Je suis, je ne suis pas, says the main character in the novel I’m reading. She is at French classes, repeating the simple phrase, I am, I am not. I read aloud the French phrase from a novel, sounding like a native speaker. Bewildered, I stare at the page, I wonder, what the fuck just happened? I’m six weeks into my language rehabilitation course to relearn my – English – speaking, reading, comprehension skills as part of my recovery from brain inflammation. So far my progress has been slow going, I haven’t noticed much improvement until just now when these French words pop into my head.
I try again. Je suis, je ne suis pas. This is insane, I have never learnt French in my life, I learnt German at primary school, and wonder, how does this work? Am I speaking French now? This last year has been scary living with a brain injury, now I’m convinced my mind is going crazy, making random French connections.
I put down my book, rattled by what I’m experiencing. I feel I have no control over what’s happening inside my head. I’m busting my ass to relearn my language skills: I want to return to work. I want to speak English not French, French won’t help me get my life back on track. I feel like an alien has abducted my brain and muddled everything up. I’m scared, what’s going on up there.
I turn back to the page, I think, maybe my mind had a spasm, and I read the words incorrectly. I find the section, yes, there’s the French words, the character reciting her French class lesson. Pausing on the story, I think back to the first week of the rehabilitation course, remembering the trepidation I felt at starting this three month trial. There was no guarantee this would work for me and now I don’t even know what is happening inside my own head.
Each day of rehabilitation pushes me to the edge of my mental and physical endurance. The concentration required is intense. My brain aches half way through the hour, I feel a tingling on the left side of my brain where the headaches were. I worry, this really hurts, am I making my brain worse. The program is a hard slog. It feels similar to when I trained for the Triathlon Age Group World Championships. I’m exhausted by the end of the day and collapse into bed, mentally and physically drained.
I sleep at least ten hours and need another three resting in my rocking chair after breakfast, which is where I am now attempting to read this book. I find the storyline difficult to follow because I can’t remember the names of any of the characters or what they did in the last chapter. As I read one paragraph, the last paragraph goes woosh out of my memory. My brain feels out of control, unfocused, my mind wanders off onto a conversation I had with my sister last night. I’d asked her how her weekend was, she paused, saying Sarah, you’ve already asked me that – three times.
I don’t recall, did I? Oh, woops, well, I’ve forgotten already, how was your weekend?
She sighs, I feel like I’m talking to myself.
Ok, maybe we should talk again tomorrow.
I hang up, we’ve been talking for five minutes, and I managed to ask her the same question multiple times.
A little voice in the back of my head asks, is this what it’s like to be a zombie? Shut that thought down before I start scaring myself more than necessary. Tomorrow I’ll try harder, I think, maybe I can make notes while on the phone to my sister, that will help me remember and I’ll trick her.
I pick up the book again, and reread the previous page. I’ve been reading this page for the last day and not getting anywhere. Words are swimming around in my head, I can’t pin anything down into a logical order. Reading is part of my rehabilitation, helping prompt my spelling and grammar skills, but sometimes, like today, it’s too much effort.
I find the process of relearning brain skills slow, and because it’s invisible, I don’t know what my brain is doing, it hurts constantly. I’m not in control, invisible forces are healing my brain, what I hope is happening is neutrals are reorganising and correcting the disturbed circuits in my brain. I can’t see it happening, I can only try and see if this will work. I don’t know my brain’s own timetable, all I can do is measure my own progress by how much I read and what I can comprehend. It’s not helping my amnesia, however I am speaking a little better.
Life otherwise is boring. I wear ear plugs constantly to reduce the noise pollution in my recovering brain, an essential part of rehibiliation.
First six weeks, I didn’t notice that much, I felt a little more able to talk. After six weeks is when I started to pick up a book. Can I trust my brain’s own timeline and let it do its job? How will I live life in the meanwhile, it’s so boring.
I sit down to dinner with my parents. Dad’s cooked a roast lamb, potatoes and vegetables – one of his specialities. I shield my eyes from the kitchen light, the lights are too bright for me. I ask, can you turn the lights off?
