“You poor thing'”

“So young and you were so beautiful!”

“So awful to have to walk with that pram”

“I’m so sorry, that’s just cruel!”

These are a few remarks I receive when I tell people why I am like I am. I get pity, a hug or blessing or stare.

I feel ostracised, like a bit of rubbish. So alone, unwanted and disempowered.

I become my disability. I am a stroke victim…. 

I write in my book #reinventingemma about my newly acquired stroke deficits and the long ‘”problem list” generated from the many people who robotically assessed me –

“… The bleeding in my right cerebellum affected the right side of my face and the left side of my body. I couldn’t sit or stand upright, so restoring my balance was a priority. Bed or wheelchair-bound, I now existed in a topsy-turvy spinning world where everything was double. As well as feeling perpetually dizzy, any movement was made worse by the nerve damage from the stroke. My left side felt like it had been dipped in hot wax, lifeless and stiff but with raging nerve pain trapped inside. As I couldn’t close my right eye, it was taped shut to allow me single vision. The right side of my face drooped. I had no sense of my body in space, where my mouth, eyes or fingers were. Basically at this point I couldn’t sit up, turn my head, point, blink, talk or eat anything other than thickened fluids…These new deficits made me disabled, trapped and categorised. I felt handicapped, an aberration.” (Reinventing emma, p 119)

Some of my medical list reads –

  • I can’t walk properly.
  • I can’t balance.
  • Ataxic (I shake)
  • Dysarthria – I can’t speak properly and slur my words.
  • Facial palsy – I have a lopsided face
  • Diplopia – I see double of everything 
  • Nystagmus – My eye’s flick

This is a never ending list – I could go on and on… Depressing huh? Some people just call me handicapped. 

 

After feeling so engulfed in my new disabled realm, many awful experiences and a moment of epiphany on a train, I chose to change my attitude.

I reflect on this event in my book reinventing emma writing –

“The train stops suddenly and a white cane zigzags on board, followed by a blind man. I immediately turn away, knowing that others will stare. But then his self-assured manner prompts me to turn back. How could he be blind but look as though he is walking on red carpet? How are his physical limitations riding with him but not directing his route? I realise that unlike him I still see myself as a victim. His attitude helps me become aware of the power of choice. I decide to try on my survivor suit.” (Reinventing Emma, p. 165)

So, in that moment I chose to drop the victim mentality. I saw that I was more than my disability and needed to shift my focus onto my strengths, achievements and educate, empower and encourage others.

I rewrite the above list.

  • I survived a stroke when I was young.
  • I reinvented myself and relearnt to do everything again 
  • I am a yogi
  • I love to swim 
  • I have two beautiful Cavoodles- Gilbert & Molly 
  • I am an Auntie 
  • I chose to make life about my abilities not disabilities 
  • I wrote a book
  • I work part-time 
  • I  have founded a business 
  • I have travelled 
  • I have bought a home and live independently 

This is also a never-ending, continuous list. Choose to write your own!

 So much of the focus when we acquire a stroke is about what was taken and what we can no longer do! Consider what you choose to focus on! 

The theme for stroke week 2022 wascelebrating the precious moments that you or your loved one’s can continue to enjoy during and after your recovery.’

Focussing on one’s acquired deficits or what’s difficult or challenging about a task doesn’t make it any easier.

How can you make and elicit those precious memories?

Stroke is preventable but for those in the aftermath, let’s choose to zone into our many abilities and achievements!