I believe that kindness is the key to enabling conversations about what matters to you. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets.
Sharing one’s lived experience takes courage – this is my story.
Life doesn’t always work out how you think. Disability can happen to anyone of us at any time for various reasons: car accidents, work accidents or even a mozzie bite. We never know what life has in store for us.
I am a carer for two very special people in my life. My mother in law who is now a frail 88-year old lady with advanced dementia, and my younger brother who suffered a birth injury resulting in an intellectual disability. More recently he was diagnosed with leukodystrophy.
Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the myelin sheaths protecting our nerves. Often the cause cannot be found and there is no treatment or cure.
Intellectual disability or cognitive decline can be an invisible disability and it takes time to fully understand and accept what is happening for your loved one. It’s like a grief process that you need to work through for your own health and wellbeing, including the disbelief at the time of the diagnosis – this can’t be true, you’ve made a mistake, can’t you just fix it!
Overwhelmed and alone
I didn’t recognise myself as a carer, as many people don’t. It just seemed a natural thing to do, but trying to come to terms with the illness of two people I loved dearly was not easy. I felt overwhelmed, frustrated, anxious, angry and guilty, especially as a healthy sibling. I felt alone and it was as if no one understood or was even listening.
The treatment I received from health professionals was mostly wonderful, but some health professionals were not all that compassionate and I felt intimidated and bewildered at times.
One day when I was feeling disgruntled my dear friend Annette Walker just happened to pop in for a cuppa and a chat. She listened to me pour my heart out in a non-judgmental way; then she asked me the most odd question: “Deb what do you want your life to look like?”
My first reaction was, what sort of question is that? I’m not talking about me; I’m talking about my brother! I want him to be safe, happy, content and living the best life that he can.
But Annette’s question played on my mind for a few days. What do I want my life to look like? How can I make a difference? How can I enhance my brother’s life? Something had to change; I couldn’t keep on doing what I was doing.
Then I saw an advertisement in the local newspaper calling for consumers/carers to engage with the local health service to give their voice about the planning and delivery of health services. I wondered if this was something I could do, as I had no experience in the health sector.
I decided to apply and was successful. This was the beginning of an extraordinary journey as a consumer/carer representative. I did a training program organised by Carer’s WA which built up my confidence. My life changed. And it all started when Annette asked me what was important to me. The question had changed my mindset, which then allowed me to make changes in my life.
I was welcomed by the team at my local hospital, supported and encouraged, listened to, respected, assured that my lived experiences and feelings were valid and important. It gave me a purpose, a way to give back to my community, to make the journey just a little easier for the next consumer/carer.
In my role I’ve been able to contribute to improvements in the health and disability sectors at a local, state and national Level. I would never have imagined these opportunities existed or even that I could make a difference.
This is what I want my life to look like.
Kindness is the key
I believe that kindness is the key to enabling conversations about what matters to you.
Kindness doesn’t cost anything, but it can make a profound difference to others. It gives consumers and carers the confidence to ask questions, increase their understanding and health literacy, and it makes them partners in the planning of their care.
Kindness is life changing – it builds trust which then builds collaboration and partnerships. Kindness builds teams which then increases patient safety. It breaks down barriers and changes mindsets.
Kindness is the enabler for everything that matters to each of us. Let us all catch the “kindness bug.”