Who Are You Now?

Lina Lacides

In London people don’t take time to live their life, but you need to pull yourself aside. It’s your body; nobody will tell you how you feel. You are speeding because someone is telling you to speed? No. You must explain, ‘no, I cannot go faster than this, it is my body rhythm, I cannot go over it to please you’.

I’m French and I grew up on an island named Guadeloupe in the West Indies. I passed some of my holidays in France as well, because I have family there. [1] I was sometimes also on another island called Marie-Galante. I don’t think people know about Marie-Galante so much because it’s a very tiny island next to Guadeloupe.

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Me as a baby

I’m the first child in the family. I always played with my two brothers as a child because my sister is a few years younger. All my uncles have many boys as well. So when I was on holiday from school I spent my time with boys. Everything a boy was doing, I was doing. Playing football, competing for everything, challenging a game, I was in there. Fighting, I was number one in there as well! Competitions with motorbikes, bicycles. Basically I grew up like a little boy. Even when I went to the seaside I was doing some jet skiing and competing with my friends. I was – I am – a very active person naturally.

I’m happy to remember this. Speaking helps to pull the memory back.

By growing up with boys you develop a very strong attitude. When I was a young girl, my cousin the same age as me tried to tell me “go to sit down there”, you know – treat me like nothing because I was a girl. And from then on I said “no, nobody can treat me like this. I won’t allow somebody to tell me what to do and when to do it.” I grew up with a leader attitude.

I was very young when my parents separated, maybe two years old. Sometimes there’s pain in life unfortunately. People get married and don’t get along, so for the wellbeing of the child it’s better to separate than stay there, try, and put the child into any difficulty to understand what’s going on. After, we were with my mum and she was mum and dad for us. Later she married again so I had a stepfather who was a very caring, agreeable person.

My mum used to work in social security in Guadeloupe. She had an important position there. She was a very active lady, very busy all the time.

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My mother

She was everything to us. Something that was very important to me is that if I did something naughty she wouldn’t let anyone touch me. She would say, “I’m her mum. If she does something wrong, come to me and I’ll deal with her.” She would talk to me directly and teach me what was right and wrong. She encouraged me to do what I wanted to do, with guidance of course. She helped me to be myself, to develop my own personality.

My mum would dress very elegantly, with everything matching: bag, shoes. She drove a beautiful car. She was a very glamorous lady. Because I was a tomboy, people would ask me “is that your mum? Are you sure?”

As a teenager I started to change, to become more girly. Since then, I’ve been more ladylike, but with a boyish side still.

I believe a lady must be happy, respectful, and strong in mind. You know what you want to do and what you don’t want to do. Life is so difficult, people take advantage so easily, you must know how to figure out who is who and how to deal with people. I’m nice with people, but if you take my nice attitude in the wrong way, I change. I make you listen. People must know when and where to draw the line.

I am a stubborn person, but I know I must remain a lady. I like to have the last word, which is not good sometimes!

I like to see ladies well dressed, beautiful, hair well done. This is my main thing. For me, it’s a good way to go through life and to gain confidence. To dress nicely is a way to feel like yourself. It’s a way to put your person together. It’s not a selfishness because if I look after myself I’ll be able to look after people around me.

When I was a teenager, I wanted to work as an airport receptionist. I went to Paris to study hospitality when I was nineteen, twenty years old. I had all my friends there from Guadaloupe. Some were learning architecture, medicine. I was with them at all times: partying, having fun, being a young girl. It was a nice time. When you are a teenager you want to explore so many things and when you’re alone, without mum and dad next to you, you want to take responsibility and show you’re able to manage on your own. I think I did quite well.

I had my own studio apartment and every weekend I would go to my friend’s so as not to feel lonely. If we were going to party, all of us would meet at my friend’s house and take it from there. We used to go to nightclubs and dance to zouk – Caribbean music – and the next morning we would go to work or to uni. It was really funny and silly. I think it’s normal, it’s a part of growing up.

