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communicating hearing loss and single sided deafness (SSD)

Updated: Jul 22, 2023

I have been single sided deaf (SSD) for almost a year now. As I learn to navigate this world with a partial loss of one of my senses, I am noticing that my understanding of my work as an improvisation facilitator is shifting. This blog series explores what it is like to improvise life one-eared. As I learn, I will share my stories, experimentation and recommendations for creating inter-abled spaces for mutual learning and development. In this post, I share the obstacles I encounter and a visual graphic I use when communicating my hearing loss to other people.

from stereo to mono

In August 2022, from one moment to the next, I experienced a searing pain on the left side of my face as I lost my ability to make out sound, understand speech, and rely on bone conduction of my left ear. This after two years of partial loss on the same ear (early 2020) which I had been able to compensate with a hearing aid. In August 2022, my hearing aid became instantly useless and my tinnitus got excruciatingly worse.

For over three years now, I have not had a single day of silence.

For the first few months, I experienced headaches which made it impossible for me to look at any books or screens for more than a few seconds. I still barely listen to music, I cannot follow conversations in which more than one person is speaking at one time, and I carefully calculate whether it's worth leaving the house on a windy day. When I do go beyond my front door, I carry my noise cancelling headphones and ear plugs to reduce sensory input. My work capacity is at maybe 10% of what I wish to be doing and my favourite spaces, dance-floors, events and theatres, have become sound mixing torture chambers.

Jacques Lusseyran, while writing about blindness, captured the hearing experience beautifully when he wrote: "Sometimes the resonance, the hum of voices all around me, grew so intense that I got dizzy and put my hands over my ears, as I might have done by closing my eyes to protect myself against too much light. That is why I couldn't stand racket, useless noises or music that went on and on. A sound we don't listen to is a blow to body and spirit, because sound is not something happening outside us, but a real presence passing through us and lingering unless we have heard it fully." (And There Was Light, p.18)

hearing and being heard

While I live in a country with relatively reliable access to healthcare, my quest for support and research into what is going on with my ear takes up enormous amounts of energy, time and financial resources. One of my biggest negative surprises so far has been the difficulties I have had explaining my internal experiences to professionals such as my general practitioner (GP), ears/nose/throat doctor (ENT), and physio therapist. At almost every appointment, I had to move past sentences like "your ear looks fine to me," "you need to shift your focus and attention" and "come back if this gets worse." It baffles me to think that for the ENT, having had two instances of sudden hearing loss with unbearable tinnitus is not already bad enough.

To warrant more research, my hearing has to get even worse.

Again and again, I have to find new ways to justify my presence in the clinic, press for follow-up appointments and request access to treatments I know of because I looked them up online or was told about them by another person who has experienced hearing loss. It's been a slow and frustrating process that has brought home to me just how difficult it can be to communicate and understand non-visible, non-verifiable and therefore unimaginable pain and difference in ability. Even while speaking with "experts" on this topic.

Talking to my family, friends and colleagues has felt more sympathetic to me, but initially they too found it difficult to understand how hearing with one ear is different from hearing with two. Tinnitus is more common, yet for someone who has never experienced it, its impact can still be incomprehensible.

see my hearing

The most helpful tool for me to communicate my hearing (dis)abilities, has been a simple graphic I found in a German book on single sided deafness. I have found that using a visual aid helps people understand that single sided deafness with tinnitus is much more than an inconvenience or a matter of focus. That's why I have decided to make my own set of graphics which explain the specifics of my hearing in a way that makes reference to daily situations. Note the differences in spacial awareness and intensity of sounds.

Hearing with two ears. No tinnitus. This graphic shows a smiling face with two ears. In the corners are music notes, a speech bubble, a car and a phone, symbolising different sounds. The person can locate where they are in space and focus on them separately.
Hearing with right ear. Hyperacusis. Tinnitus left side. SSD left. This graphic shows a person with one ear on the right side. They have an s-shaped mouth. On their right, the images of music notes, a speech bubble, a car and a cellphone all overlap. The images are all big to represent hyperacusis. On thir left, there is a grey swirl with some red stars representing noises of tinnitus.

Of course, this is a graphic, a map. It only gives you an idea and not full empathetic capacity to experience what I am experiencing. However, I am sure you can already think of ways of adjusting the environment and your own behaviour around me when I am experiencing hearing difficulties in social situations. What's true for me, however, may not necessarily be true for another person with a different combination of hearing impairments. That's why I have made a whole set of graphics which showcase a variety of combinations.

support and share

I encourage you to use and share these graphics in your circles and networks. Making resources like this available for free is important to make them as widely and easily accessible as possible.

Initially, I wondered whether this would be a project separate from impro studio, however, for me, my hearing is not separate from this work. I cannot leave my deafness at home when I go to work with people. It is how I experience the world and therefore also how impro studio exists in this world. In fact, my hearing loss is threatening the existence of my business. It continues to have a tremendous impact on my labour and earning capacity.

Please consider making a donation to the impro studio hearing fund for me to be able to continue improvising and support others along their journeys.

Thank you for reading and following along!


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