The following post was written by Jenny McAllister, who, at the age of 21, suffered a brain stem haemorrhage that has changed her life ever since.
Fourteen years ago, at the age 21, I suffered a massive brain stem haemorrhage that changed my life forever.
In an instant, I went from a fit and healthy young woman to someone who was on life support fighting for her life.
Although my injury didn’t affect my memory or intellect, it severely affected all my motor skills, leaving me with a physical disability. I was in hospital for 18 months whilst my body tried to recover, and by the end of 18 months I was more than ready to return home and to ‘normal life’.
But the homecoming was not how I envisioned it to be.
Instead of feeling happy and settled, I felt thrown into a world I no longer knew or recognised, and one I definitely didn’t feel a part of.
No one prepares you for the transition.
For the reality of life in the real world with a severe disability.
It’s not just the physical aspects of HOW will my wheelchair fit in the house? Or how will I make it up 13 stairs to my bedroom? It was also the mental and emotional impact of a new life in unknown territory. I had been living in a hospital bubble, feeling safe and secure. I knew my routine and my way around the Stroke Ward like the back of my hand. This was my safety net, my comfort zone. Leaving to venture into the real world filled me with a huge sense of dread and vulnerability. All of a sudden, I had to deal with many different thoughts, feelings and emotions.
Whilst everything at home looked and even smelt the same, nothing felt the same. It brought back so many memories of the life I once had. The life I had lost and the life I now had to figure out. I felt such a mixture of sadness, anger and grief and I had no idea how I would move forward.
I would often sit silently in my bedroom and feel such loss. This was the room where I used to get dressed for work, do my hair and makeup with my friends ready for nights out. My bedroom, which used to be my sanctuary, was just another room filled with multiple hospital machines and equipment. None of which felt like it really belonged and yet it was now part of my life.
And it wasn’t just myself I had to consider.
Mum and dad and my two brothers were living at home and everything I did or didn’t do affected them. It was no longer just about me.
My mum and dad became my full-time carers, and my brothers became my support aids. This meant taking me to appointments, helping me with my rehab and trying to help me ‘fit’ back in to everyday life.
This support system is what kept me grounded, super focused, stubbornly determined and above all, positive. As my mum always said:
‘You may not be living the life you thought you would, but we will make sure you live the best life you can’.
This is what my family did and continue to do 14 years on.
They have become my ‘behind the scenes Crew’. They support me, mentor me, give me advice and guidance when needed, but also know when to ‘step back’ and to just let me take control and find my own way.
It took me a really long time to get into a good routine and to feel comfortable being at home. But now I wouldn’t have it any other way.
I feel extremely lucky and grateful every day I get to wake up in my own bed without being woken up by a hospital buzzer or nurses turning the lights on at 5am.
I am able to shower without having to wait for the other 30 patients on the ward who want to get in first. I am able to pick and choose what clothes I want to wear and to do my own hair without being dressed by the nurses in clothes that don’t match or a hair style that’s from the 80’s. I am able to eat food that not only looks nice but is edible.
It’s the little things, the small, simple moments that really do make the biggest difference. Which in turn reminds us all that there really is no place like home.
Life is full of twists and turns. As your needs change, Kira Community Services will adapt and evolve our support services and solutions to suit you, with you. Contact us today to discuss how we can help you.