Inchworm (3 page)

Soo Yong helps me to a drink of water and makes me more comfortable.

‘Khob Koon,’ I conjure the words for thank you from my winter in Thailand years ago. She is so pleased. I wish I knew more foreign words; there are many nurses and doctors here from other countries.

I keep thinking about the person who died so I could live. I know he or she didn’t actually die so that I can live, but that’s what it feels like. I feel almost like I wanted her to die so I could use her heart and lungs. That’s a dreadful feeling. Do I miss my old organs? No, I don’t think so, except that I knew the noises my old heart and lungs made inside my chest, the thumping and wheezing and erratic heart beat like an express train going through a tunnel. Now, I am aware all the time of these strange organs and I really can’t tell if the odd feelings I get are a result of the trauma of the operation or are they signs of something not being right? Katy reassures me that all is now well and I mustn’t worry. This is just a blip and they will adjust my medication until they get it right. In the hospital folder we were given that tells all about transplantation of organs,
chronic
rejection is the worst thing that can happen. The arteries become blocked and then you get heart failure. I’ll have to have regular tests to make sure that isn’t happening for one to three years post transplant.

The most common causes of death following a transplant are infection or rejection of the heart. Patients on drugs to prevent rejection are at risk of side effects: developing kidney damage, high blood pressure, osteoporosis (thinning of the bones) and lymphoma (a type of cancer that affects cells of the immune system). Coronary artery disease and bronchiolitis (in which there are obstructions in the airways of the lungs) are a problem too.

All this I learn from transplant information leaflets.

So, anyway, I’m probably not in for an easy ride – more of a ride on a mad elephant who might throw me down and trample on me. I think of my immune system cells as burly bouncers who stalk around looking for gatecrashers, uninvited guests at a party. When they see my strange new heart and lungs, they desperately try to eject them from my body. I must take the immunosuppressants – drugs that suppress the immune system so the new organs are not damaged. Never must I forget to take the drugs, even if they bring me other new problems. Hopefully those problems can be cured by yet more drugs.

There’s a big, black bird, some sort of crow, in the tree outside my window, hunched and ugly, peering in at me.

‘Close the curtains, Mum.’

‘Why, darling, are your eyes hurting?’

‘No, just close them.’

‘Please?’

‘Please.’

NEGLECT—TO TREAT CARELESSLY; TO FAIL TO BESTOW DUE CARE UPON

NOSTALGIA—HOMESICKNESS; SENTIMENTAL LONGING FOR PAST TIMES

MUM HAS A
dictionary that we use for Scrabble when we need to look up the correct spelling of a word or when we’re not sure if a word exists. I’m resuming my self-education. I am choosing one or two new words to use each day. I used to do that
BT
. It’s a good way of learning stuff that I have missed out on by not going to school. My education has been sadly neglected. Mum says there have been other more important things to think about – like keeping me alive. I am
Girl, Interrupted
(a new game – naming people after movies). Brett’s mum was my home tutor for a short time before I came into hospital. Maybe I could still have her if I can’t go back to school straight away when we go back to Cornwall?

Precious is so much more active than me. He is doing well in physio. I expect that’s because he was fitter before he became seriously ill, if that makes sense. And he hasn’t had any problems since his transplant. I haven’t yet thought of a film name for him. He’s a difficult one.
The
African Queen
is out. He’s definitely too hunky. Perhaps he could be
The Heart is a Lonely Hunter
– a book by Carson McCullers, which was made into a movie, but I haven’t seen it. It’s a very sad story about a deaf-mute who runs away and is befriended by various misfits and eventually commits suicide. No, forget it, I’m not going to name him that. How about
The Boyfriend
? Except, of course, he isn’t.

‘Are you looking forward to going back to Zimbabwe Presh?’

‘Yes, of course, Gussie.’ (He has a very attractive lisp and says yeth and of courth and Guthie.)

‘But maybe we will stay here and the rest of the family will join us when they can.’

‘Could you do that?’

