‘In 90% of cases, the patient tells you the diagnosis before you even lay a hand on them.’
This was the figure mentioned time and again by my favourite lecturer at medical school - a consultant well past retirement age whose teaching mainly involved stories about golf.
The idea that the story reveals the diagnosis is bandied around so frequently in medical education that it has become something of a cliché. The exact number quoted varies depending on the tutor - some say 75%, others 80% - but the idea is still the same. Listen to the patient. The description matters.
Multiple sclerosis (MS) - a chronic and sometimes devastating neurological condition with a wide range of symptoms - is a great example of this. The effects of the disease are so unusual that sufferers often have little choice but to be poetic: electric shocks, the sensation of unseen water running over the body, the MS hug, and extremities I’ve heard described as everything from ‘blocks of ice’ to ‘a tree, with roots nailed into the ground’. Even doctors aren’t immune: the classical exhortation to look for ‘lesions disseminated in time and space’ is otherworldly in its own way.
This week’s title is drawn from one of the first descriptions of the disease’s characteristic lesions in the central nervous system by pathologist and illustrator Robert Carswell (1793-1857): ‘a remarkable lesion of the spinal cord accompanied with atrophy’.
Poem
In Multiple Sclerosis, poet and MS sufferer Cynthia Huntington relates the struggle of accepting and using the name of a disease that has so many different facets, and which has such distressing effects:
For ten years I would not say the name.
I said: episode. Said: setback, incident,
exacerbation—anything but be specific
in the way this is specific, not a theory
or description, but a diagnosis.
I said: muscle, weakness, numbness, fatigue.
I said vertigo, neuritis, lesion, spasm.
Remission. Progression. Recurrence. Deficit.
But the name, the ugly sound of it, I refused.
There are two words. The last one means: scarring.
It means what grows hard, and cannot be repaired.
The first one means: repeating, or myriad,
consisting of many parts, increasing in number,
happening over and over, without end.
In Meds, she further explores the condition from a sufferer’s perspective:
There’s a knife stabbed through my left eye.
My right foot is made of elephant hide
and weighs in at roughly one cartload of potatoes.
Oxygen twenty-four hours; I’m swelled with steroids,
prednisone buzz in the brain; a motel room
with sixteen foreign workers sleeping in shifts,
playing reggae at three a.m.
You can read more about Huntington’s life and experiences with MS here.
Essay
In “‘I am the poet and, too, the poem’- Language and Multiple Sclerosis”, Scarlett Ward ponders the cruelty and strangeness of the disorder’s autoimmune aetiology:
Multiple Sclerosis is not a pathogen or a bacteria; it is almost tempting to describe it as a delirium of state that my own blood cells exist in. They mistakenly identify my brain and spinal cord as attackers. There is no external 'other' I can point to; I am a child with a biro pen defacing my bedroom walls. (I am the bedroom wall. I am the ink-stained fingers. I am the parent who shouts, 'look what you have done to yourself!') My delusional blood cells eat away at the fatty protective layer coating the nerves in my brain, and I try not to think about the parts of me that it digests in its feast. It makes me think about how much I get to keep of myself and how much I will inevitably lose. But it is also comforting to think that if I am ‘eating’ myself, then I’m subject to no real loss. (Undeniably, MS is a thief of many things, but I am both the thief and the mark.) It was easy to go to battle with warfare vocabulary upon first being diagnosed, but now I stumble upon a deeper insidiousness in recognizing that although I am not defined by it, I am my MS; my MS is me. Or is that less sinister and more of a comfort? Or both? We butt up against another contradiction; chronic illness is full of them.
Read the full piece here.
Narrative
In Hardy Animal - an unflinching portrait of life with MS - MJ Hyland talks about her MS diagnosis, short taxi rides and ‘the pit’.
A few weeks after I was diagnosed with multiple sclerosis, I made a pact with dying. I wrote draft suicide notes and planned my ‘exit’; not because I’d lost a chunk of my physical usefulness – most days, I can’t walk more than 200 metres and can’t use my right hand for more than a few hours – but because it turns out I’m the worst kind of candidate for an illness like MS.
I thought I was invincible. I’d never needed anybody’s help, hadn’t needed somebody to carry my suitcase down the stairs, or take out the bins. I didn’t bind well to the idea of dependency, to walking sticks and stairlifts. So I made plans: when it looked like a wheelchair might be wanted, I’d pay my debts, write a will and some letters, find a home for my cat, take what was left of my cash and book into the Ritz in New York for a couple of weeks.
I’d have a nice time and live out the kind of fantasy I’d had when I was a kid living in Ballymun, Dublin’s pissy, high-rise council estate. I’d fly first class, wear a chic suit, the masculine kind, pinstriped, with tall black boots (if I could walk at all). I’d eat fancy food and smoke in the hotel room, find a casino and play a few high-stakes poker tournaments, take a helicopter ride over the Hudson, rent an MGB convertible and then, when all the fun was done, I’d get into the king-size bed and do what’s needed with an ‘Exit Bag’ (a plastic bag with a drawstring filled with an inert gas, such as helium or nitrogen).
That was 2008, nearly four years ago, and I’ve mostly got used to my cut-in-half life. But sometimes I still wake – when it’s neither dark nor day – my chest covered in sweat, and words like these beating at the walls of me: ‘I’m on the way out. I don’t want to be on the way out,’ and, in the trap and trip of the weak hours, it’s as though my body knows more than I do. On 4 June 2008, the day a neurologist told me I have MS, I wasn’t at all sure what he meant. I’d seen some public service announcements on Australian TV which featured people in wheelchairs; people with spitty speech impairments, water-clogged mouths, curled hands with sharp, pointed bones. So, I knew that MS could cut your legs off, put you in a wheelchair, but not much else.
The neurologist showed me the MRI scan and the lesions in my brain; the scars, the permanent neuronal damage which means I’ve got spasticity and weakness in my right foot, and my right hand (my writing hand).
‘On average,’ the neurologist said, ‘it’s at least ten to fifteen years before you need a wheelchair.’
Read the full article at Granta.
Art
This article explores the work of artists Kirsty Stevens and Hannah Laycock, both of whom have drawn inspiration from their MS.