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You’re Deaf – Now What?

Each time I lost my hearing (1993 for my right ear, 2008 for my left), I was surprised and disappointed by one thing: I was not offered any type of support for dealing with such a monumental loss. And this is not to say anything bad about my audiologists and doctors, because I really like them. But other people have mentioned it too, the lack of resources, information and support for late-deafened adults, or anyone suffering from sudden loss of hearing.

In 1993, the only thing offered to me was a different type of hearing aid, a bi-CROS that brought in the sounds from my newly-deaf side. I was thrilled with my new hearing aids, so no complaints there. But I had lost so much hearing that I could no longer hear my alarm clock for work each morning. I had NO idea that there were ALDS (assistive listening devices) for hearing loss, beyond an amplifier for the phone. The audiologist didn’t tell me about them. My husband at the time was the one who talked to the audiologist and found out about an alarm clock that would shake the bed to wake me up. I mean, they sold them right in the office – why wouldn’t she offer that information, knowing I had just lost all the hearing in my right ear and had a profound loss in the left?!

The internet was in its infancy in 1993, so the alarm clock and new hearing aids were the full extent of support I received. In 2008, my loss was much greater because I was now completely and totally deaf. They couldn’t offer me hearing aids. I didn’t know sign language, and neither did any of my family or friends. Yet again, once I got the hearing test that confirmed I was hearing absolutely nothing, I didn’t receive any information on how to deal with being completely deaf. That just blows my mind.

They put me on steroids to see if my hearing would come back; just like in 1993, they didn’t help. When I went back in for the follow-up visit, I was prepared. Thanks to the internet, I had done my own research. I knew I could receive a free TTY if the doctor signed off on it, and I knew about cochlear implants. I was the one who asked if I could get CIs (although hopefully if I hadn’t immediately asked, they would have offered it as an option). I was the one who asked if they could help me get the TTY. I found the state lending program that also gave me a flashing light for the phone (not that I was using the phone at that time).

Can you imagine losing all your vision, going to the doctor and having them say, “Well, yep, you’re blind,” and then sending you on your way? You have to hope they’d give you a list of resources for cane training, a service dog, learning Braille, programs to voice text for you, etc.

I didn’t find online sources of support until 1997, when I suffered from a horrific ear infection in my good ear. I spent almost two weeks without my hearing aids, using just the very limited hearing in that ear – it was already profoundly deaf, and I spent much of that time with my ear filled with medicine and covered with a cotton ball. I was a single mom at that time, and I was scared at how close to ‘deaf’ I really was. I had been able to fool myself into complacency with my hearing aids, and not having them to rely on really scared me. So I started searching for hearing loss support groups, hoping to meet other people like me. I have never interacted on a regular basis with someone that had hearing loss, so I didn’t have any real-life support of that type.

I found the Say What Club, and they are still active today. Back then, it was just one or two mailing lists; you signed up and they assigned you to a list, and then you would receive everybody’s emails. That was where I first learned of CIs and many of the ALDs I’m familiar with today.

I also joined SHHH, which later became HLAA (Hearing Loss Association of America), and ALDA, the Association of Late Deafened Adults. These are large organizations that have websites with lots of information, newsletters/magazines, and yearly conventions. Nowadays I am also a member of Illinois Cochlear Implant Chapter, which has local meetings every other month.

A view of my left CI (purple metallic color)

A view of my left CI (purple metallic color)

If you’re dealing with hearing loss, whether it’s recent or not, it can really help to be part of an online support group. I love email because it eliminates communication barriers; real life meetings are also nice because all the ones I’ve been to are captioned with CART. Now that I have my CIs, I usually don’t need CART to understand at a meeting, but it is still hit or miss whether I’ll understand a question from someone in the audience. CART captions everything being said, and it’s nice to utilize it for those soft-voiced questions or for a speaker with a heavy accent.

Losing your hearing can really isolate you. It’s tempting to want to stay home and avoid social interaction because it’s so exhausting, trying to read lips and follow conversations. It can be disheartening to be part of a large group and have no idea why everyone is laughing. Being part of a support group means that these people know what it’s like to have a hearing loss, and they don’t mind doing whatever needs to be done to be understood. At conventions, you’ll see people facing each other and reading lips, signing, writing notes. I still remember our first ALDA convention in 1999, when we joined others for dinner and dancing. We didn’t know how those who were deaf could follow the beat, until some friends showed me and Dave that if you hold onto a balloon, you can feel the vibrations of the music. How cool is that?!

Hopefully audiologists will catch on and realize that more needs to be done to support a newly-deafened adult. I would be curious, if anyone out there is a parent of a child who was diagnosed with hearing loss, if they were offered sources of support and help by their audiologist. Is it just adults who are sent off to deal with this on their own?

The First Time I Went Deaf

For some reason, spring is not kind to my hearing.  Every time St. Patrick’s Day rolls around, I remember the first time I went deaf.  Well, the first actual hearing loss that I suffered happened when I was too young to remember; I wasn’t born with a hearing loss, it was discovered when I was four.  A couple years earlier I’d had roseola and was hospitalized with a high fever, and the doctor speculated that was what caused my initial hearing loss.

