On Perspective

Today I got a bit of grief for not understanding a joke.
It goes like this:

So the main thing is that I have never heard this myth that people having olfactory hallucinations during strokes smell burned toast.
It really helps if you've heard the story the joke is dependent on. But I still don't find it 'funny' unless you factor in that burned toast in the ocean is just soggy bread. And that's not exactly hilarious either.

Perspective is a huge thing too and strokes aren't especially funny. Illnesses, diseases, medical conditions in general...problematic. It's one thing to watch a disabled person make jokes about their own condition - people are allowed to poke fun at themselves, it's when people poke fun at others it starts to get difficult.

So, having seen this do the I retweeted it with the following: 

I've seen this one do the rounds several times and it's no good

I have to ask... WHY IS IT (allegedly) FUNNY?

Probably just me being *sensitive*

but I don't find anything about strokes funny.

The @thelifeofsharks twitter account retweeted me with the (partial) comment: 

We’re sorry you don’t understand the joke.

We’re not for everyone.

Wow, 'I'm sorry you don't get the joke' is such a non-explanation for why you're 'joking' about a very serious issue. 
Another tweeter replied: 

i found it funny, and ive had strokes before. it's set up well,

and uses the toast thing effectively to make a joke

that even i can laugh at

Look, I'm happy for you. I don't know what kind of strokes you had or why but I see from your bio that you're pretty young - maybe that has enabled you to make a good recovery or maybe you're just in a really good headspace to accept what happened to you because, again, perspective is a pretty important factor.

This, for example, is MY perspective.
When I was 6 years old my grandad had a stroke*. They didn't have MRIs or whatever in those days and there's no good way of defining different severities of stroke anyway. He lived another 16 years pretty much in one room like a prisoner in his own home. He had a poor quality of life; he died in 2000 aged 91 - of complications from the catheter he'd had to use because of the stroke.
His wife died less than 3 months later, also of stroke, but then she was 95.
Their youngest daughter, my mother, worked her ass of all those years to keep them in their own home - doing all their groceries & laundry, doing the middle-of-the-night call outs when he fell. My dad did all their gardening and DIY.
My mum had her stroke* on 16th April 2018 aged 73. She has been affected far worse than her father was - he could stay in his own home with assistance, meals on wheels, carers in twice a day... My mum has to have someone with her 24/7 which is me (with a little help from my daughters & dad - when they're available).
See, this doesn't just wreck the life of the person it happens to. I had to give up my own life, my hopes & dreams to care her. And if that sounds callous I don't much care - I did not have a happy childhood and I never had a great relationship with either of my parents. I hadn't long graduated, my youngest kid was recently off to uni - I was finally gonna get my life back. Unfortunately, for both of us, I'm an only child and my mum's partner wasn't up to the job. So now I'm stuck at home being a domestic drudge on zero income living my worst nightmare. The things I have seen and done in the past year and a half...
*We're fairly sure both had subsequent strokes (I think they were confirmed at autopsy in my grandfather's case; my mother is terrified of all things medical so we've pretty much nursed her through the 'episodes')

So yeah, I'm glad that the stroke-survivor who responded that they found it funny is in a position to do so. But that's far from true for all. For many people the position is utterly devastating. You won't find my mum laughing about her funny incontinence or the fact she chokes when she eats or drinks or the million other shitty things she has to endure every damn day. I'm not laughing either, I cry myself to sleep most nights wondering what I did to deserve this karma.

Brain damage* is horrific however it happens but somehow I think it must be a little easier to accept if there's a terrible accident or something. The thing with a stroke is that there's not an outside cause, your body can just do it to itself. My mum was watching TV for heaven's sake! If she hadn't has a partner to phone and raise the alarm...well, she'd have ended up like Michael.
Michael lived down the road from us. Back in the spring his neighbour called his ex wife (my godmother) because she was concerned...he'd been dead a considerable time. I hope to God he dropped dead of a heart attack or something but he could've had a stroke and just lain there 'til he died of dehydration. Maybe there was a reason no one cared about him in life but it's a horrible way to imagine someone going.
*Only in the past couple of weeks did I become aware that there's also such a thing as a spinal stroke - so you can end up permanently and completely paralysed for no damn reason.

