Montse’s diary
d‌ life, love an
Written by Adele Minchin with special thanks to Montse and Alberto for sharing their beautiful story Illustrated by Ellen Lindner Produced by Bold Creative. Thanks for all the energy put into making this book a reality. Copyright Body & Soul 2010 Print managed by Cyan Group www.cyan-group.com
Montse’s diary
d‌ life, love an
15th January When I was little, my mum used to tell me and my sisters a story about a girl who lived alone in a hut in the middle of the dark woods. I remember it being really scary, magical and mysterious. There was no lesson at the end that said if you do this or you do that, you’ll end up like that girl, or if there was I never used to listen to that bit. For me it was just one of those crazy children’s stories that had me entranced every single time. Mum used to pinch our cheeks after finishing the story and tell us we were intelligent, wise and beautiful girls who would all find love and live happy lives. None of my sisters can remember it but for some reason it’s always stuck in my mind. I can’t stop thinking of that story today. I went to Tracks last night and met an amazing guy. It sounds really corny, like a scene from some awful old school movie, but our eyes literally met across the dance floor and honestly something just happened. I don’t really believe in love at first sight but I swear I’ve never felt like that before. We looked into each other’s eyes and the next thing I knew we were talking and he was asking me to dance. His name’s Alberto and he is so cool. I mean so, so cool. He’s so not really my type, but when you meet someone and there’s some sort of connection that you can’t even explain, all of that superficial stuff like looks, clothes, hair, all just fades into insignificance. He’s got this cheeky, kind of mischievous look about him and he made me laugh straight away. I got kind of swept up in the moment last night. I was on a bit of a high and stayed out way later than I’d intended. I haven’t done that in ages. But I’ve come crashing back to earth today. I should be really excited, working out how I can get to see him again, telling all my mates I met a really hot guy last night. But I just know it’s not going to go anywhere. If by some miracle we did start seeing each other I’d have to tell him about me, and
then that would be it. Over. The same way Jamie didn’t want to be with me in the end. I mean, he pretended that he wasn’t scared and that he wanted to be with me to love and support me but I knew deep down that it wasn’t really what he wanted. I saw the relief on his face when we finally broke up. I’ve been so on my guard since me and Jamie split up. I haven’t really been open to meeting anyone new or letting anyone new into my life. Then suddenly last night I felt my guard drop slightly. I didn’t go out looking for anyone that’s for sure. It’s funny how things happen when you’re least expecting them. I haven’t stopped thinking about Alberto all day. I keep reliving the moment our eyes met over and over again in my head. But it’s all just a waste of time and energy. I’m living in a dream world if I think this guy is going to want to have anything to do with me. It’s so unfair. I feel so alone. No one understands what I’m going through. I can’t talk to anyone about it. I’m just left all alone with these overpowering thoughts and feelings driving me insane. I wish I’d never met him because all he’s ended up being is a reminder of what I can’t have, of what I’ll never have. I might as well build myself that hut in the middle of the dark woods like the girl in my mum’s story right now, because that’s where I’m headed. He’s too young for me anyway, even if he was interested. He’s 19. Two years younger than me. He seems too irresponsible, too crazy. He’s just a lad out with his mates, partying and picking up girls. He’s not stable or mature enough. He wouldn’t be able to handle me and everything that comes with being me. I wish there was a switch you could flick to turn your brain off. I need to sleep but my mind is just racing. Yet another night lying in bed staring at the ceiling…
Z Z
Z
Z Z
Z Z
22nd January
Alberto was there again last night. I walked into Tracks and he was there propping up the bar with a big grin on his face. I’ve spent all week blotting him out of my mind, not allowing myself to focus on him because it just feels too sad, too painful knowing there isn’t a future in it. There’s no point creating any false hope. I wasn’t even going to go out. My sister basically dragged me there. I told her some of what I was feeling about relationships and about Alberto. I didn’t tell her everything. She’d probably think I was totally bonkers if she knew everything going on inside my head. But anyway, she said that there is someone out there who will want to be with me and that Alberto might just be that person, so I shouldn’t write him off before giving him a chance. I didn’t think I’d see him again to give him a chance to prove himself, but he was at Tracks and he came straight over the moment he saw me. I was pretty cool and calm. I surprised myself. I’d usually be really nervous around someone I really like but I guess recently I’ve kind of been burying my emotions; it’s just too scary to think what would happen if I allowed everything I was feeling to spill over in public. I’d probably explode like a hand grenade - love, hate, grief, anger and tears splattered all over the place. I think I’ve built some sort of protective wall around me to prevent myself from getting hurt, and that’s why I was so calm and collected. I had my crash barriers firmly in place. My guard was up. There
