By Michele Linder
SayWhatClub is such a wonderful place, and many of the articles I write for the SayWhatClub Blog come from posts to my home list, Connect. We get into some good discussions and share valuable info with each other.
A fellow Connector asked, “What kinds of things should you have learned sooner?“
For me, this question takes me back to childhood. I grew up poor in a family headed by a struggling (in more ways than one) single mother, abandoned by a father I never met, and striving to please and emulate a deaf grandmother who was the most capable and loving person I’ve ever known—and having some traumatic experiences (not related to hearing loss) to work through.
I most likely began losing my hearing long before I flunked the hearing test during the public school screening in grade school. The result was a visit to the county clinic. All I remember of the appointment is that the doctor told my mother I was very proficient at lipreading—it was likely I had had a hearing loss for quite a while—there wasn’t much to be done for “nerve damage” (this was the 1960s), and that as an adult I’d likely be deaf and would need to learn sign language.
That day was the last time my hearing loss was talked about in any meaningful way, and it was the one and only time, during childhood, I saw a doctor for it. I continued to flunk the hearing screenings at school, but I got smart… if I knew about test day ahead of time, I’d conveniently fake a stomach ache and stay home. What kid wants to take a test they can never pass?
On my own, I learned how to live in a world I couldn’t fully hear. I relied on lipreading and other visual skills–anticipatory and observatory.
Ten THINGS about hearing loss I WISH I HAD LEARNED SOONER
1. I wish I had had a good advocate to model after.
Advocating for myself wasn’t something I was aware I could or should do.
I purposely didn’t include mentor here, as I had a fabulous mentor in Grandma. She was also a lipreader and did not know or use sign language to communicate. She finger spelled on occasion, though, and she taught my sister and me. The fact that she was so capable is part of what allowed me to consider that hearing loss wasn’t going to be a deal-breaker in life.
I was a good faker, and I went through my entire public school education without many people knowing that I had a severe hearing loss. My super power (that I wasn’t even aware of) was my brain would swoop in and take over for my ailing auditory nerve, so only a few close friends knew. I wasn’t actively trying to hide the fact that I had trouble hearing, as much as I simply didn’t give it much attention. There were much harder issues in life to deal with, so the top spots on my list of things to overcome were already taken.
2. I wish I had realized sooner that faking and bluffing my way through life wasn’t a positive to anyone, especially me.
3. I wish it had occurred to me sooner to apply the same skill I used to overcome other challenges to my hearing loss.
After working through many other challlenges, it never occurred to me until much later in life that I could apply the same to my hearing loss challenges. I used some really good therapeutic approaches (unbeknownst to me at the time) to change what I didn’t like. Among them, “exposure therapy”.
When it did finally occur to me, it was life-changing. In a situation where I hadn’t handled myself well, I’d think about what I might have done differently for a better outcome. Once I came up with some things to try, I’d take myself out on field trips to experiment.
Note: I only went on field trips on days when I was feeling adventurous and in a good frame of mind.
Example: The confusion over what to call yourself–deaf, hearing impaired, hard of hearing, half-deaf, partially deaf? In my experience, “Hearing Impaired” always made people confused… they didn’t really know what it meant. “Hard of Hearing” caused people to yell at me… they thought shouting was necessary. “Deaf with a lowercase ‘d’” never felt like my word to use, but I tried it and got results. Labels aren’t always necessary, but “deaf “is the most effective, so I’ve become comfortable using it.
However, what I discovered to be most effective is to simply tell people what I need from them.
Example: When checking out at the grocery store, I say “Hi, how are you doing? I need you to know that I read lips, so when I’m looking down to unload my cart, or digging in my bag for my credit card, I’m not going to hear you.”
Telling it like it is goes a long way to normalize interaction and communication. People see you as capable and the fact you can’t hear becomes a non-issue. Gone are the awkward situations at the grocery check-out.
4. I wish I had learned sooner that it’s okay to question the expertise of audiologists and doctors.
This one is not meant to bash all audiologists and doctors, it’s more of a commentary on my own naiveté, as I put too much trust in clinicians I considered experts. I assumed they had my best interest in mind, without fail, and if there was something else out there to help me, when hearing aid trials proved less than beneficial, they would be aware of it and inform me about it.
