Brain Health

Neurodoc Chronicles: Reading Rehab and Unheard Brain Injury Grief

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I emailed my neurodoc a long time ago a tweet about what reading means to me. He’d repeatedly said my emails were important; he understood they were my way of communicating what I needed to talk about during our sessions. He printed, signed, filed it. And he wonders why he isn’t succeeding with me.


As far as my neurodoc seems concerned, drugs and the DSM are the only answers. Using newer communication methods is, well, he’s not going to do it. Learning about 21st-century discoveries of the brain and brain injury aren’t actually to be acted upon. Working in a Toronto teaching hospital, one can’t be too forward thinking, y’know. After all his ABI expert colleague didn’t want to burden his brain with 20+-year-old knowledge of thermoregulation. Better to tell the patient to get on with their life than help them. But I digress.

Let me help my neurodoc figure out what to do.

He could’ve printed out that poster. At our session immediately following me sending that email, he could’ve shown me the poster and read it out to me then asked: “Tell me how you feel or what you’re thinking as I read that out to you?” I probably would’ve bumbled around or resented being asked how I feel since half the time back then I had no clue. So then he could’ve brought up each pictogram, maybe mused about what he thought, and drawn me into a discussion. That at least would’ve started my thinking. It would’ve brought up memories. And memories would’ve dragged up emotions and the grief — over time. Doing that only for one session would’ve stopped the process of my broken brain remembering, reconnecting memories to emotions, processing the grief. Sticking to that topic over the next few sessions would’ve continued that process. But, y’know, email.

My futile attempt at communicating some deep, hidden-to-my-conscious mind emotion I could barely talk about all began with an email. And since the Ontario government won’t pay for emails and Canadian physicians think emails are the devil’s work or way too innovative or something like that, my grief over losing my reading went unheard. This was one of many attempts I made to get reading rehab going, to have my grief over losing the core of my identity being heard. Telling him that being a reader who inhaled books like opium — well, that went unheard, ignored, dismissed, shut down, year in and year out while I dragged him like a dead weight to help me rehab my reading, one agonizing step at a time, with rising hope as I glacially made progress only for him to “forget” the rehab, forcing me to remind, nag, beg to resume again. I’ve put my neurodoc on hiatus. The emotional cost of reading rehab is no longer worth it.

Brain Health

Brain Injury Grief: The Experts Begin to Recognize and Define this Profound Loss

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The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.

Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”

I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.

Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”

I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?

She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”

I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.

Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…

“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.

“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”

Brain Power

Eyes Sharpening

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Union Station Toronto ColumnsIt’s a gusty day, clouds billowing up on each other, stretching apart to reveal dark patches of blue sky and let the sunlight through. Once again this week, I’m standing on the sidewalk, against the wind, staring down down down the street, all the way to the third traffic light in the distance. Red red red green. Or is that the fourth traffic light I can see to?

How is this happening? Seeing more depthlike depth in distance objects was weird. And wonderful. Seeing the whole of a computer display in one go was oh so nice. But now with another new improvement, I’m boggling. How is this possible?

My brain is adapting. A bit unsteady at sudden moments. Back to staring and taking in buildings, people, signs, colour nuances on the Royal York hotel stones, details in bricks, Union Station’s warmth and richness of colour, before I can feel my brain release and I can continue to walk.

Brain Power

Reading Rehab: Big Picture Begins to Return

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River in Kluane National Park between mountainsLast Monday brought a surprise — in the neverending river of reading rehab, I connected the elements in a chart in the book I was reading with my mother to the succeeding paragraphs. I could see automatically how they connected. Maybe this uptick in reading cognition happened because this is my fifth time reading this book — the second time reading it out loud with another person — but it’s probably also the reason I felt so nauseated last week. Any time I feel nausea and/or dizzy all the time, it’s usually because my brain is making those final neuronal connections (as I see it) to give me back what injury took and produce a sudden leap forward. I never know what the improvement will be until about a week later.

I can’t believe it’s in my reading!

I can’t believe it’s in the stubborn-no-I-won’t-see-the-big-picture area! To see automatically how one chapter flowed out of the previous, how sections tied in together on Monday was . . .

Whoa.

Previously it was either a conscious effort to see it or I just saw sections and chapters as silos, knowing they were connected but unable to see it. This deficit didn’t affect my recall. Instead, it created anxiety over the effort of reading, of perceiving “how does this all tie together‽”, the big picture of it all.

