Porphyria

Porphyria
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I’d been on the ministry when I spotted Craig standing at the butcher’s counter in the Co-op. I was heading to the cereal aisle for Kellogg’s breakfast bars, which I snacked on while auxiliary pioneering. That afternoon, I’d had to note “Not Home” for every house I knocked on, apart from an old woman off Salford Precinct who accepted the Awake! magazine, but thought I was her daughter. I wrote “Return Visit” even though she had dementia.

Craig was reading the label of something meaty in cellophane. It was two years since he’d attended our congregation, wearing his suit and jazzy tie. He looked so worldly now in baggy ripped jeans and a battered leather jacket, his hair falling scruffily over his ears, no longer cropped into a neat back and sides.

“Hi, Craig.” I stepped closer, my cheeks flushing like when he held the mic for me to give an answer during the Watchtower study.

He dropped the packet onto the supermarket floor, then grabbed it and threw it onto the counter. Best Black Pudding. 30% off. Why was he even touching that? It was full of blood.

 “Thought it was sausages,” he muttered, looking around. “Are your parents here?”

“Err… No.”

He nervously glanced at the black pudding and then shoved his hands in his pockets.

My heart hammered away; my old fear of speaking to people thundered back. I’d made a mistake; I shouldn’t talk to him. He was a probably a bad association, but he hadn’t been disfellowshipped, and what if I rekindled his spiritual interest? I imagined being at Armageddon and how I might feel if I hadn’t helped him return to The Truth. I took a breath and said, “Do you want to go for a brew?”

There weren’t any cafes on Bolton Road, so we went in The Red Lion and asked for two cups of tea. The barman raised his eyebrows and said he didn’t have a kettle so Craig ordered a pint of Boddington’s and I got a diet Coke with ice and lemon. I gave Craig some money and dashed outside to call home on the payphone, saying I’d be home late. I found myself telling Mum that I’d bumped into a Sister from another congregation and we were going to the cinema.

“You’re not going to see Titanic again, are you?” Mum said, and I said, “How did you know?”

“Don’t be too late. You know how your father worries.”

Craig and I sat down at a table in an alcove. I brushed my hand over the burgundy upholstery. With a strange thrill, I realised it was the first time I’d been to a pub on a Friday night. In the corner, multicoloured disco lights flashed around an empty dance floor. Something by Aqua boomed from the speakers. Top of the Pops was on a meeting night, so I struggled to identify songs, other than anything by Celine Dion.

Craig sipped his beer. He was unshaven and pale and had some kind of whitish cream stuck to his stubble. He leaned his elbows on the table and looked me in the eyes. I pulled back because of the smell. It wasn’t all sweaty trainers like boys at Buile Hill High, more like wet soil, something earthy and metallic. Coppery.

“Why did you just disappear, Craig?”

“Something happened to me.”

“What?”

He shook his head as if he couldn’t explain it.

“Do you need to speak to an Elder?”

“Ha! They wouldn’t understand.”

“Well, try me then.”

“Let’s dance.”

“What?”          

At that moment, “My Heart Will Go on” began to play. Craig pulled me onto the empty dance floor. Even I, who never went to pubs, knew it was too early for the disco. But he didn’t seem to care. We danced to the song I’d played on my Walkman in my bedroom, with an idolatrous full spread of Leonardo di Caprio cut from Just Seventeen hidden under my bed. Craig slowly waltzed me around the space like an old couple at Butlins, while the multicoloured lights flashed around us. I’d dreamed of this, of us being alone, and now it was here, I felt my heart expanding; something important was going to happen despite the smell. But I remembered Tanya being publicly reproved when she got involved with a lad who claimed he wanted a bible study. Maybe I was repeating her mistake. Nearby, a woman sat at a round table, her short skirt revealing her orange tanned thighs. She puffed on a cigarette, and as I inhaled her smoke, words from the Watchtower came to me: I was breathing in the world’s air, and it could be death-dealing.

