The State of Me

by Nasim Marie Jafry

  me I’ve tried everything.

  stranger Have you tried an anti-candida diet – cutting out foods with yeast and sugar? An overgrowth of yeast can make you tired all the time.

  me I’ve tried everything.

  stranger Can you not build up your strength with gentle exercise?

  me No! Your muscles aren’t producing energy normally. If you climb the stairs you feel like you’ve run a marathon – your muscles burn, they think they’ve done much more than they actually have. And they don’t recover normally.

  stranger You have too much lactic acid in your legs?

  me Something like that. We have faulty glycolytic pathways. Did you know there are three pathways – one aerobic and two anaerobic – for producing energy? They’re continuously operating in all our activities, though one is usually dominant. My ex-boyfriend told me – we’re still really good friends.

  stranger Who would have thought producing energy was so complex?

  me I know, you take your body completely for granted, you don’t care how it works until it stops working properly, and then you want to know all about it…I’m thinking of taking up the shot-put, it uses the anaerobic alactic pathway where huge amounts of energy are supplied very quickly and no lactic acid is produced.

  stranger I like your sense of humour.

  stranger What does ME actually stand for?

  me Myalgic encephalomyelitis. Myalgia is muscle pain. Encephalomyelitis is inflammation of the brain and spinal cord, though some medics say there is no inflammation present. But my brain certainly feels inflamed.

  stranger That’s a bit of a mouthful – certainly sounds serious.

  me It’s always getting new names. It’s also been known as Icelandic Disease’ and ‘Royal Free Disease’ – there were outbreaks in Iceland in 1949 and at the Royal Free Hospital in 1955. There have been outbreaks all over since then. It’s being referred to as ‘Raggedy Ann Syndrome’ in the USA because you feel like a rag doll.

  stranger What about the term ‘yuppie flu?

  me What about it? It’s referred to as yuppie flu’ by those who don’t know what the fuck they’re talking about. I’m not a yuppie and I don’t have flu, though I have asked for a Filofax for Christmas – a fake one.

  stranger What do you need a Filofax for?

  me Nothing. I just want to be fashionable.

  stranger Is it always triggered by a virus?

  me It often happens after a virus – we may be having an abnormal reaction to the virus, or the virus is persisting, but no one really knows. It can also happen after vaccinations and exposure to organophosphates – farmers have had a similar illness after using sheep-dip, but the government doesn’t believe them either.

  stranger Why do some doctors not believe you?

  me I honestly have no idea. Maybe because there’s no single diagnostic test and because they’re arrogant. They don’t understand it, so it’s easier to blame the patient, label them as depressed, neurotic, lazy etc. They say people are jumping on the ME bandwagon, but how can you jump on a fucking bandwagon that you didn’t know existed?!

  stranger I don’t know, how can you?

  me I’d never heard of ME or Post-Viral Fatigue Syndrome or any other mystery illness until Bob diagnosed me…my GP dragged her heels for months, telling me I was imagining it. Thank God for the locum who believed I was ill – Rita called him out one day because I was in so much pain. And thank God for Bob.

  stranger No wonder people with ME get depressed, putting up with such disbelief.

  me Yes, no wonder.

  stranger No Wonder they’re prescribed antidepressants.

  me Yes, no wonder.

  stranger [hesitantly] But antidepressants can’t cure ME, can they?

  me NO! NO! NO! Antidepressants are not curing the physical symptoms, they are just relieving secondary depression. But some doctors seem to think they can prescribe brisk walks and a handful of tricyclics, and send us on our way. It’s fucking ridiculous: I would never take them.

  stranger I’m sorry. I didn’t mean to upset you. It’s just something I read.

  me I think there should be a mass crucifixion of all the GPs, psychiatrists and journalists who don’t believe it is a physical illness. These people are so powerful and are causing so much damage by not believing us. They should be made to pay. They’re making people more ill, forcing them to keep going.

  stranger Do you really feel that strongly?

