ALS, CIDP & Raising Awareness or: Why I didn’t do the ice bucket challenge

There has been a trend appearing on social media recently.  Campaigns to “raise awareness” of a medical conditions which, theoretically, we haven’t heard of by doing something out of the ordinary.  The most recent, the ice bucket challenge, is to raise awareness for ALS or “Amyotrophic lateral sclerosis”, a condition which, unsurprisingly I hadn’t heard of.  A quick google search and a Wikipedia link later and it’s turned into something I have heard of: Motor neurone disease (MND), sometimes (for my American friends) called Lou Gehrig’s disease. 

ALS sounds genuinely awful.  It is characterised by muscle spasticity, rapidly progressive weakness due to muscle atrophy, difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea).  Thanks Wikipedia!

As ALS progresses is almost always causes death within three to five years, usually of lung failure.  If this sounds vaguely familiar it might be because it’s what put Stephen Hawking in his wheelchair.

I’ve heard quite a lot about motor neurone disease as my wife was diagnosed with something similar in 2010.  The condition is called CIDP or Chronic Inflammatory Demyelinating Polyneuropath which, if nothing else, years of practice has allowed me to write down without any spelling errors, despite what Microsoft Word’s wiggly red lines might think.  The conditions are often misdiagnosed as each other, though MND is much worse, most specifically because CIDP doesn’t usually kill you.  I won’t go into the details of what CIDP did to my wife, or us as a couple, as it isn’t my story to tell, but I will say it was pretty awful.  We cried a lot.  Feel free to google it if you want to know more.  What we do know is that, eventually, it will relapse and I don’t think there’s a day that thought doesn’t terrify either of us. 

The first major campaign I became aware of was the “no makeup selfie” for…. Something.  I think it was cancer?  It was only women doing it so it was probably breast cancer.  Definitely something I’d heard of but six months on I really can’t remember.  I think that says a lot about awareness campaigns.

We’ve also had a campaign to raise awareness of depression.  A horrible condition that claimed the life of Robin Williams, as well as millions of others.  I think this might be the only one I can really support.  It doesn’t require any sort of action and awareness, real awareness, could actually help the people suffering from it.  Understanding the signs could give you the chance to help someone with it (I guarantee you know at least one person hiding the fact they are suffering from it right now).  Raising awareness also works for conditions like strokes: Being aware of the acronym FAST (Face.  Arms.  Speech.  Time) could genuinely save someone’s life. 

A bit of history:

The ice bucket challenge started without the fundraising bit attached, just a dare.  Then it turned into “donate $100 to ALS or do the ice bucket challenge” then it became “do the ice bucket challenge and raise awareness!” It was a ‘do-it-or-else’ challenge because on its own, raising awareness achieves nothing.  Knowing that people are dying of this horrific disease isn’t curing them any more than pouring water on our heads.  What is going to cure these people is time and money.  You can donate via any method you choose but the first I came across was to text “ICED55 £5” (or any other amount) to 70070.  I’ve seen a lot of people pouring water on themselves this week.  Some of them have mentioned ALS, some haven’t.  I’m not sure whether they’ve donated or not.  I hope they have.

As you’ve probably guessed by now, I was nominated for the ice bucket challenge.  And I'm not doing it.  I can't stress enough that this isn't bashing the people who have done it.  But I don’t think you’d donate money because I wasted some water throwing it over my head, and I think I can achieve its awareness goal, however shaky it is, through words.  If you’re reading this I’ve done my job.  But I hope that the videos or this blog will get you to donate to this cause because in six months time you won’t remember what ALS is or why people were tipping water over themselves, so the money would be a real boon to people working tirelessly to find a cure.  But I also hope that afterwards you give to CIDP.  Or cancer.  Or hurricane relief.  I hope you give some money to someone in need because it’s the right thing to do.  We should be givers by nature, because people are suffering all over the world for a thousand different reasons.  We should give because people are being born into poverty.  Because natural disasters are happening all the time.  Because some people are just unlucky.  But we probably won’t.  We’ll go about our lives and forget and focus on our own problems and the problems of those around us, and we’ll do this because we don’t have the time or the money to be made aware of every tragedy that befalls people.  Our empathy can only stretch so far, and that’s a good thing, because if we truly understood all the horrors happening to everyone all the time, we’d go insane.  So give some money, feel good about yourself, and try and forget the harsh reality around us. 

