I sit in a noisy café, sipping fresh, black coffee, eating a cream-filled pastry, writing in my iPhone. My brain pines for peace. My soul needs the treat, the semblance of normal life. My brain will recover; I’m going to be tired by the time I get home regardless of where I go, anyway.
They say that these little kinds of social connections, the brief encounter with a store cashier, the discussion of what coffee to drink with the barista, the fast-disappearing engagement with one’s TTC driver, alleviates loneliness. It isn’t only the big social gatherings that prevent loneliness. In fact, I would say that the big social gatherings in the absence of regular phone calls, text chats, coffee dates, email hellos, only accentuate the downward change in social status, the loss of normal relationships, and the intense isolation brain injury brings.
At the end of a very bad year, I turned my back on the fiction of big social gatherings and scrimping for the future and turned towards spending on the present to gain these many small moments of smiles and hellos with strangers who became known to me and me to them. Even though they don’t know my name.
My consultant popped in during the first hour of my session and read to me a whole paragraph. I ensured I understood the idea before she began reading. The idea: as she reads, I’m to visualize — create images and moving pictures in my mind — of what she’s reading. When she’s finished, I tell her the story based only on the images I’ve created. Then she asks me questions about those images to help me fill them out and, as well, asks me what I picture in those parts of the stories I’d totally forgotten or hadn’t created images for. Once I have a vivid and stable series of images and/or moving pictures of the whole paragraph, like with Sentence by Sentence and Multiple Sentences, I give the main idea.
It is not as easy as the words make it sound. The effort strains my concentration ability; it fatigues so much, I’d like to quit; it’s a series of my mind consciously commanding my brain to create images as I push my brain to keep focused on the words coming into my ears and eyes and my mind once again consciously commanding image creation until the words blur into each other and fall out of my consciousness until I can again pick them up and create out of them an image.
The consultant had done this before with me on the fourth day. This time, some images popped into my head a little more readily than last time. I did well enough that she added Whole Paragraph to my regimen, as we’d discussed she may do during my progress report. I had a small heart attack at the idea of creating images on the fly and the thought of launching right into that and abandoning the comforting regimen of creating images one sentence or two sentences at a time, under the guidance of the clinicians. But never fear, we would retain the core part of the program. Sentence by Sentence followed by Multiple Sentence followed by Whole Paragraph in one hour. I wasn’t sure how we could fit that all in because I didn’t think I’d completed three tasks yet in one hour. But my consultant assured me that as I improved, the Sentence by Sentence wouldn’t take the first half hour but less time. That one takes the most time because we do each sentence individually.
When Lindamood-Bell consultants assess, the lesson plan changes immediately. No dilly dallying here. My second hour tonight included Whole Paragraph, a story on ancient Romans. No giving the brain any choice in the matter. Naturally, it went, WHAT?! You want me to do WHAT?!!!! Then it glared at me, demanded truckloads of sugar, we bargained, then agreed upon the usual ice cream afterwards, this time chocolate with its added benefit of a taste so strong, it belted the tongue and woke up the brain.
Not much to report on day three. Things are settling into a pattern. I’m getting used to them being in winter, with people being sick and dressed in puffy vests or jackets, while I’m slowly burning up in Toronto heat. I’ve met all the people I will work with, I believe. I hope so. Learning new faces and new accents every day, three days in a row, is not easy with a brain injury! Each brings their own angle to the work; I learn something different from each one, although the work is the same. We begin with one or two sentence-by-sentence then finish up with a two-sentence multiple sentence reading of a one-paragraph story. I think I’m fine as we begin. Within seconds, my brain goes, nah, don’t wanna work. The first sentence of the hour or of a harder task kind of fizzles away in my memory. Sometimes I can snag on to all the details in some sort of grasping of vague-feeling words. Other times, I’m prompted or the sentence is reread to me. After that, I can see the words, not images, of the following sentence(s) being read to me or that I read; then I must conjure up pictures representing the sentence or two sentences. But every now and then, image fragments appear as the words are being read to me.
I’m starting to get the hang of the fact that the pictures don’t have to make logical sense, just that they represent in a way that will help me remember the sentence(s). We finish when the clock runs out, wherever we happen to be in the last reading. Today, we stopped after I did a picture summary of a multiple-sentence recall. Thank GOD! I went and bit into an ice cream sandwich. Savoured its coldness and rush of glucose to my starving neurons.
The weather gods jumped our temps from jacket cool to sweaty tank tops. Pretty soon, we’ll be seeing caterpillars munching on flower buds and leaves as this two-headed monster was on a milkweed flower last year.
Brain injury and PTSD are like a two-headed monster sitting on your psyche, slowly munching on your sanity. When one head gets fed alternative fuels to calm it down, the other chews harder on your brains. There are days when there seems to be no solution.
I think I’m supposed to give you hope at this point, talk about how a kind psychiatrist can soothe one head while the other gets calmed and then switch to the other head while the one they was soothing is fed. Or talk about how psychologists advanced in treating brain injury with 21st century technologies can calm both heads at once. Or maybe talk about how inspirational quotes make the heads feel great. Or perhaps talk inspiringly about endurance and grit as psychologists keep feeding and psychiatrists keep soothing the monster.
I have nothing. I’m tired. An old friend reminded me I hit these plateaus. True. I’m still tired though. I think I just need kind listening and supporting as the two-headed monster grows a third head called grief and all three masticate my brain.
I’m not really sure what to write. I’ve had a month of events coming at me, new writing projects and blogs popping into my inbox, keeping me going, prodding me into action, sweetening my life with purpose. . . Suddenly I’m having to initiate work on my own again. And I’m clueless.
Work ebbs and flows like swirls of icing on a chocolate cupcake. It entices to dip in a finger and taste its fragrant purpose. But blocks freeze motion, fray purpose; the icing remains untouched and slowly begins to harden on its surface.
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.
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.
As anyone who’s followed me for awhile knows, I’m a diehard Olympics fan. But going into 2018, I didn’t remember the Olympics were this year. And last week I was barely aware of them and only realized five days before the Opening Ceremony that they were about to begin! I don’t think I’ve been this dialled out from the Olympics before. I’m not sure why.
I always plan to take two weeks off but obviously not this year. The time zone difference is a challenge; only way to watch it live is to reverse the sleep schedule. That’s beyond me! I could still cancel my appointments . . . but I just can’t get up enough motivation to overcome the inertia . . . maybe lethargy would be the better word . . . or maybe it’s all part and parcel of my what are my priorities, where am I going, can’t believe it’s been 18 years of recovery, I’m never going to get fully better am I, state of mind.
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.)