‘I don’t know. I hope so as I’ve got a better chance of survival here.’

‘What do you mean?’

‘In my country, things are not so good. The hospitals are full of
HIV
Aids patients and there are not so many doctors or nurses. My mother is one of Zimbabwe’s top surgeons. She thinks we should get out now, before things get even worse.’

‘What sort of a doctor is your father?’

‘A physician’ (This sounds so cute with his lisp – ‘phythithian’ – I mustn’t giggle.)

I wonder how it would be if that happened to me, if I had to leave my birth country to have the health care I need to survive. Mum would give up everything for me, I know, even her home. So would Daddy, I’m sure.

‘I’ve been to Kenya. I loved it.’

‘I have never been to Kenya, Gussie, but Zimbabwe is very beautiful. It has mountains and lakes. There are many wild animals and birds. Perhaps if I go home you can visit me?’

‘Do you have elephants?’

‘Many elephants.’

‘I would love to come. And you must come to Cornwall. There are sandy beaches and rocky cliffs and little stone villages and harbours and we have dolphins and… and seals and seabirds. Do you like birds?’

‘Yes, I have been birding with my school in the Eastern Highlands and Gonarezhou.’

He is as grave as a man. His eyes fill. I’m scared he might cry. Is he homesick for his country and missing his father and sisters? Will he ever go home? Will I ever go home? I hide my own sudden tears.

I read in a book called
The Snow Geese
that homesickness used to be recognised as a real illness. Soldiers serving a long way from home suffer from it and have to be kept busy so they don’t have time to think. The same thing applies to boarding-school children. Keep them busy and they won’t mope. It’s not treated as an illness any more but it should be as it makes people sick with yearning, with melancholy and nostalgia (I’ve used it!) and a desperate need to see their home. I like moving to new places, it’s exciting. I was never homesick when I was in Kenya or some other tropical country when I was little, but I think older people feel it badly sometimes, and need to be at home, or in their own country before they feel better. Even though Mum is old she’s always been good about travelling with me and enjoys making a home out of a strange house.

Nomads can’t have the gene that gives people homesickness. They move all the time, making camps along the journey. They must have the opposite of homesickness, homephobia.

I think of Cornwall as my real home now, not London where we lived with Daddy before Mummy left him. London means hospital to me now: tests, discomfort, waiting rooms, machines, sickness, pain, drugs, fear. The staff are all kind, they never make us feel that we are being a nuisance, but we are nevertheless worlds apart from them – the healthy, the fit and the free. I feel like I’ve lived here forever. We transplant patients are like asylum seekers or refugees, waiting for fate to decide what happens to us.

Precious is doing so well he’s going home today. Or rather, he is being transferred to the hospital flat where his mother has been staying since his transplant.

‘What’s happening with your father, Presh?’ He likes it when I call him that.

‘What’s happening with yours?’ Oh very clever, Precious, I didn’t realise he was aware of my parents’ marital problems. My mother must have told his.

‘He’ll be back soon. We’ll be staying at his flat. I’ll keep in touch if you want.’

‘Yes, I want.’ We hug carefully and I smell pepper and medicated soap. I wonder what I smell of? I think English people are supposed to smell of butter. I think I smell of medicines and especially of the dreadful stuff I have to swallow to stop getting thrush. He is much taller and broader than Brett, older.

‘See you, Gussie.’ A blackbird pipes a warning as a dog barks from a car in the hospital car park. I wish I was getting out too. But I have plenty to plan. We’ll have to register me at school so I can start in the summer term (I hope) and there’s my uniform and stuff to buy. I wonder if they do cricket in the summer term? I quite like the idea of playing cricket. I could wear my England cricket cap that Alistair gave me. My maternal grandmother used to play cricket. Brett will be there – and Siobhan, of course. (Hope I’m not in her class.) But I mustn’t live in the future, which might not happen. Live each moment now.