  me Well, I’m against the death penalty but I’d be happy if they all got ME themselves. That would be enough. They would soon believe in it, within twenty-four hours of having it. I’ll tell you that for nothing.

  stranger Is there a lot of research going on?

  me The scientists who believe in it are researching it, but the government isn’t funding anything. The ME charities – the ME Association and Action for ME – are trying to raise money and awareness, and are lobbying the government. Clare Francis, the round-the-world yachtswoman has it, she was on Wogan.

  stranger Will you ever get better?

  me They keep saying it burns itself out in five years, but that isn’t true – I’ve been ill for five years and one month. I’m really hoping to get back to uni next year. I only need one subject to graduate with an Ordinary degree, but there’s no way I could commute, and no way I could live in a flat. My Honours degree is out the window.

  stranger That’s a shame.

  me I’ve been volunteering at the adult literacy class at the library, two hours a week. My head feels pumped up with chemicals by the time I’ve finished, and my glands are swollen, as if the actual effort of thinking is toxic, but it gives me a routine and I feel I’m doing something useful.

  stranger Do you ever feel sorry for yourself?

  me Not really sorry for myself, more powerless. I think you’re more likely to feel sorry for yourself with short-term suffering. If you’re healthy and you’ve got flu you feel sorry for yourself and need pampered. But if you’re chronically ill you just survive it. You start to appreciate small things. It’s what gets you through.

  stranger You seem very stoic.

  me Believe me, I have many days where I wish this wasn’t happening, or that I was dead, but then I see those poor wee Romanian orphans – shitting themselves in their cots, babies who don’t have a chance from the day they’re born. I want to adopt them all.

  stranger [uncomfortable with expressing emotion] Well, good luck anyway. I’ll be interested to hear how you’re doing.

  me I’ll keep you posted.

  18

  Granny Fleet, Peter and Finn

  WHEN YOU LOOK at your face in the mirror for a long time – just keep staring – you don’t recognise yourself anymore. It’s like when you say the same word over and over again until it loses its meaning. I have been staring for ages and I realise that my eyes are too high up. I’d never noticed before.

  At first I thought it was a wrong number: no voice then a gravelly throat-clearing followed by Granny Fleet’s accusing tones. We hadn’t seen her for years, she’d taken Peter’s side in their divorce and left Rita without a name – she’d never really accepted her son marrying someone from a council house. She still phoned us occasionally, when she was bored or in a bad mood. She looked like a man and was always crunching Oddfellows. She was much better off than my other granny but she used to give us jotters for Christmas and still sent us cheap Christmas cards that you could spit through. Why does she still bother with cards when she hates us? I asked Rita. She’s lonely, said Rita. It makes her feel as if she’s got friends.

  Is that you, Helen?

  Yes.

  It’s Granny Fleet.

  I know.

  I was just thinking about you, there was an article about your condition in the paper. I thought I’d send it to you. It’s very interesting.

  What does it say?

  It suggests that if you had a more positive attitude to the illness, you would have more chance of getting be
tter. You’re in a vicious circle of thinking youll never get better and that’s what’s keeping you ill.

  Granny Fleet, the article is rubbish, I don’t want it. I’ve explained my illness to you before!

  You’ve sunk into a long depression without even knowing it, and your mother isn’t helping by being at your constant beck and call.

  Are you quite finished? I’m going to go, you’re upsetting me.

  There’s no need for that tone, young lady, I’m just trying to help.

  There’s a lot of inaccurate stuff published about ME – you have to have it to properly understand it.

  She cleared her throat so the venom could get out: Are you ever going to get a job, Helen?

  I can’t work, you know I can’t!

  It’s scandalous that you’ve thrown away the chance of a good education.

  I’m going to phone Dad and tell him what you’re saying. You’re a poisonous old woman. Just leave me alone!

  I slammed the phone down and picked it up to dial Peter, but Witchy Fleet hadn’t hung up yet, she was still there, tutting and rasping. I slammed the phone down for a second time and waited for a couple of minutes before dialling Peter’s surgery. His receptionist said he was with a patient. I told her it was important.