I pulled away from him. “I think I should go.”

“Natalie,” he whispered, gripping my arms. “I have an illness.”

“What? AIDS?”

“No!”

“Cancer?”

He just shook his head.

“Tell me what’s wrong,” I said, “or I will go home.”

“Remember that Sister I brought to the hall? From Prestwich?”

“Yes.” I’d wanted to look like her, floaty and ethereal, see-through like a jellyfish, but I’d never got that thin, even though I only ate Kellogg’s breakfast bars.

“There was something wrong with her,” he said. “We…”

“You were immoral?”

“We didn’t have sex or anything. But we… Then she … left me like this.”

Celine Dion ended, and some kind of rap came on, so we went back to our seats. He got us both a glass of red wine from the bar, even though I hadn’t asked for it. Then he sat down to tell me about this Sister he had fallen in love with but who had started to change and behave oddly. He thought she was an alcoholic until one night she did something to him. “She bit me,” he whispered. While he told me this, the vinegary red wine started to take effect, and his outline became blurry, his words like music. When I stood up to go the loo, the pub reeled. For a moment I wondered whether I was being led astray, and if so, why it was so easy, and if it was so easy, why it hadn’t happened before.

*

When I got home, I struggled upstairs to the bathroom, tripping on a step, my mother’s voice calling, “Natalie? Is that you?”

“Home, Mum. Just going to bed.”

“Did you lock the door?”

“Yes.”

I closed the bathroom door behind me, peered at the bite on my lip and then dabbed it with TCP. My mouth stung like mad, so I held the cotton pad to my skin until the stinging eased. Then I dabbed the small cut on my wrist and covered it with a plaster, listening to the sounds coming from my parents’ bedroom. Dad’s deep snore. The creaks as they turned over in bed. My head span: a blur of stumbling out of the pub to stand on the main road, and then kissing, the taste of metal, like I’d bitten my lip, suddenly realising that my lip was bleeding. He’d showed me the long nail on his index finger that he’d grown to play the guitar with and said, “Watch,” and then he drew it across my wrist and licked the seeping blood. He did the same to his wrist and raised it to my mouth.

“We are blood brother and sister now.”

But it had gone further than that. He’d sucked on my wrist until I said, “Craig? What’s wrong with you? You know we abstain from blood.”

He just looked at me and then held my wrist again to his mouth. Suddenly I wanted to have this thing that was so bad that we’d rather die, that had us vilified in shrieking Daily Mail articles, but was in fact forbidden in the scriptures, which I could recite any time of day. “I have a blood disorder,” he said. “Like an addiction. Porphyria.” His parents wouldn’t understand, so he’d gone to stay with an old school friend in a high-rise on Salford Precinct and was having some kind of treatment. He walked me to the end of my road. “Everything is different now,” he said. “You need to see it, Natalie. You need to open your eyes to the truth.”

*

The next morning, I woke thirsty, my mouth dry. I gulped down a glass of water in the kitchen. My head pounded, but now I knew what a hangover was. I knew what a kiss was too. I could still taste it, like metallic apples on my lips. Things were different. I was different. My skin pricked and itched, my forehead was hot and cold at the same time. I should have felt guilty, but I didn’t, and I didn’t feel guilty about that either. I changed the plaster on my wrist. The mark underneath was only small. Just a slit with a nail. Who knew you needed such a sharp nail to play the guitar? Who knew you could use it to do this?

*

The house was quiet. Dad usually left before it was light to go window cleaning and Mum either worked at Clarke’s or was in bed with her tiredness problem. This morning her bedroom door was closed so it must be a tired day.

I caught the number 68 to the city centre, the word “Porphyria” running through my mind. It was another quiet day in Kendals, not many customers wanting to buy plates from Villeroy & Boch; business had been slow since the Manchester bomb. I dusted the shelves and hid a flask of water in the stockroom. My manager got annoyed when I slid a cheque into the till the wrong way round, but when I told him I had a hangover, he gave me a smile like this was a good thing. While I dusted the shelves, I felt hungry but unable to eat.

