I went back to Rita in the waiting room. He looks like Bob Monkhouse, I said.
We waited for almost an hour, staring at the plastic orange chairs and the paint peeling off the walls. A junior doctor wearing a polkadot tie appeared. He wasn’t much older than me.
I’m just going to take some blood. Come this way.
Another room. Legs shaking.
He drew my blood, put it into three different tubes and labelled them.
Do you know what’s wrong with me? I asked.
He smiled at me but didn’t answer.
Arched window. Muscle biopsy, early September 1984
I lay on the trolley and gripped the nurse’s hand. The surgeon and student stood over me, green and gowned.
Elegant legs, said the surgeon. We’re going to do a needle biopsy. You’ll just feel a little prick and then some pressure.
I shut my eyes.
He checked the area was numb and cut into my leg. I could feel the blood dripping down the parts that weren’t anaesthetised. Something pressed hard, down to my bone. I gripped tighter onto the nurse.
Hard then nothing.
Well done, Andrew, you’ve just done your first muscle biopsy! the surgeon announced triumphantly.
(Yes, well done, Andrew! A fanfare of trumpets for Andrew, please! I don’t really mind that you used me as a guinea pig.)
The surgeon patted my arm. I’m going to do another one. Nothing to worry about.
More pressure. More skilled.
They gave me those stitches that melt away. I was limping for ages. Andrew’s scar still gets in the way when I’m waxing my legs.
I think he was a virgin.
The yellow outpatient card on the kitchen pin-board had become my social calendar. My next engagement was an EMG – an electromyelogram. A needle attached to an oscilloscope was inserted into the muscle on the back of my arm and I had to move my finger up and down ‘til my arm ached.
It’s the beginning of October 1984, a new term! We’re looking through the round window.
The Junior Honours students are waiting for the Head of Modern Languages to address them. They’ve all done their year abroad. They’re grown up now. But where’s Helen?! We can’t see Helen!
That’s because she’s at home in bed. Or maybe she’s on the couch.
Her symptoms have signed a lease behind her back and moved in permanently. They like living in her muscle tissue. It’s nice and warm there.
Ivan comes to stay some weekends. He studies in the spare room. He writes essays on liposomes and leaves behind half-eaten oranges. It’s his final year.
Jana’s got a new flatmate, Beryl, who’s doing French and English. She’s a busty punk with a harelip, who loves cooking. She’s an amateur opera singer.
She sounds like good fun, I say.
It’s like living with fucking Puccini, Jana replies.
A week before my twenty-first, I was summoned to Bob’s consulting room for the second time. He was expressionless as I sat down on the orange chair.
You have a whole range of abnormalities, he said. Your muscles aren’t producing energy normally.
Why not? I said.
We think you have ME, myalgic encephalomyelitis. It’s a post-viral syndrome, triggered by the Coxsackie virus, in your case. There’s no cure and it can last for five years. We’re doing some clinical trials which we would like you to take part in. We’ll be in touch. Can you ask your mother to come in now?
I came out and Rita went in. Someone had left a Daily Record on the chair next to mine. I picked it up and looked at the front-page photo of Princess Diana with her six-week-old baby.
When Rita came out of Bob’s room, her eyes were watering.
On the way home in the car, I hoped we’d crash and that I’d be killed instantly and Rita would walk away without a scratch. I kept thinking of the David Bowie song Five Years:…steady drums, louder and louder and louder…high, violiny bit.
Helen has a diagnosis! Hurrah! Hurrah! Hurrah! She has blah-de-blah-de-blah, it’s official! She’s got Malingerer’s Elbow! She’s chronically fatigued! She’s a yuppie with flu!
Whatever your point of view, she’s fucked.
9
New Blood
TERRIFIED. GETTING WORSE. No one can help me. Even my hands feel ill.
Myra’s given me amitriptyline for the muscle pain. Amitriptyline’s really an antidepressant but in low doses acts as an anti-inflammatory. I’m scared it will make me artificially happy. I’ve dried up, I have no saliva and my eyes feel like stones – a side effect of the drug. When I tell Ivan, he says, You’re losing all your juices.