I remember one thing which still makes me laugh so much. Me and my friend – she’s now a big architect in Cameroon – we woke up the next day after a party, hungover, very hungry, and there was nothing in the fridge! I had spent the money I had for food and bills on going to party. We had to eat rice and onions, or a bit of pasta with garlic.

After some time in Paris I decided I should learn English – it’s important for work – so I left Paris and came to London. I wanted to stay for maybe one year to learn the language, and it’s been almost twenty years now. The first time I came here, I thought London was very quiet compared to Paris. For me, people in England were like angels: very polite, helpful; very friendly. I was surprised. Compared to Paris, people were very nice.

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When I came to England I just felt like I wanted to open a business. With my partner Neville I was one of the first people to open an international call centre in East London. I can’t remember exactly what year – 1994 I think. People used to come to make phone calls anywhere in the world. And we opened another business, a West Indian takeaway. We had the two businesses in the same place, one next to the other. We were employing maybe five, six people. We had someone for mobile phones, somebody for international calls, somebody for the food, so many people for the stock, you know? It was a big business and very demanding.

You had to be there to follow everything, because sometimes people don’t care about your business. By nature Neville is cool and I’m firm, so it was a balance. But I was always friendly with all of them. For me, you must have a balance in business. You must know how to be firm, but also how to be cool.

I met Neville in London. He observed me, you know, and liked the way I was at this time and he decided to speak to me. We were partners in life and in business. He was – he is until now – very quiet, very friendly and calm. That’s what I need in my life because I am very fast! He always encouraged me to do what I wanted to do. With him, I always had big projects. He was very positive next to me.

I was still learning the language. When I first came to England, I thought ‘I will never ever be able to speak English’. I knew how to say ‘my name is…’, my age, basic stuff like this. But after maybe two years I started to speak better. I realise I still make mistakes when I speak, but I go by. I went to college as well to get my diploma in hairdressing and beauty. It was important for me to do this because my plan was always to open my own beauty centre. Even now, I still hope to make it happen and I believe one day I will.

I was very busy – I’ve always been very busy. I can’t sit down doing nothing, it’s almost impossible!

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I had Crystal quite quick, maybe after one and a half years in England, because I felt I was behind when it comes to children. Thirty years old, no baby, for me it was kind of late. By this time I could afford to pay for a full time nursery for her – it’s very expensive, as everybody knows – to help me carry on what I had to do in my business, in my studies, to keep myself doing positive things for myself and my child.

When Crystal was five or six, things started to change between me and Neville and we split. When it came to business, in the end we couldn’t understand each other, we couldn’t communicate. I felt the responsibility was more or less on me. I was fighting to progress and my partner was fighting less than I was.

A few years after, I met Jada’s dad – someone I was deeply in love with, but we were incompatible. He was fire, like me! My two baby fathers are the two extremes, one calm and one fiery.

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I was in Southampton buying myself a car. I was driving with my two daughters and my niece in the courtesy car and I stopped to feed them in Burger King. I went to the bathroom and I had a terrible headache like I’ve never had before. At this time my brain just exploded. Blood was coming everywhere – nose, ears, everywhere. I had my brain injury, my brain haemorrhage.

They had to bring me quick to the hospital in Southampton. The biggest doctor was there and managed to save my life quick otherwise I wouldn’t be here.

Regional Neurological Rehabilitation Unit

This 39 year old woman from Guadeloupe collapsed whilst in Southampton on 29.12.03, complaining of left sided headache followed by confusion and agitation. Cranial CT scan revealed a large intracerebral haemorrhage [2] with intra-ventricular blood [3] and some sub-arachnoid haemorrhage [4]. No structural cause for the bleed has been found. She developed hydrocephalus [5] and had an extraventricular drain [6] inserted.

