“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!!
Extending my crowdfund campaign seemed like a good idea. Maybe people who’d been thinking about it would use the extra time to make that pledge, to say with their hard-earned income that they believed in and supported updating Concussion Is Brain Injury through PubLaunch. My campaign certainly received more retweets, likes, and shares! People threw their support behind it.
Unfortunately, the pledges just about dried up. And meanwhile, my energy stores dropped and dropped, and my pain rose up. I was starting to get mighty pissed at the pain in my right hip and lower back waking me up every morning, even after I’d thrown everything I had at it one night and managed to quiet it down to almost zero.
And so I hunted around and gathered new sources to prop up my flagging energy. As I write this, even those sources are flailing futilely in the wake of my injured brain screaming, “Uncle!” as in, I give up. No more work!!
I used to have a habit of pushing myself until I crashed. It took me well over a decade to learn how not to do that. This past month has been a blast to that past! But some of these newish energy props are keepers.
1. #braininjury sucks the life out of your energy. Brain biofeedback gave me some bk; I use devices & strategies to prop rest up. @PubLaunch
Now that the crowdfunding is over and that it will be an Ingram Spark book not a polished book with the Iguana Books imprint — not enough funds were raised for proofreading, distribution, and marketing — although at least in the last hours, pledges came in to cover the full editing costs! — Alright!!! — I will hunker down and focus on rewriting it with the help of Camp NaNoWriMo (it’s amazingly well timed for me this year).
Since it looked right up until the last minute that the funds would not cover structural editing and my injured brain can barely see the big picture of my book — or read it, except with the aid of the Kindle Paperwhite in small chunks — my neurodoc is reading out my Index Card app outline to me.
I began this new method with reading the chapter titles out to him, and the next time we spoke, he read the titles back to me. But now, he reads the Index Cards out loud as I try to absorb. Over and over he reads each card title slowly; over and over he reads any notes on each card with careful enunciation. Nothing happened the first few times, but last week, we focused on the first section of the book, and I began to see. I moved the index cards around, wrote in new ones, and he read them back to me again, starting from the beginning. I added and moved more cards. He took my iPad back and again read them back to me from the start.
Suddenly, my brain quit. Nothing made sense any more. But he asked me if I thought it flowed better, the first section we worked on; I thought so. He did too. He was really happy he could do this for me and that it worked.
On the weekend, I manually copied the work I’d done in the Index Card app over to Scrivener for Windows (their iOS app is coming too late for me) and wrote one of the new chapters. I again reviewed the outline in the app and tweaked the first part of it. The middle to end remain out of my perceptual grasp. But it’s getting there.
And so to the twenty-eight people who backed my crowdfunding campaign: I am writing new chapters and revising the old ones. I don’t know how long it will take me without the full resources I needed, but your faith in me is committing me to finish my book. Thank you!!!
Crowdfunding is so risky. You’re seeing if anyone is interested in reading your book before you even put it out, or in the case of my biography/memoir Concussion Is Brain Injury, if anyone is interested in reading an update. Many indie authors are excited about crowdfunding, but I always was wary. I’ve taken risks with my health in order to get better, but publishing my writing . . . not like this! It’s 10 days in, and it’s not going so well. Kind of disheartening. I’ve received wonderful encouragement, notes of congratulations, supportive messages but so far, only 10 tangible backers — only ten people and organizations have said with their cash that they want to read Concussion Is Brain Injury and believe it’s worth backing.
How about you? Are you thinking about it, wondering if this is just another book on concussion — yawn — or still mulling over whether to back it? How about this, how about another excerpt? Will that help? I hear a resounding Maybe! So here it is:
Waiting, Waiting for the Worst News
April 3rd, I had my first IME: that’s Independent Medical Exam for those of you blessedly innocent of the medicine-through-insurance-company system. The idea is that after you are injured in a car crash, your doctor refers you to a physiotherapist, say, and the physiotherapist fills out a treatment plan for the insurer. Since naturally the GP you’ve been seeing for years can’t be trusted to know your health, the insurer, with governmental blessing, sends you to a doctor who knows squat about you because that way they can be trusted to advise what you really need. And to ensure true independence, the insurer pays the IME doctor so that s/he has zero obligation to you, the suffering claimant, under the do-no-harm rubric of society.
My first IME arrived the afternoon of Monday, April 3, 2000.
I was riddled with anxiety the night before because this IME was happening awfully early in the process. I’d been through Ontario’s insurance accident benefits system nine years earlier. I had a sense of how this system of expert-versus-expert worked, with me and my health care team struggling against it to make me better.
