7 March 2016
Nick Lewis is an author, poet and artist. He is currently working on a serialised novel based on his experience of living with MS. We are delighted to share three chapters from the author's work-in-progress: ‘Travels With My Self’.
In 2015, Nick Lewis was Highly Commended for Poetry by the Creative Future Literary Awards, a national literary competition aimed at talented marginalised writers who lack opportunities due to mental health issues, disability, health or social circumstance.
Based in Oxfordshire, Nick has previously worked in disability journalism in addition to writing poetry. He was a journalist (Socialist Society, Interlink) in the early 1980s and then a disability journalist (London Disability News, Disability Awareness in Action), and published physical and online copies of the recruitment magazine Ready Willing Able in the 1990s.
Jogging yourself out of it
Those days I spent most of my time voluntarily editing a left wing magazine, and proof reading and copy editing for various publishers to provide some kind of income. (It was the early 1980s, Ken Livingstone was running the Greater London Council, and like many of my friends, I felt there must be room for our publications in the future.
But sitting at my Craster Road desk, I felt I should take some exercise. Unlike the modern, bloated industrial fashion for gymnasium machinery, the enthusiasm at the time was for running. My morning run took me fifteen minutes before breakfast – a few minutes more if I bought the paper on the way back. It took me down the street, to a path through the Tulse Hill council flats, and into Brockwell Park.
The rolling grassland park, complete with a modest stately home, Brockwell Hall, was created by a wealthy glass merchant in the early nineteenth century, and bought for the public on the initiative of a local MP. I ran past a series of ponds to check out the coots and Canada geese. Railings kept them safe from the public, and they built nests and reproduced at quite close quarters with walkers, children and dogs. I grew to recognise two lady dog-walkers who would stop for a gossip by the ponds.
Over a number of years of morning runs following my diagnosis, I did not notice much difference in my fitness apart from tiring earlier, and the slightly greater reluctance of my legs to put themselves where I wanted them. Both things that could be put down to getting older, or less fit, as well as to the MS. Sometimes, I would break into a walk, maybe to pass the time of day with the ladies. Then one morning, returning past the flats, I tripped and fell.
Propping myself up against some railings, I sat on the pavement and took stock. Indignantly, I examined the paving. I had read stories about people suing councils, accusing them of responsibility for sidewalk mishaps. A few steps back I could see where I must have caught my toe. One of the slabs was slightly raised. But only slightly. Even in my state of shock, I reasoned that the case would not stand up. “A middle-aged man with MS, your Honour, is bound to drag his feet !”
I had grazed knees, and my left hand hurt. I examined it. One finger protruded from the others at an odd angle. Heaving myself upright, I walked up the road to the paper shop, got the paper, and showed my finger to the Indian owner, Sachi. There were soon several of her family gathered round, proffering advice. Sachi’s husband came in. He was shaping up to shove the finger back in place. I declined the offer, thanked them, and ran away – probably walked, actually.
Once I was home, I called my wife. I must have sounded shaky.
“Is anything the matter?”
“I was out for a run and I think I’ve broken my finger”
“How did you do that?” she asked incredulously.
But then she stopped asking questions because I had dissolved into tears. It was like telling my mother I had fallen off my bike and grazed my knee. The shock had got to me. It remained a shock when I occasionally fell over, but this was the first time. Trish no longer asks me how. She knows.
A minicab took me round to King’s College Hospital A&E. I was admitted straight away. I was shocked again. The ward was full of old men puffing away at cigarettes. Apparently, in that period of history the idea was that it kept them calm. But what about the other patients? What about me? What about the nurses? Trish turned up with provisions. She was shocked by the smokers too. Happily, she had brought a radio, and so I could avoid both the inanities of ‘hospital radio’ and what seemed the interminable wait for an operating theatre slot (no ‘modernisation’ in those Thatcherite days). They came for me at 10pm. At 10 the next morning Trish was escorting me to the main exit. A young man stumbled down the stairs into the lobby. I recognised my young surgeon. He had been working all night.
