Hearing loss is one of those gifts that keeps on giving. Once you have it, your hearing loss presents itself to you, every day, in different ways. You never know what you’ll be treated to – an uncaptioned TV show, a sales clerk whose lips point to her computer, a conversation with friends that spins out of control into incomprehension.
Regardless of when hearing loss occurs, experiencing one of its truths for the first time can be shocking in its unexpectedness, its permanence, and its raw repercussions. We are bewildered at how such a thing could happen to us.
Becoming comfortable in the skin of hearing loss can take time, and through the years I’ve had some shocking moments. I’ve long since accepted them, but at some point all of these ‘truths’ have hit me in the face, hard. And some of them keep coming at you, as if you were a punching bag, over and over again. These may not seem startling to you, but if you are hard of hearing or deaf, you may have had your own moments: “WHY did no one tell me about this? Can living with hearing loss get any worse? Could I pick a different disability, please God?”
(A note to ‘hearing people’: many of us with communication challenges have a tendency to be somewhat dramatic. That’s life, and we need to vent once in a while.)
These were some – just some – of my shocking revelations:
Your hearing loss will never go away. You will always have it. Always, forever and ever, amen. And if you don’t like it, that’s too bad, because it’s yours to keep and you can’t re-gift it. I was small when I first learned this, but it didn’t really hit me until I was a teenager, trying to communicate with mumbling, hormonal boys. Then I realized, “This hard of hearing thing is not going to be easy.”
Hearing aids do not last forever. Just when you become used to them, attached to them, or even adoring of them, they die. At 20, I was thrilled, over the moon, to get my first hearing aid. It cost $475 and was my first adult purchase. Some people buy cars or furniture – I invested in a hearing aid, the first of many. It lived for perhaps six or seven years, which I now know is an incredibly long time, but I was expecting much longer, 10 or 20 years maybe? I felt betrayed when I had to replace it – because the new one cost a lot more than $500. It’s like your teeth; did your parents tell you that around age 50 or so, your childhood cavity fillings would start falling out and you’d have to replace them on your own dime? Once should be enough.
Hearing aids and dental work are both outrageously expensive. Just saying.
Learning to live well with hearing loss can take a long time. The aural rehabilitation process seems to be on a continual loop, like a movie played over and over. You wonder if the communication success touted by your hearing care professional is just an illusion, because just when you think you’ve nailed it, a bad hearing day knocks you flat on your butt. It’s like golf – hit a brilliant shot in one game, lose 10 balls in the next. But there’s good news: in my experience, the bad hearing days become fewer – and easier to recover from – when we learn how to kick down those communication barriers.
Every time you get a new hearing aid, it’s like the first time. And I don’t mean the sweet and wonderful stuff, like falling in love; I mean the extremely loud and annoying stuff. You can hear yourself breathing – you can hear people on the other side of the world breathing, for heaven’s sakes! I had a shock with my most recent set of hearing aids – I heard my own tummy rumbling! OMG, you mean other people have been hearing me do that, all these years? Having never heard anyone else’s tummy growling, I didn’t realize it was so loud!
And then, after a few weeks of breaking in the hearing aids (when sometimes you want to break it in pieces) you realize the sounds are no longer as loud or grating. That’s when you panic, convinced that you’ve become deafer, thanks to those damn-loud hearing aids! This happens, they say, because our brain has become used to the signals it receives but….you know….part of me is not 100% convinced.
Your loved ones forget or ignore the new rules of communication. And often. When your spouse-child-mom-dad-sister-best friend-boss-from-hell takes the introductory (and emotionally-delivered) course on “How to Communicate with a Person Who Has Hearing Loss”, he or she may still not remember to communicate in an inclusive way. And here’s the real shocker – neither will you. Let’s admit it – who among us hasn’t called their partner from another room – who then has the outrageous gall to answer you from the other side of the wall!
Hearing loss can turn you into a self-pitying whiner who looks under rocks for evidence of discrimination and bad behavior. I’ve been there and done that, at some point. The trick is being able to turn self-pity into acceptance, whining into advocacy and realizing that, while discrimination most definitely exists, what’s usually under those rocks is simply the barrier of ignorance about hearing loss, which is when we put our self-advocacy into play.
Absorbing the shocks of hearing loss takes time and supports – from our hearing care professional, family, other people with hearing loss and consumer organizations. We just have to reach out for them. Life with hearing loss will be better when we do.
Enjoy reading your article. What you said is al true. I had a hearing loss since birth. Thanks
Every day is a new challenge when you walk out the door. The group situation is the worse. Read my blog on “Multi-Directional Hearing.” [http://bit.ly/11f1aGP]
Sure, my husband of 46 years still talks with his back toward me. Funny thing, he’s gotten hearing aids recently, and I do the same thing! How can this be? I should know better, but it must be human nature or a foggy mind that causes me to forget. Nicely written article, Gael, –and the truth hurts–but there it is!
Cathy, truer words were never spoken. My Tom has been my ears for 35 years until I received a cochlear implant. A sweeter husband there never was, but I couldn’t train him to not talk to the sink. So now, sadly, as he begins the journey to hearing loss , he says to me, “You can’t talk to me from the other room.” My poor sweetie. I try to remember and sometimes forget. That said, we still find humor in the situation.
Thank you for speaking speaking for me in such an eloquent way. I cannot seem to do that, from behind the wall or not!
You’re always a pleasure to read. Your sense of humour is the best!
Gael, you are so good! Can’t wait to meet you in Portland.
