What’s Your Story?
Writing on the Wall Kuumba Imani Millennium Centre 4, Princes Road Liverpool L8 1TH Published by Writing on the Wall 2015 Š Remains with authors Design and layout by Rosa Murdoch ISBN: 978-1-910580-11-0 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publishers. 0151 703 0020 info@writingonthewall.org.uk www.writingonthewall.org.uk
Stroke Association in Manchester
What’s Your Story?
Contents Foreword Chris Mellor
i
June Artiguez
1
Muhammad & Khadija Ashraf
4
Joao Manuel Domingos
5
Natalie Halford
6
Geoff & Mary Heathcote
9
William Martin
10
Edith Murphy
11
Alexandra De Freitas Silva
13
Angela Slevin
14
Frank Smeeton
15
Luisa Spadaccini
17
Joan Elaine Walker
18
Helen Gilbertson
20
Strokes – A Blessing? Frank Smeeton
22
Ceramic Dreams Luisa Spadiccini
24
Laugh and the World Laughs with you June Artiguez
25
Remember Me Natalie Halford
26
Everybody Loves Somebody Angela Slevin
27
My Stroke William Martin
28
There’s a Stroke in my House Helen Gilbertson
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Louis had a Stroke Alexandra De Freitas Silva
38
To Care For Your Wife Geoff Heathcote
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I’ve got a Stroke Joan Walker
40
My Dream with a Stranger Joao Manuel Domingos
41
My First Stroke Edith Murphy
44
Pain on the Brain Natalie Halford
45
Previous History in Denmark Muhammad Ashraf
46
My Memory June Artiguez
48
Blood on my Badge Frank Smeeton
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Why Me? Helen Gilbertson
52
It’s Not All Doom and Gloom William Martin
54
Our Plight Christine Halford
56
Same Old Me Natalie Halford
57
My Story Mary Heathcote
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Foreword Hi, my name is Chris Mellor and I would like to welcome you to the stories, musings, poems and thoughts of the group of thrivers and survivors that it has been my privilege and joy to lead to the production of this book. I should perhaps start with a confession. I have no experience of writing for publication. I have never directed a group to write any published work. I was engaged as a theatre maker and musician to run a processed based performance project with a group of stroke survivors in North Manchester. At least that’s the assumption I made. Dangerous things; assumptions! On the first morning I soon discovered that my group of 15 or so people sitting politely and quietly around the large conference table were no wannabee actors. They were not there because they wanted to learn to sing together or improvise or devise drama. In fact, they had little or no idea what this project was even about and barely knew each other. What they all had in common however, was the force of nature that is Helen Gilbertson from the Stroke Association, who had encouraged, cajoled and taxied most of them there through the sheer force of her enthusiasm and her considerable logistics prowess. By the end of that first session I had learned that: • None of them were really interested in acting (there were two who like to sing) • Not everyone in the group had experienced a stroke but all their lives had been touched by it. • There was nearly sixty years between the oldest and youngest member • English was not the first language for one third of the i
team • My toolkit of session plans, drama stimuli and singing games was going to be of little or no use! So, we put aside acting workshops and show deadlines and just began to get to know each other. I had no idea where our process would lead, and certainly no thought as to how we might find a way to bring the project to suitable conclusion in our fixed timescale of ten sessions (which we did manage to sneakily extend a bit). Each week we would do some gentle warm ups, and OK, I admit it, a few drama games, and then we would take some time to tell stories or read others’ stories or look at pictures and objects from our life histories. Over the following weeks a bond formed that allowed the writers, talkers, listeners and thinkers in all of the group to emerge. Some of the resulting pieces were hand written, some sent in email, some recorded from conversations over tea around the big conference table. Each one has been read aloud to the group. Most have caused wonder, some giggles and many more have led to the best kind of tears. Most memorably when: • Frank, having beguiled us for weeks recounting his exploits in the war, stunned us with his piece about the loss of his wife. • Angela produced the beautiful recording of her husband singing Dean Martin’s ‘Everybody Loves Somebody’ that she played at his funeral • Joao shared his story of waiting for his father to pick him up from school when he was a child in Angola (tissues recommended). These represent only a small sample of what you will encounter as you explore this book. ii
I had originally planned to say a little about each member of the group, with maybe a thought about how or what they have survived on their journey to this point, but to be honest as I write this it seems that to do so would be a distraction; not because their struggles are unimportant but because they are not defined by them. While it is true that they have survived and are surviving many issues and barriers to living that seem daunting to one who has not experienced them, the group have always been clear that they do not want their work to leave anyone feeling low, and you won’t find a shred of self-pity in any of the pieces you are about to enjoy. I hope you will spend some time getting know the group from their photos and biographies before you delve in to the stories and poems they have produced from their life histories and imaginations. In the following few pages you will meet some of the most remarkable challenging and beautiful people I have encountered in my more than thirty years of running processed based arts projects. If this book has captured a tenth of the spirit of the group that embarked on this project you are in for a treat. Chris Mellor Project Director, Writing on the Wall
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June Rose Artiguez Manchester
I was born in the month of June and it was the nurse’s idea to name me after the month. My husband is Spanish, Mario, hence the surname of Artiguez. My maiden name was Russell-Counter. My Mum was called Bobby and my Dad Harry Russell. I found out later, that these were stage names. I was 15 before I found out that my surname was different. I didn’t know I until my teacher told me. I officially changed my name to Russell-Counter to have both names. Both parents were actors. They met whilst on stage in the Shakespeare Pub opposite the theatre. My Dad was playing piano and Mum was in Palace Theatre in panto; she went to the Shakespeare for the matinee. The pub is still there now. My husband lived in Southampton and worked as a lorry driver, he rang the Samaritans where I worked and spoke to 1
me. He asked me for dinner over the phone. As I was telling my friends about him, he unexpectedly walked past me at work. He took me out for lunch in the centre of Debenhams and then asked me for dinner that night. I had to eat my tea at home because my mother had already prepared something, and then had a second tea with Mario. I felt so sick afterwards. I met him every day for 3 days, having 2 dinners every day. Mum didn’t like him, I was in my mid 30’s and she was worried he was going to take me away from her. She was jealous. He then went back to Southampton and sent me a bouquet of flowers and a card, all in Spanish. I couldn’t bloody understand it. We wrote to each other. He got work to send him to Manchester so that he could see me. I got to see him every two weeks. Mum was still upset with me being with him, which made me closer with Mario, I was digging my heels in. One night it got too much, I called my friend who had a car to come over. She came in and I had packed my bags and my Mum was arguing with me not to leave. My friend took me to Manchester with my suitcase. As soon as I got in the car I burst into tears. She kept asking if I was sure. He opened the door, ‘I’ve come to live with you’, I said, and he took me in. I lived with him in that house for 6 years. Stroke has affected my memory, movement, and given me tiredness and fatigue. It has affected my walking; sometimes I have good days and some days are bad, which can last a few days. On bad days I can feel ill but I can’t put my finger on why. I have drop foot, so I have to be careful to the way I walk so I don’t fall. I have mood swings too. The memory loss is not just dates and times. I can be having a conversation and my mind just loses it and I say something
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silly. So I have to fight my mind to get the conversation back on track and I feel silly, so I have to explain I’m tired. The depression or low bit comes in as an illness which you do not get better from, so with some people they having nothing to look forward to. With being reserved you don’t want to explain it to people as you want to appear ‘normal’, you don’t want to show a weakness. It’s difficult to sit people down and talk to them about it because you can’t see it. I don’t let anything bother me though, don’t you worry!
