I think it started with the telephone at work. I kept misunderstanding people and asking them to repeat themselves. It was only a few months after my accident, and I just thought it was part of my general post-concussion ‘fuzziness’ that would ease off.
Then my upstairs neighbour complained that my TV was way too loud. She said she was unable to sit and read above my living room because of the noise. I was surprised and turned it down.
I couldn’t make out the lyrics at my brother’s spring choir concert. Were they all mumbling?
But the worst thing, the most embarrassing to me, was that I had started to interrupt other people in team meetings. The soft-spoken woman at the other end of the table had started to speak and I hadn’t heard her. I realized I could barely hear her at all.
I had struck the sidewalk with my skull about an inch above my left ear in my October 2010 accident. I did not have a fracture but I had a thick swelling there for several months and a constant headache. By the spring of 2011 I had developed a hissing tinnitus in my left ear on top of these other signs of hearing loss. My family doctor referred me to an Ear Nose and Throat specialist.
I had hearing tests and balance tests and a CT scan of my inner ear to see if there were any visible fractures. My ENT concluded that my hearing loss was consistent with damage from the TBI even though the CT was normal. He said that my hearing could be variable and could get worse because of damage to the microscopic hairs in my inner ear canals. That kind of damage does not show on a CT. He also said that a Head Injury Specialist might know if there was damage to the various parts of my brain related to hearing, and to language processing.
I had my hearing tested every three months for at least three years. I was growing more deaf with each test, and having greater difficulty hearing the difference between certain consonants: F and S, T and P, B and D for example. I stopped listening to the radio; I listened to shows only occasionally. Any music with high notes or high pitches was uncomfortable to listen to. I could not follow the loud and overlapping discussion at my book club. When I visited my family at Christmas I tried to sit with my good ear closest to the softest speaker.
My head and neck had been twisting sideways as well as forward when I sustained my TBI. The Head Injury Clinic pointed to the areas in my brain which could have been damaged by this particular spinning. The specialist said that my brain will try to heal, but that my prognosis was guarded because of all my prior concussions.
I cried. I cried after every hearing test. I cried when I saw the areas in the brain that were likely injured because my comprehension problems continued. I cried when I played music that I used to love that I couldn’t hear anymore, or that I could no longer hear with any pleasure.
Hearing loss is an invisible disability, and if you ask people to repeat themselves they often think that you are stupid! I found it impossible to work in a modern ‘open office’ environment because of my deafness and accompanying hyper-accusis (sensitivity to certain noises). I could not tell which direction a siren was coming from which added to my driving anxieties. I could not hear someone walking up behind me on my left hand side; I bumped into many people but I also did not feel safe.
Often I wear a lapel button that says “I have an invisible disability”. If a store clerk talks to me and I cannot hear, I say “I am deaf in this ear, can you repeat that?” My boyfriend and my family let me pick my seat first when we visit, so I can hear them all better. I have met a lot of other people with hearing loss and I love to learn their coping strategies. Going deaf has been very isolating, but I am fighting back as much as I can.
Soon I will be getting my hearing aids recalibrated because my hearing loss has finally stabilized. I am still deaf in one ear, or partially-hearing at the best of times. And I’m going to continue wearing my Invisible Disability button on my coat.
Coming up: Concussion Poetry, Travelling, and the Computer