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.)
You never know when you enter a new year what the crash anniversary will be like. Sometimes you think you’ll skate through it, then the day dawns and wham: you might as well have stayed in bed.
This year, things went south early on in 2018, which to me, boded ill for today. Last night wasn’t great either. Fears picked at my nerve endings, and worries wormed through my axons. I finally fell asleep and awoke too early. I zapped my brain with what I used to call the light and sound show — audiovisual entrainment using SMR/Beta frequencies to paradoxically create calming brainwaves in my concussed brain — and turned to Twitter for welcome distraction. I stumbled on an article about a new way to objectively take the brain’s vital signs, sort of like how we measure the pulse and blood pressure to take the body’s vital signs. I emailed my brain trainer and the ADD Centre the article and asked if they’d heard of this Canadian research from out west. Their quick reply was enough to push me up and out of bed. In our world of being too busy to reply, we’ve forgotten how life-giving a quick reply, even the briefest of ones, are. Then Canada Post after subjecting me from late December to early January to the most exhausting experience of waiting for a package I’ve ever endured, suddenly turned up with my second one. I was expecting it to be shipped today, not arrive today! Whoa. The rest of the day unfolded like that, threading me from one unexpected good moment to another.
It’s the end of the day as I write this, contemplating a poster I made for myself in 2007 from the picture of the rose above. My (first) stint at brain biofeedback was ending. I was being discharged into an unknown new reality with both trepidation and faith that my hard work would return me to my dream. And now I’ve arrived at a new ending, the end of writing and publishing Concussion Is Brain Injury: Treating the Neurons and Me, the final version of my memoir; the end of believing that my PTSD can be treated; the end of focusing on my health care. Unless God answers prayer, I turn my face away from the idea I always held in front of me: that my brain injury can be healed fully, that I will avoid the heightened risk of Alzheimer’s. I’m eighteen years post-injury and am not remotely close to normal health. The poem I wrote for myself over a decade ago speaks to me now into whatever time I have left.
Sun on the rose, Kisses us awake, To the possibility of hope.
When you have a lot of trouble reading books, that is, seeing the big picture, absorbing details, able to build up the narrative in your memory, learn and retain the learning, etc., etc., studying philosophy of mind gets a little discouraging. Unbelievably exhausting too. Enter videos. When you can’t read, watch!
Video courses may have been set up for normal, busy people who want to learn in their spare time, but they’re a boon for people with disabilities who would like to go to class but cannot due to various limitations. Financial is a big one, too, because the unemployment rate and medical expenses for people with disabilities, especially brain injury, are rather high. Not much left to pay for courses or ways to compensate for one’s limitations.
One of the perks of winning NaNoWriMo was a discount on Great Courses Plus. When I found out they had a series on Philosophy of Mind, I signed up! I began watching the series right away. Brain injury makes everything slow going. I just finished watching lecture 7 of 24 of Mind-Body Philosophy. It’s the second time I’ve watched it. I couldn’t recall this morning the last lecture I’d viewed before Christmas, this one didn’t seem familiar, loaded it, went, oh yeah, I have seen this, but kept watching because I hadn’t understood what the eye had to do with consciousness. This go round I got it . . . I think.
If consciousness is like a picture, then I guess the point of this lecture is that what the eye sees should be the same as what our conscious mind is aware of. It isn’t. Prof. Grim (no, no typo) showed two card tricks you can do with your vision. One is without seeing what it is first, you hold up a playing card way out to the side while looking straight ahead. Now see if you can tell what colour it is. You won’t be able to tell if it’s black or red until you move your arm closer to the front of your visual field. For whatever reason, with both eyes, I can tell much earlier than he could. The right side was more of a blank white with one playing card until I held the card at a particular angle. Perhaps I have more cones in the periphery than normal . . . ???
But it was the other card trick that made me realize something. On a white card draw an ‘x’ and a black dot, about 2 cm apart. Cover the right eye, hold the card up straight ahead with the ‘x’ on the right side of the card, and bring the card slowly toward you keeping your left eye focused on the ‘x.’ At one point the dot will disappear; as you keep bringing it closer the dot will reappear. If you draw lines around and over the dot, the dot will still disappear but the hatching will not.
The current view of philosophy of mind philosophers is that the brain is the mind. If that is so, then why does the dot disappear? It disappears because of the physiology of the eyeball. But the brain can “see” the hatching that is over the dot. In other words, the brain is very, very good at filling in our blind spot. I have personally experienced how good the brain is at approximating depth perception (which I realized only last year when I acquired true depth perception and what the difference is). But if consciousness is the brain, then when I am conscious that there is a dot on the card, my brain should still be able to see the dot. If brain is consciousness and consciousness knows the dot is there and the brain is really good at “filling in” missing info, then the dot should not disappear.
When I took Philosophy of Mind Oxford short course online, I became convinced of the dualist argument. The mind is not the body. The brain is not the mind. This dot test, is one confirmation of that.
talk talk talk — my original blog — has been looking sad and dated for way too long. I put updating it in my endless ToDo list. Publishing Concussion Is Brain Injury: Treating the Neurons and Me moved it from being written in some task app into my head, needling me regularly until finally Christmas arrived with NO appointments, NO TTC to sap the living energy from me. I got it done. Took longer than expected. With brain injury, doesn’t it always? I used one of Blogger’s new themes, then customized it, sticking with a dark theme because I liked it, and it helps to differentiate my political blog from this one. And I fiddled around with one of my Toronto waterfront photos for my header image — even mulling over a quacking duck shot — until I decided I liked the sardonic look of the gulls. They’re just soooo Toronto and political looking.
Yes, folks, talk talk talk is looking pretty good now. The gulls are even impressed. Sort of. The only problem is that with losing so many years of regularly working on my websites to focus on my brain injury recovery, I lost my familiarity with HTML. I only ever copied and pasted code I needed that I found on the web, anyway, but trying to figure out how to change the full post page to a white background with black text defeated me. The HTML code looked like complete gibberish. Worse, I couldn’t find what helpful techies in their helpful posts said to find in order to add or replace code. I felt like my computer-understanding brain had turned into Swiss cheese. Blogger’s themes are more visually accessible than they used to be, so I’m going to have to rely on that . . . for now. It’s not that easy trying to make one’s blog or website accessible, but as I improve, I’m hoping to be able to do that here as well as over on talk talk talk.
The nice thing about refreshing a blog’s look is that it makes you want to blog again. It’s been sporadic on talk talk talk and barely weekly here because I had to make the hard decision five, uh, six (gulp) years ago to putting my energy once again towards treating my injured neurons and recovering brain function. I hadn’t truly heard the years ticking by until I logged into my CafePress site to update its widget on talk talk talk and saw my last login date: November 2011. That was a depressing stunner. I have some choices to make.