I was like a picture on the wall. Something to be seen and for people to view. I was there, but I wasn’t there as a person within herself.
1 Twenty years of my life disappeared
I was born on the second of November 1963 in North London. I come from a family of ten altogether: mother and father, seven sisters, including myself, and one brother. My father was working in London Transport and he was busy doing night shifts and day shifts. My mother usually stayed in and did housework, washing, this that and the other.
It was very much a normal family relationship. Sharing rooms and all the rest of it with sisters, nicking each other’s clothes. We all went to school and some of us went to college or higher education, but most of us, after leaving school, found ourselves a job and a little bit of money, and then after a while we found ourselves accommodation. And we settled ourselves, so to speak. I worked in a solicitor’s office in the Strand. Later, I’m told, I was a dental nurse and hygienist.
At the time when I had the accident I was twenty-seven years of age. It was on the 25th of November 1990. I have no memory of the accident and due to the brain injury twenty years of my life disappeared from within me. With me myself, with everything that’s placed within myself, I have no memory. Nothing’s placed.
The memories I do have are quite floaty. I remember being in the garden with the washing line hanging out, playing round with balls, and sort of like, not disturbing the washing line and the clothes on it. My mother saying “come on now, be careful. I’ve just washed those clothes, I don’t want you to dirty them.” I know we had bunk beds. We used to fight, who was going to be on the top! “It’s my turn to go on the top!” And I remember the sandpit at the old park where we lived.
Apart from that, when it comes to my childhood, I don’t have any other essence at all.
2 The impact of the crash
I was in a van, and I was in the middle, and, I believe, was only wearing a waist seatbelt, so when the crash happened my whole chest and my head did go into a bang. And I believe with the impact of the crash, with me being in the middle, whatever was at the back of the van might have come upon me, so to speak. At the back of my head on my left side I did have a little semi-hole, a little circle. I believe that’s where the actual bang did sort of place itself upon me.
My brother Martin did say that when I was admitted to hospital I was still semi-conscious. Apparently with my hands and my legs I was waving them about so I was disturbing all the tubes and other things. After three days they decided, for my best interest, to sedate me and place me into a coma where they could operate and place me out a bit better.
Due to the accident both of my legs were broken and my femur and hip were fractured. My nose was fractured. And then the lip, especially at the bottom section, with the impact of the crash it did break and was shattered quite a lot. In that area you can’t really feel it. If I’m not wearing makeup you can semi-see (if you have a magnifying glass!) that I do have a little bit of a scar line. I did have plastic surgery at the hospital.
I stayed there for seven weeks, from the 25th of November 1990 until ’91, just after Christmas. I believe I did go home for Christmas, maybe one or two days, and then I was taken back to the hospital.
I was in a wheelchair for some time so in many ways I’ve done very well physically. What’s so unpredictable about brain injuries is you are sometimes paralysed and you don’t have full operation of certain sections of your body. Even though you want to do this and want to do that, your body doesn’t relate that - it doesn’t function as normal, so to speak. And sometimes I feel quite happy and quite honoured, with the brain injury I did have, those elements weren’t interrupted.
And what I feel really happy about is all the pins and plates that were placed upon me once upon a time have now gone. For my left hip there was a pin placed in there, and I thought it was like a pin you use for pictures on the wall and said “yeah I’ll have it out”. So many years ago I went to the hospital to have the pin removed, and at the time I said I’d like to keep the pin and it was given to me, but it was much bigger than I thought. I’ve still got it at home. It’s hard for me to believe that that was once upon a time placed within me. It’s a bit haunting. In many ways I’m pleased the pin it has been taken out because the bone area has placed itself back together the best it can. But unfortunately it has reduced itself in size; that’s why I have one leg shorter than the other.
It’s very hard for me to accept and truly acknowledge what happened at hospital, saying “oh, for heaven’s sake, they are all things that were done for my own benefit when they treated me.”
