Tony’s Story
It was nearing Christmas – the 5th of December – 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 wasn’t too concerned.
Seeing Joe was always a good experience as he always greeted me like an affectionate son. We sat and talked and caught up with news. The conversation turned to altered states of human experience, so I found a video of brain researcher Jill Bolte Taylor describing her experience of having a stroke and we watched it together.
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 goodbye 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.
Then I must have collapsed down on my knees, and reaching over to my right arm and leg I realised they were cold and lifeless.
Joe thought I was joking with him, having just watched the stroke video! But here my experience of the stroke diverts from what Joe and CJ observed. Joe says that as I starting 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. Their 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 regarding 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, Joe’s notes clarify this:
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.
The next thing I can clearly remember is being on the trolley in the hospital, going down in the lift to have a scan. Strangely enough I seemed quite clear and okay about that. I thought: Oh well, I just need to lie here. I knew I had had a stroke because I understood my right side was paralyzed and that’s why they were giving me a scan. I don’t know if I heard it or I knew it.
My son 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.
Actually, I had language but I couldn’t express it. I could understand what everybody was saying and I could read notices on the wall. And I noticed that there was a function that wouldn’t allow me to express it. It’s like I’m here and I understand you, and to say something, this huge empty space occurs, and to get the word I have to reach into this enormous void. Whereas usually you think something and the word comes. Of course we’re always reaching into the void of unknowing but now I couldn’t find anything. Or its like being in a car and the accelerator doesn’t work, and the gear doesn’t connect you with drive.
After the scan, they put me to bed, and the next thing I knew there was my family sitting there and CJ and Joe was there. So I must have been out for a while. But my consciousness from then on was very different.
I could see the shock on their faces as if I was on a different level and I inhabited this preverbal level. I felt this incredible peace, and I looked at my family, and I tried to communicate that but I couldn’t speak of course. At this preverbal level there were no conflicts as there are with words. I wanted to stay in that condition. I just felt quite peaceful and loving.
While my family were there, I wanted to observe them and beam out this loving quietness. I could stare at them and read them. I saw CJ running around like crazy, and I saw that she needed to do that because it was her way of feeling that she could maintain an anchor in her life. For my son Quentin I saw pain, and my son Leon, I could see that he opened his feelings. Maybe that’s why he fainted at the bedside. It felt like he’d broken through a barrier between us. From there on we seemed to have a better relationship.
I could see that you, Dina, were motivated by a caring and loving impulse but also you were worried about me. Words were beginning to come in then but I still had that lovely peace.
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 the 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.
I found conversation distracting and sort of irrelevant because I dearly wanted to merge fully into that peace. The peace was a very felt thing as real as getting into a warm bath. It was a peace I had known before but clearer and stronger.
I can’t remember wondering if I would get back to how I had been. I didn’t even think about the future. It didn’t enter my head really. People would ask me, and I felt it was going to be okay but I wasn’t really thinking about it.
I just felt I love this place, this ability to lie here and look. I would sink back into that quiet place and I was in that all the time.
I liked being there in the hospital and being looked after. I really enjoyed that period of peace. I could sit there all day and not want to move and just enjoy it. I did begin to exercise, some yoga postures, because I felt I needed it. The specialist was amazed I could do it. I had the idea, if I can improve my condition I will, which I did. I didn’t refuse any help.
I didn’t think of it as getting better. If my body was lying around, I was going to have to move as I was going to get out of hospital, so I might as well get up and get my body in good condition to do that. I guess it’s partly pleasant habits. I enjoy moving and it feels good.
I did some yoga postures on the bed to see if I could move okay and stretch okay and I did. They asked me how would I cope with stairs because I have stairs in my house. And I said I do two at a time and I ran up. That is incredible because of what happened afterwards and is still happening with my difficulties in walking.
At that point I wasn’t having trouble walking and I could see myself regaining my speech. And if I didn’t that would be good because I loved that quietness.
Somebody gave me a book and I could read it easily, but normally you build up an understanding from one sentence to the next to get an overall picture. I’d understand each sentence but I couldn’t hold it in my mind when I read the next sentence. I’d forgotten the last sentence.
When I tried to talk to the people who visited, I thought it was slightly funny because I was saying mixed up words, sometimes I couldn’t find the right words, and also trying to find something that expressed what I wanted but I couldn’t. For instance I was asking CJ to tell a friend that I had experienced a stroke. But what came out was, “Tell her I had a social.”
These experiences had a profound effect on the way I saw the mind or ones 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.
I couldn’t pick out my language as I used to. The things that I said were an amazing mixture of words that somehow usually communicated. I felt this wasn’t quite right but this is as near as I can get. I certainly couldn’t communicate intellectual ideas. 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 is even brighter. Tony
I didn’t mind it because I knew I’m still here. It’s a bit like if you can’t connect up to the internet. You’ve got something to say but you can’t get the connections, or like sitting in a car and nothing works. I felt like that. I haven’t got the equipment to do what I want to do. But I felt very whole. And I could see each day I was learning a bit more, so I thought, it’s okay
It was as if I felt it would be okay even if I had to spend the rest of my life like that. I love to communicate but it felt like there were other ways to communicate.
So I didn’t go out of my way to practice conversation. If someone offered me an opportunity, I would take it. As it happens, when speech therapy was offered to me in Wales, I passed all the tests, and she had nothing to offer me.
I don’t know what it would have been like if I had got frustrated. I didn’t. I think I recognized the situation that I am here, my equipment to express has been damaged, what can you do about that? You can gradually rebuild it perhaps.
