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Blog - Nick Lewis

A Journey With My Self: Telling my family

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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.

Watercolour painting of two people sitting on a bench looking out at the sea

Gran and Tricia at Southwold. 1998. Image © Nick Lewis

Not yet being obviously disabled by the MS I imagined that I wouldn’t have to tell all my friends and family. I thought, to begin with anyway, that I would not tell my elderly mother. I realise now that this was silly. I needed her support. Just as my children need my support: although I am disabled. I’m still the same person. She was still my mother, despite nearing 90 years old.

My wife Tio was and always has been kind and encouraging, although every now and again she has to remind me of the limitations of my condition and of the way it affects her. My son and daughter Simon and Zoe,19 and 18 years old, did not panic, although I could imagine their mother Claire, my former wife, being fairly upset.

Zoë came to see me. She had just finished her A-level biology, and so was able to tell me in graphic detail the function of myelin.

“You know your nerves”, she said

“I’m fairly well acquainted with them, yes. They send messages round your body, don’t they? Round your mind too, I should imagine.”

“Let’s leave minds out it for now shall we”, she said, “God knows what you’ve got on yours at the moment”
(She had an idea, not entirely wrong, that in those days my head was like a cartoon strip filled with women who I was chasing.)

She continued her lesson: “Nerves are covered with fatty stuff called myelin. That’s what gets damaged by MS, I think.”

“Thanks Zoë”, I said, “You did a lot better than the consultant”. (She was right. Nerves are covered with a protective layer of myelin, called the myelin sheath, which gets damaged in MS., causing slow or no delivery of messages to and from the central nervous system to various parts of the body).

Simon was just as he always is: his loving self. Fairly soon after the diagnosis, I took the train up to Manchester to see him and my grand-daughter (she and her brother call me Poppy: I chose the name after reading about the beautifully described friendship devised by John Le Carré between his Perfect Spy and his opposite number, codename Poppy.). When we arrived at Piccadilly for the return trip, I found I had forgotten my shoulder-bag. By this time, I was having what some people euphemistically call ‘trouble with the waterworks’.

Simon had worked this out, and asked “Won’t you need it? I’ll go back for it if you want.” I replied, optimistically forgetting my condition, and again like an elderly ‘mustn’t grumble’ kind of person, “No, it’s OK”. Well, it was not OK. Tio as usual was her generous self and rescued a sopping wet, bedraggled Poppy from Euston station, and revived me when I got home.

I had to tell my sisters Kate and Viv. We had dropped Viv back home in Bristol after a family occasion, and we were in her garden. Their looks of shock and distress took me by surprise. I suppose I should have got them to sit down first. I was flattered that they felt the bond between us so strongly.

The other member of my family I had to tell was my Aunt Betty, “Aunt” to the family. She was my mother’s younger sister and she was very dear to me and my sisters. When we were children, she used to come for the weekend laden with preposterous gifts and when we were little she sang to us in our bath. I remember her trilling the frightening song “Poor baby has gone down the plug hole”.

Now, she was the only other member of the family living in London, and I used to visit her in her St George’s Square flat. She had had a minor stroke and had become a sweet little old lady. Tricia loved her too, and together we saw more of her. She had been a catering manageress, and she enjoyed entertaining us in her Pimlico flat. I asked her round to my house in Brixton. While I waited for her, I watched from my first floor bay window. She scuttled up the street in fits and starts checking the houses for their numbers and, I think, for whether she recognised them. At last she turned into my porch, and rang the bell.

She was a little bit fazed by my news, but enjoyed her cup of tea and cake. The next time I saw her, she told me that one of her Australian friends visited London especially to see a homoeopath, who was very well recommended. I did not have much time for homeopathy – after all, can drinking something diluted to a negligible concentration really do you any good? – I preferred stronger stuff. But to humour her, and because I fancied the idea of a trip with Aunt, I agreed to visit Mr Jenkins in Hastings.

We arrived at the Jenkins practice, run from his semi-detached house. An ageing, scruffy hippie dressed in a crumpled shirt and shorts answered the door. Mr Jenkins did not inspire confidence, and nor did his consulting room. This Merlin-like figure had surrounded himself with mounds of tiny bottles of water interspersed with dried- up foliage. We found chairs amongst the detritus and went through the motions of a consultation.

I’m afraid Mr Jenkins believed every word of the fictional story that I wove for him. After all what difference was it going to make if my father had been a circus performer not a businessman, or if in my youth I had suffered from a plague of boils, not an inflamed gut? From his ‘surgery’ bay window I watched an interesting array of mothers bringing their children home from school to identical semis in the street.

Asking himself which of his potions might be best for the nervous system, Jenkins rooted through his pile of bottles. I turned my thoughts again to the display of suburban houses across the road. I was imagining a procession of elderly ladies beating a path to his door from houses like these or from as far away as Sydney, New South Wales, only to be palmed off with a bottle, green or brown depending on the complaint, of the flat water to be taken “one or two drops under the tongue per day” for the placebo effect. I’m sure it was strong. I kept Mr Jenkins’ bottle in my kitchen for a couple of weeks and tried a few drops per day. They did me no harm.

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