I don’t remember one second of being in hospital. Understandably, for the first three weeks I was placed in a coma. And then afterwards I became semi-conscious and had some realisation of myself. But, alas, within me I have no memory of that. I was informed by friends and family that I dismissed myself from hospital, which I find quite hard to visualise because at the time I was in a wheelchair.
It was twenty-one years ago, but even today I have no full realisation that the situation on the 25th of November 1990 did actually occur. I don’t have any true realisation that I have received this injury, so to speak.
3 A picture on the wall
Going back to my parents’ place when I left hospital was okay, but I couldn’t really distinguish it or recognise it. It was like a new house, so to speak. I believe at first I was in the basement where the lounge is so I didn’t have to go up the stairs. Then my mum and dad were looking after an old age pensioner so I had to go up the stairs and have a room there.
At home, for the time after leaving hospital, I found it quite hard to place things out. For many months, I didn’t do anything individually myself at all. I might have made a cup of tea or coffee or had a bath. But I think outside the home especially I didn’t really place any pegs onto the washing line at all, so to speak.
In many ways, I was like a picture on the wall. Something to be seen and for people to view, so to speak. I was very much hidden. I was there, but I wasn’t there as a person within herself; I didn’t really have a true identity, so I never really did pick myself up and see how I was, there and then after the brain injury.
The memory of that time is not one hundred per cent accurate. I remember sitting in the dining room with the big table and there was a television there and the radio. In many ways I was totally in a dream world within myself. I couldn’t fix anything together, realise the home I was at. I would have loved to have played activities, games, this that and the other, where you are more conscious within yourself and you’re placing yourself out a bit. But doing things was quite frustrating, so I did not approach them.
I’m not sure what it was like for my mother and father. I didn’t have that intercontact with them at the time. Unless it has happened to you, with the shock and trauma that your child has been involved in an accident, it’s very hard to know how you would deal with the situation.
I think I was a bit stuck in the mud and so were they. We didn’t know how to advance without help and advice.
My father was like my guardian angel; he was very protective with me. When it came to Social Services and things like that he would do all the talking. I would just say ‘yes’ or ‘no’. I didn’t connect within the immediate self, so it was difficult for me to think, feel, or make decisions.
Everything that was written to me, was written to me care of my father. He would open all the letters because when it came to reading and writing I was totally out of touch. I had no realisation of what was going on.
I was a bit frightened to do things individually myself. After a while I decided to go for walks by myself, just round the block, and that was quite good. Inside the home, at the time, we ran out of milk and I said I would go to the shop and buy some. I thought, ‘this is such an experience to do, for me to individually go to the corner shop and buy some milk!’ Due to that circumstance, getting the milk, you realise how enclosed I was within that situation. It was quite a shock for me to sort of definitely place things out: ‘I have this capability’.
4 What is poll tax?
After a while I was referred to a local hospital for rehabilitation and I went there twice a week, I think it was. What was quite good was they had previously had people who had brain injuries. At the time when I came I was the only one there that had a brain injury. I did shopping and cooking and I asked things like, “what is poll tax?” because poll tax was going to be introduced. I am told I did go on the anti poll tax marches before the injury but again I have no memory. Finding out about society again, I needed to be boosted up and told the facts.
Physically, the rehabilitation was very good. When it came to me and movement, walking wasn’t so easy, but I believe I did get around. I know I did bring the wheelchair back to the hospital, which was nice. But sometimes I feel quite sad because I have no memory of being in a wheelchair. I wish I could. It does haunt me.
Mentally, it was tying my shoelaces up, so to speak. When it came to reading classes and me finding out my skills and reading abilities, there was a little bit at rehabilitation, but it didn’t expand. I suppose I needed a realisation that my brain had been damaged, and the elements of it especially.
I mean, everyone used to just focus on memory, memory, memory. Yes, that did happen. But I also needed to put a new coat on and to wear a smart coat and to have that coat showing to everyone; to identify myself as I was there and then, and to have a realisation of what had been wounded and needed to be repaired again. And then when it comes to things like reading and writing, my mental capabilities, and all those main assets that you do have, just to get those planted again so they could grow more freely.
