Diversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.
During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.
All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.
Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.
Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.
And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.
So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?
No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?
I wrote last time about my reading evaluation. This post is on my results. When you have a brain injury and rehab tells you that you can’t read anymore, you assume that they’ve done a thorough assessment and analysis of your reading cognition.
You’d assume wrong.
In 2005, five years after I was told I wasn’t reading the ubiquitous mass paperback in my hand, I had a qEEG done, which told me the neurophysiological basis for why I had so much difficulty reading. The first week of June 2018, I underwent three hours of testing over two days that assessed my auditory, visual, and language foundations of reading; my fluency; my comprehension; and my concept imagery.
Huh? Yeah, I’m still learning these too. They match with my experience, but they introduce concepts that I haven’t heard of before or only knew about from a different perspective. I learnt more about where my reading difficulties lie.
My very first thought was: why did I not have these tests done during rehab in 2000? Why did the medical system not assess all my cognitions with full, appropriate qEEGs and these kinds of reading, writing, and math tests?
If I had been properly assessed, not just given a neuropsychological test people with high intelligence can ace, injury or no injury, I would have had a complete picture and been given a precise scientific and medical explanation of why I couldn’t read anymore, not just a general statement of you can’t read.
I also don’t even know how to process the fact that when I asked my neuropsychiatrist for help with reading that the reading expert he consulted pointed to the aphasia website and didn’t tell him that I should have all these tests done, the ones I’ve just undergone. It’s been bad enough I had to wait twelve years for a reading “expert” advice, but to have not known about these tests for a further six years because the medical and “reading research” community are so intellectually lazy is beyond egregious. I’m pissed. And upset. And filled with hope that finally I’ll get my book time back.
I’m still processing my results.
It’s difficult to explain what one is only just starting to grasp. Lindamood-Bell who conducted the evaluation, normed all results to my age and gender.
My reading rate is too slow. I’m in the 16th percentile. That means 84 percent of women my age read faster than me. I believe this rate is about double what it was in 2001. Wow! Some progress!! sarcasm
My foundations are solid. These are the ability to hear phonemes, the sound parts that make up words. The ability to recognize and pronounce high-frequency words. The ability to figure out an unknown word within the context of known words.
I rely on my vast knowledge bank and familiarity with language to prop up my comprehension. When I cannot see a word but only hear it and I have to pick out an illustration that best represents the word, I cannot rely on my ability to decode a word from its roots to figure out what it means. And so I don’t do so well. Based on results from standard vocabulary tests, I drop about ten percentile points, maybe a bit more, when given the same vocabulary test when heard, not seen, and using pictures instead of words to “define” the word spoken to me.
My accuracy in reading words is very high.
Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
When I can rely on my knowledge bank and ability to decode words, my comprehension is good. When I read new or lengthy material even text at grade six level, where I can’t rely on my knowledge of content and language, my comprehension drops a lot.
Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.
As I understand how Lindamood-Bell conceives of reading, reading comprises decoding and comprehension. Decoding is done in the reading foundations aspect of reading. There are three parts to reading foundation: auditory, visual, and language.
“. . . thinking that reading is decoding a word but reading is being able to comprehend.” Nanci Bell
The ability to hear phonemes, the sound parts that make up words.
The ability to recognize and pronounce high-frequency words. The ability to spell high-frequency words, that is, words that are used often in everyday reading. And the ability to image symbols, that is, letters or letter combinations.
Vocabulary. And the ability to figure out an unknown word within the context of known words.
Encompassing these three foundations of reading is comprehension.
“If there’s weak comprehension, … frequently teachers and parents don’t really know perhaps there’s weak comprehension. . . . If it’s really severe could be labelled hyperlexia there’s a gap between ability to read words and ability to comprehend. Or if it’s weak enough, it can fall into the label of autism.” Nanci Bell
Lindamood-Bell uses Dual Coding Theory to explain how what we decode while reading — either text or listening to the words — is turned into comprehension by our brains. In dual coding theory, the symbols — words on text or words heard by the ears — the auditory, visual, and language parts of reading — are turned into non-verbal concepts that we can picture. A painting represents a thousand words and all. (Wikipedia notes it was a Canadian who posited this theory. Why is it then Americans, not the Canadian rehab centre I went to, that knows about and uses this theory to rehab reading?!!!!)
As part of that theory, they posit that concept imagery is how we understand what we’re reading. When we read or listen, we create a picture in our mind of what we’re seeing or hearing.