Many of the audiologists I saw during the thirty years I tried hearing aids were nice enough, but none of them were what I would call exceptional, yet it didn’t occur to me that I could change audiologists if I wasn’t satisfied… I thought I had to see whomever I was referred to… it seemed traitorous to go elsewhere.
If you’re not getting satisfactory results, then it’s perfectly acceptable to look for someone who is a better fit for you. Joining SWC is what opened my eyes. I learned that some audiologists had incentives to push certain brands and models with most bells and whistles, whether you needed them or not, as they made more money on what was more expensive. To counter, I heard from others who sang the praises of their exceptional audiologists. It made we wonder what difference it might have made had I found someone exceptional?
5. I wish I had become aware sooner that it’s not my fault that I can’t hear with hearing aids.
My lack of success isn’t a failing on my part, but sometimes it seemed as if my audiologist was implying that I was the problem. I tried hearing aids from age 21 to age 50 (the year I qualified for cochlear implants) and they simply didn’t give me the benefit I needed. I learned very late that this was probably due to hyperacusis—an intolerance of every day sounds. However, I didn’t learn about hyperacusis from an audiologist, I learned about it from SWC, and then later I was diagnosed at Mayo Clinic with severe hyperacusis.
6. I wish I had found a support group sooner.
I was 48 years-old when I found SWC by stumbling onto a SayWhatClub newsletter article someone had reposted on their blog.
At the end of each and every hearing aid trial, I asked my audiologist (sometimes through tears) what else could I do since hearing aids weren’t working for me. The most I ever got was a Harris Communication catalog shoved at me with no recommendations. The audiologists and ENTs I saw were not knowledgeable about what to do when hearing aids don’t work. There is a huge gap between the medical community and those in the know about hearing loss.
SayWhatClub, and other groups focused on hearing loss, is part of what fills that gap. There’s nothing like getting support from others who don’t have to imagine what your life is like, they know, because they live it too. You can find some really valuable information from groups like ours.
7. I wish I had been more confident in my hearing loss sooner.
As a young adult, I let embarrassment and awkward situations deplete me. I had my first child at age 23. Had I not been a young mother or an adventurous soul, I might have suffered more isolation and depression. When you have a family, four young kids (I had my last child at age 29) depending on you, and you’re moving around a lot with a husband in the military, you don’t let a little thing like hearing loss get in the way. You find ways to live with it. I continued to ignore my hearing loss and didn’t put it “out there” like I should have. Looking back, I think I was happy to have such a wonderful diversion.
8. I wish that I would have recognized sooner how I’ve benefited from my hearing loss.
SWC shined a light on how really good at coping I was, even as a kid left on their own. I possess a lot of good skill because of hearing differently. Sometimes you have to see things in others before you can recognize them in yourself.
9. I wish that I had learned sooner that apologizing for not being able to hear isn’t necessary.
Many people with hearing loss are diffident and apologetic, and I was one of them. I felt as if I was inconveniencing others when I failed to understand. This would send me into panic if a repeat was no help. This was a really hard thing to overcome. It’s the same for a lot of people with an invisible disability.
10. I wish I had learned sooner that telling people upfront that I can’t hear is the key to everything.
When you do, you’re taking charge and heading off the great unknown. I used to wait for trouble and then disclose, but that’s backwards. Disclose, in the way that is most effective and comfortable for you—it won’t be the same for everyone. Once people know you can’t hear and what you need from them, it sets a tone for successful communication. It’s the magic formula for having good days vs. bad days. It’s what allows you to be who you are in spite of being different.
I’m pretty confident and capable these days, and I credit SWC and volunteering for much of that. That’s not to say I’m always confident and never have a bad day. I still have days where it’s just better if I stay home, and likely always will. However, I don’t think I would be as far along if I hadn’t volunteered with SWC, and captioning advocate. I started out volunteering because I wanted to pay forward what others did for me when I was down. Soon realized I was helping myself far more.