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Muhammad and Khadija Ashraf
Born in Jullandhr, India now living in Kirkman, Manchester Mohammed - Stroke has affected my brain, making me forget sometimes certain things, the vision and hearing. My hope for the future is staying in the UK with my family. I have a great life, despite the stroke and don’t live in dreams. I’m very happy with my lovely family and wife.
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Joao Manuel Domingos Born in Angolia, I now live in Harpurhey, Manchester My stroke has affected me physically, emotionally and mentally. My communication has been affected, I have memory loss, difficulty concentrating, reading and writing, orientation and speaking. My hopes for the future are to go back to normal, to do everything I used to do and not rely on other people. To learn what my limitations are, just carry on living every day. Being part of the group has helped me understand what stroke is all about, now I can realise that I can be more open and increase my confidence and motivation. I’d like to be able to connect with people from my community. I feel there’s a language barrier which is even more difficult when you’ve had a stroke. I’d be interested in volunteering and working with an African community.
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Natalie Halford Born at St Mary's, Manchester, lives in Manchester I was first affected by stroke at the age of 12 when my Grandad had a TIA at the age of 65 and subsequently suffered another one three months later. This was the start of the decline of his health which led to him to develop multi infarct dementia as a result of a continuation of TIA's and seizures over the years, up until he passed away in 2010. Whilst at college in 2002 my Nana (on the opposite side of the family), had a stroke in hospital which left her with foot drop and a dense arm, or 'Strokey' arm, as we used to refer to it. Over the years when studying for my Law Degree, then later the Legal Practice Course, I spent much of my time helping my Grandparents both in different ways. I helped my Nana do her cleaning and shopping whilst she struggled with the physical effects of stroke, whilst helping my Grandad and Nana cope with the hidden side of stroke as a result of the decline in his memory. This later led to the inability to be able to go out alone or left in the house without supervision. In 2007, I suddenly faced my own battles having an abrupt onset of a chronic pain condition at work which has resulted in my own physical disability. As much as I found the new daily challenges of life difficult, I will always be grateful for the fact that it allowed me to spend a lot more quality time with my grandparents, which I otherwise would have spent at work.
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Then came the phone call which would have the most dramatic effect on my life. I was informed that my Mum had had an acute stroke at work in 2012. Her stroke extended over the next three days leaving her paralysed down her dominant right hand side, including affecting her face and speech. Having my own disability and being a wheelchair user made it much more difficult to care for my Mum the way she had for me when I became ill. She had gone from being my main carer to needing care herself. However, over the next 12 months she battled through and regained her independence by regaining movement in both her limbs and face which improved her speech and resulting aphasia. She still struggles with chronic fatigue and has a dense right side which mainly affects her arm, resulting in many tasks she cannot or finds difficult to do, but thankfully she was able to return to work. In the years after my illness I lost my confidence as I was no longer a person, but instead I was defined as a 'wheelchair' or a 'disabled' person who could no longer think for herself. Things changed when my Mum was referred to the Stroke Association for help and support. Being with my Mum, who walks unaided, and finding myself in a wheelchair, people automatically assume I'm the stroke survivor and are shocked to find out I'm not and I'm actually my Mums carer! Being surrounded by disabled people without being defined or judged helped improve my confidence and I now put that to good use as a volunteer and an ambassador for the Stroke Association. If one good thing came out of my Mums stroke it's that it gave me back a purpose in life to help others who 7
are trying to come to terms with their own disabilities and the difficulties they face every day in life. When I'm there to help, I'm respected in my own right as a person and one who is aware of the risks surrounding stroke and my empathy towards those who find themselves in similar situations to myself. I hope that this will transpire to others in life who don't see disabled people in the same light but define them based on what their bodies won't allow them to accomplish. In the future I hope to continue to promote stroke awareness and prevent others from having to go through what me and my family have gone through over the years. No matter how big or small your affects from stroke are, there's still only one conclusion - that stroke is cruel and the part of your brain that was affected will remain dead forever.
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Geoff & Mary Heathcote Born in Miles Platting & Jersey C.I. Now living in Failsworth, Manchester. When Mary had a stroke on 21st of May 2011, Geoff took early retirement and became Mary’s full time carer. The stroke affected her down her left side. She now has weakness in her left leg and needs a three-wheel walker to get about; when we go out around town or for longer walks we use a wheelchair. She also has no grip with her left hand, and memory and communication difficulties too. It affected Geoff in that he had to take over household chores and learn to be a carer to Mary. We hope Mary carries on improving, albeit slowly. We both enjoy attending various stroke cafes and other events. Geoff became a volunteer driver, then an ambassador with the Stroke Association. We both enjoy going on holiday, especially home to Jersey and also Gibraltar and Spain. Now we hope to visit more places around Britain as there are lots of places we haven’t been to yet. We’re hoping to have lots more time to do this.
