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Lavilla (right) with Sarah Miles at Ace of Clubs in Clapham, September 2017. Interviews and photographs by James Hopkirk

One day, Lavilla just stopped talking. For over two years, she didn’t utter a single word, in public or in private. A series of traumatic events triggered a breakdown that saw her repeatedly hospitalised and lose contact with her son and her family. I met Lavilla through Ace of Clubs, the day centre that has been instrumental in her recovery. Here she and Ace’s Sarah Miles tell her remarkable story. Interviews and photographs by James Hopkirk…

Lavilla

 

My childhood was pretty idyllic until my mum and dad split up. Then it got a bit messy. They broke up when I was five, but then they got together again and had my brother. But they split up again when I was seven – and that was it. Me and my brother went into a children’s home for about a month, then he went back to live with my mum in Wandsworth and I went to live with my grandma in Clapham Junction.

I think I probably first experienced problems with my mental health when I was nine or 10. I used to run away from home. I don’t know why I did it, I just ran – away from my mum, away, away. I think that was probably the start, but no-one picked up on it. It wasn’t until much later that it was actually identified.

I lived with my nan until I was about 17. I moved into a hostel for a bit after that and then I went to university in Northampton to study politics. I enjoyed it, but towards the end I felt like the tutors weren’t taking it seriously enough, so I transferred to Greenwich for my third year and started living with my grandad.

I finished university and got my degree, but I couldn’t find work. At first I tried to get a posh job – civil service, that sort of thing – but I didn’t get very far. So then I tried to get a not so posh job, just working in Tesco or Lidl, and they said no, you’re overqualified. The funny thing is, I’d had jobs like that before I went to university, so I had the right experience. It was frustrating and it started to get me down.

At the same time, living with my granddad was becoming really difficult. I didn’t know it at the time but he was suffering from mental health problems. Eventually he threw me and my cousin out.

I didn’t have a job and I couldn’t find anywhere to live in South London, so I ended up in a hostel in East London. That’s where I met my son’s father, he was living there as well. I was there for about a year – and then my son came along.

It was a hard time. I felt very isolated. My ex wasn’t a stable or supportive partner. I was 25, in East London with a tiny baby, and all my family were south. My dad would come to visit when he could, but me and my mum weren’t talking at that point.

That’s when I started to have problems with my mental health. I was in and out of hospital. They said I had schizophrenia, but I think it was mainly depression. It was a sad time. It should have been a happy time.

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Lavilla, doing the crossword with Will at Ace of Clubs

My son’s father was still around at that point, but he was all over the place. He wasn’t well mentally either. And then he started hitting me, and my son. At first I was all teary, but then I just lost my temper. I thought, ‘I’m not going to put up with this – I can’t’. So I screamed at him and told him he was out of order, and I left him.

I had nowhere to go, so I went to a police station. It was late. They couldn’t find a bed for us, so we just slept there, in the waiting room, my son in my arms. He must have been about two.

I knew I couldn’t stay east, so the next day we travelled back to Lambeth, to the council, and told them what had happened. They were good. They found us a hostel, so we stayed in this place in Streatham for a while. But I wasn’t well at all, and I got worse. In the end, I had a bit of a breakdown and I lost the hostel.

I was helped by an organisation called the Single Homeless Project. They found me a room in West Norwood. My son couldn’t stay with me there, so he went to live with my mum for a bit. It was a good place, just for single women, but it’s been shut down now. Cuts, I think. Eventually they found me a flat in Brixton, and I’m still there. My son moved back in with me – but I still wasn’t well, and one night I had a funny turn.

I tried to get hold of my mum, but I couldn’t. I phoned my ex and he was just abusive. I should have phoned my dad, but I wasn’t thinking straight. So I took my son to a police station again. I couldn’t get the words out, so I wrote on a piece of paper that he was fine, that I hadn’t hurt him, but asking if they could give him something to drink, and look after him, because I couldn’t any more. Social services got involved, and that’s why he’s still living with my mum now. After that I stopped talking altogether.

I think it was because suddenly I had the time to not talk, if that makes sense. I was by myself. I didn’t have my son. My relationships were so bad with people, I was in such a bad place, I think I felt like I didn’t have anything left to lose. I did, of course, but it just seemed like I didn’t, like everything was pointless. That’s what depression’s like.

