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.
It’s Christmas Day, the snow lays on the ground glistening and white. Sparkly icy flakes blow in crowds off roofs as the wind gusts into the face of walkers hurrying to get their Starbucks or Timmies. Cars hiss on the snow-wet roads, waiting alongside each other at red lights, impatient to get to Christmas breakfast or lunch or dinner, some enjoying the quicker commute others the waiting at the lights, delaying the family roar for a few more seconds.
Church walls block out the city noise. Candle flames vie with stained-glass sunlight as imperfect voices sing carols and greet each other joyfully before parting to their separate feasts. Or barren homes.
Life chatters, joy laughs, pots clang, children screech, grandparents help little hands rip paper, parents gulp down drinks, and the injured brain hides in the bathroom, driven there by conversations swirling around in an unintelligible cacophony of piercing pains. It’s either that, pleasing the family with the presence of the body without joy, the brain’s needs ignored, or sipping eggnog alone in the blessed quiet of one’s own home with no one reaching in.
If it’s one thing I’ve learned — again — from social isolation, part II, it’s that when you can’t get out, people in real life won’t reach in. A token email, a couple of messages, an offer to answer your call if you need anything without an offer to come over and bring coffee or health care, and then silence . . . until you can once more get out to where they are.
Christmas is no different.
Except that God, that Jesus, is always with you.
You can rage, cry, sniffle, marvel over a blue blue sky, take quiet pleasure in watching cardinals glare-hop outside your window, sink into a Netflix movie, and Jesus is always there with you to share in every emotion or lack. People say God keeps his promises. I don’t know. But one thing Jesus does not do that every human does: abandon the sufferer.
Pain drives people away. Pain and a broken brain invites human judgement and criticism. Pain and injury imprison you. But excluding, exquisitely painful suffering draws Jesus right in there behind the bars with you. Happy Christmas.
“Jeejeebhoy’s tale is highly emotional…uplifting, while giving a realistic view of recovery.” Self-Publishing Review
Kind of unbelievable that it’s finally done! Today, good stuff happened. I got my first review of the revised edition from Self-Publishing Review in my inbox — and such a nice review too! They also created a book page for it on their website. Bonus! Then receiving the paperback and hard cover in the mail today ended this week on a real high of this is real!! It’s done. It’s over. And the cover looks way nicer in print than I expected. Kudos to Daniella Postavsky who designed it from a couple of my images (she also helped me with my PubLaunch campaign) and Kathryn Willms of Iguana Books who went above and beyond for me in getting the book published through IngramSpark. Woot! Now the hard part begins: waiting for people to read it and see what they say. I have already heard that the font is a readable size. Awesome!
Readability was very important to me, especially for readers with brain injury and North America’s aging demographic who need reading glasses. I structured it so that readers could read just the story or the Learnings sections or both, whichever suited them. The chapters are fairly short, and the book is divided into sections that mimic my brain injury journey and allow for short attention spans. I asked for a larger font and every section to start on a right-facing page so that visually it would be easy to find the start of a new section.
The revised version is better looking, well edited, has all new material — and I hope is great reading!
This is my story about brain injury. Scroll down or see the sidebar to pre-order!
A long time ago, I suffered a brain injury, a “closed head injury” as the diagnosing doctor called it. All that had happened was that my brain had smacked around inside my skull like Jell-O inside a corrugated, shark-tooth infested bowl. Upon my diagnosis, the first thing the doctor said to me was: “You must write a book on this! It’s a hidden epidemic, and you need to get the word out!” (quoted from the original Concussion Is Brain Injury)
Well, okay, then.
In the year 2000, I was in a car crash. I emerged walking and talking, but the person I’d been was forever gone. Although no one knew it at the time, I’d sustained a concussion. The repercussions of that injury have shaped my life ever since.
Many believe a concussion is a mild injury, when in truth it is a traumatic brain injury in which the brain bangs about inside the skull. If not identified or treated within the first 48 hours, the injury can lead to secondary symptoms (euphemistically named post-concussive syndrome) that require years of rehabilitation.
Traditional rehabilitation, involving cognitive therapy and rest, were ineffective. In addition to lost neurons, I was quickly losing my social connections and relationships. The concussion was threatening to cut me off from the world.
I wanted this hidden injury healed; I wanted the plethora of problems from it, especially the cognitive ones, treated. I wanted to return to society. And so began my long quest to find better treatment. In Concussion Is Brain Injury: Treating the Neurons and Me, I share my journey and discoveries to give hope to those who have suffered from concussions and the people who care for them.
Concussion Is Brain Injury spent many years in incubation, was supported generously through a PubLaunch campaign, and is happy to be re-birthed with a brand-new reader-friendly structure. The Treating the Neurons and Me edition tells my story in all its rawness and in separate sections outlines the lessons I learned, the treatments I underwent that dramatically healed — and keep healing — my damaged brain .If, like me, you have trouble reading, I’d recommend the ebook. Ebooks are much easier to read.
