My life locked inside my body

By Tracey Gibb

I was 19 when I suffered a rare brain stem stroke that left me locked in my body, completely paralysed. 

My stroke was caused by an abscess on the pons, they are very rare and mine couldn't be surgically removed, this made treatment more difficult and isolating.

I had been ‘off my food’ for a few weeks, everything tasted off, and I was also having the most terrible migraines. I took myself to my local GP a few times, but was treated for my headaches rather than the catastrophic stroke that was heading my way.

My housemate at the time was unhappy with the way my GP was handling my symptoms, so he took me to his Doctor. 

I don't remember the drive to see his GP. Crossing the road I fell. The doctor took one look at me and gave me a letter to take to Emergency Department immediately. 

At hospital I was placed on a gurney. I kissed my boyfriend goodbye and told him that I loved him - that was it. I suffered a massive brain stem stroke. When the doctors came to see me I was unresponsive with my eyes unfocussed and locked towards the right.  

Afterwards nothing was ever the same. I was a 19 year old woman with dreams and plans for the future, but had no way to reach them. I could not speak, move, eat, bathe or toilet myself, I relied on others for everything – it was a nightmare.

For years after my stroke I hid myself away, I couldn’t stand the way I looked, my face was severely paralysed and I couldn’t move. I wasn’t coping and I didn’t think the world would either. 

Then my Nana rang me for my birthday, after hearing her voice and knowing she was losing her memory, I knew I had to see her. I could hear in her voice how much she wanted to hold me in her arms again and that’s what I needed too.

It wasn’t easy to get to my Nan, I live in Adelaide and she lives in Perth. The logistics of getting me interstate, paralysed and in a wheelchair was going to be a challenge. The flight required forklifts to get me on and off the planes, child sized wheelchairs to get me down the aeroplane isles and a team of people to hoist, pull and poke me into position – all very embarrassing, undignified and very public.

After years shut away, depressed, it was a baptism by fire!

I have learned a lot through the challenges that I have faced since my stroke. The world is not disability friendly and not all carers are made equal.  I have also learned that you can’t change your circumstances by staying quiet and living in the shadows. At some point the world will ask something of you and you’ll have to make a decision to own your future.

That is what I am doing.