Everything was erased in my brain, completely. I didn’t know what my name was, I didn’t know I had any children – nothing. They had to keep repeating my name, where I come from, my two daughters. They had to rewind everything to make me understand: “you have two daughters. What happened to you happened to you in Burger King, Southampton”. I said, “how come? What was I there for?” They explained to me I went there to buy a car. By telling me like this, I had flashbacks, but the thing is, I would forget immediately and keep asking “what happened to me?” all the time. I felt I was becoming a very annoying person. They would tell me “no, don’t worry, you’re not annoying. What happened to you was not your fault, so take it easy”. They had to go through my life with me all the time because in the next five minutes I would forget again. Now, thank God, I remember better.

I had good people around me. My family and friends flew from Paris and Guadeloupe to be by my side. My uncle Jack spoke to me about the past to help me to refresh my brain and try to remember. Jada’s dad tried to review things for me. He would speak, sing for me. The relationship wasn’t working, we couldn’t understand each other, but he was there for me through all this challenge. He came almost every day. It was very difficult for him to become mum and dad overnight.

The worst thing was that I could not remember our three-year-old, Jada. I began to remember Crystal because she was the first one and so my brain had had more time to know her. I would ask for Crystal. It was very hard for Jada – how come my mum doesn’t know me? She believed I didn’t love her. For a little girl, three years old, it’s too much to go through this. As I started to improve, my brain began to know her again, but not deep like Crystal.

I was in three or four hospitals altogether. After hospital, I was at the RNRU [7] for rehab. The right side of my body was very weak. I did so many therapy exercises and they helped me to move my right side. I carried on moving all the time. I refused to stay in one place because I believed, in my head, ‘you’re going to get stuck together’. I moved to make sure my body was still alive. People would tell me “Lina, go to sit down” and I said “never, I can’t sit down,” because I could see other people on the bed, stiff. I said “I don’t want this to happen to me”. My right side still feels numb and I still move. I do my own gym, moving my body nonstop every day.

As well as the right side of my body, the stroke affected my vision on the right side. I can see everything, but I must be in a specific angle to see everything properly. If I look straight forward, without moving my head, I will not see everything I’m supposed to see on the right side. I need to turn my head to be able to see completely. I can see, but it’s like looking at an image through broken glass [8].

They taught me about all this before I came out of hospital to avoid me panicking. For me to understand how I’ve become. It was difficult, but now it is easy for me to accept and understand how I am, and even to explain. It takes time.

After more than a year in the hospital nonstop, I did something very naughty – I ran away. Why? Because I was so fed up to stay in hospital. So I observed somebody who opened the door and I went out but they managed to recognise this and come to pick me up straight away. I gave them such a headache. I was panicking. I didn’t know what I was doing. All I knew is I wanted to get out. I wanted to go – now!

When they found me, I said I wanted some fresh air – because for me, I was in prison. Locked every day 24/7, seeing doctors and nurses all the time. I said “it’s enough”. Nine months in rehab, for me, it was too much. They let me out, maybe two months later, because they realised I couldn’t take it anymore.

Now, I have a very good laugh about it with my daughters. They say, “Mummy, you were so naughty! How could you run from the hospital?”

Leaving the RNRU was very strange but again very cool because I was free to go. I was not in one room, I was in my own flat, watching my TV, sleeping in my bed. It was a very nice feeling, after so long.

It was very weird as well. I never understood where I was, what had happened to me, who was who, where to go, how to do things – I was completely lost. I had a live-in carer at first. I always had someone with me, otherwise I would get lost completely. Wherever I went, I observed. I stopped and said “I know there. Oh, I know there.” That was the way I was living, basically. I was looking at places and trying to remember what happened there before. Progressively, some flashbacks of my life came back. Even now, I forget, but I just need to look at something to remind me what I’m supposed to do. Whether you like it or not, you must develop some way of living.

I’m not going to lie – it was annoying having twenty-four hour care. It always made me feel I was nothing. I said “how come I need a twenty-four hour carer?” But after, I listened: I needed someone to be there, for my phone calls, for my paperwork, to remind me of so many things. To make sure I didn’t forget to take tablets for high blood pressure, epilepsy and cholesterol.

