SIMPLE MIND(SET)
As a rule of thumb, I don’t do self-pity. I brush off coos of sympathy when reeling off my War and Peace-esque list of medications. Grimacing momentarily at money lost from cancelling holidays last-minute due to illness, I take a deep breath and move on. Ever the people-pleaser, I explain to concerned friends that ‘it could all be so much worse’ and ‘that I’m actually pretty lucky’ and ‘it’s not that bad, really’. A trained psychologist might call it denial, but generally speaking, this strategy serves me well.
Yet even the most robust self-defence mechanisms suffer from blips, and accordingly my emotional strength ebbs and wanes. Sometimes, a low afternoon – or day, weekend, month – will be triggered by a disappointment in a non-health-related area of life. Other times, a personal success – a job promotion, a birthday – will serve only to contrast against the omnipresent hints of darkness that simmer insidiously like a menacing undertone to my entire life: the fear that at any given moment, my health could go belly up. A badly-angled selfie which screams ‘moonface’ has the power to send me into lamentations for the loss of not only my cheekbones and slim facial structure (R.I.P, gone but not forgotten), but also the lost sense of self-determintation, a yearning for the blissful time before my future was moulded into one of lifelong medication and medical observation.
Maybe I think too much. Indeed, I can usually refrain from wallowing in these dips by keeping busy, refocussing the mind on something else. But without fail, there are times when there is no option other than to confront the shitty reality of liver disease, and these are normally the times when I’m waiting for tests or procedures. The moments when I must confront the absurdity of what I’m experiencing, and try to reconcile how these experiences paradoxically feel entirely anbormal and yet so familiar that they are now par for my course and are just another wonky patch in the tapestry of a life with chronic illness.
Like when I’m sitting patiently on a plastic chair in the corner of a box room with strip lighting and a slight whiff of bleach, tracing around the faded green and yellow iterations of ‘hospital use only‘ on my starched gown with a messily-manicured finger and trying to ignore the distant sounds of gagging from the endoscopy units across the corridor. I read the lonely laminated sign pinned on the door – ‘Alert staff if you are not seen within one hour of your appointment time‘ – and revisit the same page for the fifth time in my book.
Like when I’m placing my MRI-contraband wig atop what the nurse has christened a ‘royal crown-carrying pillow’ in her attempts to make the situation a little less awkward ahead of me entering the scanner. When she explains that a gadolinium complex is to be injected through my cannula and I’m reminded how learning the chemical properties of different contrasting agents was my favourite section in Higher Physics. When, minutes later, I’m lying a inside a plastic doughnut of magnets, my teeth chattering from a freezing air-conditioned breeze and my boobs squashed by the armour-come-shield contraption lain down on my chest which is at once suffocating and comforting. I inspect the iridescent speckles in the white plastic structure a hand’s-width above my face, until I can’t focus because the Buscopan causes my sight to blur. Changing tactic, I close my eyes, conjuring up the video of Elton John and Kiki Dee to compliment their duet which is blasting at a slightly-too-high volume through my earphones. I debate the pros and cons of pink jumpsuits but it’s called off by the interuption of the machine’s overpowering knocking and whining. Forty minutes later, I’m out.
Like when I’m in a dimly-lit, windowless sonology room in the underbelly of another hospital, getting icy jelly doused on my abdomen in preparation of an ultrasound to check that no tumours have flourished over the past six months in my liver, and to ensure there are minimal pockets of wayward fluid floating around. The sonologist, with less chat than a Benedictine monk vowed to silence, refuses to communicate any reassuring findings in real time, pausing the machine’s heartbeat only to comment that he cannot find the left kidney (which thankfully re-surfaces before the end). I ask for the spleen measurement and am told it’s 15cm, and I take that as a welcome reduction but know it’s still about 6cm too big.
These are some of the moments where the reality of my condition bites hard. Not necessarily in a painful way, thankfully, but in a ‘Don’t You Forget About Me‘ kind of way, as though Simple Minds might well gatecrash their way into the appointment, synthesisers and all. My illness is always there, and likes to reassert its dominance in my mindset from time to time. But, to refer to another Simple Minds track:
What you gonna do when things go wrong?
What you gonna do when it all cracks up?
Well, I get on with it. As long as I’m Alive and Kicking, I’ll take the good with the bad and try to make the most of life.
Kirsty x
