I like to see how long I can hold a conversation with the people who come to visit me.
There’s Mum and Dad, of course, and there’s Susie – sometimes with them both, sometimes with just one of them and sometimes on her own (though I suspect either Mum or Dad is waiting outside my room at those times: Susie’s only 12 and I can’t imagine Mum and Dad letting her come here on her own, especially not now.
Some of my friends come from time to time too: Jessica always comes by for an hour on Saturdays, she’s my best friend. Occasionally she’ll bring one of the others with her – Janey or Lucy or Claire – but more often than not she just comes alone. Nana and Gramps were here every day at the beginning, but they live up in Yorkshire and I guess they had to go back after a while. Father Cowley comes by religiously (ha!) Sundays, and I’ve even had a couple of visits from our form teacher, Mrs. Vincent, as well as various neighbours and friends of my parents, some of whom I’ve known by name my whole life, all of whom I know by sight.
What I’m trying to get across is that I get a fair number of visitors in any given week, some regulars and some unexpected. Fewer now than at first as a general rule, though it still varies from week to week. All this makes for a variety of different possible conversations, but one of the first things you get to notice when you’re in my condition is how truly predictable people seem to be. Perhaps that’s unfair: one of the first things you get to notice is how truly predictable people seem to be when they’re trying to hold a one-sided conversation. Actually, that’s unfair on me now: one of the first things you get to notice is how truly predictable people seem to be when they’re trying to hold what they think is a one-sided conversation (after all, I am answering them). There!
Now, the point is that when people regularly engage in a conversation where they can’t hear the responses, they tend very quickly to build up little structures to help them keep track of where they are now, what they’ve already sad and what they’re going to move on to next. It’s like Dad when he has to make phone calls. He claims to hate doing it, so he actually sits down and writes out all the things he wants to say before he even picks up the phone to start dialling. That might not seem so strange if he did it only to make business or other official-type calls, but some time ago he extended the practice to include members of the family, so it’s clearly some kind of progressive phobia. I wonder how it’ll end. Maybe with Mum having to make all his calls for him.
Anyway, once you’ve got a reasonably good idea of your visitor’s typical conversation profile, it becomes possible for you to second guess them and by doing so to actually have something that approximates a real chat. Obviously, you could accomplish the same thing by simply waiting to hear what they have to say and commenting on it, but where’s the fun in that? No; it’s become something of a game for me to see how long I can prolong a normal-sounding conversation, and I do this by anticipating from my past experiences exactly what my visitor is going to say next. Then, before he or she actually does say it, I ask a question to which their next sentences will be the answer.
For example, Father Cowley will tend to come in, ask me how my day was, tell me about the service of that morning and then tell me the latest news on some of his other wards that he also visits here at Newham General Hospital. A typical conversation between us might therefore go something like this:
“Good afternoon Alex. How are we feeling today?”
“Just dandy thanks, Father, how are things with you? Good turnout this morning?”
“Well, you’ll be pleased to know that things are ticking along nicely at church: we had a lovely service this morning and some beautiful hymns. We sang your favourite: The Two Fatherlands. It really is a beautiful tune. And we all remembered you in our prayers, of course.”
“That’s kind of you. Have you been visiting already today or am I your first stop?”
“I popped in to see how Mrs. Jessops is getting along quickly before coming to see you, you remember I told you she broke her hip when she slipped on the doorstep last week?”
“I remember. How’s she doing now?”
And so on. It’s not much but it brings a semblance of normalcy. The trick is to see how long I can keep it up for before whoever’s visiting departs from their usual topics of conversation. On a good day and with someone really dependable like Father Cowley, I can sometimes hi the mark for as long as 20 minutes before I have to subside into jut listening. Not that I mind that, of course - it’s much better than just lying here staring at the wall or ceiling (depending on which way I’ve been turned) - it’s just that it’s so much more companionable my way.
Today, it’s Susie who’s come to see me. I can’t see her because they’ve left me staring straight up and Susie’s managed to position herself entirely out of my field of vision, but of course I can recognise her voice.
