What I've learned building free imagery practices for stroke survivors

Hi Jeremy, thanks, 

I really like your observation that: "It's something to do in the gaps those therapies can't reach."

Myself, I re-learned how to speak, read and write again at the age of 50+ by learning - for the first time - how to draw, and later, 55+, I re-learned primary school, arithmetic. Both activities weren't part of a stroke rehab program, but included in normal community education, for all. In other words, I had to join community in order to be part of it, and not wait for a miracle cure. This, after the methodologies practiced by my rehab practitioners failed not me but THEM. Basically, I re-learned to communicate coherently, again, by turning the affected side of my upper body (right) into a physical gyroscope, a lived-through mechanism to navigate/coordinate my brain and body across the three main classes of communication - this is what I did in the many hundreds of hours in the gap. And, from these self-devised practices, I developed the ideas of a Mosaic Brain that navigates a Passage through the gap of hours, to arrive at a process philosophy of stroke. I see a similar process of philosophising in the expressive writing on Enable Me.

John

Hi John, thank you for this — it's a genuinely useful correction.

You went and found teaching that had nothing to do with stroke at all — learning to draw, learning arithmetic — and built your own coordination system out of it. Nobody handed you that. The literature I work from can tell you that imagining a movement activates some of the same circuits as doing it. It has no account of what you actually built across those hundreds of hours, or why drawing and arithmetic were the right materials for it.

I don't think "the gaps those therapies can't reach" was quite right either — it makes it sound like a space waiting to be filled by the right program. What you're describing sounds more like something you had to go and build yourself, out of whatever was actually available to you.

I don't have a framework that explains the Mosaic Brain. What are the three classes of communication, in your framework? I'd like to understand it properly rather than guess at it.

Hi Jeremy, thank you,

The three classes of communication perhaps are more accurately described as modalities: speaking, reading and writing.

A Mosaic Brain, is one that accounts for the neurological gaps affected by brain damage, the increased negative space between functions as cell-death ricochets aroud the organ and down the stem; perhaps accounting for the more-than-usual lag I experienced between sensing and cognition hence forming a space where image might manifest new behaviours, such that a story about stroke might filter into more discrete passages.

Yes, you are correct, there is no right program to 'fill' the mosaic negative space. I chose drawing and arithmetic intuitively after experiencing the effect of the force-imbued steps of the hospital orderly on my blood flow as my bed was wheeled my from Emergency to the ICU (October 20, 2007). An attempt then was made to mimic the physical impressions left on my body by that particular hospital transfer thus "activit[ating] some of the same circuits" as trying to describe the transfer in speech and writing. 

John

AND: those circuits are triggered again when I read the expressive writing on Enable Me.

Hi Jeremy,

In 1993 as I lay alone waiting and wondering after my stroke I heard so many people talking in the corridor, in the shared room I was in. It seemed there needed to be a medical decision made before anything was possible.  That terrified my young injured but active brain. So I visualised air reaching down to my left toes, my left fingers, visualised my tounge moving, my throat swallowing, I visualised my lungs expanding and exhaling, visualised me getting up and out of bed. I looked outside and tried to count bricks, see shapes in clouds. ANYTHING!! 

I visualised many scenarios all my mind work was a therapy in itself. I still visualise and meditate -  there are always mixed reviews on whether or not this all works; it's all down to one's own experiences or course, and in my experience it works.

LOOK AGAIN

What looked like silence

Was an endless internal scream

What looked like willingness

Was my submissions, my surrender

What looked like positivity

Was my desperation for hope

What looked like impatience

Was fear that my basic needs were not being met

What looked like social or non social cues

Was my thirst for company, my rebellion against isolation

What looked like fight, fright or freeze

Was me protecting myself against the imbalance of power

What looked like sadness

Was intense grief

What you called rehab

I called a place of punishment

What you called goals

I called ongoing visions of my future life

What you called data entry

I called my treasured life.

Look again.

All the best

Nina

Hi John, thank you — that's clearer, and modalities is the better word.

Let me say back what I think you're describing, so you can tell me where I've got it wrong.

You felt the orderly's footsteps coming up through the bed and into your body on the way to ICU — rhythm and force, arriving from outside while you could do nothing. That left a physical residue. Then you tried to copy it. Drawing gives you rhythm and pressure through the hand; arithmetic gives you sequence and a steady beat. Copying that pattern ran through the same circuits as describing the transfer in speech and writing would have. So you got back into speaking, reading and writing through a door that wasn't language at all.