It’s a ritual of being told the date of your appointment and being told you have to show up, even if it means cancelling the medical appointments designed to get you better. It’s a ritual of the doctor examining you in such a way so as to determine you are fine. It’s a ritual of pain, confusion, fatigue that attacks your honesty and your health, yet if you don’t remain calm and be co-operative, you will be blackmarked. That means denial of your treatment plans — the lifeline to getting better. It’s a ritual of waiting to hear the verdict while reports are written and the insurer decides if they’ll pay the clinic or therapist to continue to heal you. It’s a ritual of you begging the therapist or clinic to keep you on while we all wait — or after the plan is denied so that your treatment won’t be interrupted, for interrupted treatment means setbacks, maybe even permanent disability.
But I knew the system. I knew how to behave, what to say. I knew how to protect my muscles and other parts from being re-injured. Yet I felt completely overwhelmed, terrified that the IME would derail my plan of action to get back to writing Lifeliner.
Between the severe pain in my right injured shoulder and my fear, I couldn’t fall asleep the night of April 2nd. I remember lying on my back, praying for release from this hell. I couldn’t fathom why the insurance company had scheduled it only two or so months after my crash. In my experience, they usually waited longer before they began the IME ritual. Maybe it was because I had successfully fought them for good treatment and income support after my 1991 crash when they had begun questioning my treatments. Maybe they recognized me as a claimant who would not be deterred in my fight for my health and who knew the real expense of treatment and lost income. I don’t know.
I only felt confusion and fear.
And then . . .
I sensed God’s presence over my head like a golden light looking down upon me. It reminded me of when I was six years old. I was sitting on the floor in Sunday School with the other children in this new land my parents had brought me to. I was probably sitting lotus style, for I hadn’t yet mastered cross-legged though was trying to in order to fit in. One of the mothers sat on a chair in front of us, her acoustic guitar on her lap. I stared at her straight black hair shining in the sunlight while her voice sweetly trilled one of the songs I was coming to know: “Jesus Loves Me.” The other kids were singing along with her. All of a sudden I felt Jesus near me as if he was a golden light around and speaking within me. I knew without a doubt that Jesus loved me. It didn’t matter that I was considered a brat, bossy, stubborn, relentlessly asking questions, too dark, too light, too small — it took over a year for me to catch up to the nutrition status of Canadian children — Jesus loved the whole of me. And then the presence was gone. It was back to normal in that room — except that my heart sang that at least one being loved me no matter what.
All that ran through my mind as I stared up at the ceiling in April 2000 and felt that almost-long-forgotten presence as God reassured me and stopped the thoughts running around my head like a hamster on a vicious wheel. It would be all right.
That treatment plan was stamped approved.
I continued my physiotherapy and acupuncture and psychology appointments.
And my relationship with God changed dramatically after that.
A good thing, for it wasn’t long before the news worsened.
I had no idea when I went in for my regular weekly appointment with my psychologist that he’d be changing my life from one of planned rehabilitation to one of waiting. Waiting. Waiting. Waiting.
For the worst diagnosis in my life.
Luckily, I had no affect — that is, no emotions.
My emotions had been severed from the rest of me. Sometimes they blew through a short circuit in my damaged neurons and rocked my world into a bawling mass of pain and confusion. But most of the time, they slept. So that’s how I waited: anxious, forgetting about it, no feeling, disbelief.
Oblivious in a way.
The day my psychologist sat down in front of me, leaned forward to look at me eye to eye, and told me what he believed — that I had a closed head injury and needed to have my physiatrist refer me to the right specialist — I did what I was told. I did it though I couldn’t comprehend his calm bombshell in any way other than intellectually. You have no idea how much your emotions help you think until they are shut off like a dried-up well. Yes, I understood his words. Yes, I followed his instructions. Yes, I acted and spoke and told people as if I understood what he’d said, as if I believed what he said. The logical part of my brain continued to work, albeit glacially; it told me his diagnosis made sense.
But I couldn’t absorb it.
And so I forgot about it.
I returned to rehabilitating my neck and shoulders. That I understood, for I had suffered similar whiplash and seatbelt injuries in 1991. I knew who to see, what to do. I knew about the métier of insurance companies. I knew about keeping on top of the paper trail. I knew everything.
But I didn’t.
When my psychologist told me he had to teach me a visualization exercise to reach the peace deep within me, for I would need it in the months to come, I had no idea how correct he was. I couldn’t fathom the brutal hell of brain injury that drowned my life in a tsunami that swept over me like a black, invisible monster. Even years later, I couldn’t perceive the churning waters I was in. My subconscious had no such trouble.
One day I told my psychologist of a dream I had.
I was in a cove. Before me were boulders rising out of the water. Behind and to the left and right of me lay the land. Amorphous green trees surrounded me. The black, glistening boulders loomed out of the calm water of deceptive depths to block my escape. Every time I clambered over one, another would rise up ahead of me. Always before me were ragged rows of water-rubbed round boulders and rocks, their blackness both glistened and sucked in all the light.
