Wednesday 24 February 2016

Who'd have thought..?

'Mr Sinfield, Bethany will not walk again. She probably will not talk and will always be fed via a feeding tube in her stomach.'

My dad even had to double check this prognosis with my speech therapist, 'will she really never be able to talk or eat again?'
'It's extremely unlikely. I'm sorry.'

I sometimes don't realise just how far I've come since September 2012 when that initial prognosis was made. Looking back it both scares and amazes me. To tell the truth, it scares me to think that I had that said about me, that I could have just stayed completely powerless, totally paralysed with only my eyes to communicate. Not knowing then how different my life would be if I'd remained locked-in.
It amazes me, of course it does. Firstly I survived. To put it bluntly, it was thought I would die that night in A&E. Secondly I pushed through, what I can only describe, as the most devastating, toughest, emotional experience in my life. Something I never thought I would have to go through, let alone go through at the tender age of 17.
And thirdly, I can walk. I can talk. I can eat normal food.

Two years after my stroke I decided to get my first tattoo. I had recently turned 18 and had always wanted to get one. So I got a quote on my upper back, 'Strength grows from weakness'. My dad comments that is very poignant. That quote made me realise that it's ok to be weak. The only way to become strong is by being weak.




Then I got a little butterfly. I had it in black as a symbol of the dark times that I've been in but also, the wings and the simple fact that they fly, symbolises my freedom. Freedom from locked-in syndrome, freedom from 10 months in hospital. Freedom from the darker times.


I'm planning my next one as I type; a hummingbird. Again the wings symbolise my freedom. The beauty of a hummingbird symbolises the person I am now beginning to transform into. As I've previously written, this year my confidence is coming back to me, my old friend finally returning. To me, that is beautiful. That is what I've since desired the most.

Wednesday 17 February 2016

Everything's changing

I always thought that 2016 would somehow be a better year than the past three. I don't want to jinx it though but so far, it's been pretty great.
My confidence has definitely grown (even my teachers at college have noticed a big improvement), my walking has gotten faster and the quality even better. Never would I have imagined I could say that 3 and a half years after my stroke.
And finally, after years of waiting, I got an answer about my speech. For 3 months I am going to try a palatal lift again (for the third time- fingers crossed!). For those that don't know, it's a prosthetic that fits along the roof of your mouth that extends all the way back to the soft palate to lift it up. The aim of this is to stop my nasality, so the air escaping from my nose. I've already tried one twice and both times ended badly- basically it just didn't work and created way more problems for me. The cleft team at Addenbrooke's know my reservations about it and are very aware that it may not work out again. So if not, they will operate.

Speaking of confidence, yesterday I went along with my neurophysiotherapist to her home visits of brain-injured patients.
To be honest, I was really nervous. Although I've met loads of new people over the past 3 and a half years and have had to talk with my 'new voice', I still get a little worried about how they'll respond.

I visited four incredibly lovely people and after the initial 'hello', settled in absolutely fine. Confidence boost number one.
I sat in their living rooms with their parents or wives and answered their questions they had about my stroke, my recovery and the knowledge I had gained about my experience. They loved meeting someone like me, having someone that truly knows what it's like and that's experienced exactly what they've experienced too and also knowing that it can/will get better.
Confidence boost number two.
Honestly, I felt so upset for one patient- she had met NOONE else that had had a stroke, let alone a brainstem stroke. She was incredibly isolated, never left the house. (WE NEED MORE AWARENESS!)
Her mum told me that meeting me and hearing my stories of recovery had given her and her daughter hope and kept commenting over and over how I had done so incredibly well.
Confidence boost number three.
What happened next will forever make me cry happy tears! I was walking out of the house when her mum shrieked with delight, 'Look, she's a walking miracle!'
Confidence boost number four.

Knowing that I can inspire people, give them hope and support through their recovery is something I truly and utterly love. It makes me cry (happy tears!) knowing that I can give people something to work towards and I can encourage them to achieve.

If I could meet every single stroke survivor across the world, I would! I love talking to people that know. Simple.
That's why I'd love to be a neuropsychologist or work with those who have a brain injury.

Happy days!

I hope the new year works out for you as well as it has for me so far, you all deserve it ;)