After two weeks I’d put on a couple of kilos – enough to bring me out of the danger zone. Only then did they gradually reduce the sedatives.
When I finally came round I opened my eyes and saw a blank wall. They’d turned my bed around to make it easier to get to my tube. I stared at the dried brush strokes on the wall for a few minutes before slowly scanning the room.
To my left was a bag of milk feed still attached to me, the pump forcing the Ensure liquid into my body. On the other side of me sat Evelyn, one of the Dutch agency nurses who worked on the ward.
I moved my hands over my tummy and hips and could immediately feel I had put on weight. That immediately triggered a full-on rage. I’d been lying there zonked for a couple of weeks and all the time they had been fattening me up like a pig.
I can’t believe they’ve done this to me, I thought. After all the hard work I’ve put in to be thin and they’ve treated me like this. Well, this is it now. The fight really begins. At that moment I was so angry I could have fought a giant.
The first thing I did was try to yank the tube out of my stomach. I grabbed hold of it and pulled as hard as I could. It was stitched in, so there was no way it would come out, and the pain was so agonising I screamed. But I still kept pulling.
Nurses ran into my room and tried to get hold of my arms but it was like my superhuman strength had come back to me and it took two of them to hold me down while another stuck a sedative jab in my bum.
And so it continued over the next few days. Whenever I regained consciousness I would straight away pull at the tube or try to prise it out with my fingers. But as soon as the nurses heard my gasps of pain they’d be there with their syringes to sedate me again.
I poked and prodded that wound every moment I was conscious. I became obsessed by the hole in my stomach and couldn’t keep my hands away from it. Within days it was infected from so much fiddling, oozing a green goo.
Even that didn’t stop me, though. I’d just dig my fingernails deeper into the pus and flesh, trying to unpick the stitches which held it into me.
There was about an inch and a half of tube inside my stomach and another six inches hanging out which was attached to my feed bag. My constant quest was to get my fingers to the bottom of that inch and half inside me. Some days I got my fingers right down into my stomach by poking about so deeply. The pain was excruciating but I couldn’t stop myself. I stretched the hole by pulling it so much and have left a permanent scar.
One morning, about two weeks after the operation, I was sitting at the dining table with some of the other kids when suddenly everything felt distant. I could still hear them all chattering but I felt a hundred miles away. The next moment I was lying on the ground, jerking and twitching.
The nurses and other kids ran around me, trying to put me in the recovery position while a Crash team was called from Accident and Emergency.
At that moment Mum arrived at the unit but the nurses wouldn’t let her in because everything was in a state of total confusion. ‘Let me in,’ she was shouting, banging on the door. She thought I must have dropped down dead. She’d been half expecting this moment for so long and now she was terrified it was going to happen with her unable to reach me in time, stuck behind a locked double door.
I lay on the floor, unaware of anything, for several minutes before coming to. Then, a couple of days later, I was watching television with Mum when the same thing happened again. More seizures and blackouts followed.
The doctors were really worried. But so they should have been. It was a problem they had created by giving me so many fucking drugs.
Over the next couple of months I had nine seizures – they started with something like an epileptic fit and then I’d black out. I was taken to a neurology ward for tests but they couldn’t work out what was causing them. Then they stopped as suddenly as they had started.
My life fell into a routine where they would attach the feed bag to my stomach tube every evening. About half an hour beforehand they would give me a sedative to shut me up and then hope I would sleep through the entire feed.
I became desperate to fight those drugs. They were stripping out of me what little energy I had left. So, when they’d given me my evening jab, I would sit bolt upright in bed chattering to Nina long after she had drifted off to sleep. Then I’d be up and down to the toilet dozens of times – anything to prevent myself nodding off.
The drugs always won in the end, though, and soon I’d be slumped against my pillow. But I often woke in the night and if I saw the feed still pumping into me, all hell broke loose.
As the weeks passed, though, I realised that if I really wanted to win this battle I needed a plan more sophisticated than just screaming and shouting every time they tried to feed me. Soon my every waking hour was dedicated to dreaming up methods to beat the tube.
Each night after the feed had finished, a nurse would disconnect my stomach tube from the feed bag tube, slip a cap on the end of it, then tape it up against my skin to stop it getting caught when I rolled over in bed. That process normally woke me up and I’d lie there dozily watching her do it. One night, though, I noticed some of the feed came dribbling back out before she capped the end of the tube. Aha, I thought, this is worth trying.
As soon as the nurse moved away from the bed I ripped the tape off my tummy, slipped the cap off the tube, rolled on to my side and held the tube pointing downwards. Soon the feed was pouring out of it like vomit on to my mattress.
Brilliant, I thought. I’m back in control.
From then on I was doing it every night. The feed went everywhere, over my clothes, my pyjamas, my duvet. Even my teddy bears got soaked. The carpet was sodden under my bed where I hoped no one would notice. Within days the entire room stank of stomach juices. I stank of stomach juices. It was disgusting and made me wretch but I didn’t care.
After a week the nurses worked out what was going on and as soon as they heard me moving around after a feed they’d be straight over armed with their syringes.
