Layers

LAYERS

The stripping back of layers

Creates an image in my mind

Putting words to an unfolding

Myself reclaimed, I find

Each layer no matter what the thickness

Weight of the past attached

Peeling back translucent skin

Discovering what today I hatched

An inner strength

Community compassion

A feeling of complete

Self-acceptance, loving heart

Flow from head to feet

Living without connection to other young stroke survivors or to other people who have held themselves as they were either born with disability or had life events which has led to disability has been confusing and alienating. The recent Young Stroke Project allowed some people to have a say of what their experience of stroke and life after stroke has been like, I was involved with the hope to help create some attitudinal change amongst the general population as well as share some moments from my life after stroke. I participated whole heartedly in this project, meeting so many other people along the way.

Recently as I’ve had more head space to look at my health I decided to have an xray on my hips knowing I’ve always had a left hip that just didn’t feel right. It turns out I have mild hip dysplasia in my left hip - that explains a life time of restriction of movement, pain and fatigue that I didn’t realise were impacting me and everything I do. My first thoughts went to acknowledging some very sad memories involving physical activity and fatigue when I was young. I had to put the pieces together. And then I moved onto - but I want to run a half marathon next year! Will I still be able to train towards that? Yes I will.

So I’ve now got more targeted exercises, more knowledge about myself and equal amounts of self motivation, more awareness of just how fatigue impacts me as I am now. I’ve never paid too much attention to my fatigue, but now I can see how day to day activity, planning, delivering and processing does leave a mark on my ability to operate as functionally as I want to so I can achieve what I want to.

Which is where the NDIS comes in - if I hadn’t been accepted into the NDIS, I would not be where I am today. I understand evidenced based practice and more current treatments for trauma is what has moved me forward. Being self directed has been important too - the unmet needs from a traumatic time in my life have been carried in my body. And of course I know I am not alone in this - so where is the opportunity to celebrate my success with other people in similar situations, where is the opportunity to go - hey this hasn’t been researched enough to show it’s evidenced base here in Australia - but it’s worked! It’s a cycle that stops me in my tracks whenever the NDIS comes up in the news, it physically and emotionally affects me and I become a wobbly and ashamed version of myself. I’M SORRY AUSTRALIA FOR BEING SUCH A BURDEN - BUT GIVE PEOPLE IN THE DISABILITY COMMUNITY THE OPPORTUNITY TO SHINE WITHOUT THE STIGMA! I’m 54 and people my age and above will have memories of news items “catching out” people who claimed the Disability Support Pension and were shamed publicly on Prime Time Television, so alongside my life of gratitude no wonder there’s the part of me who wants to hide. I invite people who knowingly used derogatory words to shame people with disability to be honest about their ignorance of how this impacts people living with disability. I’ve been in social and work situations when this has happened - and what happens to me is that I go speechless, the connection between my mouth and the trigger doesn’t work because I am so gutted by people’s ignorance.

Add to that the need to be in professional spaces where innuendo is never something I use - it’s hard enough to be taken seriously in these spaces let alone having a health professional thinking I’m using some sort of code to talk just because I have been impacted by Aphasia after my stroke. That’s happened to me before - to have been mocked at mixing up my words - such a humiliating and tiresome part of my very attempt to communicate and be respected.

A recent show on the ABC called “Headliners” was exactly what I needed to see. Thank you to Elly-May Barnes and the team for bringing her idea to life and delivering such a “sit up and take notice” production. The growth in everybody on the show was a message of hope. The exuberance that the band members showed was a trip down memory lane for me as I recalled the absolute joy and the disillusionment when trajectories for me were so bad. The program had teams to work through the trying times. Supportive teams are important.

If I circle back to when I began advocating in the Stroke Space in 2016 - I was wondering where everyone got their hope from. I understand the need for research and how it is a slow integration from discovery to implementation. I wondered where people living with stroke were involved in research. In asking this question - I just found there were more questions than answers.

My questions had no answers and so I made an impact where I could by beginning to highlight publicly the gaps I had fallen through in my own recovery in the hope that it was glaringly obvious more work was needed to be done - and fast to help prevent people from falling through similar gaps. In doing that work people living with stroke needed to be included in finding those solutions and not just in a tokenistic way. So as 2024 is coming to an end I get reflective of life since my stroke, I am quiet at the internal strength I have lived life with. A book should never be judged by it’s cover, and a person should never have assumptions made about them. I am very solemn about this fact as I remember lying in my hospital bed having no self protection. I’ve worked so hard to be self-directed in facing those moments of terror.

So ending on a more positive note of hope - which is where Elly-May Barnes left off in the final episode of Headliners I will go back to the poem I wrote after attending a forum where stroke survivors, family members and health professionals met to discuss the future of stroke from a collaborative way of working. I haven’t forgotten what it was like to leave feeling hopeful about attitudinal change in the big picture of stroke. Sometimes in this space I think it’s expected that us survivors forget about so many things, I don’t forget the work I put in for change.

HOPE

Someone gave me hope today

So please do not try and take it away

I need hope to enter my wounded spirit

Love care and compassion to fill it

Hope can conquer my darkest hour

Four letters which release enormous power

Power to live my life

Give to others

And heal

Let hope not be a dream

Let hope be real.

Love

Nina xx