I'm certainly not gonna say I speak for any stroke survivor when I'm not one myself; I'm not even gonna claim to speak for any other person whose life has been affected by stroke. Maybe I am being an over sensitive snowflake but this is my reality.
For some people a stroke is little more than a TIA - a 24 hour scare. Some have more serious experiences that require a longer recovery time. Some people will never fully recover; some don't even get a partial recovery but remain seriously impaired as long as they live. Some will die. And they're all called stroke, regardless of whether you can live a fairly normal life, go back to work etc...or whether you're left catastrophically disabled. Lumping all stroke-survivors (and their loved-ones) into one category like that is just nuts when it's a ridiculously diverse set of circumstances.

• Dead within 28 days of stroke - 28%
• Dead within one year of stroke - 41%
• Dead within five years of stroke - 60%

Source: https://www.saebo.com/stroke-statistics/

• Around 2% of the UK population is a stroke survivor.
• Stroke is the UK's 4th biggest killer (1 person every 13 minutes) and the leading cause of acquired disability.
• 1 in 8 deaths worldwide is caused by stroke.

Source: https://www.stroke.org.uk/sites/default/files/state_of_the_nation_2017_final_1.pdf

I find the statistics pretty hard reading though:
About half get a brain scan WITHIN AN HOUR of arriving in hospital, almost 9 out of 10 patients have a brain scan within 12 hours. At 18 hours in they were still insisting it couldn't possibly be a stroke and finally agreed to do a scan 'just in case'.
In Scotland 8 out of 10 people are admitted to a stroke unit within 24 hours. We're in England, my mum waited a week for a bed to become available.
And then the shit about therapies and rehabilitation - everything stopped dead as soon as she was discharged. No physio, no speech therapy, nothing.

So yeah, forgive me if I don't find it funny.

Cookie Cutter Culture

This week I read a very disturbing article about Cookie Cutter Culture (hereafter refered to as CCC) - by which I mean the one-size-fits-all approach adopted through so many aspects of life.

The article dealt with complaints from charities that they are losing many of their best volunteers to the British Government's Welfare-To-Work programme.

"What's wrong with that?!" I hear you cry. "If someone can volunteer they can get a job!"

Well, that's the problem. Welfare-To-Work isn't about employment, it's about crunching numbers and ticking boxes.

From my own experience I know that the staff at the JobCentre aren't interested in helping you, or getting you into worthwhile employment. They're not interested in your qualifications or skills or aptitude. They want you to take any job that means they can tick you off their list, no matter how unsuitable it is. If you're back in a month cos it didn't work out they don't care.

I was stressed out of my mind dealing with the JobCentre. My "advisor" was just a bully to whom I was another worthless dole-scrounger. I had genuine concerns about returning to work which were well founded. Their "help" was non-existent and fortunately I found a job without their interferance...although they still took credit for it!

So back to the point...these charity volunteers are often well educated people, university graduates even. Often they are volunteering to get experience in their chosen sector, waiting for a window of opportunity to allow them to get their foot on the ladder.

The article I refer to drew on cases of such people who, under Welfare-To-Work, were unable to continue volunteering as they were instead made to take degrading classes in 'how to write a CV' or forced to take minimum wage dead-end jobs like shelf-stacking. Who does this help? These people need plenty of additional financial support to make ends meet - it's hardly being off the dole! These people aren't improving their employment prospects, they're not using their potential. Also, these are low IQ jobs that are being denied to genuinely low IQ job seekers!

The Welfare-To-Work programme is based on one very flawed system - not the benefits system itself but CCC. Everyone is expected to fit a certain stereotype and the solution ONLY fits to them. They expect people on benefits to be lazy and ill educated and they have no flexibility for anyone who doesn't fit that criteria.

Imagine being a university graduate who is being ordered to take a class aimed at the barely literate. Being put on a 'work-preparedness' course - whatever that is supposed to mean - which ends in the chaos of a bunch of heavily tattooed ex-cons discussing bank robbery! I kid thee not. It's insane!

CCC is infecting every part of our world. Such as schools that don't encourage bright children but who hold them back - segregated into classes by their age not ability. Such as doctors hounding or criticising patients who don't want to be prodded and poked and tested for the zillion and one things that could be wrong with them but probably aren't, or for refusing to take the "precautionary" meds that have a list of side effects as long as your arm...

Would it really be so difficult to match people to available jobs by aptitude and credentials? Or to offer them the back-to-work help most suited to their needs? Or to move a smart child up a class or two at school? Or to lay off the "patient" who feels fine and doesn't want to see the doctor (and lets face it, if YOU want to see the doctor it's a whole different ball game)?

Personally I shouldn't have thought any of these things would be so very hard.

At the end of the day it is your life and your choices but I beg of you to at least consider, where you come up against CCC COMPLAIN! REBEL! REFUSE TO CONFORM!