was no way he was getting through to hurt me. But it was so easy speaking to him and he’s got such a carefree manner that I actually found myself relaxing really quickly. After an hour or so I realised I’d just got wrapped up in the moment, laughing and talking and dancing, and time had just flown. God it felt good not to worry just for a short while. Alberto made me forget. Anyone who can do that is amazing in my eyes. We left Tracks, just the two of us, and when we got outside Alberto handed me a crash helmet. Before I knew it I was sat on the back of his motorbike speeding down the road towards the next bar. Me! On a motorbike! I hate motorbikes, but I felt so free and alive. It was such a fantastic feeling. I didn’t ever want him to stop. I had my arms wrapped around him in his big black leather jacket and I swear if he’d said that we were going to drive to the edge of the world together I’d have just nodded my head and told him to put his foot down. The bar we went to was too crowded and noisy so thankfully he suggested we just get back on the bike and go to the viewpoint at the top of the hill, overlooking town. It was such a beautiful night. It was freezing but the sky was cloud free and the stars were brighter than ever. We talked for a while about work, college, friends and stuff like that, and then he said that he wanted to know everything about me. I totally froze. He so doesn’t want to know everything about me. I just came crashing back to reality after that. You’ve got to trust someone to let them into your life and into your heart. I do actually think I could trust him, but I’ve been burnt really badly by people who I genuinely thought I could trust. So I kind of wriggled my way out of giving anything away and then he dropped me home.
I wonder what he’s doing now. I wonder if he’s thinking about me. I can’t stop thinking about him. I keep picturing his smile and his big, gentle brown eyes. I wish I was on the back of his motorbike again, free as a bird, on a road trip with no particular destination. Just me and him together, no cares in the world. I wish. I wish. I wish…..
19th February I’m going to tell Alberto that I’m HIV positive today. We’ve been seeing each other for about a month now and I really, really like him a lot. It’s very intense between us and I can’t put off telling him any longer. I need to be honest with him otherwise the relationship is never going to work. And I need to know sooner rather than later if he wants to be with me once he knows my status. I’ve felt right from the beginning that he was someone I could tell but I’ve had to get to know him more to be really sure. I feel strangely calm about telling him. I thought I’d be terrified. Terrified of his reaction. Terrified of hurting him. Terrified of rejection. But I just feel calm inside. There have been times when I’ve been with him and almost told him, just blurted it out, but I’ve stopped myself at the last moment. I’m ready now though. I’m ready to do it and I’m ready to deal with whatever happens. I never want to hurt, humiliate or betray Alberto in the same way Jamie betrayed me. That is unforgivable. I will never ever do that to anyone. I just want to be honest with Alberto and let him make his own mind up. It’s a choice I never had.
20th February I’ve just got back from Alberto’s. I told him on the phone yesterday. There was a long pause while he took the information in, and then he told me to get on the next bus to go and see him. He met me at the bus station and we kissed and hugged. We didn’t talk for a while, just held each other and that said it all really. I feel so lucky to have met him. He is such a special, special person. I can’t believe he still wants to be with me. He even said he wanted to marry me. As far as he’s concerned it’s just like any other illness like cancer or whatever and it doesn’t make any difference to the way he feels about me. Being with Jamie made me realise that it isn’t just like any other illness because the HIV negative person is scared of being infected, scared of not being able to have children and scared of all the secrets and lies. I explained all of that to Alberto but he said he loved me and wanted to be with me and could get on with life. Who knows what is around the corner. Who knows how long I’ve got to live this life… so I’d better enjoy it now while I’m young and healthy and with a man who loves me.