But because I did so well physically, in many ways with us as people looking face to face at each other, it’s so much easier to look at the physical side and say “you’ve done so well there”. So in many ways you are a little bit hiding away from it.
With certain people, especially if they lose their memory, it’s very difficult for the family and friends to close that door and to open up new doors and see what’s outside and be futuristic within the situation. Sometimes the family and friends are in such shock and trauma of what has been placed upon you, they’re not totally free within themselves.
What I actually think is good for people like myself after we are free to leave hospital is not to go back to our family for a month, but to go to a centre especially for people who have received brain injuries to revitalise themselves again – to see themselves as they are now, today.
You don’t want to hide from yourself but, at the same time, when it comes to friends and family it’s nice that that area is slightly sheltered from you for a period of time until you can see yourself, and then, once you’ve established and realised yourself a bit better, approach those things. So have a nice slow introduction back into society. And especially when it comes to memory, to have a realisation about society today – like with benefits and the legal system and all the rest of it. You need to find out that situation and see it freely. You need guidance, help and assistance.
Because then that person is a little bit stronger and more built within herself to approach these elements. Otherwise you’re very dazzled. And you do see lots of clouds up above you and you can’t see yourself properly.
5 A place of my own
At the hospital where I went for rehabilitation, there was a social worker. I believe, at the time, I actually requested that I’d like to live by myself. I do remember it a little bit. I went in, and it was without my father. I said “I’m interested in getting a place of my own.” I was registered with a housing association and I got a flat.
It was on the third floor, which was too high for me with the stairs. The bathroom was communal. It was just big enough for a bath and a sink. When I look at it now I’m absolutely amazed, with the council not recognising my physical disabilities and then with me actually accepting that form of residence. But at the time I was so pleased that I had a little bit of independence for myself that I did take the offer. I didn’t fully look around and see if it was suitable for me, and my family didn’t know I had taken the flat until it had been placed upon me.
My first partner after the accident was a barman at the pub I used to go to with my father. We hit it off for a while and he came and stayed with me. But in many ways the relationship wasn’t really one hundred percent there, so to speak. Nothing was really fulfilling itself or blossoming. And what actually happened was I told my father and he came in one day to my flat and my partner was there. My father said “okay, you can get out now. Pack all your clothes.” I did ask my father to do that.
After I moved out of my parents’ place I came every Saturday or Sunday and had dinner with them and occasionally I would go out to the pub with my father to have a drink or whatever. I didn’t really have any individual friends myself.
While I was living in that flat I was burgled once, twice, three times. A disability advice service referred me to a different housing association and I was offered another flat. That was quite a good place because there were a couple of other people that also needed supported housing. I used to have a lady that came once a week to see that everything was okay; anything I needed. I’m still with the same housing association. I’ve moved now and it’s ‘normal’ residents, so to speak. We all have a communal garden. We are quite friendly and trustful to each other so it’s quite a nice atmosphere. And I’m on the first floor, which is better.6 Partners together
With my partner that I have now, John, I feel very comfortable and happy with him. We’ve been together for nearly twenty years.
In many ways John wishes me to become an independent woman, so to speak. At the same time, he likes doing things for me. In many ways, he likes to contribute as much as possible especially at the home situation. So I wouldn’t say it’s at a total balance, but when you look upon it sometimes it does place itself into a balance. He does most of the cooking and he does the ironing. He doesn’t wear an apron, thank goodness!
7 This is now the future
Haunted is the right word for people with brain injuries that have no memory of many decades. I used to go to places and nothing came back: no memory, no essence. Now, I’ve decided to shut that door.
After the accident my brother and sister brought me to the place I used to live, but I didn’t recognise it. I was a bit upset with myself cause I thought, ‘nothing shows anything. I don’t have any sense or any memories.’
I was just outside in the car, and I didn’t really want to go in, but they went into the flat and got a couple of my items. That must have been ten or fifteen years ago.
