(This is sort of a public service announcement as I get lots of visitors who come here from a search for “multiple sclerosis”.)
I’m a bit grumpy today, not just because I’m in bed with a temperature of 38.7, sweating and occasionally coughing so hard I eject alarmingly yellow blobs of what is presumably some gelatinous form of plutonium, but because I should be at the airport flying to Oslo (where my employers are headquartered) for a meet-up with my excellent team-mates and the notoriously Epicurean office Xmas party. But I’ve elected not to go.
“What’s that?”, you cry. “You – Bruce – who plays punk guitar, does kickboxing and wrestles poodles (and wins!) have turned into Shirley Temple!” you mock.
Here’s the reasoning, in the hope that if you are a merry new recruit to the world of MS (I’m a veteran of ’99), it’ll be some help to you.
When you’re newly diagnosed it’s quite normal to be in and out of your neurologists’s office so often that the staff greet you by first name and soon start darting into stock rooms or crouching behind desks as you approach. You’re new, you’re worried and every tiny twinge sets of your anxiety. Later on, particularly if your kind of MS is cyclical remitting-relapsing, you might breathe a sigh of relief and start to think ‘I won’t let this diagnosis change me!’ and potentially push yourself too far. It’s not a good idea to be an MS hero.
As you probably know if you have it, MS is a disease of the auto-immune system. In highly technical terms, think of an MS person’s immune system as being like a crowd of drunk Millwall FC fans waiting for the opposing fans to enter their stadium. When they see the opposition, they’ll beat them up. But once the opposition is defeated, they’ll very likely smash a few windows, beat up some police, their own friends, set fire to their neighbours’ cars and then turn on each other.
Getting even more scientific, there are no police or windows in your immune system, so it will attack your nerves instead, stripping their myelin sheaths which will never regenerate.
As I write this, my eyes hurt if I move them left, right, up or down. This isn’t much fun – you tend to turn your head instead of having to move your eyes which makes you look a bit like a robot in a sci-fi film. But when this happens to me it’s a warning signal. One of my first MS presentations was going effectively blind in my left eye because of Optic Neuritis, which is an inflammation of the optic nerve that makes your eyes painful and vision darkened. (Mine was dealt with by injecting anti-inflammatory goo just behind the eye, a procedure which was pretty low in chuckles.)
I also have an increase in what I call “fizzy fingers” (due to my incorrigible love of alliteration). This is when my fingertips feel numb or full of “pins and needles”. I always have this to some extent – it’s why I can’t play guitar properly any more – and, to my eternal regret, it’s my own fault. When I was eventually diagnosed (3 years after the optic neuritis) my hands were basically not obeying orders – my handwriting was a scrawl, I couldn’t do my own buttons up etc. But I heroically soldiered on before eventually being admitted to hospital and being put on 1000mg of steroids daily in the medical equivalent of tear-gassing the rioting Millwall fans and shutting your immune system down so it can’t do any more damage. But the damage already done can’t be reversed.
So these days, when I get a little bit of a cold I soldier on. But when I start to get other more sinister signs, I give up and take to my bed. While I know that my team mates would love to sit in a room with me and my pathogens, inhaling the gift of a Christmas fever to take to their loved ones, and I understand that the ladies of Oslo have spent many weeks putting up welcoming street decorations, I’m vegging out until the auto-immune Millwall fans go back to their mums’ houses. (From 15 years’ experience, a couple of days.)
It’s not worth being heroic when the risk is irreparable damage (and I have 2 dependant kids, too). Your MS will be different; your level of heroism may be different. Good luck and take care.
You haven’t got one from me. But don’t feel weepy or left-out; nobody has. I don’t send them. Not just because I’m a miserable old curmudgeon (though I am) but because I think it’s silly to spend money on cards, money to send them (often via plane) so you can put it in a landfill after 10 days.
I used to love going on peaceful demos when I was a kid. Aged about 14, I’d be on a coach once a month to London, or Greenham Common or some US military base to march in support of CND, Troops Out or against the National Front.
When today’s anti-austerity marches were announced, my wife and I thought it would be great to march as a family, to show the government how we feel.
