Foreword 6 September 2018

In June 2018, I had a mild stroke. There was nothing feeling mild about the stroke. I felt like I’d been hit with a plank. But within a few days, it became clear that I had fortunately avoid a calamitous stroke. The following morning, I had an MRI. I don’t remember having had the CT scan the midnight before. The next morning MRI involved being inserted into a machine unnervingly compared with being alive in a coffin: claustrophobic and very noisy, made worse by a fragile brain. The MRI report described it as an “ischaemic stroke within the left middle cerebral artery distribution”. The findings were the “hyperacute ischaemic area within the region of the left middle cerebral artery distribution with ischaemia of the left temporal pole and left insular cortex.” Essentially, parts of this brain are generally associated with speech comprehension, and verbal memory, including other potential functions.

I read later that I was one of 240 South Africans who daily suffer a stroke. It is probably that both the experience of the stroke event, and the impact on the brain, is unique for each of them. Each of us spent our life creating our each brain, individually, since conception.

I knew that, on a Sunday afternoon, I was experiencing a stroke. Almost immediately, it seemed that the contents of my brain, was emptied. My communication with Paula was broken. It seems that I knew my name, but I didn’t even be sure even that. When I woke up on Monday morning in the Mossel Bay hospital, my brain was a blank canvas. I could think, conceptually. But I there was no word in my brain, and no name. Except for my own name.

I’m not a writer. I’m more of a chronicler, a maker of notes. I need to make sense of what I knew about myself. Like Descartes who began: “I think, therefore I am”, I started from the beginning. Borrowing a pen from the nurse, on the top of the Burger newspaper, I wrote my name. In order, it seems to emphasise my own identity, I put an asterisk next to my name. And then, I began to work on the others: my family Paula, Dylan and Lucy. Then those who I’d been with during the weekend. Then other family, then others connected to where I’d had the stroke, dragging from the recesses into the consciousness. And what is it that I spend the life. I realised that my people and my life were still there in my brain still, but are veiled. Dragging the people and my life from the recesses into my consciousness. It was the beginning of the reconstruction on the canvas. Writing it down helped for me to pin it down on a piece of paper, lest it escape beyond the veil again.

I was spared the stroke’s impact on my physical body: I avoided the partial paralysis. And with the long and short memories returned quite soon.  My battle with the stroke is with the receptiveness and the expression. Most of the posts are about this: the struggle to read and hear in processing, and in to verbal expression and writing. These posts are fragments and notes. They may repetitive, or make little sense. I wrote them, and I have included them.

I do not much editing. There is little purpose. I often think that a sentence looks wrong, or strange, but I’m not sure what it is. So my attempts have mostly ended with re-arranging the words, but not improved the sentences. They are what they are.

I did not intend to writing a blog. It began with one Facebook post, so that I could tell a story. Then I began writing notes for myself. Some may find the development process interesting. Some those who experienced this battle with the communication and the expression will found it useful.

A “blog” is not a conventional blog. I have reversed the order of the posts. Unusually, the blog posts are ordered consecutively. Any newer posts are found at the at the bottom. So I guess it is not a blog. The published dates should be ignored; the dates are in the post title.

About a month after I had the stroke, while spending a couple of days just beyond the city limits of Cincinnati, I watched four or five raptors circling above the Club World Championships Ultimate Frisbee fields. As I pointed out the birds, I asked a young volunteer: “What are those fish up there?” I heard my words as I said it.

That was an uninvited cameo.

Northern Hawk Owl, Finnish: Or could it be a fish?

 

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1. The Stroke: 21 June 2018

Posted on Facebook after my stroke of 17 June:

I’m very aware that I’ve not yet regained vocabularies. My grammar is discombobulated. Like seriously disorganized of patterns of words. What grammar scars what they still have. Such as it’s as it I can do best: hopefully it will improve over time. By the story right now is all what grammar I all I have. I’m inspired by the Facebook post by my courageous and dearest my friend Brett Myrdal last week.