  He called me back half an hour later. He said the receptionist had said I sounded terrible.

  Your mother’s been on the phone, dispensing her gems of wisdom, I said. She’s so vicious, I hate her!

  Helen, you know what she’s like, why do you waste your energy getting upset?

  I can’t help it. She told me I should be working and that Rita’s just encouraging me to stay ill.

  Peter sighed. D’you want to go for lunch tomorrow? I’ve got the afternoon off.

  Okay. A late lunch.

  I’ll pick you up about two.

  I want to ask you about mercury amalgam toxicity – I might need my fillings drilled out.

  I’ll see you tomorrow. Just ignore my mother, she’s off her head.

  Bye, Dad…thanks.

  Bye.

  He took me to the garden centre in Helensburgh for lunch. They had a nice cafe with home-made tomato soup with fresh cream and parsley.

  I asked him about mercury amalgam toxicity and ME. I’m not convinced of the link, he said. Why are dentists not more ill than the rest of the population since we’re more exposed to mercury?

  I thought you were, I said. I thought you were all suicidal.

  No more than any other health professionals.

  I’m joking, Dad.

  Anyway, you’ve only got two fillings. I’ll replace them with acrylic if you want, but drilling them out could just release more mercury and you’d have the trauma of the local anaesthetic. I’ve had ME patients who feel worse after anaesthetics.

  Maybe I’ll just leave it then, but if I need more fillings I’m not having mercury. I want white fillings.

  It’s a deal, he said.

  They think it’s the adrenaline that causes relapses, you need to use anaesthetic without adrenaline.

  You’re like an encyclopaedia, he said, smiling. He looked like Sean when he smiled and for a second I could’ve hugged him.

  So how’s your mother?

  You know Mum, I said, never sits down, always looking after everyone. I didn’t tell her about Granny Fleet, she would’ve been furious. Can you believe she said that I’ve wasted a good education?! She knows fine I’ll go back to uni as soon as I can. She doesn’t consider how exhausting the commute would be – I’d have to go in three days a week – or how on earth I would manage in a flat on my own. I’d need a home help.

  Ignore her.

  I’m desperate to get back. I keep thinking it would be great if uni was right next door then I could stay in bed ‘til my classes and come straight home and rest afterwards.

  That would be handy.

  People don’t realise how much energy you need just getting to and from a place.

  Calm down. You’re getting worked up again. Let’s just enjoy lunch. How’s your brother?

  He hardly comes home, he’s always with Nellie. I think he’ll move to London next year once he’s graduated.

  I can’t believe Sean will be graduating next summer.

  Will you go?

  Of course I’ll go.

  You’ve got soup on your chin, Dad.

  He dabbed it off and I felt sorry for him.

  What are you doing for Christmas? I asked.

  Probably go to Susan and her kids in the evening.

  Are they friendly towards you?

  Her daughters were a bit frosty at first but they’re coming round. The son’s okay.

  Will you see Witchy Fleet?

  I have to eat lunch with her, otherwise she’d be sitting on her own.

  That’s ‘cos no one can stand her.

  I know, but she’s my mother.

  Why doesn’t Aunt Dorothy have her for Christmas?

  She’s got the excuse of being in Australia. She’s invited her, but she knows she won’t fly.

  Our Australian cousins are lucky they’ve never had to meet her.

  Is she really that bad?

  Yup, I said.

  When he dropped me off I noticed how thin and flat his hair was. He was only fifty-three but he looked like an old man from the back.

  Penguin count five: they seemed (thankfully) to be out of fashion this festive season.

  Nab and I were playing Scrabble. We allowed proper nouns when Nab was playing and I was trying to get away with DUNOON BATS.

  Bats from Dunoon, I said.

  Come on, Helen, that is not quite correct! he said.

  Be a pal, Nab, it’s Christmas.

  Rita came through to the dining room and told us a plane had crashed into a petrol station in the Borders.