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William Martin Born in Scunthorpe, I now live in West Didsbury I had a stroke on 27.05.2015. Two days earlier I had been walking in Malham, four days earlier I had completed a 5k run. I had just returned from Lake Garda. I had completed the Manchester 10k run two weeks earlier. I had just had my granola for breakfast. I stood up to go to talk and collapsed. My partner found me immediately. She rang 999, first response arrived in 2 minutes. An ambulance in 4 minutes. I was in Salford Royal A&E within 20 minutes. I have had a full stroke, not a mini stroke or a minor stroke. But superficially I look fine. People can’t see what has happened in my scrambled brain. I have actually found my experience fascinating. I have been very lucky to take the voyage through my own brain, piecing it back together. But I would not want others to think that Stroke is fun! I do have deficits; multi-tasking, confusion, behavioural difficulties, musical perception, focus, problem solving and no emotions. But I have some sense of humour and that has helped me cope. 10
Edith Murphy Born in Durham, now lives in Chorlton, Edgehill I love Manchester. I moved for a better employment position when I was younger. I worked for Marks & Spencer for twelve and a half years in gents tailoring in Durham. I moved to Manchester in my early 30s. I was a Daddy’s girl, an only child. Dad motivated me to work and develop my career. When I first moved to Manchester I used to stay in hotels. Then I moved to a house five days a week then I went back at weekends. My husband was a Manager for Dunlop. He would travel to Newcastle, and would stay with my family at the weekend. With my Stroke, I do try to keep going. Sometimes you have good days and bad days. I have had 2 strokes. After the second one, I wanted to get going, but I stuck it out, meeting people and having help. The Trafford Stroke Association were excellent, it made me become determined to keep going. I used to travel abroad, but I’m happy in my little apartment now, I feel safe. It was where me and my husband lived before he passed away to Cancer. I love my apartment. As long as I can look after myself. If I need assistance, I’ll get it, but in my own house.
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You can’t do things the same, I try, but when the day comes when I can’t, I’ll get someone in. You’re willing, but your body won’t let you. Keep going and carry on. It’s an awful sensation when you have a stroke. It affected my face and my hearing. I think ‘Thank God’ because there is always someone worse off. The first stroke was 3 years ago. The second stroke was on 27 December 2014. I enjoyed doing group work with the Stroke Association. I loved the exercises, keeps my energy up. Shame to have missed some sessions but sometimes I just can’t.
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Alexandra De Freitas Silva Born in Cape Verde, now lives in Manchester I came to the UK last year, in 2014. My 15 year old daughter, Regina, lives with my parents in Brazil to go to school. I am working in the UK to earn money for her. My great wish is that my daughter can come to the UK so we can live together. I didn’t have a stroke but I came to support a friend. I’m quite happy meeting all these fantastic people and have learned a lot with them over the past few weeks.
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Angela Slevin Born in Rochdale, now lives in Blackley The stroke has caused weakness of my left side and my grip is gone. I had a T/A (mini-stroke) in 2007, and a stroke in 2008. I didn’t know anything about stroke before, I was with my husband when the first T/A hit. My husband, Peter Slevin, was a musician. He was in a skiffle band with his brothers, they played in Bernard Manning’s club. I am friends with his sister, I met him through her. We met when I was 37/38 and we were together for 15 years before I lost him to Cancer. I am close with Peter’s son, Mark. He looks after me, he promised his Dad. I am positive about my life, there is no point moping. I go to Stroke Cafés. Meeting new people gets you out of the house. I enjoyed these groups with WoW, something different. I’ve never done writing or performing before, but there is a first time for everything. I’m a very positive person, try not to let anything get me down. I don’t give in; what’s the point? How can you let that go on? I’ve always been positive.
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Frank Smeeton
Born in Harpurhey, Manchester now lives in New Moston, Manchester I am Manchester through and through; always lived in Manchester, except when I travelled with the Navy. I was conscripted to the Navy at the age of eighteen and a half and spent three and a half years there, until I was 21. I met my wife in the 1940’s, we went to the same church. I was fifteen and she was fourteen. We were childhood sweethearts; she was in Girl Guides, I was in Scouts. My father was a butcher, I ended up working in the same place as her father-in-law. There were so many connections between us and the family. Sounds like we were destined to be together, doesn’t it? I went to an ordinary Elementary, left with no qualifications. I then went to College and became Head Teacher of a School. I enjoyed teaching geography and PE. 15
My wife looked after our three children. She was a domestic science teacher. I am full of admiration, she looked after all of us and then in the evenings went to night school. I could never have done what she did. We have three daughters, three grandchildren, three great grandchildren and one great, great granddaughter. Stroke has affected my voice, speech, memory and slightly my right arm, but it’s not too bad now. All I hope from life is to live as normally as possible and have a good quality of life. I haven’t been affected as badly as I first thought, I have had lots of help from family and friends.
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Luisa Spadaccini Luisa came to England from Brazil via America. It took some time to get to know her as her Portuguese and Italian were much stronger than her English. Luckily another three group members spoke Portuguese and translated key information as we went along. Even so, I worried that she did not feel part of the group and engaged with the work. Then one day she produced, in English the story printed here and told us all of how she stopped producing any art or ceramics at all the day her daughter left Brazil to go to Italy. She simply closed her door and left everything gong to America and then to England. During this time she also had her stroke and now lives here, largely without social life or family. It was a very moving story and I felt that by telling it she had crossed a barrier and fully joined the group. It was particularly sad that soon after this she stopped coming and has not returned since. However, we have since discovered that the reason she stopped attending was because she decided to leave England and has gone to Italy to be with her daughter. We wish her all the best and hope she approves of us including her story in this collection.
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Joan Elaine Walker Born in Jamaica now lives in Miles Platting, Manchester After the stroke I had to learn how to write with my left hand although I’m right handed. I have to do my hair with my left hand, everything has to be done differently. There was a 50/50 chance that I would live, but I’m here. My right shoulder and right leg, my memory and speech are affected. It feels like a lifetime ago. My Husband stuck with me. I met my husband whilst out dancing. I was 25/26. My husband is from London and has a small family compared to me. Both my parents are from Jamaica, I have one brother and six sisters. I was the second youngest. I came to England with two of my sisters when I was ten years old to live with my parents who were already here for work. Whilst in Jamaica we had lived with my Auntie who brought us up. My parents were here for work, they were working in factories. We have stayed ever since, living in Manchester. I have family all over the world, Jamaica, Canada, England, America, Dubai. I’ve even got a grandniece! I went to see my Dad off to Jamaica the other week. He found out he had prostate cancer and wanted to be with the 18
family and be back home. He’s eighty one. We all came together for my Dad, we’re close for a big family. You’ve got to persevere with life. I think I’m positive about it. I’m busy - I go to the sauna, Church, Keep Fit and the Stroke Group. I make friends through groups. I would like to be able to do things I used to do, like swimming. Hopefully I’ll get a little better each day. I enjoyed coming to the Writing on the Wall course, I get on with everybody.
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Helen Gilbertson Born in St. Mary’s Hospital Manchester and now lives in Gorton Manchester My Mum had a stroke when I was 14 years of age. Back then I was told what my parents wanted me to know, also stroke wasn’t known like it is now, so I was very ignorant knowing how it would and did affect my Mum. My father wasn’t a well man either, so he became Mum and Dad overnight. Mum made a full recovery as she has that determined spirit in her. I now work as a Community Stroke Coordinator in North, South and Central Manchester with the most wonderful Stroke Survivors and their carers. We offer emotional and practical support to help them live and cope with ‘Life After a Stroke’. They inspire me each and every day. A world without strokes would be nice, however that’s a long way off (and I would be out of a job), but I wish to be able to carry on doing what I do and helping those that need it most. As previous Miss World’s say ‘I would like to live in a world with World Peace’.