Against what I build: we're both working with something other than the affected movement, and both betting that one channel does something for another. But my practices ask a person to rehearse a movement they intend to make — deliberate, forward-facing, someone else's voice guiding it. Yours went the other way. You re-enacted something done to you, unchosen, and arrived at language sideways. Nobody guided it.

Four things I've taken from that, none of which I'd have got to on my own:

The starting point can be what the body kept, not what the person intends.

The material doesn't have to resemble the goal — drawing looks nothing like speech. What they shared was rhythm and pressure.

You found your own material, in your own history. Imagery protocols, mine included, hand people a script.

Re-enacting something received may be a different operation from rehearsing something intended. I only do the second.

Have I read that right? Does this go beyond stroke, in your view?

Jeremy

Hi Nina,

Nobody would tell you anything, so you went and did it yourself. In 1993, in a bed, waiting. Air down to your toes, your tongue moving, your lungs. Counting bricks when nothing else was left. That's not a small thing and it wasn't given to you.

Thirty-three years and you're still doing it. That's the part that stops me.

Your poem — "what you called data entry, I called my treasured life" — I'll be sitting with that one for a while. I build things for people in rehabilitation. It's a fair question whether what I make would have reached you or just been another thing handed down.

Thank you for the answer, and for the poem.

Jeremy

Hi Jeremy,

My poetry I know is raw, I wrote that piece in about 2017, finding Enable me in 2016 was a like a release valve on so much unresolved grief from my stroke and the other circumstances that surrounded it. There was alot of loss and alot of pushing me and that led to alot of emotion. I can feel myself freeze in those circumstances and see the therapist with their clipboard and pen making notes.  I always wanted to know what notes they were making, it was all so alienating.

I was a young grieving bereaved mother and I didn't connect to anything that gave me a sense of comfort for those reasons. Lots of women's work in recent years has helped, womb healing, yin yoga, art. The buzziness, fuzziness and fire in my head that I remember from 1993 can still be soothed with the right attention. 

I went about my own rehab journey thinking about the one young woman I knew who'd had a stroke and gone on to live an active life - Patricia Neal who was a Hollywood Actress and also married to Roald Dahl the childrens author.  The reason I know about Patricia was that I had seen a movie about her in the six months prior to my stroke and in the movie after Patricia's stroke, Roald was told by Dr's that she would survive, but that he might wish she hadn't.  This narrative was etched in my mind as I tossed between being grateful to survive to feeling like such a burden on everyone.

Giving some context around my mention of grief and loss and isolation might help; there's more of course but I'll leave it there because the rest is quite heavy:)

Nina

Hi Nina, Jeremy, colleagues-in-stroke,

Nina,

First, I’d like to echo Jeremy’s response, “sitting with” to your poem; (posted 13/09/26, 13:56 on Enable Me); the gap you articulate appears devastating and unreconcilable.

Some months after my discharge (in May 2008), I returned to the hospital (voluntarily) to request from the supervising medical authority a copy of the hand-written notes made by the clinical team observing my ‘progress’ through the hospital system. At a time of growing competence when I was able to decipher the handwriting, I found the clinical observations, particularly in the Stroke Unit (06/11/07 – 21/11/07), illuminating.

Had it not been for an alternative observation a record of mistaken cognitive impairment would likely have followed me throughout my rehab and beyond. Thankfully, a senior clinician amended the record after observing me demonstrate learning. What I learned from my early stroke experience, as observed by others, is that the scientific record can be just as dynamic as the survivors’ journey, and that insight was not confined to a medical black-box.

Jeremy,

You are basically correct in your assessment of my activities. There appears to be a different operation beyond rehearsal, for example, as in the case above in the stroke Unit, with a focus on the unintentional haptic performance of language (biting into a tree root) such that rehab arrives at its goal SIDEWAYS by following poststroke physical residue. This is what a poststroke inquiry is all about, perhaps.

Another Enable Me writer, Sophia Anna-Faria (22/07/26), summed-up the sideways glance in a stroke metaphor: it is as if one is running a decades-old Word app on a brand-new computer. The problem, it seems, is not about the intentional cognitive skill of navigation but the misappropriation of the taken-for-granted (pre-navigational) capacity to orientate. How often do we set up a Word document to express our thinking without conscious consideration for whether we think in portrait or landscape. Between these cognitive templates is then, perhaps, the sideways glance.

