the gullible cynic

The Internet can be an amazing thing - especially if you have an illness like MS.

Most importantly, you can find somebody, somewhere who will have already written about any symptom in order to back up ANY half-baked theory you might come across in the course of your day!

Exhibit A
I've stopped having Cow's milk in my cereal, shifting to a Soya alternative (quite nice actually) after reading various things about a link between MS and Lactose Intolerance. But the thing that finally convinced me? Well, that was finding a web page (which I can't find now!) which said that the cheese-making process actually removed the lactose - so I can still eat cheese! Result!

I do actually feel quite a bit better, it has to be said - much less slovenly and my memory (for work stuff) seems to be better (still SHIT at home, mind) - but that could be due to any number of reasons:

• I genuinely love the autumn - Jumpers! Comfort food! Bright crisp mornings! Cardigans!!
• I've recently doubled my Vitamin D3 intake to 2,000 IU.
• I've walked into work for the first time in AGES on a couple of occasions in the last week - it was lovely (see first reason above).

So it could be the Soya or it could be... I dunno. Just good vibes?

I even recently picked up this article about Bacteria in soil having a link with MS - bizarre and I DID eat soil as a child...

When I go home to talk about this stuff, my wife just rolls her eyes - "oh, what have they decided this week?"

And it DOES seem that there's always something new which is put forward as a theory - hopefully something which can make you feel quilty - "are YOU eating enough LIVER? Tut-tut"

Call me a wet liberal but I like to think we should, as a species, be moving beyond the idea of OFFAL as a food choice. I know it's supposed to have loads of good stuff in it but when you think about what a liver actually does... just *ick*.

I always come back to when I was first diagnosed, when the neurologist who called it what it was told us to stay clear of the Internet.

There are some totally valid sources of information - MS Trust, MS Society, Shift.MS - but even here there are open forums where people can sound off about their individual symptoms and have a good old moan (a long-standing pet peeve of mine) - and even play DISABILITY ONEUPMANSHIP BINGO. Brilliant!

But my absolute favourite thing about the Internet is currently Twitter - I can't even put into words what I love about it, but in the last few months I've had many chats with people - some newly diagnosed, some old-timers - not to be the "Big I Am" but just going back to my idealistic view of solidarity and LOOKING OUT FOR EACH OTHER.

(I still hate the #MSsucks hashtag, however...)

Anyway, I organise my feeds into two lists - the full list of those that I follow, including musicians and hopefully amusing celebrities, and one called Real People - these are people who I interact with regularly or have even *gasps* met in the Real World.

One of those Real People is Abigail Budd and earlier today she posted a link to another new study which says that "measuring the walking speed of multiple sclerosis patients can help doctors assess progression of the disease and the severity of disability". It then goes on to give an idea of what level of disability can be expected based on walking speed.

I flipped out (mildly - I am at work, after all) - how is that study useful to someone who has been recently diagnosed, or even to someone who has been diagnosed for years? As Abigail said to me, it's not offering much in the way of hope or disease treatments.

It's effectively just giving a new yardstick to measure how difficult your life is / is going to be. I have visions of people with MS walking around with stopwatches. And what's going to happen if they can't manage the desired time on that particular day?

Are we so out of ideas that we're each going to turn into our own personal ATOS? The current UK government would probably call that an "empowering decentralisation" or something.

As is so often the case, I don't really know where I'm going with this (and I am hungry) - but we need to be careful about what we choose to believe (obviously).

Just like me with the thing I found about Antihistamines or my ridiculous Lactose rule - if it had meant cutting out cheese, I'd never have even considered it (wish I could find that website, though...).

My problem is that I'm a very gullible cynic - I try to take everything with a pinch of salt but like my canine friend says...



[edit: see my follow-up to this post, corrections and clarifications]

despite all the amputations

I've said it before elsewhere and often, but this is my blog and I'll repeat myself if I want to!

The Smiths were a band who, from the age of 11 to 16, meant the world to me. To this day, when I listen to 'How Soon Is Now?', I'm immediately transported back to my bedroom in my parents' house - picture this: I'm a borderline pretentious brat and I'm revising for my English Mock Exams.

There has never been and will never be a band who meant - and continue to mean - so much to me as The Smiths did then. Despite the amount of guff that Morrissey continues to spout.

However, my favourite band of all time is The Velvet Underground.

Over the course of their four officially released albums, they expanded the vocabulary of rock music - literally changing the sorts of things that rock bands could talk about, and sonically, changing the musical tools they could use to say it. From baroque art-pop to rabid bludgeoning noise to inner-city portrait chamber poetry to perfect rock-pop songs in four albums.

Plus they wrote the book on how a cool band should look.