Nanci Bell, co-founder of Lindamood-Bell, explains the comprehension and concept imagery side of reading in this video below. Note that what we often think of as reading issues, eg, dyslexia, occurs on the decoding side of the ledger. The comprehension side isn’t usually talked about. It usually doesn’t even have labels like the decoding side does. I personally don’t think labels are always useful, but in our current milieu where everything is labelled, a label gives credibility. I think that’s why when people with brain injury say they have trouble reading yet can read words and use some or a lot of their vocabulary, health care providers, family, and friends don’t believe us. But as Bell says, vocabulary is not comprehension.
Now comes the tough part.
Restoring Book Reading
Lindamood-Bell said: “we can restore your book reading.”
“What’s so tough about that, Shireen?” you might ask.
This is like where I describe in my book how I met clinicians in 2005 who knew what I wanted — to heal my brain — and said they would help me do that and could. It’s so hard to describe in a blog post what it’s like to be neglected medically, your angst and desires dismissed, and told to accept diminished functionality for years and years and then be told you can be helped significantly — and then you find out the help was available at the time of your injury; it’s just that the people entrusted with your care didn’t know about it or “believe” in it and your loved ones never searched for you.
Once again, I’m being told the unbelievable, that what I’ve wanted for years is in fact doable. It feels untrue. I asked:
“When you say I’ll be able to read a book like I used to (before my brain injury), do you mean a book at the level of an Agatha Christie? A PD James? Neuroscience article? And/or philosophy of mind textbook?”
“In creating your recommendations for instruction, the goal I had in mind was your ability to read and process literature at the level of your potential, and at the level that would support research and continued learning for your writing. Especially with the full recommendation of 120 hours, I picture your ability to access all of the examples you provided in your original question. Our instruction may start at a lower level, but over the daily and weekly sessions, you’ll see an increase in the amount of language (text) you are processing as well as the complexity.”
Basically it would look like an ascending ladder of difficulty.
They continued: “Since our vision for instruction will include increasing the volume of information you are processing, our goal is to decrease your fatigue, by systematically and consistently reinforcing independence with visualization for increasing lengths of language. Just like any foundational skill (ex: learning a new language, learning a new instrument) practice and continuous exercising of the skill, makes it more automatic. Instruction will stimulate and strengthen this process for you, but practice outside of sessions and beyond instruction, will also be key. You may still need to take breaks, but I anticipate the length of breaks and the frequency of breaks will diminish as you, on a daily basis, start reteaching your brain this visualization process.”
I’ve consulted with some of my health care team. They believe I will benefit, that I need this hope. There is some skepticism that reading books like I used to is achievable; but no matter what, given all the brain work I’ve done, how my brain is now used to training, and how I do the work given me, I will benefit. My reading will improve. Dr. Lynda Thompson at the ADD Centre, who referred me for evaluation, was impressed with the time they gave me answering my questions and liked that they would show the objective learning curve not rely on subjective feelings and measure the gains.
I’m not sure how I’d be able to handle it if I didn’t achieve reading like I used to, though. That’s why I’ll need all the support I can get from my neurodoc. We’re patching things up; I’ve enforced pursuing my goals, and only my goals.
The normal intensity of instruction is four hours per day, Monday to Friday, for four to six weeks. Because of my fatigue, we’ll cut that down to two hours per day, five days a week, for eight to twelve weeks. It seems that I would need the whole three months and would have to practice daily on top of instruction as well as continue daily practice after instruction ends. Whew. That’s a heck of a commitment to work! I worried that the whole thing would be a moot point if I didn’t find a way to pay for it. I need help since the cost is way, way beyond my means. So I’m borrowing. What else is new.
OHIP really should be paying for this. This is what cognitive therapy ought to encompass when acquired brain injury clinics talk about what they do as cognitive therapy. It should also include brain biofeedback and audiovisual entrainment and long-term talk therapy. But first we need to get the medical system to assess cognitive functioning and brain injury properly. And to get anyone working with people with brain injury to take their reading problems seriously. We live in a knowledge economy after all — if we can’t read volumes of information, we can’t work.
Concept imagery underlies comprehension. Comprehension not based on having an adequate vocabulary nor ability to hear phonemes. Nanci Bell: “What they struggle with is the concept or the whole. And if you don’t have the whole, you can’t do higher order thinking skills such as main idea.” They call it in the U.K. aphantasia, the inability to visualize. Higher order thinking: From what you pictured— not what you think — what comes next in this story?
Lindamood-Bell trains to the client’s potential not what falls into the average range. This is significant. Brain injury rehab is about working to the average of what they’ve done since the 20th century, not for what is needed for independence, satisfying functionality, and most importantly, the person’s potential.