One of the dentists that I used to do work for before the accident invited me to spend the day at the surgery as a volunteer. The only thing I realised was to get the mirror and tweezers and lay them out in the plate but apart from that nothing else was still placed within me. It was totally blank, a totally new thing for me to do.
I didn’t truly want to admit within myself that nothing was there. I suppose I was a bit bewildered and intrigued myself that, alas, this is what it is now.
So what I feel is to leave that alone, shut that door. Because many times if you go back to what was, once upon a time, you will be haunted. You are not the same as you were before, so you are defying yourself a bit. I feel quite pleased with myself that I released myself from it. I thought, ‘good’.
It’s difficult for family and friends, because they go back to the past. Most of the friends I had before the accident, they have all disappeared. They are people I did once upon a time know but they find it hard to socialise with me because they have no idea of what they should say. They didn’t know how to talk to me. What to say to me.
One of the things that did hurt me was with an old friend, Joyce, who came to Canada with me. I went to Canada to be a nanny, in 1984 I believe it was. I stayed a year but, as with other things, I have no memory of it. I did see her with her family in a cafe and I did go and say hello, but then I decided not to sit at the same table with them. In many ways, there was no connection any more. I thought ‘it’s no longer as it was’.
Jenny was another good friend. We met at a dental surgery I used to work for and she was in reception. We did have quite a good relationship before the accident. We did see each other after I came out of hospital, but then after a while she couldn’t quite figure me out.
That was many, many years ago. It’s hard to say goodbye, but sometimes you do have to shut that door and open a new door and see what you shall find. This is now the future and this is what is placed.
What I’ve done with all the clothes, photographs, certificates from before the accident is I’ve put them in the store cupboard and placed them away. For example, I went to a family do and I wore a dress, and my sister actually told me, “That’s the dress you wore to my wedding”. That did hurt me a little bit cause I have no memory of her wedding. It did haunt me, so I got rid of the dress.
I used to do kickboxing and I was hoping that something would come up, but nothing did. So all the kit, like the gloves, I gave away to charity about seven or eight years ago. I thought, ‘that must have been quite a joyful adventure, but with me now, I cannot do that’. The only thing I kept was the mouthguard, cause I thought ‘that might come in handy one of these days!’
Many letters and photos have gone into the recycling bin. I didn’t feel happy doing it, but I thought, ‘it’s for the best’. With people who do have brain injuries, depression does come upon them sometimes. I wouldn’t say go into completely a new door but don’t be so haunted. With all these things that happened a long time ago, clear them away for a year or two years or three years until they’re a little bit more stable and realistic within themselves. And then, if need be, show them or place them round.8 A normal balance
When it comes down to socialisation and communication, I think I have a normal balance on that aspect. I can associate nicely, I can say, “hi, my name’s blah blah blah”, I can get in and introduce myself and sort of like see that person nicely.
But I’m not a hundred percent clear on that pathway. I wouldn’t say I’m shy, but I don’t venture in so much. I can’t really get in to current events that are today and what was yesterday. I can’t have the full circle of it, I don’t know the true ins and outs of it. So I can’t get involved in it if I don’t know. If they talk about politics or sometimes health or whatever, it’s not always that easy for people with brain injuries to have a discussion or a debate.
I suppose in a small way I am a little bit frightened of meeting new people. I suppose I don’t know where it will lead because with the past I don’t have any clear pathways I can look at joyfully. I don’t have a clear perspective of it. It’s a difficult one.
I suppose with the friends I had, Joyce, all the rest of it, I don’t have that much confidence within myself.
I do tell people about the brain injury if need be. Not automatically, but if we both share the interest and we can both see on each side of the story. In many ways it is like exposing myself a little bit. Apart from those people I tell I have received a brain injury, I am in society treated as normal. It’s nice to be treated normally, of course, but then for a person that has received a brain injury, sometimes ‘normal’ is not a balance that can be placed upon you. You may look very good but you have still had that element stolen away from you.