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Strokes – A Blessing? December 1998 was the worst moment in our marriage as Irene, my wife, was diagnosed with lung cancer. She was seventy-four years of age and we had been married for fiftytwo years. There were no Christmas celebrations of any kind we were in severe shock. In the coming months we spent a lot of time visiting hospitals, such as Ancoats, Wythenshawe and North Manchester General (Oncology Wards). Surprisingly, she received very little treatment other than numerous examinations. She was also a diabetic with a touch of pleurisy. As if she wasn’t suffering enough, the diagnosis of cancer was devastating. Before all this she had a stroke. A doctor was called in who prescribed half an aspirin daily and said she would be alright. Within a short time she had a second stroke which robbed her of her speech completely. Sometime later, a further stroke paralysed one side of her body. A senior nurse took me to one side and told me she was dying. When I returned to the ward Irene pointed to my eyes and knew that I had been crying. That was on a Tuesday and on the following Saturday Irene was in dreadful pain and was thrashing about the bed in agony. On the Sunday she had calmed down and died the following day, Easter Monday, with her family around her. I have no medical knowledge but am convinced, rightly or wrongly, that the strokes suffered by Irene brought about an earlier death, and that she didn’t have to suffer months of slowly dying from cancer. She never complained or created a fuss. Several people agreed that she was a lovely lady and would be very much missed.
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Fifteen years later in 2015, I too suffered a stroke, fortunately not as severe as Irene, and with continuous treatment I am still surviving. Frank Smeeton
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Ceramic Dreams Last night I was dreaming of doing pottery and suddenly I woke up and remembered that I was a ceramicist for twentyfive years. I worked with my hands and with a wheel. I made enamel, dishes, bowls, cups, vases and panels of tiles. I made sculptures in clay and worked day and night, and in my mind I was always thinking about ceramics... How did I forget so important a time of my life? ...and I left everything, suddenly, after my younger daughter Laura left Rio to go and live in Firenze. I was sad, feeling empty like the trunk of a tree! Luisa Spadaccini
Luisa Spadaccini 24
Laugh And The World Laughs With You I have been told STROKE is a life changing experience. To others who are paralysed I can well understand. But suppose you, like myself, are one of the very fortunate people who have their faculties i.e. – Arms, legs, speech etc. So what on God’s earth is wrong with you? You have been told what a T.I.A is, but how can I explain to anyone who looks at me how I really feel! For instance, when you walk, one can be on one's feet one moment, and on the floor the next. I found out that this is called ‘drop foot’. You can be enjoying a conversation with friends, and next turn into a blubbering idiot, completely losing the plot. Forgetting names and dates is as standard. If I've left anything out, please try to understand. You see, T.I.A’s are hidden and only if one explains, they perhaps can see you in a different light. Now suppose you don’t want to tell? Your other option is to fight. One might ask, does it work? Before we answer that, what is the other alternative; to give in? No! The fight is very, very hard. First, let’s try, when walking, using concentration at all times. Yes, the foot will still drop, but are you ready? Next - conversation. When you get tired, make excuses to leave. I believe that is when one can make mistakes. Forgetting names - just don’t use them unless you are really sure. Dates - now that for me is the most difficult, and I’m still working on it. Please be aware this is not a cure to end all cures, but never give in to this without a good reason. And in finishing, remember laugh and the world laughs with you, cry and you cry alone… June Artiguez 25
Remember Me The lights are on but no one's there I've lots of news I want to share It's not much good, he won't remember He thinks it's June, or even December? When I think of his life before his strokes His fishing, his whistle, and even his jokes Now he'll try and sing occasionally But names are a blank, not even me! So, at night I go to bed and cry As I think to myself and wonder why. I wish I could turn back the clocks you see Just so that he ..... could remember me. Natalie Halford
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Everybody Loves Somebody This is a CD that Peter, my late husband, recorded in May 1998. When I am feeling low and lonely I put the CD on and think of all the good times that we had. We would go for walks in Heaton Park, Hollingworth Lake, and go on holidays to North Wales or Southport. One holiday we had in Southport we went for a game of golf and I got a hole in one! We would love walking along the beach. Peter was ill with prostate cancer, and secondary on the bones. He battled with cancer from December 2008 till May 2011, Peter died on 25 May 2011. At Peter’s funeral we played ‘Everybody Loves Somebody’. Afterwards, family and friends asked for a copy of Peter’s CD. Angela Slevin
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My Stroke 1. 27th May 2015 Wednesday 27th May started like most workdays. I ironed a shirt, had a shower, stood on the scales, got dressed and went downstairs for breakfast. I left my work bag in the hallway and walked through the living room to the kitchen at the back. I was sat down just chewing my last mouthful of granola. I decided I’d go and grab my phone from my bag. I tried to stand up but I’d lost all my strength and immediately slumped to the floor with a bang. This was weird, what was going on? I hardly had time to think. Before I knew it I had started crawling through the living room towards my bag. I noticed that I was sweating a lot. But it had never crossed my mind that something was wrong. I wasn’t in any pain. If I just carried on it would go way, like cramp or indigestion. My partner was running late for work, so she was still upstairs in the house. She’d heard a bang when I’d hit the floor and thought that I’d done something daft. She came downstairs and found me in the living room. Apparently the left side of my face had drooped and I had granola and milk dribbling out of the side of my mouth. My left side was weak, my speech was slurred and I was sweating. But I couldn’t see any of this. My partner rang an ambulance straight away. She must have guessed what was happening. But neither of us mentioned the word stroke. It certainly never crossed my mind. I was far too young. These kind of things don’t happen to me. I was as fit as a fiddle. I said, ‘don’t be daft we don’t need an ambulance I’m fine ‘. I was self-conscious about all the fuss. What a palaver, what would the neighbours say? 28
