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✨Memoir Spotlight✨— “Sensing The Rhythm: Finding My Voice In A World Without Sound” by Mandy Harvey

Mandy Harvey is my favorite female singer. She is also deaf. When she published her memoir in 2017, I was ecstatic. I want to share it with the Mighty Readers!

The inspiring true story of Mandy Harvey—a young woman who became deaf at age nineteen while pursuing a degree in music—and how she overcame adversity and found the courage to live out her dreams. When Mandy Harvey began her freshman year at Colorado State University, she could see her future coming together right before her eyes. A gifted musician with perfect pitch, she planned to get a music degree and pursue a career doing what she loved. But less than two months into her first semester, she noticed she was having trouble hearing her professors. In a matter of months, Mandy was profoundly deaf. With her dreams so completely crushed, Mandy dropped out of college and suffered a year of severe depression. But one day, things changed. Mandy’s father asked her to join him in their once favorite pastime—recording music together—and the result was stunningly beautiful. Mandy soon learned to sense the vibrations of the music through her bare feet on a stage floor and to watch visual cues from her live accompaniment. The result was that she now sings on key, on beat, and in time, performing jazz, ballads, and sultry blues around the country. Full of inspiring wisdom and honest advice, “Sensing the Rhythm” is a deeply moving story about Mandy’s journey through profound loss, how she found hope and meaning in the face of adversity, and how she discovered a new sense of passion and joy.

Happy reading! 📚💓

#themightyreaders #Deafness #HardOfHearing #EhlersDanlosSyndrome #Fibromyalgia

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What is it like to lose your hearing as an adult?

What is it like to lose your hearing as an adult? Not older, but in your 30’s or 40’s?

You grow up hearing fine. Communicating in the language you were raised with (or others you learned as you grew up.) Then all of a sudden you notice you are having a harder time hearing others. Sounds around you are more muffled and difficult to understand. So you go to an audiologist and you are told that you have hearing loss. Not minor but significant enough to need a hearing aid. But what if you don’t want one? Most insurance for adults does not cover a hearing aid. They don’t consider a hearing aid a necessity. Hearing is a necessity but the equipment needed to hear when you lose your hearing is not? Where does that leave you?

The cost out of pocket for a hearing aid can range from $300 to over $1500 or more per ear depending on your needs and where you obtain them. If you are lucky you have benefits to cover the partial cost, but even then that could be hundreds of dollars or more. Most adults cannot afford that cost.

What about the ability to learn sign language to help? That’s a great thought but finding somewhere to learn it is the trick. Most hospitals offer interpreters for those who are already Deaf, but not classes to learn for those who are going or are Deaf. What about adults who prefer signing over hearing aids? What is available for them? Most colleges offer sign language, but the cost could be overwhelming and the classes hard to get into as younger students take the class for their chosen language.

I started noticing hearing loss around 2018-2019. I struggled with hearing someone talk to me in their normal tone from only 10 feet away in a quiet room. Then it progressed to struggling when someone had their back to me in a quiet room, to pinpointing the voice of someone talking to me in a crowded room. In public places crowds are inevitable. Even outdoors, the voices carry to a point where hearing people even next to me became a challenge. So I got my hearing tested initially in 2019 and there was some hearing loss, but not significant enough to warrant assistance. So I let it go. By 2021 it was noticeably worse. Something had to be done.

I did another hearing test and at that point I was told it was significant enough to need a hearing aid in one ear, but possibly in both. I was 44 years old. That was not something you want to hear at that age. I did not want a hearing aid. Yes it would help, yes I understood it was a necessity, especially in my line of work as a paraeducator working with students who are moderate to severely disabled. So I got one. The cost was a lot for a single parent to take but my insurance did NOT cover it. I, thankfully, got a discount thanks to union benefits but it was still well over $1,000.

So what was my next step? Preferably I would rather use sign language. I knew some thanks to the classes I took in college but that had been 20 years prior and the sign I knew from teaching my son sign as an infant wasn’t enough for communication so I was stuck using the hearing aid. It was small, discreet and blended in with my hair. But still, I had to wear one. But I noticed how much louder my job was with it on and turned on, so I stopped turning it on at work and just hoped for the best.

Then came students who were non-verbal that used AAC (augmentative and alternative communication) and who signed as well. I was finally able to put my signing to use again. Then I learned more and more. I realized how much I preferred it but not many people at work or even at home knew it. My daughter understood it, which helped in public for me to communicate, but she responded verbally due to her struggling to be able to sign.

Now to today, almost 6 years after I discovered my hearing loss. I wear a hearing aid in one ear, though I rarely turn it on but I wear it. I now work in a classroom with a teacher who understands my hearing loss and another staff member within my class has hearing loss as well. Where I am a 1:1 with a student who wears a Cochlear Implant and signs. So I can work on signing and learning more and more and I can communicate with my student verbally and in sign language. But that doesn’t help me outside of work. I’m expected to hear, which I’m still doing but the hearing loss is getting more and more noticeable. Enough that my bluetooth while talking on the phone is at full blast and it’s still a struggle. It’s enough that I use closed captioning when I Facetime on my phone or watch a tv show or movies on my computer. I am getting my hearing retested in a couple months (the soonest I could get an appointment.) I’m expecting more loss in my right ear as my left one currently has the most loss. Then will come the decision. Do I get another hearing aid or let it go? Do I want the expense of the hearing aid? Or do I find a resource for learning to sign and become more fluent than I currently am?