John

Hi John,

The clinical notes story is remarkable — that the record itself changed because someone was actually watching, rather than the note simply being wrong and staying wrong. That says something about attention that I don't think either of us has said yet.

I want to go back to something you dropped in without explaining it: biting into a tree root, as an example of unintentional haptic performance of language. I don't have a picture of what that actually looked like for you. Was that something from your own recovery? What were you doing, and what did it end up doing for you?

Jeremy

Hi Jeremy, Nina, Daniele, colleagues-in-stroke.

Forgive my prolixity:

Yes, my record was amended about two hours after the initial observation was made by a speech pathologist. The amendment was later confirmed by another entry into the dossier by a Stoke Unit nurse on her scheduled rounds. Whilst recording and attending to patient vital signs, she entered incidental observations of my speech to the record. I’d be none-the-wiser had I not sought my record because no other hospital, primary or allied-health care worker informed me.

In hospital, patients are expected to submit to scientific processes despite those same processes being rigorously contested by members of the care team. In other words, there is no expectation for patient intelligence other than to follow what is diagnostically prescribed. But every now and then the scientific treatment ecology needs to acknowledge its own catastrophic disruption such that the synthetic TIMELESS amalgam of criticality, separation, and diagnosis, itself must be recovered by time. If not by its active members, then by its objects: for example, the patients’ in-stroke “residue.”

The British medical system has, in the last few years, acknowledges the capacity of patient residue to change care from within, by validating the therapeutic value of community-based performance arts in neurological recovery (you might like to Google “Rosetta Life,” London). The British initiative appears to make efforts to redress bureaucratic oversight to patient ignorance by focusing, instead, on the extraordinary aesthetic performance (hence communicative) possibilities, even for able-bodied participants. I’ve yet to encounter such an initiative in Australia.

This shift, however, is, as I perceive it, already underway in Enable Me, in Nina’s poetry, for example, and Daniele’s behavioural experimentation. Another contributor of the shift is Sophia Anna-Faria (Enable Me, 22/07/26, page 4 of the website, I think), and it is from her writing I’ll attempt to answer your query here.

Sophia writes about the PTSD of reliving dying: a gap apprehended but barely articulable. The postmodern French philosopher, Jean-Francois Lyotard has a name for this kind of experience, the differend, apprehending an idiom which has not-yet assumed a place in common vocabulary – even as the experience hastens its enunciation (1983/1998, p. 13).

Sophia then writes about “a heavy pervasive fatigue that settles over my brain,” and that, “I know exactly what I’m trying to say but the word won’t come out.”

This is an apt description of a stroke symptom I tried to make into a metaphor (like biting into a tree root). What I'm trying to express metaphorically is the joy in trying to articulate the differend, through all its sensorimotor resistance extending intentional communication into the haptic performance of communication. What gave me the greatest joy in the Stroke Unit despite the misery of brain damage, was the sensory stimulation of chomping, like a satisfied ruminant in a grassy field, on my own utterances - until I got them right. And this action was the content of the record amendment, it was proof that I not only had the capacity to repeat, but to learn. This went on for some years until I combined other actions in the upper body to coordinate the whole suite of communicative competence.

Since then (about 2016), I’ve sought to philosophise on the in-stroke residues (performative value of stroke; passages); and while British medicine is making a serious attempt towards such an initiative, thus far, and in my limited exposure to the stroke community, Nina, Sophia, and Daniele (and Chris Lassig), Brian, and now you, are making active, if not conceptual inroads towards it.

Reference

Lyotard, J-F. (1983/1988). The Differend: Phrases in Dispute.

Hi John,

Let me see if I have it. The system expects patients to comply, not to contribute. But your record changed because two people — a speech pathologist, then a nurse doing her rounds — noticed something neither had been assigned to look for. And what they noticed wasn't a prescribed drill. It was you chewing at a sound until it came out right. That physical repetition, the thing you'd call in-stroke residue, was what finally made your capacity to learn legible to the people writing the notes. Not because anyone designed it, and not because anyone asked you for it.