When I finished at four, I walked to the Central Library. The large round building smelled of old paper, of its millions of dusty books. I found the reference section and asked the librarian for a medical encyclopaedia. I secretly liked looking things up, researching. Though this meant I was good at studying for the meetings, underlining the answers in the Watchtower in multicolour pens, I sometimes wondered why I’d never be allowed to give a talk. Dad said maybe I could go to Bethel. Then it hit me. Perhaps I couldn’t go to Bethel now. I’d got drunk. I’d sucked someone’s wrist! I hadn’t abstained from blood. Why had I done that? Maybe I should go straight to the Elders and confess, but then I’d get Craig into more trouble. I’d already got Tanya into trouble, telling the Elders I’d seen her with the boy from school. Though that’s what you do to keep the congregation clean, and she was now happily married to a Brother, she still didn’t talk to me years later.

I sat down at a long desk and opened the encyclopaedia, each turn of the page reverberating around the room with its high domed ceiling.

I looked up “blood disorders” and “haematology” and then “porphyria”.

Porphyria is a group of seven inherited metabolic disorders (diseases), caused by seven different faulty genes.

Erythropoietic protoporphyria (EPP) causes people’s skin to become sensitive to light. In some cases, prolonged exposure can lead to painful, disfiguring blisters. People with EPP are chronically anaemic, which causes fatigue and paleness with increased photosensitivity. This rare disorder is often treated with blood transfusions with high levels of heme, plus the avoidance of ultraviolet light.

That didn’t make sense. Craig said he caught it off that Sister. I found myself scratching the cut, so I peeled off the bandage. Around the scab, purply spidery lines spread out over my wrist, like some kind of infection. I ran downstairs to the toilet in the basement and held my arm under the tap. I felt heavy, as if my legs were filled with stone. My forehead was sweating, and in the mirror I looked pale, my skin papery dry, like I’d aged overnight. Then I remembered where I’d heard that word before: in a poem at school. I wanted to find it in the library, but I was so tired I got my coat and hurried home.

*

The next day, I woke up shivering with pains in my head and stomach. I told Mum I wasn’t going on the ministry, then fell back in bed. The day passed in strange, feverish dreams, the poem coming back to me: a woman with long blonde hair sat on my bed. I wrapped her hair around her throat and strangled her, then lay her dead body next to me. I’m sorry, I said. I’m so sorry.

I came to with Mum standing over me. My stomach lurched, and I leaned over to vomit on the carpet. My sick was watery purple. Mum leapt up to get a cloth, and while she was gone, through swirling fog, I thought how strange my room was: the blue and pink flowery wallpaper I’d chosen from Fads now felt like a floral tomb. When Mum came back, she tried to open the curtains, but the sunlight stung my skin. “Please, leave them closed.”

She sighed, saying she had called the GP, but they said we should go to A&E. I might have meningitis or something else. “Look at your skin!” she said. “It’s practically see-through, and you’ve got a blister on your cheek.” I touched my face while Mum cleaned up the carpet, saying. “Have you been on the Ribena? We’ll wait until Dad gets home. I’m not going on my own.”

*

When we got to the hospital, it was nearly five pm, and I’d vomited until nothing more came up. I thought I could see the blonde woman from the poem sitting on a chair in the waiting room, her long hair wrapped around her neck. I called out to her, “Don’t let him do it. Put your hair in a bun!”

“Ssshh,” Mum said. “You’re hallucinating.”

A while later, I found myself in a hospital bed in a single room, with nurses around me. Mum was standing nearby crying, with her hands over her face. Dad had an arm around her shoulder. Then two Brothers appeared. I thought I recognised them from the Convention. Dad grabbed my hand, saying everything was fine because they were from the Hospital Liaison Committee and would make sure I got bloodless treatment. They talked about blood expanders and other things to get my blood count up. I asked Mum if Tanya would visit me, and she said, “She’s busy with her baby. You know how it is.” I said, “Yes, I know,” even though it hurt.

