I sometimes feel over-stimulated – it can be emotionally, visually, intellectually and/or auditorily. The latter is one of the most frustrating symptoms. It’s called phonophobia or hyperacusis

At first, I couldn’t hear or participate in a conversation longer than 30 seconds. After a conversation, I had to rest for at least an hour, if not longer. We realized how disabling sound was for me, so we bought Bose headphones, the over-ear, sound-cancelling ones (Bose QuietComfort). I still use them in the car and when I have a day that requires complete rest. And, thank goodness, I can now use them to listen to music or podcasts from time to time.

I’ve had serious problems with the following sounds:

• My partner’s voice when we’re very close or when he speaks in his normal tone: he’s had to modulate his volume and speed
• dishes and cutlery – when I use or wash them and when I pick them up
• shower water – I use earplugs
• the sound of the street in a car
• flushing the toilet – especially the first time of the day: I cover my ears with my shoulder and one hand
• one day, even the bubbles in the bathtub made me anxious
• and the most frustrating – music

I used to play the violin occasionally, listen to music at least 2 hours a day, dance while cooking, etc. And suddenly, I found myself living in the quietest environment possible to the point where silence sounded like shhhhhshshhshhh – or the constant low ringing – of nowhere.

It was hellish. Alone with my thoughts of frustration, of being worthless because I can’t do almost anything…because at the same time as this symptom, there was also visual disorientation, extreme fatigue and more.

The most important lesson I found in this hole was that I had to work on changing negative thoughts because they plunged me into more psychological suffering and I realized that my hearing was not going to improve quickly.

There were several processes.

First, I had to accept the reality of what was happening to me and not spend time wishing it weren’t like that. It was also about accepting myself as I was – with one or more disabilities – and then also learning to love myself in this way. Instead of rejecting the brain that worked differently, I made the decision to love it. It required and still requires practice and patience. I had to realize that the brain was working very hard at every moment to keep me alive and that if I thanked it for its effort, I felt at peace…but if I punished it for not doing more, I felt even more stressed. Sometimes my brain wasn’t at its best and I had to learn to listen when it asked for a break.

At the same time, there was a grieving process. I lost a new job for which I had been training for almost a year. I lost the opportunity to study a new Master’s degree. I lost my vivacity. I lost the possibility of playing sports – particularly football. I lost the ability to learn, to be a good partner or a generous friend. I had to accept that all of this was no longer part of who I was. That grieving process was a long one.

And finally, I started to find ways to fill the silence when I couldn’t do anything: thinking about good memories and enjoying them, doing breathing exercises, talking to my ancestors or doing meditations.

Now, almost 3 years since the day of the accident, I generally spend the days with Loop earplugs (below). They are more discreet than the Bose and the version I bought has 3 levels of openness depending on the circumstance you find yourself in.

Doctors say hyperacusis/phonophobia is one of the last symptoms to go away – it takes a long time. I have my fingers crossed! (And I’m still going through my therapies.) The newest hope is a neuroacupuncturist who specializes in TBI. I’ve been once…no review yet.

Now I sometimes listen to music and sometimes I don’t. There are genres I can’t stand anymore, though. I’ve learned to enjoy soft piano music more and I know that lower tones tend to comfort me more and higher tones bother me more. Conversations can last an hour or more – or sometimes I have to excuse myself and leave a social situation. (I spent 3 hours with two friends last night and came home feeling very energized.) I’ve gone to high school basketball games, and I’ve also decided that sometimes I shouldn’t go.

Most importantly, I now try to listen to my body and brain input and follow their physiological advice.