Although Susie’s visits tend to be the hardest to predict in terms of what she says, I think I enjoy them the most for that same reason. She makes my guessing game more challenging, but when it’s over I can still really enjoy not knowing exactly what she’s going to tell me but knowing it’s going to be something interesting – we’re only a couple of years part, so we share lots of the same friends and hobbies.
“Hi Lexy,” she opens.
“Hi Suze.”
“You wouldn’t believe the amount of homework Mr. Fox dumped on us today, it’s insane!” (Which seems to be one of Susie’s favourite words at the moment.)
“Wouldn’t I? Don’t forget, I had him two years ago too. Anyway, didn’t Mum and Dad say the other day you were doing homework at Sangita’s house? You could work on it together and it’ll take half the time!”
“I’m serious, Lexy: it’s gonna take all night even if Sangita and I do it together, and Mr. Fox even said he’d been checking our work specially to make sure we’d done it separately! He said our last few assignments had looked a little too similar!”
“I’m sure he’ll let you off. Besides, it’s only Geog.”
“I hate Mr. Fox! As soon as I start GCSEs like you, I’m dumping Geog. I though maybe I could learn Spanish. Sangita’s dad said he’d teach us both Hindi, which would be sooooooooo cool. But I bet the school won’t let us.”
“You could always ask,” I counselled. Well, what else are big sisters for?
“Oh, you should have been there fore this afternoon’s Biology lesson too!”
“Do tell.”
“OK, right. So: you know how Mr. Palten’s like half deaf, right? So that he’s always, you know, spinning round really quickly to check everyone’s paying attention ‘cos he wouldn’t be able to hear us whispering, right? Well, Tommy P was sitting on one of the front desks because Mr. Patlen caught him passing notes to Adam Doveson last week, and he just suddenly starts humming really quietly when Mr. Palten was at the whiteboard. And, right, every time Mr. Palten turns his back on the class, Tommy P starts humming again a little louder. So eventually Mr. Palten can hear this humming but every time he turns around it stops. But then Adam Doveson joins in and then Simon Spencer and pretty soon it’s like all the boys are doing it but Mr. Palten can’t catch anyone and because his hearing’s not so good he can’t be sure where the humming’s coming from or maybe even if it’s really happening and he’s getting redder and redder in the face and you can see that he’s really desperate to catch someone. Anyway, he completely forgets what it is he’s trying to tell us and eventually just tells us to go home and read the rest of the chapter in the text book and there was like 20 minutes of class left so we all got to go home early! It was the best Biology lesson ever!”
I’m really not sure what to say to this one, so I keep quiet (not that I guess I have that much choice). I mean, I always kinda liked Mr. Palten. He’s pretty old, so I guess he’s probably near retiring or something but he always gets so excited about Biology when he’s teaching us. I mean, I’m like Suze and can’t stand the subject personally but it’s so cool that he can still get so worked up about it.
Susie stays with me for about another 45 minutes or so I guess before she has to head off to Sangita’s for homework and then home for dinner and, later, bed.
Before she left, however, Susie showed again why she’s the best sister a girl could have. She unrolled a huge sheet of paper (one metre by three quarters of a metre) on which she’d drawn a spectacular seaside landscape. Susie may hate many of her subjects at school but if there’s one thing she really excels at it’s art – and this picture is no exception. It’s fairly simplistic, depicting a long but narrow strip of bleached white sand leading into seas of azure-turquoise that are tranquil and inviting. The sun is high in the sky, and out on wooden stilts over the water is a small wooden hut with a single gangway that leads onto the beach. Closer in to the viewers perspective to the bottom right hand side of the picture are several palm trees bearing ripe-looking coconuts, as well as two or three that have fallen to the floor. Further out – right on the horizon – is just the suggestion of a small sailing ship, the white triangle of its sail breaking the horizon fuzzily.
