How I Tamed Black Shuck
Or why getting a chronic illness isn’t always the end of your life
Don't interpret being ill. Being ill is just being ill. Don't invest
it with all these myths and fantasies....
(Against Postmodernism – A Conversation with Susan Sontag)
It was the ghost of my life, the shadow that had followed me, haunted me, a cruel trickster, a dark stranger.
Like ‘Black Shuck’, mythical, wild, black dog of East Anglia, whining and growling at my back, taking a nip at my heels. It finally caught up with me in Norwich Cathedral in 2002.
The music of Thomas Tallis was winding its way around the audience and my eyes had fixed on the stained-glass opposite. The figures in this seemed to split apart and move aside. As the singer’s voices flew ever higher, my eyes could not blink the stained glass back to normal. By the end of the evening they were two and so was the rest of the world. Everything I saw was working in duplicate.
Double vision sounds terrible. Like a Grecian curse. Actually, as curses go, it’s not all bad. I watched the whole of the film, ‘The Royal Tenenbaums’, with all the actors walking and talking as twins. Gwyneth Paltrow would never be so compelling again.
Cycling was more difficult. The road and the pavement crisscrossed each other with neither being the material truth. It was safer to walk. In a car, my eyes made roads come together and then miraculously part like biblical seas. Fortunately, I was never the driver at such miracles.
You won’t believe your eyes! shout adverts selling cut price merchandise. With diplopia, the medical term for double vision, you can’t believe your eyes. You find yourself reaching for things that aren’t there. Everything has shifted, moved an inch to the left, or the right, or somewhere else entirely. Truth was in question all the time. Talking to people made me feel shifty. I couldn’t meet their eyes because they had too many. The link that sighted people take for granted, eye contact, has been lost and with it, the sense of trust that looking into someone’s eyes can give. Fortunately, my eyes slowly got better, but the fear of it happening again remains.
I felt a cleavage in my mind
As if my brain had split;
I tried to match it, seam by seam,
But could not make it fit.
(Emily Dickinson)
‘Follow my finger.’
I’ve been asked to do this so many times. By opticians, by doctors, by consultants, by specialists. The trick is not to ask why. Or to move your head.
On that day in 2002, it was the turn of a cheerful young Irish optometrist to ask me. I’d already done the other tests involving lights and screens and black and white picture cards. This was the final stop on the road to diagnosis. She watched my reactions, did the math and nodded gravely. ‘There’s nothing wrong with your eyes.’ That sounded encouraging. I smiled. She still looked grave, ‘That means the problem is here.’ She moved her fingers up to tap her head. ‘In your brain. Which means either a brain tumor or multiple sclerosis.’
I should have been shocked, surprised, even mildly upset. But I wasn’t. It was all making too much sense.
I’m from the Net Doctor generation. I’ve done internet searches on every ache, pain and strange sensation known to woman and probably a fair few known to man as well. This sort of virtual research could create either a medical genius or a hypochondriac. I think the doctors I visited in my seven years in London all came to think of me as belonging to the latter category. I told them all what I thought I had, and they all disagreed. I looked healthy enough. Perhaps.
Just when I think I’m winning
When I’ve broken every door
The ghosts of my life blow wilder than before
(Japan)
Teenagers are invulnerable. Everybody knows that. For myself, in the late 1980’s, I lived on late nights and pot noodles and didn’t see any harm in that. When I got shingles at seventeen, I blamed bad luck. Not because it’s bad luck to get ill. Illness could be cool and romantic. I’d watched enough old films to know that. No, it was bad luck to get shingles. That was an ‘old person’s disease’ and definitely not cool. Like everything, there’s a hierarchy to disease.
Chas was my A-level drama teacher. He was thin and shambolic, with comb-over hair and big glasses. His lurching gait and foot tapping tremor did not inspire dramatic gravitas. However, he must have inspired something, even if it was just a comfortable sense of us all bumbling along together. Our shaky readings of ‘A Midsummer Night’s Dream’ on the sunlit hillside behind the college, or my painfully heartfelt death scene as Minnehaha in Hiawatha, had a gentle, hopeful innocence.