But still I didn’t give in. There were fewer nurses on during the night shift and I knew that if one of them was busy with Isobel or one of the other demanding kids, there wasn’t much one of them could do to stop me on their own.
Some nights they would have to call for emergency doctors and nurses from other wards because they couldn’t cope with me. I was like a demon child again. Because if I knew there was a chance of getting that feed out of my body, I’d do anything to achieve it.
They decided they would have to return to feeding me during the day as then there were more staff around and it was easier to control me.
But it remained a constant battle and I never, ever got tired of fighting. I was stronger than they thought and I was determined to prove it.
By now, winning had become an end in itself. Yes, of course I still wanted to be as skinny as I could but beating the system had become my main obsession.
When I was being fed by the pump during the day, I would have to pull it along on a stand with me everywhere I went.
On days when I was well enough I would have lessons in the Great Ormond Street classroom. In I would go, pencil case in one hand and pushing the stand with the other. As the weeks and months rolled by I lost all sense of time, as had happened in all the other institutions I’d been in. One minute I’d be making Christmas cards to send home, the next it was Easter baskets, then Halloween pumpkins. Sometimes it felt like those art and craft lessons were the only thing connecting me to the rest of the world’s calendar. I never did much other school work beyond art but I liked listening to what was going on.
Then one day I came up with a brilliant plan. The next morning I put on four pairs of socks before I arrived for morning classes. Sitting behind my desk, I carefully disconnected the bag from my tube and let the feed drip on to the floor. After a couple of minutes I wiped up the milky pool with the outermost pair of socks still on my feet. Then I leaned down, slipped the dripping-wet socks off and put them in m
y pocket. Five minutes later I did the same again with the next pair of socks. And again. And again.
Brilliant. That was 20 minutes’ worth of calories wasted. Another victory to me.
I got away with that for a couple of months before one morning one of the members of staff helping out in the classroom screwed up his nose and sniffed suspiciously.
‘I can smell Ensure,’ he said after a couple of minutes. ‘Nikki Grahame, if you have disconnected your tube…’ he went on, walking menacingly towards me. As he reached where I was sitting he looked down to see a large, milky puddle under my desk. So that was the end of that.
Then I came up with another scheme. Isobel, the girl who had reverted to being a baby and couldn’t walk or talk, was tube-fed through her nose. Her milk feed was 1 calorie per millilitre and mine was 1.5. Every morning the milk feeds would come up from the dietician’s office on the hospital trolley. I would wait until the nurses were busy with one of the other kids, then go down to the trolley and swap the labels so that Isobel was getting 1.5 cal per mil and I was getting just one. Genius!
After a couple of weeks Isobel started putting on weight and I started to lose weight and no one could understand how. I got away with that for a good few months until one morning I wasn’t quite careful enough and one of the nurses noticed a corner of a label had peeled up. Everything fell into place and it was all over.
As a punishment I was put on total supervision, which meant I had a nurse with me all the time – even when I went to the loo and had a shower.
But even then I came up with new scams. At night there were only two nurses on duty but if Isobel woke up and needed looking after, both of them would be occupied with her for quite a while.
I’d seize my opportunity and sneak into the nurses’ station, to rifle through their drawers and pigeon-holes, looking for any notes on my treatment. I’d read my notes and see if there were any plans to increase my calorie intake. Any information like that would help me in my battle.
Because they didn’t trust me they began feeding me through my bag at mealtimes so they could keep an eye on me while I sat at the table with the other kids.
I desperately needed a new way of sabotaging their schemes. One night I was lying in bed when ‘ding’ went a bell in my head – I’d had a brainwave. I already knew that if I pushed out my stomach muscles after a feed some of the milky fluid would drip out of the tube. But it was never enough to make much difference. And that was when I came up with the idea of using a syringe to suck it out. Clever, eh?
Next morning when the nurses were doing bed rounds I wandered casually up to the trolley and snatched three syringes. Then, straight after mealtime, I dashed back to my room, plunged the syringe into the end of my tube and sucked out some liquid. It was so easy. I squirted the fluid – a mixture of Ensure and stomach juices – into an empty water bottle. Within a couple of minutes I’d removed almost a litre of liquid from my stomach.
Before long I was nicking syringes at every opportunity. Immediately after every mealtime I would hurry back to my room to start work. I was never allowed to close my bedroom door in case I was up to something, so I’d have to stand with my back to the corridor, pretending to look inside my wardrobe as I sucked the feed out of my stomach. Once I’d transferred it into an empty water bottle, I’d open my bedroom window and lob the bottle out.
It all went brilliantly for a couple of months. My weight wasn’t going up and I was delighted. Then one morning one of the office staff from downstairs turned up on the ward and I could hear a commotion going on outside my room.
Five minutes later my key nurse stormed in. I loved Sam so much and felt we had a special bond – I even became obsessively clingy about her and didn’t like her treating the other kids. But this time I knew I’d upset her really badly from the red flush across her face.
‘We’ve had someone from the office downstairs up here complaining,’ Sam said, her normally laid-back voice stretching in irritation. ‘She says she can’t see out of her window any more because the fire escape next to it is piled high with plastic bottles filled with what appears to be rock-hard milk and stomach juices. Would you care to explain, Nikki?’
