Living with hearing loss: Susanne JonesSusanne Jones on her cookie bite hearing loss
Susanne Jones wasn’t particularly surprised when she noticed her hearing start to fade in her late 20s. Since both of her parents have hearing loss, and since she has a “profoundly deaf” cousin, hearing problems run in the family.
Now 43, Susanne admits that even with as much exposure as she had to hearing loss and its symptoms, it still took her more than a year to have a hearing test performed. Even after she was diagnosed with moderate to severe hearing loss, it took her another whole year to purchase the hearing aids.
“Like everyone, I was in my early and mid thirties and I thought hearing aids were going to make me seem old,” Susanne said. “The practitioner I was working with said, you know what? It’s not the hearing aids that make you seem old, it’s that you say ‘what?’ all the time. People notice you NOT wearing hearing aids much more than they notice you wearing hearing aids.”
The audiologist’s words rang true, and a trip to the movie theater soon after that conversation sealed her decision.
“For the first time, I really struggled to hear the dialogue,” she said. “ I said, you know what? It’s time.”
Susanne had what is called “cookie bite” hearing loss, meaning she missed a lot of middle pitches, though now her hearing loss has morphed into the more common “sloping” version that loses high-pitched sounds.
When Susanne put in her two mini behind-the-ear (BTE) hearing aids for the first time, she noticed the sound of the audiologist’s fingers clacking on the computer keyboard. She noticed the sound of the turn signals in her car. When she closed the car door, it nearly scared her to death.
“The world feels sharp and clear when you can hear, and it kind of feels fuzzy and dull when you can’t,” she observed.
Susanne pursued other options as well, including a 2009 FDA clinical trial for a surgical implant called an ossicular stimulator. The device is implanted outside the skull and under the skin, then connected to the middle ear. Much to her dismay, the device wasn’t a success, and she had it removed soon thereafter. But she took a valuable lesson away from that experience.
“I wouldn’t do it again,” she said. “It occurred to me that if the hearing aids I have today become obsolete or if there is some technological breakthrough, all I have to do is go buy new hearing aids, versus having another surgical procedure.”
In fact, Susanne became such a proponent of hearing aids that she changed her whole career path. Four-and-a-half years ago, Susanne switched from educational administrator to hearing specialist, helped along, perhaps, by an underwhelming first visit to an audiologist who did little to help her in understanding her hearing loss.
Susanne now dedicates her days doing just that as a customer support specialist for Healthy Hearing. She recognizes the ways in which the world can adapt to being more hearing-loss friendly, including reducing unnecessary noise pollution like excessive music and television in public places, and losing the open-kitchen restaurant style that stresses the sound of clanking pots and pans. Still, she doesn’t see any reason to use hearing loss as an excuse.
“I think that a lot of people would be quick to say that hearing loss is a handicap,” Susanne said. “But what I’ve learned is that we can see anything in our life as a handicap. Every single one of us has things, whether it’s an intellectual issue or emotional issue or physical issue, that we wish were better. I’m not letting that bother me at all. I do everything I want to do and sometimes it’s a little bit of a challenge, but that’s how it is. I don’t think we should limit ourselves by saying I have this thing wrong with me. I think we should be asking, what’s right with you?”