Monday 10 August 2009

guilt by implication, by association....

A historic judgement was made the other day that could remove the fear of prosecution from people travelling abroad to help relatives seeking an assisted suicide. I've written about Debbie Purdy before. To plagiarise myself:

"Debbie Purdy was diagnosed with primary progressive MS in 1995; she can no longer walk and is gradually losing the strength in her upper body. Her condition is only going to get worse, and if/when her condition becomes unbearable, she would like her husband to accompany her to a clinic in Switerland where she can end her own life in comfort and with dignity. Her dilemma, and the reason that she is going to court, is that she would like her husband Omar to be by her side on the trip, but it is not clear in British law whether or not he would become liable for prosecution on his return to the UK for assisting in a suicide."

The Law Lords have now unanimously ruled in Purdy's favour and the Director of Public Prosecutions has been ordered to immediately draw up a policy that would spell out when prosecutions would and would not be pursued - in other words, providing people like Purdy with the clarity they need to help them make their decision.

I'm not going to get into the rights and wrongs of this case, although instinctively I feel that I agree with Matthew Parris:

"I can’t tell you how simple I find these arguments: so simple that I’ve hardly bothered to write about the issue. Suicide is the greatest of human freedoms, underwriting all the others, for it gives us the possibility of defying every thing and every one there is. The possibility of suicide is what makes life voluntary and each new day an act of will. No wonder the faith community gnash their teeth at suicide. God Himself, if He existed, would gnash His teeth at suicide: the supreme act of defiance, the final raspberry. The knowledge that I’m here by choice, that every breath I take I take by choice, injects into my soul a transcendent joy. That we can let go whenever we want is for me the deepest sort of thrill. People should be able to choose. Obviously. And if they choose the end but seek help with the means, they should be able to. Obviously. End of argument."

Parris actually goes onto say that he is opposed to legalising assisted suicide - on the grounds that this means that someone has to officially decide who can, and who cannot, die:

"It is one thing for the State to decline, at its discretion, to prosecute someone who has killed without authority. It is quite another thing for the State to issue an authority to kill. We do best, I think, to stay on that first, more limited, ground."

Interesting, but the rights and wrongs of assisted suicide are not what has caught my attention most about this whole debate. Oh no. Perhaps not surprisingly, as a sufferer myself, I've been dismayed by the way that the coverage of the debate is presenting Multiple Sclerosis. MS, according to every single news report that I have seen, is a disease so awful that you will want to kill yourself. If you have MS, then your life is all downhill from here. MS will strip you of your mobility, your dignity and then it will kill you.

I know that this isn't the main thrust of these stories, but it is the - perhaps unintended - insinuation. Coverage like this will surely only help to reinforce people's existing misconceptions of MS. They're bad enough already: remember that poll the MS Society carried out back in April?

"Almost half of those surveyed in the poll couldn’t guess how many people in the UK have the condition, and of those who did answer, 80 per cent underestimated the true figure. In fact, only six per cent were able correctly to identify that there are more than 85,000 people in the UK with MS, making it the most common, disabling neurological condition affecting young adults. Just under half of respondents to the survey couldn’t name a single symptom of MS, while only a quarter realised that it’s a disease that mostly affects people aged between 25 and 34, when a diagnosis is most likely to be made. Around 40 per cent (two in five) of respondents assumed a diagnosis of MS meant a lifetime in a wheelchair, whereas just 20 per cent of people with MS rely on one. Alarmingly, six per cent of people attributed MS to ‘public health issues’ such as obesity, poor diet, smoking or germs. Some respondents even thought MS led to brittle bones, bad teeth, phlegm and loss of appetite."

Worse yet, can you imagine how you would feel if you read all this kind of coverage of MS at a time when you were just being diagnosed with it? You're likely to already be feeling pretty vulnerable, but how is seeing MS being linked so closely with all this coverage of assisted suicide going to make you feel? Not great, I would think.

I have MS. It's not something that I advertise, especially, but neither is it a secret. If someone asks me about it or, as they did today, asks a few direct questions about why I had a lumbar puncture, then I'll tell them. My symptoms are not obvious: I don't use a walking stick or a wheelchair and I'm still able to go running and to play football, but when some people - not all by any means - hear that I have MS, I can almost see their preconceptions slotting into place before my eyes. People do not really know what MS is. Why would they? Until I started suffering the symptoms and it became a possible diagnosis, I didn't really know anything about it either.

