52% intelligent. 9% modest. More monkey than bear.

Tuesday, October 07, 2008

how long to go until you hit the ground?

Did you see that story the other day about the lady with multiple sclerosis who was going to court to clarify her right to travel to Switzerland for an assisted suicide? 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 nature of her condition means that by the time she is ready to die, she is unlikely to be able to travel without assistance. Should she travel to die before she is ready, or should she risk her husband's prosecution by travelling with him.

Apparently the law usually turns a blind eye in these cases, but this is understandably not good enough for Ms Purdy:

"I just want clarity so I know whether or not my husband Omar will be prosecuted or questioned by the police if I decide to travel abroad to die and he accompanies me. I want to know what the law considers to be assisting suicide - is Omar open to prosecution if he helps me into a taxi to the airport, or books my flights?"

Where do they draw the line of what is and is not worthy of prosecution?

There are big issues at stake here, of course there are, and it's a horrible position for this couple to be in, but I can't tear my attention away from the specifics of Ms Purdy's condition and the fact that she is anticipating it becoming serious enough that she will want to end her own life. She has multiple sclerosis. Since August 2005, my ears have been finely attuned to any mention of that condition because of it's uncomfortable proximity to my own WTs.

Let's be clear: I have transverse myelitis - a single lesion on my cervical spinal cord. This is clinically distinct from primary progressive multiple sclerosis, where multiple lesions develop in the brain and central nervous system and cause the damage that leads inexorably to ever increasing pain and disability. I have many and widespread symptoms caused by the disruption the lesion in my neck has created to the passage of nerve signals down my body. I have weakness and muscle-wastage. I have numbness and pins and needles. It is annoying, worrying and inconvenient, but it has ultimately not stopped me doing very much. I still go running; I still play football; I swim. A little slower, perhaps, but I still do them.

Apparently it's a one in a million chance to get transverse myelitis at all, so in that sense, I've obviously been unlucky (and maybe I should have bought a lottery ticket that week, eh?). However, other people with the same condition lose the ability to walk, so in many ways I've been lucky that I've got away so lightly. I've been lucky in other ways too: although TM is related to MS, it is different. By the very definition of the condition, I will need to develop another lesion - a sclerosis - before I can be said to have MS - multiple sclerosis. As long as I only have the one lesion, then my symptoms are unlikely to get any worse. If I had MS, then I would have multiple lesions and my condition would be likely to get progressively worse as each lesion successively damaged my nervous system... as is happening to Debbie Purdy.

I am starting to hate the way that MS is covered in the press: when Richard Pryor died, he was reported to have died of MS. Well, you don't die of MS. It can make your life difficult and uncomfortable, but it's not very likely to actually kill you. In itself, MS is not a death sentence. There are also lots of different types of MS. Some people, like Debbie Purdy, have primary progressive MS, where the symptoms get worse and worse. Lots of people, however, have relapsing-remitting MS, where the symptoms come on suddenly and then recede, perhaps entirely. A diagnosis with multiple sclerosis does not mean that you will end up in a wheelchair or that you are going to die young.

What Debbie Purdy's case really drove home for me though is that, for all that, this can be a disease so horrible that it can drive you to think about ending your own life. One of the secondary symptoms of MS is depression, and frankly I'm not surprised. I don't have MS, but it's still not a very comfortable thought. You're actually, statistically speaking, far more likely to have MS (one in every few hundred thousand people) than you are to have transverse myelitis (one in a few million). In some ways it's only a transitory diagnosis: all it takes is one more lesion and TM slides into MS. Medical science's understanding of the brain chemistry involved is sketchy, but the definitions are exact. I may never develop another lesion, or if I do, I could get one tomorrow or in thirty years time. I try not to worry about something that might never happen, but sometimes a story like this makes it hard not to let the mind wander a bit into what might be.

Ah, to hell with it. As someone wise once said:

"You might be a king or a little street sweeper,
but sooner or later you dance with the Reaper.
Get down with your bad self

With that in mind, I'm going to pull my finger out and sign up for some triathlons next year.

My last triathlon was in June 2005, just before I developed my first symptoms and started seeing the neurologist who told me to pull out of the London Triathlon I was supposed to be completing in August (my name is on the back of the event t-shirt as a competitor). That tri - at Emberton Park, was half distance: 750m open water swim, 20km cycle and 5km run. I did it in 1.23.37 and came 121st out of 190. At the time I thought that was great preparation for London, but as it turns out that was the summit of my achievements. I'm not sure if I'm going to be able to get to the point where I can contemplate the olympic distance 1500m swim, 40km cycle and 10km run - I'm now no longer confident in my body's ability to handle the training (it was in training for London that I first developed the symptoms). What I am going to do though is to get back on the horse by entering a few sprint triathlons: 400m swim, 20km cycle, 5km run. I may not be as fast or as strong as I used to be - hell, I'm three years older - but I'm going to get off my arse and get busy. How will I know unless I try?

After all, who knows what tomorrow might bring?

As Vitalstatistix would have put it, tomorrow the sky may fall on our heads....

... and this way I may get to wear lyrca and model a wetsuit in public again. Times are hard enough as it is: I wouldn't want the world to miss out on a nice bit of lycra porn.

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  • At 10:16 am, Blogger LB said…

    It's not "porn", let me assure you.


  • At 12:39 pm, Blogger Cody Bones said…

    Stop it LB, I luv me some British Lycra Porn

  • At 12:56 pm, Blogger swisslet said…

    LB - you forget to mention that it's not especially "nice" either!

  • At 8:17 pm, Blogger Al said…

    Re the more serious stuff, I think i know why. In fact, I have a long-standing, two-way deal with someone that something will be be done if needed. Meanwhile.... get working on those dolphin kicks!

  • At 9:31 pm, Anonymous Anonymous said…

    I appreciate your discussion about the difference between MS and Transverse Myelitis. I, too, have transverse myelitis. I still swim and I still go running.

    I am starting a new website: TransverseMyelitis.net to raise awareness about TM.

    I was wondering if you would be interested in writing a short piece about your experience with Transverse Myelitis.


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