“My name is Sue, and I am 61.
Four years ago, in August 2019, I had my stroke in remote Far North Queensland while on a 4 wheel driving holiday with my family. Thankfully, we were staying on a station that had a satellite phone and the Royal Flying Doctors airlifted me to the closest major city Cairns, 1000 km away.
Tests confirmed I had had an ischaemic stroke on the left-hand side of my brain. A blood clot blocked the flow of blood and oxygen to my brain.
Doctors gave me the devastating news that I probably would not be able to talk again! Can you imagine what I was feeling? I was all alone as my family was hurriedly driving to meet me. I couldn’t contemplate not being able to talk. Our speech is so important in our day to day lives.
I now know this is called aphasia, and it affects a person’s ability to express and sometimes understand written and spoken language. Every person’s aphasia is different. I remember at the time, miming a gun and pointing to my head and thinking just shoot me. I was so distressed! More than 140,000 people in Australia have aphasia and the numbers are growing by approx. 20,000 a year. It’s an invisible disability.
In addition, I have right sided weakness in my body. Everything feels different on the right side from pins and needles to numbness and pain. I also have some problems with short term memory, depression and grief, and extreme fatigue.
In the early days my focus was on learning to speak again. I would read aloud from newspapers and books, especially children’s books. I was determined I would be able to read to my young grandchildren and to sing to them, which I can now do!
I am particularly proud of this achievement but now I am focusing more on my physical and mental health. I go to physio twice a week and talk to a counsellor every fortnight.
I find that telling my story is important for my recovery, and to address the grief and trauma associated with my stroke. It’s not helpful for me to discount the way in which my stroke has affected every part of me, my husband, and our families and friend’s lives.
Naively, I thought if I did the hard yards in the early days that I would be back to my old self. Sadly, that’s never going to happen. Struggling to accept and adjust the “new normal” is still very difficult.
Learning to accept help for even basic tasks like cooking, washing and cleaning, going out socially by myself and even getting back my driver’s licence has been difficult for an independent, intelligent woman like me. The stroke did not affect my intelligence even though I may talk a bit slower and some of my words don’t come out quite right.
My husband Theo, my family and close friends have been beside all the way. Without their support and love I would have not made such big gains in my recovery. Intensive therapies from caring professionals eg. Physio, speech, OT’s, counsellors who invested their time in me has been invaluable, though rehab in the early days of COVID was a difficult time for everyone.
I also go to two support groups. They give me a sense of belonging. We can laugh, talk, and cry. It is a safe space to be.
Earlier this year I went to Europe for a month. It was exhausting, but I DID IT! Next year we plan to go back up to Far North Queensland to finish the trip that was so rudely interrupted by my stroke. We have named our caravan Unfinished Business. Future travels include seeing more of Australia and overseas destinations.
In the meantime, I am working on accepting my new normal and not being defined by my stroke. I didn’t imagine how hard my recovery would be.”