Emily had a stroke in May 2012 and has aphasia. She has been coming to Connect since September 2012. This is Emily’s blog, written in her own words. She wants to share with other people what aphasia is to her, and to hear what others have to say.
I am a Doctor of Visual Culture Studies and a few months ago, I had a stroke.
I have aphasia and I have apraxia of speech. My ability to speak is not so much driven by my language, but by my ability to remember the words. My words are doing a quick run around in my head. More than that, it is quite feasible that I have Visual Cultural Studies, with a special emphasis on empathy.
Aphasia is not a communicable disease, but is matter finding the words of writing, reading and in conversation. I may have lost the talent, but I know it is there, after all I have letters after my name. Apraxia, is slightly different. I’ve lost the power of speech but I have “digital or motor planning disorders… or failure to comprehend simple commands” (Wikepedia). So in affect, their gibberish coming out of my mouth but, in my head it all makes sense.
Well, Let me just take you back two years.
One day in New Zealand.
One of days when you are just expecting to hear ever things normal, I was told I meant to have a stroke. There still was some unreliability and some questions whether I could finish my thesis, but inevitably, there were things needed to be rushed through. I had two years before I before my thesis:
”Only the darkness knows who I am. : Discourses on x-rays in the ‘shadow clinic’ and how visualising shadows contributes to the possibilities of aesthetic empathy in the perception of the body in x-ray imagery”.
Following that I sold my belongings, got myself back to UK and was up May 10 when I had a stroke. I had taken 5 months in the UK!
The day it happens….
It was a morning like most others…about 10 am. Certainly I had a turn, a certain something that is unlike anything else. My head went and my body went – I remember my finger to get to phone, or rather the phone not working. I was up off the table but I couldn’t move anywhere. My head was too difficult to move and I was curling into a ball saying: “Oh God, Oh God”. It was a rather pitiful image. Gradually I realised I could move again – I locked to everything and moved to Charing X. I took myself off on an Underground and when i got there…I said think I have had a stoke.
It was a long day. About 1.oo I phoned Dom. I had nothing wrong and was sent home.
Dom came in with Doctoral of Philsophy….it had come through there post. I told him I had thought I had had a stroke everything seemed to be ok. In the car, I got morose with him and he did not me to go back. Luckily, he told me it would better if I stayed there.
Gradually my humour came but suddenly I realised I wasn’t making much sense. Ask the night went on my brother and my sis in law, thought it was too much wine. I went the bed early and that night thought I should never say “Ned” (my nephews name) again.
The next day…I woke up and I couldn’t speak. My face was half there and my limbs were weakening.
A amblunce was called and I returned on Charing X.
Well, there is it. I was there for a month. During my time there I had a couple of very capable speech therapists who were good. Jenny and Steve were trojans. I remembered playing cards with Jenny….we kind of made all the rules because i couldn’t remember them. My family came around a lot - from bad rhymes with Tor, even worse rhymes with Tony….my days were an endless source of optinum entertainemt.
During this time I met Ben, my third brother, and wife Sindhu – there came to visit me and I went to stay at Ma’s house when they stayed there (Ma, was away on holidays). I went to stay with them for a couple of weeks of then off to Wolfsons.
Now I am taking part in lots of research into various aspects of aphasia. I visit Connect regularly and I am looking forward to being a befriender. Having finished my PhD, I am looking for that elusive job…
A blog post by Deborah Baker – daughter of Sharon Baker, a volunteer with aphasia who runs the Canterbury Drop-In
When my Mum first spoke of having a Connect drop-in centre in Canterbury like the one in London, I thought it was a super idea albeit one that would take years of planning, which is why I’m both surprised and delighted at how fast this dream of hers has come to fruition. With the help of Connect staff Alex, Nathalie and Martyn and friend Matthew Hickson (who has aphasia), the first drop-in session took place at the Umbrella Centre in Canterbury on Thursday 15th September and was a great success.
I thought my Mum would be nervous about being in charge, so to speak. But as we set off to meet the volunteers at the centre she was calm and collected. We met Nathalie, who had kindly come to Canterbury for the morning to show her support. We also met Betty and Minoo, two of the volunteers who attended the training at the start of the month. I was certain that as 10 o’clock approached Mum would start to get butterflies, but if she did, she never let on. She was ready with name badges, forms and biscuits to go with the tea and coffee. She had arranged beforehand to have the chairs set out in a circle to enable us all to circulate throughout the morning.