On Sunday, about 4 pm, I was preparing for taking the boat out of the river. In the boat -house I was sweeping the floor and trying to balance the paddles on the gum poles on the ceiling. Stretching to reach higher. As I stretched on my toes, suddenly the paddles crash to the floors. I tried to work out I’d dropped. I looked down and see my right arm: useless, limp, hanging down to the front of in front of me. I couldn’t work out how could this could happened? It was a shock. Suddenly I feel to fall into an  abyss. I staggered out before the large doors, holding my arm, loudly shouting: “Paula, help me”. Paula and John’s brother ran to be assist. I collapse a few minutes on the ground, then taken Paula taken to the bed. Immediate the words were erased. I knew that immediately. I also couldn’t understand any of the heard. I think I knew, in confusion of the bewilderment: I already knew it was a stroke. Paula drove to Riversdal, 40 km away. Waiting there in the Riversdal hospital, sitting on the bed, feeling nauseous, with a plastic bowl and covered with plastic sheet (so that I didn’t dirty the bowl). After 2 hours a doctor shrugged I was sent to Mossel Bay, about 90 minutes drive, to the private hospital.

A Mossel Bay private hospital with a sunrise bay view, in contrast to the cemetery view that public hospitals provide.

While I slept off and out, I had still had some thoughts. I first noted that wanted to see the TED of an anatomist who described an experience why as having it a stroke (Bridget independently referred to Jill Bolte Taylor yesterday). Second I decided that I need to not to drink alcohol, because I need to my mind as sharp as it needs to be. Third, I wanted to refill I’d most so much has been discharged from my mind.

Paula would be there next to my bed, then I slept somewhere else in the hospital, not sure where, probably uncomfortable. In the morning I awoke, with no vocab, and no names. I need to need to find some to expand my brain with fill some things and people, desperately. I couldn’t it couldn’t have to have a void. I borrowed a pen, and there was Die Burger. I began to start. Slowly, I squeezed a few names: it took me a while I could remember Paula. Then it took some a while: I could Josh, then some more minutes, then Dylan Giffard. That was more difficult because be more Lucy I couldn’t it, because I use a short name, not full name. And then even more complicated, she also has two names. The first 6 or 7 family names, then it got accelerated. Our extended family, friends, then some colleagues, then some cars I knew. Then a few others the “river”, the Breede, etc. As I began, my process begin more lubricated, as my brain just seemed to expand and expand. I somehow I knew I would be getting better, not as before, but be better than I am.

CT scan snaps

My single CT scan images.

The MRI, terrifying in a tube, wrapped by my head, with loud loud banging for a few minutes. I desperately not to moving. So wanting to get a clear image, so it would help, and I didn’t want to have another imaging. I slept a lot, many hours. No eating. Just water.

In late afternoon, Paula, Dylan and Lucy visited. I was first linked a few words, not really proper sentences. But still better.

The doctor, the psychiatrist (I think), the speech therapist. They ask me to repeat: the cat sat on the mat. And: the clouds are racing across the sky. I don’t hear it. I think I can hear what I hearing. But I don’t. The words wants to hear this something. Maybe I don’t hear anything: the words arrives in my ears covered to cotton wool and it didn’t get into the brain. I shrug. Helpless. I really want to understand. But I’m helpless. If Paula she tells me a word. Sometimes I just couldn’t heard it. So she writes it down. Then I can say repeat it. If so I repeated a few times.  Then when I repeated what I said, I can heard Paula this time. By saying do it repeating, it creates a little place or the word in my brain that it lives there again. Then I can hear again. Not always, but very often.

We left on Wednesday, travelling from Mossel Bay to home. Driving Paula. We talk while we drove, in a beautiful landscape. My sentences got better. The words filled more and more in the space in my brain. I found new words, dragging few and few as I need searching what I need to express.

I arrived in Kalk Bay, later afternoon. I immediately how to see if I can do a spreadsheet. I’d been working on also expanding in my brain unused spaces, to work out whether they’d been doing logical processes. I was relieved that I was available to draw Excel graphs that I’d been working on the weekend, just before the stroke. So this spreadsheet was a bit creaky, but I managed a new graphs with the dam as the water fills up. It was a relief. (I think they’d still weren’t the cool the graph on the dam comparisons: I’m insisted they’d better than all the online dam graphs.)

