Billygean.co.uk

I know you shouldn’t ascribe illnesses personalities. I know God isn’t victimising me (well, any more than he victimises anyone else), and I know I didn’t do something in a former life.

But you know what?

I feel like I am being toyed with, a cat with a mouse.

I felt bad for a week, got better, went back to work, and feel worse again. But not worse in a flu-like sense. It is a bit like trying to walk in a swimming pool.

But, as I was talking to MindReader this evening whilst once again spooned in his arms, babbling about trends and relapses and how I’d never be able to have a career, he said one thing:

“But the last relapse was smaller than the original illness. So your next relapse will be smaller still.”

And there we are. A trend within a trend. Even though, right now, I can’t stagger to the dishwasher again, I am still getting better.

“I do worry sometimes,” Friend says. “Because he’s older… that he might want things sooner than me.”

“I worried about that too,” I say. MindReader is four years older than me. “But I figure if MindReader wants babies with me he will also wait… if he loves me enough to want kids with me, you know?”

“I know,” she says, sipping her tea. “It’s a big decision. Besides, they’re aware we’re younger!”

“I mean, we are so not there yet. If ever. I don’t want – that lifestyle now,” I say.

“Nooo,” she says. “I like to leave my young people and go out at the weekends!”

Friend is a youth worker.

“I mean – a baby!” I say. “Jesus, I don’t want a baby now.”

“And definitely not a baby Jesus,” she says.

“Although,” I say, “that might be quite cool.”

“And you’d make a lot of money.”

“We’re not mature enough for kids are we?”

“Definitely not.”

“It wouldn’t be in my top ten,” I say to MadFather, “but there’s a lyric in The Animals Were Gone…”

MadFather and I are discussing our top ten favourite songs. Accidental Babies by Damien Rice has already made it into mine, along with, oh, every track from the Cardigans’ Long Gone Before Daylight album.

“Is that Damien Rice, too?”

“Yes,” I say. “He says ‘I love your depression, and I love your double chin.’” I confess after a glass of wine my eyes tear up slightly at this.

“That’s beautiful,” MadFather says. He looks at me for a moment. “Does MindReader still say things like that?”

“Yes,” I say.

I smile slightly. Someone recently said to me that their relationship was ‘like how it was in the beginning again’ and I confess I didn’t really know what they meant; I feel exactly the same as I did when I first fell in love with him under the blossoms three years ago at Birmingham University.

In my other relationships (oh, okay, relationship) I noticed a kind of dulling after a couple of years; slightly less sitting too closely and slightly more eye-rolling. But with MindReader I think it’s fair to say we both remain completely infatuated.

“Often,” I say. “But he’s quite shy and English about it. He does something else almost all the time though…”

“Oh?” MadFather says.

I think for a moment. We fell in love over coffees and lectures and dirty text messages. I soon realised that THAT was what people meant by electricity; not only lurches in my stomach whenever his blue eyes met mine but that fluttery, tingly feeling I get even to this day when we watch University Challenge together.

But I don’t mean that. And I don’t mean how I feel when he analyses my illness with me, or cooks my favourite meals or spoons me to sleep every night.

I mean something else.

And this is the thing about MindReader. He often compliments me directly, but, more often, he does something different.

It’s something to do with his half-smile, his questions, his interest in me. He has a way of behaving – even when taking the piss – as if I am his centre. It is his “what have you done?” broad-smiling remarks when I slink in guiltily from the burnt-smelling kitchen, and his “what products were in your bath today?” questions.

This quality is in our daily lunchtime phone calls and in the emails in between. It’s in a spontaneous trip out to Tesco while I coo over gluten-free sausage rolls and he laughs next to me. It’s there when we dance in the kitchen and when we kiss in the car at traffic lights. It is everywhere.

“He just makes me feel like I am – important,” I say. “I have never felt so treasured.”

“Ah,” MadFather says. “I see. So it’s like he compliments you in everything he does and says to you? Because all the time you feel so loved?”

“Correct,” I say.

The woman in white stands next to the Give Blood van. As I approach she makes a kind of thumbs up gesture to me. I slow down and shake my head.