First response arrived within one minute, the ambulance only two minutes later. I was given something by the paramedics. I surrendered to the drama thinking, ‘well better safe than sorry’. The roads weren’t busy and we were in A&E within twenty minutes of my collapse. We watch casualty religiously every Saturday when it’s on. It was my first ever time in an ambulance, but I wasn’t really in the right frame of mind to take in the experience. I was checked out by a young doctor. You know you are getting old when doctors and footballers are actually younger than you. ‘Grip my hand’ ‘touch your nose’ ‘touch my finger’. A nurse asked my weight and I proudly stated 72.5 kilos. I was medicated some more and sent for a CT scan. I remember the taste in my throat and then the sensation in my nether regions, when the contrast solution was injected. I returned to A&E for a while but was soon up in a ward. A stroke ward, full of old people. I was the youngest in there by 25 years or more. For each minute in which stroke remains untreated, 1.9 million neurons, 14 billion synapses, and 12 km (7.5 miles) of myelinated fibres are destroyed. Compared with the normal rate of neuron loss in brain aging, the ischemic brain ages 3.6 years each hour without treatment. I was so lucky to be found so quickly and treated so quickly, that someone had recognized the signs and had the foresight to call 999. If my partner had been on time for work, who knows? What if the roads had been busy? I was in Manchester, which outside of London is the only area with dedicated Stroke units. What if I lived in Leeds or Liverpool or some rural community? A postcode lottery. My left side quickly recovered. My face was symmetrical. I could speak and remained articulate. By 10:30 am, from the outside there was nothing to differentiate me from the person 29
who went to bed on Tuesday 26th May. But stroke is like an iceberg, there’s much more below the surface. My mind was racing but I was also relaxed. I was pretty confused but also quite lucid. It seems as though I was experiencing everything all at once. The snowstorm had been shaken and it wasn’t settling quickly. I had envisaged going back to work later that day but had underestimated the fallout. The gravity of the situation was slow to dawn on me. I had sustained irreversible and permanent brain tissue damage. This was not like a bruise that would pass in time. Brain cells do not grow back. I did wonder whether I might have some memory loss. But how would I know what I’d forgotten? I wouldn’t remember that they had gone missing because I would not remember that I had them in the first place. Or would it feel like déjà vu, like something was missing that I could not put my finger on. And what would it feel like if I then remembered something that I had forgotten. It was all rather amusing. Wouldn’t life be so simple if the brain only held memories? I would only just have to deal with a handful of memories that had gone missing. The following day it was confirmed that I’d had a stroke, which still came as a bit of a surprise. Even though I already knew as much, it’s not quite until it’s fully confirmed that it entirely registers. I was told that I had had a blood clot in an artery on the right side of my brain; an ischaemic stroke. The imaging identified a narrowing in the artery, which was the probable cause. I wondered whether this was a ticking time bomb, waiting to go off again and again. And next time it would be much worse! There was not much more that they could do for me medically. I was still confused, but well enough to pass some basic cognitive tests. I’d definitely mistaken the picture of a lion for 30
a tiger. I was asked to walk up and down some stairs. I did it with gusto, I was showboating, very proud of myself; yes I can walk up the stairs. I thought I had escaped entirely unscathed. Everything seemed present and correct, albeit a bit surreal. I certainly didn’t feel ill. I was delirious and euphoric. In time I thought it would settle and that I’d be back to normal. I didn’t qualify for speech therapy, physiotherapy or occupational therapy. I was ready to go home within only 36 hours of arriving. I waited for another few hours for my medication and was eventually allowed home with only my discharge notes for reading material. I was advised that my outpatient appointment would be about nine weeks later. That was it. There were no do’s and don’ts, no nutritional advice, no information resources, no what to do next. It seemed odd that so much money had been spent on my medical care but so little consideration had gone into my recovery. I was to discover that neuroplasticity, the ability of the brain to develop new neural networks to carry out tasks disrupted by the death of brain tissue, is most pronounced during the early stages. So that was it, the clock was ticking once again to maximise my recovery as quickly as possible. 2. Home When I got home I was a bit wobbly for a couple of days. I would have headaches from time to time and tingles in my arm and leg. Every little twinge was questioned and put down to the medication or the swelling on the brain. It takes four to eight weeks for the swelling to die down, so I’d have to wait at least that long to obtain more clarity on my residual deficits. In time I would realise that I had not escaped unscathed. I continued to be confused and befuddled. Obsessive and busy. 31
Very direct but also very calm and at ease with myself and my situation. Blissed out. When a part of your brain dies forever, it’s not quite as you would expect. Every stroke is different and unique. Mine was a right side temporal lobe infarction, but even that level of precision does not guarantee any repeatability of effects. But even so, it seemed that I’d had a relatively unique experience that few stroke survivors could come close to. I had grown up to question society and its values, its double standards and its self-importance. I was conceited and vain. Having a Stroke heightened my questioning. I had much greater clarity of thought, or so I thought. You experience your mind as a single, seamless entity. You rarely notice it and what it’s doing in the background. You take it for granted. It gathers information and experiences and weaves them to create ‘you’ and how ‘you’ experience the world and ‘them’. In the blink of an eye I lost 42 years of emotional baggage, social conditioning & anxiety, doubts and regrets. Life and society initially seemed futile, trivial, preposterous and absurd. When I went for a walk I saw people driving around in little metal boxes with four rubber circles on each corner. It seemed so unnatural; contrived. The constituent parts of my mind had become disaggregated. The conductor of the orchestra had disappeared. The violins sounded like a strangled cat and all the instruments were out of time. The percussion section had gone off to the toilet. At the end a unicorn would hit a triangle. A cacophony but hilarious. I had become robotic, relying upon systems and processes. I likened myself to being on the autistic spectrum. I could only deal with facts and efficiency. I was intellectually inflexible.
