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Why I've stopped reading about illness

@amsut
Why I've stopped reading about illness

Harmful intrusions are of three types. One is the alien object. Disease is attributed to the presence in the body of a bit of bone, a hair, a pebble, a splinter of wood, or even small animals... These things, which obviously do not belong in the body, induce sickness. Yet not all people holding such a concept insist that the bone or splinter of wood is itself pathogenic; rather, they see the object as containing a spiritual essence which is the true instigator of disorder. The primitive mind seems to treat the disease-causing object as spirit in tangible form. Cure is effected by extracting it. (Tuan, Landscapes of Fear, 1980, 89)

Multiple Sclerosis (MS) is a chronic disease in which the immune system mistakenly recognises myelin – a fatty, protective sheath surrounding nerve fibres – as a pathogen. Without warning, the myelin is destroyed by immune cells, and signals that the brain tries to send around the body become interrupted and broken, causing intense physiological symptoms directly linked to which part of the nervous system has been attacked. The body’s defences systematically remove invisible bits of bone, hairs, and pebbles from the nervous system, until there’s nothing left.

Imaging:

MRI whole spine

Findings: There are multiple lesions POTHOLES within the cervical and upper thoracic spinal cord which demonstrate high T2-weighted signal and are associated with cord expansion. Within these lesions LANDMINES there are three small foci  of abnormal contrast enhancement.

MRI Head

Findings: The FLAIR imaging demonstrates numerous small foci FRAYED WIRES of abnormal high signal throughout the white matter of both cerebral hemispheres, with several in a periventricular location. There are further lesions BURNT BRIDGES within the cerebellar peduncles bilaterally and within the upper cervical spine. None of these lesions demonstrate any contrast enhancement.

An MS diagnosis infuses thoughts of the future with what-ifs and when-wills; the statistical timer is always there, counting down to the disintegration of ability. The awareness of illness lingers in residual physical and cognitive impairment like the smell of garlic trapped under fingernails, a bittersweet reminder that your condition may be stable now, but it could all change at any moment.  

The body’s integrity is the foundation for our sense of order and wholeness. When we sicken, so it seems does the world. When we close our eyes and die, the world too enters oblivion. The body is our most intimate cosmos, a system whose harmony is felt rather than merely perceived with the mind. Threaten the body, and our whole being revolts. (Tuan 1980, 87)

The creeping awareness that your body will never be the same summons the same emotional response as grief; the insidious loss of agency over movement and cognition feels like a betrayal, like something has been snatched from beneath you, like someone you love has gone, and is never coming back.

you give up, you give in, you stand up

The act of standing up begins in thought. It’s an intentional shift from despair to hope; an active decision to not give up, to not give in, but instead to stand up. Two weeks into a major relapse, I barely had the strength to turn over in bed. I hadn’t slept in four days, had barely eaten in five. My toes were rigid, frozen in searing, paralysing, cramping pain, as if within them all of my anguish had pooled and collected. So I stared at them, peering, diffident, from beneath the hospital blanket – a distinctive shade of blue that can only be associated with sickness – unconsciously embodying The Bride in Tarantino’s Kill Bill as I commanded: “wiggle your big toe”.

wiggle your big toe.

In relapsing MS, the brain, when told to complete an action enough times, begins to track new routes across its nerve network. It avoids the potholes, following new, quicker conduits to reach its destination. Meanwhile, it rebuilds the damaged myelin sheath as best as it can, patching it up with a layer of tarmac that may not last forever, but smooths the surface just enough to ensure that tyres don’t get punctured for a while. This process can take weeks, months, even years. The combination of determined instruction and bodily reparation eventually allowed me to wiggle my big toe, then all five toes, then my entire foot. I stood up.

In the 1950s, mutants were portrayed in Gojira, Them!, and This Island Earth as monstrous, cataclysmic, and apocalyptic creatures. Now, when we think of mutants, we think of X-Men, Wolverine, Deadpool, The Boys. Superheroes: masculine; powerful. Multiple Sclerosis is often associated with weakness, but I have been braced by a strength, perseverance, and resilience I didn’t know that I had. MS is not a superpower, nor a gift of the supernatural, but it has changed me, in many ways, for the better.

But, it’s still new, I’m still (semi) in denial, I’m still coming to the difficult realisation that this may be as good as I’m ever going to feel. The cyclothymic nature of psychologically navigating an unpredictable illness – turbulent and tempestuous - is easier to accept in the understanding that the very structure of the brain is being altered. My changeable moods, in many ways, reflect the physical symptoms I experience daily;  fatigue, numbness, heightened-sensitivity, tingling, prickling, buzzing. My brain has changed, my body has mutated, and I need to learn how to embody my new form.

About a month ago, I started a new job as a bookseller. Day in, day out, I see new books come in, old books get shuffled to the bottoms of shelves, classics proudly cloth-bound and presented at eye level. Amongst all of these books - much, I expect, due to Covid - are those about being ill. I’ve bought a few; Ill Feelings, On Being Ill, Frida Kahlo And My Left Leg, Glittering A Turd, and the like. Amongst the new releases on one of the bookshop tables was Unwell Women: A History of Medicine in a Man-Made World by Elinor Gleghorn. I picked it up eagerly, initially excited by its blurb:

In Unwell Women Elinor Cleghorn unpacks the roots of the perpetual misunderstanding, mystification and misdiagnosis of women's bodies, and traces the journey from the 'wandering womb' of ancient Greece, the rise of witch trials in Medieval Europe, through the dawn of Hysteria, to modern day understandings of autoimmune diseases, the menopause and conditions like endometriosis.

Packed with character studies of women who have suffered, challenged and rewritten medical orthodoxy - and drawing on her own experience of un-diagnosed Lupus disease - this is a ground-breaking and timely expose of the medical world and woman's place within it.

My MS was first misdiagnosed as a Vitamin B12 deficiency (even though my blood tests had returned as normal), then as anxiety, or a panic attack (read: hysteria). The spinal doctor who eventually examined me rolled his eyes when I told him that my regular medications included Citalopram and Diazepam. I could have written this book. And that’s exactly why I don’t want to read it.

Being diagnosed with a progressive and incurable illness is hard. Medical professionals deliver this news every day, multiple times a day, to multiple people. They are desensitised to the profundity of it all; the complete rupturing of the self that happens instantaneously when you are informed that your brain is being dissolved by your own immune system. The disgust, the anger. Doctors, neurologists, consultants: they deliver facts. They don’t tell you the ins and outs of MS; how it will fluctuate day to day, how it will affect your relationships, and how it will affect your mental health. They talk about treatments and they talk about the likelihood of progression. That’s it. It’s cold and it’s clinical and it’s, yes, masculine.

The only time where I feel genuinely normal (“normal”) is when I’m lying down, and reading. I need to be motionless, I need silence, and I need escapism. I don’t want to read about illness. I thought that I would; I thought I’d want to read stories which are similar to mine, and feel a certain sense of solidarity with other women, like I was being held. But, apparently not. I did enough reading about other people’s traumatic medical experiences on Google following my diagnosis, whilst I was still processing my own.

It takes a lot of strength to stand up every day, and get through it. Sometimes, it’s enough to just do that. So, the small pile of books about illness will wait, until I’m further down the line. It could be months, it could be years, but, for now, I’m happier reading as a way to escape the uncertainty of my future, rather than confirm my fears.

About the author

@amsut

I'm a Glasgow-based writer, artist and bookseller. I co-run an independent publishing press and have a particular interest in creative non-fiction.