Of course I didn’t fucking care to explain. I’d been sussed out. I stormed out the room in a seething rage. From then on, only one syringe was allowed on the ward at any time as they couldn’t risk me stealing them again.
I still tried to force liquid out of my stomach after feeds by pushing out my tummy muscles. But it was only drips and drops. Even so, the stench of vomit and stomach juices became overpowering in my room. And the carpet by the side of my bed was hard with dried stomach juices.
For more than a year I didn’t eat anything properly at all. It sounds incredible but the only things that went into my mouth were water and one cup of black coffee a day.
Finally they decided to give me another chance and put me on three very high-calorie glucose drinks, called Forté Juice, each day. Each carton was the equivalent of a meal, so it was a pretty big deal for me. But they were still making up the calories by tube feeding as well.
For a while it worked OK, although as my weight crept up I became increasingly unhappy. By June 1996 I’d reached 40 kilos (6 stone 4 lb) and I hated it. I could feel the fat gathering around my hips and stomach and it repulsed me. In the ward bathroom there was a mirror but it only showed down to my waist. I’d stand up on tiptoes trying to see my whole body but it was difficult. What I could see was bad enough, though.
One night I was lying awake in bed when the bell in my head sounded again. An even more ingenious plan.
I slipped out of bed and sneaked into the open kitchen on our unit. I picked up an armful of Forté Juices and then went to the toilets, where I squeezed each of them down the sink until they were all empty. Then I hid them in my wardrobe until the next morning, when I stuffed one up my jumper before leaving my room.
At breakfast I sat down and waited for the nurse to bring my normal morning carton of Forté Juice. I opened it but as soon as she turned away I switched it with the empty carton. For the next 20 minutes I sat there sucking a straw, pretending to empty the carton. ‘Finished,’ I said holding it up at the end.
‘Well done, Nikki,’ the nurse replied. But I hadn’t drunk a thing. It was another massive win for me. Later on I emptied the still full carton of Forté Juice down the toilet, leaving me another empty carton for the next mealtime. I got away with that every mealtime for months. The weight was really dropping off me again. I was back on top and it felt brilliant.
By this time I was sharing a room with a girl called Parjeet. She was a small, skinny girl who had anorexia but also had to permanently walk around with an oxygen tank because she had breathing problems. It was more a psychiatric problem than a physical one, though.
We never got on. Maybe it was ‘professional’ anorexic jealousy. There were no more late-night chats like Nina and I had enjoyed. It must have been awful sharing a room with me and my mad tantrums and screaming. But it wasn’t great sharing with Parjeet either. Her oxygen pump used to wheeze away all night and she would grass me up at every opportunity. One day she discovered my secret stash of Forté Juice cartons and went running to the nurses.
I didn’t even find out what she had done until the next mealtime when I sat down and the nurse poured my Forté Juice into a glass. I knew the game was up from the smug look on the nurse’s face. I was so angry they’d found me out that I flew into a rage. ‘Fuck that!’ I screamed, pushing the glass across the table. ‘I’m not drinking it!’ And I didn’t.
I hated Parjeet for that. But I knew she’d do anything to stop me from being thinner than her.
From then on I refused Forté Juice at every mealtime but it was hardly a victory as they just put me back on full tube feed instead. For a while I was gutted. But I never gave up. I kept on pushing feed back out of my tube and exercised like crazy every moment I was alone. At the same time I made sure they thought I was gaining far more than
I really was. Sam had a set routine for weigh-in days. She pulled the scales slightly away from the wall and made me jump on. But what she didn’t realise was that I was still close enough to the wall to lay my palm flat on it and push down with all my strength while she was looking at the reading.
I could add a good 3 kilos (6½ lb) by doing that and pretty much decide how much I wanted to weigh on any particular day. I refused to be weighed by anyone but Sam. All I had to do was throw a tantrum if anyone else was on duty and they would decide it was easier to wait for Sam’s shift.
I did all the obvious stuff too. I’d drink loads and loads of water before they weighed me to make myself heavier. A 1.5-litre (1¾ pints) bottle of water weighs about 1.5 kilos (3½ lb) and I could easily drink two or three of those before a weigh-in.
But that’s one of the oldest tricks in the book – any dimwit anorexic could tell you that ‘waterloading’ is vital to boost a weigh-in. What is amazing is that Great Ormond Street didn’t realise I was doing it and the doctors couldn’t understand how the scales said I was putting on weight when I was looking skinnier than ever.
Then one day my luck ran out. I was sitting in the classroom when the ward sister, Nicky Harris, came to the door and said, ‘Nikki, come with me, we need to weigh you.’ I knew at once there was no fooling Nicky. She took me to a different room and placed the scales slap bang in the middle of the floor. They showed I was 4 kilos (9 lb) less than at my last weigh-in.
It was another battle they’d won, but the war went on.
CHAPTER 13
GET ON AND DIE
I felt like a prisoner who keeps digging escape tunnels only for each of them to collapse or be discovered.
Every attempt to keep the calories out of my body failed. I was more depressed, angry and obsessed with being thin than ever before.
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