But I’m ashamed to say that I got cold feet. Recently, the Metropolitan Police have taken to “kettling” demonstrators. Wikipedia defines kettling as “a police tactic for controlling large crowds during demonstrations or protests. It involves the formation of large cordons of police officers who then move to contain a crowd within a limited area. Protesters are left only one choice of exit, determined by the police, or are completely prevented from leaving. The tactic has proved controversial, not least because it has resulted in the detention of ordinary bystanders as well as protestors.”
There have been reports of people being kettled for hours with no access to food, or to toilets. As a chap with Multiple Sclerosis, being contained with no access to the loo is unlikely to end well. More importantly, it’s likely to traumatise my kids, particularly my son who has learning difficulties.
So, we decided not to go. And I hate it that fear of the police has prevented four people expressing their opinion.
(It’s too late to help us now, but there’s an app called Sukey “designed to keep people safe, mobile and informed during demonstrations. We crowdsource updates from twitter and other online and offline sources in order to provide our users with a timely overview of what is going on at a demonstration”.)
One in five (21%) British adults surveyed think disabled people need to accept they can’t have the same opportunities in life
one in four (26%) Britons think bars and nightclubs are not places for people with wheelchairs
42% of people with MS admit to being concerned about telling their employer about their condition in the current economic climate
Over half (56%) of people with MS find it harder to socialise since their diagnosis, with around two-thirds (67%) saying their MS has hampered their ability to enjoy everyday social activities like drinking, eating out or shopping
The report concludes
MS is unpredictable and, perhaps largely because of this, widely misunderstood. It is different for everyone, and everyone responds to it differently.
But what most with MS have in common is a desire to live as full and active a life as possible before the condition strips more and more choices away from them.
I’m lucky; I travel a lot, do karate, and live a normal life. There’s a lot of ignorance about what MS is. The problem is that it’s different for every person. I was diagnosed in 1999 after I lost my vision in my left eye and the use of my left leg and arm. This is why my dancing is so crap.
Nowadays symptoms are
Tiredness. That’s why, if you invite me to speak and ask me to take a long haul Economy flight, I’ll need 2 nights e.g. a full day before the gig to recover
Clumsiness when tired, and slipping over on Oslo pavements in winter
Dry mouth and swallowing difficulties, which is why I drink gallons of water at conferences and then have to rush to the loo. (Apologies if I rush past you if you’re waiting to ask a question – I’m not being a diva, just seeking a pissoir)
Trigeminal neuralgia, random sensations like electric shocks, when touched unexpectedly, particularly on the face
It’s been exhilarating, eye-opening and fun, but has taken its toll physically, so I’m officially hibernating until New Year to keep them pesky scleroses at bay.
If you need any contact with Opera until then, please seek out Chris Mills who can help. If you email me and would like an urgent response, please re-send it on the 28 December so it’s top o’the inbox.
Finally, have a Merry Consumerfest, regardless of which invisible friend in the sky your version of Consumerfest is dedicated to (if any). As regular readers know, I don’t send cards; I think sending pre-packaged sentiments directly into landfill via road and plane is wasteful, so I give the money to charity instead. This year I’m sending a few quid to a charity that my friend Henny is involved with called Stuff for Sam, which
is about raising money for our 4 year old friend Sam who was paralysed in a car accident in 2005. We hope to raise £30k to help buy him special equipment to stimulate and help him develop.
They’re nearly at that target if you feel like helping too.
With my last job I had life insurance, but when I decided to move to Opera I had to get my own insurance so that my mortgage would be paid off if I shuffle off this mortal coil, reducing the burden on my wife.
So I rang the big brokers, moneysupermarket.com in March this year. A few questions about age, life-style etc and the guy on the phone told me that for a 41 year old non-smoker it should cost me about £50 a month. Then he asked the question “do you have any neurological conditions such as multiple sclerosis?”. On my affirmative reply, it was practically as if klaxons started sounding in the call centre.
So in May, a special nurse who does no nursing came to my door to extract some blood from me in order that Legal and General might learn just how risky I am. “You’ll hear from us soon”, said the lady who does nothing but take lepers’ blood.
But I didn’t. On chasing up money supermarket at the end of June (four months after my application), I was told to write a letter to Legal and General telling them where I will travel to for work and pleasure. No-one actually bothered to contact me to ask me for such a letter; presumably most people with MS develop compensatory telepathic powers, so it looks like I’ve missed out there as well.
