I was probably no older than three the first time I saw someone wearing hearing aids. It was, for some reason, one of those unexplained lucid moments I remember so clearly as if it happened just recently. Even now the details are so clear I can see the colors of the walls, faces, the checker's hands ringing up items. It seems as if I was supposed to remember.
I was sitting in a shopping cart at the A&P. Mama and I had pulled up at a check-out station behind another woman and her son. I watched the checker for awhile, mama licking her stamp book, then noticed the little boy standing ahead of us quietly. He was wearing some sort of contraption with big black things over his ears. I had seen something like this in the winter--ear muffs. But it was summer and these ear things were not knitted ear muffs. They were made of metal and rubber, and had electrical wiring. I asked mama, maybe in too loud of a voice, what those things were on that boy's ears. I could tell at once I had embarrassed her. She shushed me, then explained quietly he could not hear well, so he had to wear something called hearing aids. Then she smiled apologetically to the other mother.
Right then a feeling came over me that I would someday be just like that boy. So I told my mama. She laughed and said, "No, your hearing is just fine. You will never have to wear hearing aids like him." Though I knew as she said this she was wrong, I kept it to myself. I wanted to believe her.
I think this was my first ever premonition. I've had a few others since. Always I remember them in sharp detail, just like I remember this one so vividly. It wasn't long after that I came down with the measles, though my hearing loss wasn't immediately noticeable. In fact it wasn't even diagnosed until decades later. However, the official word is the measles did my hearing in. Who knows? I could have contracted it right off that shopping cart-- or maybe not. The sickness and what came after is much more muddled in my memory.
I am not exactly sure when I first noticed the hearing loss. When you are young, you often assume others are exactly like you. Looking back I realize I had lots of problems. Ear pressure caused tremendous pain while swimming under water, or driving over mountain passes. I always had tinnitus (ringing in the ears) off and on. None of the schools I went to performed routine hearing screenings. As a teenager, I began to notice a plugged ear feeling and the tinnitus increased.
At nineteen the tinnitus got so bad I decided to see a doctor, and that was when my hearing loss was first discovered. At that time my audiogram made a cookie bite pattern in the speech ranges. My doctor suggested the hearing loss might be "allergy related." I swear most every incurable ailment was blamed on allergies back in the 70s. I pursued allergy treatments for awhile. When it became clear they didn't work, and my hearing continued to decline, I gave up. My hearing has continued to decline into what is known as a "ski-slope" loss--profound in the speech tones-- though my low frequencies are still good.
Everyone wore surgical masks in the dental office where I worked when I was in my early twenties. So I switched to a desk job, which was easier than admitting I couldn't understand people with their lips covered. Then I realized I couldn't hear on the phone well. Years went by before I conceded that I needed to do something. By this time I had a small baby, and avoided most social situations because of the hearing difficulties. I couldn't hear movies. TV Captioning hadn't been invented yet, and phone communication had become next to impossible.
Buying my first pair of hearing aids in my twenties was bittersweet. At last I could hear-- somewhat. Hearing aids are ONLY aids, they are not like glasses in that they do not provide a perfect correction. There is still a lot of distortion, missing sound and amplified sound where you do not need it. Hearing aids are more comparable to prosthetic limbs than glasses. Still, I was most amazed by my baby son's sweet cooing voice. I was hearing sounds I had never heard. That was miraculous!
Then my audiologist handed me a maintenance pamphlet with illustrations of gray-haired, seventy-year-old grandparents on the front, and I feel apart. We all know the stereotype of hearing loss as an "old person's" complaint, but until that point I tried to keep an open mind. Of course, I reasoned, if I had hearing loss, then lots of other young people must have hearing loss too. So I guess I expected more age diversity on the pamphlet. How naive of me! When I saw everyone on the front cover of that pamphlet portrayed in deep wrinkles and gray hair, that's when I realized what an anomaly I was. I cried all the way home. I didn't know one person with hearing aids. I didn't even know any people my parents age with hearing aids.