Funnily enough when I came from hospital I couldn’t remember at all how to cook. But I forced my common sense to come back. If I looked at food or tasted it, I would know roughly what to put in the food to make it taste the same. I learned quite quick because I need to eat properly to have good health. I cannot afford to eat junk food every day. In the beginning it was with the supervision of somebody, but after I had built my confidence then I was able to cook very well.

Gradually, my memory improved, but after some time I realised there was a big problem. I noticed that my immediate memory was affected. So whatever happened twenty years before in my life was there, but if you tell me something right now and I turn my head I forget immediately. I kept saying to people “can you repeat again?” I couldn’t honestly keep a conversation like I do now. I would say my first sentence and I would forget it. All this made me feel so bad. To have to ask, “excuse me, tell me what I just said?” For me, it was ridiculous. That is why I just stopped my communication with people.

I was upset with the world. I was crying every day because, for me, I was nothing anymore. Nothing at all. Why did it happen to me? What had I done wrong, why? Because, for me, I had been doing nothing bad. I was going to open another business, so why has this happened to me? For me, when you try to do something positive you’re supposed to be blessed and carry on what you want to do.

But I do believe when you put too much pressure on yourself, it’s not good. Me, I was pushing too much without realising. What I was doing wrong is to work too much, think too much, analyse too much. I was over-using my brain, I didn’t sleep enough and now I understand my lesson. You must know how to stop or to slow down, take time for yourself, because the brain’s not a machine. It helps your body to function but you must know when to draw the line. You are not a machine, you are human. You must take time to relax, to sleep, and take it easy. Don’t get upset easily, don’t overwork yourself in any level; it can be school, work – any level.

When I started to get better I asked to reduce the time the carers were there, to enable me to progress. Having somebody there twenty-four hours you’re not able to get better; you feel like you are out of it basically. It takes time. I would say the first three to four years of my life afterwards was terrible. If I tell you the amount of things I threw away … the papers I could no longer read. For me, it was bad to keep everything – to have a memory of how I had a business, a nice car. I asked the carers to throw away things that reminded me of my past. I thought, “Who am I now? I am nobody.”

I never accepted anybody telling me how to do things for my girls. I know what I need, what I want for them, what to expect from them. I knew I still had the mother instinct – knowing what’s good or not good for the child. So I didn’t want a stranger to come and tell me what to do for my daughters. I came back very quick as a mum.

The two girls were staying with their fathers. They always asked them “do you want to stay with your dad or mum? What do you think will be good for you?” and they chose to stay with mummy. I was impressed that the system observed me and said I could look after my children, with full supervision – a sleeping-over carer. It really worked. They could have tried to keep my daughters away from me but we were able to come back together as a family [9].

In October my youngest daughter Jada will be fourteen. She’s a very active girl. She likes dance and sport. She is slim so she can move easily. Jada is a strong character, she likes to challenge people! Sometimes she reminds me of myself as a young girl. Recently she told me she wants to become a lawyer and I think it’s a good idea.

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Jada and me
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My two girls

Crystal’s more intellectuelle, a little more quiet, and she likes fashion. She is now at university in Coventry and comes home sometimes for the weekend. I am very happy when she comes. I miss her. She makes me laugh so much.

My daughters are very, very good and helpful, no matter what. They helped to take responsibility from the beginning. Crystal was big enough to remind me what I had to remember. Of course, the carers helped during the day. But if they weren’t there on the Saturday, for instance, Crystal is the one who helped me with my reading, helped me know what’s going on. As Jada got older, she helped as well.

My girls were hurt overnight when I became ill. I feel bad for them because they are young girls and they’ve become young carers. I want them to enjoy themselves, to have light hearts. I try to give them the material things they want, but material things are not enough. Their fathers support them as well, but they grew up very quickly.