It’s a picture I’m well acquainted with, having found it in a travel brochure two years ago: the Hilton hotel in the Maldives, apparently, and where I told Suze I had decided I was eventually going for my honeymoon. Suze not only reproduced the picture herself in perfect detail, she’s had some of my closes friends write short ‘get well’ messages on the beach, where the black pen can easily be seen and read amongst the pale sand. Ever so carefully, Suze stood up on the chair next to the bed and, with frequent glances towards the door to check for interfering doctors and nurses, taped my new picture to the ceiling where I’ll always be able to see it.
I’m not sure I have words to describe my feelings towards my little sis just then. Though I’m always speechless more or less by definition, this time I was speechless in raw-throated gratitude. If I had any control over such things, I know I would have been crying. Bless Susie: we’ve always been close but this one act shows it more than anything else I could possibly imagine. Susie gave me the only gift that I can really enjoy.
I’m not expecting any other visitors today – they generally never come later than this unless it’s Mum or Dad, and they’d have some in with Suze if they were going to come – so it’s going to get pretty dull for a while until the nurse comes to do the usual nurse-type things. As far as I’ve been able to make out, these consist of:
· checking my drip
· taking my temperature and blood pressure
· SOME MORE THINGS TO INSERT HERE; and
· a host of other things I either don’t get to see or don’t understand (like reading the dials on all the machines).
Ask a doctor what the biggest threat is facing someone in a condition like mine and they’ll probably reel off a list of long words ending in ‘itis’ that you’ve just got to extra careful of – or rather, they’ve got to be careful of on your behalf. Whatever they say, they’re wrong: take it from me, your biggest enemy is boredom.
Visits – from anyone, even the regular medical check-ups – are always welcome as a way of relieving the tedious nature of too much time spent in exclusively your own company. Actually, it’s not even just that (though it would be enough given time). Because you’re not just in your own company, you’re surrounded by other people and you can hear them and sometimes even see them reach out to each other in a companionship you just can’t join. It’s frustrating. And it’s terribly lonely.
Especially at night. I find I don’t need to sleep as much as I used to, probably because I don’t physically exert myself as much as I used to either. Whatever the reason, I rarely sleep longer than three or four hours a day now. I’ve come to look forward to these periods of blissful unconsciousness because there’s no need for entertainment and therefore no chance of boredom. For the rest of my waking life, I have had to devise a series of diverting games and mental exercises to keep myself occupies between visits and sleeps. I also stick to a very strict schedule: my typical day (and believe you me, this is one occupation in which you can really describe a day as typical) therefore looks like this:
· 0500: wake up; index dreams of previous night by subject matter and persistence of memory of dream
· 0515: sort through and relive dreams sequentially, beginning with those I’ve remembered best. (This may seem counter-intuitive to you but when it’s one of the only ways of killing time, you don’t want to save the good ones till last and come back to them only to discover you’ve forgotten great swathes of them in the meantime. The only exception to this is if there’s a particularly tantalising dream that I remember little of and I just can’t wait and want to try to bring back the feeling and memories immediately.)
· 0700: attempt to analyse any particularly weird dreams for hidden meaning (optional)
· 0715-0730: first morning visit from nurse – perfunctory checking of pulse, temperature, drip (bag replaced if necessary; visit last only five minutes but exact time of arrival varies between times shown)
· 0730:
Of course, all these times are approximate – I don’t see the time so often, unless I’m lucky and the wall clock happens to be in my field of vision – but the regimen is pretty well fixed. There’s a little room for flexibility in which particular games or mental exercises I choose each day, but the order of play is not open for negotiation anymore: I’ve become quite the creature of habit.
I have several different methods of keeping myself occupied and my mind sharp, which I guess I’ve only just really hinted at so far. It would take quite a while to list them all here and even longer to explain them fully and, while time is the one thing I’m definitely not short on, I’m only going to give a flavour of what goes on behind my eyes now. Can’t give all my secrets away after all! Anyway, when you’re in my condition what goes on behind your eyes is pretty much the only thing you’re
a) in control of; and
b) able to keep private (my sample schedule should be more than enough proof that I’ve got little enough privacy left to me)
So, I essentially have two different ways of filling up my time when not engaged in a visit or in the middle of an examination or wash. The first way is what I refer to as ‘Mental Callisthenics’. These are the gruelling little mental tortures I put myself through at least twice daily in order to make sure that I stay sharp and focussed. I’m missing a lot of school here and, while I can’t teach myself, there’s no need to let go my current knowledge.