13th May
I haven’t written anything for ages. Reading back over what I wrote and how I was feeling in January when I thought I would never meet someone who would love and accept me, I feel so incredibly lucky to have found Alberto. That first night when we saw each other and our eyes met was absolutely meant to be. It was true fate. We belong together and I think we both knew that right from that very first moment. Alberto moved in with me three weeks ago. He came to stay for a weekend and basically never left! It’s pretty cramped with my brother living here as well, but we just keep ourselves to ourselves as much as we can. David isn’t too happy about the motorbike paraphernalia filling up the hallway of the flat, or Alberto’s midnight snack attacks when he feeds like a polar bear just out of hibernation, demolishing the contents of the fridge and leaving nothing for breakfast. But with seven brothers and sisters, me and David are used to sharing and living in close quarters with loads of other people, so he hasn’t got too fed up yet! Me and Alberto are going to get our own place as soon as we possibly can though. For the moment our bedroom is our little love nest, our sanctuary, and we don’t need much else. It’s all moved pretty fast….but you have to follow your heart when it feels right.
14th May
I have just had the biggest argument with my sister about Alberto moving in. Her and my mum and practically everyone I know have said that I’ve acted rashly, that I haven’t thought it through, that I barely know this guy and need to get to know him better before getting so serious with him. I’ve been lectured on how if I’m living with him it will be more difficult to untangle myself from him if things go wrong. I’ve had warnings that he could rip me off, or take advantage of me. If one more person tells me that he might as well be a total stranger for the amount of time I’ve known him I will scream. Why don’t they all just back off? They’re driving me crazy. They haven’t got a clue how I feel or how Alberto and I feel about each other. They don’t know him like I know him. He is the kindest, most gentle and loving man I have ever met. We’re in love. We don’t want to follow any rules or regulations about when we should or shouldn’t live together. Alberto is fast asleep on the bed next to me as I write. He’s so funny when he sleeps. He lies on his back star shaped, mouth open, snoring like a hippopotamus. I feel so lucky to have him here by my side. I’m really happy for the first time in years. I can’t believe I can actually write that and really mean it. I’m happy. Wow, that feels good. I’M HAPPY.
28th May
Alberto is so inconsiderate sometimes. He knows that I get tired easily and that I haven’t got the same amount as energy as him, but he’s still up for partying all the time. David has gone skiing for a fortnight and we’ve got the flat to ourselves. Alberto is acting like he’s sixteen; we’ve had friends round every night this week! Its been great, but I’m exhausted now. I asked him if we could have a quiet night on our own tonight and go to bed early for a change, but he’s out there playing boxing on the Wii with a load of beers and he’s making so much noise. I tried to explain that I needed some rest, but he just got impatient with me. He doesn’t understand. He can’t understand. Nobody can really, that’s the problem. He’ll wake me up when he comes in the bedroom and then I won’t be able to get back to sleep because of his snoring. How can a human being make so much noise in their sleep? I can’t believe he doesn’t wake himself up. The whole room shakes with every snore, like a train has just passed through the flat. If I try and move him or wake him up to get him to roll over himself he gets really grumpy and upset with me. We had a massive row the other day. I tried to keep calm and explain to him that of course I want to have fun and see friends and do stuff, but now and again I just need some quiet time and some time with him on my own. Anyone would want that, not just me, and not just because of my situation. We were sat on the sofa watching some rubbish drama on TV, eating pizza on our laps and suddenly he just leapt up and said that he was bored. He looked kind of disappointed, like he was expecting things to be more exciting than this. He actually said, ‘Is this it?’ That’s when I lost it. I mean, I’m sorry if
I’m not enough for you Alberto. I’m sorry if I can’t be Miss Party Animal Extraordinaire twenty four hours a day, seven days a week in order to keep you entertained. What does he expect from me? What does he expect from a relationship? This is real life, and real life isn’t parties and excitement and living life at a hundred miles an hour all the time. We’ve had the most amazing few months together. It’s all been a bit of a whirlwind, what with us meeting and then me telling him, and then us living in each other’s pockets totally loved up. It’s all been really exciting and emotional and, well, extraordinary I guess. It was bound to get ordinary sooner or later. That’s just the way life is. What if he doesn’t really want ordinary? What if he can’t cope with me needing time to recharge my batteries? What if he’s just someone who can only live life with the dial on high speed? I feel really old and boring all of a sudden. Maybe he’s right. Maybe I am a disappointment. I’m not the person he expected. I wish he’d turn that Wii off.