“I actually don’t think I can give blood,” I say.

“No?” she says, and I feel the need to explain myself lest she think I have syphilis or something.

I take a breath and then expel it slowly. For how can I actually explain how I feel? How my legs didn’t used to work, or the bruises I got under my skin because my body forgot how to make platelets?

One word springs to mind: faulty. Even now.

“I don’t weigh enough,” I lie; I am in fact one pound over 8 stone now.

“Oh of course,” she says, running her eyes over my stick like arms.

I walk on and blow my nose again. I have a cold, you see.

And that’s the thing about this illness. My life has become some sort of risk assessment. If what I had IS caused by some universal virus, should I give blood and infect someone with it? But then again, should I stop kissing MindReader lest I infect him? I think that would have happened by now.

And there are all the other risks too. Should I lock my healthy self in a room for two years to build up my immune system? Or should I carry on going to the office and dancing too close to other people at parties?

It is easy to be (relatively) healthy and optimistic, but on the verge of a virus I confess I go to pieces slightly. What if the next decade, or more, is an endless boom and bust cycle of getting well, getting a virus, being bedridden and getting well again? Always getting well – the other possibility does not bear thinking about – but never getting BETTER.

I walk past a row of shops and find myself memorising them, like somebody about to go into prison. I breathe deeply and smell the scent of spring; of evergreen trees and just a hint of blossom.

I shake my head in the sunlight and try not to remember that summer that MindReader carried me into the garden and lay me amongst the flowers like some funeral for a living person. Just.

I feel my glands with my hands. They are all up, like stones again.

I walk some more, get on the train, and go to work.

I blot a piece of cotton wool on the teardrop of blood that oozes out of my arm.

“Okay?” JayJay says. JayJay – he calls himself that, and didn’t even require me to make up a nickname for him – is my specialist, written about here, here and erm, here.

“Okay,” I say, shrugging, finally a veteran of the needle.

“Those platelets are behaving better hey,” he says.

I lift the cotton wool and observe the tiny puncture wound, the lack of miniature haemorrhages under pale skin.

“I guess so,” I say, and, by force of habit, score one point against my name and zero against M.E’s.

“Will it come back?” I say. JayJay looks surprised.

“Do you think about that a lot?” he says quietly, his cider-coloured hair shining in the March sunshine.

Since he is a specialist, and not a stupid GP angling for me to finally admit I’m actually depressed, I tell the truth.

“Every day,” I say. “I think about it every day.”

And the rest. In every action – if I do X can I get away with doing Y? Will my body punish me with 200 bad days on the trot where I can’t answer the door to the postman or paint my toenails? And more – if I do X, Y and Z, will it (whatever ‘it’ is) punish me by never getting better, stuck in a perpetual loop of styling my hair and putting on make up and never seeing anybody and taking it all off again at the end of each day?

JayJay seems to be picking his words carefully. “It can come back,” he says eventually.

I grip the plastic arms of the chair.

“Yours was quite severe.”

I wave a hand. In all my googling I have come across people so ill with M.E that they couldn’t read books or talk to their families.

“So it’ll come back…”

“In some ways,” he says. “You might have small bouts of it following colds, you might always watch your energy levels.”

I think of my future, holidays and (maybe) babies and wonder if that’s all beyond my reach.

“But you’ll get better,” he says. “If nothing else we know you can recover.”

“And by ‘better’ you mean…”

JayJay smiles and I wish he knew the meaning that phrase holds for me. “All I mean, Billygean, is that you might never completely forget you had it. You might always need slightly more sleep than normal. You might take one week instead of three days to get over a bug. You might get M.E symptoms following those bugs. For a time.”

I think of the day I collapsed when posting a letter and smirk. One week for a bug I can handle.

“But I don’t in any way expect to see you again,” he says. “Most, aside from the odd virus, stay in remission.”

Remission. I hate that word. A brief, hopeful interlude between illness.

“So it won’t, you know, come BACK come back?” I say non-sensically.

JayJay moves his mouth around in a weird gesture of uncertainty. “The odds are no,” he says eventually.

