By Luca M. Damiani

In January 2018, working as a digital producer, I was running a test setup in the auditorium of a London art gallery. Due to faulty audio equipment, a large set of wall speakers blew right behind where I was standing, exposing me to an incredibly high-level sound blast.

The blast was so powerful that it knocked me to my knees. I subsequently suffered vertigo and felt faint and dizzy. 

Over the following weeks this dizziness and fogginess continued daily, accompanied by a continuous, high-pitched whistling in both ears that varied in intensity and pulsation. In an attempt to reach a diagnosis for my symptoms, I underwent many visits, tests, and referrals to various doctors, clinicians, and hospital departments in the United Kingdom.

Everyday life became harder and harder—being anywhere outside of the quiet of my own home (where I could play calming background music) started to feel painful to my ears and brain. Days were stressful and full of either overwhelming sensations of cloudiness and discomfort, or intense anxiety. I was also very, very tired, but unable to sleep.

Around five months after the accident, my hearing—which had suffered a significant loss from the blast—returned. I am told this is unusually long (months vs. days) for hearing to resume after a noise event. But my hearing came back with an increased sensitivity to sound, causing discomfort and making my brain feel muddled.

I developed a low tolerance not only for high-pitched and high-volume noises, but also for places with multiple ambient sounds. This finally brought a diagnosis of tinnitus that is bilateral, in both ears, as well as bilateral hyperacusis, or an intolerance to typical ranges and volumes of sound. 

Ten months after the accident I also received another diagnosis: persistent postural-perceptual dizziness (PPPD), distinct from the hyperacusis-caused dizziness in that it is constant and subject to visual stimuli and body/head positioning.

Researching My Conditions

Tinnitus is a hearing disorder that consists of the perception of a constant or intermittent noise in one or both ears usually in the form of ringing, whistling, humming, or pulsing, with no external sound source. The sound can appear at varying levels of intensity, pitch, and duration. Compared with hyperacusis, it is a relatively common auditory disorder that affects millions of people at some point in their lives.

One theory about the cause of tinnitus is that it appears that the brain, in adjusting to missing frequencies, ends up creating an electrical signal to replace the missing auditory information, and this manifests as a phantom sound. While there are therapies, plus a variety of organized support networks to help those with tinnitus, there is no known cure for the condition, and it can last indefinitely.

Hyperacusis is an auditory condition characterized by a high sensitivity or decreased tolerance to everyday sounds. It develops when the central auditory processing in the brain perceives noise in an amplified way. It can lead to pain and at times extreme discomfort, which in turn can cause heavy fatigue, depression, and/or anxiety.

It is less common than tinnitus, but hyperacusis and tinnitus have been found to occasionally coexist. While research is ongoing, as with tinnitus a definitive cause of hyperacusis is not known, and it can also persist indefinitely.

In investigating my conditions, I learned that the auditory system is tied to the vestibular system. Eventually my balance also became affected, which led to the PPPD diagnosis. PPPD is a chronic disorder that is affected by sensory perceptions from both hearing and vision, as well as the position of the head.

In a nutshell, my hearing, balance, and vision—all sensory inputs—have become, as the result of a single event, much more sensitive. In addition, this array of conditions has affected my high-functioning Asperger’s. The reaction to enhanced sensory sensitivity has impacted my normal daily activities and my level of brain overload to external stimuli.

Following my diagnoses, I began, in earnest and as much as my newfound levels of fatigue would allow, to investigate other people’s experiences, support organizations, and networks, as well as the various treatments, technologies, and therapies available. These include hearing aids—whose masking effect is a lifesaver for my tinnitus—and various sound-filtering and noise-canceling headphones, sound therapies, mindfulness techniques, cognitive behavioral therapy, psychotherapy, vestibular rehabilitation, and so on.

Daily Life

Hyperacusis has impacted my quality of life in every way. It is very difficult to tolerate everyday sounds—those that seem completely normal and are often unnoticeable to others. My work, home, relationship, financial, and social lives have all been affected, especially because hyperacusis has made it very difficult to function in situations outside of my own home.

Living in the urban environment of London became intolerable, so I moved to the countryside near the sea. My artistic practice (which included travel to workshops, events, festivals, and installations) and my university teaching job became very difficult to maintain. The PPPD means I am sensitive to visual movements (going up or down, in real life or on screen), lights, patterns, layers and/or depths of sight, turning my head, etc.

As I worked to readjust and reframe my life, it felt appropriate and healthy—not to mention advantageous—to stay active in my profession as much as my health allows, to use my artistic practice to look at and process my new circumstances, critically reflecting on them and using them to prompt an artistic response. This process has helped me learn more about these conditions and their patterns, and then begin to learn how to cope with them better. 

Creativity leads to my calmness. Looking at my auditory and balance conditions through an art and design lens, I am able to express in a visual, visible way this new, invisible—but all-consuming—experience of being. After all, art has the power to show or reveal the unseen or mysterious—and to create something new that we can connect with and better understand.

Finding Patterns

Part of my therapy is to keep track of and make records of my condition every day. I have to recognize and record triggers and reactions. I use sketches and notes, and I noticed that this log of activities reveals recurring patterns. Through this daily log I began to form shapes out of the patterns to use in my art. 

I derive patterns by categorizing the reflections and reactions to different stimuli using codes and symbols, which I then turn into geometrical forms. Revealing patterns of moments and time, these forms are visual interpretations of my responses and feelings of processing each sound, and show aspects of the physical and emotional reactions connected to them.

Using the sketches and notes that capture what I hear and feel, I create poems to accompany the moving images. The art, technology, data, and emotions become interrelated, overlapping in ways that also reflect what living with these multiple disorders feels like. These works also show a sense of continuity that evokes the ongoing nature of these hearing and balance conditions.

As living with these conditions evolves, so has my attitude toward them as well as my art. Starting from a point of suffering, I have been working toward a new way forward, while continuing to process my physical and emotional reactions toward these multilayered conditions that have changed my life so dramatically. 

There is hope. I am swimming every day, in a pool as well as in the ocean, and this helps me cope both physically and mentally. I used to swim competitively when I was younger, and have continued swimming all my life, so this is something that hasn’t changed. Nowadays I swim for at least an hour daily, with my long swims reaching about 4 kilometers (2.5 miles).

As a meditative exercise, swimming relaxes my brain, and this helps massively with both my tinnitus and hyperacusis. The sound of the water covers the tinnitus completely, like the masking hearing aids I wear. I also do a type of underwater swimming called dynamic apnea that results in virtually no sounds whatsoever, making it very effective for managing my hyperacusis. Another bonus is that I don’t feel off-balance while floating.

I sometimes record the water during my long swims in the sea and/or underwater training at the pool to use in my art. Swimming has already made an impression in my art, such as in the video-poem “Reload.”

Perhaps this artwork in some small way may be useful as a means by which audiologists, psychologists, artists, and other people who are experiencing the different stages and degrees of auditory conditions can better understand and express what is being felt. 

I hope that this artwork can contribute to this complex, often-hidden, debilitating, painful, and yet scientifically fascinating area, and illustrate how conditions that can be incapacitating can simultaneously be lived with through an exploratory lens. 

This article was originally published in the Winter 2020 issue of Hearing Health magazine and is adapted from an article published in Art Journal Open. Luca M. Damiani is a media artist and a lecturer in graphic and media design at London College of Communication. For more about Luca, see hhf.org/luca-damiani or lucadamiani-art.com.