It wasn’t just not communicating, though – I wasn’t taking care of myself. I wasn’t taking my medication. I wasn’t washing, I wasn’t brushing my teeth. I still have problems now with my teeth because of that. It went on like this for a long time.

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Feeding the pigeons on Clapham Common

It was through my friend Anne that I first heard about Ace of Clubs. She’s homeless and she goes regularly. She persuaded me to go. At first it was scary because I didn’t know anyone, and I wasn’t speaking. But I had a letter about my son that I needed help with and I didn’t know what else to do.

Sarah

 

I remember the day Lavilla came in and just handed this letter to me. She was pointing at it, but she wasn’t saying anything, and it slowly dawned on me that she couldn’t speak. So after a couple of questions where there was no answer I realised I had to do yes or no questions.

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Sarah, Ace’s Centre Manager, helping a client with a housing issue

I asked if she did signing, because I assumed she’d been born this way – you make all sorts of assumptions, don’t you? She didn’t sign and she didn’t want to write anything down. But she had this important letter. It was about her son, who was no longer living with her, but of course I didn’t know who it was, it was just a name. And at the bottom of the letter it said, ‘If you disagree with any of this, please telephone us.’

I sat there and thought, ‘How’s this going to work?’ She can’t telephone, obviously, but nor can I because I can’t get her to give consent for me to speak on her behalf. So I had to write a letter with her looking at it and nodding if she was happy with it.

That very confusing initial conversation took most of an afternoon, and then I had to write the letter. But it was complicated because I needed to find out what benefits she was on. I was worried that she might be about to lose her tenancy or her income and with no voice she obviously wasn’t going to be able to do anything about it.

People come here with all sorts of different problems, but this was something new. I later found out from her health worker that this was a condition that had imposed itself on her, rather than something she’d chosen to do, and that a trauma had caused it to happen – although I didn’t know what. When you realise how vulnerable someone is, like Lavilla was, you become very protective.

She started coming regularly, so we got to know her, despite the fact that she wasn’t talking. We helped her with practical things, like linking her up with health services and advocating on her behalf, but I think as much as anything it was about having somewhere safe she could come to.

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Lavilla with Amy Hall, nurse practitioner from Guy’s and St Thomas’ Three Boroughs Homeless Team

But then her mental health started to go downhill. I discovered that she wasn’t going for her monthly injections for her psychosis. At this point, people were trying to help. The practice nurse was calling me and the mental health team were ringing and saying they could come and do it here at Ace. There was one particularly good nurse called Cecelia. We’d become the link to her by that point. But it’s very easy to disappear when you can’t speak. If you don’t want to come, you don’t come, and no one can call you.

Lavilla

 

I can remember when I wouldn’t take my medication. Sarah can tell you what she went through with me, trying to get me to take it. I was really bad! She took me quite a few times to get my injection, but I’d get all the way there and just refuse. I don’t know why. But because of that I kept going in and out of hospital. When you’ve been diagnosed with schizophrenia, if you don’t take your medication they can do that.

I think maybe the reason I didn’t want to take it was that I’d had a bad experience with a drug called Quetiapine when I was at the hostel in West Norwood. I had a terrible reaction and ended up in hospital for a month – for my physical, not mental, health. I nearly died.

After that I wouldn’t take tablets, so they gave me an injection called Risperidone. At first it helped, but it was like my body built up a resistance to it. It’s supposed to stabilise your mood but towards the end I was all over the place. I wasn’t speaking, I couldn’t even do simple things like bring my clothes to Ace to get them washed.

Not talking is hard. You spend your life just listening to conversations and not being able to join in. Everything takes twice as long. If you’re in a shop and you can’t find something, you just have to leave it. It’s constantly frustrating, and very, very isolating. I was so lonely.

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Lavilla attends a weekly pottery class and her work is sold at Ace of Clubs’ shops to help raise funds for the charity

I was in hospital a couple of times because I wouldn’t take the medication, once at Lambeth Hospital, the other time at the Maudsley. They were horrible experiences. I hate hospitals, but Sarah was with me through it all.

