One time I kept the tube disconnected for three days, letting the feed drip each night on to the carpet beneath my bed. But when my room started stinking of rancid milk it became clear what I’d been up to.
The machine pumped feed into me at 250 millilitres per hour. But then they replaced it with a super-duper new machine that they were very proud of as it could pump in 400 millilitres per hour. When they used that I could feel the liquid pouring into my stomach. I felt like a car being filled up with petrol. I felt bloated and sick as the rich liquid swilled around my stomach.
One night as they hooked up the new pump to begin feeding me, I just lost it. I couldn’t face another night of it and I exploded with rage, ripped the machine off the stand and lobbed it across the room. That was the end of their smart new machine. Well, until it returned from the menders.
All that time, every mealtime, after a bit of a cry and a half-hearted attempt to negotiate with the nurses, Nina would dutifully put her head down and eat. I felt she was betraying our special bond. And couldn’t she see she was putting on weight? It was frightening and only made me more determined to never let that happen to me.
I became so angry about how much they were pumping into me at night that I started refusing all food during the day.
My weight was now dangerously low. At around 27 kilos (4 stone 3 lb) it was less than half what a 13-year-old girl should weigh.
Dr Lask decided to give me an incentive – if I complied and reached 29.5 kilos (4 stone 9 lb) by Christmas, I could go home for the holiday.
As desperate as I was to go home, I wanted even more to win my battle to be skinny – so I carried on fighting. I couldn’t give up anyway, because the guilt would be too great if I caved in after having achieved so much.
The big weigh-in was set for a week before Christmas. As I stood on the scales and looked down I could see I was 2 kilos (4½ lb) short. My first feeling was simply joy that I’d kept the weight off so well. And I didn’t believe they’d really keep me in over Christmas.
Mum and Dad were called in for another big meeting with the doctors. As soon as Mum came into my room afterwards I knew it was bad news. ‘Sorry, Nikki, but they’re going to make you stay in over Christmas,’ she said. It took a couple of seconds for it to sink in, then I went mad. I didn’t feel anything but rage. I whacked my head against a wall and scratched my face with my fingernails. I raged for an hour with no one able to calm me down until I finally collapsed, exhausted.
This is it then, I thought. I’ll show them how much trouble they have caused not letting me go home and not letting me starve myself to death. This will teach them that all their efforts to keep me alive were just a total waste of time.
I turned and walked quietly back to my room and dug out the paracetamol pills from my bedside drawer. I got a cup of water from the kitchen, then sat on my bedroom floor and swallowed the lot. The water ran out after the first half a dozen and I was gagging as I forced the rest down my throat.
I didn’t think about Mum and Dad or Natalie. All I could think was how sorry everyone would feel when they saw what they had made me do.
I wandered into the day room and lay down on a sofa. The next thing I remember is being carried down to a medical ward. I opened my eyes and there was Nina, in tears as she looked down at me. ‘Nikki, I can’t believe you’ve done this without telling me,’ she said. ‘What about our pact?’
I felt so tired I couldn’t answer. I just closed my eyes and thought how nice it would be for all this pain to be over.
Nina had seen me lying on the sofa, totally out of it, and guessed what I’d done. When she checked the drawer and found the pills missing she had alerted the nurses straight away.
Mum and Dad were called and came straight to my bed on Victoria Ward, a medical ward at Great Ormond Street, where my liver function was being monitored. Although I probably hadn’t taken enough pills to kill myself there was still a danger that with my critically low body weight I could have seriously, even fatally, damaged my liver.
‘You could have died, Nikki,’ Mum kept saying. ‘Please don’t leave us, Nikki. Me and your dad love you so much. We want you to live.’
After a couple of days I rallied but I still wasn’t eating and I felt more depressed than ever. The thought of returning to the nasal tube just filled me with fury all over again.
Then one morning Dr Lask came and sat by my bed. ‘OK, Nikki, you’ve got your way,’ he said. ‘We’ll give up on the nasal tube for a while – but you have to eat.’