So it feels like the mind seems going working. Somehow with improves. Still most difficult: I can’t hear many of the words linked together. Sometimes the words I almost not heard by the brain. I can’t find words, my sentence construction and grammar is problem its always all deurmekaar. Perhaps repeats, words and concepts too. I know they’re wrong, and I’d least I can they look odd, but I hope you understand. And soon, I’d look at my constructions, and in a few months later I’ll look at a smile a bit.

Some better news today. I saw a neurologist this morning. There were no problem spots seen on the brain on the MRI. He thinks I’m generally fit, and can even go swimming and walking and running. (Sadly not any a special beneficial for warm seawater, but I look forward to it.) Doctor says that we should get back to my user self. It will take some time, at least a month off break (who knows), a lot of sleep and some help with a speech therapist. Perhaps some other therapist types too, while I am plan to see an artist therapist maybe, to tie to link my two brain hemispheres better. The soon I get to un-mangle the language the better. Vavi, I mean viva!!

I read all the Facebookers messages as while I travelled in the car yesterday. Thanks for all.

1a. Pre-notes #a: Tuesday 19 June

These are the notes wrote 36 hours after I arrived in the Mossel Bay hospital. My memory is that I thought it would make sense if I tried to write…

Tuesday 9 am

So it was a stroke. It might not have been according what it was a stroke. I can remember the word – it wasn’t a few a concept.

I know that there’s always there still. It still there is. It is still there, just veiled off in always in there. The arrangements doesn’t have been made logical. The words are start between pierce through the mists. If I keep trying the words, if helps it can do it exactly and exactly.

I think it may it’s be okay. I think it – before I start to writing – that it may be logical. When I try to start writing, the logical then needed to be not logical.

The mist just what not covered by my thoughts and words. It more than a thick soup – not mist. The soup cannot allow my thoughts and words – and strangle in the thick soup.

A read a sentence – all that a sentence – just seem a seemingful a sentence – but a content pin always its maybe meaning.

I know that there is remembers that in all my brain. I know the memory of my them. It is always with the complex things to do – and I do out prison complexes; for reporting, and outcomes-based processes. It’s just not a jam of a jar, with  a muslin top-covering, not a metal cap covered it.

Every sentence is not hard. I know if it makes it perfect logical – but not its not.

I think it more more meaningful it may I talk, not keep writing.

2. Early notes #1: Sunday 24 June 2018

Still not to a week since my stroke, still a few more hours still, 3 hours.

I have to put it in bullet points, because there is still many points:

1. When I remember all my names in Die Burger, I work from the more immediate, and further furtherbacks. I could first remember the people at the previous day. Then the weekend, then the previous the week, then the last two yesterday. I slowly slowly expanded firstly backwards from the zero up to day.
2. It is not the words that are just not re-hearded. It is not a series of hearing. It is also when you read a sentence, you learn to see a whole phrase or sentence, and also not the shape of a word, not a spelling of a word. So when I hear it is similar: when you hear someone talking, you not hear a series of separate words, rather you hear a phrase. You recognise a phrase. This means when it is much more complex than a series of words. It’s hard for the brain to absorb the entire phrase.
3. The words and phrases start to create more forming, more solid. It starts empty word, then it starts to a word that has greying, even little dots, then creating more solid font, as it becomes I think, I think, it heard the words or phrases, but I think I’m sure, but not quite sure, but then I think they ask me: how old I am? And I said I’m 57. Hang on… what did you ask me? Is that what you ask me?
4. It has realised only today that my instinctive was what my solitary confinement, and turned into the prison diary. I managed to steal a pen to record my experience, since 30 years and a few months ago. Somehow I used my instinctive using a newspaper edges of the white paper, this time to use the newspaper, just used it my bible. I sense that the best need to do is write some words in ink, that I can remind myself.
5. One of the reminder that I have what is probably the TIA. I wrote about it. It meant that I was remembering my experience during the first hours soon after the stroke, during the Sunday night. I was in a meeting on 16 May. I was facilitating a meeting between a group of a clients and also the service providers. Most of happening quite an informal discussion between the others. Suddenly, I didn’t know who the other people are. And not knowing what the project was discussing was it about. I tried to work it out: eventually In about 10 minutes, I managed to work it out. I manage to remember and get through the etc etc