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Making a cup of tea was an amusing challenge; remembering to do it all in the right order, but I passed in the end. And putting on a duvet cover using the inside out method; I passed at the second attempt. I was starting to get over confident, so it came as a bit of a rude awakening when I failed the Tupperware test. The Tupperware boxes were supposed to nest inside one another like Russian dolls. Easy, I thought. I sealed the lid on the largest box first. Whilst I was attempting to seal the lid on the second largest box the penny dropped. Everything seemed familiar but also not at all the same. The internet helped me describe some of my experiences as dissociation. Extending from a sense of mild detachment from immediate surroundings to more severe detachment from physical and emotional experience. I also discovered ‘Executive dysfunction’. A term for the range of cognitive, emotional and behavioural difficulties often resulting from frontal lobe damage, including: • • • • • • • • • • • • • •
Planning and organisation Flexible thinking Monitoring performance Multi-tasking Solving unusual problems Self-awareness Learning rules Social behaviour Making decisions Motivation Initiating appropriate behaviour Inhibiting inappropriate behaviour Controlling emotions Concentrating and taking in information 33
Having a label and recognising some aspects of my experience helped me to come to terms with it. Some people told me to slow down and take it easy. But I had no choice. My brain was in charge, it was deciding what to do next. I didn’t have a handbrake. In many respects the analysis is futile. It is what it is. Some people might even say ‘You are over analysing this’. I might say ‘You are under analysing this and everything…. but your time will come’ It’s all really rather funny to me. It might take some time for my mind to become comfortable and settled in its new surroundings. But I’m confident that one day harmony will be re-established. It can be frustrating at times, being unable to explain the experience to people, so that they can marvel at the craziness of the human brain and share the experience with me. But even if they can’t or don’t care to understand, I can feel a little smug at having gained an appreciation for the working of the human brain that perhaps very few are fortunate to get even close to. William Martin
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There’s A Stroke In My House I was fourteen and one day Mum wasn’t there. Dad, who was ill himself (through smoking and working with asbestos), was crying. Dad never cried, well not that I ever saw. We visited Mum and well, she wasn’t my Mum. She couldn’t talk, walk, sit up, dribbled, but that look she gave me was enough. I came home from school and Dad was trying to do Mum’s jobs in the house, but it wasn’t the same. The house was weird, just weird. And Ginny the cat wasn’t there. Dad told me it was him that caused Mum’s ‘Stroke’ so he was put to sleep. What’s a ‘Stroke’ I asked? I didn’t really get an answer, just that Mum wasn’t well but the Doctors are helping her. Over a period of time Mum made a full recovery. Well, why wouldn’t she; She’s a determined bugger. Mum was wearing trousers, never had I seen my Mum in trousers! Life carried on as ‘normal’, or whatever that is, was, will, could be. I started carrying the large oxygen cylinders upstairs for my Dad, which is what Mum used to do to help him breathe. I turned eighteen in October and Dad died two months later, that December. When I was told about Dad dying I had just come back from having a mole removal on my arm (the strange things you remember), and when I walked in all the curtains were closed in the living room and front room. Jean, my sister, was crying. Mum said, ‘By the way your Dad died this morning, how is your arm?’ I looked at Mum and said ‘What?! Sod my arm’. I was asked if I wanted to see him in the Chapel of Rest, but that wasn’t my Dad so I didn’t go.
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At the funeral I couldn’t look at the coffin. Whilst stood with my college friends in the Church who came to support me, we were laughing. The Priest came over and said ‘Helen your Mum needs you!’ No one ever asked me if I was OK or did I need anything? I’d lost my Dad, I’d only known him for 18 years and a lot of the earlier years she was working away and then became ill. Once, when I was younger, he went away working with a beard, a moustache, big thick hair and Denis Healy eyebrows, (whoever he was, but everyone said they looked likes his), behind his thick rimmed black glasses. When he came back I didn’t know him, his hair was short, no beard and moustache, even though he called me ‘Princess it’s your Dad.’ I hid behind Mum. Apparently it took 4 days for me to ‘remember, and accept him as my Dad’. My image of my Dad is him sat in his chair with his arm over the side with his BIG Cheesy Cheshire grin. He takes pride and place on my ‘hall of fame’ on my stairs. Anyway back to stroke. 17 years later I started to work for the Stroke Association with not another thought about my Mum, Strokes and how they ‘actually’ affected me and my family. Now I know what a Stroke is and how goddamn devastating this thing called ‘Stroke’ actually is, and how it not only takes hold of the person it decided to inflict upon, but their family and all around them, I do my uppermost to help them in whatever way I can. When it happened to my Mum there was no one like me around to tell me what is was, why, how, why and again! And explain that no, it wasn’t Ginny the cats fault after all. So now, with the best of my ability, I try to help, inform, support, guide, listen to, give tissues to, laugh, smile and empathise with 36
them, but also let them know they are not alone, there is Life After Stroke and there is hope! Stroke Survivors are Survivors of Stroke; live life to the full, each and every day. Helen Gilbertson
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Louis Had A Stroke? Louis had a stroke? It has to be a joke. He is young and healthy, That only happens to the elderly... And I carried on my life, Just thinking he is alive. People can be so mean, That they invent anything. BUT it really was true, How life could be so cruel. One day I was passing by, And stopped to say hi. Oh GOD I felt so bad, When I realized his left side was almost dead, I wanted to cry, My friend had almost died. But I didn't, he had survived, Right now he can't play football, But at least he can hold the ball. One day he will get better, and play with Manchester Alexandra De Freitas Silva
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To Care For Your Wife They asked what it’s like To care for your wife I said it’s what I like to do I knew she’d come through If it had hit me too As we look after each other anyway We live day to day ‘cos it’s the only way To keep from feeling blue And with friends like you Who’ll help us through Our life’s worth living, it’s true We thank the stroke café For giving us back our hope and positivity too Geoff Heathcote
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I’ve Got A Stroke I’ve got a stroke………….. You can tell I’ve got a stroke……….. I’ve got a stroke ……….. 50/50 chance I’m alive No point in complaining I’m a survivor I’m a survivor Joan Walker
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My Dream With A Stranger My biggest ambition was to know this one very important person in my life, but I don’t know if I loved or hated this person. I am biologically connected to this person, he is the reason of my existence as a man or a little boy dreaming of him on his way to school. Since I was young, I realised I was different from other kids my age. I don’t know why I had this feeling still inside me, until one day I start asking questions. I remember the day. I was happy for a short period of time because some of the answers to my questions filled that strange emptiness inside me. This day was the first day of school. I was excited because finally I could be like my older sisters. From that moment I wasn’t going to be left at home watching them going to school. My Mum organised my backpack with everything I needed and my lunch inside. I was well dressed in my school uniform. When I walked with my Mum and my sisters I felt like a soldier marching to accomplish something important. I looked around to make sure I kept all the important information my Mum had explained to me, making sure she knew I could get to my first lesson safely. ‘Don’t talk to strange adults, only cross the road when the signal is green, don’t run on the way back, don’t fight with yours colleagues’. I replied, yes Mum in Portuguese, ‘Sim Mae’. When I noticed so many kids going with their fathers, I asked my Mum, ‘Where is my father?’ And she said that he would be there. I was so happy because now I will be able to see that important someone in my life. But when we arrived at school the person I was looking for wasn’t there. So I thought, the next day, today is going to be the day I finally will have a chance to cross the road holding his hand. But once 41