He explained they had decided that Mum would have to visit all day, every day, to look after me, bath me and try to get me to eat. The nurses couldn’t cope with me on their own any longer and, besides, the doctors thought I might respond better to treatment if Mum was around more.
But still I wasn’t eating enough and in the last couple of days before Christmas they became desperately worried about me again. I was refusing fluids too and they feared I was becoming dehydrated. All over Britain kids of my age were working themselves into a frenzy of excitement about Christmas. But I was being given a stern warning that if I didn’t get food or drink inside me soon, I was going to die.
On Christmas Day, Mum, Tony and Natalie came up to visit me. I’ve got a photo of me and Nina from that day. I’m wearing a blue Oasis T-shirt and my brand-new Ellesse trainers, which I loved. But I look so haunted and sad in that picture. At that point I was totally out of it from all the drugs they were giving me to keep me quiet plus the paracetamol I had taken. It was a struggle to even stand up, I was so ill. But in my mind I was stronger than everyone.
The four of us sat at the table for a Christmas dinner but it was pretty hard to find much festive cheer. After pulling a cracker with Natalie I sat there utterly miserable. I ate an orange, then watched as everyone else piled into their hospital turkey and sprouts.
Mum must have been desperately forcing out that ‘ooooh’ noise everyone makes while pulling crackers because one look at her pale and frozen face revealed her true terror. She knew full well that it would need a miracle for me to still be alive the following Christmas. In fact the way I was going I’d be lucky to make the New Year.
That evening Dad came up to visit me with Trudi, his new girlfriend. We all did a jigsaw puzzle, although I stood up the whole time – sitting burned no calories.
On Boxing Day morning Mum made the three-hour round trip to see me again. I was so weak and sleepy I couldn’t even speak to her.
‘I’m going to go now, Nikki,’ she said, stroking my head. ‘I’ve got Tony’s son and his girlfriend coming for their lunch, so I’d better get back.’ Her brittle tone told me that she was trying not to cry but I couldn’t do anything. Certainly I couldn’t reassure her everything was going to be OK. I didn’t know – or care – whether it was. And I didn’t want her leaving me for a moment – I was supposed to be her main concern. I stood at the door of the ward looking lost and alone as she walked away, knowing that would make her feel guilty.
Soon afterwards Dad came back to visit. He bounced in the room beaming at me, just like the Dad I had adored all those light years ago. ‘Hello, Nikmala,’ he said. He helped me off the bed and we went into the day room to watch telly. I lay down on the sofa, my head on Dad’s lap, his arm around my shoulders. It felt so safe, so warm.
We must have been there for about half an hour when Emma, one of the really cool nurses, came in and sat down next to Dad.
‘Having a good time?’ she asked Dad, smiling, before her gaze moved down to where I was lying.
Suddenly her expression froze and she leaned forward and grabbed my wrist, feeling for a pulse.
‘Oh my God, she has passed out,’ Emma shouted out to the corridor. ‘Quick, get one of the doctors in here now.’
Dad was horrified. He thought I’d been lying there quietly enjoying the telly but I’d actually slipped into a coma. It was caused by the combination of the drugs I was on, the paracetamol overdose and my critically low weight.
Mum was just taking off her winter coat in the hall at home after getting back when the phone rang. She knew it would be Great Ormond Street.
‘You’re going to have to come back,’ said the nurse. ‘Nikki is critically ill.’
I was rushed down to Helena Ward, another medical ward, for immediate observation. It turned out I was severely dehydrated. The nurses were desperately trying to insert a drip to try get some fluid back into me when Mum and Natalie arrived.
Time and time again the nurse searched for a vein to put the drip into. But I was so ill and so weak that my veins were almost impossible to find. Even when she found one, it was so weak that it collapsed.
By the time Mum and Natalie got back to the hospital, I was still unconscious. Mum was terrified that this time it really was the end.
‘What’s happening?’ she asked desperately. ‘My baby’s dying, isn’t she?’
‘We’ve got to get a line into her otherwise we can’t guarantee anything,’ the doctor replied. ‘She is severely dehydrated. If we don’t get fluid into her within the next 15 minutes we could lose her.’