3. Early notes #2: 25 June

1. Lucy suggested I read Herman Charles Bosman. I selected a short story. I tried to find a short short story. They are all the same length. I decided on the Gramaphone. It was only five pages. It was hard work to get to the 5 pages. I had to work through about 4 or 5 phases.But I found that I could understand the general meaning, even though it is not literal. Even before I was even near the end, I realised that he had killed his wife, even though it was literal. But it seems that it I have to focus on so hard, that I can only see the literal reading. HCB is not very literal at all. In a paragraph I had to read it a number of times. And I still not understand the nuance. He had met up with Krisjan Lemmer. He had assumed that he had assaulted a Mtosa chief, one with pride. I understand this because he had to pay a very large fine. I tried to find the clue. Surely it clearly it would be obvious. But I vain searched. Eventually I asked Paula, why was the narrative instrument which I’m missing. She then said to it was that the Mtosa chief that he was walking during a stick. So I said to Paula, so one man may be walk with a stick. So, I said to Paula, what’s the point? Why wouldn’t he just walk with a stick? Eventually I realised. I got the meaning, after reading the first few sentences, over and over. I have to focus and concentrate to hard that I look for the literal. And it so beautifully that is unstated. It’s going to be a while until I get to reading to be able to focus with less than grinding But at least I understand what I’ve missing. And I’m again so about that is Bosman short story so it is blown away.
2. I also think that all these books, movies, narratives, (maybe even if my own history), are veiled beyond in my recesses my brain. I know of them, they are intact, but I can’t easily access them. I have placed Bosman on the accessible on this side of the veil. Weirdly, there is only one story on this veil of my brain. Lucy began to talk about a story, which I knew the stories and the characters, but I couldn’t understand them against the context. It’s all far too background, beyond my veil. So Bosman is the only story that is so accessible of the brain, as it is only story I have it is so vivid. (The other story about the Bolte Taylor too: I find it difficult to understand the first 5 minutes of the theoretical ).
3. The stories are not alive. It’s there in the brain, but beyond all these stories are beyond a veil. They hibernating. They need to bring their lives back to make them alife again. Each bit that is beyond the veil, and I need it bit about peicies, and bits and data needs to be activate it, I need to turn it on like a switch. Then I can access it. But it is possible to switch it on and operationise in order to make it bring alive and engage with the thinking about it all that is long behind the veil. Then perhaps it can bring it into on the closer (not recesses) of the brain, so that I can access it when I needed it.

4. Stories of three strokes: 15 July 2018

My first memory – the first piece: 21 June Thursday:

On Sunday, about 4 pm, I was preparing for taking the boat out of the river. In the boat -house I was sweeping the floor and trying to balance the paddles on the gum poles on the ceiling. Stretching to reach higher. As I stretched on my toes, suddenly the paddles crash to the floors. I tried to work out I’d dropped. I looked down and see my right arm: useless, limp, hanging down to the front of in front of me. I couldn’t work out how could this could happened? It was a shock. Suddenly I feel to fall into an  abyss. I staggered out before the large doors, holding my arm, loudly shouting: “Paula, help me”. Paula and John’s brother ran to be assist. I collapse a few minutes on the ground, then taken Paula taken to the bed. Immediate the words were erased. I knew that immediately. I also couldn’t understand any of the heard. I think I knew, in confusion of the bewilderment: I already knew it was a stroke. Paula drove to Riversdal, 40 km away. Waiting there in the Riversdal hospital, sitting on the bed, feeling nauseous, with a plastic bowl and covered with plastic sheet (so that I didn’t dirty the bowl). After 2 hours a doctor shrugged I was sent to Mossel Bay, about 90 minutes drive, to the private hospital.