Emotionally I started crumbling and continued to crumble for the next fifteen years or so. On the outside I managed, I think, but inside I grieved. I didn't know where to turn and there wasn't much support. I felt so isolated. While my friends talked about breast-feeding, childbirth, home decorating and new jobs, I needed someone to talk with about audiologists, ear mold discomfort, parenting with hearing loss, new hearing aid technology, on the job accommodations, and a whole host of other concerns I had about my future with an incurable idiopathic progressive hearing loss. This was, after all, the early 80s. Digital hearing aids had not been invented yet. No one had even heard of cochlear implants. The Hearing Loss Association of America (HLA--formerly SHHH) was in its infancy, and full of retired grandparents who weren't parenting or working. The local chapter was far away and they usually held their meetings at inconvenient times for young people. I didn't fit in. The American Disabilities Act didn't exist yet.
To make matters worse, my hearing was declining at a rapid rate and no one knew why or how to stop it, or how bad it was going to get. Was I going to be deaf by age fifty? No one knew. Just as an example to show how out of touch most professionals were and still are, the first time I went to a psychologist to talk about the support I needed, she suggested I get a job. I look back on this and shake my head. I was grieving. I needed accommodations in order to get a job. I needed a LOT of support. The last thing I needed was someone shrugging her shoulders and telling me to go back to work.
This isn't the first time a doctor has overlooked my hearing loss. Even recently my family doctor, who has been informed numerous times, failed to recognize the impact it might have on other health issues. Just the daily stress of speech reading constantly, and filling in the blanks, guessing, and not being able to communicate effectively with 90% of the population every day, all day long---it's the little things that add up to a huge stress factor. True, she doesn't have a copy of my audiogram. I've made a note to have it sent to her, because every time I go there I have to remind the office staff I'm deaf.
Anyway it has been more than twenty years since that first ineffective series of visits to the psychologist who suggested I "get a job." I would like to take that young woman (me) by the hand to guide her through this awful mess. I wish I could go back in time and tell her it's all going to be OK. Technology is going to get better, she will discover ways to communicate on the phone and without a phone. Computers will be invented and deaf people will "talk" via videophones, email, IM, and phones with words running across a screen. TVs will all be captioned and even some movie theaters will offer it too. There will be laws that employers must accommodate us, and she will eventually get a job with accommodations that suits her. HLA will thrive and become powerful and many young people will get involved. Other support groups will pop up--the Assoc of Late-Deafened Adults (ALDA) and tons of on-line support groups. Some people still don't know where to turn. So I'm advocating. I can't go back in time, but it does me good to help others.
My deaf adventure is the main point of this blog, but since deafness doesn't define me or anyone, there will be lots of other posts in here as well-- just on life--through my eyes-- because blogging is my therapy. If you are losing your hearing or you know someone who is and you find anything in here helpful, then that's GREAT!
I was sitting in a shopping cart at the A&P. Mama and I had pulled up at a check-out station behind another woman and her son. I watched the checker for awhile, mama licking her stamp book, then noticed the little boy standing ahead of us quietly. He was wearing some sort of contraption with big black things over his ears. I had seen something like this in the winter--ear muffs. But it was summer and these ear things were not knitted ear muffs. They were made of metal and rubber, and had electrical wiring. I asked mama, maybe in too loud of a voice, what those things were on that boy's ears. I could tell at once I had embarrassed her. She shushed me, then explained quietly he could not hear well, so he had to wear something called hearing aids. Then she smiled apologetically to the other mother.
Right then a feeling came over me that I would someday be just like that boy. So I told my mama. She laughed and said, "No, your hearing is just fine. You will never have to wear hearing aids like him." Though I knew as she said this she was wrong, I kept it to myself. I wanted to believe her.
I think this was my first ever premonition. I've had a few others since. Always I remember them in sharp detail, just like I remember this one so vividly. It wasn't long after that I came down with the measles, though my hearing loss wasn't immediately noticeable. In fact it wasn't even diagnosed until decades later. However, the official word is the measles did my hearing in. Who knows? I could have contracted it right off that shopping cart-- or maybe not. The sickness and what came after is much more muddled in my memory.
