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Tony’s Experience of Stroke

It was nearing Christmas – the 5th of December 2008 – and I had promised I would attend a party in London with my friend CJ. It was a long journey from Wales, and I also wanted to see Joe who I had spent a lot of time with as he was growing to adulthood. I needed to hurry back to Wales so I had kept the mention of my stay in London just to CJ and Joe. I wanted to see the doctor as soon as I arrived back as I had been experiencing powerful irregular heart beats.

I arrived early in London and set out to walk up Caledonian Road to the flat Joe shared with some friends. As I walked I noticed chest pains to the right and left. Having known chest pains for forty years of my life I didn’t think they were an extreme indication of anything.

Seeing Joe is always a good experience as he greets me like an affectionate son. We sat and talked, catching up with news, and the conversation turned to altered states of human experience. So I found the Jill Bolte Taylor video on the Internet and we watched the video of her experience of her stroke and the wonderful experience it unlocked for her. Tony’s Video Talking about his Stoke.

Then it was time to leave as CJ had arrived to take me to the party. I felt fine and ready to go. I stood at the top of a long flight of stairs to the street, turned to give Joe a good-bye hug, CJ having walked to the bottom of the stairs. At that point I noticed that I couldn’t see anything to my right. I turned slightly to the right wondering what was happening to my sight. There had been no warning signs of pain or aches in my head. Then it seemed to me that I collapsed down on my knees, and reaching over to my right arm and leg I realised they were cold and lifeless. At that moment I began to lose focussed awareness.

Joe thought I was joking with him, having just watched the Jill Bolte Taylor video in which she explains her experience of stroke. But here my experience of the stroke diverts from what Joe and CJ observed. Joe says that as I started to walk toward the top of the stairs his feeling turned to shock. Looking up at me from the bottom of the stairs CJ also knew something was wrong and shouted to Joe to grab me.

Fortunately Joe caught me, as CJ ran back up stairs, and together they sat me on the top step, to prevent me falling head first down the stairs. For a minute they gently tried to get my attention; tried to get me to speak and to move my arms, thinking at first that maybe I was just having a dizzy spell. But at the point where my body had completely slumped and was being held by CJ, Joe called for an ambulance. Both Joe and CJ say that the TV adverts they have since seen, warning about signs of stroke, do not portray the severity of what happened to me. For them it wasn’t a slight drooping of mouth or eye, but a complete collapse of one side of my face and body. I realised from their descriptions that the left side of my face was trying to speak, but the right side was now dead, and the struggle between right and left was not good to see. CJ said that she felt the life draining out of me as if I were dying in her arms. Her view at this point was that my face was so contorted I looked like a gargoyle. I was making inarticulate noises and my tongue was moving in an uncontrolled way.

I think it is worth mentioning the enormous difference between my experience and that of those who observed me. In regard to my mention of collapsing onto my knees, Joe’s notes clearly describe this.

You actually stayed standing for at least a few minutes. You were exploring the handle of your suitcase but you seemed to have lost understanding of how it worked or what it was. You even tried to walk to the top of the stairs and would have fallen if CJ and I hadn’t helped you into a sort of recovery position against the wall in the hallway.

And then, in regard to me saying I lost focussed awareness:

What startled me was that this seemed to happen almost instantly. We had just hugged and when you stood up again from trying to pick up your bag, you could no longer make eye contact, there was no recognition. It was such a strange turn in your behaviour that I asked you if you were having a stroke! You didn’t reply – but it was the loss of eye contact and apparent awareness that worried us enough to call the ambulance so quickly.

All this happened for me without any pain or fear or panic, and it was my good fortune to have a quick response team nearby. The paramedic arrived literally in one minute, and the ambulance arrived ten minutes later. After their initial tests and diagnosis, they picked me up and put me in the ambulance. Luck was with me as well to be taken to The Royal Free Hospital in Hampstead, which has a great stroke unit, and also to be given a ‘clot buster’ drip into my arm. This quickly disperses the clot blocking the vein to the brain. Without that the damage to my brain would have been much more severe. If the stroke had occurred in Wales I was told I would not have been given that saving aid.