26 June: Tuesday 16:30

It’s now nine days after my stroke. I plan to write about again, trying to remember now what happen.

It was Sunday afternoon. Paula and Mary had gone for a walk with the three dogs towards the other river houses. I was talking with John on the stoep. I knew that the high tide was about 7pm so I decided to prepare for getting to take the boat out the river. I wanted to prepare just so ready as high as I could, just while there was still light to see what I was able. I went to get the motor stand in the right place, and got the hosepipe to next to where the boat was to park there. I swept some of the sand that has been on the floor. Then I noticed that the kayak paddles, which were looking in what I thought was out of place. I decided to the paddles balance on the gum poles, above the head. I stretch up, just needing to on my tiptoes. And then suddenly the paddles fall next to me, wondered why I dropped them. I looked down and saw my right arm, useless, limp. It was terrifying for me to see it. I assume at the same moment, there was absolutely no thinking, no clarity. Just a devoid. I did see Paula was just approaching the end of the walk. I grabbed my arm, walking (staggering) to out the garage doors, shouting “Paula, help me”. I was aware that John was there. I saw Paula running out and holding me, I think helping me to sit. My arm was returning to my feeling. But I couldn’t talk….

15 July: My memories of my stroke

Paula and I had spent the longer weekend at Vermaaklikheid. Mary and John had joined us on Friday. It was a slower weekend. There were no boats on the river. It was a mild weekend, but we made an indoor fire. We had planned to leave on the Monday. Knowing that high tide would be at about 7pm on Sunday, I wanted to pulled the boat out of the river in the later afternoon, as high as possible, but also still sufficient light to do the packing of the motor, etc. Paula and Mary had gone a short walk with the dogs. I set up the hose pipe, and that decided to sweep some of the powdery sand. I noticed that the paddles were leaned onto what was adding to the trestle table, rolled carpet, and some planks. I decided to move the paddles to rather balance them onto the gumpoles, above my head. It was just too short to easily balance them onto the poles. I was standing on my toes, reaching as high as a I could. The paddles fell to the ground, making a crash. If it was silence, I perhaps had heard a stroke happening. I don’t know what I would have heard, if anything.

The paddles fell. I looked up to see how they how I’d dropped them. The arm I was stretching it up, was gone. Suddenly the arm had disappeared. It was a moment of incredulous and alarm: how was it no longer there. I looked down. There was an arm dangling next to my side, swinging from my way to another. I knew I was in trouble. I grabbed the arm with the left arm, alien, such holding an inanimate object.

I walked, staggered perhaps, to the garage open door. I could see, perhaps 60 metres away, returning from Paula and Mary. I shouted, loudly, “Paula, help me”. It was loud enough: John heard him from the stoep, and gone there before me. I could see Paula running up towards me. She supported me, assisting me to sit on something had provided for me to sit. I was assessing the arm. I can begin to the return of it’s feeling. I don’t know how long I rest before Paula help me through to the bed. My words had left it. I think I knew something monumental had happened. I knew the mind has changed in some way. And that we began the travel to the Riversdale Hospital, and then ongoing to Mossel Bay.

5. Cincinnati: Friday 20 July 2018

I’m feeling quite anxious. Yesterday and again today, I’m struggling to read, both from lighter political news articles, and also the Bolte Taylor book. I find it alarming, because I was hoping that it was a linear improvement. I never did that expecting. I hope it was just a bip in the process. Perhaps it’s because I’ve had a few days, of more than anxiety than I thought it would be. If it is also the few nights that I have spend alone time. Also I have had to drive. The concentration is extreme. I was relieved to be park back at the rental car garages

I have also make it more difficult to hear to absorb the language, between the ears and the brain. I don’t know if it is the hard extra work for a Ohio accent, the speed of the language. Or if I’m just so tired? That or trying to more difficult? Or have something goes wrong, and I have lost something I have learnt or advanced in the next few days or weeks?