At least until Beyonce covers herself in jam for spina bifida or Big Bang Theory makes another joke about Hawkings voicebox.

This week's postbag

So… I wasn’t expecting to use this blog again.  I had something specific I wanted to get off my chest, I got it off my chest, I was done.  But then something happened.  Something… wonderous.

On Friday I received a note in the post to my place of work letting me know a letter had been sent to me without the correct postage and I needed to pay the difference, plus £1 costs.  Assuming, it was work related (as unpaid things usually are) I went to the post office to pay the extra and collect it. 

It was addressed to me.  Not the company I work for, not “The Manager” and on the envelope I am described as a “Very Helpful Assistant”.  This is someone who has met (and presumably talked to) me.  Assuming it was going to be a complimentary letter of some kind, and needing the adoration of others to make my life complete, I paid the £1.46 postage cost and gratefully took my letter.  

Things worth noting at this point:

·         It’s addressed to me personally

·         I’m described as a “very helpful assistant”

·         There is only 11p worth of postage on it and as such it’s cost me £1.46 to collect.

Nothing costs 11p to post.  That should have been my first clue something wasn’t right.  Someone had intentionally (or, giving some leeway, accidentally) put the wrong postage on the envelope, forcing me to go down and pay to receive it.  Someone had taken time with this. 

Inside, I found this:

Honestly I’m at a loss of where to begin.  Is it supposed to be informative?  Is it bullying?  Is it random chance?  I’m just… lost.  It’s beautiful, I can say that much.  I tried googling everything I could think of, but I couldn’t find any trace of this image on the internet.  I doubt someone made it specifically for me (it’s printed out), but it makes me feel special that I’m not just getting some cheap internet knock-off propaganda.

Unsure where to begin, I suppose the best idea is to address its two main sections.  Firstly 

Absolutely true.  Genesis 1:27 teaches us that on the sixth day of creation, after creating the animals and the plants and the sun and the moon and all that other good stuff God said “Let us creates mankind in our own image.”  So it absolutely does teach us that.  Glad my £1.46 got me something factually accurate.  We’ll skip over the fact that God must have been talking to someone so there’s probably a little non-God thrown into mankind for good measure.  Maybe if we could prove he was talking to some chimps it would explain everything.  Then in Genesis 2:7 God, for some inexplicable reason, travels back in time a couple of days to before he created the plants and the rain and all the good stuff, and creates mankind all over again.  For a second time.  Little weird, but they are right that the Bible definitely takes great pains to teach us God created mankind.  His time travelling antics also predate The Time Machine by almost 8000 years.  Take that H.G. Wells!

Things get a little less clear with their second point though:

I’m guessing they don’t mean a close relative.  They’re not implying my son or my father is a chimp.  So I figure the question they’re really asking is could this chimp be a genetic relative of the human race?  To which the answer is a resounding yes.  I mean, look at him, he’s dapper gentleman, cutting a dashing figure in his suit and tie!  Not being able to see his right hand I’m assuming he’s holding some kind of briefcase containing important business documents for the day.  That guy could absolutely be my genetic relative and I would hope he remembers that before his ponzi scheme collapses, he loses his fortune and flees to a non-extradition country.   

My guess is they’re not trying to make that point though.  I assume they’re trying to disprove evolution, but the mistake they’ve made is picking our closest relative.  They’d be better picking something a bit more obscure.  I’ve taken the liberty of googling a few alternative options:

Maybe the real mistake is putting them in clothes. 

Or even just:

Any of these pictures would make their point better.  I mean isn’t it ludicrous that, millions of years ago, we shared a common ancestor with grass? 

Chimps seems a little more believable now doesn’t it?

I’m not really sure what to do with my letter.  More than anything I want to know who sent it so I can talk to them.  To let them know that it failed in whatever it was meant to achieve (Unless it's purpose was to provoke this blog, in which case, you're welcome).  