9 Persuasion and enthusiasm
I do voluntary work at the local hospital on a Monday. It’s clerical work and if there’s any volunteers that are needed, I do come in and help. It didn’t happen overnight; I gradually built myself into that area. It’s nice just to be placed in that area and if anyone needs any help or assistance to do it freely. It does bring me an enjoyment to help other people.
I attend an art group for myself and I also volunteer at an art class for children with learning difficulties. You help the pupils with their art work and see if you can cheer them on and congratulate them and say “come on, it’s getting there”, just to give them a bit more persuasion and enthusiasm upon it.
It does give me a lot of pleasure, especially when it comes to artwork, to see that they can do things like that and they have the ability.
Sometimes it’s very easy to identify other people’s problems but then you don’t always see yourself clearly. It’s all very well to help other people, but then who should help me, eh?
And when you have no memory how can you reflect upon yourself? I mean, when I had the pin taken out from my body, I saw the size of it and thought ‘that was placed inside me.’ But I didn’t want to believe it.
Mentally I am improving a little bit. But having such a chapter of your life taken away from you, it’s quite bewildering. It’s like someone has stolen it, but then who on God’s green earth has stolen it?
It’s like you’re starting off as a child again, but alas, you have an adult body. So how can you respond to an adult body like a child that’s redeveloping, relearning and has to establish all these elements of what was, once upon a time?
I would like to have a clearer picture of myself. I had counselling for a few years and I’m going to have it again soon. I would like to have a one-to-one with someone and just talk about the A–Z of life.
Even at Headway I do find it easier to help other people than to help myself. You are a little bit hiding from yourself. Subconsciously you’re not really accepting within yourself that a brain injury has happened to you.
If I could accept truly within myself that I have received a direct brain injury I would feel much more comfortable and at ease. I know that I have received it but because I have no memory of it I can’t fit the pieces together.
10 Never eat shredded wheat
Many years after the injury, I got involved with Headway. I think someone from the council introduced me to Headway East London. It was so nice to see other people like yourself! You didn’t feel you were the only person on earth that had received the brain injury. It did release you a little bit from within yourself to know that you were not so alone, not so isolated.
Coming here to Headway East London and seeing some of the other members that come here, it’s so unpredictable what the impact of the brain injury has done to you. With each of us as people, no-one has the same layout of the brain as another, so to speak. Some people don’t have it as bad as others when it comes to memory. So it’s not, ‘I’m better than you, mate’. There’s no competition or ‘I can do better’ or anything else. We’re all sort of placed around.
People with brain injuries don’t always have a realisation of certain things that’s perhaps available for them to do. Sometimes they’re a bit afraid of making the first step. Sometimes they are very much sheltered and not allowed to approach and do things so much. So with Headway especially you don’t feel so imprisoned and caged in.
Many people with brain injuries don’t find their true identity at all. They don’t really go off and do things for themselves, so they do become quite rusty. And sometimes with this rust it does give off sparks! People with brain injuries don’t always notice the positive or negative within their behaviour, so to speak. So sometimes, with that, it’s nice if you’re told it’s good or bad. So you can adjust and do something about it in a positive way.
Headway feel I’m quite capable of putting things out, so they put trust in me. With Headway North London, I have been a committee member. I find it really sad and upsetting that Headway East London is the only centre that exists in inner London. That’s haunting for a person that has received a brain injury, because some people don’t have a place to go to. Perhaps in the future it can spread itself out a bit and be more known to the general public. What I’d love to see in London - with the old saying Never Eat Shredded Wheat - is to have one Headway centre in North, East, South and West. One place stuck on each area, so to speak! [1]
If the Lotto placed itself upon me, I’d love to open a centre for North London. I think it would be a really nice starting point. Show the foundations of it first in London and once it has a nice circle and a routine, then expand it.
