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.
Posted on March 13, 2014, in Cochlear Implants & Hearing Loss, Medical Visits, Memory Lane and tagged bi-CROS hearing aids, deafness, going deaf, hearing aids, losing your hearing, psychological effects of hearing loss, SSHL, sudden hearing loss, sudden sensorineural hearing loss. Bookmark the permalink. 6 Comments.