It fails as a piece of intelligent design propaganda (if that is what it’s intended to be) and also fails as one for evolution.  It failed to engage me in its message or sway my feelings at all, and if Marshall McLuhan is correct and the medium is the message, it’s peculiar hand-made aesthetic failed too.

I think the worst thing is, if they’d spoken to me instead of wasting Royal Mail’s time and my money, I could (and would) have helped them form a more coherent argument for their cause.  Evolution doesn’t give all the answers, there are some things we really don't understand yet, but a poorly coloured chimp and a bible verse isn’t the way to argue against it (there's a case to be made that cutting and pasting from google doesn't do much good either).  If nothing else I could have directed them to a better chimp picture:

As last time, I wanted to finish on a West Wing quote.  Because if there’s anything a blog like this needs, it’s a hook for the readers, so West Wing quotes it is.  But the one I liked most doesn’t quite fit, so I’m going to skew my topic somewhat, and bring it back to my last blog’s topic of education.  

Noah’s Ark Zoo Farm in Bristol is a creationist zoo which has achieved the incredible double whammy of “undermining education of both intelligent design and religion” (I know this because Wikipedia told me so).  Schools actually take their children to this place.  It’s too far away for my son to go there, but other people’s children could be sent under the mistaken belief that it’s somehow educational.  I would like this to not happen, and the best way to make that a reality is to keep the schools informed:

https://www.assemblywales.org/gethome/e-petitions/epetition-list-of-signatories.htm?pet_id=1020

And now, as you’ve all been waiting for, and in the words of President-Elect Santos:

"I think it would be fairly difficult to teach geology, anthropology and zoology without evolution... Intelligent Design is not a scientific theory. It's a religious belief and our constitution does not allow for the teaching of religion in our public schools... Evolution is not perfect, It doesn't answer every question but it is based on scientific facts. Facts that can be predicted, tested and proven. Intelligent Design asks theological questions... can't we agree that the inclusion of non-scientific explanations into the science curriculum of our schools misrepresents the nature of science and therefore compromises the central purpose of our public education which is the preparation of a scientifically literate work force?"  

A scientifically literate workforce.  Every father’s dream.

Collective Worship

My son turned three in February and so last week was his first week in school. He is ready to explode with joy.  Spending time with other children, playing & learning, are things he is beyond excited about. 

My first day taking him, he ran into the classroom almost forgetting I was there and headed straight for their play-castle.  He climbed into the turret to survey his classroom kingdom with a giant grin on his face.  This boy loves school.  It was a bit of a surprise then, when he was immediately joined by a little girl, puppy dog eyes welling up as she declared “I want my Mammy!”.

“This is my Daddy!” Affirms my son.  “He’s going now.”

All of which is great.  I can’t wait to hear about what he’s done all day, and the fact that he’s not only excited to play, but excited to learn, fills me with an immense sense of pride.  Education is the most important gift we give to our children.  Unfortunately there is another part of my brain which is panicking.  And it’s not because my little boy is growing up, or I’m worried he’ll pick up bad habits or any of the usual parent fears about sending their kids into education.  There are no two words right now which are causing me more doubt, confusion and dread than “collective worship”. 

My own experience with religion is pretty standard, my upbringing involved singing hymns in school, prayers in assembly, nativity plays...  I've read the bible (some parts more often than others), and while I never had religion of any sort thrust down my throat, there was just an assumption that there was a God.  I questioned it more and more as I grew older, at one point switching from theist to atheist on almost a weekly basis, before finally having my moment of realisation as a teenager, in a Waterstone's, whilst on holiday with my Mum.  I don’t remember why, but I know I was bored and I was waiting for my family to pay for the books they were buying.  As I waited I picked up a book on ethics to leaf through and there was a sentence in there that read “Christians believe morality to be passed down from a God in Heaven”….  And I realised, quite angrily at the time, that this was utter nonsense.  Just absolute rubbish.  Clearly the whole thing, for whatever reason, was a complete lie. 

