This is an extract from my work in progress “anti-memoir” which examines my experience of living with an invisible chronic illness, and the process of remembrance when that illness affects one’s memory.
It was published by Postscript Magazine in their SICK issue in September 2021.
I am confined to a room, sometimes to the bed.
There is no future, but one imagined. No present, but one dreamt. No past, but one recalled, refashioned, repackaged, relived. Reeled in from a distant shore and hauled, spluttering, gasping for breath, on the barren land of my bed.
Three weeks ago, I felt better. I had rested and taken my tablets. My muscles stretched and bounced back again; they did not crack and shatter into pieces. I went for a walk. Just downstairs. Down and back up again. That was enough. More than enough. I needed to rest for the next two days. Then I tried it again. I went so far as opening the front door. I took a sniff of outside air, of blessed car fumes, joyous wheelie bins piled high with recycling, of glorious silvery rain in the air, of rough-and-tumble winds from the east.
I looked up and saw the sky and it did not hurt my eyes. I smiled. It cracked my jaw and shattered my cheeks. The first upward turn in a long time. I kept smiling, forcing my mouth skywards to see what it felt like. It hurt, but in a good way. My smile reached my eyes and plucked out a tear which splintered my face. I raised a hand to feel its hot salt upon my skin. But slowly, carefully, movement is the enemy, the bringer of pain. I reached up, I touched it, I tasted it. It felt good.
Then I turned back. I climbed slowly, hands over feet, one at a time, resting, breathing, until I reached my rooftop lair again. My lookout, my eagles’ nest, my place of unrest. Then I did nothing, could do nothing, for the rest of the day.
And the day after that.
The day after that, I was impatient, hungry for more. Anxious to feel me again. I went down and out and across six streets – slowly, carefully, movement brings pain – to what would be my final resting place: the public library.
At first, I sit in the children’s section on a small wooden toy elephant. It is red. I’m not sure I approve of teaching untruths about the natural world to four-year olds. They will get enough of that when they are older. Though by then, elephants will only exist in books and as faded red-painted wooden kiddie-sits in faded grey libraries. Though by the time these toddlers are my age, libraries will have gone the way of the elephants. Both bludgeoned to extinction.
The toddlers within my bloodshot eyeshot walk as I do. Slowly, carefully, testing their limbs. Uncoordinated, swinging loosely on hips, arms out, steadying their progress. They fall frequently. I too trip, stumble over myself, my own body getting in the way. They get up quickly, laughing at the absurdity of this thing called life. I do not.
I am asked to move. By a young man I have not seen before. Although, as this is my first visit here in many, many months, this is hardly surprising. I should not be sitting in the children’s section, since I am not a child and I do not have children. How does he know? I wonder. I might have children. I might have had. May still do, who knows? In another lifetime, a different body, these bones could have borne fruit.
I have to move, to get up, to shift myself. Extricate my body from the seat of the elephant (oh, how colonial). But I cannot. I am stuck. I consider, for a moment, asking him to help me up, but I do not. It will seem strange. I am perhaps 20 years older than him but look a lot less. Thin, boyish, bespectacled, the few grey hairs unnoticeable except in a spotlight. And I am in the spotlight now. Shamed in the children’s section. As if a predator, a psychopath, a pedophile.
But no, just a bibliophile with chronic fatigue.
Help me, help me, I cry, to the sun and the moon and the hard-backed picture book stars. Rescue me, Asterix and Tintin, O Elves of Lothlórien, Jo March, Huck Finn, and Mrs Frisby. Tyke Tiler, I need you now.
I take books. As many as I can carry. More, much more, than I can carry, since one at a time is the only comfortable, sensible, approach. But who knows when I will make it here again?
Indeed, I have not returned.
The books are now long overdue. I have read them all, slowly. Light hurts my eyes. Words hurt my brain. Black marks on paper swim before me, blur and merge into one scribbled- scrabbled mess and the migraine machine cranks open its doors to hell again.