My main credential to write this book is as a person with a brain injury. But I also drew on my education and experience. I am trained in the scientific method and have experience in designing, conducting, analyzing, and writing up research papers. I began working in the research field when a teenager. I worked six summers at the University of Toronto in a nutrition lab, assisting in science, animal, and human subject experiments and learnt much about laboratory research methods. As part of my Bachelor of Science degree in Psychology at the University of Toronto, I studied physiology and neurophysiology, I did an original-research thesis on reducing inattention in a child with attention deficit disorder, and conducted a year-long study on food perception in various eating populations and wrote the Abstract. I was hired as a research officer for a government of Ontario task force on the strength and quality of my research work; I created and analyzed surveys as well as did investigative research. For Lifeliner, I conducted over sixty interviews, read the literature, and waded through a massive amount of medical data. I grew up in a medical household and spent many hours learning from my mother about good nursing care and the social value of volunteering and from my father about what makes for a good clinician-researcher. Doctors don’t intimidate me.
I wanted to see the Blue Whale heart at the ROM (Royal Ontario Museum), but I hadn’t been there in years, never mind in the year since my eye surgery. Navigating large indoor spaces with my new vision still makes my head spin. Yet I asked my CNIB orientation mobility trainer if he could take me for our next training session. No problem. I like his laid-back, don’t-worry, what-you-need-I’ll-help-you-with style. Makes one feel safe. And when the world unexpectedly dizzies you and leadens your brain as if lead weights have attached to every neuron, it makes one feel things will be OK.
So I had no extra worries as I stepped into the Crystal. Sure, the outside with all its spectacular angles spun my head and slowed me down, but I expected that.
I paused in the small area between entrance doors. And then we entered. My trainer had explained that the tricky thing about the Crystal is that there are no 90-degree angles. OK, I thought, not sure why that’ll affect me, but nice to know. It’s one of the reasons I like the Crystal over the previous forbidding, boring ROM addition.
I stepped further into the large area where you drop off your cloak, pay your ticket, and pass through the gates at the top of the rather long slope. No slope, my trainer said. The floor is flat, he stated. Uh, no, I’m walking uphill, and it’s really throwing me off. I stuck close to the wall of angles and asked again about this uphill. The floor is flat, he repeated patiently then lead me into a room off the entrance.
Oh. My. God. I’m back in that freaky room at the Ontario Science Centre! The floor is really sloping, and I’m going to fall! Don’t fall, he instructed firmly but patiently, adding that the floor was flat. I absolutely didn’t want to walk further into this room of angles, of white walls and black floor. But my trainer was pointing out two chairs across the room from where I was standing frozen. Um, all I saw were two metal tetrahedrons or some geometric form with no seat, no back. Come closer, he persuaded. Some days, I’d rather stay home and not do training. Whose idea was it anyway to see the Blue Whale?! Oh yeah, mine.
I inched my foot forward, carefully feeling the sloping floor so I wouldn’t wobble and fall. He reminded me the floor was flat.
I struggled to believe him. My new, so-clear vision pretty persistently told me we were standing at the bottom of an angled uphill.
I was also perturbed that my new 3D depth perception couldn’t perceive the seat or back of these chairs he was warning me about. One careful step after another after a pause after reassurance the floor was flat after careful inching feeling-the-floor step, we made it to the chairs. Halfway there, my brain perceived the seat and then the sloping back, but I wasn’t about to sit down. He sat down. Yeah, OK, I get it. I sat. He warned me the back slopes more than I perceived and to lean back carefully. I never felt the back because I lost my nerve as I leaned and leaned and leaned and felt no metal touch my back. I stood up. I followed him out the room, walking uphill the entire time.
It really was the most disturbing and weird thing. He explained the lack of 90-degree angles was why I saw the flat floor as being on an angle. I thought about how I had no trouble perceiving this area when I’d come years ago and how I would need exposure to this a few times to be able to see the floor as flat again. Who would come with me to do that?
Mercifully the exhibit area had nice straight walls and a flat floor. The wall-size videos were discombobulating to the extreme, but I could turn my back on them. And the lighting was the usual, expected challenge.
We turned the corner, and there it was: the skeleton. Enormous. Imposing. Majestic.
The remains of a mysterious mammal I’ve been a fan of since a kid. In the battle between perceptual difficulty and taking photos, my photography instinct won, as it always did. It’s gotten me into some precarious situations for decades. As I strained to capture the whale’s puny vestigial leg bones that look like jet planes, I almost fell backward. Sheesh, Shireen, don’t fall! Your trainer is near but he doesn’t need to be freaked out.
He had to leave and asked if I’d be OK. Uhhhh… I hadn’t seen the heart yet. But I wasn’t sure about that sloping floor. He repeated instructions several times. We scheduled our next session. He reminded me to stick near the wall and rest. It was kind of lonely, but then I saw the heart.
Another thing I learnt in the ROM is my reading is improving. I read the labels and absorbed them! The words didn’t bounce off my brain. Yeah, I knew much of what I’d read from way back; still there was an awful lot of new information to absorb and process. The cognitive effort began to take a toll. I considered just not reading anymore and leaving. But I didn’t want to waste this opportunity. I wasn’t about to let my brain injury and eye surgery changes shortchange me AGAIN. So I obeyed my trainer and rested for a bit. Then I continued.
By the time I was walking along the other side of the whale, I’d had enough. Thankfully a couple of couples were taking selfies next to Blue’s ribs. Great excuse to stand and not move. Also to let my brain map the video wall and now see the skeleton in light of what I’d just learned.
I conked out early that night. But what a day! So glad I went!!