I have a hospital pet. It’s a spider that lives in a high corner of my room. The cleaners haven’t seen it and I’m not telling them. It’s one of those very thin long-legged garden spiders. Its web is too far up for me to examine unfortunately, but I am aware of my spider busying herself, keeping house and hunting food, which must be hard in such an antiseptic environment. I haven’t seen any flies. Her name is Eensy Weensy. Is she aware of me in my bed? It must look like a huge white ship marooned in a calm sea of blue floor. Will my ship ever get home? As long as I’m not shipwrecked I’ll be fine. Voyages can be boring and exhausting, but they eventually end at a safe harbour. We went on a ship from Southampton to the Canaries once, when Daddy was still with us. It was awful, really rough, and Mum was seasick for three days, even when the ship stopped rolling. I was fine. Daddy and I played deck chess and watched for dolphins and whales but we didn’t see any.

At least I have Rena Wooflie, my soft toy dog, to keep me company. She has been everywhere with me since I was three. Mummy bought her for me in Mombasa, when we were on our first winter away. She used to take me away from English winters because if I stay I get chest infections, which turn into bronchitis or pneumonia, so I miss school anyway. Being away each winter has probably been the only good thing about having a rare congenital heart disease. I have met people from Kenya, Thailand, the Canary Islands and the Seychelles.

I love Kenya best, because of the wild-life; I hope I will be able to go again one day soon. Once we saw a family of baboons crossing the road – the biggest holding the hand of a little one, just like humans, watching the traffic to see when it was safe. And I saw a huge monitor lizard in the bushes close to our house, and thought it was a dragon. I hid the cast off skin of a large cicada in Daddy’s shoe as an April Fool trick, and it really fooled him. That was the only time he came out to be with us for a short time. He had to go back to work. Anyway, they didn’t get on when he was with us. There were raised voices and clenched teeth – Mum’s.

*

Precious hasn’t been in to see me. Hope he’s okay. Wish he was here – we could play chess. Mum hates chess. She’s bored, I can tell. She’s standing at the window and gazing out.

‘What can you see, Mum?’

‘Mmm?’

‘Tell me what you see, I can’t see anything from here.’

I’m feeling low and blue today and have come back to bed after the physio session.

‘There’s a gold carriage and four white horses with white plumes on their heads and they are stopping outside. I think they’ve come to take you to meet your prince.’

‘What can you really see?’

‘Not a lot. Sparrows pecking at something. Rain on the window pane.’

‘Is the crow there?’

‘Crow? No, no crow. Cars in the car park. It’s like a Sunday afternoon when I was a child.’

‘How do you mean?’

‘Dull. Dull and grey and gloomy. No one having any fun. Fun is banned on Sundays, or it was then.’

‘Tell me what you did when you were little.’

‘I was a lucky child. In the holidays I played outside all day until teatime. I’d take jam sandwiches onto the beach for my lunch. When I was about ten I had a racing bike, second-hand, of course, I helped pay for it with my pocket money. I went everywhere on it, miles from home, into the countryside.’

‘Weren’t you ever attacked by paedophiles or perverts?’

‘No, of course not.’

‘So, why didn’t you let me do that when I was ten?’

‘Life isn’t that simple any more, Gussie. Too many cars for a start.’

‘Did you have animals?’

‘We had lots of chickens, some rabbits, a cat and a dog.’

‘Oh yes, Tiddles. I remember. What sort of dog was it?’

‘Lion Pekinese – Foo. My Mother did a Terrible Thing. Foo was ill. Lost the use of his back legs, dragged himself around. She took him to the vet and left him there, she said, for the vet to make him better. But of course, the vet put him down… put him to sleep. I kept expecting him to come home and I worried about him. She should have told me. I can’t remember how I found out.’

‘Poor Mum.’

I suddenly start to worry about my cats. What if Charlie is ill and Claire takes her to the vet and has her put down? I’m not there to look after her. I bet she misses me. She always sleeps on my bed. Will Claire let her sleep on Gabriel’s bed? Or Phaedra’s or Troy’s? Betya Rambo runs away: he’s scared of everything.