Mealtimes and Milestones

by Barter, Constance

  Mum and I went out to the local town when I had my visit. We went shopping and I picked up a top, but I couldn’t fit into it. I found this hard, because I wasn’t quite sure what to do with the fact that I couldn’t get into it.

  ‘They did this to you.’

  It brought home to me that I have put on weight, and I find this hard to absorb.

  Monday 27 August

  My uncle and aunt came today. It was great to see them and gave me a real confidence boost. We went bowling in the afternoon and had great fun. I didn’t win, but I was surprised that I didn’t take that out on myself, because I would usually take that as meaning I am a failure, even if it was just for fun, but I didn’t, and it felt so liberating not to be pressured by my negative thoughts.

  Tuesday 28 August

  We went back to Willen Lake today. We went on an orienteering course of 4 km. As soon as we were told this I thought about exercise, and it is still something very much at the forefront of my mind, because it is something that I have struggled with in the past. I was worried whether it would affect my weight.

  We walked for about an hour and a half, and at the end I was so completely exhausted. My legs ached and I hardly knew how to move. I found this hard to deal with because it made me think about how much anorexia has taken away from me. I might have been exercising excessively before, but it meant at least that I had reached a certain level of fitness, and now not to have any of that made me really sad. I used to run 10 km, but now I couldn’t even walk 4 km.

  In the evening one of the other young people had a tube passed, and all my feelings just came rushing back. I feel sorry for her, but also jealous. I want to be the most ill. Even though having a tube passed is a horrific experience, I am proud of it. I am obeying my voice, and some day it will reward me for that – it told me so.

  Wednesday 29 August

  In therapy we got talking about what achieving and what being the best actually means. In my life I have always striven to be the best, and where has it actually got me? I have turned my determination into something negative. I have used it to try and become the best anorexic. We wondered why I needed to drive myself to achieve so much. I guess it’s because it is a way in which people can commend me, which I feel I need so that I can gain a confidence boost, because I can’t find that self-belief. I need other people to appreciate me and my achievements because at the moment I am unable to appreciate myself and value myself for who I am.

  Thursday 30 August

  The issue about my tube, and when it would be coming out, has been around quite a lot. I had to go for a meeting with my case manager after tea. She said that I should have a think about it before I went in.

  When she asked me what I’d been thinking, I said, ‘I think the whole “three day” thing is good, because once you manage to do this, it proves that you are ready to have it out, but for me, it just seems that it could go on for ever because as soon as I get to the third day I panic and stop eating. Maybe something like a set date would be more helpful, say Monday or Tuesday.’

  ‘Well, how about tomorrow?’

  There was then one of those very long, awkward silences.

  I’m not ready to have it out. I don’t want it to come out. It has become a part of me within less than three weeks. How could I say that, though? That I want another weekend of people outside looking at me, curious about what is wrong with me? I desperately want to disappear and become invisible – but I also want people to notice me, as I haven’t got anything they can remember me by, only my tube. I tried a bit to explain this, but actually I don’t want to because I am afraid that they might take it out even sooner. We came to the agreement, though, that it would come out on Monday morning, whether I was eating or not eating.

  Saturday 1 September

  I rearranged my morning snacks so that it would allow time for me to go with Mum and Dad to Covent Garden in London and meet up with some friends there. It was really great, the healthy side of me realized that this was normal, and wanted to have a normal life, but I also wanted to have a tube in for the rest of my life. I can never escape this confusion.

  On the way back a man offered me his seat on the Underground, I expect probably because of my tube. I didn’t really think much about it at the time, except that he was a very generous man. However, in the car afterwards Dad said that it had brought a tear to his eye. I was quite shocked by this because although I was very, very grateful to the man who gave up his seat, I don’t realize or understand how much my dad cares for me, and thinks about me. It doesn’t make sense. I’m a person who has obviously caused him so much despondency, sorrow and frustration. Why should he care for me? I just don’t get it. I am trying to think of reasons but I can’t. All I hear is:

  ‘You are a failure, everyone hates you. Your dad is just pretending to like you. He is deceiving you.’

  I am sure that this isn’t true, but I can’t think of any reasons why it isn’t true, so I just have to believe the voice.

  Sunday 2 September

  I am really anxious about my tube coming out tomorrow, and I talked to my key worker about it. I am worried that I won’t be able to cope, and that it will have to go back in. I also wanted to know whether it was going to be taken out before or after breakfast. I want it to be taken out after breakfast, because I think that I am going to find it really hard, so it will make it even harder to then be expected to eat a bowl of cereal. She agreed, and said that my request would be passed on.

  I guess I’m so worried because I know that, as the voice keeps telling me,

  ‘It IS going back in.’

  I’m not ready. I’m not going to eat. I want to keep my tube. It’s how I identify myself as a person.

  Monday 3 September

  I sat down at the breakfast table, but then one of the nurses came to get me. I assumed that she was just going to confirm that my tube was coming out after breakfast, but she just said that it was coming out now. It ran through my mind to say something, but I was too scared.

  Pulling it out was a lot quicker than putting it in, but no less uncomfortable. She said, ‘Well, at least you have got your nostril back!’