They have become very strong. Little problems at school or with people, they don’t really take it seriously, because they know to be healthy and be alive is the most important thing. People cannot shake them easily, basically. They are young but they know what is going on in life.

I wanted to be able to look after my two girls but the brain haemorrhage shut down all my plans. So now, for me, they need to learn to become somebody, to be able to feed themselves, to have a nice car if they want, a nice house, a good husband – I want the best for them. We communicate a lot. I tell them “the beginning of all this is your school and nothing else.” It’s all I ask. Be somebody, go to high school, focus on your destiny, don’t focus on boys. Be yourself. You have to be selfish, think about you first and, after, you will be able to think about others. You first.

I chose a Catholic school for them – one with girls only. Jada asked to change to a mixed school and I said, “I’m sorry, you will have to carry on Catholic school to the end”. I explained to her why. When you go to a mixed school, sometimes the boys – it’s normal and natural – will try to attract you and disturb you in your studies. So I said “No. You have time for this when you go to uni. Take things step by step.” I believe in the Most High God to help me to guide my daughters.

It is who I am as a mum. When it comes to school I’m not cool, I don’t want to be cool! I tell them, “bring home good marks for me and I’ll be super cool with you, the most happy mum ever.” If we’re on holiday we have fun, we laugh together. I am a cool mum when we go out to enjoy ourselves.

Being normal before and becoming the way I am now is a big problem for me. I still feel there is a big gap in my life with the amounts of confidence I have now, but at first I couldn’t speak to anyone. I’m not a shy person naturally but I became very, very shy. I never believed I would be able to do anything when I came out from hospital because for me, in my head, I was finished.

When I came to Headway I was very embarrassed, but coming here opened my mind. Why? When I came to Headway I realised I’m not the first one or the only one. I realised that anything can happen to anybody at any time. I said to myself, “why should you complain and be negative when some people cannot speak at all?” This gave me the strength to carry on.

Headway enables you to speak, to keep a conversation with someone – an ability I believed was dead. Sometimes I ask a lot of questions, maybe without realising that I have asked the same question ten times, but in Headway I don’t feel worried to have to ask again and again because they will know why I ask so much. They will just answer me and not make me feel … any way. That’s very important for me. It has helped me to be more upfront, more aware of what’s going on around me. Really, coming to Headway has helped me put my mind, my brain back together.

I still feel that outside people would never listen what’s wrong with me. My daughters are number one who know what’s going on and my support worker and my close friends and family, and Headway of course. For example, I can’t read anymore. The reading part of my brain is just gone. It stops me to read, but it doesn’t stop me to write. I write quick to communicate to other people, but I’m completely unable to read it back. Normal print in books is impossible because my brain doesn’t recognise anything. When you have big capital letters and pictures, like a newspaper front page, I have very good common sense [10].

For me, when you are not able to read any more, it’s a weakness. You need to read absolutely everything in life to progress. How can I be aware of what’s going on around me if I cannot read? If you tell me something, I need to listen a lot and try to remember. Again, I’m very forgetful. It’s difficult.

So if I need to read something I always say “Excuse me please, can you read this particular point for me because I forgot my glasses?” I don’t want to go into the explanation. You develop a way of asking what you need to avoid people asking you why. And I manage this with a big smile of course.

On the other hand, if I really need to know something, I would always speak and ask, to help me to progress. Even if you feel ridiculous and stupid, you still ask. People can’t judge you because what happened to you can happen to anybody. Before my stroke, I saw people walking in the street with weakness, walking funny, but I never believed I could have such a pain in my life. People need to know more about this.

I don’t want people to feel mercy for me. I have things for free, I take it; because I will not sleep in the street, I take it. But I never planned my life to become disabled – to have things for free.

I never say “I cannot do it” because nothing is impossible. It is always good to try. I want people who are going through the same thing to know: you are what you think. If you can’t do something at all by trying, then you can say, “I tried, and I can’t do it”, but don’t be negative at first. When something happens to you your life doesn’t end. Never give up. It depends on how you think.