The big picture has always eluded me. I may sound like I see it when I recall what we’ve just read or recall the chapters read so far, in my reading work with my neurodoc, but what I see in my mind, how I understand the book is not as a whole unit, but rather as a series of silos or silos co-existing.

Or to put it another way, imagine building a little lego village. You place a brick on the flat green pad. Then another brick next to it. And another. Pretty soon you have a wall, then a house, then another building. And a tree. As you click in each lego piece, you see all of what you’re building and you can see it growing into a little village. That’s the big picture. Now imagine you can’t see the whole. You can only see part of the first building. Then that fades away as you see the tree you clicked in last. How can you see the village you created if all you can see are the south wall of the first house or the top of the tree or the roof of another building, in succession but not altogether?

Monday, those silos of views connected to each other. Awesome.

Unfortunately, being overwhelmed by events interferes with all my cognitions, especially new improvements like this one. So bit of a setback this week, but that should be temporary.

In a related area and in the weirdness department, that same Monday, I gained energy as I read out loud the last two paragraphs of the two pages we were reading. Gained? Gained‽ Reading makes me feel better but always fatigues me. How did I gain energy‽!!! Was that just a weird blip or a real improvement 18 years, two months, and five days after the crash that obliterated my novel reading like it was so much sand in the wind. I can’t recall how I felt after reading a book in my pre-injury life, it was so long ago now. I only recall disappearing into and becoming one with the world of a mystery novel and surfacing a couple of hours later, wondering where I was. Did I have more energy? Did I feel rested and re-energized afterward to go back to work? My mother tells me I was always full of energy. Hard to believe after almost two decades of unrelenting fatigue and eighteen years of having that reading in flow, reading to escape, reading to re-energize, taken from me. If this is the first spark that it might actually be returning, I know from past experience that it’s just a spark at this moment. Things like this work like a short circuit: old skill/ability sparks on, hope rises, improvement vanishes, hold on to hope, wait and wait, another spark, hold breath that it’ll stay, release as it doesn’t, another spark and one that lasts longer, and so it goes until at last the short circuit is a whole circuit once again.

But this weird 180 of my reading from injured ability to maybe my old normal is so tied in to the grief of my loss, I dare not hope. Yet there it beats like soft feathery wings deep inside me.

Brain Health

Let Me Eat Cake

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Slice of carrot cake

There are days when the only remedy is a slice of cake . . . maybe a whole cake. Well, OK, even in my lowest moments, I can’t eat that much!

It’s March Break when students get a week or two off from the hard mental work of school. It’s predictable and reliable, that time off. Once you hit adulthood and full-time work (contract, part-times pieced together, or old-fashioned kind), vacations need to be thought out, booked, dates negotiated with the boss and/or co-workers . . . unless you’re a health care professional, especially physician. Then no juggling, just decide, “I’m going to this conference, time to tack on a vacation.” And tell staff and patients or clients.

Or not.

I don’t know why it’s so difficult for my neurodoc to share this information weeks ahead instead of days ahead. Yeah, people with brain injury need notice, need enough time to absorb there will be a change in routine, enough time and reminders to remember to amend one’s schedule, enough time to be okay with the change. But the way I was raised, one just did these things: give people notice because it’s the polite and considerate thing to do. It’s socially mature.

But over the years, I learnt his out-of-town routine. And fed up this year with the way men manipulate women into nagging and begging for information to be shared, I just assumed it was the usual routine and rolled with it in my mind. Ha!

So I’m having cake and wondering when I get to take a vacation from my brain injury.

Brain Biofeedback

Vision Update: Seeing Farther

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Photos of new streetcar door jambs and enormous windows.Brief vision update here. I don’t want to jinx it, but for the last couple of weeks, my far-distance and panoramic vision seem to have stabilized. Does this mean my brain has stopped trying to shut down the firehose of new visual information that the surgery turned on? Does this mean it has ceded the battle and is coming to terms with both eyes working together and feeding more efficient data to the visual cortex?

My depth perception is still being integrated. I’ve discovered that reciting to myself over and over “integrate” as I step down each step actually integrates my proprioception (sensory information from my feet) and perception (sensory information from my eyes) and makes stepping down and knowing where I am on the staircase much much easier. Huh. This week I got to the landing and knew it without having to stop and check my feet and feel unsteady until I did. W00t!