Moving in South London
The fatigue I had first noticed when I was away became more obvious once we had moved to Harborough Road. I could neither stand nor walk for long, even using a stick. The physio told me to contact the wheelchair service. As with all gleaming new toys, the wheelchair, when it arrived, invited me to try it out right away.
There was a superb French delicatessen, run by an avuncular ex-sea captain, at the end of the Street. It would have been pain to walk it. I decided to ride there in my new wheelchair.
The pavement looked bumpy, so I launched into the street. It felt very comfortable not to be standing up, and I was encouraged by my first push. But soon I ran down the natural slope of the road into the gutter. Pushing myself back up the camber I found that I could make stately if hazardous progress along the centre of the road; but uh-oh: anything - maybe a road repair - could easily put me off-line and down I went back into the gutter on one side of the street or the other. I returned home exhausted, but with a bag full of croissants and with increased respect for those parathletes you see on televised track events.
It was around this time that I was given another salutary lesson in disability. I had naturally progressed from using one to two walking sticks, and was grateful for the extra balance provided and for the fact that many people gave me due consideration as a disabled person, but I had not physically realised exactly what this meant until I decided to post a letter. There were postboxes at each end of our street and so naturally, I selected the nearest and set out on foot. Subconsciously, I had always thought that I could walk to the end of the street. I now learned that I could not. I was shocked. Of course, I could easily get someone else to post the letters, but, like my first few weeks at work, it was a rite of passage. Or rather, of no passage. With the diagnosis, and arriving as an apprentice in the disability field, I had recognised my disability conceptually, rationally and politically, but now I felt it physically, and that translated into another aspect of the concept: I began to feel it emotionally.
The wheelchair, however, was soon put to use, in particular for shopping and looking. By this time, shops had become a pain on foot. I no longer even tried to enter my favourite Shrubbery Row bric-a-brac antique shop. Streatham High Street clothes shops always used to tempt me in to look for shirts or jeans. Now, if I went in at all, I grabbed the nearest rail to hold onto and chose something nearby. After I had come home with fairly inappropriate garments (I remember a pair of tartan jeans that looked good enough in the shop) a couple of times, out of sympathy for my wife and friends, I stopped browsing.
With the wheelchair, there was no problem. In fact, I developed a liking for shopping malls, which I had previously shunned as downmarket. Picture galleries became a joy once more. The Turner Galleries at the Tate were revisited with an increased relish for the huge, spacious rooms combined with the depth of light and colour on canvas. I feel an almost euphoric sense of calm there, only matched by visits to concerts, which often take me back to sublime days in the fifth row of the second violins in the school orchestra.
Oddly, something that I previously regarded as an imposition became a pleasure. With alacrity I volunteered for supermarket shopping. I would load the wheelchair into the car, park in the wheelchair users’ space at Sainsbury's, wheel to the entrance, attach a special trolley to myself and enjoy viewing the plethora of goods and shoppers on show. Of course, it was still a nuisance if they had moved the Loyd Grossman pasta sauces to a different aisle, but now I didn't mind going back. After all, I might find another delicacy on the way. Contrast that to my previous dismay on finding that I had to walk back the length of the store to find something. Smug or what?
I was reminded of one of the interviews I had done for London Disability News. I had gone to see one of the GLAD stalwarts, a woman who I was told was a veteran campaigner for accessible transport for disabled people. I was experienced enough by then not to concentrate too much on how or why she had become a wheelchair user. I asked her about her professional life, and found that she was a medic and in particular, a nutritionist. This intrigued me. How had she jumped from nutrition to transport? "It's simple really," she said. "I was working with disabled people, and their carers or the institutions in which they lived weren't getting them the food that they wanted or needed. Far better that they went to the shops and chose the food for themselves. Getting about would give them some independence too."