  The next day, the grim truth and the ubiquitous image of the blue and white Pan Am cockpit lying on the ground like a broken neck. (It would take almost fourteen years to convict a Libyan guy for the bombing, based on the shaky evidence of a Maltese shopkeeper.)

  Brian spent Christmas Day shaking his head and saying, It’s terrible about that plane, the same way that he’d said, It’s terrible about the cat, when Agnes died.

  Dear Jana,

  Glad you liked the ‘baffles’ I sent, I just saw them and knew you would love them. I hope they are keeping your feet cosy – is your heating working now? It’s great about your job with Oracle – database manager trainee sounds very important, I am jealous. I am sorry that all the decent men are gay or married but I know you will not be short of someone to dibble with for long. I have some great dibbling news, but will keep it ‘til the end.

  God, I still shudder when I think of Lockerbie – I think of you, not that you would’ve been on that particular flight, but ‘cos you used Pan Am back and forth all the time. Those poor students on their way home for Christmas, and the poor people on the ground, just wrapping their presents and checking their Christmas tree lights. I keep thinking of the pilots falling to earth in their broken-off cockpit. It’s all too horrible to believe.

  Everything else seems trivial by comparison.

  But poor Sean – Nellie dumped him over the Christmas holidays! She went to some lawyers’ ball and met someone. Sean had bought her a gorgeous choker to go with her ballgown and the bitch dumped him. He is utterly heartbroken, but I am glad he can now meet someone who deserves him, she certainly doesn’t.

  My news – there’s a private clinic in Edinburgh giving intravenous vitamin C to rag dolls. The doctor who runs it claims she has fully recovered from ME, but I want to read up on vitamin C more. It has amazing antiviral properties if you take mega doses. There’s an American guy called Linus Pauling who’s really into it, have you heard of him? It’s also really expensive, £500, but Rita says it’ll be worth it if she can ‘get me back’. I visited Fizza last week, she was so bad, just lying in a darkened room. I don’t know how she copes. I took her flowers and she couldn’t even stand the
crackling noise of the wrapping paper.

  Still seeing Callum now and then. He took me up the loch last week and we held hands, I know he’d like more, but I can’t give it, I still like holding hands though. He keeps saying he’s going to Australia.

  I know you disapprove, but I’m still having ambiguous friendship with Ivan. (He takes me up the loch too and we hold hands.) I would like more, but I know I can’t ask. I think he still really cares about me and that is more important. But I could be totally wrong, both these men (or boys, they’re still boys after all) are happy to hold my hand on the Bonnie Banks but maybe they don’t really care a jot. I never ask Ivan about his love life and he is always very guarded. He knows I’d have an eppie if I knew what he was doing. He recently told me that he had had an affair with that Dr Joyce woman he met when he was in India. They wrote to each other for a while and she was going to visit last year but it all fell through. She’s engaged to someone else now.

  Now the juicy news! Nab’s son Finn visited in January and we ended up having incestuous relations! Can you fucking believe it? He is twenty-eight and blonde and handsome and we drank cherry wine that he’d got at Copenhagen airport. It’s really strong and sweet, I just had a tiny amount but he was knocking it back. I knew he liked me but couldn’t tell if he was just being brotherly. We ended up making out as you would say, but there wasn’t any nudity – that would’ve been too weird. He’s just come out of a five yearer and is obviously on the rebound. He’s a geologist and says he might go to work in the Middle East to get away from his memories. I think Nab and Rita knew there was a frisson between us but they didn’t say anything – I mean it’s not illegal, is it?

  What else? My life is so boring compared to yours.

  I was babysitting Zoe the other night. She is very sweet, three and a half. I plaited her flame red hair and read her a bedtime story. It’s strange to have a child upstairs, knowing that its well-being depends entirely on you, even if just for a few hours.

  I’m still volunteering at the literacy class. I really enjoy it. It’s so rewarding – learning to read as an adult must be harder than learning Arabic.