NEWS: Absence of Andy Luke
I remember the first time I saw a seizure. As the girl fell to the ground, the staff rushed to place pillows near, and move a table away. I can’t recall what I did, besides watch: I understood it was a horrifying experience and couldn’t turn away. All in the nursing home were aware of her status as an epileptic; as a young care assistant, I preferred they not know about mine.
Absence seizures are invisible. Forgetfulness, blips taking concentration off-track. I’ve had these since I was eight, with rare exceptions, they’re quite harmless. My minor condition wasn’t a burden to prevent me abseiling, bouldering or rafting, in good company. The burden of epilepsy education wasn’t apparent in my youth and tablets kept my system in check. A side effect of both the meds and the condition is mental health problems, in my case low self-esteem. I push myself harder, welcoming the work ethic. The risk has led to multiple regrets, and pride.
The genesis of Absence, the comic-book lies in one such risk. Scott McCloud coined the phrase, “24 Hour Comics”. The object of this exercise is to create twenty-four pages of a comic-book in twenty-four consecutive hours. I refer to it as, “extreme cartooning”, and I’ve done some of my best work with the ethos of ‘just doing it’. In February of last year, Absence was produced. Proved as an underground comix success, it’s been coupled with a reservation regarding my good behaviour by bad example. A major trigger to seizures in my experience has been improper sleep allocation: a symptom found in very unstable people.
Out of curiousity I attended a free creative business course run by Creating Enterprise NI and began sessions with artist and tutor Bronagh Lawson. These helped me consider aims and focus: truthfully, I’d not been much for fine art, preferring creating cheap, disposable comics. Thinking out loud about professional arts was vital to me in pitching for funding from the UnLtd Millenium Awards. The fund recognises social entrepreneurship with a community focus. Voluntary employment is not properly recognised by the benefits system. Yet, the help of Meabh Cormacain and others at UnLtd allowed me to devote respectable attention and some time to the booklet.
I started researching by attending one of the seminar days run by a leading epilepsy awareness charity. Something which should have been done an age ago. Over morning cuppa, I spoke with an old-timer, diagnosed with epilepsy as a youngster. He had kept it a secret; not really understanding what this meant or how to manage it. He had told no-one except his wife, and, she only found out when he was sacked from his heavy machine labouring.
“How could you not tell anyone?”, I asked.
“If you tell them, they will be able to know what to do. Or at least stand a chance.”
He just nodded.
“I didn’t know anything myself. No-one told me. That’s why I’m here today, to find out.”
Dr. James Morrow, an entreprenuer himself, spoke wonderfully of his findings from decades of research. For years, Belfast’s only epilepsy specialist, he mourned the loss of funding in medical provision and warned of challenges ahead. We exchanged books. Morrow’s A Patient Handbook alerted me to the fact that there are around twenty different types of epilepsy, some which appear similar. Epilepsies is the preferred term of sufferers and medical staff. An audience participation forum led me to think on where my book would appear. Most concerning of attention were the workplace, education and surprisingly, in healthcare. Also within the police network. I heard several horror stories that day of tonic clonic convulsive seizures misinterpreted as drunkeness. I should add, the first officer I questioned about epilepsy gave as good a knowledge response as I’ve come across from non-medical staff.
It is safe to say many epileptics have little or no memory of their sezures. Diagnosis is often made by historical eye-witness statements. Epileptics are dependent on this, and vulnerable to these observer accounts. I’ve suffered from several types of epilepsy and a few months ago, I suffered a tonic clonic seizure. I’d known Richard well for ten years, and schooled him well. Yet when it happened, he was unprepared.
My first memories were of the translucent mask affixed to my face by a large domineering stranger in my friend’s flat. He looks me in the eye and points across the room at pal’s distressed face.
“Who’s this? Who’s this?”
“Who is he? What’s his name? Do you know where you are?”
Well, would you tell them?
“You seemed to have enough self posession still to know what was happening to you, so you rolled onto the floor and it was like you were trying to get into the recovery postition, but couldn’t, due to the extrememly violent power and force of the convulsions.”
Richard goes on to record,
“Then you stopped, tried to get up onto your feet, started again and fell sideways banging your head off the coffee table.”
The post-seizure moment, when a sufferer should relax, was altered, by the effects of the oxygen mask. I rode with the emergency team out of obligation to their responsibilities. In the hospital, I spoke coherently with a surgeon and nurses. A lift home from friends had been arranged, but the surgeon interfered with communications over my four hour stay. Staff forcefully neglected my stability and coherency in their forceful preference for an overnight stay. When they listened, I signed myself out against their wishes. By that time I was permitted to use the phone, but as it was after ten, my travel prospects were reduced to two feet and the risk that came with it.
I’ve found maltreatment to be rare but rising, as the result of government interference in an funding-drained, under-knowledgeable national health society. Richard has since cushioned his mouldy old armchair were I took the seizure as “Old Sparky”.
Stephen Downey, based in West Belfast, is like myself a part-time tutor who works in game design. The pull of his passion for the comics form has led to the hit graphic novel Cancertown, and work on BBC’s Torchwood comic. This month, in addition to his work on Absence, he has two other new works published; Slaughterman’s Creed, and Jennifer Wilde.
“Let’s make this a comic.” I said to Stephen. With all the things that means to us: Brilliantly engaging words and pictures meeting in the story experience. None of this ‘boke tract medical screed’ nonsense. Authors like Will Simpson, Garth Ennis, John McCrea and Mal Coney have helped make Belfast a cultural mecca of comic-books. Absence is in that tradition. When you have a read, the bold visual delights will infect your brain with contagious usefulness and coping strategies. Facts AND funnies.
The comic is set for a print run of 10,000 copies throughout the province and for free online through the Apple store and at www.absencecomic.com It will launch at Catalyst Arts, College Court, Belfast on Thursday April 21st at 7:30pm. I look forward to the sharing of stories: all are welcome.
WRITTEN BY ANDY LUKE. ARTWORK BY STEPHEN DOWNEY