So I have some choices to make. Do I just decide to accept that I, as an adult with 2 kids (15 and 20) am losing my hearing and get another hearing aid OR do I accept what is happening but refuse to use another hearing aid and see how I can function without one? Not many people in my life, besides some people at my job, both staff and students plus my daughter (20) know how to sign. Others, namely my boyfriend, are trying to learn to make things easier on me. Then, finding somewhere that I can learn to become more fluent is the trick. There are online classes, but very few in person ones. Sure, I could learn easily online but I would much prefer somewhere closer to home to learn in person.

All I know is, I am an adult who is losing their hearing and struggling with how to cope. There are decisions I have to make and figuring out the right one for me is the trick.

#HardOfHearing #SignLanguage #adultswithautismandadhd

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Hi! I’m new here #AcousticNeuroma #Fibromyalgia #Diabetes #MDD #PTSD #Anxiety #Deaf #HardOfHearing #ChronicFatigue #chronicvertigo

Yes, I have all those issues and more. I just can’t remember all of them! LOL! 😆 I’m single sided deaf from surgery to remove my acoustic neuroma in 2009. They went through the ear and also pushed aside my brain to cut most of the little bugger out. They cut my balance nerve. The other side was supposed to pick up & stabilize me, but it’s lazy. I’m still unsteady after 14.5 years.

My most recent dx’s are chronic kidney disease stage 3a (I can’t remember if it’s a or b. It’s the least affected one. I’m working on reversing it.), C-PTSD from 19 years of raising our 2 kids from Russia (both alcohol affected by birth moms so they have permanent brain damage, delayed development, learning disabilities, ADHD, PTSD, extreme impulsive anger issues & more.) , precancerous colon polyps and diverticulosis. Yeah, fun stuff.

I decided to join this group because of the many different diagnoses I have. Plus my kids having many dx’s too. So, HI! 👋🏼

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I need #Prayer

Hello, I just joined. I’m Laurel.

I had #Surgery on Wednesday for a #Cataract in my right eye. I had surgery on my left eye 2 weeks before. I have #Fibromyalgia , #chronicvertigo , #Deaf left ear and #HOH #HardOfHearing in my right ear, #MDD , #Anxiety , along with many other medical issues. My left eye was nice & easy. My right eye got a scratch on it in the first 24 hours, It has yet to focus. I have antibiotic eye drops along with the 2 anti-inflammatory drops. So many drops!

I want my sight back so I can drive our daughter around. We #adopted our 2children from Russia in 2004. Our daughter has #FAS (fetal alcohol syndrome). She is afraid to drive, so she still lives with us. Without sight, even with glasses, I can’t drive Gabby around. Please #Pray for my sight to become sharper.
Thank you 😊

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#CheckInWithMe #Disability #Deafness #HardOfHearing

COMIC STRIP
A Day in the Life of a PWD (Person With a Disability)

Frame 1:
A woman and her boyfriend are chatting with his friend.
FRIEND: ...so I said "I didn't know that was actually a thing!"
The boyfriend laughs.
WOMAN: Oops, could you repeat that? I'm hard of hearing.

Frame 2:
FRIEND: Oh, nevermind. It's not important.

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#CheckInWithMe #Disability #Deafness #HardOfHearing #Ableism

COMIC STRIP
A Day in the Life of a PWD (Person With a Disability)

Frame 1:
A hearing impaired cashier is ringing up a woman's groceries. A man approaches.
MAN: Ya know, it's disabled people like you who take away jobs for normal people!

Frame 2:
CASHIER: So, should I quit, and let your taxes pay for me Disability benefits?
MAN: Hell, no!

Frame 3:
CASHIER: Okay...should I live on the street, and beg to survive?
MAN: Well, you don't hafta do that either...

Frame 4:
CASHIER: Okay, Sir, you've convinced me! I'll pack up my stuff and move into your place tomorrow!
The woman laughs.

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Auditory Processing Disorder

Has anyone had any luck with hearing aids, ALDs, or literally anything else helping them hear and understand people when they're talking?
I just received the Nuheara IQbuds² Max that I ordered. They're supposed to separate speech from background noise but no luck, so far. #AuditoryProcessingDisorder #CentralAuditoryProcessingDisorder #APD #Hearing #HearingImpairment #HearingAids #HardOfHearing

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I am in the hospital. I Have Cancer. #Encourageme

Hello, Mighty Warriors! After being treated by my GI for a horrible IBS-D flare for 4.5 months, I was admitted into the hospital yesterday evening. As it turns out, I have cancer that has mestastized to my liver.

Two weeks ago, I became severely dehydrated and my husband took me to the ER. Through labs and a CT scan, I learned I had some type of liver disease. Yesterday, I had the recommended MRI and discovered it was cancer that had mestastized to my liver. Today, I’ll have a liver biopsy and more labs to find out where the cancer is originating from. It’s hidden. I am also expecting a visit from an oncologist later. How did I get here? Is there anything I could’ve done better? Did I not accurately describe my weakness, horrific stomach cramps, burning, spasms, and explosions in the bathroom? Was my 54 lb+ weight loss not enough to warrant more action earlier? What role did COVID-19 play? I ask because other doctors who would only see me virtually because of my chronic diarrhea (a symptom of COVID-19). I keep replaying the last 4-5 months.

One thing’s for sure, I am thankful my husband finally took me to the ER, which got the ball rolling. This morning, I am preparing for the fight of my life. The hospital allows no visitors but docs have asked for an exception for my husband since I am hard of hearing. It’s very difficult to hear anyway and even harder with a “masked” healthcare team (who, by the way, have been wonderful and understanding). I really need him here with me. It’s a double whammy to get this news and then be whisked away.

Your thoughts and prayers are much appreciated.

#IrritableBowelSyndromeIBS #Fibromyalgia #MyalgicEncephalomyelitis #HardOfHearing #HearingLoss #Cancer #LiverCancer

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