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.

About wendiwendy

This was my original info in 2008: I'm a newly-deafened adult. I'm still getting used to the sudden silence, and I want to talk in the only manner where I can still hear my voice...in print. Now: I'm a bionic woman and I can hear myself roar!!

Posted on March 13, 2014, in Cochlear Implants & Hearing Loss, Medical Visits, Memory Lane and tagged , , , , , , , , . Bookmark the permalink. 5 Comments.

  1. Wowsa. Your post made me think back to when I first realized I was going to go deaf. The first audiologist I saw told me she though I had Sensorineural hearing loss and that it would be progressive. So even though I wore two analog HA’s, I had about 10 years to get use to the fact I was going deaf. I religiously got my hearing re-tested every year – or more often if I thought I had a sudden dip. The results showed a steady decline. I do remember the first time I realized I couldn’t hear on the phone anymore – my amplified phone! I remember being pretty devastated when I realized in sign training class that I would not be able to be an interpreter anymore. The last time I sat “in the chair” when I was done with my part I went to the bathroom and cried. Why do we remember these heart wrenching dates, episodes, etc.? I think it is because hearing DOES matter. People act like “Oh… you have a hearing loss. So what? I have knee pain”. Perhaps it is because like Helen Keller said… she would rather be blind than deaf. “Blindness separates us from things, but deafness separates us from people.”

    • What a great comment, Denise! (All of your comments are great, btw – I just sometimes forget to respond, regretfully.) You are so right, losing your hearing is traumatic in such a different way compared to other afflictions. I really, really felt alone and scared. *hugs* to you!

  2. I think there is a real need for audiologists and ENTs to see these stories and get a glimpse of what it feels like to be told you have a hearing loss (at whatever degree). It’s so scary and it would help so much to have some reassurance and support at this time when you have to cope with receiving the news. Thank you, Wendi, for sharing your story.
    Sarah

    • This is illuminating. You persevered, and I agree, audiologists and ENTs need to see these types of stories.

    • I wholeheartedly agree! I used to talk about this a lot with my husband when I went deaf in 2008, how nobody offered me any resources to cope with suddenly having no hearing. They just focused on the hearing tests.

      Since I went to the same doctor I eventually found in 1993, they were at least kind and comforting. But I expected the audiologist to give me a list of resources (support groups, how to get a free captioned phone or TTY, other assistive aids for things like the doorbell and alarm) and they didn’t — I found all of that on my own.

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