A Visual Representation of Hearing Loss #MemoirMoment

Much like my last blog post (Dear TBI Brain: A Candid Letter From a TBI Survivor to Their Injured Brain), this blog post is a closer look at some symptoms that are now very prominent in my life post-TBI. For me my hearing has been greatly affected by the TBI (this isn’t the case for every TBI survivor).

Since this injury is very personal to me, I have found ways that work for me to describe my injury and the resulting altered hearing. As someone who has experienced a significant change to my hearing as an adult, I have found that a large percentage of my time is explaining what that hearing loss is like and what I actually hear and don’t hear (I am grateful people ask me what it’s like). My hearing loss is really more brain-injury related (if you’re new to my blog, I suffered a severe Traumatic Brain Injury [TBI] in 2016, which you can read more about here). Recently I decided I wanted to try to visually explain how I hear sound and what it sounds like in different situations.*

*Please note that everything I describe and depict here is personal to my experience. Even though this phrase was thrown around too much in the early days of my post-TBI care, it is really pretty true that every brain injury is different (as is every hearing loss).

The following blog post is my attempt to take you inside my brain (I know… YIKES… scary) and visually illustrate what I hear, don’t hear, and how it has changed and changes in different situations.

First of all, welcome to my brain, make yourself at home. I apologize if some areas are dusty from lack of use. (It’s really the math section and the athletic/sports sections of my brain that have the most cobwebs and dust…)

Right?! (Young Chevy Chase agrees with my anti-math 🧠).

This image is a general look at sounds in my brain post TBI. For three months after I awoke from a 3-week coma following the accident I was completely deaf (I indicated that in the center of the image) and after that I started to hear sound again but it was greatly affected and this pretty much remains what my hearing is like to this day (and most likely forever more). These are the major areas that are deeply affected by my TBI (although all sound is affected but these are the areas of note). Music sounds like metal on metal noise. Voices are heavily distorted (even my own and even a dog’s bark) and sound warped and like a bad guy in a movie disguising their voice using a voice distorter. Layered sounds are not handled by my brain now and just sound garbled and distorted. White noise is the go-to noise my brain uses to fill in the blanks/silence.

A Visual Explanation of Hearing Loss Over Time (post TBI)

As I dabble more in art (I keep a daily watercolor journal that I call the “Daily Doodle” and I make watercolor and pen cards for family and friends), I can’t help but apply art to many of my thoughts. In this case I have decided to use colors to represent sounds as I heard them and hear them now in the months and years after the accident. (I decided to graphic design these images so they were easier to read than if I painted them and scanned them in.) I have written about how my hearing has evolved since the TBI in blogs like this one and this one yet I wanted to share a more visual guide to my hearing loss.

3 weeks to 3 months after the accident (late 2016): As I’ve said, I was completely deaf for three months following the accident (I was in a coma for three weeks following the accident). Art Interpretation: This art shows no color yet since color represents sound in these graphics and I was completely deaf at this time.

3 months to 6 months post accident (late 2016 to early 2017): My hearing is gradually coming back but it’s severely altered, diminished and distorted. When I first started “hearing” again I heard seven sounds repeated on a loop that I called my “sound loop.” This stopped after 3 months. I remember when I first started hearing the sound loop that I had my Mom call my doctor because I couldn’t imagine surviving long hearing that. Little did I know the sound loop would last 3 months and the white noises and distortions are likely going to last my lifetime. The white noise was also very prominent at all times at this time. Art Interpretation: I depicted the sound loop by showing 7 colors repeating. I depict the white noise by using the white and black static TV reception image.

June 2017 – June 2019: This was the time period after the sound loop stopped. The white noise is still very prominent, and music can’t be deciphered as anything other than metal on metal noise. However, I am starting to be able to understand voices better. Art Interpretation: No sound loop yet the white noise is still dominant (still portrayed as black and white static). Since I am hearing more voices and sounds I have started a key for which color represents which sound. To portray metal on metal noise of music I use distorted silver.

June 2019 – June 2020: It’s during this time that I am working with an outpatient speech-language pathologist. She is working with me to help my brain recognize the sounds its hearing and be able to process them again. It is grueling work for me. We spend a lot of time with her playing a radio and then saying words that I have to repeat back. She covers her lips so I can’t speech read. Since my brain can’t process music as more than metal on metal noise, this is truly hard for me. This speech-language pathologist does this technique a lot with people who have just received cochlear implants. Since those who get cochlear implants (as I’ve been told) have to train their brains to the sounds they are hearing. I think this technique definitely helped me but I certainly wasn’t happy experiencing it! Art Interpretation: All of the sounds that existed before still exist (white noise, metal on metal/music, and the key of sounds I introduced earlier). The difference in this art is that since I am doing that brain training sound therapy with my speech therapist the distorted silver color to depict music is more prominent (since she has me listening to music to train my brain).

June 2020 – Present: Now that the big changes have stopped happening most changes to my hearing are pretty subtle. Art Interpretation: This looks pretty similar to the previous one but music/metal-on-metal/silver is less prominent because I have stopped speech therapy and try to avoid loud layered sounds and music environments.

An analogy I have come up with to explain why I start to hear voices better that I hear frequently (mind you, they are still very distorted) is that my brain allows repeated sounds to make a rut like a well worn path. A repeated sound creates a well worn path in my damaged brain so that the next time it hears that voice my brain doesn’t have to work as hard to hear it. It explains why I hear my Mom’s voice better than most (although pitch does come into play too since I hear higher pitches better than low).

Sound and my hearing will always be a prominent part of my brain injury story. As I work on my memoir I am just realizing that there are many ways to explain my hearing loss and distortions and for this blog explaining it visually worked well.