Perhaps I need to slow down, to trying not to hard such something. I need to sleep when I want to, and when I schedule to try to sleep. Just rest. Slowly. Not fighting against not turning off, when people are engaged. I need to switch off when I need to. When I have to. I explained it before, so people understand we begin to talk.

I do feel that I feel in a cloud. It is a familiar mist, that has cleared up. And it is back in a misty. That it is now a rainy, stormy clouds, that swept in hour and (hopefully) that they clear away too. With less some of in left in some more clarity and lucidity. I hope. That it doesn’t remain behind. Or that what has I’d recover, and I’d know been so permanently lost. That would be really scary.

6. Back in New York City: Monday 23 July

I wrote that after my meal at the Australian restaurant, in Cincinnati. I felt that is foggy, even more than misty. I began to try harder to read slowly, not too much pressure. And then it began to making sense. Slowly. It was a delayed flight, and it was adding the pressure. There were other passengers, hearing voices, some loudly, some on phones. It was always distracting. Nevertheless I didn’t even think about plugging into the music. I didn’t want covering over the noise. I wanted it to be quiet. When we got onto the plane, the immediate passengers began to talk between the two of you. Most of the time of the 90 minutes. Still, I managed to read on the plane. I complete the Insight Stroke article, and began to read about the David Eagleman Brain book I finally got to Sue’s apartment at 1 am. I did my best to do Zen. Mostly it really worked. I was exhausted.

But the fog had lifted. It was able to read properly. It was back on the improvement. I’m starting to understanding (after some of watched a bit of the Eagleman TV programme) that the exhaustion, the fog, is so debilitating. I was driving on the right side of the roads, for 3 days. As I took a long route to the airport, to avoid Cincinnati downtown, so that I drove probably 90 minutes. Constantly, my brain was conscious about where I should be driving. Always. My brain is delicate, tired, and when I’m driving, I can’t stop, I can’t relax. It’s constantly focus; I cannot rest in the way I can decide when as if I am home. The fog is bringing into my world. I know that I need to relax, so that I can defend away from the fog. I need to plan my life at the moment, so that I can sleep. The exhaustion brings my focus, the stress, but it also the physical exhaustion that brings it to me.

The last thing right now, is the exhaustion that bring knocks me out, lying on my back, usually in the evening. For me it has sometimes bring a scary sleep. I feel like that I bring inside a black hole, not being able to have any conscious. It’s as if I am falling into a black hole that I fear that I may not return. I don’t know what that is. I don’t know where I am, or when it may comes. But I really not like to be there.

Perhaps the one to deal with is that I try avoid so that I fall into the exhaustion. Perhaps the black hole returns.

8. Neurologist’s waiting room: 30 July

Two nights I watched The Brain: David Eagleman (and another last month, a second). Even though I had read the chapter of the episode, and hadn’t seen the detail, I found it exhausting. I managed to watch till the 55 minutes. The last few minutes were difficult to absorb very much. When I afterwards, I felt that my brain was empty – nothing at all inside. Like a dementor had sucked the contents of the brain. If there was any that was left was hiding in the recesses, it was not possible to access them. Slowly the end of the episode. I was able to rest, and some of the population of the brain it was possible to rematerialize, and access again. I need to be able, when I realise that I know I’m tired. And I need to stop immediately.

9. During/after speech therapist: 3 August 2018:

A couple of days ago I realised that I can easily and distinguish real objects in my programme training: like shirts, shorts, fan, pen, toothbrush, car, bicycle. But I find it far more difficult to hear the abstract objects: like square, circle, arrow, triangle, and striped and block, etc. Second, I had begun to think I had done very well, because I was able to listen to the Audible on the Lord of the Rings, for the first time without follow the written book as I listened. I was then confronted with some simple sentences that Helen. I struggled to hear, absorb, process from these sentences. This was much more difficult to process. I think I have known this, but I didn’t know in the same way, and with certainty, until I realised. The information/memory/familiar that is in the brain, is there. What is new is much more difficult to hear and process. So I read to listen to a audio book that is new. That will be the test for my ability to heard. But still: why is it so difficult to remember a statement like: “The mother will to go to the bank and then afterwards go to tea with your friends”?