Dad opens the oven, the smell of roast lamb fills the room. All this information confuses my tired brain, setting off the pinball machine inside my head and makes me feel nauseas. I’m not sure I can eat anything.
Dad brings the roast to the table and serves up. Even though I’m wearing my ear plugs, this is all too loud for me, the pinball goes ding, ding, ding, I ask, Can you please be quiet, that hurts my brain?
Carefully starting our meals, Mum asks me about my day. I’m exhausted from the daily exercises and don’t have the energy to talk. I reply, Can you please stop talking and don’t ask me questions, it hurts my brain.
We continue in the dark, eating like silent monks, my parents doing their best to make me comfortable, the only sound is cutlery on plates, which is irritating my tired brain. I plead, Can you please not scrape your fork on the plate? If everyone can be very quiet, that would help me cope. Don’t they realise how hard this is for me? How much I am trying?
I’m lost in my own muddled thoughts, trying to stay awake through dinner, when Dad breaks the silence, I can’t see my food, I don’t know what I’m eating. I want then and there for this brain recovery to speed up so my life, and the lives of the people around me can go back to normal.
I think back to the last six weeks when I’ve continued this program, not missing a day, even Christmas Day or New Years to complete my training. I’m living like a hermit, I’ve missed out on celebrations and parties. I have eliminated anything that will take energy away from my brain, I need all my energy to heal my brain. It’s a lonely existence, not sure how long it will be, and how long it will take.
Dad takes a drink and the ice cubes clink around, the noise so loud it hurts. I glare at him, he says, sorry I didn’t think that was that loud. He puts his drink down. I sigh, how did my brain get so broken?
Surviving dinner, I hide in my room, evaluating my progress in this program. Am I getting any better? I’m still struggling with simple life skills like eating a meal. I try to remember what improvements I’ve made in other areas but the fog of amnesia stops me. I flop in my rocking chair defeated. Then a random thought reminds me of my diary.
I search out my diary where I’ve been keeping a weekly log of the new skills I’ve acquired. I look over my notes from the last week:
Read one paragraph of a book.
Had a flashback memory of primary school – yahhhhhh .
Sorted the cutlery drawer – it’s a miracle.
Heard French words in my head!!!???
I stare at my handwriting in wonder, oh, right, I AM making progress. I’m actually further along than I remembered. My injured brain can’t keep track, I feel it’s playing tricks on me, telling me I haven’t progressed when actually I’m constantly reminding myself I’m improving. I find it frustrating, I’m going round in circles, I think, What else can I do but keep making notes until my memory improves. I want to have more faith in my brain. I find it hard to trust that it knows what it’s doing, because I can’t remember what’s happening.
For good measure, I add to the log: memory still really bad, can’t remember anything that’s happened in the last week. Couldn’t remember this diary even existed.
I read on further. I’ve written, I’m so excited – I’ve been invited on a Podcast!!!!
This entry jogs my memory to a few days ago, and a phone call with Peter Barnes, CEO of LearnFast, the company that’s providing my rehabilitation. He had followed my progress, as the program was originally designed for children with learning difficulties not brain injuries. Apparently, I was progressing through the program really quickly, improving my listening, reading and comprehension skills. I recalled him saying, this is just really, really interesting, ’cause the program wasn’t designed for this purpose, and it’s just fabulous.
I then told him about the feeling of tingling down my brain, and how it felt like a waterfall, where the headache was. He replied, I’m getting goosebumps hearing you talk about this.
You have such an amazing story. We should share it with our audience on the Learning Capacity Podcast – it’s inspiring.
Quickly I said yes, I’d love to be interviewed without really thinking about it. I can’t even have dinner, a meal and conversation – How am I going to speak for an hour on a Podcast? I can’t even remember anything that’s happened to me, I need to use notes. How can I trust my brain to work when I have no confidence in it?
After the conversation with Peter, I felt hopeful, motivated and confident I was getting better. Maybe I’ve got this all wrong and my brain can recover from this injury. How could I not see those French words were my brain working? Perhaps those connections were a miracle after all.
Je suis un miracle.
Thanks for listening
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