Sarah Jane Gapp

What does it mean to you to be named the winner in the Courage Award?

It's a privilege to be acknowledged by the peak body for stroke sufferers and their carers across Australia. I see this win as a potential opportunity to make a difference to the lives of thousands of Australians.  

How has stroke impacted your life?

My brain stem stroke had catastrophic impact on all areas of my life.  

Physically, I no longer swallow to enjoy food and drinks with family and friends. My loud portable suction machine is my constant companion day and night, without it I would die. My speech is exhausting, raspy and difficult to understand, making communication a frustrating experience. I sleep ventilated every night, and am forced to lie on my back. I can no longer walk, run, dance or move freely in any environment. My co-ordination has been effected so all my hand movements are limited and frustrating. I now require 24 hour assistance and have lost all my independence and have people permanently in my personal space.

The emotional and spiritual impacts are profound and all encompassing. The journey from heartbreak and devastation to acceptance will be a life long struggle. The isolation from friends and community will be a lifelong challenge. Adapting to such profound limitations alienates me from people, because I do everything so differently. The stroke is now the most significant part of who I am, the things I can do and more importantly the things I can’t do.

Every day I miss the friends I have lost by saying things out of frustration, sadness and heartache. The exclusion from my main friendship circle has made my life so sad and lonely in a way I did not expect. It’s not only about not being invited, it’s about people’s lack of understanding.

Only fellow stroke survivors understand the difficulties and limitations following a stroke that occurs so suddenly and unexpectedly.

This impact will never going away, it’s here with me for life. I have been thrust into a world I’m not ready for, didn't choose and don't want. I now find myself relearning everyday physically, the life skills I have lost and emotionally, the sense of who I am and my direction. Over the last eight years I have had to physically push myself. 

What is often overlooked, is how emotionally draining it is, and how much stroke effects all your brain, making you feel mentally foggy and fatigued. From the moment I wake to the moment I go to bed I'm constantly using my brain as nothing comes automatically and that is exhausting. 

Why is raising awareness about stroke important to you?

If I had been diagnosed and treated within the recommended three hour time frame I would have walked out of hospital. My whole life was changed in 10 hours. Education and awareness is the only way to avoid such tragedies from recurring. Educating the paramedics, emergency staff and consultants to respond with urgency to stroke symptoms. Educating the community, including young people like me, to take these symptoms seriously. A similar response protocol to stroke to improve outcomes is possible in the same way heart attack response times have been vastly improved with far better outcomes.

Raising awareness about stroke is important to me because it's more common than people realise. I hear all the time from the medical profession and the community that “it’s so unexpected in someone your age”. This is simply not the case and this is my second, main message to people.

The tragedy of stroke is that delays in diagnosis, treatment and limited levels of after-care are leaving people with severe disability and health issues that could be avoided. These delays come at an astronomically high cost to the patient and to society. In my case, my working life was cut short by some 45 to 50 years. 

I may not represent the majority of stroke sufferers, as spontaneous brain stem stroke is uncommon, but I represent the extreme impact stroke can have. I understand the journey of nearly all stroke sufferers because all parts of my physical being have been severely affected. In this way I consider myself a great spokesperson as I can relate to stroke patients, and most people can relate to my journey of struggle.

This award will help with my main goal to become a public speaker to inform people how important your brain is and that life shouldn't be taken for granted. Stroke knows no boundaries and I want to create awareness that stroke can happen to anyone of any age at any time.

What inspired you in your recovery?

Other people’s belief in me and my strong belief in myself 'if you never try you will never know' – I'm a firm believer in that. Every day I like to try something new. I've been given this life and I'm going to make the most of it. My dogs and family are important to me. From little things, big things grow. So I strive to make small gains constantly. Re-learning to do small tasks might seem trivial to able-bodied people but when you cannot do much for yourself, they are a big deal to me. I also want to acknowledge mum as I couldn't come this far without her. She's given up a lot for me, even through her own battle with cancer, she never left my side. Without her pushing me and her strong belief in me when I didn't believe in myself, I probably wouldn't be here.

What is one thing you would like people to know about stroke? 

It's common and can happen to anyone. I was fit, sober, hard-working, motivated and healthy. Strokes can be debilitating and have no warning. We have the technology to improve outcomes. We have an educated society of professionals to assist with stroke diagnosis, treatment and care. All it takes is a commitment to real change and resources directed to improving outcomes. In the end it will be a win-win, for the stroke sufferer and the community that bares the high cost of avoidable disability and unnecessary suffering.