July - Disability Pride Month
I DID IT ALL FOR YOU
I did it all for you…..
Mistakes, the misadventures,
The successes and the;
“Oh, I’m sorry - did I hurt you?” :-(
You can tell me all your pain.
And I will be your mirror,
To take it all and spin it,
Return to you; your hero.
What’s a poet for ?
If not to make you feel,
And I’m right in front of you,
Listening to the real;
Story of your life,
Beyond your uniform constraint,
I’m still healing me;
Learning how to paint.
With stardust on my paintbrush,
Imperfection still in flow,
Thank You Mother Earth!
For allowing me to grow.
This is the only photo I have of me from my days in rehab - the photo - which I have cropped because I’m looking only at my eyes, the depths of shock of what my life had become, which also included the deep deep love I was giving my truly injured self at the time. Continuing when there was no direct day-to-day connection from life as I had lived it up to now. So there was also a deep deep knowledge that there was no nurturing in this now very hostile, sterile world of recovery. The photo was taken on my first weekend when I was allowed out of rehab sometime in May 1993. It was a big decision to show this photo, because all I remember anyone telling me was, “You’re doing so well!”
I’d stare back at them with disbelief, shocked before surrendering to the internal despair that flooded through my being. The power imbalance was like me being on one side of the river and any kind of caregiver at the time being on the other. I was so disconnected from what they were saying and how I was feeling - I blocked out the pain…so tired of feeling like I was being pacified as my floppy uncoordinated body gaited ungraciously through space.
In my memoir which has been such a journey of self-reflection and courage, I write about what it was like to drive away from the rehab for the last time, still so unwell and devastated that no one had even attempted to treat me and my husband at the time as a young grieving couple, from the country out of our depth in every way.
The despair settled in my being as I thought to myself that one day - people would know the truth of what happened to me before my stroke.
Since 2016 so much of that despair has emerged, my journey of healing no doubt scared my children to bits as they witnessed their reliable mum fight for better understanding and treatment of stroke in this day and age. Barely glancing at the wreckage of my own trauma I was moving through I just kept going. If I was asked why, the answer probably wouldn’t satisfy anyone. So I’ll try and explain it.
It’s July - Disability Pride month - the NDIS is in the news again, the cost, the cost to tax payers….as are discussions of domestic violence…..and I struggle with the P word. What does the future look like for people with disability and how do we demonstrate pride when there are so many conflicting reports about the scheme and what it’s achieving or how much money is being wasted. I breathe and try to rise above this negativity, I think of the kids being exposed to this confusion… I always think of the kids.
Do I enjoy turning up at the gym or my local park run - knowing that I walk, run, and exercise with movement that collectively over time has been publicly ridiculed by way of name-calling and rejection? NO. But once immersed in my exercise I choose to do what’s in front of me, despite this knowledge.
I’ve even progressed to a “Bear Crawl” pushing a ball in front of me at the gym while up on my hands and toes - and to give you an example of where I was at with this exercise a few years ago, I was only able to crawl on my hands and knees. Improvements are gradual and on my terms, it can be so deflating to be expected to do something I am just not ready for, I don’t need anyone to motivate me - I am self-motivated, what I do need is timely, respectful adjustments to progress me through to the next recovery stage. So if anything reflecting on this achievement of a successful bear crawl fills me with pride because if I make this public then it shows how no matter how many times someone says to me “You don’t look like you’ve had a stroke” then I am sharing for all those people who are told the same thing. And if I did look like I had a stroke, what would that mean to someone?
Do I enjoy noticing any improvement ABSOLUTELY, or any inclusion where I’m given a voice - YES. So without the NDIS, I would never have known what it was like to reach this level of personal connectedness……..in return for the privilege, I turn up to the gym or to life giving my 150% focus, noticing any change which expands my level of inclusion. If I wasn’t able to receive this support now, the trajectory of my life would be a slippery slope! I know that for me, oh please give me the recognition that I have the intelligence to understand this!
But it’s not only the gym - I’m engaged in small amounts of work activity that stimulates and meets my intelligence, how many people living with disability are craving intelligent engagement that lifts them towards fulfillment? After so much advocacy in spaces which has been isolating at the vulnerability of my voice, it is time to take a breath and wait patiently for any outcome that the collective voice I contributed to made. I’ve done and continue to do the work.
In flow I write with such hope: this poem was written in lockdown, while the world was hurting collectively from Covid: I rose early most mornings to walk - because I could walk and I will never forget the time spent relearning to walk.
BECAUSE I WAS DELIGHTED
Someone wanted to know…
Why I smiled at the grey,
Well, it’s because I was delighted!
What else is there to say?
When I rose to greet,
A day so very ordinary…
I really felt delighted,
That life was so extraordinary.
An open mind has grace,
For a pause to hide.
An open heart has space,
Breathe: For the most delightful ride…..
So maybe for the first time, I am moving about in life with that elusive pride that I’ve struggled with.
Peace
Nina Wilde xx