nerve damage. But it usually only works if you start it within 10 days of the hearing loss. If the steroids don’t work, then I’m afraid the damage is permanent.” It had been more than a month since my episode.

I was stupefied.

My mother had a stroke at age 58, and there’s a drug called TPA that can reverse many effects as long as it’s taken within three hours of the stroke. Thankfully, my mom was able to get the TPS within the allotted time-frame and made a near complete recovery. Taking steroids after sudden hearing loss is similar — the only hope of reversal comes with treating it quickly. Once the window is closed, it’s closed.

I hadn’t known that, of course. And none of the health practitioners I saw before the ENT knew it either. In fairness, I didn’t even realize I had hearing loss; I just thought my ear was ringing.

So my ENT’s words sounded unbelievable to me. Hearing loss? Possibly permanent? I’d never had hearing issues before. I’d just celebrated my 40th birthday two weeks before the dizziness spells kicked up. It seemed bizarre and wrong that I’d suddenly go partially deaf.

But I did; I had sudden sensorineural hearing loss (SSNL). The steroids did nothing to restore my hearing, which meant the hearing loss and the tinnitus were for keeps. Before I knew it, I was sitting with a sweet, sympathetic audiologist getting fitted for a hearing aid. Tears slipped during the fitting as I struggled to hold them back. It all felt surreal.

This month marks a year since my sudden hearing loss; here’s what I’d say to Last Year Me if I could go back and talk to her.

• The sudden-onset ringing is from hearing loss, not secondary to something else — get your butt into an ENT immediately. If you can’t get in fast enough to one who has been recommended, find another one. Get a babysitter and go sit in a waiting room till someone will see you if it comes to that.

• You can do this. Yeah, you never planned to suddenly go partially deaf in one ear, but many of life’s adventures are unplanned. This may be hard right now, but you can handle it. Give yourself some time to be shocked and grieve till you’re ready to take a deep breath, make the best of it and move on.

• Wearing a hearing aid isn’t that bad. It really isn’t. You put it in right when you wake up, and after that you barely notice it. Most people can’t tell it’s in there either. Subtle, effective, easy to forget about.

• The folks who work in the ENT field are some of the nicest, most supportive people you’ll ever have the privilege of meeting. (This is true in Virginia, Massachusetts, and Greece – all places I’ve worked with ENTs in the past year). Knowing them will enlarge you in ways you wouldn’t expect. Let that be a silver lining.

Spread the word that sudden sensorineural hearing loss (SSHL) is a thing – sudden, out-of-the-blue hearing loss can happen to five to 30 in 100,000 people – and has a chance of being reversed with prompt treatment.

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Laura Friedman - Hearing Health Foundation

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Laura Friedman lives with hearing loss and is an advocate in the community.
 

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5 Ways to Make Holiday Parties More Hearing-Loss-Friendly

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The holidays can be rough for people with hearing loss. Seeing friends and family is nice, but holiday gatherings tend to be larger and louder and often occur one after the other. It can be exhausting and overwhelming, and even depressing to watch others celebrate when you feel like you cannot participate in the way you would like.

It can be hard on those who love us as well. They don’t want to see us struggle or be unhappy, and they can get annoyed if we don’t want to partake in the festivities. Today’s post is for them. Please share these tips with them so you all can enjoy a happier holiday party season together.

If you are sharing your holidays with someone with hearing loss, here are five things you can do to make your holiday gatherings more hearing-loss-friendly.

1. Break up party spaces into smaller areas. Even at a large party, certain areas can be set aside for quiet conversation and other areas for louder pursuits. Breaking up the space will also cut down the overall level of background noise.

2. Turn the music down and the lights up. People often dim the lights and crank the music at parties, but both make it difficult for people with hearing loss to hear and lip read. If you can, pick a quieter soundtrack and a slightly brighter glow for your event.

3. Keep an eye out for the loner in the corner. It can be challenging for someone with hearing loss to hear well in a cocktail party setting. Rather than risk faking it, someone with hearing loss may go sit to the side, staying out of the fray and watching others interact from a distance. If you see someone you love on the sidelines, seek them out for a one-on-one conversation or invite them to join you in a quieter room.

4. Use a microphone for speeches. Holiday parties are often replete with toasts and speeches. If you have them, use a microphone so all party guests can enjoy them. If you really want to get fancy (for large parties), connect the microphone to a hearing loop so those with hearing loss can listen in through their t-coil.

5. Have realistic expectations. Even when everyone is trying their best, it just might not be possible for someone with hearing loss to hear well. Bring your sense of humor and understand if someone with hearing loss needs to take a break in a quieter room for some period of time.

Readers, what suggestions do you have for making holiday parties easier for people with hearing loss?

A version of this post first appeared on Living With Hearing Loss. Living With Hearing Loss is also on Facebook and Twitter.

