Wednesday, March 29, 2006

Different Strokes

Today is something of a milestone; after talking about and dancing around the subject for a couple of weeks the Painter is finally back at work. He has sold another painting and it is the start (well, almost) of a new financial year.

It is difficult to imagine all of this, remembering him so lifeless in the hospital back in September, contemplating the recouperation he had already made and the one still to come.

In those dark days it was friends here and family that sustained me. Help was also found in the uplifting stories of young stroke survivors on the Different Strokes website.

I have contacted Laura and include her story below with her permission.

My thanks go to her for her permission to reproduce her story, and especially to the wonderful team at Mount Gould Stroke Rehabilitation Unit in Plymouth who have helped this day happen.

Laura Wood

After reading through other survivors' stories on Different Strokes, I truly just realised that I am not the only one! I suffered my stroke in the August of 2005, a few months after my seventeenth birthday. Ever since it feels like what should be the happiest year of my life - in my last year of school before uni - has been a nightmare. It is reassuring to see that others have been there, done that, and lived to tell the tale. So here's mine, as I distinctly remember it:

I felt completely fine on the day, I've never been to hospital in my life and was fit and healthy and had no reason for concern! As one of those energetic sorts while I was in the living room that afternoon I, as I usually do, flipped over and rolled off the side of the sofa onto the cushions. I lay there for a moment, watching a bit of BBC, and then when I stood up I felt a sudden agonising ache down the right hand side of my body. I stood there for a while, slightly swaying; off balance and uncoordinated. My frame of mind suddenly and completely switched, it was as if it had separated into two - one half was telling me I was fine and that it was just a weird occurrence, the other urging me to 'just go to sleep'.

In a kind of trance I haphazardly threw myself into my room and onto the bed. The other side of my mind came into gear again telling me 'Laura that's weird, you usually put on the radio' but my other side overpowered it, 'no no just go to sleep'. Obeying the latter command would have been a whole lot easier had the left hand side of my head not being pounding, and the right hand side of my body excruciatingly aching and numb. Instead I opted to read. It was a book I had previously read so finding that I couldn't make sense of the words or even hold the book in both hands alerted me that something more than definitely was wrong!

The other side of my mind kicked in and reiterated its point that I should just endeavour the pain and sleep. I managed to uncomfortably sleep for around 45 minutes before I was called for tea. When I awoke I had quite forgotten the other 'weird' occurrences, and when I stood up I struggled to gain balance and felt completely dazed and severely lacked coordination - however, I put it down to merely getting up too fast! This 'weirdness' continued when I found I could not grasp the door handle or coordinate my right-hand side at all. 'That's weird' I thought. I somehow drunkenly went to the kitchen where I sat, and shook my head - still feeling dazed and trying to rid myself of the feeling. I reached out for my glass with my operating left hand and took a gulp, only to find it spilled out the right hand side of my mouth. My mum turned round at this point and laughed "Laura what are you doing?!" as she chucked me a tea towel, "nothing" I thought as I dabbed my face. But as I dabbed I laughed, somewhat uncontrollably, thinking 'god that's weird'. I continued in my plight to actually have a drink and took another gulp from my glass, only to find the same dribbling to happen again. At this my mum looked a little confused "are you okay? what have you been doing up stairs?", yet again I dabbed my face, but as I was doing so I started feeling stupid and started laughing nervously again, not quite understanding what was going on. Mum asked again what I was doing upstairs, and I had my reply clear in my head, my mind after all was completely focused - 'I was asleep' - but I just couldn't seem to coordinate anything out of my mind, like my speech. My laughing ceased as I began to realise that I could not speak. I started to cry, but I felt stupid doing so as I didn't understand why I couldn't speak, so I was still laughing. Mum asked what was wrong and I stopped my laughing immediately, instantly realising that this was no laughing matter!

Although I was completely clear headed, I felt as if I was completely mentally disabled. I couldn't coordinate my right-side limbs; I couldn't speak; I couldn't communicate, I couldn't remember any short term thoughts; I couldn't do anything. It was the most terrifying feeling knowing that my fully functioning body, which I had always taken for granted, was for no obvious reason breaking down and ceasing to function.

My parents took me to A&E in Elgin where I was seen to straight away. It all seemed very surreal as I lay there thinking - "what? A stroke?! That's what old people have!" I recall crying myself to sleep that night, not just because of my excruciatingly thumping headache, or because I'd not be able to go out that weekend, but because I knew from then that things were going to be different.

I refused to believe that my body was weak and from the following day onwards I convinced myself I was fine, when really all I wanted to do inside was curl up and cry. I was transferred hospitals and was carted from test, to test, to test, until consultants at Aberdeen Royal Infirmary eventually confirmed that I had indeed suffered a childhood stroke, and that it was because of a newly discovered hole in my heart, which I have had from birth. It was this hole that let a clot that was passing through my heart at the time to pop through and into the opposite atrium, which sent it to the brain. Apparently the chance of this ever happening is so tiny that I'd probably have had a far better chance of winning the lottery!

During my weeks in hospital I had convinced myself so deeply that I was fine. I didn't want to be 'The Ill One' that stays in bed while everyone else is back at school, or out having fun. I felt vulnerable and lonely, I just wanted to go back to normal - how things were before. I was in severe denial and locked up my true emotions in favour of a false 'fine, fit and healthy' persona.