Helen’s twenty-one today. She’s opted for a quiet do. In fact, she’s decided to stay in bed! Let’s join her on this happy day.
Her friends and family have come to her bedside, bearing gifts.
Jana’s given her a red Yves Saint Laurent lipstick. Rita and Nab have given her a compact stereo. Ivan’s given her a dressing gown from Miss Selfridge – a print of white cotton covered in red kisses – and a bottle of Rive Gauche. Sean’s given her Flaubert’s Parrot, Julian Barnes’ new book. Granny and Grandad have given her £25. Brian’s given her a table with squint legs that he made at woodwork. Peter’s sent her a huge basket of Body Shop goodies. She has lots of cards with a dual message: Congratulations on the key of the door! Get well soon!
She thanks everyone politely. Her arms and legs are injected with poison. She doesn’t have the strength to peel an orange.
Rita has made beef stroganoff (the cows haven’t gone mad yet) and fresh cream meringues. Helen has her birthday meal on a tray in bed. She has a sip of champagne. Jana sits with her and makes her put on her new lipstick. Helen feels like a clown, a grotesque invalid wearing bright red lipstick and titanium earrings. She’s had her hair cut short and layered (Marion came round last week).
Jana chats away about her dissertation on Zola and who her flatmates are sleeping with. Helen interrupts her quietly, I wish I was dead, Jana.
When Nab comes up with the meringues, Jana and Helen aren’t saying much.
After the party, Ivan gives Jana a lift back up to Glasgow. They feel so sad and helpless about Helen. They just want her back.
Later, they comfort each other in Jana’s bed.
I can’t take this for another five years. How can you feel so ill and not be dying?
I wish we lived in a house without stairs. Sean gallops up and down them all day, his friends too. I don’t know how they do it.
Christmas passes and she barely notices. She is dipped in nausea. She counts the number of cards they get with penguins – eight.
Ivan stays for a few nights, but he goes back to Dundee for New Year.
Richard’s parents have invited everyone next door for Hogmanay. Helen sags into a red cord bean-bag. She’s wearing her new dress from Miss Selfridge. It has sweeps of purple and beige paisley pattern and a huge forties collar. It goes down to her feet. She has fawn suede boots to match. People keep coming up to her and asking how she is. Clare looks at her with pity.
She feels swallowed up in paisley swirls.
Heather and Archie are there, their neighbours on the other side. Heather is pregnant after two miscarriages. She is thirty-six. She doesn’t care if it’s a girl or a boy. Helen tells her she’d like to knit something for the baby when her arms are less weak.
After the bells, Helen goes straight home. Rita wants to go with her but Helen says she’ll be fine.
At home she lies down on the sofa in the dark and cries her eyes out. Afterwards, she puts the Christmas tree lights on and makes hot chocolate. After the hot chocolate, she lies on the floor and listens to Nana Mouskouri on Nab’s headphones.
Helen’s having one of her conversations. Her face is swollen from crying. She probably won’t mind if we eavesdrop.
helen What are you doing today?
stranger I’m going to see Dance With a Stranger after work. What about you?
helen Oh, I’
m getting new plasma. I’m bored with the stuff I’ve got, so I thought I’d get some new stuff. It’s all the rage.
stranger Where do you get it?
helen You get it on the NHS. I’m taking part in a clinical trial. I have a mystery illness called blah-de-blah-de-blah.
stranger Why’s it called blah-de-blah-de-blah?
helen Well, it’s controversial, nobody really understands it, except for the people who’ve got it. Bob, my doctor, thinks the new plasma might flush it away. My own antibodies might be making me ill. The new plasma will be free of antibodies and might make me better for a while. My muscles should feel less weak.
stranger I see. Well, good luck.
helen Thanks. Enjoy the film.
stranger You too, enjoy the clinical trial.
Everyone’s hopes are pinned on the plasma exchange. Out with the old, in with the new! Light at the end of the tunnel! Keep your chin up!
