by Ruth Dugdall
‘Would you like a seat?’ he had said, not taking one himself.
I felt a dull ache at the top of my spine. I knew I was ill, I just needed to know what with.
‘Mr Jenkins, have you heard of Creutzfeldt-Jakob disease?’
I was non-plussed.
‘CJD?’ he said.
It sounded familiar. ‘You mean mad cow disease?’ I had a vague memory from my childhood of John Gummer, the Tory health minister, force-feeding hamburgers to his daughter after BSE ravished the countryside. All those piles of dead animals, the news reports on the television each night.
He scratched his head. ‘It’s extremely rare. Only one in several million people gets it.’
‘So am I the lucky one?’
He cleared his throat and gave a brief nod. ‘I’m afraid so.’
I knew it wasn’t good news but seduced by the claims of modern medicine, I still believed that a diagnosis equalled a cure.
‘Have you ever had a blood transfusion, Mr Jenkins?’
‘No. Why?’
‘That’s one way you may have caught it. The other is through eating contaminated offal products. Probably years ago. This illness has a very long incubation period.’
There was a silence then, as I considered the slow-growing illness, the symptoms that had got steadily worse.
‘Is that why I’ve been dizzy?’
‘Yes. Symptoms include hallucinations, loss of memory and jerking. Similar symptoms to those associated with Alzheimer’s disease.’
Alzheimer’s. My father had that. It was a bastard of an illness, robbing me of my dad long before his body gave up. ‘So what’s the treatment?’
The doctor finally took his seat. At last he looked at me directly. ‘There is no cure, at present.’
I felt my jaw give way, words like marbles in my mouth, ‘There must be something you can do?’
He looked down at the pen he was fingering, cleared his throat, but remained silent.
‘How long?’ I asked.
‘Usually patients live for twelve months from the onset of symptoms.’ Twelve months. I had first complained of a headache in July. I had six months left. Science had let me down. I had to pray that God wouldn’t.
Cate’s eyes were the only thing moving as she scanned what she had just read. So that was the illness – Creutzfeldt-Jakob disease. CJD – mad cow disease, as Cate thought of it – yes, she too remembered the piles of carcasses in fields, and some of the farmers who refused to have their animals culled. Had Smith really wanted to be slaughtered just like a wretched animal?
She looked at the picture of her daughter Amelia on her desk, feeling the swelling around her heart. What a choice: to face death in a matter of weeks or months, or to choose your own end. Maybe she would have done it too, choosing the moment herself rather than waiting for the end to find her. Symptoms of dizziness, memory loss – how awful. What a truly awful way to die. She steeled herself to read on:
15th February
Since my father died in December I’d thought about what to do with his bungalow, a 1970s two-bedroom place with a square of lawn at the front and patio at the back. I’d thought about selling it but hadn’t got around to having it valued, putting it on the market. Now there was no time and no point in paying rent on my flat when the bungalow stood empty so that weekend I moved in. It took three trips to the skip to get rid of dad’s stuff, but my belongings hardly filled the place. One bedroom was an empty box, and the lounge looked spartan. I was used to a small flat, and now I had a whole house. Moving to the bungalow added another forty minutes to my journey to work, but it gave me a fresh start.
I didn’t bother registering myself with the local doctors. There was no medicine they could give me. It was a few days after the move that I put the advert on the web. Then I met Robin.
She stood on the railway platform, wearing a white wool jacket, the collar high on her neck, staring into the middle distance like some actress in a film. I knew straight away it was her. I’d expected a drama-queen. After all, she spends her time with fiction and she was preparing to star in the story of her life.
In the eighties there was this urban myth going around that I keep thinking about. Maybe you’ve already heard it? It’s about a young widow who decides to take a cruise, an opportunity for her to start to heal after the death of her husband. She isn’t rich, and it’s cost all her savings, but as she sits on the breezy deck she knows it was worth every penny. There’s a man on the cruise, handsome and smartly dressed, who takes an interest in her. They eat together in the evenings and walk around the boat each day. They talk. He’s a widower too, and they get on well. As the cruise progresses and the boat reaches warmer water the man and woman sleep together. He’s a good lover, and the woman begins to believe she’s been rescued. The man says he loves her, that he wants to be with her forever.
On the boat’s final stop they walk around a Caribbean island, but when the time comes to head back to the boat the man is nowhere to be found. Assuming that he’s gone ahead of her the woman rejoins the cruise and the boat begins to pull away from shore. When it’s far from the harbour the woman sees the man on the land, waving at her and smiling. He is waving goodbye. Before she has a chance to cry out she feels a tap on her shoulder. It’s one of the porters. ‘The gentleman asked me to give you this.’
It’s a package, beautifully wrapped in gold paper and she thinks it must be jewellery, maybe a ring. But inside the paper is a small wooden coffin. Inside the coffin is a note, which reads: I have AIDS. RIP.