I’m slowly adapting to the new streetcars. Because of the TTC’s systemic bias, they have created door jambs that have yellow paint not at the outside edge but behind the black bumper. Only the accessible door has no black bumper; still, the slope down and gradual grey edge makes it difficult for my brain to perceive what is streetcar and what is pavement. And for some reason, it’s also more difficult to discern how high the step is when getting on. The old streetcars with their white-painted edges are easier to step up into, though it’s still more challenging than regular stairs . . . maybe because they’re steep??

Anyway, I bang my cane down on the surface I want to step on to, and that tells my brain where my foot goes.

The large windows and sloping floor (why oh why did the streetcar designers think sloping floors are safe on a moving vehicle‽) can induce nausea in anyone, I’ve learnt. I suggested to a friend with a perfectly healthy brain that she sit in the accessible car where the floor is flat. Nausea solved for her. But for me, it’s the large moving landscape visible outside the enormous windows. I’m assuming this moving-scenery-induced nausea/dizzy will ease over time, and I’m seated anyway, so I won’t fall.

I was starting to get quite stressed over the thought that my new vision would reverse and my brain would revert to “default.” I’m heartened that the brain biofeedback, and perhaps the increased light levels on my audiovisual entrainment device to stimulate the retina, are enforcing the new vision.

Brain Power

Olympic Trials

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Footsteps on a snowy frozen waveIt didn’t take me long to get into the Olympic spirit, the trialling spirit. I say trialling because the stories — what some eschew, just get to the events already — is what makes the Olympics meaningful. Imagine working for four years towards one race watched by billions, training to improve, trying to avoid injury, fundraising to keep the training and competing going, to pay for equipment and coaches, and crashing out of the gate. Or being injured in the training or qualifying run. It’s rather like brain injury as a young adult — you’re working hard to establish your career, you’re building up networks, taking night courses to expand your expertise, you’re client-raising to keep your fledgling consulting business going, or, like me, spending hours after work on the phone or meeting people to interview them for a complicated non-fiction book. Then on the eve of an achievement you’ve pursuing for years on an inconsequential trip, you crash. Game over.

Seeing how the athletes handle adversity is inspiring to me. Usually. This year, it took me a couple of days to stifle the voice pointing out the oodles of people around them, pulling for them, tangibly supporting them, and most of all their coach(es). Every single athlete has a coach to guide them, goad them, hold them up when an injury fills them with fear. People with brain injury may look like they have that, but over the long run, not so much. The spouse tells them to try harder, willfully refusing to educate themselves on what it takes just to pull back the bedsheets and put painful feet on the screaming floor. The parent tells them that they gave themselves brain injury. Friends find reasons not to pick up the phone or meet them where the person is physically, cognitively, emotionally, and socially. Siblings tell them to get on with their life.

The coach knows more than the athlete in some ways so that they can teach, guide, be by their side and encourage through every struggle. They learn. The seek out new methods, new tech to help their athlete attain higher, faster, stronger. They don’t stop after a year, saying why aren’t you top. They keep at it for as long as it takes. Years. Families stick by, even move, spends tens of thousands over decades.

But people with brain injury, facing the same sort of journey because of the stale medical standard of care, must attain their Olympic podium in a year. It’s only possible if receive treatment within 24 hours or days. Ironically, I think only athletes get that. Some of these athletes who recover from concussion or stroke live in centres where I know there are treatment facilities for what I receive. If I had those treatments in January 2000, I would be back to my career, would not have lost my networks, would be fully independent again and able to earn an income. I have no doubt. Even without support.

But that’s not my reality. I live with the long-term consequences of the failure of medicine, of health care professionals working in silos and refusing to bridge the divides and learn from each other. I live with the knowledge I could have a coach, but the people who could have been never saw the rewards of that so walked away. And the person I have now resists; so it’s been like pulling a deadweight to beg, nag, demand, meltdown over and over to get incrementally more what I need to restore some semblance of (book) reading. Just reading though. So much fun being your own advocate. Not.

So for two weeks I escape into the Olympics, stifle my grief, and admire the accomplishments and the people who surround and lift up the athletes to attain their highest potential. And if they crash, they rally round and do it all over again, if that’s the athlete’s goal.

https://twitter.com/shireenj/status/962125701561413632

https://twitter.com/shireenj/status/965804824481681408

Brain Power

Screwtape Teaches Us a Lesson about Reading Rehab

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Tunnel to the light.

