Pieces of the Puzzle
I’m recovering from a brain injury. But there’s more to me than that.
I have a neighbour over the back fence who mows his lawns regularly and slowly. I imagine he’s a perfectionist going carefully around the edges (we all know the type) or walks at a snail pace (he may well have arthritis). I don’t know for sure, I’ve never spoken to him. Perhaps both: a perfectionist with dodgy knees. Healing from a brain injury, it’s obvious I have nothing much to do except make up stories about my neighbours. What is true is this: he has this uncanny knack of starting up just as I’ve sat down with a pot of tea.
Loud sounds – like a mower – have me running for cover. Abandoning the tea, I’d hide in the room behind the garage, wrapping beach towels over my head to protect my brain. The sound reverberated in my head and somehow – if you can believe it – caused a physical pain like a sledgehammer inside my skull.
I’ve lived like this for over two years. Isolating myself from shopping centres, ignoring phone calls, rushing past construction sites. Avoiding sound is hard to do. There is noise everywhere in the world. Even when we are sleeping. There is no ‘off’ switch for the ears.
Yesterday, I heard that dreaded mower start up again. It seems people are mowing more frequently during COVID restrictions. Instead of my usual scouring face and homicidal rage, I found myself staring towards the racket and realising I’m ok. No headache. No running to the garage. Tea still in hand. It does not bother me, I think to myself. I repeat myself out loud this time. It doesn’t not bother me! The mower droned on. I can’t hear my own voice. I yelled once more over the back fence for good measure. I was in shock. What has happened? Can I dare to dream of a future without such a debilitating injury?
I searched for a diagnosis for eighteen months. Eighteen months since the triathlon race and the headache that never went away. Eighteen months since I sat down for my post race dirty burger at a cafe where a clumsy waiter dropped a handful of cutlery on the table behind me causing me to jump out of my seat. The world sounded too loud like someone had turned up the volume dial.
I saw dozens – yes dozens – of doctors. I have noise sensitivity, I’d say. I get headaches and migraines from sound. Often their response was, that’s too bad. Or they’d say, learn to live with it – there’s nothing you can do. It was the same response to my tinnitus.
I tried to take their advice. I avoided loud places. My parents walked on tiptoes around me. There was no music or television. I stopped leaving the house. How could I learn to live like this? It’s an excruciating existence. The injury had already narrowed my world and it was getting narrower.
I have no background in science or medicine but I knew I had not exhausted all possibilities. Surely someone has the answer. I read. I researched. I joined online forums. I wrote to neuroscientists. No one seemed to know.
At the risk of getting the “learn to live with it” lecture, I tried once more. At the end of my appointment with my family doctor, I mentioned the sound sensitivity. Almost as an off-hand comment, he says, you could try seeing such and such. She’s great for people with noise sensitivity. Her program is designed for children with learning difficulties but it might help you. You can only try. For the first time, I had direction. I had hope.
To me, hope means there’s possibility for change.
I eventually found out there’s a name for it: central auditory processing disorder (CAPD). It means my ears can hear fine, but my brain is not coordinating the sound coming in. It explains so much. My reaction to the mower. A dripping tap. I feel less alien and more human. A human with a little wiring mixed up.
I started sound therapy eight months ago. Within four months my auditory processing had improved from 1% to 10%. I inch forward. I am retraining my brain to process sound and I realise it’s gonna take some time.
On the flipside, I note there is 90% room for improvement. I’m due to be retested soon. I cling to the hope that things can get better. I feel an anticipation of life returning to me. I ‘d love to sit in a cafe with a bunch of friends. Walk along the beach. Talking on the phone. Listen to music. There are so many possibilities.
I find healing of a brain injury comes in stages and there are different markers that signify progress. Numbers and stats might be what doctors and therapists use but how does that translate into real life? I notice the dripping tap is less annoying. I can turn the tv up a little. Of course, the biggest signpost is the mower and the (lack of) headache.
Lifting my teacup towards the back fence, I silently thank my neighbour for helping me realise how far I’ve come. Like say in Australia cheers, mate.
As my family doctor says, we are putting together a 10,000 piece puzzle – this is one more piece.
My sound therapist can be contacted here.
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