Only marginally preferable to boredom, there are a number of different exercises I use that fall under the Mental Callisthenics brand and these include: Maths, English (Lit), Geography, History, French and German. I know they’re unimaginative names, but as the primary purpose of these exercises is to ensure that if I’m missing my schooling I’m at least not unlearning all my hard work, I thought that keeping them under these headings would further help me to keep focus, especially if I’m feeling lazy and trying to convince myself to skip them. This list, then, represents all of the subjects I’d begun to study for my GCSEs, with the exception of the ‘Combined Sciences’ (Chemistry, Physics and Biology) because I think equipping myself with a mental Bunsen Burner might be a little dangerous.
Again, within each of these subjects, there are a number of different methods I can employ to prevent my mental muscle from atrophying to the same extent as my body muscle no doubt has or will. For example, if it’s time for a Maths lesson, I might spend my time seeing how high I can get in the Fibonacci Sequence before the next official interruption occurs. Because the Fibonacci Sequence can be continued indefinitely and becomes swiftly and progressively more difficult (especially when you can’t write things down), this is a great exercise with lots of longevity. If I’m not in the mood for the Fibonacci Sequence, or simply feel I should be honing different maths skills, I might search for ever higher prime numbers, or practice multiplication and long division. To be honest, it’s all fairly simple stuff compared to what I’m used to, but I do have to keep it all in my head, which I find discourages the use of more advanced stuff.
When I’m studying English, it’s a more memory-based system by necessity. I recite poems to myself, concentrating on theoretical pronunciation, enunciation and vocal expressiveness. Sometimes, I’ll give myself a vocabulary test, simultaneously testing my spelling. To do this, I pick a letter of the alphabet and think of all the words in the language I possibly can that begin with this letter, then spell them out in my head. I know 147 words beginning with the letter ‘Q’, though whether I’m spelling them all correctly is another matter – I guess I have no way of checking that until I’m out of here.
I have similar systems in place for my other subjects. They’re not much, but they’re better than nothing.
The second major way of killing time on my own is by playing games. Naturally, these are all imagination games and in many ways I suppose you could file many if not all of them in my Mental Callisthenics folder, I’m not convinced that my teachers would necessarily agree with that decision. In any case, I like to keep these separate because, frankly, they’re fun and if I don’t make some sort of distinction between them and my ‘school’ work, I know I’d just find excuses to lose myself in one of these all the time. This way, I have my work and rest periods as well as a way to reward myself for going through the mental sweat of the callisthenics.
Really, there’s no limit to the kind of things I do with my imagination games. Previous examples have included transposing myself into starring roles in all-new episodes of various of my favourite TV shows (so you might have seen me as a new ensign on Star Trek’s Voyager star ship, boldly going where no 14-year-old has gone before), exploring possible future avenues my life could take (so that you might find me with the Red Cross in Darfur or Afghanistan, helping those less fortunate than myself as I swell the ranks of those unsung heroes by one) and, now, eschewing the comfort of the Hilton hotel in the Maldives to live my own Swallows and Amazons style life on my beach. From time to time, I also indulge in some of what are probably considered the more typical daydreams of girls my age, a husband, children, a house with a swimming pool – that sort of thing – but it gets a little depressing to be honest, so I usually stick to more ambitious works of imagination. They’re more challenging and engrossing in any case, and the primary goal is always to eat up time. Time is always the enemy.
Some of them I enjoy so much that I try and leave them in a place to which I can return. This very story is one of those – a sort of autobiography of my life over the last few weeks. Of course, I don’t know that anyone will read it – even if I could remember the whole thing to write down – but it keeps me occupied.