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.
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?
I know what I was doing 16 years ago on this day. I was originally planning to go out with a friend of mine. I can’t remember if we were going to see a band or just go to a club, but she ended up canceling on me at the last minute. So I was sitting around with nothing to do when Dave called me in the early evening.
We’d been online friends for a while at that point. We were both on a hearing loss support group mailing list called the Say What Club. I joined in Sept. 1997 and Dave was already a member, so he welcomed me to the list. We were good friends, and then in early 1998 we started to kinda like each other. ;-) We chatted via IRC and talked on the phone (not our favorite thing to do, obviously, but it wasn’t bad because we both understood what it was like to use the phone when you have a hearing loss). But we hadn’t met in person yet.
My kids were young, and they spent every other weekend at their dad’s. This was their ‘Dad Weekend’ so I was alone with no plans. When Dave asked what I was up to, I told him about my canceled plans. “How about if I come over?” he asked, sort of jokingly. I laughed and then he said, more seriously, “It’s only about a two hour drive. I really could come over if you want.”
So we made plans, and then I waited to hear my doorbell ring. Neither of us had cell phones or GPS, of course, so Dave wrote out his directions from MapQuest. Then he proceeded to get very lost. He couldn’t call me, so he just kept driving around, hoping he’d find my street. (There are two streets with this name in my town; he was on the wrong one because he didn’t realize he had to specify ‘west’ in the directions.)
About one and a half hours past when I was expecting him, when I was starting to think he’d blown me off, the doorbell rang. And there he was on my front porch, wearing a black leather jacket and looking just like his pictures.
Once he came in and we hugged hello, he told me the saga of his drive from Michigan to my house in Illinois. He brought in his WebTV, which was his way of connecting to the internet in 1998, and we plugged it in so he could show me how it worked. I showed him my computer; he scoffed and said he couldn’t see why he’d ever need a computer – he could do everything he wanted with his WebTV. (I do still like to tease him about that every now and then.)
We just hit it off immediately, and all the worries I had (maybe there would be no chemistry in person, maybe he’d take one look at me and want to leave, maybe he’d have weird habits that I wouldn’t realize until he was in my house, maybe he’d be an axe murderer) flew out the window. We went to see the movie Titanic (and the ALDs in the theater didn’t work, grrrr) and went out for an 11:30 pm pizza at Giordano’s (Dave’s first taste of Chicago-style deep dish pizza).
And here we are now, 16 years later, with this date inked on our calendar every year. We always celebrate with a deep dish pizza (now it’s from Lou Malnati’s) and I’m always thankful that Dave took that chance and made that two hour drive to meet someone he previously only knew online.
Thanks, Say What Club, for introducing us!
If you’re like me and you like to read books that touch on hearing loss, then I’ve got a book to recommend to you. If you enjoy books that touch on scientific subjects in layman’s terms, then I’ve really got a book to recommend to you.
It’s called I Can Hear You Whisper: An Intimate Journey through the Science of Sound and Language, and it’s written by Lydia Denworth, a former Newsweek reporter and mom to three young boys – one of whom has a hearing loss and wears a cochlear implant.
The book was described as “an investigation into the science of hearing, child language acquisition, neuroplasticity, brain development, and Deaf culture.” I wasn’t sure if it was going to go over my head, but it sounded really interesting. I was happy to discover that it was written in a way that made all the scientific information easy to understand for someone like me, who never took more than Intro to Physical Science in 9th grade.
The author deftly weaves her personal experience into the story, describing what it was like to discover her son’s hearing loss and the process she went through as she tried to understand how it was going to impact his ability to acquire language, both spoken and written. If you have a child with a hearing loss, this would really be a valuable resource.
I learned SO MUCH by reading this book, things I never knew about cochlear implants (and I thought I knew a lot) and how they were developed. There are chapters on how we process speech, how we learn to read, the plasticity of the brain (which is so cool, and is one of the reasons I hear sounds with my cochlear implant now instead of the weird beeps and warbles I heard when it was first activated). She touches on Deaf culture, sign language, oral versus ASL – and all of these subjects, which can be so very touchy, are discussed in a calm, thoughtful way, with both sides presented fairly.
I was curious to see if the cochlear implant brand wars would be mentioned, or if she would show a bias toward the company who made her son’s implant (which is not the company that made mine). I was very happy to see that this did not come up at all. The book just presented the CI facts in a general way: How they were developed, the testing involved, what early CIs were like (my goodness!), the challenges of hearing in a noisy environment for CI users, listening to music, etc.
Some of her descriptions of her son Alex’s early testing brought back unexpected, vague memories for me of my own testing as a young child. When Alex suddenly lost all of his hearing and he told his mom, through cries and screams, “I can’t talk!” (because he can no longer hear himself talk) my heart went out to them both. That is still the most startling thing for me, not being able to hear myself talk when my CIs are off.
I thought it was awesome that they found a tutor to come in and teach some ASL to the family; when I went deaf, that was one thing I really wished we could have done. As she illustrates in the book, it’s not very easy to teach everyone ASL at once, especially young children. I admire their efforts, though, to bring sign language into Alex’s life as a complement to his CI.
I could have kept reading this book for days and days; I was sad when it ended. It gets five out of five big stars from me – look for it (e-book and hardcover versions) a month from today, April 17.
(I received this book from the publisher for the purposes of an honest review; my views are my own.)
I’ve added a category for reviews here on my blog; I like to talk about stuff, obviously, and it will also give me topics for those days when I think, “My life is so boring, I have nothing to talk about!”
I’m starting out with the complimentary Boots Botanics Ionic Clay Mask that I received (for testing purposes) in my Influenster VoxBox. This was the first thing I grabbed, because I’ve always heard good things about Boots products. (There is a curl cream that girls rave about on Naturally Curly’s CurlTalk forums, but I’ve never been able to find it in the US.)
I never think to buy face masks nowadays. I guess I kind of thought of them as something you used as a pimply teenager to try to dry out your skin … not something my slightly-sensitive 49-year-old skin really needs. The last mask I bought was probably Queen Helene’s Mint Julep mask.
Remembering how hard that was to squeeze out of the tube, I assumed the Boots mask would be the same thick, paste consistency. I gave the tube a hard squeeze and was surprised to see a thin stream of light greenish gray liquid shoot out. I’ve since learned that it’s best to shake the tube to thicken it up just a bit. It comes out in a consistency that’s very easy to spread.
I squeeze about a pea size blob onto a fingertip and quickly spread it onto my face, avoiding the area under my eyes and, obviously, my lips. (blech!) It dries really fast, so you’ll have parts of your face that look dark gray and parts that look army green where the mask has already dried … very entertaining!
Give it 10 minutes to work its magic. As I said, my skin is slightly sensitive and I didn’t notice any feeling of dryness, tingling, etc. The mask dries in a fairly flexible, non-flaky way; you can feel that it’s tightened on your skin, but you can slide your fingers over the dry mask and it doesn’t come off.
Wash it off with water (you can use a facial scrub/sponge if you like, but you don’t have to) and that’s it! My skin always feels soft and fresh after I use this mask; I try to use it once a week.
It’s affordable and works well for me – I give it an A.
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.