The part I can't get past is the joy. You describe chomping on your own utterances as the greatest joy available to you in the Stroke Unit, in the middle of what you're plain about being misery. That's not incidental, is it. My practices have people rehearse movements they intend to make, and there's nothing pleasurable about them — they're work you do because you've been told it helps. Whatever you were doing, you were doing because it felt good.

So: was the joy the point? Not a side effect of finding the sound, but the thing that kept you at it for hours before anyone noticed — and the reason it worked when the prescribed methodologies didn't?

Jeremy

Hi John,

Your response was well considered about the consequences surrounding my stroke - not many people understand how to sit with the devastation and as you wrote on the 14/9 in rep;y "devastating and unreconcilable" .

I was quickly directed into the gratitude to have survived and that meant somehow carrying the "devastating and unreconcilable" consequences silently.  To have another stroke survivor say that to me makes a world of difference. To be given permission to say yes to that weight without it destroying me, sitting with what's unreconcilable. 

Thank you

Nina

Hi Nina, Jeremy, et al.,

Yes, Jeremy,

Despite also experiencing a level of PTSD, as Sophia describes, the sensory and cognitive pleasure of chomping, digesting and metabolising residue, in order to produce new kinetic energy, is what, I think, motivated the senior clinican to observe and amend the record, "Aphasia persists, maybe a little improved. He [patient] is aware of mistakes, and tries to correct them" (NSW Health, 08/11/2007: 1435 hours). And, yes, I think you're right, this wasn't incidental on part, but was an incidental obseravation by a later nurse on her scheduled rounds recording in her notes the ward's patients' vital signs. From the notes I later procured from the hospital (about six-months after discharge) I could validate my own recovering behaviours which prior where recorded at evidence only of cognitive impairment. Learning was happening through the 'chomping' and that was accompanied with the feeling of joy: it is something that goes beyond the binary categories of optimism or pessimism and into the experiential realm of absurdity explored by writers such as Albert Camus, Samuel Beckett and Antonin Artuad. As Nina above writes, it is the ability to sit with the unreconcialble.

John

One year in the making I see. This is what I have been doing .watching on social media on blogs anywhere I could find Something to help it works I see the progresses but somehow the injured brain seems to have a very moody memory if sick my brain forgets even during rehabilitation then when feeling good it fires up again the progress are faster taking me back to the starting point before the sickness 10 steps forward 9 backwards

Hi Daniele,

Ten forward, nine back. That's the first time anyone's put it to me that way, and it's not how the research talks about it at all — the studies show a line going up, not a thing that forgets when you're sick and comes back when you're well.

The part that stays with me is that you kept looking. Social media, blogs, anywhere you could find something. Nobody handed you a programme either.

Does the coming back get faster each time, or is it about the same?

Jeremy

Hi Jeremy, colleages-in-stroke

I woke very early this morning (3.30am) to an interesting documentary item on radio 4, BBC, on the discovery of a new organ in the human body, described by the reporter as: "The Ocean Within us," or, as bio-medical scientists are calling it: "The Interstitium." Have you heard of this term before?

John

Hi John,

Most interesting. I had not heard about the Interstitium System. After some reading I was able to learn that there is more liquid connecting bodily tissue than science had been led to believe. In the brain there's a related system — the glymphatic — that moves fluid through and clears waste, and it runs hardest during sleep. Helps bridge the gap in the Mosaic Brain?

Jeremy 

Yes, Hi Jeremy,

From what I recall from the BBC reporter commentary (I'm slowly reading through the 2018 Scientific American article that broke the news of the discovery of the Interstitium), the so called Ocean Within carries molecular information so that nodes of function are visited by functional information washed up from less contingent regions, so that there is not just an electical wiring system of information processing but also a haphazard  "castaway" information flow from un-associated functions. Yes, in a stroke-marked Mosaic Brain I'm wondering if a pattern might be discerned in the castaway encroachments, not just the electrical pulses. My hypothesis is that the castaway molecules apply some kind of pre-navigational orienting-like behaviours; the kind alluded to in Sophia's article and expressed in Nina's insistence of writing, and Daniele's experiements. although the Interstitium may be new in science, the idea of an interstitial passage, the stuff in-between, is common place in the critical humanities, like critical disability studies. That's why I don't refer to my recovery efforts as a story - just passages. I'm still working on it.

Hi Jeremy,

may I reference own conversation above regarding the Interstitium in an up-and-coming blog I'm preparing to publish on EnableMe?