I have, in the past, described myself as “a hardcore atheist”, thinking it was important for people to stop deluding themselves, and realise the simple truth that there is no God.  For me, it became like saying you believe in leprechauns.  And how can you ever put your trust in another person after you find out they believe in leprechauns? Or, even worse, that the decisions made by those leprechauns influence our daily lives?

Which is all very well in theory, but it doesn’t work in practice.  I know lovely, trustworthy, intelligent people who believe in God and while I cannot fathom why or how they can believe it, I accept they do and, aside from the occasional sarcastic comment, it doesn’t change my relationship them one way or the other.

My son’s school practices “collective worship” which should, in theory, be non-denominational.  My child’s teachers will be telling him, however passively, that there is a God, and that will almost certainly be a Judeo-Christian God. 

I am paying taxes to have people lie to my son. 

Before you start to question it, I am not against the idea of him having religion.  I will not, as much as is possible, impose my views on him.  He will not be an atheist child but, as Richard Dawkins would put it, a child of atheist parents.  If, when he’s older, having sat and thought about it and come to an informed decision, he decided he wants to become a Jehovah’s Witness?  Good for him.  I’ll disagree with him, but at least he’s thought about it and made the decision himself.  The same goes for anything.  If, when he’s old enough, he wants to vote UKIP I’ll argue with him until I’m blue in the face, but I’d still give him a lift to the polling station. But it would upset me (and every other parent worth anything) if I found out his school had enforced talking to Nigel Farrage on a weekly basis.  And I’m struggling to justify to myself allowing him to be put into that situation.

So what are the options? 
Option 1 is to just let them get on with it.  Even if he does end up singing hymns or having to say the lords prayer once in a while, he's only going to believe it as much as he believes Doctor Who is real, or Santa Claus, and like all the lies we tell our children he will grow to realise there is less truth in them than there may seem.  But that feels wrong.  When we tell our children the fun lies (the Easter bunny being the latest one) we do it almost as a game, and in full knowledge that we are doing it.  It is a shared secret amongst adults that these things are not true, a world-wide promise to maintain our kids' sense of wonder, and woe betide anyone who would dare reveal the truth.  We do this with full knowledge that, given time, our children will grow to question these things and eventually join in the game for the benefit of their younger counterparts.  But that's not the point of "collective worship".  It doesn't exist to promote that sense of wonder, it isn't a game, it exists because people honesty, passionately, believe these things to be true and want to indoctrinate these ideas to children at the earliest opportunity.  It is not a lie I can join in on and, if asked, would have to explain that I don't believe in it.  At which point I am either telling him his teachers are misinformed or are liars.  While I'd like him to grow up able to question the things his teachers (and friends, and parents) tell him, I don't think forcing a three year old into debating religion with his teachers in the best start for his school career.

Our only other option is to withdraw him from these events. But that's unfair.  He wouldn't want to be excluded, it would teach him (and the other kids) that he is different and would ultimately still lead to conversations he's not old enough to have:

"Daddy why do I have to leave assembly?"

"Because some people believe an incorporeal space giant made the world and everything in it and they want to talk to him and ask him favours by singing songs about his magical half human, half space giant zombie child.  But Daddy doesn't believe in the space giant, and thinks this is too big a concept for people so young, so doesn't want you taking part until you're old enough to understand what you're saying"

"But I like singing!"




It's not going to work.  So obviously we go with option one, but I'm not happy about it and am no closer to being happy about it than when I started writing this blog.  Schools should teach our children to question things.  They should teach our kids that some people believe things which may or may not be true, and educate them to make their own decisions on them.  If a teacher held a séance in school there would be outcry and that teacher would be fired.  If schools as a whole started telling children which way to vote there would be an all-party commission within the day. But somehow teaching them about a vengeful magic creator is fine.


I'm going to end on a quote from the great Sam Seaborne which, while used in a completely different context, sums up my feelings better than my own ramblings ever could:

"Education is the silver bullet. Education is everything. We don't need little changes. We need gigantic monumental changes. Schools should be palaces. The competition for the best teachers should be fierce. They should be getting six-figure salaries. Schools should be incredibly expensive for government and absolutely free of charge to its citizens, just like national defence. That's my position. I just haven't figured out how to do it yet.”