When I was little, my skin was nearly white enough for my Chinese family.
‘If you got rid of your freckles you would be so beautiful!’ they would say, whitening cream in hand.
When I was older, my skin seemed far too white – a failed attempt to inherit my mother’s tone, the smooth brown that delights in sunshine and burnishes with ease.
Now I opt out of the hunt for sun, at home in the bioluminescence of my father’s skin.
And yet increasingly I feel disquiet. This pale passport allows me to elude assumptions, it is an all access pass to no questions asked.
And the world doesn’t check the blood running beneath.
My half-blood friends whose dice rolled brown are forever asked where they’re from, forever questioned why they’re here.
I think of those times when they wrenched away children who were ‘white enough’. Those times when you might be less of a dog if your luck ran pale. Those times that seem to be circling back around.
And I hear the ‘Go Home’ howls, see the snarling fever as it spreads.
One day I might be lucky that I’m nearly white enough.
And for the first time, I fear that my family are not.
Or if not magic, then convincingly futuristic sounding “medicine”.
Or if not futuristic medicine, then convincingly ancient sounding “medicine”.
This is the gap that bleeds hope.
It exists in our minds alone. The world gives little care for concepts like ‘unfairness’ or ‘undeserving’.
The world just is. And sometimes we cannot trace our patterns of meaning over its contours.
The gap is vulnerable. It wants to be filled. Like a child it reaches for anything that comes into its vicinity.
And there are always those with a shark’s sense for blood.
They will circle when hope cries out, carefully brewed oil of snake or poisoned apple in hand. They wear a mask of utmost sympathy, and speak with the zeal of one with absolute fact at their back.
And what can hope do but reach for a taste?
Charms, crystals, prayers, herbs, mysterious energy reading machines – just a little more, just a little longer, one more day-month-year. The cure lies just around the corner.
‘Lies’ being the operative word.
The gap hungers, whimpers, so tired of the ache of hoping yet never quite fulfilling.
Yet if we let gods, magic, mysticism, or alternative medicines pass us by, what balm can soothe the gap?
I fill my gap with my own absolute insignificance.
With the scale of this planet, the solar system, the galaxy, the universe. With the incredible statistical feat of my existence. With the duration of my life against the age of the Sun. With the breathtaking beauty of a world that will continue to rotate uncaring and unaware of the motes that scatter its surface.
It is here that I find comfort. Meaning in the absolute meaningless of space. For all that humanity builds or destroys, our wars, our discoveries, our loves and joys, those we laud or despise, we are but a blink. Everything we know and discover is incredible, and yet utterly insignificant against all that we do not know.
My gap overflows.
And though this may not find cures or solutions, there is a peace that comes with perspective. Yes, I am insignificant. But how wonderful it is to have the capacity to think that thought.
In order to preserve your innocence, Gentle Reader, we’ll add in a 1950s style bathing dress that goes down to the knee, and a balaclava.
I’m bothering to shave my legs for the first time in two weeks, due to their upcoming starring role in A Dress. This is the first attention that my legs have gotten beyond a cursory scrub (I hasten to reassure you, Dear Reader, that I did in fact continue wash during these two weeks), so I’m going through the routine of soak-scrutinise-soap-shave.
I’m not a particularly strong competitor in the hirsute leagues, so two weeks is about enough to make my (very pale) legs look a bit grubby. On closer inspection, I notice a tenacious bit of dirt that doesn’t seem to be follicular in nature.
I splash water. No effect.
I scrub. No effect.
I tug with nails, and voila, success.
Unfortunately, said dirt is wriggling.
Slightly more luckily, I don’t give into my first instinct, which is to dunk my hand in the bath water to wash it off. Instead, the leg dirt is deposited on the side for closer inspection.
A google and a sinking suspicion later, it is confirmed.
It was a tick.
People with a fear of arachnids should really be saving all their animosity for ticks. They’re literally man-eating spiders that burrow their heads into flesh – if they existed on a larger scale, they would be terrorising cinema-goers. I feel like the humble house spider should be appropriately recognised for its decision not to suck out your blood through your skin, or give you a bacterial infection that can be debilitating for life.
The tick might have been a message from the universe telling me to shave my legs more often. In which case, you should have sent that tick along in Winter, mister, that’s when the real growing season takes place.
The universe may instead, of course, be telling me that I should spend the entirety of summer in a wetsuit that covers me from ankle to mid-neck to wrist. I will take this under advisement.
I would also like the universe to note that ‘carrier ticks’ are not going to catch on as a means of communication. My preferred means of contact are by post (pigeon or snail), email or hallucinatory dreamscape.
There is a faint possibility that ticks are an alien species attempting some sort of mind meld with the human race via their blood streams. In this case, I would again ask them to note that I am contactable via email, post, and am entirely abductable if they would like a chat.
