Portrait: Johnny
My name’s Johnny, and I suffered a life-threatening brainstem bleed/pontine hemorrhage back in the summer of 2021. After, I was put in an induced coma for two weeks with a not-so-great prognosis of survival. My family and children were told to expect the worst: that I may not wake and if I was to come around, I would be in a vegetative state for the rest of my life with just eye movement and slight face or oral movement!
Waking up but being trapped in my body
I woke from the coma locked-in; I stayed like this for three weeks.
Luckily, I started to regain some movement, firstly in my head. Instead of using eye movements and looking up for no and down for yes, I found myself communicating by nodding and shaking my head.
I still couldn't move my limbs as I was bilateral. On my one weak side, I couldn't move any of my limbs. Waking up with complete paralysis didn't scare me, as the two weeks in the coma was the most realistic dream that I knew I'd suffered a stroke, and in my mind, I knew I'd recover as I'd seen it happen to other people.
Four to five weeks after the stroke, what scared me was when the physios sat me up on the edge of the hospital bed, let go of me and I had no control of my body. I slumped, left, right, and backwards. I was like a newborn baby with not an ounce of core strength or control. This was extremely scary for me. I mouthed what's happening!?
A long road to recovery
It's taken three years so far and I'm a long way off to where I would like to be. I've had to come back from having zero movement and not being able to say a word. At first, I was using an alphabet board, followed by writing, then I eventually learnt to speak once more. Laying there one day locked in my body, I was very fortunate to have a continuous spasm in my right arm. It was bending at the elbow up and down, up and down. This continued until I regained a bit more movement. Enough that I could write on a whiteboard.
At the time of writing this, I need to try and regain more strength in my body, and more balance. It will come one day, with more work and determination.
In the meantime, I do what I can, and that's all I can do. I do what I can, but I never give up hope and keep my mind strong.
Writing helped my mindset. It was self-therapy in a way. I wrote the whole experience from the night it happened to going through rehab, and of how I felt in my mind. I wrote it on my phone using my good hand. I'm making it into a book. It will be in two parts. The first part ends with me leaving rehab in the wheelchair. I'm living part two, that's written about me getting to my feet. It will end with me walking, because I will walk again.
My advice to others
It's all about having optimism. Be optimistic about your recovery and keep your mind positive!