If you’re surrounded by good people, you can make it. My Uncle Jack took me under his wing as soon as he heard I was unwell. Now he can see me getting better and he’s more relaxed. Instead of coming to every meeting, he can look after me from afar.

So now, honestly, I forget about it and I live my life. I feel like myself. I’m more responsible for myself. I still have help from a support worker for paperwork and to remind me to do things. Even now, I am not 100% because of my reading and my memory, but I do everything else: cook, clean, drive. Driving sticks in your brain forever. When I heard I regained my licence I was laughing, smiling, jumping about. For me, it was a sign of getting better, but also as a freedom it was very important for me.

My father was a well-known singer in the West Indies named Joseph Lacides. I did not really grow up with my dad but I was always close to him and he was singing with me and for me all the time. Every time I go somewhere in Guadaloupe and they ask me my name, they know straight away that I’m the daughter of Joseph Lacides. I was very proud of him.

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Joseph Lacides LP, 1983. Photo and artwork © Henri Debs/Disque Debs
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With my dad and the two girls at Disneyland Paris

My brother Luigy and me always tried to prove to our friends that we could sing as well as our dad. Even though it was bad, we tried! We would compete with each other to be the best. Luigy is better than me – it’s a fact! I just didn’t want to admit it.

My father died just after my brain injury. It was a very strange coincidence for me. The thing is, they never told me anything when I was in hospital. They only told me after maybe five, six months. I was very sad for it.

It’s the way it is: you aren’t born to stay forever on Earth. What should be, will be. I said to myself, “my dad died, but where he is now is better. He’s peaceful.” I turned all the negative side of it into positive to be able to challenge it and go through it. I always think ‘nothing’s impossible, anything can happen at any time’. You must be ready for anything.

When I had my stroke they put a tracheostomy: a hole in my throat for a tube to keep me breathing. After, there were problems with my airway, my trachea. A year after my stroke, my airway collapsed and I stopped breathing. Mr Ghufoor [11] is the number one doctor for me. He is one I will always remember because it is him and his team that managed to keep me alive. Now I have a stent [12] in my throat to keep my airway open. If you remove the stent, what happens is that my airway closes back straight away, so it means I could die immediately.

Regional Neurological Rehabilitation Unit

On removal of her original tracheostomy tube, Ms Lacides had a mild stridor [13] and laboured respiration. Emergency bronchoscopy revealed a high tracheal stricture [14] which required dilation.

She was admitted to the RNRU on 2.3.04 at which time she had stridor, necessitating urgent treatment. She was unable to maintain her airway and subsequently suffered a cardiac arrest requiring a prolonged CPR.

She currently has a stent in situ which has been regularly reviewed by Mr Ghufoor’s team at St Bart’s. She has undergone laser removal of the damaged tracheal tissue at St Bart’s but will require further treatment.

My voice has changed completely due to the problems with my throat. When I left hospital I couldn’t even speak because my voice was not coming out properly at all. Now, I can speak and try to keep a conversation but when I listen to me speaking, I know it’s not the best. But I will not let it put a barrier in my life. Some people cannot speak at all so for me it’s a blessing to be able to speak. Even if it is not very nice, I still speak.

When I listen to my voice I don’t like it, but it doesn’t stop me enjoying music. When I joined the choir at Headway I said “I don’t mind singing jazz songs”. I thought to myself that maybe it would be good for me to sing jazz music because the big singers in jazz often have rough voices. I would try to sing classical music but I knew it’d be horrible, I knew this! I’m a perfectionist. I want to do things perfectly or not at all.

Every five or six months I have an operation to keep my airway open. I’m not scared but I don’t like it, because of my two girls. The anaesthetist is very good at talking to you in different ways to help you relax before they administer the injection. “Look at this, Lina!” I know all their tricks now!

