Living with Aphasia: Colin and Fiona
‘I have aphasia, it makes it hard for me to communicate sometimes because the language part of my brain was affected by a massive stroke.
Communication allows people to know me – so struggling can affect how people see me and treat me and also how I feel about myself.
It can be really frustrating – knowing exactly what I want to say and just NOT BEING ABLE TO GET MY BRAIN TO GIVE ME THE WORDS I WANT!!
The good news is, your brain can re-wire and relearn. It takes a lot of work, a lot of practice and a lot of patience – but I have trained my brain to use language again. It’s taken a LONG time – 6 years to get to write this….(with help) but I’m still training, and my brain is still improving.
I’m on a journey and I don’t plan to stop!
Kōrero Club has been so much part of that journey – it’s a place I can try new things without feeling self-conscious, because everyone there understands. It’s a place where we can laugh and joke and be our “new normal selves”. It’s a place help to others (sic) by sharing experiences and tips and support. It’s a place to get help from others when you’re having a tough day. It’s a group of like-minded people – just like any other group – its priceless!’
Colin
Colin’s stroke instantly transformed this young fit healthy man, husband and father. It robbed him of his speech, his mobility, his independence, his identity – and his life as he knew it. We take communication for granted every time we need to answer a question, express a need, tell someone how we feel or simply socially interact with others.
The inability to communicate challenges every interaction and every relationship to its core – from the closest of family bonds to the most superficial or fleeting interaction.
It is frightening, isolating, humiliating, frustrating, confusing, and exhausting.
6 years along our journey of recovery – Colin has regained much of his language through dogged determination, relentless practice and unwavering positivity. Some days are devastatingly hard, some days are joyously rewarding, and every day is a new opportunity to achieve a goal in what is the “new normal” of our family life. It is a new normal for us all, not defined by “how things used to be” – it is defined by the fact that Colin is still Colin, Colin is still the husband and the father, Colin has valuable talents and experiences to offer, Colin has many stories to tell – sometimes it may take him a bit longer – but they are worth the wait!
Fiona
Colin acquired aphasia from a stroke in 2013. He passed away in 2021 after a short illness. Colin was passionate about educating other people about aphasia, and Fiona is keen that his passion lives on. Those of us who met Colin will always remember him as a very special person who inspired others to be the very best they could be. As Colin said, ‘Life is a journey’. It may not be the journey you expected, but you keep looking forward. RIP Col.