29th May I knew this moment would come. It was inevitable. I feel so sorry for Alberto. He hasn’t had to do this before. At least I’ve had some practice. Keeping secrets, making up stories and hiding things have been part of my life for the past two years. I’m used to it by now but poor Alberto isn’t. And we’ve had such a lovely day together too. It’s such a shame it’s ended like this. The thing about Alberto is that he’s kind and sensitive and would never knowingly do anything to hurt anyone. We’re just both getting used to being in a proper relationship. We spent the afternoon hanging out in the kitchen, listening to music while I cooked. I really should have hidden my medication before his mates turned up. It’s my fault. I usually remember to put them in a Tupperware box right at the back of the fridge but I was so preoccupied with cooking that I totally forgot, so there were packets of pills in there on full view. His mate Gabriel went looking for some cold beers and totally innocently asked what the ‘heavy duty drugs’ were all about. Alberto wasn’t sure what to say and got really flustered and nervous. I came back into the kitchen and Alberto was standing by the fridge waffling on about having to take antibiotics for a chronic ear infection he had and he was staring at me really hard. I realised what was going on straight away. Alberto announced that he could feel a migraine coming on and suggested everyone should leave. He’s gone out for a ride on his bike now. I wanted to talk but he just wanted to get out of the flat. He said the walls were closing in on him. Sometimes Alberto doesn’t want to spend loads of time talking things through. I wanted to talk about what had happened with Gabriel seeing my medication straight away. I wanted to check that Alberto wasn’t too freaked out and talk about how it had made him feel, how it had made me feel. When Alberto said he was going out I told him he was a typical man, not able to talk about
his feelings or communicate properly and I stormed off to run a bath. I was probably a bit harsh. He is an eternal optimist, naturally carefree and he thinks I get too serious sometimes and want to turn every stone over, analyse everything. I just thought it was important that we talk things through so that any issues could be aired and dealt with there and then. I mean it was no big deal really. Some friends just saw my meds and asked a few questions. But would we have told them the truth if they’d pushed us? We don’t know how they would react to the news, or if it was a bad response what sort of pain and heartache it could cause us. Believe me, you can never be sure how people will respond. I was shocked and horrified by some people’s responses when I told them just after being diagnosed. Alberto hasn’t told anyone yet. He hasn’t experienced what it’s like to tell people and think they’re going to react one way, and be totally shocked when they don’t react as you were expecting. We’ve talked about it and decided that we will definitely tell his family one day, when the time is right. I’ve told him that if he needs someone to talk to about it he can tell someone he really truly trusts. It would cause us heartache to know that he was suffering in silence, not able to talk to anyone about it apart from me. It’s lonely having this illness and it’s lonely knowing someone with this illness. Alberto has been amazing about it all though and I shouldn’t snap at him so easily and
storm off like I did. I just get frustrated sometimes when I really want to talk things through in depth and he’s not all that interested because he’s just got a simpler, more black and white view on things. But let’s face it, I wouldn’t be here now, living in the same flat as him and cooking dinner for his friends if he hadn’t been anything but amazing about my status.