I had one of these operations two weeks ago. It’s strange because it seems to reset your body each time – I have to learn again how I am. Even the taste of food – sweet, salty – seems to change. Honestly, the medication makes me irritable, so I feel sorry for my two girls at this time because they can see their mum is not how she normally is. When I’m like this, I get annoyed if they move even a handkerchief on the table, and it’s not good.

The plan is to see how they can change my airway in the future. Instead of a transplant, which would be rejected, they may be able to grow the cells for it. They may eventually try it out on me in the future, but it’s something they still study. I’ve agreed to be the guinea pig, because I know in my mind I have a stent in my airway – I’ve lived with it for almost ten years – but it is still difficult for me to understand it and accept it.

I think a partner is important in everybody’s life. Somebody to depend on, somebody to speak to, to be happy with. But I don’t know how to start, how to explain to a man, ‘you know, I have a brain haemorrhage’. For me it is a big barrier in my love life. How is it that if a man looks at me I turn my head, I don’t smile?

I think it’s a very strong problem I have in my head after my brain haemorrhage. Therefore, I’m alone for more than ten years.

People look at me every day. I can’t say I pass … inaperçue, unnoticed. Sometimes I smile to people but naturally I’m somebody who smiles easily. I don’t want to walk in the street with a natural smile on my face and attract the wrong person because I’ll switch, I’ll reject the person systematically. I want to be able to smile and talk to somebody nice, somebody I really like. But unfortunately in this life you smile and somebody ridiculous will look at you and make you upset.

The problem for me is I don’t trust men so much. Sometimes girls complain about their boyfriends and it makes me block myself regarding men. Maybe I will trust one one day but so far I just see them as people who try to use somebody. I’m confident, I have my own personality but sometimes I can be a bit weak so I don’t want anybody to take advantage of this. I put up a barrier. Unless somebody is close to me I will explain I have a carer to help for my paperwork, for my reading – that’s it, nothing else. I’m conscious of my memory. It’s not everyone who understands the effects of a stroke.

Maybe men will understand me but it’s me, the problem. In my head, they will judge me more than understand me. If somebody asks me to read something, for instance, I have to explain why I cannot read. They may think I’m stupid. So I will need to go into a deep explanation and just thinking of this puts me off. If the situation needs to be intimate, again I feel I have a complex. But I know one day I will need to face it whether I like it or not. Otherwise I will end up alone for the rest of my life and I don’t want this. I want to have a companion.

It is very important for me to know somebody out there will understand me and take me as who I am without judging. It’s something I need to work on. I put everyone in the same bag. But everyone is not the same. I need to find a way to explain.

Since the beginning I’ve lived in East London, always in Stratford. It’s changed very much. I still remember how it was twenty years ago: everything was very old, very damaged. I think what they have done to Stratford is the best thing ever for the economy of Newham. People are able to come visit more, buy more, discover what’s going on. But there are so many people now coming to live in Newham that things are not the same. It’s very crowded, it doesn’t feel so safe.

paralympics
At the Paralympics with a group from Headway East London

I went with Headway to the Paralympics. For me it was something very beautiful to see disabled people doing some sporting activity, having confidence in themselves. The Olympics was beautiful but now they need to use it. I think the best way to help the project go forward is to have concerts there – to attract people to come and to make some money.

I want to be useful in life again. I volunteer at the Local Space youth project in Newham. I really like to do this; I want to help young people in Newham to progress. You have to go on the same level as them, to make them feel relaxed. I ask them what they want to do. “What will make you happy?” For instance, if they like music they can go to the centre in Stratford who will help them to choose if they want to play piano or guitar or sing. It’s good for young people to keep busy doing something – basketball, swimming, something they like, to avoid them being in the street.

Sometimes young people believe nobody likes them, nobody listens to them. People complain about young people’s behaviour but we need to open doors for them. We need to help them to gain confidence and become somebody tomorrow. Activities can’t be expensive or they won’t be able to do it; it needs to be free or a minimum of money. There are good activities for young people in Newham but unfortunately they always ask an amount of money some people can’t afford so it puts a stop in their life.