Then Chas left. He had a medical condition. No one could remember its full name, so they all used the short version. Two letters. These meant nothing to me except they matched the first letters of my two middle names: Maria Simone. MS. Beyond that, it was an alien, unknown and unpleasant. On the disease pop charts it probably ranked somewhere lower than gall stones and gout. An old person’s disease, so not of much interest.
But I was the girl who’d got shingles, another old person’s disease, so what did I know?
So tonight I’m gonna party like it’s 1999
(Prince)
She was my housemate. The person next door to me in student residences who sang in the shower and smoked everywhere else.
We danced together, cycled together and debated the sexual politics of her large Mills and Boon collection far into the night.
When she fell off her bike and ended up in hospital, it wasn’t because of broken bones, it was more a broken head.
I visited her after she’d had a lumbar puncture. This is where a large needle is used to tap off some spinal fluid for testing.
‘Did it hurt?’ I’d asked the curled-up body in the hospital bed.
Stupid question.
‘Will it get better?’ This was later. After she’d left hospital and was back on the old drag of late-night television and chain smoking.
‘No, it will probably get worse.’
Later still, on the weekend Diana, Princess of Wales, died and the whole country was in a state of morbid hysteria, I was visiting her parents place in Derbyshire.
‘How do you feel?’
We were out for a country walk. She’d been striding ahead like the lady of the manor that I remembered from University.
‘Fine. Anyway, they’re making new drugs. Five years from now it will be curable.’
That’s good.
Except, here I am, many years later and there’s still no cure.
Last night I dreamt
That somebody loved me
No hope, no harm
Just another false alarm.
(The Smiths)
The millennium had come and gone but some things never change. It was another work leaving do. The upstairs crowd had cleared some tables for drinks and snacks and moved others to make space for the guests. The usual suspects of friends, relations, hangers on and freeloading gatecrashers. Most of these had sloped in once the speeches had died away and more corks had been popped.
‘Why’s he leaving?’
‘Retiring. Early. Medical reasons. He’s got...’ she’s moved closer to me to whisper the dread words. The same words I’d kept hearing over the last twenty years. I still didn’t really know what they meant.
‘Multiple Sclerosis.’
‘Is that bad?’
She’d lowered her eyes. ‘Yes. Very.’
Big swigs of wine followed.
By now the Black Dog was truly at my back. Its heavy paws padding my shoulders, its hot breath on my neck.
I was still walking everywhere but couldn’t ignore how sections of my skin would sometimes seem to fall asleep. Like watching a weather report on television. Moving clouds of numbness would sweep over me, settle for a time and then move on.
Like a nameless lover whose touch came and went. No explanations, no apologies, no cause for concern.
The condition had a name, the kind of name usually associated with telethons, but the name meant nothing, and the neurologist did not like to use it. The name was multiple sclerosis, but the name had no meaning.
(Joan Didion, The White Album)
I was eventually diagnosed in 2002 after the double-vision incident. This was when I finally grabbed the black dog by the neck. I’d had an MRI scan and the photographs of my brain showed clear white spots of inflammation.
The neurologist was calm and friendly. ‘You’ve got Multiple Sclerosis. Sadly, no one knows what causes it, it’s degenerative and can’t be cured.’
People might assume that I would have started crying at this, but instead I laughed. It seemed so ridiculous. I was 29, I’d cycled to the hospital and was wearing some seriously cool tights with my usual Doctor Marten boots. I didn’t look ill! But inside I knew it wasn’t really funny. I had already guessed what my problem was. Why wouldn’t I have? Black Shuck had been chasing me for years.
Since then I’ve done lots of research. I know now that there are certain drugs that can stabilise the condition (I take them) and good eating habits and exercise can help (like they can for everyone!). Also staying positive. It helps me.
As for its name, Multiple Sclerosis is often translated as ‘many scars’. Sclerosis is from the Greek word ‘skleros’ and refers to the scars on the damaged myelin covering of nerves. These scars can multiply throughout the central nervous system as myelin damage increases, hence the word ‘multiple’. Of course, as Joan Didion says (she used to think she suffered from it), the name almost has no meaning. The condition is complicated and different for everyone, so it’s an ever-changing story. Except it is incurable, that part of the narrative is always the same. For now.
Despite this I keep going. My life isn’t defined by my condition. More truthfully, my condition has given my life more definition, rather than the fuzzy mess it was before. It made me realise, time is short – so, get to it!