Most other people would have been cracking open another tin of Quality Street in front of the Boxing Night Bond movie. But inside Helena Ward my family was facing up to the reality that I might finally have succeeded in starving myself to death.
Mum clung to the side of the bed as if by holding on tight enough she could keep me there.
Finally a nurse found a usable vein and they hitched up the drip and gradually began to rehydrate me. But I still wasn’t out of the woods and my condition remained severe.
Mum stayed all night with Natalie. She held me next to her, willing me to live. ‘You’ve got to fight, Nikki,’ she kept saying. ‘There is a life out there for you.’
Poor Natalie was so exhausted that in the early hours of the morning she climbed into bed next to me. But even her warmth couldn’t bring me back to my senses.
It was almost 24 hours before I finally woke up, surrounded by doctors. There was my social worker Peter Honig, Dr Lask, Dasha Nicholls the registrar, my key nurse Sam and Dad all standing around my narrow hospital bed.
As I opened my eyes all I could feel was a dryness in my mouth and a grogginess in my head. But then a far stronger feeling hit me – anger. Because to my side was a bag of glucose connected to a drip which they had finally managed to feed into my arm.
‘What’ve you been doing?’ I said. I reached up to the bag, trying to see the calorie count written on it, but I was still so disorientated I couldn’t work out what it said. So instead I reached for the needle that was piercing the back of my hand and yanked it out.
‘Calm down, Nikki,’ said one of the nurses as she set about trying to reconnect it. But this vein had collapsed too, so there was nothing she could do but try to find a new one. I wasn’t having that, though, and went into the most horrific rage at Dr Lask, Dad and the nurses. ‘Did you knock me out so you could fill me with this shit?’ I shouted, feeling utterly betrayed.
Dr Lask must have been called in from a day off because he was still wearing a hand-knitted jumper that he must have been given for Christmas. He kept trying to calm me down and talk to me as I thrashed around the bed, clawing at any nurses who dared approach me with a needle.
After a while, exhausted, I slipped back to sleep. But I drifted in and out of consciousness, picked up snatches of the conversation going on around my bed between Dr Lask, Peter Honig, Dasha Nicholls, Mum and Dad. I wasn’t even sure who was saying what – it was just words and voices rolling around in my head. They were saying things like: ‘It’s a huge risk’ … ‘But we haven’t got a choice’ … ‘Stitch it in?’ … ‘Gastrostomy’ … ‘General anaesthetic’ … ‘Tube’.
The words bounced around my head like bumper cars at a fair. But there was one they kept coming back to: ‘gastrostomy’. In my fuddled state I was trying to work out what it could mean. But they can’t do anything to me now, I thought. I’m dying now. I’m winning, so what can they do to stop me?
It was a couple of days later, when I’d come back to my senses, that Mum explained to me the true, horrific meaning of gastrostomy. ‘They’re going to give you an operation to stitch a tube directly into your stomach,’ she said quietly. ‘Because you keep pulling the nasal tube out, there’s no other option left. You won’t be able to pull this stomach tube out. They have to do it to keep you alive.’
What Mum didn’t tell me was that Dr Lask had described me as the worst case of anorexia he’d had to treat in 32 years and that my chances of long-term survival were slim. I was also to be the first anorexic patient ever at Great Ormond Street to have a gastrostomy – and the danger of my undergoing anaesthetic and surgery at my critically low weight were extremely high. They were only doing the operation because they thought the alternative was certain death.
I felt sick as Mum talked on and on about the op and how it was all for the best. I was scared by the prospect of surgery but terrified to think there would be nothing I could do to stop them feeding me once the tube was fitted. Then they would have won the battle for control over my body once and for all.
By the next morning, when Dad arrived on the ward a couple of hours before I was due to go down for surgery, I was hysterical.
‘Please, Dad, please don’t let them do it’, I begged. ‘Please, I’m going to be good from now on. I’ll eat, I promise.’
Dad looked so confused. He desperately wanted to believe me and he didn’t want me to have this hugely risky operation either.