Reading rehab continues. Because people were asleep at the switch when I hit the emotional wall with my impaired reading so that I could no longer read books on my own and because things went rather south with my neurodoc, he’s pulled out the stops and is reading with me most days. Brains really do support brains. When you have a brain injury, you can feel the alleviation of effort when doing a cognitive task with another as opposed to on your own. They not only support you emotionally when they’re encouraging and keeping you on task, but also their neurons are like scaffolds that hold up and activate your own.

This extends to the concept of conversation. Reading rehab can simply be reading and immediate recall, or it can include the give and flow of discussion. Discussion is the human way to express what’s in your mind, hear what’s in the other’s. It leads to clarity and understanding of the text, which straight reading and recall cannot do.

I noticed when reading Don’t Forgive Too Soon that the sections we didn’t discuss were much harder for me to remember later during weekly testing of my long-term recall. I also noticed that it was easier for me to remember those chapters I’d reread with my mother, again especially if we’d discussed them a bit. (I’m reading then rereading text to see if double reading within a relatively short period of time leads to better cognitive processing, remembering, learning. So far, I would say it does.)

But adding discussion was sort of ad hoc.

Just before the holidays, we began reading The Screwtape Letters by C.S. Lewis, which I’d read in my injured way many years ago. I remembered only the basics: Screwtape writes to his young relative about getting a human into Satan’s house. Something about the war. And something about the church. That was the sum total of my memory. Oh, and I enjoy Lewis’s writing.

So my neurodoc and I launched into it in the same way as we’d read Don’t Forgive Too Soon. I had no trouble with immediate recall. He also noted my abstract comprehension was improving. But he forgot to get me to do weekly long-term recall until I reminded him. That’s when I fell flat on my face. Although we’d been reading a couple of paragraphs daily, I couldn’t remember much of the concepts or the story, and we’d read only four short chapters! Not exactly a huge memory task. I also saw in my mind each chapter as a silo. I had no idea while we were reading how each chapter connected to the next, except that Uncle Screwtape was advising Wormwood on his latest issue and the human was a man converting to Christianity and was called “the patient.”

How to get me to see the big picture? How to help me build up the narrative in my mind and retain it so that not only could I see the progression of the story but also what Lewis was teaching?

We started over again at chapter one. We read a paragraph or two. I did a bit of immediate recall as usual. But my neurodoc quickly broke in to launch us into discussion. What was Lewis saying? What did I see? What was the theme that was developing? Sometimes I knew the biblical text being referred to and briefly recollected that. Then we discussed how that tied in.

Before we began reading chapter two, my neurodoc restated the theme of chapter one. When we examined the theme or issue in the first two paragraphs of chapter two, we discussed how they related to chapter one’s theme.

Suddenly I saw how chapter one flowed into chapter two. And I began to see the plot progression and the beginnings of the big picture. Phew!

So now at the end of each chapter, I say what I saw as its theme or issue. Then at the next reading session, before we begin reading the next chapter, I relate the themes and how each chapter flows one into the next starting with chapter one and ending with the chapter we’ve just finished. Needless to say, I have to remind my neurodoc that’s what we agreed on and to stick with the program. Sigh.

As we progress through the book, it’s getting harder and harder; yet this method is letting me see the characters, be aware of the plot not just vaguely the concepts, understand more and better what Lewis is saying.

I could not do this on my own. It takes too much effort to initiate; it’s a tremendous amount of cognitive work to do on one’s own; you need another to prompt you or encourage when memory or abstract processing fails; and the discussion part is key. You can’t really discuss something with yourself. I mean, you can, but it’s kind of limited and devoid of the benefits being a social animal gives us.

I need to add this book to my Goodreads so I can track my progress. Oops. (Having another human remind me would be awesome. Oh well.)

Brain Biofeedback

Fatigue Meets Weather Equals . . .

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Dry air. Deep cold that penetrates into the tiniest lung cells. Early mornings interrupting fractured sleep. Brain goes pfft, I’m not doing this, regulating the nose, the throat, the heart, and lungs. Let’s go back to bed.

But bed wasn’t doing me good. I had to keep my head elevated to keep the drips out of my throat and descending into my lungs to create bad news.

I dragged myself out to brain biofeedback where I found to my happy surprise that gamma enhancement made my throat stop wanting to cough hack scratch. Phew.

I was also using low-intensity light treatment on my neck and upper back to calm the twitchiness in my throat and lungs. I didn’t know if it would work — I was kind of like how I am on the computer: let’s see what this will do . . .?

It helped, like the gamma did. But the weather continues its assault, and I’m not resting properly. Soooo . . . Just don’t talk a lot!