Sketches courtesy of Dana Kernik-Theisen, Center Director, Lindamood-Bell Learning Processes, Edina, Minnesota, who generously gave of her time to explain my results, recommendations, and reading theories.
As followers of this blog know, reading issues continue to plague me. A couple months ago, Dr. Lynda Thompson of the ADD Centre suggested I do a reading evaluation with Lindamood-Bell as she felt this would show me I don’t stack up too badly against the norms for my age group and gender. Lind-a-what?? Took me at least a week for the letters in this unusual name to make sense in my head. I made an attempt to check out their website.
I usually investigate people or institutions before I spend my money. But in this case, because I’ve been so worn down by the last two years, consumed by brain injury grief, given up on my reading, I went only as far as determining that they’re legitimate and seem to have ideas about reading that I’d never heard of — and most importantly Dr. Thompson had recommended them — before calling them to schedule an appointment.
The Toronto office doesn’t have a physical location and the online interaction is handled by their Minnesota office. After a couple of time zone snafus, the centre’s director and I spoke on the phone and arranged for an evaluation to be done over two days. She didn’t want fatigue to interfere with the assessment, and from the beginning of this awful brain-injury-recovery slog, I usually try to divide up assessments so that I can continue to function in daily life or not have to nap for days after and deal with a migraine to boot. Insurance companies aren’t too pleased sometimes with that; people who care about your health are cool with it.
I’ve had no experience with telemedicine. After this evaluation, I’m a fan. I didn’t have to wake up an hour earlier and lose valuable sleep so as to be able to commute to a clinic. I could see and hear the person really well. Not so sure about her me because my computer’s webcam is kind of old. At least she could hear me well.
I had bought a decent-sized display two years ago when after my eye surgery my new vision demanded a better monitor. That display showed both her clearly and the documents conveyed through the document camera or the words on her screen that she shared with me a couple of times. She used Apple earbuds to speak to me, and so I never heard the construction noise in the background that apparently started up midway through the test. Also, my voice didn’t blast all over her office. Privacy!
Best part of the e-evaluation: I was able to be comfortable in my own environment, dress in partly sloppy non-constricting clothes, and not worry about organizing myself to get out the door.
All my energy went to doing the evaluation.
This is huge when you have a brain injury and every single thing takes energy from you.
We launched right in with a vocabulary test unlike any I had experienced before. Usually they give you pages on which words of increasing difficulty are listed and beside which are four other words that you have to decide which one is closest in meaning and circle it. In this test, the assessor spoke the word and I was presented with four illustrations and had to choose which one represented the word.
This test was looonnnnggg. And tiring.
There were a couple of words I couldn’t understand and she spelled them out for me. Apparently, me asking her to spell out a couple of words told them something about how I prop up my reading. More later. There were also a couple of words I’d never heard of before, one of which I couldn’t even begin to parse out to decide which illustration could represent it.
Some of the next tests reminded me of Cogmed exercises I’d done last year and had continued to do in a maintenance form up until early January 2018. I also relied on my cognitive psychology lessons on memory to know how to accomplish the task given me. Chunking and pattern recognition is a great thing.
One test where I was shown for a few seconds . . . let’s say a series of increasingly more letters sometimes in nonsense words, sometimes seemingly random . . . then was asked questions on them, I knew exactly how to do. But my brain had to work SO HARD to do it, my head felt like it had exploded. We had to take a break then she gave me five minutes to put my head down while she turned off the screen. I did extremely well but strained my brain to its max because I have no automaticity in these cognitive skills. Automaticity is what happens when, for example, you learn to walk. At first, you have to focus on every aspect of it. Slowly your brain learns what to do and now, as an adult, you don’t think about starting your legs, moving your legs, you just . . . walk. I guess that’s a metaphor for brain injury. You know HOW, sometimes you can execute HOW but the fatigue cost is enormous because the injury took away all automaticity and/or broke the neural networks to execute a particular skill.
Because it was obvious I was doing well on the vocabulary, spelling, etc. tests, especially that head-exploding one, I commented that this is why people don’t believe I have reading problems. Although I have improved bit by bit, I still struggle enormously with the length of material and acquiring new vocabulary. She said that’s why they have tests for that. They were coming up and would be divided across the two days.
She proceeded to wring out my brain with stories I had to answer multiple-choice questions for. I’ve endured so many neuropsychology tests that include stories that I ace because they’re not new to me and my recall of facts of a story isn’t bad in the short term, that I was skeptical.