Each day felt like one long slog. I tried to laugh along with everyone's jokes and pretend nothing happened but it was killing me on the inside. What made matters worse was that I had no one to speak to - my friends never even knew what a stroke was, never mind how to converse about one! This went on for months, each week I just told myself 'no no I'm fine, get on with it, there's people in the world worse off than you are' and ended up pushing myself too far and taking on more than I could handle (not that I'd have ever admitted that!). I was plagued with headaches, migraines and an insatiable tiredness, yet I was persistent in wanting to be respected for being brave rather than pitied for being ill. It eventually got to the stage where I was too proud of my self-belief to let my guard down and complain about my problems. But the reverse occurred and the tension, the pressure, the pain, and the months of wanting someone to talk to got the better of me, leading to stress and a lot of tears!

It has now been nearly 8 months since my stroke and everyday I am still filled with the fear of 'what if I have another stroke?', or if I have a slightly funny turn I will suddenly think 'oh no its happening again!' I have fears of it ever happening again, which is desperately unfair for a young seventeen year old to worry about, but I am obviously not your normal teenager anymore! Which is not a bad thing.

I am very fortunate to have been treated within three hours, otherwise I could - like many have - been left half paralysed or unable to speak or communicate. I had physio during my time in hospital for my right arm, and my use of speech improved naturally day by day. My short term memory came right back up to speed within a few weeks, and apart from those minor implications, only my isolation and migraine have proved problematic to me in the aftermath.

After seeing the cases of other survivors I now realise that I am not the only one, and I can get through this. I only wish Different Strokes was brought to my attention at the beginning. I have learned so much from only being involved a matter of weeks. I am now aware of how I tried to ignore the 'invisible side of stroke', and I can now make changes to help towards taking my life beyond being a stroke survivor. I am currently set to undergo another heart operation in a few weeks to fully close the hole in my heart. I underwent a procedure in December but this led to various complications, hopefully this time it will not only see to closing the hole but to the closing off a part of my life that I want to draw an end to. In September I am going to Edinburgh University to study Business where I intend to restart and look back on this past year on an experience that has made me stronger, despite taking me to my weakest.

I may have had a more fortunate recovery than others but I know now that it did not make mine a one to just forget about and neglect. I may have put my problems down to be uncomparable to other medical marvels of the world, but I do not recommend doing it! Embrace your problems and take advantage of those who are there to listen and help. Every recovery is different, every victim is different, every stroke is different - but all survivors are the same, in self belief and strength.

Thank You.


KW said...

Gosh. Thanks for including Laura's thought on strokes: an incredibly moving read. And very well done to the Painter on his new sale - excellent news. You're both in my thoughts.

Stegbeetle said...

Excellent news about The Painter, congats to him on the sale. May there be many more. It's about time things started to look up a bit for you two.
Hugs all round, I think and *raises glass* here's to you and yours!

She Weevil said...

Cheers Steggy - he came home with paint on his hands and probably on his clothes somewhere too. This used to be the bane of my life but who cares.

Mary said...

That is an extraordinary story.

Congratulations to you and The Painter for getting your lives back on track - and here's to more sales this year!

Badaunt said...

For some reason when I use IE I end up commenting as Mary, with a non-displaying profile page. When I try to sign on as BadAunt I get told I have cookies disabled and no Javascript, both of which are not true.

Weird. Did I start another blog and not remember doing it?

Oh, and ALSO... did I join Blogshares and not remember that either? I just discovered that I am there, and that you have performed a hostile takeover (!!!) - and assumed I must have joined at some time and forgotten. However, when I try to retrieve my password none of my email addresses comes up as listed there.

Could it be that I am losing my mind?

Also, since you are a member there, can you see which email address I (presumably) used there? I'm assuming that in a moment of procrastination at some point I listed my blog using some throwaway email address I have since forgotten, and then FORGOT ALL ABOUT IT. I am TOTALLY BAFFLED.

(But not just baffled. Massively entertained, too. You used a Yakuza artefact? HA! The next time I am uninspired I'll ask you to post for me, since you are a majority shareholder!)

She Weevil said...

Mary's Badaunt: I don't know about the cookies thing or javascript but suffice it to say there is something of a black art about all of this.

As for blogshares, you don't need to put your own blog on there anybody can nominate a blog you should be able to claim it - it shouldn't have been claimed by anyone else. I used to own shares in your and cheryl's blogs (amongst others) but I did recently get into a bit of a bidding war with Berlin Bear over yours - it was during the Olympics.
I might also have used an OED artefact on you at some stage.
I don't think you are losing your mind and don't be baffled; anyone who likes your blog is likely to buy shares in you - your other one's on there too, somewhere (presents @ tblog)

Badaunt said...

This is SUCH a relief to hear. Honestly I was thinking I was losing my memory. I couldn't remember ever visiting the page before, but ...? I wondered if I'd been doing stuff in my sleep!

I don't think anybody has claimed my blog (whatever that means, exactly.) I was trying to log in, thinking that I must have joined at some point, and couldn't. All is explained now - I couldn't log on because I hadn't joined!

Ally said...

I am so pleased that the Painter is back at work - it must be such a milestone for him (and for you) and so good to be creating again.

Thanks for posting Laura's story, too.

Cheryl said...

Thank you for a completely new understanding.