It’s difficult because they are growing up in a cold country. No seaside, no big fun for them – so we need to think about them, to help them grow up happy.

Everybody needs a balance in life. People in the West Indies take it easy. They don’t rush to do anything because, for them, they have only one life so they’re not prepared to rush every day then have to die. For them, you must have a proper balance in your life. You must work, but take time, travel a bit if you can afford it, have some parties, invite friends, have a barbeque. I mean, I love it. It’s the way I grew up.

What makes me happy is to listen to jazz music. I laugh, I smile, I just relax. I feel happy to clean my house with my music on. I keep everything well organised and clean. My daughters think I’m too eager to tidy and clean but it makes me feel happy. I can’t live in a messy and dirty house, otherwise I’ll be super upset and nervous. It’s not possible for me to sit down in front of the TV 24/7. I need to go out and move, communicate with people.

I still do plenty of things but I try to be more careful now. I am more aware. I try to remain calm. Try! I find it very difficult to be calm!

If I open a beauty centre one day I want to do it properly. It’s the thing I wanted to do before I fell sick and it’s something I have deep inside. I want to help young ladies to look after their body, their skin and hair – to have a good start in life. I would need support to manage the paperwork. If I had some financial help somewhere I’d be willing to take it and try it.

People would need to step in my salon and feel welcome and relaxed; to come out feeling beautiful and confident. I believe a woman needs to look after herself. It’s part of being healthy, living life. You need to do things for your own person to avoid you having any health problems, any problems in general. I want to live very long.

I think it would be in the government’s own interest to manage to catch people who can do something still and to fund them to work, with support. Not to impose anything, to put them under pressure, but ask them what they want to do. If it happened to me I would be happy. To feel I am somebody. I am somebody in general. But to feel I am doing something positive in the community.

© Lina Lacides / Headway East London (2014). All rights reserved

Footnotes

[1]

Guadeloupe is an overseas region of France and sends deputies to the French National Assembly and Senate.

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[2]

Intracerebral haemorrhage: a bleed inside the brain tissue

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[3]

Intra-ventricular blood: blood escaping into the central cavities of the brain, normally filled with cerebral-spinal fluid

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[4]

Sub-arachnoid haemorrhage: bleeding between the membranes that surround the brain – the arachnoid membrane and the pia mater

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[5]

Hydrocephalus: an abnormal increase in the pressure around or inside the brain caused by a problem with the drainage of cerebral spinal fluid

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[6]

Extraventricular drain: a tube inserted into the ventricles to drain fluid and reduce pressure inside the cranium

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[7]

RNRU: Regional Neurological Rehabilitation Unit – based at Homerton Hospital

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[8]

‘Like looking at an image through broken glass’: the loss of vision on one side is described clinically as hemianopia. Hemianopia affects one side of the visual field in both eyes (in this case the right side), rather than affecting one eye or the other. It can also be associated with visual neglect – the loss of awareness of that side of the visual field, which causes the person to stop attending to things on that side of their vision

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[9]

Government advice for parents with disabilities states that “a social services team should not make a judgement on your ability or ‘capacity’ to be a parent without first assessing, and then offering via a care plan, your need for support [sic]. In a situation where children cannot live with a parent(s), or a child’s well-being needs to be reviewed, it would need to be shown that it is not because of a lack of support to you.”

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[10]

Reading: acquired dyslexia (sometimes referred to as alexia) is common after left hemisphere stroke. It can refer to the loss of ability to read or understand words, sentences or letters. Lina has difficulty in recognizing written sequences of letters.

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[11]

Mr Khalid Ghufoor is a consultant specialising in ENT: ear, nose and throat surgery

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[12]

Stent: a tube inserted to support the walls of the windpipe

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[13]

Stridor: a loud, high-pitched rasping sound in breathing – a symptom of interrupted air flow through the larynx

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[14]

High tracheal stricture: an abnormal narrowing of the airway

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