I must have gone unconscious again because I woke with drips attached to my arm. My parents were sitting on plastic chairs. One of the Brothers kneeled down and squeezed my hand, saying I was a brave Sister and not to worry.

Over the next couple of days, I seemed to get worse. I slept on and off, my skin sore and peeling. When I tried to eat, I was sick. But beneath the nausea, I felt ravenously hungry. One morning before my parents had arrived, a young doctor came to stand by my bed. She had blonde hair tied back in a ponytail, and wore small glasses. I wondered if she was the Porphyria I’d been dreaming of. “Be careful,” I said. “Don’t trust him.”

“Who?”

“Him! He says he will help, but he will just strangle you.”

“Natalie,” she whispered. “Are you trying to tell me something?”

“I … I don’t know.” I blinked at her. She was pretty, with rosy cheeks, not pale like Porphyria or the Sister from Prestwich. More like Kate Winslet as she set off on the Titanic.

“I wanted to talk to you on your own,” she said, sitting on a chair. “You’re eighteen and an adult, so you are legally able to decide your own treatment.” I nodded a little though I knew she was going to talk about blood because doctors were always trying to force it on Witnesses, instead of alternative treatments.

“You are quite severely anaemic,” she said. “Even before you presented with these symptoms, you had low iron stores, which is related to your low body weight. As you know, we’re giving you iron infusions to get your iron up. But we are unsure yet what is causing these symptoms, especially the skin lesions.”

Up until now, I’d not mentioned the word because I hadn’t wanted to tell anyone about Craig. But now, I said, “I think I have porphyria.”

She sat back a little. After a moment, she said, “That set of disorders are very rare and usually genetic. I’ll run some tests. Did you know you had a genetic predisposition to this?”

“No. Only my friend has it. Erythropoietic protoporphyria,” I said, slowly pronouncing each syllable.

“You don’t catch it like a cold. However, there can be environmental triggers so that your body’s demand for heme production increases.” Then she whispered, “I have your card. Your signed blood card, but can you confirm for me that you want to refuse all blood products? You don’t need to inform your parents of your decision.”

“No blood,” I said and turned my head away.

*

That night, Craig appeared beside my bed. I was half asleep. I blinked at him, trying to sit up. “How did you know I was here?”

“My dad came to see me,” he whispered as if the Elders were listening. “He told me you’d gone into hospital. I’m so sorry. I shouldn’t have done that, shouldn’t have bitten you.”

“Then why did you do it?” I asked. His apology made me realise that he had caused this. “Why?” I demanded more loudly.

“I don’t know.” He looked around, but the corridor outside was quiet. “How are you?”

“A bit better.”

He leaned in. “You need to let them give you a blood transfusion or you’re going to die.”

“I can’t, you know that.” Then I said, “Have you had one?”

He nodded. “I have one every two weeks.”

“And still, you bit me and made me like this?”

“Don’t you remember what I said?”

“Not clearly.”

“I said I’d never felt more alive. Like I’m suddenly awake. I can see everything clearly. I think all these years I’ve been in a dream. I… I thought you’d understand.”

I lay back on the pillow and closed my eyes, but Craig carried on talking about how he’d been looking into things and everything we’d been taught might not be true.

“You’re an apostate,” I said, turning away.

“What does that even mean?” He placed a hand on my arm, saying that that word was just used to shut people up. Close down discussion. “Don’t you feel it? Don’t you feel yourself waking up?”

“I just feel ill.”

“But underneath, don’t you feel hungry?”

I blinked at him, not replying.

“Natalie,” he said, grabbing my hand. “Why don’t you come and live with me? We could be together, get the treatment, live a new life. I’ve so much to tell you.”