February 1985
It was like being hooked up to a dialysis machine. Your plasma was separated from the blood coming out of your right arm, new plasma was spun in, and the blood went back into your left arm. The new plasma was from a Polish donor. The technician told me I had great veins and that I might feel faint during the proceedings.
It took three hours. He told me what Highers his son was doing and what colour of carpets him and his wife were getting for their new house. When it was over he said, That’s you, you’re half Polish now. He handed me a see-through bag of my old plasma. It was the colour of dirty goldfish water. A porter wheeled me back to the ward and delivered me to Bob. I had the bag of old plasma on my lap.
How are you feeling? the game show host asked.
Like a rag doll with a brain tumour, I replied, handing him my old antibodies.
Dinner was a choice of scrambled egg or mince. I forced down some scrambled egg and threw up later in the shower, crouched down on the hospital tiles, crying onto the Pears soap. The sick swirled around the gleaming drain before clogging it up like sawdust. I had to press it down into the holes with my fingers. I didn’t want the other patients to see any traces.
The girl in the next bed was called Fizza. She was a medical student. She also had the mystery illness and was getting new plasma. She’d missed most of her second year. We’d had similar symptoms but she’d been diagnosed more quickly because her dad was a doctor and believed her. I asked her if her dreams were more vivid and violent since she got ill. She said it was like being at the cinema. I told her I was always dreaming I was being chopped up or that I was chopping other people up until there was nothing left of their bones.
We shared a room with another two women. Karen had lupus and Fiona had myasthenia gravis. They were getting new plasma too. Karen’s face looked like it had been finely sand-papered, and Fiona’s right eye drooped. She’d been diagnosed after having her baby. We wondered if we’d all be related after getting our new plasma.
In the evenings, the television room was commandeered by old women wearing slippers with circles of pink fur at the ankles. They had no visitors and watched High Road with watery eyes.
Fizza’s visitors were sad and serene. Her mum wore Asian clothes and sat by the bed knitting her sadness into a bright pink cardigan. The cardigan was to cheer Fizza up. Her wee brother Kashif was well behaved and polite. Her dad was wearing a tweed suit and had sad eyes. He smiled at me and asked how long I’d been ill. I hope the plasmapheresis will help both you young girls, he said. You will be back to your studies in no time!
My visitors seemed rowdy next to Fizza’s.
The first night, Rita chatted with Fizza’s dad about the prevalence of Coxsackie B4 in the west of Scotland while Nab padded around the corridors looking for a nurse to put the Asian lilies in a vase. Ivan had nicknamed me Looby Loo when I said I felt like a rag doll. Sean sat on my bed, moping because the girl he fancied had got off with someone else at the Owners-Occupiers Association disco. Brian gulped his way through the Lucozade.
Fizza’s mum didn’t speak, she just kept knitting. Brian went over and told her that his mum was knitting him a jumper too. His mouth was orange and fuzzy from the Lucozade.
At eight-thirty on the dot, Fizza’s family said goodbye to her quietly in Urdu. Kashif smiled at me shyly as he left.
The nurse had to remind my family it was closing time. Ivan kissed me and said, Bye, Looby. Time to go back in your basket! Brian couldn’t stop laughing. Did you hear what he said to you, Helen? It’s time to go back in your basket! Did you hear him?!
Fizza and Fiona and Karen thought Ivan was gorgeous. The nurses thought the orange lilies were gorgeous, but they were like hallucinations on my bedside cabinet. They were too bright and hurt my head.
On my third afternoon, Jana and Ivan came in with Joe. They’d been out the night before and Joe had got drunk and told Beryl she looked like a haggis. She had wept most of the night. Jana had told me before that the kids in France where she had taught on her year out had slagged her rotten because of her lip. I wished Joe hadn’t come in.
Two minutes after they’d left, Ivan ran back. I miss you, Looby, he said softly. I really miss you. I just wanted to tell you.
He lifted my hand and kissed it.