I could see what was coming. "So they needed transport to the get them there." This redoubtable woman had therefore campaigned in the LCC, GLC, and anywhere else she could for accessible transport. I had already reported on the campaign for LDN. It had now taken the form of direct action in which disabled people, in wheelchairs or not, positioned themselves in front of the inaccessible buses. Of course, it was not difficult in London traffic jams to do this. Sometimes they chained themselves to the vehicles to make the point. The direct action movement mushroomed from there. It took me back to my days as a student 'revolutionary'. Now, as a journalist within the disability movement, it gave me some satisfaction to be part of it.
The manually-operated wheelchair design, which hasn't changed much over the last century, is still very useful to me on flat surfaces, that is, or in places that my power-chair cannot penetrate because of steps or stairs. But my manually-powered attempt to reach the end of Harborough Road had been a real 'Mrs Armitage' moment. With my young son I had been reading Quentin Blake’s stories about Mrs Armitage. In them she pragmatically keeps adding equipment to, say, a bicycle -- with the words “What this bicycle needs is: a seat for my dog" (when the dog tires of following); “a sail” (when she gets tired of pedalling) and so forth. Once getting around, even in the house, became a problem, I told myself “What someone in my situation needs, is something along the lines of the powerchair I used to see in use by my colleague, Brenda, as she defiantly sped to work through Brixton.”
As I describe elsewhere, the employment service fortuitously provided the answer: part payment for a ramp at the entrance to the house, and a power-chair that I could use for work, including getting to the post box, which, happily again, was right outside the French delicatessen. I'm not sure whether the pastries I purchased there were exactly what my Department of Employment assessor had in mind, but they certainly did my morale a power of good.
Soon after the new powerchair was delivered, intoxicated with its manoeuvrability, and bypassing my new ramp, I unintentionally drove it backwards down the flight of steps beside. Happily I picked myself up, dusted myself off, and started all over again.
Pleased with my new-found mobility, I invited a friend to go out with me to a local Indian restaurant. Not yet depending entirely on the powerchair to move around, I decided to leave it outside and walk in with my sticks. I was soon given a negative lesson in my generally trusting attitude towards the citizens of Streatham. My dinner companion glanced out of the window and saw somebody making off with the powerchair! Luckily, the thief was a prejudiced type, and clearly did not care to be seen using the powerchair himself. And so he was trying to drive it by walking alongside. Not an easy task. My friend Liz caught up with him and remonstrated. He claimed that he thought that it had been abandoned, and that it would be very useful for his little boy to roll around in.
Well into my job publishing a newsletter for the Greater London Association of Disabled People, a volunteer, Lottie came into the office. It turned out that, like me she had MS; she seemed to share my level of mobility.
She was a pretty young Afro-Caribbean woman – always ready with a joke about our situation: “What was I doing the last time? Of course it wasn’t the very last time. Here I am again!”
Lottie wanted to get involved with journalism, and helped on the newsletter. We were working on a protracted story brought to us by a mother who could not get her depressed daughter’s doctor to prescribe medication for the girl, Emma.
We agreed that she should try to contact Emma. "I know the kind of thing" Lottie said, "maybe this girl wants to make her own decisions for herself. This is an eighteen-year-old after all. Sounds like she's being patronised." So Lottie went as an official GLAD volunteer to see Emma.
Lottie missed a week every now and then. She told me she was periodically admitted to hospital for steroid treatment to stem relapses. After one long absence, I asked our volunteer programme manager where she was. “Hadn’t you heard? I’m sorry”, she said. “She died of a heart attack”.
I couldn’t help wondering whether her heart just could not withstand the shocks of coming on and off high doses of steroids. The funeral was a few days later, in Hackney.
Friends and family had been delivered a shock too. A vibrant, funny young woman had suddenly left them. “But”, I reflected, “at least she made us happier”. Some time afterwards I heard that Emma had left home. Maybe that was another of Lottie's legacies.