  I got up and smiled, but underneath I was crying a river, it was like a rainstorm was brewing up inside me, I could feel it all coming together.

  I sat back down and my riverbank broke. I wasn’t sure what to do with everything.

  I feel that it was quite insensitive to take it out, because one of the reasons that I have become ill is because when I’m upset or angry, I take it out on food. I am also confused why my request hadn’t been handed over, because as I predicted I found it hard. The voice just took over:

  ‘You’re a failure because you don’t look thin. You’re not ill enough – just being in an in-patient hospital isn’t enough. Having the tube gives you a status symbol, it tells people that you’re not managing and that you are an anorexic – now, THAT is something to be proud of and hold on to. Keep going, my friend.’

  I do have another voice saying that I don’t want to be ill, but it is nothing like as powerful, and I have given up trying to fight the negative one. Every day is such pure labour; it is like a thousand wars going on in my head each day.

  I didn’t manage any breakfast.

  I am finding it so hard being off the tube. I am managing food, but I can’t let myself drink. I feel like a swinging pendulum. The more I swing to the recovering side, the more the force pulls me back to the anorexic side. Therefore if I remain in the middle, I stay totally neutral and satisfy both voices. To me eating but not drinking seems like the perfect solution, I will be like a peacekeeper between the two sides.

  Tuesday 4 September

  It was the first day of school today at the hospital.19 I went through with my key teacher20 how my timetable would be set out, and where I would do my extra subjects for GSCE (Geography, French, German and Latin). I was pleased because I’ve been really frightened that they might make me drop a subject.

  I
n the third session of the day we were set some temporary maths to do, just until some work was sent through from my school. I suddenly felt really pressured again. I want to stay on top of my work because that is what I judge myself by, but I also know that my health comes first, whether it’s positive or negative. The right balance seems blurred in my mind.

  That evening during tea a nurse came in. I still hadn’t drunk any fluids, and it had been two days now. I knew what she was going to do, and I really didn’t want it to happen. She supported my head again because I was crying and kept moving it away. The tube came closer and closer to me, and was slowly pushed in.

  It is corrupting me. It is my enemy but also my lifeline. It is unpleasant and sore, but offers my body fundamental nutrients to stay alive. It is a snake squeezing all the hope out of me and restricting me, forcing me down a disconsolate path from which I can’t escape. I blame myself for everything.

  Thursday 6 September

  In my core team meeting I asked for consent to see either a friend or my grandparents this weekend. Although it would be less awkward seeing my grandparents with my tube, I think it will be more motivating to see a friend from school because it is them I am really missing. It was agreed, and because it was such a positive meeting I even managed half a glass of water at snacks.

  I had family therapy in the evening. We discussed why I find it hard to talk to my parents about things. We wondered if it is because we are quite a jovial family, which therefore makes it hard for me to say if I’m feeling low for fear that I will bring down everyone else’s moods too, and if I do that then I feel guilt-ridden and totally accountable for the unhappy mood. It was helpful for me to see that I can be sad, and that my parents will be able to cope with that – they are mature adults. Although I don’t think that I’ll be able to put this into practice.

  Friday 7 September

  I spoke to my parents, but it was too late to arrange for a friend to come this weekend. I found this quite hard, because I had really built up my hopes, and I really believe that this is the motivation that I need to come off the tube permanently.

  In the evening with my feed, everything just developed into a collection of uncontrollable emotions, and I couldn’t deal with it. I tried to stand up and tug the tube out of the nurse’s hand, but I couldn’t and she kept on tubing my feed in. I pleaded with her through my tears to stop, but she didn’t.

  ‘Please, please stop . . . what if I don’t want to live?’ I screamed at her. She didn’t respond.

  I was put on observation again. I went out of the feeding room and tried to lock myself in the bathroom, but the nurse caught me too quickly. I was howling with frustration, completely distraught, and was trying to retaliate against her. I wanted her to leave me alone. I want to evaporate and be forgotten about. I was begging her to leave me alone. Another member of staff then came in and calmed me down. I don’t really know why I went like that. I guess I am so frustrated with myself. I hate myself, and I hate this illness. It has captured me in its grasp, and it is never going to let me go. I’m better off dead.

  Saturday 8 September

  My parents visited me today and everything was going really well until lunch. The agreement was that as long as I was up to date with food by lunch, whether orally or by tube, I could go out with my parents in the afternoon. After lunch I was down for a glass of Ribena and a glass of water. The nurse measured out 500 ml of water, we were about to go in for the feed, when another member of staff collared me and said that I had to be up to date with calories before I could go out, and therefore refused to let me be tubed the Ribena. So she made me go back for twenty-five minutes and sit until I drank the Ribena.

  One side of me just wanted to drink it because I desperately wanted to go out with my parents, but the other wasn’t sure whether four hours out was worth drinking it for, because it makes everything inside me so much worse. By choosing to drink I am taking sides, and disrupting my ‘being neutral’ plan.

  I finally drank my Ribena, and then had the water tubed. My parents by now had now been waiting for well over half an hour. When I came out to join them a torrent of tears streamed down my face and on to my dad and I was crying, ‘It’s not fair, it’s just not fair!’

