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.

Andy McKillop

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’.

Andy McKillop

 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 17^th 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.

Andy McKillop

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 10^th 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 bought the book and encouraged my family to read it. My children have made loving concessions, without a second thought, throughout their lives concerning Mum. My son wrapped his right arm in a sling and concentrated not to use it for a day to understand what I had to deal with, but he could not keep it on. I took charge by telephoning Connect in London. Teresa Regan answered the phone with her calm voice and that reassured me. She gave me the directions, which meant nothing to me, so I sought my daughter who lives in London to guide me to Connect. We went to Drop-in to meet the kind staff and the people who have what I have. I belonged. So elated was I, for the magnitude of seeing and touching kindred individuals, to share in their pain and be uplifted. I realized that many people from a rainbow of lifestyles have this common denominator, aphasia. 

Through Connect I am more aware of the injustice, bullying, molding I had undergone, sometimes intentionally more out of their character.  People around me were constantly maneuvering me into a person I did not recognize. I am also more conscious that those close to me (as well as the many informal acquaintances I have met throughout the years) have some degree of innocence and ignorance of aphasia. Without Connect I would still be under the ground not knowing how to take a step out of the tunnel. I am beginning to learn, with encouragement from Connect, who I am and that is priceless. I have my own unique personality. I do have Aphasia.

Understanding my aphasia
I will never inhabit the body that most adults take for granted. I missed the elections vote in U.S.A. I will never vote in any of the UK elections because I am still an American citizen. After my accident, priority was given to teaching me the basic tools of living. Politics was at the bottom of a big pile of things I had to relearn, although that didn’t stop my attempts. I recall watching “Question Time” for years. Our children were young yet I was determined to understand the quick talk and the bonus of relearning words. Before, the programme was undecipherable, but I persisted and now I have a smattering of knowledge about the politics of England.

There are instances where in a shop the person behind me is so impatient and rude to hurry me up that I flounder. Confused with the money and caught in a stressful predicament, I let go of whatever is in my right hand. My cheeks were burning out of anger and humiliation I leave the shop distressed. Other times, too many to mention, I do say that I have aphasia. Either they want to know and find it incredible, the fact halts the conversation or pretends to know and guess what is it, which cause awkwardness or dismiss it. I could not argue.

I do not think that I will ever understand premiums, bills, mortgages, insurances, fuses, cars, answering machine on phones, digital cameras or the difference between right wing and left wing etc. Environmental issues evade me, however understanding the basics of a computer are slowly within my grasp, as are the mobile phone and the remote control. I will always be slow, but thanks to Connect, the staff and other people with aphasia there, I am better equipped for a brighter approach to life.

I arranged to attend a “hand control group” at the hospital, but some had Carpal Tunnel Syndrome and others harmed fingers and hands. I alone could not feel my right hand. One of the exercises was to reach into a large bowl and grasp an item with the damaged hand, but when I tried, my fingers seized up in dislocation. The occupational therapist massaged the hand or both.  I was dismissed because I could not manage. What upset me the most was that both the nurse and the therapist knew only vaguely the definition of aphasia. My doctor suggested I reclaim my right hand for my benefit. Twice she wrote a prescription to enroll me into the gym to strengthen my right side, but the effort was wasted. I failed. They failed.

I seized the opportunity to volunteer as a teacher at the Adult Studies Centre because there were adults there that read or learned numbers slowly (similar to me, now). I trained to be an assistant teacher, internally only and insisted on teaching one-to-one.  I earned the Guild certificates of Literature and basic numbers, to add and subtract, but still I was not satisfied. I left six years later.

One of my daughters helped me to find a job by scouring the newspaper, persuading me that I could be a reliable and gentle carer. She argued that I had been a full-time mother for 29 years and had nothing to lose. I was successfully employed as a carer at a local Alzheimer’s Care Home. I was overjoyed because someone needed me. But I was too slow. One of the residents said, in her demented state: “You are a bloody nuisance”! My boss thought otherwise though and tried me out as Recreational Therapist. I worked at the Nursing home for eight years enjoying the ability to raise a smile or even laughter, perceiving the person behind the cruel disease. But, sadly, that came to an end through the new owners mismanagement of the money.

