Meniere’s Disease and Me: Be kind when I ask you to repeat yourself

I’ve had issues with hearing for years. Because of horrible ear infections when I was a kid, I have a build-up of scar tissue around the bones in my right ear which makes it difficult for me to hear. If I cover my good ear to listen with my bad one people sound like they are talking in tin cans, and I can only make out that they are saying something, not what they are saying.  You can’t whisper in my right ear and expect me to respond.  Except for feeling someone breathing on my neck, I won’t hear anything.Meneire's Disease, hearing loss, deaf, deafness

In the last few months I’ve learned that I have something called Meniere’s Disease, which only adds to my hearing issues.  (Find out more about the particulars of Meniere’s Disease here.) Now, instead of one bad ear, I have two– the hearing in my left ear is in decline, also. Basically, something is wrong with the fluid in my ears and I am slowly going deaf. Not something you want to hear when you’re 41.

While my husband and children have learned over the years that a person with hearing issues requires a little more thought when speaking to them (like not turning away mid speech, not trying to speak without moving your lips, not speaking to me when my back is turned, not expecting me to hear them and the person I’m talking on the phone with…), the thought that I may be completely deaf some day is unsettling for them.  I am terrified.

I keep thinking about all that I will miss out on when my hearing finally goes kaput.  I’ll not be able to hear my husband and children say they love me anymore.  Will I be able to hear my grandchildren’s voices? Will I have to wear hearing aids and still be hard of hearing? Will I talk funny? Will I need to learn sign language?  Even though I’m a writer, I don’t relish the idea of writing down every word I want to say.  Will I feel isolated, even more so than I do now?  Will people give up communicating with me because it’s just too damn hard? I already have a hard time deciphering what characters in shows are saying sometimes, but will the day come that I need closed captioning to understand anything I watch?

I see people who live with others with hearing loss issues. They get angry when whoever they are speaking to doesn’t hear them or asks them to repeat themselves a few times. I hear their families chastise them about getting hearing aids and how their hearing loss is frustrating their family members. It breaks my heart, and it seems incredibly insensitive, but I can see why it would be difficult to live with someone who can’t hear.

I think of all the things I love to hear:  birds singing, my children laughing, spoken word poetry by Shane Koyczan, and my favorite authors speak. And I wonder how they will change for me when my world goes silent.

So, I stand on a precipice of sorts when it comes to my hearing. For now, I will be thankful for what hearing I have. I’ll try to focus on the fact that I’m not deaf yet.  I have no idea when my hearing is going to be gone.  There’s always a chance that I will just be hard of hearing and not completely deaf.  Declining hearing sucks no matter how you dice it.  I’m still missing out on sounds that others hear, little clues in daily life that completely pass me by.

One thing is for sure: the list of what I can’t hear is only growing. And it’s breaking my heart.

Do you have an experience to share about Meneire’s Disease?  Have you or a loved one been faced with a sudden disability? Share your experiences in the comments below.

If you’d like to read more of my writing, please check out Lemonade and Holy Stuff, available at Amazon and Barnes and Noble.


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