But I think the main thing they brought to the party was, they were the first rock band to say NO.

I was talking to my wife about the story that when they first started, they had a regular gig in a New York coffee shop. The manager of the place told them that if they ever played The Black Angel's Death Song again, they would be fired on the spot.

So they did (an extended version at that). And they were.

My wife said, 'but what did the manager expect, saying that to a band?'

The thing is, before the Velvets, rock bands were grateful to be there and they said 'yes'.

I love the Beatles, but they were nice company guys you could take home to meet your mum, even with the drugs and the hair. And probably because they went to the right schools, even the Rolling Stones were viewed as naughty little boys at the height of their drugs-bust infamy.

The Velvets and Lou Reed were legendarily ungrateful, contrarian and curmudgeonly, and the POWER of young people being ungrateful and demanding the stage, saying NO as soon as F*CK YOU, led (directly and indirectly) into all the great musical genres which have followed.

And don't think that NO is necessarily a depressing or difficult word - Lou Reed and the Velvets' "no" was a positive and powerful statement of intent, it was a question as well as a rejoinder, a position of power.

An opening-up of options rather than a closing-down of negotiations.

Lou Reed has died at the age of 71. He's kind of been the poster boy for grumpy old musicians in recent years, and I still can't get my head around the album with Metallica.

But maybe that's my problem - to be his age and still be questing for a new expression of the art he saw and heard in his head - that's something we should be so lucky to aim for.

RIP Lou Reed
2 March 1942 – 27 October 2013

back to more health-related navel-gazing soon!

none so blind

I was introduced to the writing of Douglas Coupland at exactly the right time .

I was midway through my degree and I'd realised I was going to come out more-or-less unemployable, I was living in a house with people who were developing some serious Class A drug habits, and I was winging my way towards a mid-20s breakdown. Because of that, I was ripe for the picking when I first read Generation X.

It's been a while since I've bought one of his books on faith - the law of diminishing returns seemed to set in - but I've got fond memories of Microserfs, Life After God and Girlfriend In A Coma in particular.

The other weekend I read a review of his new book (which got a pretty thorough kicking). It made me go back to another of his old books, Eleanor Rigby.

I read it shortly after it was published and I can't remember thinking much of it at the time. But I did remember the basic plot of a lonely 42-year-old woman who gets a phone call from the hospital, asking her to come and visit a young man who has her listed as his 'contact-in-case-of-emergency', and who turns out to be the son she gave up for adoption twenty-odd years previously. 

Oh, and he's got Primary Progressive MS. 

Re-reading it this last week, I enjoyed the book but the problem with his books is that they tend towards the self-parodic - the characters talk and think like the characters in a Douglas Coupland book, full of hip and zeitgeist-y pop-culture references. And they're prone to wallowing in an endless quest for greater meaning and/or spirituality in Godless times.

My main issue was that the character with MS - Jeremy - was obviously slated for tragic death, but this was offset by his charm and wit. Plus he had the benefit of having VISIONS, and the skill of singing songs backwards perfectly, because he's special.

So anyway on one level, the portrayal of MS is good because Jeremy is so comfortable with his condition, which is always labelled as Primary Progressive MS. But on the whole, I don't know why Coupland chose to make Jeremy a PwMS - what's HIS relationship to it?

 

I'm (naturally?) a bit uncomfortable with MS being used as a plot-device (think about it, it will always end tragically in any kind of fiction).
My favourite bit was this joke, which Jeremy tells to a guy who has just given him a job selling mattresses - at which Jeremy is obviously a NATURAL (see: special):

Jeremy asked, "How many people with MS does it take to put in a lightbulb?"

Ken did not know how many.

"Five million - one person to do it, and four million nine hundred and ninety-nine thousand nine hundred and ninety-nine to write depressing online web-logs."

The terminology is nicely dated (who says 'web-logs' anymore? Ah, the early noughties!) but I think it still applies... *ahem*.

Now interestingly (or not), the book came out in 2004 - which was the year after I'd had what I now see was an attack of MS symptoms, and the attack which set me on the road to my diagnosis. Seeing as I had pretty much all of these symptoms (listed in the book) at some point the previous year, why did I not make the link?

It's strange looking back that I didn't even make a SUBLIMINAL link to the symptoms that were bothering me - I'd had varying levels of numbness for at least 2-3 years by this point.

It's either me being a bit thick, or being so far in denial that I had no idea what was going on in my brain.
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Searching for an image for this post, I came across the beggaring-belief Eleanor Rigby Hotel - the website doesn't say how many single beds there are here.

Really, who would want to stay in a hotel associated with "All the Lonely People"? Even with "crisp white linen and mellow soft furnishings"?