I pulled my arm away. “I don’t know.”

He rummaged in his pocket and got out a piece of paper and a tube of cream. “This is my phone number,” he said, placing the paper on the bedside table. “You can call me. Think about it, OK? And this is mineral sun cream. Put it all over your skin.”

A nurse appeared in the doorway, saying visiting hours had ended and he should leave. Craig said goodbye and slipped out. The nurse came back with the same doctor as before. Suddenly, my stomach lurched again. I heaved and dry-wretched. My forehead started to sweat. The nurse took my temperature and blood pressure. “Natalie,” the doctor said. “You were right. There is a new blood disorder, something contagious. There have been cases with similar symptoms in the North West. You need to have a transfusion,” she said. “Trust me.”

*

I stared at my arm as the blood ran down the tube. A whole bag of bright, crimson blood clipped onto a stand next to my bed. The sight of it made me almost heave again, but I didn’t move. I could feel it coursing into my body, warming me, making me feel alive. It was three am, hours until my family would arrive in the morning and find out. Abstain from blood. I’d already tasted Craig’s blood on my lips, but that had been a moment of weakness. This was a deliberate decision.

“How are you feeling?” the doctor said from the doorway.

“A bit better,” I said. “What’s your name?”

“Katherine, I told you, Dr Katherine Stone.”

“Ah,” I said. “I knew you were a Kate Winslet. A survivor.”

She frowned. “You’ll feel more lucid when you’ve had the transfusion.”

“I’m very lucid,” I said. “Everything is so much clearer. I might run away.”

“Why don’t you rest,” she said as she left. “Don’t make any more decisions, OK?”

Run away, I thought, as I stared at the bag of blood running into my hand. I could find a big coat and hat, pack my belongings in a rucksack, slather myself in sun cream, then hide in churches or the empty factories around the Northern Quarter. I’d roam the dark, oily streets of Manchester, a nightwalker, going to outpatients for transfusions. I breathed, letting out a small laugh. Who was I kidding? I’d never do that. I’d be homeless. No money. I had no savings. A beggar. The thought was terrifying.

I squeezed the tube with my fingers, trying to stop the blood. I could rip it out, and when my parents arrived, tell them I was sorry. The doctor had forced me. But that was a lie, wasn’t it? I thought of the hours on the ministry, trying to witness to people, and overcoming my fear, of that moment of joy when I’d said yes to the baptism questions at the Convention, and a Brother had dunked me under the water. I thought of the happiness I’d felt when thousands of Witnesses sang together, knowing we were the chosen ones who would inherit the earth. But now, I wasn’t part of that. I was no longer in The Truth, but I could still tell the truth. I’d have to tell them what had happened; it would come out anyway. I’d need more transfusions in the future. And after that? “Disfellowshipped,” I said aloud. No one would be allowed to speak to me, and if I want to be reinstated, I’d have to sit at the back of the hall until I’d shown enough repentance.

I looked at Craig’s note on the bedside cabinet with the carefully written phone number. For years, I’d dreamed of us courting and getting married. But now the thought of living in his high-rise flat in Salford Precinct, of lying in a bed in a dank room while he explained his new ideas and told me what to think made me feel suffocated and depressed, let down by the ordinariness of my romantic dreams.

When I could get out of bed, I’d screw up the paper and throw it in the bin.

I released the tube and let the blood seep into my hand, feeling my skin prick with warmth, awakening the euphoria. Leaving was a lone thing. Porphyria on her own.

ZoeLambert

About Zoe Lambert

Zoe Lambert has published short stories in various journals and anthologies. Her linked short story collection The War Tour is published by Comma Press, and she's working on a new collection exploring chronic illness and caring. She lectures at Lancaster University.

Zoe Lambert has published short stories in various journals and anthologies. Her linked short story collection The War Tour is published by Comma Press, and she's working on a new collection exploring chronic illness and caring. She lectures at Lancaster University.

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