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Why I Dread Getting My Hearing Tested But Do It Anyway

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I dread getting my hearing tested. First of all, it is never fun to be shut in a quiet room knowing you are about to fail a test. And it’s not because I didn’t study hard enough! It can also be frightening to see if my hearing loss has progressed since the last test. Knowing my family history, there is a high risk that my hearing loss will continue to worsen over time.

But the hardest part is often the tinnitus. How am I supposed to take the test when I already hear so many sounds of my own making? I find myself wondering, “Is that tone I hear part of the test or is it my tinnitus?”

My tinnitus usually sounds like a fluorescent light bulb, but it can also manifest as a sustained high pitch tone. It would be easier to edit out the tinnitus from the hearing test if it always sounded the same, but many times it has a unique sound quality that is hard to identify. Plus, my anxiety level is always a little elevated, which probably kicks my tinnitus into overdrive.

I am typically an eager test-taker — I always loved tests in school (don’t laugh) — so it is just in me to try to do well on the hearing test. Perhaps that makes me a bit overzealous since I tend to have many false positives, which makes my hearing test reliability fairly low. When I review the results, I always wonder if any stability in my hearing test is real or if I just got lucky this time with the false positives. I guess I will never really know.

Despite these challenges, I have gotten my hearing tested every couple of years for the past 20 years. In this way, I have been able to watch as my high pitch hearing went from perfect to a mild loss, and my mid-range frequency hearing dropped further into moderate loss territory. My low pitch hearing has remained in the mild loss range for much of this time.

I have one of my father’s old hearing tests from when he was in his 60s. Since my loss is genetic, I wonder if this will be my fate. His mid-range and high pitch hearing were deep in the severe loss range while his lower frequencies were in the moderate loss area. I only have the one test, so I don’t know how severe his loss was at my age, but it is hard for me to imagine what my hearing would be like with such a steep drop off in my higher pitches, even 20 years from now.

Despite my trepidation about the tests, I think knowledge is power, and so I continue to get my hearing tested regularly. I also try to keep abreast of new developments in hearing aid technology and stay current on the leading scientific research being done in this space. The good news is that advancements are being made consistently, and as my hearing continues to worsen, there will likely be even better technological and/or biological products available. Let’s hope so.

Readers, do you dread getting your hearing tested?

A version of this post first appeared on Living With Hearing Loss. You can also find Living With Hearing Loss on Facebook and Twitter.

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The 10,000 Moments My Husband Supported Me as I Lost My Hearing

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I want to tell you about 10,000 moments. But I’m not sure how.

Each moment by itself would be too small to see. Too fleeting. Like snow flakes on the lawn. How could one moment be singled out for description, made more special than the others, emblematic? It wouldn’t do justice to the whole.

But to describe 10,000 moments skims over what each moment meant, the choice that was offered each time and the decision  that was made each time. Without fail. Day after day. Year after year.

In the face of my increasing hearing loss in the past few years, my husband made the choice to be kind.

He was kind when he had to repeat himself dozens of times in a day. He was kind when we had to stop having our regular daytime phone conversations. He was kind when I misunderstood what other people said and embarrassed him. He was kind when my frustration blew the top off the house. He was kind when other people would have put their head in their hands and just given up.

He took sign language classes with me and then concocted his own sign language just for us. He’d sign across a room, signaling, could I hear? Do you want to leave? He’d run interference for me with sales people in stores, doctors’ offices, anyone who insisted on a phone call.

He would interpret for me, restating what people whose voices were in the wrong range for me to hear said. He’d keep an eye on me all the time to see if I was getting it or not. “Did you get that?” his eyes would ask. Sometimes, when I did, I’d snap at him. “It’s not so easy knowing what you can and can’t hear,” he’d say, explaining himself but never really getting mad.

And throughout, he insisted that there was no reason I should stop working, no call to close my business. I’d complain about the difficulty of working with groups and he’d act surprised that I couldn’t handle it, knowing that indulging my self-doubt would only deepen it. He knew that my work was part of my core. Leaving it would be a big defeat, a terrible loss, the beginning of my disappearance.

Once, when we did argue about hearing, I told him that he had no idea how hard it was to deal with hearing loss. Oh, he said back, you have no idea how hard it is to be married to someone with hearing loss. I always wanted to think my frustration trumped his. Now, with my cochlear implant bringing better hearing every day, I am not so sure. The effect of my hearing loss on him was way bigger than I ever wanted to think.

I know this to be true as I reflect back over the past few, very hard years. I would not have survived the isolation and self-doubt that comes from hearing loss without my husband. It’s that simple.

My husband saved me.

At night, in the dark, before I go to sleep, I always tell my husband that I love him. “I love you,” I say, even though without my hearing aid and cochlear implant receiver – all my various pieces of equipment – I cannot really hear myself talk. But he hears me. But instead of answering back, because he knows I can’t hear him, he taps my arm.

Tap tap tap, tap.

Follow this journey on Red’s Wrap.

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