Although this story must be fiction I’ve heard of people deliberately infecting others, or threatening to stab them with a contaminated needle. Only last week a woman was imprisoned for infecting her lover, without warning him that she was HIV positive.
I suppose I’m thinking about that tale because in the Eighties everyone was paranoid about AIDS, and everyone was terrified they’d be infected like the woman on the boat. But now I sympathise with the man on the shore. Who wants to be in his shoes? Who could bear to suffer alone? It’s supremely selfish, but I long to be with someone else who’s dying, to talk with them. But how? There are no volunteers. Not usually anyway. I don’t want to be alone when I die.
We meet at weekends and I’m careful to protect her. I protect Robin from my sickness, hiding the signs of it.
We don’t sleep together; sex is something we are saving for the hour of my death. I try not to think of the lovers she must have had before me. I tell myself it’s an advantage; she’ll guide me.
My body is losing its fight with my brain. No amount of positivity or herbal potions will help. I’m learning about death. I’m reading about other people who faced death how they found the strength. The Bible shows me the way, that epic study of death. I thought of Jesus, looked to his example first, but then I looked back at the Old Testament. There’s the woman who, after a siege by the King of Syria, tells of how her neighbour said, ‘Give thy son, that we may eat him today and we will eat my son tomorrow.’ So they boiled the son and ate him, and the next day the woman said, ‘Give Thy son, that we may eat him,’ but the neighbour refused…
And Jesus, asking his disciples to eat the bread, the flesh – to drink the bloody wine. Krish, do you think only unnatural people are cannibals? You believe in reincarnation. Can you see how it’s a way of living on, of cheating death?
Normal people do abnormal things. Even after I’d placed my advert on the internet, seeking a woman to help me die, my life was ordinary. Even now, when I’ve found the right woman, when I’ve decided that I want her to eat part of me, life carries on as before: I shower and hate the water too cold, I still moan about the amount of crap on the TV, I still get pissed off when I run out of milk in the mornings and can’t have my coffee. Normality, despite everything.
Some things have changed. My kitchen cupboards, normally stocked full, a sure sign of my need for order, that obsessive gene in my DNA, are less organised, and I haven’t replaced the lines of b
aked beans and peas and dried pasta. I don’t think about food while I read about death and cannibalism. Instead I hunger for emptiness, for stories. I’m starving myself with words. It’s all part of the preparation…
3rd March
Sacrifice. (n)
1. The act of giving up something valued for the sake of something else more important or worthy. 2. The slaughter of an animal or person or the surrender of a possession to a deity. 3. Offer to kill as a sacrifice [from the Latin sacrificium] By reading, by searching, I’ve discovered a group of us sacrificial men. Jesus, of course. Suicide bombers would be in, and many, many more.
I’ve read the story of The Mignonette, a boat crippled some 1,200 miles from the Cape leaving the crew with no food or water for twenty days. Though surrounded by seawater they believed that drinking even a small amount of it would kill them, and threw rainwater and turtle meat that had been ‘contaminated’ overboard. The youngest of the four crewmen, just seventeen, couldn’t resist the water when his lips were black with thirst. Already dehydrated, he got violently sick, and this marked him out as the weakest of the crew; the strong will always prey on the weak. The captain spoke of drawing lots. The man who drew the shortest straw would be sacrificed for the survival of the others. Whether this process of selection actually took place is disputed.
On the twentieth day the captain found the boy, who looked up from where he lay, weak and sick, saying, ‘What me?’ in recognition of what was to come. He struggled and cried but while another sailor held the boy down, the captain slashed his jugular artery with a knife, catching the blood. After the boy had slowly bled to death the three men drank his blood then feasted on his vital organs.
When they finally arrived on land, the men claimed they’d done nothing wrong, that the boy had died for a greater good. The captain even complained when his knife was taken away as evidence, as he wanted it as a ‘keepsake’ of what had happened.
Sometimes I’m the boy, sometimes I’m the captain. Sometimes I’m the sacrifice, the body ready to be butchered, the boy who has drawn the short straw, but other times I think that I hold the knife. I’m in control. I’m choosing. In asking her to eat me I’m fulfilling a finer destiny for Robin, a clearer end for myself. I give myself up freely, in the belief that I will live on afterwards.
The boy didn’t volunteer but that doesn’t make his sacrifice less noble. Even Jesus doubted his martyrdom, stumbling three times under the weight of the cross. That’s why I have to keep Robin’s destiny hidden from her. It’s for her own good.
I found something out that changed everything.
There are remote tribes where, at least before the 1950s when white missionaries forced their own beliefs on them, it was part of the ancient funeral rites to eat the dead. But the tribes became sick. Those who ate the dead and prepared the body for the feast, cut the skin and drained the blood, developed symptoms: palsy, and memory loss, aggression and confusion. In short, they had CJD. Then the missionaries came and taught them a different cannibalism, with wafers and wine. All of this, it got me thinking, and I start to wonder if my brain is impaired. I’m sick, carrying the damaged prions with diseased messages, but is my brain so affected that I can think of passing this on to Robin, of letting her eat my flesh, and it doesn’t seem horrible? Instead I see a circular, poetic justice, like the karma that you told me about.
