Fixing my brain

I read a book about recovery of a woman in USA who had a stroke with brain injury so very similar to mine. Her name is Christine Hyung-Oak Lee and the book is titled “Tell me everything you don’t remember”. She said she had aphasia too. Her stroke was at the end of December 2006. It took her more than eight years to recover as much as she has. So far I’ve had five and three quarter years to my stage of recovery, but that’s a little less than hers; I need more years – maybe three to have as much recovery as she has had. There are differences or similarities between her and me.

I haven’t ever had a person living with me as a carer.

I have lost friends.

I (still) have problems with my language.

I can no longer work.

I couldn’t read a book for two years after my stroke.

I write almost every day, but not always readable.

I stare at the wall.

Sometimes I stare at the TV.

I play card games on my laptop, even if I should be doing other stuff.

I attempted suicide two and a half years after my stroke.

My life has changed so much, from my ‘normality’ to stroke recovery / aphasia recovery. I have recovered a lot of my memory and I have started to write my life history, mostly so I can remember but also so others can eventually read about my whole very different family – different from ‘normal’.

Lee’s 83 year old father had his first stroke 8 years after his daughter did, and he’s survived from it. Just a bit different for my family: years ago, after retiring, my father had his first stroke. It was the fourth one – I think – which killed him in 2000. He was 70. My mother had a stroke too, in 2006, which put her into an aged care home. She died in 2007, still not recovered from that stroke. She was 75. Now I’ve had mine, and I was 58. I’m still alive.

Why does this book sound like me? It was only written two years ago, 2017. I used to write before my stroke, and I had started writing a book too, but mine was fiction. It wasn’t finished until after I had my stroke so I wrote more in it and got it published in 2015. I feel quite guilty about it; I know it read very differently from about half-way through it. If I had re-read it and edited it it over and over and over I may have made it good fiction. At the intro event a couple of the women who came along and had read it said they thought it was very good, for them. That would have been read by people who understood rape. I just wanted to get it published.

In 2017 I started an under-graduate course with Griffith University, majoring in journalism. I now think I would have preferred to have majored in creative writing: I used to write much better than I seem to be able to in my recovery. Will I ever get back to my ‘normality’?

Later that year I had started a short-hour job (part-time, ten hours a week because I would get so tired in the afternoon) which a support person at CPL had found for me. It was RRTWC (rehabilitation of people who had injured themselves at work), and after the first six months there I couldn’t really do that, even though it had been part of my WHS position: I have my old Graduate Diploma of OHS and I’d had seven years as an WHS person, but I can’t use that now. I was shuffled around into the HR group, but three months later I was made redundant.

In 2017 my son in NZ got married, and I flew over for the wedding. One year later in 2018 Alicia, his wife and my daughter-in-law, died. I flew over for the funeral. For me, that sounds so very similar to the grief that the author felt when she went to a funeral for her husband’s mother, her mother-in-law.

I’ve been in my unit where I am now for the last two years, and thankfully it’s the best place I’ve been in for years. I am alone here, just with a cat which adopted me. I still have my car (I’ve had it for eight years) and I can still drive – if I couldn’t have then I would be stuck in here alone every day and every night. Or maybe I’d already be dead.

But my life is very different than before my stroke. In fact I truly wish that I’d never seen 2013 or 2014 and I’d never been into hospital for my brain aneurysm surgery followed by the stroke. Lee’s book encourages me, though. Her recovery is longer than I’ve had, and because there is so much similarity between her and me, I think I can count on the full recovery that she has made. She said some things that I repeat for me, now.

“The language of my stroke is forever in my brain.”

“My life fell apart and then it rebuilt. Everything healed. And life started again.”

“There is space in my brain. There is space in my body. There is space in my mind. My body is no longer at war.”

I hope that will be me, too.