What I recall from the ride in the ambulance is that I have a knack of curling up somewhere inside of myself when any severe injury is met. So I went to that safe place and gave myself over to those who were caring for me. And that care was wonderful, so much skill and knowledge shared, and so much love given. CJ and Joe were with me almost constantly for days on end. My children, Leon and Neal were there so fast too. Helen, Quentin, Mark and my grandson Ruairi arrived the next day having travelled long distances to be with me, and other friends arrived too. Thank you so much for that. It still stirs me emotionally when I remember that time. So much obvious love and care was there and holding me in the world.

When I arrived at the hospital I started feeling clear again. I remember being told I was going to have a scan and being wheeled into a lift and then out to the room where I was put into the scanner. Leon describes what happened next as follows:

When we arrived Tony had just come out of the CT scan and receiving a ‘clot buster’ injection (intravenous) that would continue for about two hours. He was conscious, looking at people and seemed to recognise them, but could not talk and appeared not to understand what was being said. He had started to be able to move his right side a little bit. The doctor said Tony had immediately showed signs of recovery as soon as the treatment started. By about three to four hours later he could move his right arm and leg more and attempt to say things, but no understandable words came out.

From that point on I feel I was aware of what was happening around me, and what was said even though I couldn’t respond verbally. But an extraordinary and unexpected thing had occurred; I was in a state of wonderful and deeply felt peace. Gradually I realised what had happened and described it as existing under a ceiling of speech, a ceiling that cut out awareness of words, and so freed me of all the conflicts, decision making, and social mannerisms that arose from being lost in words and the thoughts that arise from them. I experienced it almost as a visual thing, this great ceiling above which was the complicated world of speech, and under which was great peace.

I think this was why Leon felt that I ‘appeared not to understand what was being said.’ The peace was so great and unbroken that I could stare at my children without any usual social expressions and signs of response. It was a great experience to stare and read their many emotions, and reach out to them and hug them trying to communicate the peace I felt.

Of course, from their point of view I probably looked a mess, as due to the stroke the right side of my face, so I have been told, was still sagging. But I wasn’t aware of that – just peace and calm love. But I could not move, I couldn’t speak and had lost control of my body, to the extent that I wet the bed until a nurse put a catheter in my body. I wasn’t ‘with it’ at all.

Slowly I gained further insight into what I was experiencing. I noticed that I could read and understand the notices on the hospital ward walls. Also I knew what I wanted to express, but the mechanism of expression was now broken. So when I did try to find the words it was like looking into a vast empty space and reaching into it without success. When I think about it now, we all reach into the immense empty space of the mind and memory when we try to speak, but if you observe what occurs the words drop right into your mouth. But in my experience of stroke there were no words coming. The delivery system was broken – or as Jill Bolte Taylor says, ‘You are not a dummy, you are wounded.’

In that wonderful state of mind I looked at the faces of my family and friends and ‘read’ what they felt with extraordinary awareness. I could see and respond to the deep panic at their thought that I might be dying; the sureness and love in the face of death, the strange struggle between loving and holding back, and the tender presence. Tony’s family gathering the day he left hospital

These experiences had a profound effect on the way I saw the mind or one’s identity. When I could manage to speak, I would say to friends and family, ‘I am still here, but my mechanism of expression is broken.’ I felt completely whole within myself, but was aware there were things that were now damaged and could be re-built. So it seems to me that the brain damage did not damage ME, but my ability to function well through my body. So for instance, when I first came to write anything, although I knew what I wanted to say, the connection was now so scrambled that it came out as a strange mixture, as shown in this email I sent.

I sense you feeling in a new pathway in your footpath, your foot and your heating in your sole. You will giving the trackway and your breathless as it follows. There are only colours and tries that we collect from the many thinksing ine our way.

How the wind move and I am stand in the darkness and quietness. I see what a emotions whirling about in frightened. I see the hands and faces as them small by we all. And I takes their hands and held them cross to me. For that it we tell us if our life.

If that is love, then I take it and it give and take and another not time also.

Here is another example from a bit later as words were coming easier:

“Hi Jill – One day I will speak and I will listen. I fell into a wordless silence, and then put my head up in a quietness. Now I came by with a few words – words. They are rare and wonderful. But the silence is even brighter. Tony”

 I want to say with great strength that the BRAIN IS NOT YOU – it is an organ that links you with your body and thus enables speech and movement. See this wonderful video which demonstrates the difference between the brain and YOU. 