‘Go and get me a Complan build-up drink from the kitchen now and I’ll drink it. You’ll see, I’m serious,’ I said.
Dad walked out of my room and returned five minutes later with a large glass of chocolate Complan – a nutritious high-calorie drink.
He handed it to me saying, ‘OK, if you drink this maybe I can persuade them not to do the op. But you’ve got to drink it.’
It tasted delicious. It was so long since I’d drunk anything like that and I loved it. And I didn’t even feel overwhelmed with guilt like I would have done normally – because I knew it was my last chance to avoid the operation.
I swallowed the lot and kept it down. I had to.
‘So they won’t do it now, will they, Dad?’ I asked.
I’d barely finished speaking when Dr Lask walked into the room, saw the empty glass and went berserk.
‘What on earth is going on here?’ he demanded, staring at Dad. ‘Nikki is supposed to be on nil by mouth in preparation for her general anaesthetic. Are you trying to sabotage this operation, Mr Grahame?’
Dad flared up in retaliation. ‘She is going to eat again,’ he said, pointing in my direction. ‘She has promised me, haven’t you, Nikki?’
Dr Lask didn’t even look at me to see my response. ‘Nikki has had the last two weeks to show she could eat without a tube but she hasn’t taken that opportunity,’ he said. ‘Why should we give her the benefit of the doubt now?’ Then he spun round and left the room.
I don’t think Dad realised I was on ‘nil by mouth’ and I’m pretty sure he didn’t give me the drink to stop the operation going ahead. I reckon he was just hoping I had turned a corner and might start eating again. He was as desperate as I was that I shouldn’t have a bloody great tube stuck into my stomach.
But the operation went ahead anyway. They must have stuffed me full of sedatives again because I don’t remember much more until opening my eyes and seeing the stars on the ceiling of the lift. That meant I was going downstairs for surgery. Dad was on one side of the bed and Mary, one of my nurses, was on the other.
As I stared hazily up at the stars sparkling above my head I thought, This must be what it feels like to be in heaven. Comfy, warm, safe. Kind of nice.
I looked across at Dad. ‘It’s all right, Nikki,’ he said, squeezing my hand. ‘Go back to sleep.’
CHAPTER 12
ZOMBIE CHILD
The stars were still twinkling in the dimmed light of the
lift when they brought me back up to the ward from the operating theatre.
I felt groggy and my head seemed to be weighing a ton. But the strongest feeling was an incredible pain in my stomach.
Back on the ward, I lifted up the sheet and looked down at my tummy. There was a bandaged area on the left of the lower part and sticking out of it was three inches of clear plastic tubing. This was clamped to another tube stretching under the sheet and up to a feed bag suspended beside my bed. I felt disgusted as I watched the milk feed slowly seep into my body, but even I didn’t have the energy to fight it at that moment.
My weight had been so critically low that the doctors had started tube-feeding me as soon as the operation was complete. They had just hours to get calories back into my body before it went into total shutdown.
I was pumped full of so many sedatives that I don’t remember anything more about the next few days, until I was wheeled out of my bed just before midnight to sit with the other kids in the television room.
It was the countdown to New Year 1996.
‘Ten, nine, eight…’ everyone was shouting. I just sat there in silence, my face blank. I was so doped up and weak that I was like a scrawny shop dummy, propped up in a wheelchair watching expressionlessly as the rest of the world celebrated being alive.
They’d barely finished the countdown when my eyes closed again and they wheeled me back to bed.
After that I was sedated for more than another week. So in total I was in a zombie-like state for a fortnight, unable to speak or hear, and with a catheter fitted to drain away my urine and faeces.
I was again on Diazepam, Chloropromazine, Thioridazine and Amitriptyline, plus Carbamazepine, a mood stabiliser. The drugs were syringed into my feed tube three times a day, but if I started to come round they quickly topped them up.
I was totally at their mercy. For the time being, they had won.
Mum visited me every day during that fortnight and Dad came a lot too, although I had no idea at the time that either of them were there. Mum would brush my hair or sit and look at me or read the papers. Dad would wander up and down, talking to kids who didn’t have visitors.
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