Thanks, as always for your wonderful column. I take courage every time I read your words, so well expressed.
I am going to print this and post it up so I remember that we are in this together. You add humor which makes out journey easier.
I love this article. I want to give it to all my patients. It is so well stated. Thank you for your wexpertise in getting your point across.
Gael, loved your column–again! First and foremost, you are a WRITER. I smile, laugh and learn something every time I read your work.
Sharing! I’ve had a severe hearing loss most of my life, since I was 3. I lost more hearing, when I turned 40! It went from severe to profound and a hearing aid could no longer helped me. A cochlear implant was the only help for me. I got implanted with a cochlear implant. I heard birds for the first time and other sounds I couldn’t hear with a hearing aid. Now, that was very, very expensive!!! I’m still losing hearing with my cochlear implant, because my nerves are aging. Who would have thought? Thanks for sharing your hearing loss experiences, cause I don’t feel so alone and isolated. I can identify with your situation. Thank you for speaking out for the rest of us, deaf and hard of hearing.
I’m totally with you on all of this. Having started learning to lose my hearing in my teens I became angry when, in my twenties, I officially became “hard of hearing”. That is, someone from the medical profession finally recognised that I had a problem. Having spent the preceding decade being classed as ignorant, flaky or having ‘selective hearing’ by friends and family it should’ve been a relief. Now I have hearing loss, I have hearing aids (and receive a promotional magazine which is geared towards the over 60s) and have had to explain this when dating. When in bed with my partner (sans hearing aids) I hate that I can’t hear the sweet nothings that are whispered. My dad still speaks to me from another room and my mum despairs that my loss didn’t get recognised sooner. It’s been a journey and one that I wish I hadn’t had to go on.
It’s very true that some days are bad hearing days and others are good. I’m always taken aback by how much my hearing fluctuates, even though I’ve worn aids since seventh grade. The trick is to remember on the bad days that the state is temporary, not necessarily a worsening of the loss.
I realized that I have good and bad days with my hearing loss. What’s most difficult is that people don’t understand so they feel you’re ignoring them or exaggerating your situation. It can be very disheartening but I’m dealing with it.
Very well expressed. Thanks for the insights!
This article is wonderful, and I found myself nodding and laughing at parts of it. I actually shared it so some of my hearing friends, and family may understand. 🙂
gael i love reading your articles
Excellent article Gael. Funny, but oh so true!
Wow ..I’m 22yr old nd hv hearinf loss for last 8yrs.I loved this article…it like the story ot mine.
I love this article. It made me laugh out loud. Hope no one heard me. Smile. Everything is so true. My brother totally refuses to acknowledge my hearing loss. He speaks with back turned. He mumbles or he yells at me. It’s been over 15 years now.
He thinks that wearing hearings aids is a cure.
I think I will send him a copy.
I had this frustration growing up. I’m severe to profoundly deaf in both ears have been since birth with a steady decline. My mother always thought my hearing aids meant I could hear better than them and didn’t realize that ask they did was increase the volume of everything around me. Finally my last year of school I did a project on my hearing loss in which I laid down the banana diagram which show where various sounds fall and transposed my audiogram first without my aids to show where my hearing feel and which sounds were too quiet and then with my aids. The visual really helped hit home the severity of my hearing loss even with aids. I know it’s not something that can be for with every person you communicate with but I did it with my family and it really did help improve communication and deal with some of the frustration. It’s a project idea that even if you don’t share it with other people I encourage anyone I know with hearing loss to do for themselves if only for the understanding.
in the late 40’s I lost the hearing in my left ear as a child 5/6 but could hear in my right ear. I went to boarding school in Scotland and was scared to say anything I didn’t tell
tell anyone about the problem using Jokes and other things to cope. I thought perhaps it would one day just get better and even counted myself lucky that I could go to sleep quickly. When I was 20 I wanted to learn to be an interpreter I finally told my mother about it but the Dr could do nothing. I could hear well in my right ear I learned to live with it. The specialist’s advice was to tell people the facts and much as the family tries they
do raise their voices in frustration if I can’t hear them and I have to pretend I have heard
The best advice I was given was to say I was deaf (in my left ear) and that I have done ever since and everyone I meet who has a problem I encourage them to get and use their hearing aids- It helped.
I had a hard of hearing person teach me some speech reading but I am not that good at it.
A few years ago my hearing in the right ear started to deteriorate but is now staying steady.
and I hope it stays that way.
age but has remained steady for 6 or 7 years.
Just thought I would let you know of a decision I have just made. I am taking my hearing aids out for the opening the present time at Christmas. We open one at a time and when it is my turn my daughter yells at me and says Mom it is your turn, that I can Hear. The I say oh this is from… wow just what I wanted where as my daughter yells at the next person to tell them it is their turn. I cannot understand what every one is saying anyhow and get exhausted by it all. So I thought if I just took them out I could relax until my turn and then relax again. Then I could get ready for dinner where I cannot hear anyone at the other end of the table and Thank God that my grandson still talks to me. So everyone, Enjoy the holidays.
Hi Liz…I wish there was a compromise for you. Try the present opening strategy and let me know how it goes. But at dinner, could you sit in the middle of the seating arrangement, rather than the end. That helps, I find. Also, try a round table: get a large piece of plywood cut into a circle; fit it on your existing table and secure it. Get a round table cloth. That way, you’re facing everyone.
Another beautifully descriptive piece that helps me in my journey toward acceptance of my hearing loss. Thank you, Gael.