The State of Me

by Nasim Marie Jafry

  That’s great, said Ivan.

  I’ll read it out. Are you listening?

  I’ll see it when I come home, Looby. I’m really busy.

  That bastard doctor’ll have to eat his words. They’ve printed another two letters as well as mine. I feel so vindicated!

  See you later. It’s great news.

  As I hung up I could feel myself grinning. I felt as if I’d won a major prize. I re-read my letter.

  HOW I WISH IT WERE PSYCHOSOMATIC

  As a thirty-three-year-old ME sufferer for almost thirteen years, I resented the unprofessional, arrogant tone of Dr C Fox’s letter (31 March) declaring the condition to be not physical. How does he know?

  A lot of research is being done into disturbed muscle energy metabolism and persisting viral infection in people with ME. In my case, it was triggered by an aggressive case of Coxsackie B4 virus in 1983.

  When I was diagnosed with ME by a consultant neurologist in 1984, I had never even heard of it. After an array of blood tests and muscle-function tests, the consultant told me I had a full-house of abnormalities. I assume he meant physical.

  I was a straight ‘A’ student and have a university degree but have never been able to start a career as a result of having this illness. How I wish my symptoms were psychosomatic!

  If Dr Fox were bedridden with ME for just one day, he would know beyond doubt that the disease is physical and he would perhaps cease to be ‘irritated by the ME lobby’. He might be extremely grateful for it.

  I suggest he get in touch with the Persistent Virus Disease Research Foundation – a group committed to researching the causes and pathology of ME. I’m sure they’d be delighted to have him on their mailing list.

  I’m aware that I may be incorrect in assuming that Dr Fox is male.

  Helen Fleet, Dundee.

  One of the other letters was from a woman whose ten-year-old son was ill. He’d missed two years of school.

  I’d take the whole page into work next week and photocopy it to send to everyone.

  On election night we sat up whooping as the Tories fell like skittles. Ivan went to work after only two hours’ sleep. I made a celebration dinner.

  Things can only get better!

  34

  More Questions

  stranger Why can’t you have children if people affected by thalidomide can?

  me I can’t believe you’re asking such an insensitive, ignorant question – how many conversations about my illness do we have to have?! I haven’t heard from you for years and you turn up like a bad penny with absurd questions.

  stranger Just tell me, if a woman with no arms can look after a child, why can’t you?

  me You know why – because of the MASSIVE fatigue and muscle weakness! I’m in tatters after a couple of hours with my niece. It takes me days to recover. How on earth could I look after my own?

  stranger Does it not make you sad you won’t have any?

  me Of course it does, but I’ve just accepted it. If I got pregnant I could end up being bedridden again. I just can’t risk that. It wouldn’t be fair to the child or Ivan or me. It might be more upsetting if I were actually infertile, which is bizarre because the end result is the same, but maybe I’ve tricked myself into believing that I still have the choice, even though I don’t – not really. Sometimes I think if we were rich and had a nanny and cook and cleaner, I would consider it…but I am just so afraid of having a baby I can’t look after. It would be wrong.

  stranger Sorry, I didn’t realise.

  me I have a recurrent dream where my baby turns into a tulip and I crush its head. It’s always a relief to wake up.

  stranger Does Ivan not mind?

  me Ivan says he doesn’t want to have children, but I don’t like to get into it too much. I’m scared he changes his mind. I know his ex at Stanford had an abortion, but he doesn’t talk about it.

  stranger At least you’ve got your niece.

  me I know. And Ivan adores her. I hope Sean and Amber have another one!

  stranger What’s the most you can do these days?

  me On a good day, I can walk a mile, but my legs will be burning afterwards – I need a few days to recover. I’ve occasionally pushed myself to do two miles – it’s always tempting to try and do a bit more – but you end up paying for it. It’s not worth it.

  stranger You still have to be strict with yourself.

  me I’m always measuring out my energy behind the scenes, but people don’t see it. They see you at a party and think you’re fine, they don’t see you resting all day to be able to go, and being wrecked all next day because you went. They don’t see you leaning on walls at bus stops because you can’t stand for more than five minutes. They don’t see how tired your arm gets after beating an egg. They don’t know you almost always have poison in your calves when you wake up. They don’t see you weeping because you’re so tired of it all. Last week, a nun with bulbous eyes called me a lazy girl because I was sitting down on the bus.

  stranger She doesn’t sounds like a very happy nun. What’s your worst day like?

  me I can’t leave the flat, having a shower and making a cup of tea are utterly taxing. I wake up with unbearably weak legs and they stay like that for days or weeks. I haven’t done anything to cause it, it just happens. And the headaches like helmets follow you everywhere.

  stranger But you’re still managing to work one afternoon a week?

  me I’ve been working for a year now! I’ve been off five times. My week revolves around being well enough for Thursdays, I go in from one ‘til five. I am fit for nothing afterwards. Thank God for Ivan. He is my shining knight.

  stranger A lot of people are calling it chronic fatigue syndrome (CFS), aren’t they?