I couldn’t escape.
I still cannot.
The depth of the water beyond the boulders terrified me, for I didn’t know what lay beneath or if a boulder would suddenly pop up.
As I waited to see the specialist, I kept on, perceiving only the moment, following my schedule as best I could. My memory problems were becoming too obvious to ignore any more. I had trouble reading the numbers in my day timer. I could read them, yet I misread them. My attention hopped from eating to my pain to my husband’s deep voice to my dog woofing at the door to my fatigue to trying to remember what I was supposed to be doing, all in about a minute. I had to buy a PDA. I chose a Visor. This appealed to my computer-loving heart — I hadn’t yet faced up to the fact that my ability to work with computers had been severely damaged. I could still use one, but I couldn’t trouble-shoot them at all (I had always been my family and friends’ personal IT department) and typing or mousing or trying to read the screen quickly brought on extreme tiredness and pain.
By the time I got my Visor, my assessment appointment at the Toronto Rehabilitation Institute (TRI), Rumsey Centre, came up. I was still waiting for my physiatrist appointment. You would think the possibility of a closed head injury would open doors tout de suite. Nope. I waited three months for the physiatrist, about four for the TRI appointment, and then another couple for the psychiatrist.
The Occupational Therapist (OT) who assessed me at TRI said I was typical for closed head injury. She recommended I be admitted to the one-on-one outpatient neurorehab, pending official diagnosis by the psychiatrist. The logical part of my brain nodded; the coping part wept in relief that I was typical because then my experience was real and the doubting Thomases in my life would have to see my injury; the emotional part burst through briefly and decided it was having no part of this conversation.
I think after that, I didn’t talk much about it. Or think about it. I focused my fractured attention on my insurance case, my physiotherapy and acupuncture and psychology appointments, my husband’s life, and the endless IMEs I was sent to.
The day I saw the diagnosing psychiatrist, I didn’t know what I feared more: being told I had a closed head injury or being told I was malingering.
At least the wait was over.
Except it wasn’t.
The psychiatrist said he was positive I had a closed head injury. Unwittingly, he parrotted the OT when he said I was typical. He ordered a SPECT scan even though he said it would show no damage so many months after the injury. But he wanted me to have it anyway for research purposes at least.
I waited. What’s a few weeks after so many months of waiting? I was so afraid. I didn’t want to be this injured. I was supposed to be writing Lifeliner. I had been lapping up life right up until the moment of the crash, when seconds after our car had been slammed into twice, I sobbed like Job, like I had lost everything: my family, my job, my friends, myself. I had picked myself up minutes later with a plan: I would attack rehab like a full-time job and be back to writing in three months. Later, I amended it to six. Then September 2000 arrived, and I was still not back to writing and now this awful diagnosis sat over me.
When the psychiatrist’s office called me to come in a week earlier than scheduled, I told my husband in my new monotone that something was up. But I refused to face what my mind already knew. I was terrified and still worried the psychiatrist would say I was just malingering. I was a neurotic hypochondriac. All the problems I was starting to become aware of — brain injury takes away your ability to perceive yourself — were “in my mind.”
That’s what he would say, I thought to myself.
I didn’t know which was worse: to have a closed head injury or to have the people who loved me be right: I was malingering, depressed, and needed to get on with things.
I had a closed head injury.
The diagnosing psychiatrist said there was only one treatment, experimental yes, but the rest were placebos. I had two years in which to improve; after that, wherever I was at in two years forever I would remain. But Aricept showed promise to ease short-term memory problems. I needed to take it. He wanted me in the research trial, for it was my only chance.
Only one problem: it was contraindicated for people with asthma. And my asthma had returned with my brain injury like a coughing dog. It freaked me out. So taking a drug that triggers it? Shudder. My husband was furious I didn’t say yes to the drug instantly. As he drove, we argued over the Aricept all the way home. He said in frustration: I was to take it. Why wouldn’t I take it? I don’t accept his opinion. I should take it.
The thought that this was my only chance confounded me. Maybe I should take it. What if I didn’t take it? Would I be forever injured? And anyway, how could I be injured? The scan results were definitive. The psychiatrist was adamant. My psychologist and TRI were all in agreement: I was typical for closed head injury. I had a brain injury. I needed rehab and treatment.
Later, alone in the kitchen with my dog, I called up my father to tell him the news. He and I spoke clinically about my diagnosis, probable outcome, and the drug because that’s how we talk all things medical in my family. But my injury had changed me, though I knew it not. I couldn’t make a decision to save my life. And so in my new, unfamiliar state of indecision — on top of my normal way of seeing and arguing both sides first — I suggested I should take it. My father huffed: I shouldn’t take it. I don’t accept his opinion. It’s your decision.
