It’s been a year of painted brains, painted masks showing the experience of injured brains, and no change. Awareness gets you nowhere, it seems. It’s been a year of screaming for help, giving up, and only then getting effective reading comprehension restoration and grief therapy. The irritating reality-denying be-positive messaging finally stopped, and the healing effects of getting the crucial help I’ve been seeking for my reading for almost two decades began.
I wish though I hadn’t had to yell and beg for the help I needed over and over and over and over. I wish people had had the courage and stamina to support me from the start in my recovery. I wish health care professionals had the excitement in their hearts to ditch the neglectful standard medical care of brain injury and innovate so as to give innocent people their lives back.
I hate brain injury. I hate that I had to pay the price of being traumatized to get the effective treatments and support I needed. Why are people so loathe to help the injured?
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.