See https://www.youtube.com/watch?v=vNZVV4Ciccg  also see Signs of consciousness in People who are Considered Vegetative

 So I emphasise that the brain is a link with the body, and its damage does not damage you, but your ability to express. So when people are suffering Alzheimer’s, what we see is the result of the deterioration to the brain not the deterioration of them. See Talking with the dead

I was discharged from hospital within a few days, and prior to that I was tested to see if I could walk and speak well. One of the things I was asked was if I had stairs in my house. Two nurses accompanied me to some stairs and were very dubious when I told them I could climb them two at a time, and were amazed when I did. Also with the speech therapist I ran through the tests well, showing I had basic language functioning again. I stress this because when I walked out of hospital I could carry my luggage, and had no pain in my body. So in that condition Helen drove me back home to Wales. While there I insisted on taking her for a long walk up the local mountain.

Helen left a day later, and it was after that I felt things go radically wrong. My ability to walk almost became zero so that I was constantly stumbling or falling. A walk I went on with Leon on January the 4th, up the same mountain I walked with Helen, saw me falling over at least thirty times, fortunately on grass. The strength in my arms and legs also decreased to the point where I couldn’t turn over in bed, and standing up from being on my knees was a really difficult task. And then there was the pain that seemed to eat into my joints; pains and weakness caused by the drugs taken. So getting up in the morning I described as ‘climbing out of hell’. I did learn that moving and stretching got me through though. Something that was also lost with the stroke was my ability to respond emotionally and sexually. At that time it felt I could feel no emotions at all, as if I were wrapped in thick cotton wool. This has gradually changed as emotions light up again, but still no ability to fully express sexually, so no ability to get an erection..

Fortunately for me I never did lose the inner feeling of peace or the sense of ‘I am still here’! In writing to Joe about his I said. “I have been through a merry ride since I saw you – finding my way through aftermaths – and I was never much good at maths anyway.”

Some weeks after returning home I went for an appointment with a speech therapist. She took me through several tests and told me that I had done well, and there wasn’t anything else I could usefully do with her. She was fascinated by the speed of the recovery and so asked me about the clot buster and how quickly did it work. But then she asked me something else that helped me clarify my experience of stroke.

Tony two weeks after the stroke

She asked me if I had cried a lot, felt frustrated or experienced anger. I said no, I haven’t experienced any of those. I tried to explain why, but I could see she wasn’t interested in a long explanation. I did say that I had already dealt with the emotions most people stumble over, and as I had learnt not to identify with myself as a body, or speech, I felt I existed apart from the physical.

At one appointment with a stroke specialist I asked how it happened that I left hospital mobile and feeling well, and then became much more severely afflicted. She told me that often the brain swells after a stroke and so damages the brain further.

One of the specialists told me while I was in hospital that, ‘With a stroke such as you’ve had, you’ll never write again.’ I didn’t believe that. Six months later I can write, but not creatively as I did when I could write poetry. Yet again I have not felt frustrated at the loss of something that was a massive part of my life. Perhaps this is again due to learning not to identify myself as a writer, or anything else. I can do things, but I am not those things. I believe that is incredibly important in whatever life situation you find yourself in. This fundamental truth lies at the heart of the great meditation disciplines. Through them you find what is essentially you. That essence is formless, nothingness, yet within the darkness is everything. This is seen in what was said above about finding the right words in speaking. If I look into myself, there is a great void, emptiness, a nothing that is at the same time everything. Miraculously things emerge from the emptiness. So I believe that acknowledging the apparent nothingness and recognising it as the source of everything you call self, sets you free. I have realised again and again that the wonderful nothing that is everything is the essence of all living things – animals, plants even rocks – and the only thing that stops them expressing the same intelligence as us is their ‘equipment’ isn’t as sophisticated. That really came home to me when my own equipment was damaged.

A friend, Dina Glouberman, who visited me while I was still recovering my ability to speak and move wrote the following:

The thing about fear for other people is that you cannot do much about it; you are not really standing in your own ground and finding out where you are; you are trying to live in someone else’s shoes. Ever try to walk in shoes that don’t fit you? You just waddle around and get nowhere fast.