I read out loud the first story. She took the story away and put on the screen multiple-choice questions and read them out, one by one, and their answers as I followed along. This seemed like the usual, except that I had to read the story out loud. And she had given me a brief synopsis before showing me the story through the document camera.
The second story dispelled any idea that this was same-old, same-old. Every story was in a solid paragraph. The paragraph stories varied in physical widths, sentence lengths, vocabulary length and difficulty, and other aspects. The questions too were not same-old same-old recitation of facts. They required the kind of comprehension you need in a high school English class aka what is a character feeling or what is their motivation. I needed to be able to create a picture in my mind of what was going on. I can barely do that and hang on to a concept image for my own writing!
After I completed the evaluation, restored my brain with one of my neuromodulation devices, and napped, I thought about how the story test got at the reading skills I learned in high school and university. I remember in one class, our teacher showed us the longest sentence ever written and showed us how to read it. In another class, I was taught how to use an unusual word such that a reader who wouldn’t know it could guess at it from the context.
That test and the story one I did on the second day that had open recall questions spoken to me (not shown me like with the first paragraph test), were the first I recall doing that got at those high school reading skills. Because they jogged my memory of those classes, I can now articulate better one of the skills I’ve lost and haven’t regained all that well.
After a pronounce-these-letters-and-two-letter-combos test, I realized another issue my brain injury created in me. Basic verbal language abilities I had mastered as a young child were gone and I hadn’t noticed. I had also not had any review of those skills during neurorehab in 2000-2001 because I could speak. It didn’t matter how I spoke, the fact I could was good enough, and we focused on communication. Looking back on that, I have to say we barely got started in addressing all the communication issues either that I faced over the years.
After I got the results summary, I looked up some of these tests and, briefly, the origin of Lindamood-Bell, and I have to ask:
Why were these tests not given me in 2000 when I was told I couldn’t read?
They would have teased out where the problems lay and the team would never have advised trying audiobooks. Doing a qEEG would also have told them I have auditory processing difficulties. Failing colossally when I followed their advice to read audiobooks instead of text was probably when my self-confidence began to drop.
I have the results and recommendations from the reading evaluation. Will write on those later. I’m gobsmacked and finding it difficult to process it all. One thing I will say: restoring the brain after brain injury costs A LOT BECAUSE Canada’s universal health care doesn’t cover it. Are you aware?
There’s a huge irony in my reading rehab journey: I thought long and hard about what it would take to restore reading after brain injury; I wrote about my theoretical program; I’ve done bits and pieces of that program; I am now receiving the bare minimum of help for reading.
My second and third posts on Psychology Todayare about reading loss and restoration after brain injury because it’s the single biggest loss I’ve had of my core identity, because it’s been so very hard to get anyone seriously interested in helping me, and because both experiences are common in others, no matter their gender or race or cause of brain injury.
I wrote in my third post about lack of cognitive empathy for my reading loss. It’s not that people aren’t sympathetic or health care professionals haven’t tried some of this, some of that, it’s that they haven’t been able to put themselves in my shoes and gone, “ohhhh, this is bad, real bad, we really must make reading restoration central to your health care.”
My neurodoc verrryyy gradually over the last three years made a concerted effort to read with me most days out of the week, following a formula that worked — after six years of me begging him — yet still only when he recalled bits of the evolving formula, when he didn’t shunt it aside for “real therapy,” when he wasn’t welded to staying in his box of 20th century psychiatric medicine and trying to shove me again and again into a gendered 20th century DSM model of brain injury. He never really had cognitive empathy for my reading loss even though he’d agreed that, no matter what, he would find at least five minutes to get reading in and, when he’d followed that, he noticed himself that I did substantially better, emotionally and cognitively. Yet because he didn’t have cognitive empathy for my reading loss, he stopped doing that by 2018. He also never discussed with the rest of my health care team how to work together to recover my reading. And he was pretty blunt in early April that he wasn’t interested in helping me with my brain injury grief, which would include dealing with reading loss. I finally decided the emotional toll of having to continually remind and beg to stick to the reading rehab routine that worked and of his 20th century psychiatric thinking wasn’t worth it anymore. Unfortunately, this kind of approach to brain injury rooted in the last century is still the norm today within medical circles.
So I’m moving on. I put him on hiatus and am putting reading in the past where others have decreed through their actions it belongs. It’s really difficult for me to enforce my own reading rehab on myself; it’s one of the few cognitions that can’t be restored on one’s own. My mother reads with me every so often. That’ll have to be enough to maintain my current level unless God decides to answer prayer and bring me a miracle.
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.
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.”
It’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.
Last 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 . . .
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.
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.
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.