I made such a fuss about my medication that eventually they changed it, to Paliperidone. After that, things started to get a bit better. I started washing, I combed my hair. I looked in the mirror and I was like, ‘Oh my God, what have I done to my teeth?’

One day, I was at home in my flat and I was listening to music and humming along. It was something by Prince. And then I started singing. I thought, ‘This is nice’. And then my neighbour from upstairs, who I really get on with, she knocked on my door and asked if I was ok. And I said, ‘Yeah!’ And she said, ‘You’re talking!’ And I said, ‘Yeah!’ And she said, ‘Are you hungry?’ and I said, ‘Yes, I’m very hungry!’ and she said, ‘Ok, keep talking, I’m coming back!’

It was a nice feeling, to speak. It felt like a weight had been lifted off my shoulders. I’d been silent for so long, just listening. I felt happy for the first time in a long time. That was a Sunday. It was on the Monday that I went in to Ace.

Sarah

 

She came up to me and tapped me on the shoulder. That was normal, she always used to do that. So I turned around, and she said ‘Hello!’ And it was in a really funny voice, the voice of someone who hasn’t spoken for a very long time, crackly and dry. I freaked out. I gave her a massive hug and then I was just running around telling everyone, ‘You’ll never guess what…’

While all this was going on, Lavilla was just stood there, smiling serenely. I was overexcited, telling as many people as possible. Everyone came over to see her.

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Lavilla with her friend Jennifer at Ace

After that, we found out lots more things about her – like that she has a degree, for a start. She has so much going for her. She’s this sparky, bubbly person when she’s in a good place. It makes you realise that disabilities can be invisible. It must have been horrible for her, life must have been such a constant struggle.

Lavilla

 

After that, I contacted my mum and I asked to see my son. I was desperate to see him. She could hear that I was better, so she said she’d arrange a meeting, see how it goes and take it from there.

When I first started speaking to him, he was really angry with me. He was 11. He was so frustrated because he hadn’t spoken to me for so long. In a way he didn’t really remember me. So I gave him time and I got to know him again.

It took a while, but my relationship with him is so much better now. But also with my mum, my dad, everybody. I take my mental health very, very seriously. I’m in such a good place with my son, I can’t afford to mess that up.

I can not speak to my dad, I can not speak to my mum, but I can’t ever not speak to my son again. He means everything to me. I feel terrible that I put him through all that. I know now it’s part of being ill, but I’ll always feel guilty.

I’ve been better for a while now. I’ve been volunteering in a charity shop to build up my confidence, but the really exciting news is that I’m about to start a part-time job. Miriam at Ace has been helping me with my CV and she heard about an opportunity working in a factory for a company that makes socks and gives money to homeless charities. I can’t wait to start. The next step after that is trying to get a two bedroom flat so my son can live with me again.

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Miriam, one of Ace’s support workers. She helped Lavilla with her CV and found her an apprenticeship at Jollie Socks, a social enterprise

I know I mustn’t let anything risk my recovery, but I see the cuts are digging in so deep these days that I don’t always get to see my psychiatric nurse. If I don’t see her, then I see someone who doesn’t know me, who doesn’t know my history, who doesn’t know what dose I need. I see them less often than I used to, and I get less time with them.

It’s been recent, in the last couple of years, that I’ve noticed a change. Don’t get me wrong, when I do get to see my nurse she is really good. She knows me. But she’s overloaded. I see lots of staff changeover. People are pushed to breaking point these days, they just don’t have any time. There’s been talk of my music therapy group being cut, but it’s still going for now.

So, as a patient, even though you’re not well, you have to try to be flexible and work with the system, even though the system’s supposed to be working for you. It’s not ideal. Sometimes I have to fight just to get my medication. But I stand firm. I’m not ending up in hospital again.

A lot of patients get angry and have a go, but I don’t, because I know it’s not their fault. It’s the cuts.

I’m not sure what would have happened if I was going through it all now. That hostel in West Norwood is gone, they lost their funding. It’s harder to get housing. There just isn’t the same support any more. I was lucky, it would be much more difficult now. I’d probably still be in hospital.

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Lavilla, waiting for the bus back to Brixton from Ace

 

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