I’m happy to note that I didn’t contract Lyme Disease – it’s important to keep an eye out when you’re in a part of the world with ticks. NHS guidance on Lyme Disease and ticks can be found here.
‘I never take pills,’ she says, with a look of constipated pain at the very thought.
We were in the bomb shelter of the GP, walls so plastered in paper notices that it’s beginning to look like a serial killer den.
She chose the seat next to me – ignoring the holy rule that thou shalt always attempt to leave a gap between you and any other occupant (a rule obeyed throughout the land in public toilets and transport services).
She also ignored my headphones and the ‘Vacant’ sign I keep plastered across my forehead when I venture out into the world.
It wasn’t entirely clear why she thought it was a good idea to advocate against pills to someone seeking medical assistance, who would surely statistically be more likely to be taking pills than your average person. Loneliness? Evangelical calling? Verbal diarrhoea?
My non-committal ‘hm’ has no effect.
‘I like to only put natural things in my system, you know what they say -‘ cue gurgling laugh, ‘- you’ve got to treat your body like a temple!’
I feel marginally affronted. I do treat my body like a temple. It’s just one of those temples with giant plates of milk on the floor surrounded by hordes and hordes of rats. Or one of those abandoned ones that’s all dusty statues, cracked floors, and inadvisable man traps.
Oh, and pills. Lots and lots of pills.
I tune back in.
‘… And I get this fantastic health tonic from that Chinese acupuncture place by the station, you know the one?’
I do know the one. It has a real focus in its window displays on curing male genital droop.
‘It tastes foul of course,’ she continues, ‘but it’s just fantastic for skin!’
She runs eager eyes over my face in the hope of finding a skin condition at which to advertise. It’s one of the few times I’m cheerful about the ‘invisible’ part of invisible illness. She bucks back up, undaunted.
‘And it’s all natural of course. No pills. And you know, the Chinese are very smart and wise.’
Ah the sweet, sweet taste of reductionist racism. I find it amusing that traditional Chinese medicine practitioners in China are busy turning liquid medicine into nice white pills in order to increase their reputability. Here, the more eye of newt people can see staring back at them, the better.
‘And I just think that people really shouldn’t take so many! It can’t be good for the body, you know?’
At this point, my tolerance gauge blows a gasket.
I finally turn to look at her and weigh my words.
You don’t take pills because you are well. I’m really pleased for you. That’s really lucky.
People who are not well sometimes have to take pills. Pills can help them manage their illness.
Pills do not generally cause their illness in the first place. Sometimes they have side effects, but these have to be measured against the impact of the illness.
I open my mouth to speak –
– Her name gets called.
‘It’s just ridiculous how long it takes to get a Pill check here, isn’t it?!’ She scoops up a pale pink bag and heads down the corridor.
When she walks past five minutes later, she wags a prescription slip in my direction as a goodbye.
I emerge from my chrysalis. It’s daylight and the sheets have transformed into a hitherto undiscovered substance during my time inside them.
The chrysalis stage involves me, the floor, and the bathroom. I usually stop bothering to eat solids after a while so I can promote myself to vomiting in the sink instead of the toilet (pro-tip). Plus it’s hard to appreciate the colour of bile in a loo.
The final chitterings of cramp have quieted down, prompting the cracking of the sheet walls. A twitched curtain gives a blinding indication that the weather (rather selfishly) has stopped providing an excuse for extended pupation.
My butterfly transformation equates to having a shower, my hair no longer being scraped into a grease-sheened lopsided lump, and my skin making First Contact with Not Pyjamas.
It turns out my nine-ish days of sleep-vom-don’t-bother-rinsing-repeat has led me to forget how temperature relates to my wardrobe (I’ve been meaning to make a Dummies Guide to the coats I own and the temperature bands they function in). Still, I understand that a healthy glow is desirable?
In the words of Pratchett, I am glowing like a pig.
I find myself faintly surprised that the outside world actually looks familiar. It feels like the rest of the world should surely have undergone some sort of metamorphosis as well, but there’s the same old pavement with the same old malformed Lucozade bottle and faded ruin of a Quavers packet.
Home, sweet home.
Life outside my chrysalis scrapes the ears and eyes, but also contains delights such as non-frozen or tinned foodstuffs, and other people – some of whom I actually like. (I might not be deemed the most social of butterflies).
There are queues to stand in, the Tube to be delayed on, inconvenient misunderstandings to have with pharmacies, piles of ignored messages to respond to, and those oh-so-delightfully crunchy sheets to wash.
Today is a good day. It might not be long before my butterfly self catches alight but, on the plus side, a caterpillar always crawls from the ashes.