1st June
Alberto and I are learning something new about how relationships work every day. I think the biggest thing we’ve both learnt is that it’s bloody hard work if you really believe in the relationship you’re in and want it to be successful. You’ve actually got to work at it, not get lazy and sit back and just think it’s all going to evolve naturally into a beautiful thing because it won’t. I’ve realised that a relationship is like a garden that you have to water, feed and nurture. It wasn’t the perfect situation last night with Alberto leaving the flat to go out on his motorbike to get some air and me stomping off to have a bath. What we should have been doing was talking and making sure we were both okay, after all, let’s be honest, something quite stressful had just happened which could have had some serious consequences. I woke up this morning feeling worried that Alberto was always going to find it difficult to express his feelings and to discuss things with me when they needed to be discussed. I worry I’m too intense for him, too needy about talking things through in fine detail just so I can feel constantly reassured and understood and supported. I wonder if we are always going to clash like this and if it’s always going to be a problem between us. I just withdrew into myself, went really quiet and uncommunicative and put up the barriers, those old familiar protective barriers. They just made things worse. Poor Alberto tried talking to me when he realised something was wrong but I’d gone too far in on myself by that point. It took all day, a long, silent walk in the park, an awkward lunch in a favourite restaurant that we can hardly ever afford to go to, and finally a drink in the bar we went to the second time we met, before I dropped my guard and let him in on how I was feeling. If Alberto wasn’t so patient and sensitive I would never have let those barriers down and we’d never have communicated with each other.
19th November
Alberto’s mum and stepfather visited us today. I was a bit fed up with Alberto about it because he just sprung it on me without any notice whatsoever. I thought we were going to go for a ride on his bike and have a look round the market because that’s what we’d discussed yesterday, but he just announced that his mum was coming this morning and expected me to fall in with his plans. I hate it when he does that. Just springs stuff on me without thinking to check my plans or my thoughts first. Anyway, they came and I tried to be on my best behaviour. They’re nice people but I’m not sure they know what to think of me or how to act around me. We told his mum that I was HIV positive a couple of months ago. Alberto thought she’d be pretty cool about it because she’s worked in hospitals most of her life and has been exposed to all sorts of people with various medical issues. She wasn’t as cool as Alberto had hoped though, and I wasn’t all that surprised. She wasn’t awful or anything. She just cried a lot and made it clear that she couldn’t understand why her son wanted to be with someone who could infect him with a disease. If I was her I’d probably be the same. I think I might have the same worries if he was my son too. Except I’ll never know how it feels to be a mother. I can’t have children because of my status and it’s something Alberto and I have had to come to terms with, but I guess his mum might not have come to terms with never being a grandmother. I catch her looking at me sometimes, staring really intently at me as if she’s trying to figure me out, or trying to spot signs of my illness. So we spent the day with them today. We went for a walk in the park and planned on going for lunch afterwards, but there was a big row and we all went our separate ways. Alberto was walking ahead of us taking a call from someone on his mobile and so me, his mum and his step dad started discussing where to go for lunch. His mum had one idea and his step dad had another, and before I knew it they were having a full-blown argument, shouting at each other. By
the time Alberto got off the phone, he was stood in the middle of three people walking in three completely separate directions. He caught up with me and we went for lunch on our own in the end. But his mum and step dad came back to the flat later and the arguing continued. Alberto told them they were worse than children with their petty arguments. His mum got really upset and said he had no right telling her how to conduct a relationship when he was in a totally dysfunctional one with a woman who had HIV and who was infecting her son. I can’t believe she brought my status into the argument. It had absolutely nothing to do with anything. It was obviously just there on the surface waiting to bubble over and in a moment of anger she just let rip. Alberto went berserk. I’ve never seen him like it. He punched the fridge so hard I was convinced he must have broken his hand. He was so protective of me and so loyal. I burst into tears and had to leave the room. It wasn’t because she had been so vicious with her words as nobody can really hurt me with their words anymore. It was more seeing Alberto’s reaction that made me really emotional. He didn’t question whether to stand by me and our relationship, he just did it. I don’t think most people would do that. He said that she was wrong to bring HIV into a completely unrelated argument and that if she couldn’t promise never to do that again then she should leave immediately. He came through to the bedroom with a cup of tea for me later and even apologised for his mum’s behaviour. He is the loveliest man on earth. I’m so, so lucky to have him.
