So what are my 'tips', if you like, about overcoming brainstem stroke/locked-in syndrome at 17? Well, I don't really have an explicit ones but I did have certain 'motivations'. First let me walk you through my immediate thoughts then I'll give you some tips that helped me.
- 'I'm 17. I can't be stuck locked-in like this.' I'm young. I'm meant to be doing 'young things', not sat on a stroke ward with lots of 60 year-olds. I should be preparing to go to university like all my friends.
- My family have to go to work, they can't become my full-time carers.' Family was a huge motivation for me. I didn't want their lives to change as much as mine. I wanted them to stay 'normal', so go to work etc as they always have done. Plus I didn't want them to suffer financially and also health-wise in order to wait on me hand and foot.
- 'I want my dignity back.' At 17 you don't want someone suddenly having to wash you, wipe your bottom for you or wipe up your dribbling mouth. I was going to shower myself again one way or another. I had no dignity, my body had become a view for nearly everyone, including my mum and sister. Not cool.
- 'People won't be friends with me if I look like this.' This one may seem harsh to you-you could even go as far as saying that I sort of bullied myself into getting better by thinking this one.
- But it is true to an extent.
People only talked 'at' me as I couldn't converse back. Topics of conversation had to be established early, I had laminated cue cards to help. But I wanted to be able to talk freely about anything that I wanted. I would miss those little gossip sessions I used to have with friends. I would no longer be an active part of conversation, rather an observer.
Even now I find it very hard to make new friends because I look a certain way. You can see it ticking along in people's heads. First, they stare. They look you up and down. Secondly, when they see that you've noticed them staring, they give you the 'pity smile'- a small smile with a look of sorry in their eyes. I'm so used to it now that I don't take offence. In some ways it's actually quite amusing.
Also my speech is another factor. As soon as I open my mouth everything changes.
When my right index finger had come back, it was game on. I texted with it, I began to open post that my mum brought in, with it. And then my thumb returned. Then my other fingers. Then my arm.
My right toes started moving then. My knee could bend a little. After much practice and keeping it moving it all returned. It was like my brain had suddenly sent one giant signal down my right side and unlocked it all.
Next was my left side. It took a little longer but it still returned, just not as perfect as my right.
So my tips for anyone suffering from recent locked-in syndrome or loved ones that are:
- DO NOT stop. Once you get a little movement back, even if it's just a twitch or only one finger, MOVE IT. The key to unlocking something is to always keep it moving. Make up an exercise to keep it working if you have to. I texted my friends back to make use of my right finger.
- NEVER 'ACCEPT'. When my parents were told I'd never walk or talk again, I didn't listen. 1 and a 1/2 months after that little prediction, I took my first steps. YOU shouldn't ever doubt yourself or accept a generalisation. That is not YOU. YOU know your own body better than anyone.
- PUSH YOURSELF. So your physiotherapist said to do 10 repetitions of that exercise. What about if you did 15? Or 20? Go just a bit more or go until fatigue hits. YOU can do it. You've done it for 10 reps already so go for 5 more.
- LISTEN TO YOUR 'INNER VOICE'. YOU are the only person that you should listen to. YOU are the only person that can pass judgement, motivate or criticism.
Ask yourself, do you want your body back?
(The answer should be yes!!!)
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