Freedom by definition is: the power or right to think, speak or act as one wants. The state of not being imprisoned or enslaved.
To sum up it's bloody fantastic!
I love being able to get up, get ready and go out on my own. I walk along the pathway to my car, get in and then I'm off. Gone are the days when I would have to wait for my mum to finish work and come shopping with me. I am free to do what I want, WHEN I want.
My little car Penny, (I'm probably the biggest Big Bang Theory fan so it's named after Penny in the programme and it's a girl car because it's all pretty and blue) plays a huge part, since learning to drive my independence has expanded. I love just getting up in the morning and driving to college like it's nothing major. It's just what I do.
On friday I kinda got a little emotional driving on my way to physiotherapy. I just felt so in control saying bye to both my parents, getting in my car and driving all the way to Markyate (a journey quite long and one I never thought my parents would let me do on my own!!). I was 'driving' on cloud nine- I felt extremely lucky to have recovered well from a brainstem stroke, firstly. But also the fact that I stuck with learning to drive, passed first time and managed to get a car of my own. Yes, 'normal' people do it all the time but for a stroke survivor who was told she'd never walk or talk again, is pretty big!
Also, physically I'm more confident. Although when I'm shopping, I have a trolley to hold onto but so? I'm walking by myself. I walk all round the huge supermarket, I even go upstairs if I need to. I don't get fatigued as much now, my leg muscles are big enough to carry me round the shop without me having to stop to 'catch my breath'.
And as we probably all know, trolleys have a mind of their own, there always seems to be one with a wobbly wheel... but I'm testing my balance and coordination- so technically it's part of this whole rehabilitation process.
And for anyone that wants to go out on their own but is a little nervous or worried...
- They will help you.
If, like me, you have a weak arm and cannot pack your shopping, they will pack for you. The first time I went to a till and paid I imagined myself having to struggle with it all. But no. All the cashiers that I've been to will do it for you. And they're happy to help out.
- Walk around like you belong.
You have just as much right as anyone else to be shopping in that supermarket. People will look at you and they may step out of your way quicker than anyone else because they assume you can't push a trolley, but it's to be expected really. Just get on with your shopping, don't focus on anyone, do your thing.
Independence, freedom. It's a huge thing. After nearly 4 years I can finally do things on my own again. So it does take time. But believe me, there is nothing greater than when you can finally take that little step on your own. Remember, what may seem small to others, is a HUGE accomplishment for you. Let no-one dull your shine.
Saturday, 12 March 2016
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.
1) '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.
2) '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.
3) '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.
4) '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:
1) 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.
2) 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.
3) 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.
4) 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 criticise.
Ask yourself, do you want your body back?
(The answer should be yes!!!)