again he wasn’t there. I started thinking, maybe it was because I was late. So, it’ll be the next day I will find the man there waiting to take me to the school. I never saw him. As a kid I was trying to find excuses because I really wanted for one day, one day only, to cross the road with my father. In four years that never happened. Every day on my way to school my only desire was to see my father around the corner waiting for me. Just to take me home at least once. I would look around every corner and sometimes change directions thinking, maybe he’s waiting on another corner. Until I realised, maybe my father doesn’t like walking me to school, or he was working every day, and one day he will come to pick me up and take me to school like the other kids. Sometimes I thought, maybe it is because I was behaving badly, so I started being a good boy, even accepting to obey my sisters orders. But once again, nothing changed. My Mum never gave me a straight answer about him. I noticed that every time I was talking about my Father, my Mum would avoid the conversation. I could feel the pain and anger in her eyes, but I was just a kid and some things in life we only understand as an adult. Sometimes I found my Mum crying with a white dress and I’d ask my sister why Mum loved that white dress so much. She explained to me that it is a wedding dress, so I thought I could help my mother because I knew marriage happened between two people. With my little experience of marriage, I said ‘Mum don’t cry, I can marry you!’ She looks at me and gently laughed ‘Ta Bom’, meaning alright. As the time passed I realised my Mum was a single parent and my father never appeared around the corner. I stopped looking for him to help me cross the road on the way to school, college or university because I learnt to cross by myself, keeping my mother words ‘Aprenda que eu nao duro para sempre’ - ‘learning because I will not be here forever’. I 42
don’t know if one day my father will look for me, but one thing I do know is that he’s not going to find me on the way to school because I learnt how to cross the road by myself. I am grateful for my Mother never giving up, dreaming about my education. An important thing I have accomplished was graduating from Huddersfield University. I remember my first teacher (Mum) taking me to school while I was dreaming for a stranger. One thing me and my Mum had in common was a dream with a stranger. Mum wanted to marry him and I want to cross the road with him on the way to school, but all of that was just a dream because Mum never married, and I never crossed the road with my father. A Dream is just a Dream!!! Joao Manuel Domingos
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My First Stroke 24 hours ago I felt fine, then my legs were weak, left side, my arm, face, speech. In my mind – what’s happening to me? I was taken to Stepping Hill Hospital. 10 days in care when I came home. One afternoon a lady phoned and asked if she could visit me. ‘Of course,’ I said. It was Helen from the Stroke Association. I was so grateful of our talk, it helped me a lot. She was very caring. I did 6 weeks in Gorton and I loved it; excellent, lovely people. December 27th Another Stroke. This time I went to the Trafford General. Excellent. After three days I have to try and walk. The speech therapy and the exercises were very good. 10 days later, I wrote a thank-you letter. I got a reply back, did I mind if they published it? I was delighted. I don’t give up, I KEEP GOING! Edith Murphy
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Pain On The brain Seven years ago I got pains in my legs Messages from my brain simply mislead The pain so horrendous it makes me cry Doctors are baffled, they wonder why? So I wake and take each day as it comes Hoping one day I'll be able to run For now my wheelchair gets me about I love my chair and would be lost without I face many obstacles at every turn There's always a step, people never learn I just wish I would be treated the same As I was before I got all this pain Life's taught me a lesson which will remain Disabled or not we are all the same. Natalie Halford
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Previous History In Denmark I arrived in Denmark in 1965 with good health albeit a different job. Last job before RTD, a coach driver in this time. One day an incident happened, I crashed my right arm. For a long time, I had to have medical treatment, my arm had to be plastered. The pain was too much, my shoulder froze, I still have pain and I can’t lift things or push and pull. After the results came, the doctor’s report said I could not drive a big vehicle with passengers anymore, but I can use personal car. Marriage status 1974. My marriage was arranged in Pakistan by my parents. I was living in Denmark when they arranged it. They informed to me to travel to Pakistan for a wedding and two weeks’ vacation. After two years, in 1976, we had our son Billy, and our second son, Bobby in 1978. Sonya and Assia were also born. They are living in Manchester, all married through arranged marriages. I have ten grandchildren. My children and grandchildren are Danish nationals. We moved from Denmark in 1997, that year was Lady Diana’s incident, very sad.
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Friday 24 January 1974, Khadija fell down the stairs and broke her back bone. It was a big test for me because her condition was very serious and dangerous. She was plastered and laid on wooden bed because she had to be on a hard surface. The x-ray reported that she had a bone fracture, there was little hope for a month and a half. After six weeks I came back to Denmark on my own for treatment in Pakistan. My Mother took care of her and the doctor visited at home. When they removed the plaster she stayed on her feet with support. When she became well enough she came to Denmark by Air France. I picked her up from airport, it was the first time she had travel by air. From all trouble, we are living, thank God. Muhammad Ashraf
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My Memory In the choir we used to travel to sing. In the interval I would sing off the paper as a soloist. I wouldn’t need paper, I would sing all the time. All of a sudden my mind went blank. Not like me at all. After this happening a few times I decided to look into it; the memory loss, falling and my difficulty walking. Now I have to read the words. I wouldn’t have noticed it without singing. I had an active mind, but this was something different. It frightened me and worried me so I had to find out more. There was nothing physical, it was all in my mind. Only after one month did they tell me what it was; the doctors told me I was having lots of TIA’s. I didn’t even know what a stroke was. This isn’t me, I am always on the go. I had to learn to do everything the same but in a new way. My husband didn’t understand, he had a heart bypass, diabetes and angina. He liked me to do things for him. It helped because it kept me going and staying in my usual routine. Sometimes I get so tired, but there’s not time to be tired. Sometimes you just have to sleep. On the way back from that performance I had wanted to sit on my own. I’ll never forgot that moment. I just knew that I was never going to be able to sing without the words in front of me. It was okay in a group but never again on my own. That always really upset me. I felt ashamed, nobody else knew what I was going through. I only told Mario, I had nobody else to ask, I kept it all inward. I felt like I was losing and I don’t like losing. I don’t like giving up. June Artiguez 48
Blood On My Badge Have you ever been scared to death? Really scared? Well I have. Reveille at 4.30am. I am dressed and go straight to action stations for we were in range of Japanese suicide bombers. No hot food for us today as the galley fires would be in use (not lit) today. My name is Frank Smeeton. I am a Telegraphist/Air Gunner aged 21 with 848 Squadron on board H.M.S. Formidable (Aircraft Carrier) attached to the British Pacific Fleet. Today I received my promotion to Petty Officer, wearing my new badge on my sleeve. The bombers and the fighters took off for bombing raids on Japanese air fields and against shipping. Just before lunch we received a red alert and almost immediately every gun on the ship opened fire on the approaching suicide bombers. The noise of the barrage was unimaginably deafening – I never experienced anything like it before. A suicide bomber hit the ship amidships, opposite the ‘island’. The noise of the exploding bomb and aeroplanes added to the unreality of the situation. I was on duty in the Operations Room, a storey above the flight deck. Smoke and flames swept into the room causing a choking sensation and smarting eyes. I thought I was going to burn to death in this small room, and in a blind panic I ran to 49
