Hearing loss brings us a lot of sadness and it would be hypocritical not to talk about it. I shared on the Chronicles of Hearing Loss fan page the link to a 2012 post whose title is “Hearing Loss also saddens me”.
I was surprised because almost 20,000 people viewed the post because of the title, and it was an old post. That was when I started to think about what changed for me since then, and fiddling with my cell phone I found a photo that perfectly illustrates the person I was in 2012.
- this post was translated to the English by Isabella Vitória Ramalho
The down-in-the-dumps photo
On this day, I was in a restaurant in Campos do Jordão after giving a lecture at FORL, with a group of speech therapists and my mother (she was the one who took this photo).
Completely exhausted from keeping track of mouths all day so I could do lip reading, I still dared to accept a dinner invitation. In the end, I was obviously not able to keep up with several mouths in a noisy, dark restaurant and I ended up sleeping sitting at the table, while the conversation ran wild around me.
When I remember that, I feel a lot of sadness for that time because today my life is completely different in that sense. Going out to dinner is no longer a sacrifice, an activity that exhausts me and makes me go back home feeling bad for not having been able to keep up with anything. In 2021, it is a pleasure and a huge joy to go out to have dinner.
I look at this photo and think how painful it was to have to deal with this feeling of frequent frustration in moments that should have been of fun and happiness.
How do we handle it?
Where do we get our strength from? How can we move on with our lives without surrendering to all the loneliness and isolation that hearing loss brings to us?
Today everything has become easier for me because of the cochlear implant, but I know that thousands of you who are behind the computer screen still live with these feelings – that’s why I consider it so important to talk about them.
We deserve great credit for our ability to keep moving on with life despite all the negative psychological burden that comes along with hearing loss. The secret is not to give up – and always look for everything technology has to offer us.
Hearing loss in adulthood
Those living with hearing loss live in a state of constant effort: effort to keep up with conversations, effort to listen, effort to understand what was heard.
Effort not to fall apart with the jokes of others, effort not to succumb to sadness, effort to endure the whole day at work doing lip reading and then get home and continue reading the lips of the family.
Effort to find happiness halfway between sound and silence, effort to adapt to the hearing aids, effort to adapt to the cochlear implant…
All the hearing people I know think this is easy, and they only change their minds when they experience hearing loss themselves.
These days at Sonora I met a patient who was recently implanted and we kept talking. His gaze was just like mine back in 2012: alert, wide-open eyes, staring at mouths and always checking to see if there is something else going on.
I told him: “In a few months when you have already activated the CI and got used to it a little, you will relax. You will lose this need of always being alert.“
He looked at me with a countenance of ‘someone who knows how I feel’ and said: “I’m tired. Every day, I come home exhausted. I explain to my wife that it’s not that I don’t way to pay attention to what she says, I just can’t take it anymore after a long day of work.“.
Our conversation made me think of this photo above, moments before the Cochlear Implant activation on 11/11/2013. I had no expectations, and I was ready for the worst. But in my inner conversations, I ardently desired that it would free me from two things: the exhaustion and the isolation provoked by hearing loss.
I guess some psychological damage that hearing loss does to us stays for the rest of our lives. It is not easy to live with a disability that has a negative impact on our communication and interaction in all life aspects: at home, at work, with friends, on trips, in leisure time, in romantic relationships…
The greatest sadness brought by hearing loss
The greatest sadness that hearing loss brought me was that I used to feel like a prisoner within myself. A prisoner inside my mind.
A prisoner of a lonely bubble of silence that I couldn’t pop not even with a sledgehammer. I had the distinct feeling that my body and mind were like a very high tower – and no matter how much I threw down my hair from up there, it never reached the ground.
And because of all of this I believe we have to face this sadness with courage: I had good results with the Cochlear Implant, but do you think it was easy to decide to have it and that the adaptation was a piece of cake? The pain of keeping stuck in the silence was greater than the pain of trying the CI, and that’s what motivated me. And this is a good reason to motivate those who need to use hearing aids and are paralyzed with anger because of it.
To this day I still deal with tinnitus – although after two implants it lowered by 80%. Some days it really annoys me! I wish the tinnitus would disappear from my life, but it will stay with me until the end. One of the strongest memories I have from my childhood is of this tinnitus! It seems that deafness never gives a truce (after all, my tinnitus is connected to it).
Hearing loss and music
If someone asked me what is the sadness that being deaf brings me today, the only thing that comes to mind is the fact of not being able to notice all the beauty and all the shades of music.
The pleasure of listening and being able to understand the lyrics (not always, but almost always, but not 100% of it also) is already more than enough to me. However, it is annoying going to a piano performance and perceiving the notes as if they were similar and boring, for example.
Even more annoying is to know that in an environment with classical music playing, I will be the only one not to perceive it like the hearing people – in the end, I know that the topic of music is the only one that still makes me feel unequal to those who listen naturally.
Caio Fernando Abreu once said: “There is always something missing. Keep it painlessly, although, in secret, it hurts.”
Shall we talk about it?
I know very well that it is difficult for us to talk about the blues of hearing loss with those around us, especially because they are not deaf.
It’s like talking about cheating with someone who has never been cheated on or talking about dieting with someone who has never needed to lose weight. But it is necessary to talk about them, because, as said in a phrase I read once, ‘the word kills the thing’. When we verbalize about something that really bothers us, it seems that this ‘thing’ loses the magnitude and the power it has over us.
Maybe I’ll spend the rest of my days cataloguing, reviewing, and archiving feelings related to everything that deafness has ever caused to me, made me go through, and puts me through.