I discard my cotton wool into the bin and leave the sick room behind.

“Left up here,” MadFather says as I steer along the dark street. Jessica is, for long and complicated reasons, in the back of the car, yelping at cats.

“Left?” I say and then – remarkably – remember to indicate.

“Yes, we’ll head towards that roundabout we just went on,” he says. “One of my students has difficulty with left and right.”

“Really?”

“Yes, so I noticed she wore an engagement ring so I -”

“An engagement ring?” I say. Somehow I feel by the time you get married you should know left from right. “How old is she?”

“Seventeen.”

“Seventeen! God I am glad I didn’t marry the person I was with when I was seventeen.”

“And who was that then?”

I think for a moment. I was first kissed at eighteen. “Er – no one.”

“Billygean?” MindReader says as he walks into the kitchen.

“I know I look mad,” I say.

I am transferring flour from a big plastic bowl into a small plastic bowl and peanut butter from a small glass bowl to the big bowl. And that is one of the most boring sentences I have ever written.

“What are you doing?”

I DON’T explain that I am transferring various ingredients around our kitchen because autistic answers like that can irritate MindReader. “I ran out of mixing bowls!” I say. “Because I’m making two batches.”

“Two?” MindReader says, leaning a freckly arm against the doorframe. I notice peanut butter approximately where his elbow is and weigh up the pros and cons of saying something.

“One nutella, one peanut butter,” I say. For what could be better than nutella or peanut butter cupcakes? ESPECIALLY when made with about a kilogram of cholesterol lowering butter! Healthy(!).

“So what are we doing?” MindReader says, and I supress a smirk. He always ends up involved.

I indicate the two mixing bowls. “We have to cream the butter and sugar and either peanut butter or nutella in these,” I say.

I grab my t shirt and fan it slightly. I am a slow baker (the weighing, it takes so long!) and I pre-heated the oven in our very small kitchen, oh, an HOUR ago?

“How much is a cup?” I say. “I need half a cup of milk…”

We work out that it is two and a third of a blue scoop thing we normally use for rice. I say we…

“So I need half a cup but since I’m halving the recipe, I need a quarter,” I say. “So half would be one and a sixth so a quarter is half a scoop and one twelfth of a scoop!”

MindReader smiles. He finishes mixing one batch. “Come on then,” he says. “Where is my half and a twelfth of milk?!”

I carefully measure out what I deem to be half and a twelfth of a scoop.

“Oh Billygean,” MindReader says. “Most people wouldn’t bother with the twelfth… They’d say about half would do.” He touches my nose, I think affectionately.

“The twelfth might be VERY important. Now, one egg,” I say with a small huff. “So half in each.”

I beat the egg in yet ANOTHER bowl while the kitchen heats up to about 150 degrees.

I tip up the bowl and all of the egg goes into the mixing bowl.

“Ah,” I say.

“Hmm?” MindReader says, mixing the second bowl. Second bowl? Third? Twelfth?

“I need to get that egg out!”

“Quickly, then, before it sinks in!”

The egg is all weird and interconnected. Everytime I get some on a spoon it all slides off.

“I can’t get the egg!”

MindReader’s mouth quivers. “Hurry!”

I down my spoon and use my hand. Over and over again I grab the slimy egg and over and over again it falls back into the bowl.

“What do I do what do I do?” I say.

“THAT,” MindReader says as I try to grab a fist of curdled egg. “That is EXACTLY what you do.”

I decide that the Eggless Cake will be fine and mix some flour in.

“I think I’m going to go to bed,” MindReader says. He does look rather pale.

“Okay,” I say, lining the muffin tray with cake cases. A baking tray leftover from dinner rests precariously on the hob and my eyes flit again to the peanut-buttered door frame.

“Goodnight,” I say. MindReader kisses my forehead as I begin to spoon out the mixture. “Wish me luck!”

MindReader stares at me for a moment. “You’re only spooning them into the tray,” he says. “I’m not going to wish you luck with using a spoon.”

I concede that he has done rather a lot of the actual hard baking part.

He goes to bed.

I burn the cakes.

And the smoke alarm wakes him up.