  me Yes, especially in the USA, but chronic fatigue goes nowhere near describing the complexity of this condition. A lot of people have chronic fatigue, especially if they are depressed, but they don’t have ME. But nowadays you often see it referred to as ME/CFS. The terms have become interchangeable. People with ME are very angry about this.

  stranger Would you say there is more acceptance now than in the ‘80s?

  me There is definitely more awareness, and a little more acceptance, you wouldn’t see the term yuppie flu’ now, but there are still psychiatrists who are hell-bent on the CBT and graded exercise approach. They have conceded we are actually ill, but are still convinced our muscles are weak due to deconditioning, and not due to the disease process. However, as I’ve said a hundred times, if any of these blinkered fools were to have ME for a day they would soon change their tunes. Sadly, these are the people who advise the government on my illness.

  stranger I was in Waterstone’s yesterday. There seemed to be quite a few books about it.

  me When I first got ill, there was nothing, now the health sections are full of books. Some are good, others are crap. Meditating and aromatherapy won’t cure you. Neither will learning to love yourself or drinking nettle tea. The best book was written in 1986 by Dr Melvin Ramsay: Post-Viral Fatigue Syndrome – The Saga of Royal Free Disease. It explores the history of ME and the lack of belief.

  stranger What do you think of support groups?

  me I think they can be helpful, especially at the beginning when the illness is so unknown and terrifying, but these days there are groups for everyone with ME – bisexual Christians and Jehovah’s Witnesses. It’s like everything, it can get a bit indulgent.

  stranger What’s the latest research showing?

  me There are more and more research teams springing up, but they desperately need money to develop their theories. Certain viruses and cytokines – proteins involved in immunity – can alter the permeability of the blood brain barrier. They think toxins may be getting through and causing damage.

  stranger So that funny virus you had – Coxsackie – could have caused damage to the blood brain barrier?

  me Maybe. Also a deficiency in fatty acids may cause the barrier to ‘leak’.

 
stranger I also read somewhere they’ve found reduced levels of Cortisol.

  me Yup, that would make sense – I think that’s why the ACTH injections helped me. They’ve found many things, a reduced blood flow to the brain, for example – things you can’t fake. There are still crucial pieces of the jigsaw missing, but the powers that be are not providing adequate money for research. It all comes down to funding.

  stranger Or lack of it.

  me Exactly.

  35

  A Seagull, 1998

  IVAN PHONED AT lunchtime to say the seagull had gone. I drove past this morning, he said, it wasn’t there.

  I’m glad, I said. The poor thing had no dignity lying there.

  How are you feeling?

  My head’s still inflamed, I said. I cancelled work after you left, there’s no way I could help anyone today.

  Okay, see you later. Don’t paint anything.

  Hardly.

  I know what you’re like dabbing everything that takes your fancy.

  I won’t dab. I’ll make dinner though.

  Are you sure?

  There’s frozen haddock I forgot we had, I quite fancy kedgeree.

  I’ve got to go, someone needs me.

  See you later.

  Bye.

  One less thing to worry about: the seagull had gone, and Ivan was in a better mood. I went into the kitchen to make some coffee. The coffee pot – an Alessi, a gift from Lucia when she came back after Christmas, a thank you for staying with us – was lying on the worktop, drying from last night, its dome head unscrewed like a detached cockpit. It reminded me of Lockerbie.

  I drink too much coffee now, it used to make me ill, but now I am immune to it. I love the gurgling noise the Alessi makes when the coffee’s ready.

  I know I shouldn’t feel threatened by Lucia, Ivan’s not interested. He says European PhD students are ten a penny, the hospital’s crawling with them. They’re both going to a conference in Cambridge next week. Ivan’s staying with Sean and Amber. I’m glad he’s not staying in a hotel, then he might be tempted.

  I am worn out with doubting. He stormed out last week and said, When will you believe I love you?!

  He knows when.

  36

  Vélos and Blue Wasps

  IVAN WAS EATING salad from a bag, picking out the good bits.

  Can you leave some for dinner, please? I said.

  I don’t like the red bits, what are they?

  Lollo rosso.

  It’s a bit frilly and pointless, don’t you think?

  I made a face.

  Do you like it? he asked.

  It’s nice mixed with the other leaves but there’ll be no other leaves left if you keep eating.

  I’ll put it in a bowl, he said.

  Can you dress it too, please? Not too much oil, you always drown it.

  Did you get out of bed on the wrong side today, Looby?

  Sorry, I said, I’ve got cramps, and I’m just thinking about something I read.

  Another grim story you’re letting flower in your head.

  A Somalian boy.

  Don’t tell me.

  He was roasted on a spit by Belgian soldiers.

  Fuck’s sake.

  And his mother was forced to watch.

  Jesus.

  He survived, but I keep thinking about his agony.

  Well, stop thinking about it, please! Let’s just have dinner and talk about nothing important.

  That old man phoned again.

  What old man?

  He phoned last week and said, Is that the Italian? I told you, do you not remember?

  Sorry, I don’t.

  It was definitely him. He was havering and wouldn’t hang up. Every time I lifted the phone he was still there.

  Has he gone now? said Ivan, pouring too much oil over the salad, which was mainly lollo rosso now.

  I hope so.