I am not exactly sure when I first noticed the hearing loss. When you are young, you often assume others are exactly like you. Looking back I realize I had lots of problems. Ear pressure caused tremendous pain while swimming under water, or driving over mountain passes. I always had tinnitus (ringing in the ears) off and on. None of the schools I went to performed routine hearing screenings. As a teenager, I began to notice a plugged ear feeling and the tinnitus increased.
At nineteen the tinnitus got so bad I decided to see a doctor, and that was when my hearing loss was first discovered. At that time my audiogram made a cookie bite pattern in the speech ranges. My doctor suggested the hearing loss might be "allergy related." I swear most every incurable ailment was blamed on allergies back in the 70s. I pursued allergy treatments for awhile. When it became clear they didn't work, and my hearing continued to decline, I gave up. My hearing has continued to decline into what is known as a "ski-slope" loss--profound in the speech tones-- though my low frequencies are still good.
Everyone wore surgical masks in the dental office where I worked when I was in my early twenties. So I switched to a desk job, which was easier than admitting I couldn't understand people with their lips covered. Then I realized I couldn't hear on the phone well. Years went by before I conceded that I needed to do something. By this time I had a small baby, and avoided most social situations because of the hearing difficulties. I couldn't hear movies. TV Captioning hadn't been invented yet, and phone communication had become next to impossible.
Buying my first pair of hearing aids in my twenties was bittersweet. At last I could hear-- somewhat. Hearing aids are ONLY aids, they are not like glasses in that they do not provide a perfect correction. There is still a lot of distortion, missing sound and amplified sound where you do not need it. Hearing aids are more comparable to prosthetic limbs than glasses. Still, I was most amazed by my baby son's sweet cooing voice. I was hearing sounds I had never heard. That was miraculous!
Then my audiologist handed me a maintenance pamphlet with illustrations of gray-haired, seventy-year-old grandparents on the front, and I feel apart. We all know the stereotype of hearing loss as an "old person's" complaint, but until that point I tried to keep an open mind. Of course, I reasoned, if I had hearing loss, then lots of other young people must have hearing loss too. So I guess I expected more age diversity on the pamphlet. How naive of me! When I saw everyone on the front cover of that pamphlet portrayed in deep wrinkles and gray hair, that's when I realized what an anomaly I was. I cried all the way home. I didn't know one person with hearing aids. I didn't even know any people my parents age with hearing aids.
Emotionally I started crumbling and continued to crumble for the next fifteen years or so. On the outside I managed, I think, but inside I grieved. I didn't know where to turn and there wasn't much support. I felt so isolated. While my friends talked about breast-feeding, childbirth, home decorating and new jobs, I needed someone to talk with about audiologists, ear mold discomfort, parenting with hearing loss, new hearing aid technology, on the job accommodations, and a whole host of other concerns I had about my future with an incurable idiopathic progressive hearing loss. This was, after all, the early 80s. Digital hearing aids had not been invented yet. No one had even heard of cochlear implants. The Hearing Loss Association of America (HLA--formerly SHHH) was in its infancy, and full of retired grandparents who weren't parenting or working. The local chapter was far away and they usually held their meetings at inconvenient times for young people. I didn't fit in. The American Disabilities Act didn't exist yet.
To make matters worse, my hearing was declining at a rapid rate and no one knew why or how to stop it, or how bad it was going to get. Was I going to be deaf by age fifty? No one knew. Just as an example to show how out of touch most professionals were and still are, the first time I went to a psychologist to talk about the support I needed, she suggested I get a job. I look back on this and shake my head. I was grieving. I needed accommodations in order to get a job. I needed a LOT of support. The last thing I needed was someone shrugging her shoulders and telling me to go back to work.