As well as paying double, they will not give me critical illnes cover (that’s where you get the money on diagnosis of a terminal illness rather than when your toes curl up, so you can have a massive piss-up before you croak). So if I get cancer (which is of course nothing to do with MS), I don’t get a pay out. If you don’t have MS, but are diagnosed with liver cancer/ brain tumour, you do get a payout. This doesn’t seem fair to me; I don’t see a link between MS and cancer, AIDS and other terminal illnesses.
Am I an isolated case? Have you had any discriminatory treatment by the insurance industry because of a disability? (You can write to me privately at “bruce” this domain name if you prefer).
With all the excitement this week of my wife and kids going on holiday, and my crazy bachelor life installing Ubuntu and upgrading WordPress (don’t tell my wife, will you?) I completely forgot to mark an anniversary—it’s eight years since I was diagnosed with MS.
I’m pleased to say I’m still well. In fact, I’m better than I was three years ago when I bid my MS a happy fifth birthday, as I’ve given up smoking and taken up karate.
One thing that has changed in three years is that I do more speaking at conferences about accessibility, and I tend to mention the fact that I have a disability. It’s not because I’m trying to claim any moral authority (after all, I have a disability but I’m not disabled) but because I’m declaring a personal interest.
Recently, I was asked whether my interest in web accessibility is solely due to my MS. After a good hard think, I declare my answer to be no.
My first encounters with the web were in 1999 when my wife was pregnant and I could get no English-language information out in Thailand, so went to the Web. When I was diagnosed as having MS, my doctors gave me a photocopy from an English medical book talking in doctorese about how to recognise MS from autopsy photographs of brains. Not that useful, and not exactly encouraging, so I remembered my happy experience with pregnancy sites and turned to the Web again for information, and found it via Jooly’s Joint—a large community of people, many far less mobile or dextrous than myself, working together and supporting each other. And just, well, getting on with life. So I decided to stop feeling sorry for myself and get on with it, too.
Community and communication are the things that I love about the web. For example, in Iran, mad theocratic regimes try to ban free expression, but there are Iranian blogs everywhere, with people telling their truths to anyone who’ll listen. Online communities gather around music, sports, eBay crap, politics, even web standards. The driver for this was the simplicity of html, and the forgiving nature of browsers, that made “making a website” a reasonably easy task.
Preserving the low barrier to entry is why I find the obsession with serving webpages as XML to be foolish. What’s the point of a site that breaks completely if there’s an unencoded ampersand? Sure, data for banks, finances, payrolls needs to be unambiguously parsable well-formed XML, but Web content needs more forgiving consumption, because Web content isn’t merely data—it’s communication. Imagine refusing to take your fingers out of your ears until your foreign friend speaks perfectly grammatically correct English.
I’ve given the HTML 5 crew a hard time, and some of their participants seem shamefully dismissive of people with disabilities, but their belief in “fault-tolerant” browsers and markup, and their wish to make the core elements of the language as accessible as possible are entirely in keeping with my views on the absolute necessity of making web content easy to write.
That low barrier to entry for writing web content needs a parallel low barrier to entry for accessing that information. The web is such an exciting medium because it’s the easiest to access for people with disabilities if you code it correctly, and for the most part, coding it properly is not hard. Headings, sensible link text, alt text sorts out most problems.
I passionately believe that communication should be easy, and I’ve an opportunity to influence the development of the web by evangelising to organisations, individuals, producing books, articles and participating in mailing lists and forums.
One reason that I mark the anniversary of my diagnosis is that there’s a rule of thumb that says your condition ten to fifteen years after diagnosis is a rough indicator of your long-term prospects. There’s no guarantee, of course: in five years time I could be in a wheelchair or unable to speak.
Even if that does happen, I’ll still want to read the news, chat with friends, buy music and generally surf the web, and I’ll be on your case if your websites are inaccessible to me.
It’s true that my own circumstance makes my evangelism more urgent, and (perhaps) more heartfelt. But it doesn’t mean that if you’ve got no disability, you shouldn’t care. You should.
It took us 10 months to train for this, twice a week, but both Marina and I passed our orange belt Karate/ Kickboxing gradings with a grade B. Not bad for a fat old fart with multiple sclerosis, even if I say so myself.
Here we are, very sweaty and dishevelled, after sparring. Warner and Sean comprehensively kicked my arse.
Woe betide anyone who disagrees with me now about the accessibility of microformats or PDF!