  I’ve been thinking, said Ivan.

  What?

  I know what’ll cheer you up.

  You’re not allergic to cats anymore.

  Better than that.

  What could be better than that?

  I think we should get married.

  Don’t tease me!

  I’m not. I think we should. You’re right.

  But you said people always get divorced when they get married after living together.

  Not always.

  I couldn’t bear it. I just couldn’t go through it.

  I thought you wanted a husband, you like the word.

  I do like the word, it’s a sexy word. Boyfriend just sounds so childish.

  Well, Miss Arsey Lollo Rosso, can I be your husband?

  Don’t mock.

  I’m serious.

  Ask me properly then.

  Will you marry me? he said, getting down on one knee.

  Really?

  Really.

  A hundred times over! I said, throwing my arms round him as he stood up.

  You’re like a Scud missile, he said, laughing, trying to keep his balance.

  Is there a long waiting list?

  No idea.

  We’ll need to phone the registry office, I said. I don’t want a big fiasco, just a wee affair. Are we really going to do this?

  We really are, Looby. Consider yourself wed.

  After dinner we celebrated our betrothal – comme une sucette, like a lollipop!

  Later, I phoned Jana to tell her what I’d always hoped to tell her.

  Arched window. Next day. Research lab.

  ivan I have some news. Helen and I are getting married. Helen really wants to.

  lucia You must really love her.

  ivan Of course I love her.

  lucia I mean marrying someone who’s ill.

  ivan I knew her before she got ill. We have a long history.

  lucia You don’t mind not having children.

  ivan No, I don’t mind. There are enough children.

  lucia You say that now, you might feel different when you’re forty.

  ivan There’s more to life than having kids.

  lucia Does she not want a child?

  ivan There’s no way she could do it.

  [Lucia kisses Ivan on the cheek tentatively, lingers then quickly kisses him on the mouth]

  lucia Sorry. I’ve wanted to do that for ages. I won’t have another chance now that you’re getting married, will I?

  [Ivan doesn’t say anything]

  lucia Helen knows I like you, doesn’t she?

  ivan Helen tortures herself with things that aren’t real.

  lucia And she knows you like me too.

  ivan Nothing ever happened, Lucia. I have nothing to hide. Can you go and check on those tissue cultures, please?

  lucia I’m happy for you both. Congratulations!

  You only needed fifteen days’ notice to get married. And £72. And original copies of your birth certificates. Ivan picked up the forms from the registry office.

  Neither of us knew where our birth certificates were and we argued about who to have as witnesses.

  You had to fill in a section about your parents – IS YOUR MOTHER STILL LIVING? I wished Ivan could’ve skipped that part.

  A week later, we took the forms back and the ceremony was booked for four weeks’ time. They showed us the marriage room. It wasn’t exactly the Chinese Pavilion, but it had a couple of Matisse prints and white lights like globes to jazz it up. Ivan wrote a cheque to the registrar and went back to work. I got the bus home. The woman beside me had a pineapple on her lap.

  The jeweller told us that men get broader rings because a thin ring can look effeminate. I couldn’t believe all the sizes.

  I felt it was greedy to have a wedding list (we were only inviting twelve to the actual ceremony, and we were having an evening reception at the end of the summer in a converted church in Glasgow) but people had been putting pressure on us to make one, so we placed one at Debenhams. We got a free cappuccino. We chose gifts that weren’t too expensi
ve, although what I really wanted was a Bondi blue iMac. Jana had one.

  I bought bridal magazines and went shopping a couple of times but everything I tried on was horrible. One shop had a pile of mannequins outside on the pavement, some were missing arms and legs. It looked so brutal, like the scene of an accident. I wondered if it was a bad omen.

  Ivan had booked a surprise honeymoon but he couldn’t keep it secret. He told me we were going to France and I screamed.

  Whereabouts?! You must tell me!

  Cassis.

  Where is it?

  A tranquil beach town near Aix-en-Provence, he said, sounding like a travel agent. Someone at work recommended it.

  You are a lovely man, I said, taking me to France.

  You’ll need to do all the talking. You’ll be in charge.

  That’ll make a change, I said. Me in charge.

  I look forward to it, said Ivan.

  A week before the ceremony, I had my hair cut and highlighted. The trainee boy who washed my hair asked if I liked sausages.

  The day before, I had a facial and a massage.

  That night Ivan stayed with his dad.

  I did my own make-up: morello cherry lipstick, mascara and a hint of blusher. Rita did my nails. I wore the pale blue dress and Helen Fleet became Helen Cox. The sun was shining and we basked in confetti on the steps of the registry office.

  We went to Auchmithie for lunch, a tiny coastal village north of Dundee. Nab took photos of us on the cliffs. He was our official photographer. My grandad was too ill for the photos, he had vertigo and stayed inside. (How are your dizzy swirls, Father?, Nab was always asking.)

  After lunch, Nab made a speech that made us all cry. I kept looking at my left hand. It was beautiful.

  stranger Congratulations!

  me Thank you.

  stranger Are you all packed?

  me Just about.

  stranger You’re glowing.

  me Ask me what I do, as if you’ve just met me for the first time!