escape the fire, in actual fact I was running in a small circle. I stopped suddenly, calling myself a silly fool, as I wasn’t going anywhere. I felt that the fire party on the deck would soon put out the fires, which they did. The next thing I heard was a voice calling up the stairway ‘Do you need first aid?’ I said ‘Yes’ and two ratings appeared with a special stretcher used for lowering patients down hatchways. An officer no more than a few feet away from me had been looking through a porthole to see what was happening and received all the shattered glass in this face – he was a bloody mess and unconscious. We put him on the stretcher and I helped to carry him to the sickbay for treatment. On the way I felt the Officer give a shudder and am convinced that he died then. I returned to my duty in the Operations Room. Later, the Commander of Operations held an inquest as to what we had done. I suppose I was wrong in leaving my post, but I just wanted to help the officer to the sickbay. The Commander overlooked the fact that I had left my post in these extenuating circumstances. The ship received a large hole in the flight deck and the hanger deck. All the fires were extinguished and within four hours the ship's crew, working magnificently, had temporarily repaired the damaged decks and we were able to land our own aircraft, though we had to operate the arrester wires and barriers manually. Later it was found that ten people had been killed and fifty injured, and it was then I discovered blood on my new PO badge, presumably from the injured officer. Not a day to easily forget. The ship returned to Sydney for urgent repairs and we had a spot of leave, but that’s another story. Frank Smeeton
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Why Me? Why me? Why me they cry Why them indeed What did I do wrong A hand of God apparently A life changing event instead It’s left me numb, can’t move, dead parts, people think I’m drunk and talk funny I’m not, it’s my stroke I cry I don’t want a stick, a frame, a stupid cast to stop my foot from dropping I can’t even hold a cup of tea They come and wipe my bum I can do that I’m screaming inside, but I can’t speak cos of my stupid stroke They don’t know me, my life, what I did but they still come and wipe my bum All I want is to go outside, someone to push me but no 30 minutes is all I’m allowed What about the bills, I can’t even sign my name, will they put me in a home, I don’t want to sleep downstairs away from the one I love
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Meals on wheels all cold and sloppy, different faces 3 to 4 times a day. I want to stay up late and not go to bed at 7pm But there is hope I tell them honest there is Come to Stroke Café, sit, have a brew and a butty There’s friendly faces where everyone knows your name, a place where everyone ‘gets you’, there’s no shame, dribble if you want – it’s ok we all understand (Honestly we do!) You’re not alone so let me hold your hand and please don’t cry ‘Why me?’ Helen Gilbertson
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It’s Not All Doom And Gloom (Stroke That Is!) It wasn’t expected, but we were prepared. Not prepared for this exactly, but prepared for something. No responsibilities, no kids, no elderly parents to look after. Quietly observing the feckless, with their heads in the sand. We’d been conservative, too conservative. Where had the fun gone, what life was this? But that’s the price you pay for security and it was about to pay off. We were both in work, there was sick pay to help, medical insurance too. The mortgage was sensible and we had some savings to spare. Don’t panic I thought. Well not quite yet. I’d improve in time. I was fit and that made a difference. My treatment was textbook and I recovered quickly. My appearance is normal, my deficits intangible. I’m mistaken for a volunteer, not a survivor. I’m not going to get any sympathy, my story is not compelling. We like a hard luck story, we root for the underdog. We like a bit of life experience and character, but that’s not really me. We have the deserving and undeserving poor. Do we apply the same principles to the sick? I’m luckier than most, etcetera, etcetera, that’s how I feel I should feel. But some of my luck is borne out of hard work, wise decisions and sacrifice. 54
I earned that luck, fair and square. I’m 42 and it’s a long time until I can retire. Yes, it could have been much worse, but it still could be again in the future. There’s plenty of time yet for more challenges. I didn’t deserve a stroke at my age, my best years were certainly not behind me. So, there remain uncertain times are ahead of me and I don’t have a safety net. I have to walk the tightrope of not knowing whether death or disability is 30 seconds away or 30 years away. Wish me luck! William Martin
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Our Plight Stroke is a word we all know little about We soon have to learn of that there's no doubt One minute we’re normal, whatever that means The next we can't speak, except in our dreams Our legs they feel strange as though they’re not there Our arms, we can't hold them, up in the air What is happening we hear ourselves cry Is this the end are we going to die? Our lives have changed now we must fight The stroke must not win as this is our plight Frustrated and angry, that's you and me One side of our brain is damaged you see We have to re-learn the things we once did And all the adaption’s we try and rid Christine Halford
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Same Old Me Why can't people just treat me the same? It's my legs that don't work, not my brain They don't see me, they just see my chair So they stop to look and even stare It's the same old me, just with four wheels But you have no clue just how it feels. How would you like to be ignored? I'm sure you would get very bored But ignoring me as if I'm not there Is just as bad as stopping to stare And it's patronising treating me like a child So I bite my tongue from running wild Ignorance can't be justified as an excuse And it won't make me become a recluse Instead I carry on and hold my head high You won't have the satisfaction of making me cry. Natalie Halford
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My Story The stroke that I had made me feel so low And my confidence took such a knock I felt no one could relate to my pain And on my own I would have to cope Then I was invited to the stroke cafe Where I met people the same as me At last I had people who understood And could talk with them in the same way Now my confidence is getting better I have hope and am positive too That my new friends are there to help me And I can cope with what life has for me My last hospital visit gave great news I felt like jumping for joy on that day Now my love for life has returned And look forward to everyday. After the stroke has hit you There doesn’t seem much you can do Then one learns about places to go to Where people can empathise with you The stroke cafes the place where it happens Where one meets and make friends too Then expectation turns into positive thoughts 58
And hope becomes what you can do So never give up on your ideas Cos help is always at hand Advice is freely given So just live life to the full. Mary Heathcote
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Afterword Writing on the Wall is a dynamic, Liverpool-based community organisation that celebrates writing in all its forms. We hold an annual festival and a series of year-round projects. We work with a broad and inclusive definition of writing that embraces literature, creative writing, journalism and nonfiction, poetry, song-writing, and storytelling. We work with local, national and international writers whose work provokes controversy and debate, and with all of Liverpool’s communities to promote and celebrate individual and collective creativity. WoW creative writing projects support health, well-being and personal development. If you have a story to tell, or would like to take part in, or work with WoW to develop a writing project, please get in touch – we’d love to hear from you. Writing on the Wall info@writingonthewall.org.uk www.writingonthewall.org.uk 0151 703 0020
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