A library is not merely a place for carrying out the transaction of borrowing a book for an allotted period of time. It is a public service. More than that, it is a place of respite, of refuge and reverence. It is somewhere you can just be. In public. Where you can sit without being moved on (unless you choose to sit on a red wooden elephant in the children’s section, sans child). Where you can be silent in company and make polite understated conversation should you wish to. Not, if you don’t. It is a sanctuary. And it bestows upon me the same sense of awe and gratitude as sitting in an art gallery, contemplating the way figures of colour on the wall shape my emotions, or walking around a cathedral, marvelling at its majesty, moving my spirit with its brick and buttress, stained glass and smoking candle.
It is a means of escape, however fleeting, from the ever-growing gloam of loneliness, surrounded by the warm, worn offerings of words, placed reverently on shelves.
But this is my story, back to front. Not backwards. More sidewards. Inside out. Out of sorts. Skin peeled back to show my inner workings.
The workings out, the crossings out, the underlinings and the asterisks top and tailing secret paths leading to future paras. Muddy footprints on a just-washed floor. Better the messy stage than the empty page.
I need to distance myself. From everything. But most of all from myself. I need to be set free, to sever body from mind, brain from this bunch of useless dragangling limbs.
If I could transplant my consciousness, transport my mind into another being. One that is free. One that can move without pain. Perhaps a tree? It would be peaceful to remain rooted, secure in one spot, and to allow time and space to move around you. This would be far less tiring. All this back and forth, to and fro, constant, every day. It’s so very pointless. Without purpose. Meaning. Less than.
Tiny creets are eating at my feet. Ants. Flesh-eating spiders. Bedroaches. I jerk them away. Pins and needles and pointy things. Stabby things, scritching from the inside out.
I’m itchy. Itchy all the time. It started as a slight trickle at the back of my neck, like a hair trapped inside one’s clothes, that no manner of reaching and stretching and flailing could retrieve and discard. Then my head. Itching. As if the ghosts of childhood nits had come back to haunt.
My skull, my skin, my sides, my eyeballs. All itching. Constantly.
Electricity runs through my veins at night, causing my muscles to cramp. My arms and legs are twitchy and sore, skin and hair itchy and raw.
Pain keeps me awake. And being awake (being alive) keeps me in pain.
I slip a hand under my breast. There, under my ribs, my heart pulses like a star trapped beneath the waves. Flutters and skips like a butterfly. I shall set it free from this aching body, this twisted cage. One day.
The light pervades past my eye mask and shuttered eyelids. I turn it off. Again and again. But still it bleaches through.
I am, to all extents and purposes, an ordinary person. But therein lies the rub. An ordinary person with a dis-ordinary disorderly disease. An illness, a condition, a set of symptoms. Who knows? If the doctors can’t decide what to call it, how do we? We, these people struck down by this mysterious maligned misunderstood mess of disorders and disabilities. I am dis-eased by it all.
I miss my former selves, mourn for my other self. The one that does all the things I thought of, dreamt of, still do dream, occasionally, when I’m feeling optimistic. This happens less and less. Less than.
The room in which I write these words is not a bare, white antiseptic care home or a hospital or spa. If I was monied or came from a “good family”, one such as they write about in books, then I might be in a sanatorium. Gaining health by breathing sea air, with actual visits from an actual doctor. This is not the case.
I had to move out of my home when my last girlfriend left me. Last? Probably. Certainly, if I do not improve sufficiently to leave the flat again.
I could not afford the rent on my own. And I was still earning then. Now, I am living off my savings, what little there is left of them. I will have to find a way to work once I can stand up again. There are sickness benefits of course, in theory, but applying for them requires more effort than most jobs. And I have an “invisible illness.” This does not go down well at the benefits office.
I put my life into boxes. My self into storage. My guitar, my books, my records. Hopes and dreams, my plans and career. My broken body and human being.
Are you going travelling? The man at the storage unit asked.
Kind of, I replied.
I have transported myself – fleetingly, temporarily – to Edinburgh. Like a fictional character, I wake and find myself in a new city, with seagulls creaking me awake, the morning not yet broken. The Firth stirring, bracing itself. The Forth flowing freely. The Bridge glowing in the not-yet light.
Consider the fish. They do not sleep. They are forever moving, darting this way and that. Their tears fill up the oceans.