I, sixteen, and you sixteen in a pack – so strong, so reliable. You seemed so available back then.
I couldn’t get enough of you. Ignored the murmurs from my family, my friends.
I needed you.
But your sugar coating was skin deep.
You turned my bowels into burning pipes of doom.
O! The diarrhoea!
The tender eruptions of our love!
My stomach filled with the broken shards of our promises, and inflated till it tried to escape my chest. Vomit stained my nights.
My stomach in my mouth, I had to let you go.
Many years have grown between us now. I watch others flirt with you and bite back warnings. They will learn.
He sleeps now, my Morpheus, he doesn’t know I once loved another. He is a gentle tonic after your burning love, for all that he is slow to respond when I call him.
You, oh, you were my first love.
I wonder sometimes, if I were to meet you again, would we be as once we were?
Sweet sixteen and the pain of the world washed away.
I walk into my wardrobe each morning and select my meat coat.
It barely takes me a minute. The bones and sinews of my hand reach toward the well worn coat in the middle of the array. Like the others on display, it shines pale in the cool light of the wardrobe – amphibiously pale, as someone once pointed out, though sadly lacking in mucus. It is somewhere in the middle of the other meat coats, heavier than those that are more wetsuit than meat coat, but less bulky than those at the far end.
The meat coat I choose bears more signs of wear than the others. Faint tan lines around the neck and shoulders, a spatter of freckles at the elbows, slightly better skin from all that moisturising. I should really moisturise the others more often, but the topography of even the thinnest coat is tricky without a body inside it. Every time I nick this meat coat, I faithfully replicate the slice on each of the others, and pay close attention to ensure the healing scars match. Wouldn’t want to cause a scandal.
My mother, of course, thinks I’ve made a foolish choice and should swap my current coat for a lighter one, one that doesn’t come with a range of risks for disease and ridicule. My mother and brother are both wearers of leaner coats, tan skin taut over veined muscle. I can see her bite back words of worry when she looks at me, when she spies the lack of gap between thighs, the lip of belly, the softness beneath chin. She doesn’t always manage to bite back successfully.
This meat coat comes with a lack of expectation. It doesn’t play the game that the thinner coats would have to play, and isn’t a target for the flak that the heavier coats would receive: it is happily on the sidelines. It comforts rather than threatens, and it remains invisible to most. It feels safe.
I’ve never worn the thinner coats. I wonder if I would feel like a child wobbling in high heeled shoes. A newborn colt, suddenly exposed to the world’s gaze. I’ve crawled into the meat coats at the far end, the ones that don’t like to move, their softness both comforting and claustrophobic.
Venturing out without a meat coat is the greatest taboo, of course. But I thirst for a morning where the meat coat I choose is of no consequence. It signifies nothing. Holds no import in comparison to the person it covers. That isn’t how we work, of course. We constantly seek a reflection of our insides on our outsides, uncaring of whether it actually is a reflection or not.
If the world were blinded, it wouldn’t be long before those with the sweetest voices were sanctified.
It’s around 30 feet across, covered in the springy grass that only grows atop really peaty soil. About two feet in from the edges are thick metal loops that have been hammered into the ground, each as thick as my wrist and veined with faint reddish streaks. They’re buried at one foot intervals around the circumference of the island, and while some lie empty, others hum and spark.
The one nearest me is barely visible beneath a mass of shining, seething threads, each stretching and intertwining with its sisters to form a single thronging rope that throws itself beyond the island and out into the mist. This is by far the busiest hive of threads.
It leads to my mother’s island.
Every thread is a message, a photo, a phonecall, a hug, a shared laugh, a rushed journey to comfort, a warm meal, an eye roll, a word to the wise. The threads dash from my end to hers and back, the rope between us now too thick to grasp in both hands and electric with activity.
A short walk away lies another loop. This one empty but for a single sparking thread that noses the air, then tentatively slips away into the mist.
Let us watch and wait.
After minutes-days-weeks, the thread begins to vibrate, and from beyond the island comes another line, intertwining with mine until it reaches the metal loop. As it does, the filaments grow brighter, stronger. This is the birth of a friendship, the tentative creation of a relationship that will grow stronger as the threads continue to weave between the islands.
On the other side of the island are the loops I avoid, letting my eyes slide away as I walk past and tend the others. They still have thick bundles of threads tied to them, but they are withered and grey. There is no spark, no movement, and if you stand and watch, you see only fraying and splintering. Some of those cords still stretch in vain out beyond the island’s edge, but others hang limply over the side, severed and flailing helplessly in the wind.
The threads of these relationships stopped flowing: one too many missed calls or failed replies, a long forgotten argument, a barrier of pride.
One too many cancellation.