But I wasn’t deaf, just hard of hearing.  More so in my right ear than my left, but I could hear sounds in both ears.  (I wore a hearing aid in my right ear.)

Spring, though, has brought deafness to me on two separate occasions.  I’ve written quite a bit about the hearing loss I suffered in mid-April 2008, the one that left me completely deaf and prompted me to start this blog.  As traumatic as it was to suddenly lose the rest of my hearing, I think the first time I lost my hearing as an adult was worse.

I don’t remember the exact day, just that it was very close to St. Patrick’s Day.  I remember taking a rubber stamping class that focused either on making cards for spring, or maybe cards to celebrate St. Pat’s and Easter.  In any case, the hearing in my worse (right) ear was fading and it made the class a real challenge.  I didn’t socialize as much as usual because it was too hard to follow all the conversations around the long table where we worked.  Instead I worked on my projects and went home, feeling worried and stressed.

Originally I thought it was my hearing aid, so I took it in to be checked out.  I was really sure this would fix things, so when I was told that the hearing aid was fine, I got a bad feeling.  I didn’t have an ENT, so I went to an urgent care clinic and told them what was happening with my hearing.  They took a look and said I had an ear infection, which was weird because I felt perfectly fine.  They prescribed antibiotics, which I dutifully took even though I didn’t believe the diagnosis.

When the antibiotics didn’t help, I found a local ENT.  This was an older man with not much of  a bedside manner.  He just did a hearing test, looked inside my ear and then told me I was deaf in that ear.  No, he couldn’t tell me why – there was no obvious reason.  Sometimes it just happens.  End of story.  He sent me on my way, furious and confused and devastated.  How had I lost all of the hearing in my ear?!  My hearing loss wasn’t supposed to be progressive.  I never, EVER expected to lose more hearing in my lifetime.

I found another clinic, doctors with a great reputation (ironically, they were the first to do a cochlear implant in Illinois) and made an appointment.  I wanted a second opinion; I wanted answers.  The doctor I saw was kind, patient, and answered all of my questions.  Besides a hearing test, I also had blood work done and a CAT scan to check for an acoustic neuroma.  (Side note:  This was in the internet’s infancy, 1993, and I happened to see on the order that they were looking for an acoustic neuroma.  I had no idea what it was, so I went to library and looked it up.  And proceeded to freak.  A tumor!  I’m going to need brain surgery!)

The CAT scan and blood work came back fine, so I was started on a regimen of steroids to see if my hearing would come back.  In the meantime, I was struggling to hear, to continue doing my job (I did word processing – on a Wang word processor) and communicate with people, mainly my then-husband (this was pre-Dave) and my son.  (My daughter wasn’t born yet.)  I was gripped with anxiety, sure that every day I would wake up and be completely deaf.  I had no idea why this was happening, and no reassurance that it wouldn’t happen again.  I didn’t have an ear mold for my left ear, so I couldn’t wear a hearing aid.  Although I had still had some hearing in my left ear, I already had a profound loss and didn’t know if it was getting worse.

In the end, the steroids didn’t help.  Hearing tests showed that I had lost all of my usable hearing in my right ear and just a small amount in my left, leaving it solidly in the profound range.  I jammed the ear mold meant for my right ear into my left ear so I could hear.  I cried myself to sleep every night.  I felt alone, isolated, and absolutely terrified.

The doctor was kind as he explained that sometimes this just happens and they don’t know why; they call it Sudden Sensorineural Hearing Loss (SSHL).  Maybe it was a virus of some kind, maybe my hearing loss was actually a progressive one and not caused by the fever when I was a toddler – who knows.  Although he couldn’t promise me it wouldn’t happen again, he said it would be very rare.  He recommended hearing tests every six months or yearly for a while, to keep an eye on things.

I don’t remember how long it took for me to stop being nervous every morning when I put on my hearing aid.  For the first couple of years, I would panic when my hearing aid battery died, thinking I was losing my hearing again.  It was embarrassing to wipe away tears after replacing a battery and hearing sound again.

What really helped me calm down was getting new hearing aids.  I got analog bi-CROS hearing aids, which helped me ‘hear’ sounds on both sides.  I had to get used to wearing a hearing aid in each ear, but that wasn’t too bad.  The one on my right ear was just a transmitter, since I couldn’t actually hear in that ear.  But it picked up the sounds on my right side and sent them wirelessly to the hearing aid/receiver in my left ear.  When I first put them on, it was like light flooding a dark room.  I didn’t need an adjustment period; I loved those hearing aids from the first moment I wore them.  Things sounded the way I remembered them, even with no hearing left in my right ear.

It took 15 years for the other shoe to drop, for me to lose my hearing again like I always feared I would after the first time.  When it happened, though, I knew I had no more to lose.  It was a different type of grieving and adjustment, losing all of my hearing, but it was a small relief to stop worrying that it would happen again.

It happened, I survived.

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