In Between

“If you’re going to be weird, be confident about it.” 

Living with hearing loss is highly isolating and frustrating. It feels like a constant adjustment process where one fails every day. Ordering a coffee becomes difficult. Interacting with people, especially strangers, is a scary task, usually performed with self doubt and anxiety. It means being constantly anxious, feeling failure at every misunderstood word, every judgmental look or raised voice when asking someone to repeat themselves. It means saying “yes” or “aha” despite not understanding the question, just because you’re too embarrassed to ask for the third time “excuse me?”. It means landing in a place in between, between the hearing and the non hearing world.

Hearing is such an important sense, that it shapes our perception of the world and most importantly, the communication with other humans. Helen Keller once said: Blindness separates us from things but deafness separates us from people. She was painfully right. Losing the ability to hear is literally putting a wall between us and other humans, making us lose the social easiness we have been used to. Together with it, we sometimes lose our self confidence as well.

I developed a habit of looking for answers to almost everything online. When feeling at the edge of collapse I would go and find solace in the posts on Reddit of other people. Learning about their struggle made me feel seen and understood. Thus I discovered that I’m not the only one struggling in this place “in between”, where loneliness comes from being misunderstood by my hearing peers, by being unable to relate to them.

I didn’t understand how important it is for us humans to relate to others until I heard a friend of mine telling me that she cannot relate to other people anymore after losing one of her parents at such a young age. It made me realize that I have been struggling with this feeling for a long time, unable to name it accordingly. 

Since deafness and hearing deficiencies are quite invisible or easily masked disabilities, people around automatically think that I am “normal”, meaning hearing. Also, the better one is at acting “normal”, the more disregarding people are of one's disability - as I learned from my own experience.

My first reflex when faced with my loss was to pretend it wasn’t there. I was doing this subconsciously, without giving it much of a thought, as an automatic way for self preservation. After some years of ignoring my loss by avoiding to aknowledge and accept it, I felt how a feeling of emptiness was taking hold of me. It was the feeling that I didn’t belong in this world, that I couldn’t relate to it. I was stuck in between two worlds, the world of the hearing and the world of the deaf.

Despite wearing hearing aids, my hearing wasn’t good enough to be fully part of the hearing world. And because I was somewhat hearing, I didn’t consider myself part of the world of the deaf either. The biggest problem with this was that I didn’t know how to exist in this world, so I taught myself to lipread, pay attention to intonation and body language, but also live with frustration, anger and feelings of unworthiness.

People that are born deaf are taught how to experience life without hearing, they are given tools, a language to be able to interact with others. Although being deaf limits the amount of people one has access to, which is in itself a disadvantage, the feeling of belonging to a community is there. Hence, their social needs are fulfilled, the ability to communicate and relate to their world exists.

For people like me, who were born hearing and lost their hearing at one point or another, our only way to interact with the world is to interact with it as a hearing person. Hearing aids and cochlear implants are seen as a way of fixing the problem, and in some cases, they do. However, rarely do they make the problem go away. Mostly, they ameliorate the effects of loss. People around us communicate as if we are hearing and there seems to be no way to change this. It’s either they talk to you as if you are slow or have a comprehension problem or they ignore your “special needs” altogether.

The truth is, I don’t really have a solution that helps communication between the hearing and the hard of hearing. In most cases, the communication is either a tiring situation for the hearing person or/and an embarrassing one for the hard of hearing one. I believe the key is adaptability, patience and understanding. However, these things can be hard in the heat of the conversation and also the hard of hearing person can feel put on the spot if the whole communication is centered around their special needs. Predominantly, I deal with it by swallowing my frustration, letting a lot of things pass and only asking people to repeat themselves when I really wanted to know what they’re talking about. Being with people that are aware of my hearing loss and willing to accommodate it without putting me in the spotlight helps a lot as well. 

The thing that turned out to be a game changer for me was finding a community of people that shared my struggles. It’s like finally finding the people that speak the same language as me - the language of hearing aids, listening fatigue, audiologists, cochlear implants etc. Suddenly, I didn’t have to explain every single term and feeling. The people just understood, as they were going through the same. I could relate again to others.

My first attempt at finding “people like me” was going to an association for the deaf in the city I live. I tried reaching out by going there and explaining my situation. They gave me an e-mail address and told me that there is a group meeting to play volleyball. I wrote to the e-mail address and never got a response and felt discouraged instantly. I still don’t know what exactly happened. I sometimes wonder if I was rejected because I was hard of hearing and not deaf, unable to sign, thus declared as not belonging to the group. I like to believe that it was just a mistake and the deaf community is not so exclusive. However, I stopped trying. 

Eventually, by pure chance, I have mentioned to my acoustician that I don’t know other people "like me". She then gave me an e-mail address and told me to get in touch with a group of hard of hearing people. This time they replied and some weeks later I went to my first meeting. Despite feeling that being hard of hearing was the only thing we had in common, the meeting turned out to be extremely enriching. It was almost fascinating to talk about personal stories of how each one has lost their hearing and how they have been dealing with it. Suddenly, I didn't feel bad for asking people to repeat themselves and I had someone to ask for advice concerning hearing aids, acousticians and cochlear implants. I could relate to people again and they could relate to me as well through our shared experiences in this strange space “in between”. Since then, I have found other groups and am pleasantly surprised by how united and willing to help these communities are. 

This doesn’t mean that I stopped hanging out with my hearing friends, quite the opposite. I just now have a community to go to when I need advice or the feeling that I am not alone in my struggles. This has made my reality feel less lonely and the journey across this “in between” space more optimistic.