I have multiple sclerosis. I also have - not in any particular order - several wheelchairs, a camera (or two) and half shares in a dog.
The multiple sclerosis appeared when I was what the medical textbooks flatteringly describe as "a young woman in the prime of life". One moment I was working full-time as a barrister and training for my second marathon, hoping to beat 3hrs 30mins; the next everything had gone a bit weird. I thought it was a stroke: strokes in young(ish) women were in the news, Sharon Stone having had one a few months earlier. That was the neurologist’s first reaction too, although he warned me there were two other contenders: multiple sclerosis or a brain tumour. I wanted the brain tumour, but I didn’t get a choice.
It is a shattering diagnosis at almost any time but was particularly so in those days when there weren’t the treatment options there are now. No nurse specialist, no follow-up, no plan. The neurologist was faultless – even as he was giving me the diagnosis, I was thinking how well he was doing it – but he had nothing to offer beside kind words and a warning to beware of cranky websites. I promised to treat the latter with the scepticism they deserved and went out, blinking, into the sunshine. The tube station on my way back to work had an enormous poster fundraising for Sue Ryder care homes, with a picture of a woman next to an emu and the strapline, “Ann has MS … and an unusual taste in pets”. I got the message: MS had wrought such havoc on Ann than most people wouldn’t realise she was still human. Still, that was better than the MS Society advert I remembered seeing in the late 1980s.
MS Society advert - c.late 1980s/ early 1990s
I was devastated by the news and didn’t make much, or any, attempt to find a stiff upper lip – it says a lot for my friends that I have some left – while at the same time being extremely scornful when I read that the diagnosis generally takes two years to come to terms with. (“Two years???!!! People should get a grip!” Even if I wasn’t.) It was the uncertainty and the conflicting messages which were so difficult. The MS Society appeared to be putting all its energy into dispelling the impression given by its 1980s advert, peddling a message all would be fine while still listing everything which could happen. “Incontinent? Unable to walk? Cognitive decline? Disabling tremors? Choking? Don’t worry, you probably won’t get ALL of these. Remember: everyone’s MS is different; and it isn’t usually terminal.” Cheers. No permission to mourn, no control and no chance of either a cure or a rapid release. “Wrestling with phantoms”, I’ve heard it described as. A full life sentence with no chance of parole.
The “two years” time estimate turned out to be about right, although it may have helped that it was around then that I started to need a wheelchair, so at least I had something real with which to wrestle. Since then, the MS has taken a highly idiosyncratic course, giving endless scope for self-blame. If I could change one thing, it would be the haunting sense that I’m fine really, just not trying hard enough.
The camera is vaguely connected with the MS: a friend gave me one as thanks for taking her on a Hurtigruten cruise down the Norwegian fjords. Pre-digital photography had exasperated me – where to store all the negatives? – and I despised people who spent their holidays worrying about their photographs rather than experiencing their surroundings. Why spend time and money taking indifferent pictures when you could buy a postcard for 25p? But when Sara gave me the camera, it seemed ungrateful not to use it. Then the MS started to affect my speech and I became mute. It would make a good story to continue with “… so photographs were the only way I could communicate”, but that would be outwith even the widest bounds of poetic licence. I could communicate perfectly well with words, either using a pen and paper or by typing on a Samsung Q1 (a pre-iPad tablet: yes, such things did exist). Plus my photography is well below the standard of “communicating” anything. Rather, the camera became my way of dealing with any form of outdoor event. A walk in the countryside when you can’t walk, can’t talk and don’t have a dog leaves a lot to be desired. Taking pictures gave me something to do and released everyone else from trying to chat. As going for a walk is the default form of entertainment amongst most of my friends and relatives, by the time I regained my speech about 18 months later photography was firmly established as a hobby. I have no doubt at all that my pictures would be better if I tried harder and practised more, but for some reason that knowledge comes without the side-order of guilt which is there if you substitute the word “walking” for “pictures”.
That covers the MS, the wheelchairs and the camera. For the dog, you’ll have to read the blog.