Every time I cancel – a dinner, a birthday, a meeting, a concert, a rehearsal – I watch a nascent thread falter and fall still. For newborn relationships, it can be fatal; with established relationships, I can see a thickened scar of burnt out threads.
I tend to my island with love, haunted by the burnt out cords that flap failure in my wake.
In which we discuss MUPS (which isn’t a puppy with a suspiciously lumpy neck)
There’s a basement under the Great Hall of Diagnosis. It’s never talked about and the basement door can only be reached by traversing the myriad doors and corridors of the upper floors, with their neat, rectangular, printed labels (Erythromelalgia – Gonorrhea – Vitiligo – Yellow Fever – Ichthyosis).
The label on the basement door is handwritten with an attempt to look authoritative – right up until the writer realised they were running out of space and the letters began to get smaller and smaller:
‘Medically Unexplained Physical Symptoms (MUPS)’
Underneath, on a scrappier piece of paper, someone else has scrawled in blobby biro,
‘Welcome to the X-Files’
The basement’s occupants are numerous and varied. Every time medical testing fails to allocate a condition to one of the more reputable rooms above, it gets dumped in the basement.
The patient, meanwhile, receives the good/bad news that there isn’t a diagnosis. On the one hand, you’re not dying more quickly than you ought to be, as far as medical science can tell. On the other hand, we can’t find a reason for those physical symptoms, so we can’t treat them.
The unfortunate subtext is that there isn’t a real reason for the symptoms. There’s a sneaking suggestion that the cause of the symptoms is something psychological rather than physical, of the mind rather than the body.
The mind is a product of the body, of course, and undoubtedly can induce and influence the body’s behaviour. And yet it seems curious that this is the only explanation given weight. There is rarely any mention of the possibility that medical science might develop and learn more, and eventually figure out that there is a determinable cause for some of these conditions.
Conditions like Fibromyalgia and Chronic Fatigue are finally making the journey from the MUPS basement to newly decorated rooms with printed labels on the floors above. Evidence has been found and explanations have been developed following extensive research. Medicine is acknowledging that there is something real to find out about, and is finally validating the experience of all those people who were told it was in their minds.
On two occasions, I’ve been the patient listening to a consultant say they can’t find anything wrong. On both occasions, I nod, and silence falls. I wait for a suggestion of a next step, a new test or another referral, but their benign smiles remain impossibly fixed. I begin to feel flutters of frantic panic, a desperation for something, anything to hold on to, a gasp of hope. They give me nothing.
I wonder if they’re waiting for me to say the words for them, ‘There’s nothing we can do,’ and see myself out. I eventually received a ‘Good luck’ from one of them, but it tasted bitter in its emptiness.
Being designated to the MUPS basement leaves you unlabelled, open to the slow erosion of society’s slurs for those who lack a medically approved stamp: lazy, attention seeking, hysterical, weak, a drain on resources.
I have things a good deal easier than a lot of people. I don’t have continual, endless pain, I don’t have a permanent physical disability, and my brain more or less manages its chemical levels without too much intervention.
Some of the time, I’m okay. I can function, push through a bit of fatigue and get on with things.
But then I get a timely reminder: Mister Hyde is never far from the surface.
He emerges when I’m sitting in a meeting and twisted to the side, or I’ve been for a walk, or I’ve been sitting in a car or bus, or I’ve done something physical, or become stressed or excited or upset, or on a few occasions, he’s emerged when I’ve been sleeping – which is possibly his idea of humour.
Hyde arrives with an insidious cramping that creeps up and down my right side – from the muscles in my right butt cheek, all the way up my back, through my shoulder and pec, up my neck, and across the right side of my face.
He lingers and worms and burrows, pulling on nerves until the nausea builds and the pain ramps up. He’ll occasionally abate for a bit after I vomit, always the gentleman, but slithers back after a considerate pause. Ever the tease, he sometimes crawls along my muscles to chew at my calf, a potential precursor to him buggering off.
He usually rips his way back up.
Mister Hyde tends to stick around for two or three or four days, with little rhyme or reason to his presence. He’ll shut up a bit if I manage to chug painkillers in time and keep them down, but I can feel him lingering underneath, waiting for my bloodstream to empty. I lie on the floor (hard surfaces are easier to dig your muscles against), curtains drawn, waiting for him to leave me alone.
Mister Hyde is an absolute bastard.
He arrived when I was about thirteen, a curiously literal pain in the butt that would cause me to dig my rear against seat belt holders and the corners of cupboards. He grew as I did, spreading until now he sometimes flirts with the left side of my body, cramping a shoulder muscle or digging into my neck. A reminder that there is a whole lot of unconquered territory left, and that things could be a whole lot worse.
Medically Unexplained 