This isn't the first time a doctor has overlooked my hearing loss. Even recently my family doctor, who has been informed numerous times, failed to recognize the impact it might have on other health issues. Just the daily stress of speech reading constantly, and filling in the blanks, guessing, and not being able to communicate effectively with 90% of the population every day, all day long---it's the little things that add up to a huge stress factor. True, she doesn't have a copy of my audiogram. I've made a note to have it sent to her, because every time I go there I have to remind the office staff I'm deaf.
Anyway it has been more than twenty years since that first ineffective series of visits to the psychologist who suggested I "get a job." I would like to take that young woman (me) by the hand to guide her through this awful mess. I wish I could go back in time and tell her it's all going to be OK. Technology is going to get better, she will discover ways to communicate on the phone and without a phone. Computers will be invented and deaf people will "talk" via videophones, email, IM, and phones with words running across a screen. TVs will all be captioned and even some movie theaters will offer it too. There will be laws that employers must accommodate us, and she will eventually get a job with accommodations that suits her. HLA will thrive and become powerful and many young people will get involved. Other support groups will pop up--the Assoc of Late-Deafened Adults (ALDA) and tons of on-line support groups. Some people still don't know where to turn. So I'm advocating. I can't go back in time, but it does me good to help others.
My deaf adventure is the main point of this blog, but since deafness doesn't define me or anyone, there will be lots of other posts in here as well-- just on life--through my eyes-- because blogging is my therapy. If you are losing your hearing or you know someone who is and you find anything in here helpful, then that's GREAT!
6 comments:
This makes a great read! Keep it up!
I cannot imagine what it would have been like to live without the accommodation's we deaf have today back when. Even though digital hearing aids are a vast improvement over the analogs imo, they are still just that, aids.
Dennis from myspace :)
When I got my first pair of hearing aids, I remember my audiologist being excited about the possibility of the eventuality of a digital hearing aid. He had read about one in a professional magazine that was about the size of a room. "If they could only make it smaller. . .," he said. A few years later, the microchip was invented and I thought, "Here we GO!" We live in a great time, I agree. Still, life is not easy for the deaf even now and there are so many people not being reached, so many who need digital aids who can't afford them who are falling between the cracks.
Oh, I think you are very brave. All of us have to accomodate for some lack of perfection in our bodies (or hearts), but this must be a particularly difficult one. I have a couple of connections, even though they are removed from your story: 1. I suffered horribly from ear infections as a child, and I remember them being more painful than childbirth. They didn't go away until I had my tonsils out, and the pain, infection, ringing was just awful. 2. Psychologists are idiots. Most of the time they can be counted on for absolutely nothing. I have a degree in psychology, and lost of experience with therapists, and so I know how frustrating it must have been to talk to someone who thinks getting a job is a cure. Dolt! I applaud your blog and writing.
Thank you Belleza. We're ALL brave. Ear infections DO hurt. I haven't had many of those, but I remember when my kids had them. Oddly enough, my daughter is majoring in psychology now. I think the right psychologist (therapy treatment) can be a great help sometimes. Unfortunately when a person is severely depressed, he or she may not be in a position to rationally evaluate whether the treatment is working out. What helped me most was meeting up with others who had been through the same experiences as me.
Measles, interesting. This is part of what my mom's doctor told her caused her hearing loss.
Mine, we believe is auto-toxic due to medications.
As I read of your dealings with feeling left out and difficulties communicating, I see the same pattern with myself. It is truly tiring to go thru the day, just trying to understand!
Thanks for sharing this! This is truly beautiful! I look forward to reading more.
Kelly from MySpace
Often they simply do not know Kelly. It's a stab in the dark to figure it out. For awhile they suggested ototoxic meds given during the measles when I was a kid, because they used to give kids some really powerful antibiotics that occasionally caused damage to the cochlea. When it's a progressive hearing loss that doesn't get diagnosed right away no one knows for sure. What they DO know ( or think they know) is it doesn't seem to be genetic in my case because I've had genetic testing done on the Connexin 26 marker, and no one in my family has a hearing loss. Not that this is solid proof either, because next year they might find a new marker, or I could be the first in my family with a genetic type loss. Fact is, the reason why someone loses their hearing is often just a guess.
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