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!