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.
No comments:
Post a Comment