With the general public, I would like people to be less frightened of brain injury. It’s a difficult one. We can find it a bit scary because you don’t know the outcome of that person and what they will be like. I would like the general public to have more understanding and acknowledgement of what Headway is. To open the door for Headway East and North London, for us to become more noticeable so we’re placed in, so people recognise us. So people respect us and say, “it’s good that you’re doing that”.
11 Open many doors
I’m quite comfortable living in London. When it comes to the country, you’d get thoroughly bored and bite your toenails. Crops don’t grow fast so you see them in the morning and then in the evening they’re the same! So in many ways I’m happy to be in London because there’s more activities that are placed out.
But one of the problems for people with brain injury is being creative and productive within themselves. Sometimes it is there, but it’s so rusty and torn to the many different angles, it’s hard to fit it together again. And twiddling your thumbs and watching television isn’t that enjoyable. But you don’t always have self-belief, and it is difficult to look back and see what you did do once upon a time. And then perhaps you would try that element but it’s not the same.
What would be nice is to be a bit more free and adaptable within yourself and your thoughts and theories and ideas, and to let it flow, so to speak.
One of the problems with me is having the motivation to do things, like with reading. The thoughts are sometimes placed there but I don’t always have the willpower and the free spirit within myself to go ahead and do it. It’s the motivation within yourself, to go get it - fully alert. And once the motivation’s there, once the alarms go, to sort of programme yourself and work upon it. What I feel, thoughts and all the rest of it, I don’t always approach. Unfortunately the bee has not got a hive to go into!
When it comes to books I’ve got a heart for it and I’ve got two bookshelves at home, but it’s getting there and doing it. With reading, it’s for your own personal self, and no-one else is involved. So you have to say “come on now, you can do this”. At the moment I’m reading The Return, the second book I’ve read of this chap Hakan Nesser. When I read, I’m so happy that I’m reading, and it’s not obviously easy, but I say “well done, you’re doing it.” With me, you can read a paragraph or a chapter and then you go on to the next and you don’t always remember it. So sometimes it doesn’t give you the positive feedback to continue on and see what shall develop itself.
I think my memory has got better but in many ways for it to get better it had to exercise itself a bit. I do give myself praise for it. I do have a diary and also I’ve got a notice board at home, and I place things down. It’s good that I’m doing it. Before, I used to think with my ego I suppose, “no I don’t need to do that, I can remember that myself.” But with me semi-accepting, “alas, my brain has been damaged,” I am placing things down on a regular basis.
12 Team effort
I think people with brain injuries need guidance and help, and doing it themselves is good, but it’s nice if you have a friend or family or something like that that keeps tabs on things. John helps me a little bit. It’s nice to have a bit of feedback and praise on the chores so you’re not so alone. It has to be more of a team effort.
My sister Ella is quite good at giving you more of a sense of doing things for yourself, rather than for Tom Dick or Harry. She says, “come on, do it for your own individual self.” I see her once a month. She’s very positive and very futuristic, she likes to see what possibly can be placed out.
My sister Betty is going to be doing my hair on Sunday. Betty’s very nice, I like her very much. I get involved in family reunions and when my brother Martin comes to London he stays at my place. With my mother and father, things are settled nicely. They’re both retired and they’re taking it much easier. It’s nice having a bit of time to themselves.13 St Peter's Square
With it being over twenty-one years now since I did receive the brain injury, it’s like I am a little bit reborn again. And I am spiritually sort of like placing myself out again. I don’t wish to go to the North Pole! I’d love to go to Moscow and see St Peter’s Square or whatever. I love the buildings there – they’re quite Gothic and quite individual. With the architecture and the structure and how you actually see them, it’s quite bewildering. It’s so nice to see that all these people are able to place up these elements. I’d love to actually see them and take photographs and see what was once upon a time, so to speak. It’s a scary thing to organise myself - I’d probably go with my partner John - but that’s something that I would within time like to have placed out upon me. There’s not a rush.
Look at the future and open many doors and see what you shall find.
© 'Nifty' / Headway East London (2016). All rights reserved
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