I wish you could stay, I said, but you better go, the nurses’ll chase you.
He kissed my floppy hand again and left.
I had another two plasma sessions with the man with the new carpets, and Bob had put me on scary immunosuppressants – prednisolone and azathioprine – to reduce the new antibodies I was producing, and huge unswallowable potassium pills. Possible side effects were an increased appetite, a moon face and excess body hair.
Helen can’t get enough to eat. She laps up bowls of cock-a-leekie soup like a greedy cartoon cat (with three slices of bread and butter!). She develops a craving for cream eggs, especially the ones wrapped in green foil. Her face grows round as the steroids circulate in her blood, protecting her new plasma. She thinks of them as minders, even if they are a bit toxic. For the first time in her life, she has acne.
She has to go back to the hospital weekly to have her blood monitored. One time they tell her that her white cell count is dangerously low, a result of the azathioprine therapy. Make sure she doesn’t get a cold, the polkadot boy doctor warns Rita, it could be dangerous. That’s a hell of a responsibility, Rita replies.
They reduce the drugs gradually. Helen can’t stand the texture of chocolate in her mouth anymore or the smell of Pears soap.
The new Polish plasma had done fuck all. Rag doll dragged round the block by an Alsatian, spat out on the carpet.
stranger What did you do today?
me I had a shower and made a cup of tea.
stranger Is that all?
me I tried to wash my hair but my arms were too weak to lather.
stranger That’s a shame. Are you able to read to pass the time?
me Sometimes, but my arms get exhausted holding the book. They feel like they’re burning. And my head feels like it’s being sawed…I’m reading The Naked Civil Servant just now. It makes me laugh. Quentin said he’d get really upset if the kettle wasn’t pointing the right way.
stranger They say laughter’s the best medicine.
me You must think I’m really boring.
stranger Yes, but it’s not your fault, is it?
me I’ve been invited to Rachel’s twenty-first but I can’t go. I’m fed up not being able to go to things. I feel like Cinderella.
stranger It must be so frustrating…[searching for another cliché]…after all, these should be the best days of your life.
We were all guilty of cliches.
Have to get worse before you get better.
Tomorrow’s another day.
Light at the end of the tunnel was the favourite, but my symptoms continued to synchronise themselves in a vicious kaleidoscopic pattern and all I could see was black.
I felt afraid on my own and would listen for Rita’s key in the door if I wasn’t sleepin
g. She had most afternoons off from work. She’d bring me up lunch on the blue tray and tell me the gossip from the library. She’d massage my back and legs with deep heat treatments. I constantly smelled of camphor. My daywear had long ago blurred into nightwear. Sweatshirts and leggings for all occasions. Occasions being:
Sleeping. Eating. Having shower. Having bath. Having to sit on toilet to brush teeth ‘cos legs so weak. Having to change hands halfway ‘cos arms so weak.
Crying. Wanting to be dead. Praying even though atheist.
Waiting for phone calls, visitors, letters.
Waiting. Waiting. Waiting.
Fantasising about: going to work wearing a suit from Next/being on honeymoon with Ivan/dancing, dancing, dancing/inter-railing/running on the spot in a red tracksuit like the athlete in the Lucozade advert.
Looking at photos of other self in other life. Tracing finger over old self, a smiling girl in a hockey team. My hockey stick lay like a corpse in the back of my cupboard, club foot poking through my clothes, reminding me of my frailty. I had tried to throw it out twice, but Nab had brought it back in.
Crocheting white squares. I’d started a baby blanket for Heather.
Conjugating French verbs when my head wasn’t too skewered, so I didn’t forget.
I listened to the radio a lot. There was one DJ I hated. He was always going parachuting or skiing and he took it all for granted. I liked the shipping forecasts and the fishing news. The price of whiting soothed me. I also liked classical music except when it got trumpety and bombastic – then I wanted to kill the people in the orchestra for being so military and noisy. If I moved the radio diagonally and bent the aerial all the way back, I could get French radio stations at nighttime, hissing and fizzling.
The State of Me Page 6