The first to arrive was George, a lovely man who had a stroke two years ago and still has trouble finding certain words. George found out about the meeting at the hospital where Mum had left some flyers the previous month. The second person with aphasia to arrive was Lal who hardly has any speech at all, yet remains able to show his positivity through his infectious smile. He was accompanied by his wife, Indu, who drove them to Canterbury all the way from the Isle of Sheppey. Third to arrive was Claire with her friend Maria. Claire had a stroke fairly recently and though her speech is limited, she has made great progress and continues to do so with the help of her friends and family. Last, but not least were Ian and his wife Valerie. Ian spoke about his three children and his work as a carpenter prior to his strokes.
The morning went by so quickly that each one of us was shocked when we realised that two hours had passed and it was time to wind up our conversations and say goodbye. It was great to speak to other locals about their troubles and triumphs and to share ideas about everything from speaking exercises to relaxation techniques. I am sure that everyone enjoyed the opportunity to talk to others about their experiences in a friendly environment and I don’t doubt that Connect Canterbury will go from strength to strength. Special thanks is due to the staff at Connect, the volunteers, all those who organised fundraising events to raise money for Connect Canterbury and of course to my inspirational Mum who had the vision, the perseverance and the dedication to make it happen.
Part 3 of Andy’s Story – in his own words
An old friend was now a partner in a plant nursery not far from where we lived. Nick and his partner John gave me some part-time work and I learned so much from them and can’t begin to tell them how grateful I am to them for it. But I thought I’d try to get a more advanced qualifications. Ah! I had taken a step too far. I still had aphasia, and still had difficulties processing information. I narrowly failed the written exams but was thrilled to pass the practical exam with flying colours. I didn’t end up with an Advanced Certificate, but I did end up a lot more knowledge about gardens and gardening. And so, for the past 5 years or so, I’ve been gardening and loving it and have learned to recognize that my stroke has left me with some problems that I’ll probably just have to accept and accept smilingly.
By 2009, our children had grown up and we had a grandson. My wife had been working since 2004 in London with a punishing commute from Hertfordshire, so we moved to London, closer to daughter, son-in-law and grandson and closer to my wife’s work; we got rid of so much stuff (books, pictures, furniture, 20 years worth of clutter) that we felt lighter than we had for years. Back in London, wanting to try volunteering to support people with aphasia like me, I sent an email to Dr Tony Rudd who was in charge of the stroke unit at St Thomas’s when I had my stroke to ask his advice about volunteering; and he put me in touch with CONNECT as his unit and the charity were running various projects together.
And so I began to come to Connect, not only as someone who has had a stroke and has aphasia, but I’ve also had training at Connect to be one of the befrienders who go to visit people who had just recently had a stroke and who want to find out a bit more about life after a stroke and living with aphasia; I’ve also had training at Connect to be one of our ‘Ambassadors’ – people with aphasia who go to speak to institutions, bodies, companies about the problems of aphasia, to tell them that people with aphasia have their own problems but are still active and intelligent people; and I’ve also become a member of one of Connect’s local aphasia hubs. I can’t believe how busy my voluntary life has become, how fulfilling it is. I’m so pleased to be able to go to the Drop-in session at the Connect offices on a Thursday and to meet up with other people who have had a stroke and have aphasia – old and young, from all walks of life. And that feeling of community that I found had disappeared when I had to retire from my publishing work? – well, I’ve found it again. I’m proud to be part of the Connect community and feel almost as if I now have a new, extended family. And that phrase from John Donne? Maybe he’s right – ‘no man is an island’.
Part 2 of Andy’s story – in his own words.
But how can a publisher who has lost his language get back to work? The short answer is that he can’t. I didn’t know it at the time – I thought I could return to my old job and take up where I had left off as if nothing had changed. How wrong I was. Family and friends were fantastically supportive and helped me to regain some of my old linguistic abilities but it wasn’t enough for the requirements of my old work. I finally had to admit defeat in my efforts and ‘retired’ from my publishing work in June 2004.
How could I cope with the idea that I had been cast aside, that I was ‘damaged goods’, that I was somehow an embarrassment to my work colleagues and bosses, that, however useful and effective I had been for so many years, I no longer fitted? What about the role and identity (publisher, editor, director of a big company) that I had and that somehow defined my own idea of myself? Suddenly I felt a strong sense of loss, of grief for the life I had had and that had died with my stroke. It was as if I was isolated – not just because of the continuing aphasia that affected me but because I hadn’t yet found a new role, a new definition of myself. It was as if one of the writings of one of my favourite English poets, John Donne, just didn’t apply to me. He wrote, in the early part of the 17th century ‘No man is an island’ – and yet that was the way it felt to me at the time. Recovering from the immediate effects of the stroke was the easy part; the difficult part would be moving forward and creating a new way of life that would be fulfilling and full of interest just as my old life had been. It took some time, but I began to get there…
Readingwas still very difficult for me, so I began to look at things much more closely – paintings, photographs, plants. I continued to listen to lots of music, all sorts of music (but to my dismay, I had ‘lost’ most of the lyrics of the songs I used to love singing). Other things began to become more important to me and now, with hindsight, this enforced change in my life also enriched my life.