When Tony had his stroke, I was deeply worried about him and afraid for him. And although his having a stroke affected my own life in many important ways, potentially losing me a wonderful friendship and a partnership in this book, it didn’t occur to me that I should have any feelings about that. He was the one with the problem, he was the one suffering this massive crisis, and not me. So I went into shock about his life, rather than about my own.

But I finally worked out that he in fact was not the one with the problem because he was okay in himself. He was peaceful, he didn’t mind having the stroke, and for him it was just another part of his life path. I was the one with the problem because I was simply not as peaceful and accepting as he was. And it was my feelings I had to stay with before I rushed to help him.

I had to be able to say to this man with a stroke, who couldn’t speak, “This is bloody awful and I don’t like it one bit” Sounds selfish and bad, and yet it would have been much more respectful of him and of me.

Instead of that I was ultra nice and ultimately condescending, because he was not with it, and I supposedly was. And the next morning I went into shock, because I had gone beyond my limits and didn’t know it.

I will never forget a group I ran some years ago, at Easter in Skyros, when one quite wonderful participant had a brain tumour. She was a doctor herself and knew how poor her chances were, and in fact she died within the year. Yet, when people in the group felt diffident about working on their emotional issues when her problem was so much greater, she said “You insult my humanity when you won’t let me care for you as well as you care for me.”

When we stop insulting the humanity of those we love or are trying to help, we start being able to stand in our own ground, see in our own light, and really be able to reach out and be helpful if this is needed. We will be there and they will be there. And that is enough.

feathers2

I am still learning to walk, talk and write with fluency. I realised that the stroke in many ways took me back to being a baby in my abilities. As a baby I did not know how to walk and talk. I had to developed those brain circuits by constant practise. Realising that I was back in the baby ability I knew I could develop them again by practise. But I am heartened by knowing the wonderful research described in the book, The Brain that Changes Itself, by Norman Doidge. What it shows conclusively is that someone with only half a brain can develop into a full person. This is because whatever you think, feel or do, creates sets of brain circuits. So that is how a child learns to walk and talk. But even if part of the brain is damaged, by practising again and again, as a child does, you develop circuits in other part of the brain. This is because the brain has plenty of room. This also explains the depressing circuits that get built up. If you grew in a way that developed feelings of depression, then that is what you have in your life. To change that you would have to start over with new circuits developing happy feelings.

So I am working away to develop again what was destroyed. I am lucky to do so with such a feeling of peace and with so much love from those who make my life worthwhile.

 

 

 

The walk up the Welsh hills
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Comments

-Jeni 2014-10-17 10:09:43

Hi Tony

I was led to this by Facebook. Thanks for sharing your experience. My grandmother had a stroke after an operation for bowel cancer. She lost her ability to speak. It was quite amazing though to see the ways that she using other means for communicating introducing me to nurses and the like as she was always a very social person. She would look at me sometimes though with an expression I didn’t recognise and had always wondered about so thankyou with your descriptions I have some more light shed on what she may having been experiencing.
She remained in this way for about a week until she had another stroke which took away her ability to swallow this set other complications in motion and she passed away three weeks later.
I am always grateful for those moments of silence that we were able to share together in that week before the second stroke in which we got to communicate in way I hadn’t experienced before but at the same time still struggle with the fact that she had a stroke in the first place as she would probably still be alive.
Jeni

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    -Tony Crisp 2014-10-23 7:52:05

    Jeni – Thank you for saying what you did about the stroke article. I was extraordinarily lucky to be given the clot buster. Without it I would have been very severely handicapped.

    But your grandmother sounds like a wonderful woman with the sort of wisdom some mothers who become grandmothers attain. Watch your dreams. Your grandmother still cares about you.

    Tony

    Reply

-Jenny M. 2016-08-14 18:42:51

I hope you have recovered any of your abilities that you temporarily (hopefully) lost. My aunt had a stroke, it affected the side of her body, but it took a few years and after that she seemed to get back to normal. They think her stroke was due to years of smoking. She was fairly young at the time (50′s) so maybe that had something to do with her recovery. Attitude also helps, as you know. Hope you are better than ever!

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