By Michele Linder
On the SayWhatClub email lists we often talk about our experiences and challenges, and we vent when our hearing ability changes, whether those changes come through progressive loss or through a change in device. Often we are looking for the lesson in the difficulties we face.
And, yes, there is a lesson. It’s a hard one to learn over and over again, though surely worth it if we can stick it out.
Take it from someone who has never found benefit with hearing aids… you just have to learn to live with less and less and still be you. That’s true for anyone with a progressive hearing loss, whether they are aided or not, just as it’s true for anyone who faces a different life than how they started out.
What have I learned in almost 50 years of losing my hearing? You have to give yourself time to adjust to the new way of not hearing when you have a noticeable dip. Hearing dips are like someone throwing a wrench in the workings of your life and communication abilities, and for a time you feel wrecked.
It’s a panicky feeling, like you can’t get a handle on things, and you’re always one step short of understanding. But, after a while, you will start to settle in and begin to get your bearings again. It’s emotionally draining and there are days when you think you can’t cope, but you always do.
I’m to the point where I can’t hear voices much at all, even one-on-one in a quiet environment, but much of the time I’m still successful at lip/speech reading. I’m always amazed that I can still learn to cope at this level, but in the situations where multiple people are having a conversation I find I’m less and less able to participate. Therefore, I find myself opting out of those situations where I know I won’t be able to follow the conversation. Not necessarily a bad thing, really, as I’m only opting out of futile situations, not out of life.
There are times when I can be content with being an observer, but more often than not, when others aren’t addressing me specifically or talking one at a time (and by the way, that doesn’t happen very often), I reach the point of feeling like I don’t want to be there and I excuse myself. It may seem rude, but those close to me know when I’ve had enough and have to walk away.
Thankfully, life isn’t all about talking and hearing and I can have some meaningful experiences even when I cannot hear what others are saying. It’s like Rachel Kolb says in her “Navigating deafness in a hearing world: Rachel Kolb at TEDxStanford” speech about one of her biggest challenges — group conversation:
“And during those moments (when there’s too much going on to get any of it) it was very easy to think “I can’t.” … but over time I’ve learned one very important thing: I have a choice. I may not be able to choose what is easy for me or what is difficult. But I can choose how to use the abilities that I do have.”
Rachel goes on to talk about those situations where she can follow conversation (meeting with friends who know sign language, voice conversations one-on-one, even two-on-one, etc.), and that by embracing the choices that work for her she can still experience things that are richly rewarding.
When we lose more hearing, we naturally focus on what we can no longer do — the ‘can’ts’. But if we are patient and open, we can learn some of our most valuable lessons about how really resilient we are, and the ‘cans’ will come into focus again.
It’s comforting to me to know that no matter if I lose all ability to hear (some days that is my reality) there is still much that I can do. Part of the reason I resist cochlear implants (CI) — I have many reasons why I’m unsure of whether CI is the right choice for me, and that in no way is meant to be seen as a discouragement for others — is because I’m reluctant to mess with the cycle of progressive hearing loss. It has not been easy (I’m struggling right now), but it’s what I know. And I’ve learned so much that is good over the many years I’ve been forced to adjust to less and less hearing.
For me, hearing loss is not the end of the world. There is still so much that I can do.