Seagulls caw-cawing, spattering the air with their childish cries and spray gun birdshit. Horses paw-pawing, clattering the earth with hoof against sod, bone against stone, gnawing the fence to sharpen their teeth for their knowing neighing neighborly smiles.
Inside, the room is so still I have to will myself to invent the existence of air, to dream of a breeze upon my back, caressing my calves and kissing my neck.
I bathe in the near silence. The not-quite quietness. The faint shouts of Sunday morning footballers, the hello bark of a distant dog, the slight creak and grind of a cyclist passing by. Sometimes I watch life go by from the window. Watch the passersby. The simple act of a half-smile, a barely perceptible nod, a mumbled thanks brings tears to my eyes. The sheer humanity of it all.
Outside, the trees whistle to the wind; they are ready, the time has come. Sorrowful sap has dripped through their roots for a thousand years. Below, a cavernous vat of bile and acid is ready to rise up and cleanse the face of the earth.
I listen to the sounds of nature green and blue in brute force fury, ready to strike vengeance upon the earth, upon us, the parasitical insects that exploit it.
I’ve had many rooms and several lovers. Twice as many rooms as lovers, and double figures for both. This is not a boast, merely a fact. Something to remember and look back on. I equate the two because a room or house is not just a place, and a lover is not just a person. It is a moment in time. A moment in life. A set of feelings and thoughts, of hopes and dreams, hairstyles and shoes. The music I was listening to at the time, the friends I hung out with. What I was drinking. How well I was at the time. Was I mainly inside or out? Of rooms and of lovers.
I am seeing things again. Black shapes moving, darting in corners. A quick flash of something indiscernible, undisclosed. Mice. Rats. Spiders. Snakes. Something mammalian or insectoid, something untoward, unpleasant. Something just out of reach but which I do not wish to touch. This has happened before, many years ago. The DTs.
The shakes, the sickness, the memory loss, the muscle wasting, the sheer uncontrollable plunging dizziness of it all. It is much the same as now. But without the succor of liquor.
My eyes glaze over. My fingers flicker feverishly. I cannot grip things. The centre cannot hold; things fall apart.
I cannot hold it. I cannot hold the book in my hand nor the words in my head. The book, though only a paperback, is too heavy, it aches my wrists, my hands, my arms. There is a solution for this, at least. I can position it, just so that I look down upon it, with no need to hold it up to my eyes.
But my eyes cannot hold the words in their mirrorballs. They blur and diffuse and confuse, one line piling on top of another. Merging and converging, criss-crossing across the page. Even when I concentrate and fix them enough to complete a sentence, my mind cannot hold that either. The meaning slips, I lose grasp, and the words are lost, spilt on the floor. And it is far too much effort to stoop down and gather them together again.
The one thing I love most, the one thing that doesn’t require money or friends or a new deal for energy, I can no longer do. I cannot hold my self together much longer.
A good day is when I can read a little. A bad day is when even that is too much. A really good day is when I can write a little. Those rare and cherished moments of sanity and clarity. But mostly my arms and wrists ache too much to hold a pen. My head hurts too much to concentrate on putting one word in front of the other, either as written or read. Like one foot in front of the other, it is an often insurmountable effort. But when I can, I do. It is a reward for good behavior, for forcing myself to rest, to do nothing but lie supine, awake and wasting, bored on my bed of broken dreams.
This is not my beautiful house. This is not my beautiful life.
I fluctuate between hot and cold, pain and numbness, shaking and shivering. My heart races ahead or skips beats. I oscillate between madness and sanity. Sometimes there are full stretches of almost an hour of clean, calm serenity. And then, suddenly, such devastating intense hatred and horror and hurt that I want to throw myself against the wall, down the stairs, out the window. Smashing my head against bricks and slashing my wrists upon knives, sharpened with the fullness of knowledge of what this illness does to me.
But death is not heroic. It is an escape, a get out, an act of cowardice. Life is heroic. Living every single aching day the best that you can, hauling oneself through the world, with every stuttering stultifying attempt to breathe, breed and be socially acceptable. That is fucking heroic.