I was still anxious to find an active role in my new life. I wasn’t ready to retire into a life of nothing but leisure and regret. I had trained as a teacher: maybe I could go back to teaching. But when I began to think about what teaching would really entail, I realized that I wasn’t going to be able to do it properly for the students or healthily for myself: there was too much noise, too much stress, too much rush, too many deadlines. My stroke and those ‘deficits’ meant that I wouldn’t – couldn’t – be an effective, good teacher, and meant that I would be putting myself under too much strain.
When my wife and I bought our first flat, it felt quite natural to us that we created our first garden. Full of enthusiasm, but short of knowledge. We moved to a bigger suburban house with a much bigger garden where we grew vegetables. It was my wife who said ‘You love your garden and love working in it. Why don’t you try to do something with that?’ Well, it was a moment of revelation. Yes! I wouldn’t have to read too much; I wouldn’t have to go to meetings or answer the phone, or to late-night dinners. ‘Easy,’ I thought. Not quite… I had to go back to college to do some qualifications before I could launch myself on the world as a gardener. I did the Royal Horticultural Society General Certificate – and passed the exams. But it was hard work – I still couldn’t read very quickly; and although my speech had recovered well, I was still quite aphasic at times; I had difficulties understanding new names (all of those botanical names!) and found it hard to concentrate for long stretches of time. But I was elated when I passed (and passed well!) and was able to start working as a gardener.
Part 1 of Andy’s story – in his own words.
When I was a raw young teenager I met a man who shaped my life for the next four decades. I was 14, he was maybe 40, and although I wasn’t tall, he was shorter than me. He was my English teacher and it was his enthusiasm that sparked off something in me, the way that he inspired me to start reading poetry closely. Whatever it was, I have to thank Ben Donachie for the passion for poetry, writing and words that would never leave me. Not even after the stroke I had in April 2003 that left me lost for words and puzzled – the main effect of my stroke was aphasia.
The spark that lit a fire in me at 14 led me to read philosophy and theology inFranceand then English Literature and Language atGlasgowUniversity. Many years later whilst working as a sub-editor in Bejing I found the thing I really wanted to do – work in publishing.
In early 1978 I became a copy-writer for a paperback company. It was as if I had died and gone to heaven – I had to read lots of books and then had to write the ‘covercopy’ that would appear on the back cover of the book. I rose up the ladder until I finally became a publishing director at one of the bigUKpublishing companies, Random House. I loved my work so much – reading all the time, editing writers’ work, trying the best way to publish their books, discussing how the book’s cover should look, meeting with other British publishers and literary agents, and then publishers and agents from all over the world. The job occupied my waking hours (and sometimes my dreams, too). The cost? I spent less time with my family that I should have spent. But I was still a family man; and at work I felt part of a close community inLondonand part of a much larger community that spread out across the world.
And then on Thursday 10th April 2003 it all came to a juddering halt. I felt tired, and couldn’t concentrate on the crossword; but then I couldn’t make any sense of my computer when I turned it on when I got to my office; and then when I spoke to a couple of colleagues and when I left a message for my wife at her office it was clear to everyone apart from me that something serious had gone wrong. Fortunately (thanks to my wife and her insistence) I was very quickly at St Thomas’s hospital where they confirmed that I had had a stroke. I was lucky: I had no paralysis, I could walk and swallow and see; but my language had been knocked for six. I couldn’t read or write; I couldn’t really follow what was being said to me or the conversations around me; TV, radio, films were all hard to follow. But I was in hospital only for a week or so before I was discharged and went back home to start the long way back to being able to use my language again. Veronica Noah, my speech therapist, was funny and dogged and wonderful in getting me back on my feet over the next year or so (and she was strict when required – she didn’t allow me to slack on the few occasions when I felt less than inspired).
Part 2 to follow.
I happened to walk into the library with no books in mind and while I was there I looked up Aphasia and any reference to it. I found “Aphasia Inside and Out” by Susie Parr, Judy Duchan and Carole Pound. The impact of the book changed my perception of life. I cried. The tears had been eluding me because on the outside, I thought I was strong and able to fend off the loss of my identity. In truth my façade was indubitable, well protected. It was only deep inside that I was a naïve 20 year old on the cusp of being a lady. I had not grieved. These glorious words from the book were tragic yet hopeful, a book about me and those who have suffered in silence with aphasia. What a tremendous relief that I was not alone! (more…)
I tried to capture my talents again, though by this time I realized I could not feel the right side of my body. I tried my hand at crewel, sculpture, art, and writing courses and even took dance lessons for a short while, but all were to no avail. (more…)