Years ago, I used to suffer great frustration. I remember once going for a walk in Devon with Hyone, my wife when I was feeling depleted, and I felt terrible and I wept because I couldn’t climb this hill. There was that frustration.
But I haven’t suffered that frustration for many years. Then I was angry about my condition as a human being. I felt I couldn’t do as other men could sexually and physically because of energy problems, yet I seemed to have a body that looked as if it could.
I’d learned over the years this business of not responding to these emotions that tear you apart if you let them. Once you learn to stand in the middle and manage it well, you don’t feel those emotions. You have a different standpoint. I think the main thing is that I had learned not to identify myself as my body and its functions, but as Life itself.
When it was time to leave the hospital, I felt okay. I was ready to go home. The whole family got together at my son Leon’s and we had a meal together and had a photograph with all of us there. My daughter Helen drove me and my son Quentin home.
I remember an embarrassing moment because I couldn’t hold my urine easily and I wanted to rush to the toilet and my neighbour gave me a hug and I couldn’t control it and I felt, I hope she doesn’t see this.
Helen and I had a meal. I wanted to show her the lovely walks around there so we walked up that hill, not terribly strenuous, and we came down and she left by taxi to the station because I wasn’t allowed to drive. Next day I felt this incredible heavy head, like a pressure not able to think, and then things started to go wrong.
I felt physically awful, not being able to be bright. I often feel very bright inside and think clearly. And this was like clouding and pressure. That only lasted another day and I came out of it. Then surprisingly I couldn’t walk, I couldn’t move around, difficult to climb stairs, my speech seemed to be much the same so I thought maybe it was the drugs. From then on I couldn’t really wake up in the morning. I needed to stay in bed for about 10 hours and even then it was difficult to get up. This huge lethargy has only started to go in recent weeks.
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, I must have fallen 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. So getting up in the morning I described as ‘climbing out of hell’. I did learn that moving and stretching got me through though. 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.”
So there was a huge change that either the drugs or something brought about. The stroke specialist said that sometimes afterwards the brain swells and damages more cells. Or maybe I had another small stroke which I caused by doing too much that day Helen brought me home. If that is why, I was silly to have done that because it set me back probably years. Or a year anyhow. One can degrade in one’s ability and it comes and goes and I need to exercise it to strengthen myself.
I honestly can’t remember any feelings about this change. I think I learned something very profound from standing in the middle as described earlier. I learned to allow the feelings but not in a reactive way. I learned to watch them and see where they were coming from and where they were going. And I don’t think I’m much of a thinker: I didn’t think, should I do this or think that. I just got up each day and did what I could however I could.
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 don’t believe that. But certainly six months later I can write, but not creatively as I did. 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 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 you look into yourself, there is a great void, emptiness, yet miraculously things emerge. So I believe that acknowledging the apparent nothingness and recognising it as the source of everything you call self, sets you free.
I had this wonderful dream a while back. I remember that I saw the whole unfoldment of my life in this dream and it felt like something special had happened. I had achieved what I wanted to, in what I wanted to write, and I had summarized my life in what I wrote, and it doesn’t matter whether I write again because I’ve achieved fruition. And that was a wonderful dream. That was about a month ago.
But fruition is now part of me, and I can talk about it, express it or live it, and if I want to live it I think I can do that in an everyday way like I do with my garden or talking with Quentin or meeting people.
So working on the book with you feels like a lovely way of being with you and expressing what my fruition is. I hope to share whatever I can or say whatever I can about what fruit I’ve borne. I see myself as trying to take an active part in it but I can’t see myself writing. I suppose the picture I get is if it is possible to share that place of open freedom in whatever way with you or with the book, I want to do that if possible.
I have fairly restricted use of language, and I don’t seem to be struggling to get it. I might do but I feel as if my clumsy language or inadequate language seems to be okay for my needs at the moment. I used to write poetry all the time and I’ve never managed it since. I guess I’ve written enough poetry. But I haven’t even got that wonderful experience that flowed into poetry.
There’s no doubt that the stroke changed my life completely, like an earthquake. Old landmarks disappeared. I have been stripped bare of abilities that I had, such as writing, and particularly my quite enormous ability to sense things intuitively to the degree that I could. It feels as if it’s left me with what is important really, that central self, and I’m trying to find a way of living more fully from there.
I suppose what I want to do is to live more fully as somebody who’s connected to the universe and everybody in it, who recognizes and uses the incredible potential from that source . And I want to reach out for it as much as I can.
It’s meant living in uncertainty about what the future is. I don’t find that difficult but I can see it opens you to all sorts of uncertain things.
When I had those abilities that were stripped away, I had a direction in front of me that I could take and use, and now I haven’t got a direction and I feel as if I need to, have to, I want to live in more immediate responses to people and events. That probably sums it up.
But I think it is important that I was stripped bare. It’s wonderful that I was stripped bare, of language, ability to move easily, to do things, and know this wonderful nakedness. Some thing Dina helped to uncover about myself and the stroke was that I had in some way died. Words came out of me from deep inside – “Do not expect me to be the same man you knew before the stroke. I cannot respond to you in the old way, as I am developing anew.”
I feel as if there is something just ahead that I’m going to get or merge into that I’m reaching for. What I sense is that these areas are all expressions of my energy and all that is closed down because it is going there, to a different experience of myself, a lovely experience of myself.
A week or so ago I did some yoga, first time I managed it, and I sat up, and had this sense of something rising in me, and it went out the top and then opened, a clear consciousness, like a clear sky, nothing else, immense space. Maybe that’s where I’m going.