  One thing that we had been working on in family therapy was that they should give me space to be able to say that I wasn’t OK, and that I wasn’t in the mood to be happy all the time. So in the car I explained why I was crying. It was a real breakthrough for me, and in the end we had a great time out, and it really helped me to see that persistence does pay off.

  Sunday 9 September

  I spoke on the phone today to one of my greatest friends, who moved away in July. We just talked and gossiped about anything and everything! It really cheered me up. It was so incredible to talk, and it is one of those phone calls that I will never forget.

  Monday 10 September

  In my key session we did something quite different. We went upstairs and used the drum kit to see if I could try and express myself that way. My key worker gave me different feelings or situations and I had to transfer these on to the drums. Examples included guilt, hope, the two voices in my head and depression. Things like guilt were large, strident sounds. Hope was very quiet, almost a non-existent tinkle. For depression there wasn’t a noise. It was just a blank silence. It makes me feel empty inside. It hasn’t got a beat or a melody. It’s a continuous desolate space inside me.

  It was really interesting and helpful, because it made me see which emotions are stronger and it was a different form of expression from trying to explain in words.

  Tuesday 11 September

  In family therapy we talked about the death of my grandfather. For me, there has always been a great mystery behind it. I came to my own conclusion recently – that he died in our guest bedroom – but my mum always denied it.

  He was staying with us because I wanted to show him my new junior school, so he had come down for a couple of nights. In the morning I was a bit surprised that he wasn’t at breakfast and wondered why my other grandparents took me to school, but I didn’t question it – I was only seven or eight at the time. In the afternoon when my parents picked me up from school they told me that Granddad had died that day on the way to the hospital in an ambulance.

  In family therapy today I was told the truth – that he did actually die in his sleep in our guest room. Mum had found him dead in the morning, and she wanted to protect me, and didn’t want me to see his body. Although it was hard to hear this, I am pleased that I finally know the truth and the reason for the redecoration of that room and the new bed. I totally understand why they did it, yet they still lied to me – and perhaps I am more resilient than they think? But why can’t I be more resilient to anorexia?

  Wednesday 12 September

  The issue around NG feeds was around quite a lot because there are now four people on NG tubes. Feeds can be quite distressing for some people and so it has to be done in the quiet room for safety. Even so, Enlive tends to get splattered around the walls and other members of the young people’s group are quite annoyed about it, because the quiet room is supposed to be a place where you can go and just be calm, but when someone’s in there being tubed it’s not tranquil, and even if you go in there afterwards you can’t be tranquil because you get a real sense of someone’s pain, struggle and distress, which isn’t at all comforting.

  In Community Meeting21 we talked about why four people were on the tube. I feel quite cross, though, because I was the only one of the four who spoke, and I’m not even one of the people who struggles or retaliates. Someone asked me why I felt I needed to be on a tube, and I replied, ‘Because it is a way of punishing myself. I don’t deserve to drink and nourish myself because I hate myself so much, everything about me.’ I then started to cry.

  I was upset for three reasons:

  1.

  I felt guilty about being honest because I don’t really want people to know what I had just said. I feel very exposed an
d vulnerable. I don’t want people to understand my thoughts because I don’t want to accept their help.

  2.

  I was upset for feeling so bad about myself and don’t understand why I just can’t like myself. I’m too scared to envisage and dream about a future where I’m not ill, because I know that I’m never going to get to that paradise. I just have to accept that there is no hope.

  3.

  I am also fed up with this stupid illness. They try and encourage you to talk about your feelings, but now I have done that, I actually feel worse. I want anorexia to leave me alone, but then again I don’t want it to abandon me. I’m so confused about what I want.

  This evening, though, I found out that my friend is coming to see me at the weekend, which has made me so excited! However, this excitement is clouded by anorexia. I hate anorexia. It isn’t an attention-seeking act. It isn’t a faddy diet. It is a desperate cry for help. People outside don’t understand. If I didn’t have to go through this I wouldn’t. I just want it to go away. I want the voice to stop talking – but it won’t. It won’t leave me alone.

  Friday 14 September

  In the third part of Friday Group, one of the therapists said how courageous I was in sharing how I felt in Community Meeting, and how heartbreaking it was that I feel the need to punish myself. I didn’t think about it much at the time, but during snacks I began to cry. I was still upset and frustrated with the illness. I want to move on but don’t know how to. I guess I am also a tiny bit proud that someone has acknowledged how challenging, and what an important step, it was for me to expose my genuine feelings – and maybe because I feel proud, I don’t know how to cope with that feeling, because I haven’t felt that in such a long time. It was the most minuscule amount, but even so the non-deserving-guilt feeling seemed to come rushing back to me.

  Saturday 15 September

  In the afternoon with my parents we went to a nearby city. The first place we visited was the cathedral. It was really beautiful, and it felt quite important for me to be there because I missed church last week, and I’m going to miss it tomorrow too. There was a board in the cathedral where people could write up their own prayers, and Mum wrote a prayer for all the staff in the unit, saying, ‘May they protect and surround all the children with love and support.’