Nick Lewis is an author, poet and artist. He was diagnosed with MS some 30 years ago. What follows is a serial collection of stories based on incidents in his life during that time.
It was summer 1988. My wife Tio, an international aid worker for the Red Cross, had been away for a couple of months. Unexpectedly, there was a terrible family emergency. Now I needed to join her in Australia. There was one thing I had to do before I left.
I had contracted a peculiar blurring of the vision in my left eye, (as well as, if I admitted it – which I didn’t, a paling of the image) together with a disconcerting intermittent buzzing feeling in the head which lasted only fractions of a second.
I had decided to see the doctor about it: maybe it was a brain tumour; but of course I assumed it was ‘just an eye problem’. (While I’d been in Oxford, the previous week, I’d been to see a GP friend, wanting confirmation of that. He said that it was some form of optic neuritis.} But what was causing it?
Now I was off to Brisbane. I kissed my colleague Monica goodbye, feeling grateful to this funny, stern young woman for baling me out emotionally, and caught the tube to Old Street (Victoria Line, change to Northern Line at Kings Cross). From there it was just a short walk (writing that now is sad but “a short walk” is nice to remember) to Moorfields Eye Hospital.
I needed to know what was going on inside my head. I gave my name to someone behind a glass partition, and settled down in Outpatients to wait.
My flight was the next morning. I just had a bit of shopping to do, so I had the whole afternoon and the Guardian. I finished the paper, and the afternoon, not without more and more frequent visits to the glass partition with hostile glances at people who appeared to be jumping the queue. Didn’t they know how urgent was my case? So I gave up. It would probably sort itself out.
When I got home after an incredible holiday — not without some confusion arising from the uncertain state of my vision, I went back to Moorfields. They gave me a variety of tests. My instinct is always to endow the consultant with my complete confidence. This one I felt I could trust.
She asked me lots of questions, filled in forms, and did some familiar coordination tests that had been done when I had complained of minor symptoms, but also one which involved the screen timing my reactions to the appearance of images on it. She said I had optic neuritis and that amongst other things it could be MS. I felt relieved to have some kind of diagnosis, but overwhelmed too. We made an appointment to look at the results of the tests, and I supposed, for a definitive diagnosis.
I delivered myself back to Moorfields, feeling that they’d finally tell me what was wrong and sort me out. I was ushered in to see a different doctor. While he started out on the same series of tests that I had had before, I became increasingly disconcerted. Eventually, when he asked me to look through exactly the same piece of apparatus as previously, I told him that I’d done all this. Shamefacedly he admitted that they had lost my notes. When I got home I cried: one of those roars of pain and rage in which you notice your shoulders shaking uncontrollably.
The next time I turned up at Moorfields I was met by a troika of dignitaries including its chief administrator. I had assuaged my tears with a furious letter of complaint. How could they treat anyone like this? It was hard enough, but possible, to live with the unlikely diagnosis. “Surely.”, I had thought, “it couldn’t happen – it’s bound to turn out to be something else.
And if it is MS, then we’ll have to deal with that once we know.” But their incompetence amounted to torture. It was like telling the infantryman, subjected by foolhardy generals to battle, and returning home from the Somme, that he’d been dreaming. He hadn’t fought the battle yet: he’d got to do it all over again.
So I went through the same series of tests and back again two weeks later to get the result. I think I knew what it would be, but in those days, I didn’t have the Internet, and so could hope it was something else. Tio hadn’t usually come with me on my medical appointments. But she did this time. I imagine that she sensed my trepidation, and that she too feared it would be bad news.
With no ceremony, the consultant told me, “You have Multiple Sclerosis”. No counselling was offered, although I think he mentioned the MS Society. I remember Moorfields as being set in a fairly ugly part of London. But that might be because of the associations. Anyway, we found somewhere for a coffee and sat down to try to absorb the shock. We felt comforted, but a little dubious, by the ‘benign form’ diagnosis – many are told this, presumably to lessen the blow, without being told the likely future course.
But there was no escaping it: I had been diagnosed as having MS. Who could I turn to for help in coming to terms with it? The MS Society was an obvious first port of call. And then I looked, for the first time as someone with MS, at their advert on the Underground platform. If you’re anything approaching my age, you’ve probably seen them somewhere. I’d seen them before. Strong, effective stuff. Images of people with parts of their body being ripped off.
Now, I was horrified. This wasn’t help: this was terror. And the terrorists were the MS Society. “My own” society, ripping me to shreds. Turning me into litter, to be picked up please, by the conscientious, and tidied out of the way. Meanwhile, I was needing the opposite: to feel good about myself. If it was up to the MS Society, I’d still be feeling very bad. Their next campaign featured despairing, helpless men with cradling arms holding someone up, still featuring the ripped paper motif, it was called “A hope in hell”. Who was putting us there?
- The MS Society is no longer top-heavy with charitable grandees and has a constitution and website in which people with MS play a larger part.