I'm probably being oversensitive, but is it too much to hope for that we might perhaps have been able to have the same interesting debate about assisted suicide without focusing on Debbie Purdy's particular condition? Or perhaps to have an explanation of what Primary Progressive MS is and that there are different types of MS and that every case is different? That there's no certainty of outcome? That almost no one actually dies of MS and that the average lifespan for someone with MS is almost (almost!) the same as for everyone else?

Is that too much to ask for?

In a word: yes. I'm sure it probably is. Lest we forget, you can probably also subsititute the "MS" in every sentence above with the name of any other disease or condition. Can we manage to be sensitive about all of them all of the time do you think?


Whatever next? Insisting on having a footnote on all meeting minutes indicating that the chairman could be a woman as well as a man and that the title doesn't necessarily denote the gender of the occupant? Well, it's either that or just calling them "the chair" or "chairperson" and that would just be silly........

It's political correctness gone mad, I tell you.

Perhaps this is where the internet really comes into its own. The newspapers and TV coverage may be painting a story one way, but if you're interested enough to go and look up Multiple Sclerosis on wikipedia, you'll find a really well-written and informative article. I know that not all wikipedia entries can be trusted, but this one has been pulled out as being one of the very best, and it's a great place to start. There are some very good information sites run by people like the MS Society, but there's also a whole world of more personal information contained within blogs (like this one), community sites (like this one) and even on dear old Twitter. I'm not bigging myself up here especially, but I know that I have taken great comfort from reading about and sharing other people's experiences. The process of being diagnosed, deciding what drugs to take and how to inject them, what to ask my neurologist, what a lumbar puncture will be like.... priceless human contact that all helps to dispel the uncertainty and to create a feeling that you're not in this on your own. I'm not setting out to preach, but if anyone happens to google their way here looking for information, then maybe, just maybe, they will be comforted and informed by what they read and might just have some of the bad juju of misinformation and ignorance dispelled.

...or they'll just learn a load of useless crap about whatever transient fluff is passing across my monkey-brain at any given time.

One or the other.


  1. Wow. You know, as far as people being informed of what MS is and how it affects those with it, I completely agree with you. I also agree with you that there are plenty of conditions that need similar attention.

    For example, my little cousin has diabetes, and has since she was very young. (around age two she was diagnosed.) Most people don't know about neuropathy and how it can effect you, either. And it worries me that it, as a cause, gets little to no attention. Bravo for pointing out that there are lesser known about afflictions that deserve attention as well. Cancer and AIDS will always have massive amounts of research devoted to them, and rightly so. But I am always disheartened when our local MS or Diabetes walk rolls around and the fundraising is less than stellar, as is the publicity for them.

    I don't kow I agree with you about the publicity related to the case you were just talking about. While there is a lot of attention being brought to the horrors of MS, especially in that woman's specific case, it can't entirely be a terrible thing given the general lack of knowledge about MS in general (as you pointed out)

    I know it must be disheartening to see the disease so advanced, and for it be such a personal thing for you. Everyone is different. But I think I'd feel a little bit of hope thinking that maybe there might be more done now that there has been wider publicity - better treatments sought, more research funded. Hope for that.

    As far as the assisted suicide issue, I'm torn. I personally believe suicide is the most selfish thing a person can do. But given this person's situation, it brings a newer aspect to the idea that I had never considered fully.

    I hope you won't feel offended that I express I hope that is something you never have to consider. I know I would personally feel loss for you, as would more people than I think you could imagine, should we lose you.

    Here's wishing you a strength and a little tenacity. You're too special to lose early.

    I've got a lot to think about now.


  2. I was thinking of you when I read about this case. Mainly along the lines of what you were saying, like 'Christ, you don't need to read this worst case scenario stuff, it's a bit of a head eff.' Only with the ruder word used. Do you use rude words on here? Oh yeah, so you do. That one then.

    Yeah, I don't know what the majority view of MS is but my layman's perception has always been that it's one of those mysterious things that can be gossamer light and hardly affect the person, or more severe in some cases... I don't know if I had doom/gloom preconceptions but don't think so. Not that I'm equipped to speak for The Public in any way. Just that while I see your point completely, I hope that most people would have a bit more sense than to think MS is an automatic life sentence. Anyone who reads your posts on the subject will get a far more enlightened view, that's for sure.

    Keep on with what you're doing, SuperSwiss Steelylegs. Nine mile runs and marathons indeed, it makes me feel tired just thinking about it. You're a force of nature.