I feel a sense of peace has descended on us tonight. It was almost good to get all of that stuff out in the open. If I had any doubts about Alberto’s loyalties or his understanding of what it is to be in a relationship with someone who is HIV positive they were totally banished by his actions today. I doubt his mum will ever talk like that again either. She looked so shocked by Alberto’s reaction and how firm he was. It was stuff that needed to be said, and I think in a funny way it will bring us all closer together. It’s the calm after the storm now and I’m just going to lie here and enjoy it
20th January It’s been such an amazing day. I think I’m in shock. I feel as though someone has just told me I’ve won the lottery, except it’s even better than that. I found out today that it could be possible for me to have a baby. It feels so strange even thinking about it. We’d kind of come to terms with the fact that we wouldn’t have children. Not being a dad, at least as long as he was with me, was something Alberto really had to think about when I first told him about me being HIV positive, but he’d got his head around it. We’ve both been really sad about it at times and then there have been periods when we haven’t talked about it at all for a long time, but I’ve often felt a painful ache inside when I’ve really thought about the reality of never holding a child in my arms that me and Alberto have created together. We’ve talked about adoption a little bit but not in huge detail. I had decided to get some counselling a few months ago at Body & Soul. It was good to go and meet other women and families affected by HIV. I saw pregnant women coming in who I knew were HIV positive so I just started asking some questions, and it was through this experience that I found out that it might be possible to have a baby. Alberto and I had a session all about it with an advisor today. She said that as long as I can actually get pregnant it would be perfectly possible for us to have a healthy baby. Medicine has advanced so much since I was diagnosed that they can do all sorts now to make sure the baby is protected from the virus. Alberto beamed from ear to ear and held on to my hand so tight it hurt. I want to get really excited, but as usual I’m worried about raising my hopes and getting carried away too soon. Alberto has practically gone out and bought a cot and a pram
already. He never thought it would be possible, so this is the best news ever for him. After we came out of the session he gave me a great big hug and said that he would be the proudest man alive to have a child with me. Deep down I’m just as excited as he is at the thought, but I’ve also got all these worries about whether it would be fair to bring a child into the world when I might get ill and leave them behind without a mother. Then there’s the fact that there is still 1% chance of the baby contracting HIV through me, and I wonder if that is just too high a percentage. If it was 0% then we could celebrate and start treatment immediately. I mustn’t be too negative though. My default mode is not to get too excited about anything, to never put myself in a position of vulnerability where I could end up being bitterly hurt and disappointed. I want to protect myself from that at all costs, but sometimes I wish I could just relax and rejoice and see what fate might present me with and just accept it. It dealt me a pretty good hand when it led me to Alberto after all. He is the best thing that’s happened to me and I want more than anything to have a child with him. Writing all of this down I realise that I want it really badly. I think I’ve had to bury my feelings about not having children because it was too hard or too sad to think about. Now that I’ve been given a little bit of hope, I realise that I do actually really, really want a child. Alberto and I have been on the most amazing journey together so far. Yes we have bad times just like any other couple and we have to work really hard at our relationship just like anyone else. But we’re in it together, and that’s the most important thing. Neither of us is perfect. But having a baby with him would just be the most perfect thing in the world. A little Alberto. We’d have to get him a mini biker’s jacket and helmet and a sidecar to ride in alongside us. I can see it now, the three of us speeding ahead into the future together, side by side, the world our oyster.
Body & Soul Established in 1996, Body & Soul is a pioneering UK charity that supports children, young people and families living with or closely affected by HIV. Our vision is a world free of fear and prejudice, where HIV is no longer discriminated against and where everyone has access to treatment, love and care. www.bodyandsoulcharity.org
Bold Creative is an award winning creative agency that harnesses gritty stories and experiences to educate, inspire and unlock the true potential of young people. www.boldcreative.co.uk
OPM OPM is an independent public interest company dedicated to improving social results. We help organisations that want to make a greater social impact and one of our specialisms is conducting innovative and high quality research. www.opm.co.uk
Montse’s diary takes us through her emotional journey, through her heartache and pain. But most of all it is a love story, where determination, trust and hope triumph.
Registered Charity No: 1060062 Company Limited by Guarantee No. 3245543
“I want to live life to the full, I want to be loved for who I am and I want to love back”