Porphyria

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.