My children matured in turn, and I was proud of them; however deep inside of me, my psyche existed in a tunnel under the earth. It felt as though my life was pointless except for my being a vehicle for my children to be born. I did know that I had no personality. My identity was a mismatch of the characteristics I admired in the people I knew. I was waiting for someone to recognize my plight to urge me to raise myself from this tunnel but it was I who unearthed me.

Find out what happened when I discovered Connect in the third part of my story – coming soon.

There are some who felt relieved that my quick tongue was silenced. My wit, the ability to play with words, something I always thought endearing and fun were destroyed. My writing was irretrievably damaged causing sentences not to be grammatically correct. Reading, an activity I have always enjoyed, was doomed. I was compelled to re-read a book, and even then the wealth of the plot was obscure. Arithmetic I understood and the times table was secure in my memory, but now, as it was right after my accident, the numbers are unfathomable. I find the whole process of dealing with facts and figures nearly impossible. Aphasia was and is a word on paper.

Unfortunately I could not go back to university so my brother enrolled me at college. Single course upon single course I undertook, which gave me slight encouragement and some confidence but the career of writing I wanted was totally destroyed.

I dated the boyfriends I had before the accident. But was smitten with an English gentleman who I met six years previously and we fell in love and were married.

The accident threw me back to my early teens in my mind. My parents and older siblings observed my actions and consequently treated me as such. I married early after the accident, and in my altered mind I began to have babies.

In hindsight I must ‘grow up’ again this time with children. Difficult times were ahead but doable. I relished the fact that I was “normal” in my pregnancy, and birthing our four children was my delight. Raising the children was challenging but fulfilling.

 I didn’t know how deep and devastating depression could be, however, I can only now appreciate this insight as I was unable to express my feelings then. The strength of despair was such that I was not aware it could exist. The events were comparable to a kaleidoscope, coloured glass in mirrors in the tube constantly changing. It was not a toy though.  On the outside I was cheerful, practical, but did not say much because people would find out. I was ashamed of having brain damage, realizing that if I said I was crushed by a truck, they would treat me differently. So I kept this horrific accident a secret.

Part 2 to follow

‘That’s what I have in the morning, until I have a cup of coffee!’ is what one person at work said to me when I told her about mum’s aphasia, and she’s not the only one to have said it either. It amazes me that people can be so tactless about something so serious, something that affects so many people in ways that we can’t imagine. Later on, that same woman told me about her mother’s arthritis and I couldn’t help but think, how would she feel if I turned to her and said:

‘Yeah, I experience pain like that when I haven’t done yoga in a while…’

Connect gave me encouragement and hope.  I found a place to belong where there was no judgements just friendship.  I would have to say Connect saved my life and gave me life.  I can now speak, much to the annoyance to friends and family!  I can read again, slowly, but I read! 

Thirteen years on I have trained to be a counsellor to help other people with aphasia.  I have to thank Carole, Sue and Harry for that, letting me do my training at Connect.  I am engaged and getting married next year and we have a beautiful daughter who will turn one next week.  I never thought my life would be this happy after having aphasia, but it might have been the best thing to happen to me all in all.  Teaching me so much and introducing me to the extremely kind and generous people of Connect.

Jasvinder Khosa

I was lucky to be one of the first people with aphasia to be involved with Connect.  Susie Parr interviewed me. Her work later became a book called Talking About Aphasia.  It was the precursor of another book called Aphasia Inside Out: I think this book was the first that placed the experiences of people with aphasia at the centre instead of the usual experts/language therapists etc going on their sweet way giving us the low down on what is like for a person with aphasia!!! You know what I mean….

Susie later asked me to join an advisory panel at the City University for what eventually became the Stroke and Aphasia Handbook. I can remember she met me off the train at King’s Cross from Bradford. I think it was the first time on my own travelling on a train and certainly I was fearful on the tube to the university even with Susie by my side! I felt silly…especially someone used to travelling weeks at a time in a foreign country. I was panicked by so very many people, very busy, very noisy, very fast and faster… I felt utterly confused by the inssecant and dis-connected happenings. But it was worth it. Why? Because I was asked, Connect gave me – what I can see – and all people with aphasia walking in through the doors at Marshalsea Road respect. And with respect comes worth.

Find out more about the books:

Talking about Aphasia: Living with Loss of Language After Stroke, Parr S, Byng S, Gilpin S

Aphasia Inside Out: Reflections on Communication Disability, Parr S, Duchan J, Pound C,

Stroke and Aphasia handbook http://www.ukconnect.org/publications_26_121.aspx