To live on through her, until she dies. Why is it a comfort to me? I’ve been emailing Robin. I told her about a place where funeral fires are built high into the sky, smoke lifting up to the hot sun as leaves of falling ash touch the ground like a blessing. Strange men, red paint on their brown limbs, dancing to the rapid beat of a skin drum, as the women sway and sing and raise their hands.
I told her about the cut in the soft flesh of the belly, the taking away of the sweetmeats inside. The women, who sing as they slice, boil and season, using vines and flowers and grain in their cooking. Who drink the blood and eat the meat. What remained was burnt, a gift to the gods. It doesn’t happen anymore. It’s only a dream, but it’s mine.
I told her of the love, the deep respect, the mourners had for the dead. How by eating the dead they carried strength in their stomachs, in their blood. I told her that this was my choice.
The immortality of sustaining her, of living within her body.
I want her to eat me.
She needs to practice. I’m thinking about how.
Cate stopped reading. She understood now, why David Jenkins had kept his illness a secret… she will follow me… he wanted to infect Alice. Because, if she had known he had CJD, she never would have agreed to eat him. What a twisted ploy… Christ, what a sick bastard. Could Alice have had no idea? Surely Smith must have looked ill? Surely she would have wanted to know why he had asked to be eaten?
She felt sick, and breathed deep to calm her stomach, listened carefully to the silence in her home, glad that Amelia was fast asleep, as if dreams could safeguard her from the perversions written in the diary. She longed for sleep herself, or at least not to think about what she was reading.
When she first read about Jenkins’ terminal illness she felt sorry for him, and began to understand why he had wanted to die, to choose his own end. But now, reading that he wanted to take Alice with him, she wondered how someone could consider such a thing. Cate didn’t believe in Evil. She’d worked with enough criminals to know that even the most heinous acts are rooted in dysfunction, be it abuse, bereavement or addiction of some kind. Evil however was a fixed, permanent state and easy rhetoric for those who didn’t want to acknowledge their shared responsibility in the crimes around them. Cate knew that David Jenkins wasn’t evil, but his rationale, his decision to infect Alice, was so calculating, so horribly detached, that it was a very close imitation.
The right place for this memory stick was with the police. But first she must finish reading. She had to finish what she’d started.
1st April
My brain is playing a joke on me.
I can feel my recall losing ground, struggling for a good grip, but there’s a dusty filing cabinet that’s left in the dark corner of my brain, undisturbed, so what happened in the past can be retrieved. It’s only new data that’s flimsy.
I’m obsessed with my own death.
I romanticise it, like the writers and artists Robin talks about. I’m also obsessed with other people’s endings. Untimely suffering, tragic coincidences are my fixation. Now, instead of seeing the world through insurance facts and variables, the risk of a car crash or divorce, I look for the improbable, the freakish deaths. I want to read about shipwrecked boats where sailors threw passengers overboard into the icy sea, an orgy of murderous self-protection, a death-cull that took hours. I’m surprised that such stories aren’t more common. I read about men forced to eat human flesh to survive, who are then driven mad with gluttony.
When I visit Robin I insist that we go to the sea, just over an hour from Lavenham. She doesn’t like the coast, but I don’t care. The sea is a grey-brown sludge. I watch for most of an hour. The boats make me think of travel, of being somewhere else. Of escaping myself and my destiny. I cast my fears into the North Sea, and tell myself that Robin is my ticket. She is also my destination.
Krish, us actuaries think in numbers. Well, here are a few for you: in 1970, when figures first started, there were 21 deaths from sporadic CJD. In 2002 there were 67. This year there are already 80 cases in the UK. Me being one of them. 10% of patients have symptoms usually associated with Alzheimer’s. In younger people the average age for onset is 28, but it can happen at any age. And my favourite fact: Creutzfeldt-Jakob disease has been prolific in a tribe in Papua New Guinea.
Statistics are a great comfort. It’s only human to want to belong in the majority. When it comes to misfortunes, we escape by being in the norm. How many passengers at airports, hands clammy and heartbeats rapid, tell themselves that they are more likely to be killed crossing the road than flying in an airplane? Exactly! We don’t want to
be exceptional, or stand out, and we believe our ordinariness is a charm. When something happens, like 9/11, it shakes this belief and we suddenly see that those on the edge of the statistics, the unlucky minority, are just like us. Suddenly a world of terrible possibilities opens up and we’re afraid to use the tube, step on a city bus.
Did you know, Krish, that in America the chance of being killed by a terrorist bomb is 1 in 2,200,000? In short, you have more chance of winning the lottery, which is a comfort, because everyone knows they’ll never win the lottery, they could never be that lucky. So if that is more likely than being blown up, they must be safe. It’s logic of a sort.
But what about other deaths, other ways?