What should I do? Whatever I did, someone would be mad at me. I didn’t want anyone to be mad at me; I only wanted to get better.
I phoned my mother at work.
You need to know something about my mother. When she’s at work or scheduled for work, she ain’t coming over or taking me to a doctor or to the ER. It’s a British cultural thing, and I was used to figuring out how to take care of myself. But as soon as I heard her voice, I needed my mother beside me instantly. My voice cracked. I heard my voice in disbelief. My voice doesn’t crack. I had mastered my emotions decades ago. When I cried, it was rare and not from zero to full blowout in an instant, and I didn’t cry in front of people. Surely, hearing this strange behaviour and awful news, my mother would come right over. Surely, she could find another nurse to take over her shift on the cancer ward for a couple of hours at least. A child in distress would be accepted.
She called my sister to go on over to my place in her stead.
My sister didn’t really know what to say. My thoughts were smothered; my emotions had disappeared again. So I didn’t know what to say either. That’s what I remember most about that time after my diagnosis: not knowing what to think or feel, except for sudden cracks when emotions rocketed out, only to disappear as the cracks sealed up again.
My best friend, BF, called. Relief. In her take-charge voice, BF prescribed tea, some croissants I had bought on my way home from the psychiatrist, and chocolate. After work, she and her husband brought me a chocolate cake. I remember the round cake frosted in waves of chocolate icing sitting high on its green plastic plate, covered by a clear plastic dome with corrugated sides. It was for medicine, she told me, not for sharing. They left. I took it into my kitchen, my dog trailing me, and ate a slice. Fatigue, confusion, fear blanketed me like smog.
I’m jumping up and down yet figuratively biting my nails. Today, I’m taking a step I didn’t think I ever would. Today, I’m trying crowdfunding! Oh boy. It’s a big risk because you’re asking people to put their cash towards launching your books out of your computer and into print, to take what only you and a few others have seen and turn it into paperbacks and ebooks that anyone around the world can read. I’ve always admired people who crowdfund. Their inspiration, my editor at Iguana Books, and my own circumstances have combined to at last get me to take this step for Concussion Is Brain Injury.
I want to make it better for readers. I want to enrich and enhance it with ground-breaking new sections that challenge the status quo, sections on the raw reality of relationships, the truth about our emotions, my thoughts on CTE (Chronic Traumatic Encephalopathy), faith after injury, rehabilitating reading in the knowledge economy, and a promising new treatment that I kickstarted.
To that end, I need your help to fund the services I need to bring this book to readers. The funds raised through PubLaunch – a crowdfunding site designed specifically for authors and readers – will go towards professional editing, a new exciting cover design, better packaging, and a robust marketing campaign. In return for your generous support, I have set up some great rewards for you, including prints of my original photography, special edition hardcover copies, and copies of my previous books.
I wish all of you, my readers and the ones who keep me writing, the people who’ve generously helped me in time and expertise, friends in all time zones, a Merry Christmas, Happy New Year, and Festive Holidays. And I raise a large brandy snifter of hot chocolate to the hope of a better year to come in 2016.
Kerry, a Board member of BIST (Brain Injury Society of Toronto), and I attended the TTC Public Forum on Accessible Transit back on 16 September 2015. I had spoken to one of the BIST Board members a few months previously about TTC accessibility, and he’d suggested I attend accessibility meetings. I told him this was one area I couldn’t do alone. I have to do most things by myself; I’m overloaded. I can’t do one more thing on my own. The Board took that to heart, and Kerry invited me to attend the Forum with her and drove me there. What a difference it makes to have someone with you! Not being alone buoys you up, gives you the ability to spend precious energy on the activity not as much on getting there and back, means you have someone to hash over a shared experience, helps you think, and empowers you to participate in society in person, not just virtually. This is what a person with brain injury needs. Heck, anyone needs!
TTC staff were there, talking to attendees with visual, cognitive, and physical accessibility problems on the TTC. And the top management were there listening to complaints and noting down questions. (The TTC will post their answers in the first quarter of 2016.) But the TTC Commissioners with the exception of TTC Chair Josh Colle and Councillor Shelley Carroll, were absent. And yes, the Forum is legally mandated, but the staff showed up, while, politicians — who represent the people — did not with the rare exception.
Despite Mayor John Tory’s avowed interest in accessibility, he and members of Toronto Council were largely absent from the forum on the biggest accessibility issue the city faces.
Politicians pay lip service to physical accessibility; are unaware of cognitive accessibility; don’t care to hear directly from the public.
The changing of subway line names to context-less, abstract numbers was a design decision and didn’t take into account how people remember and navigate their environment. The TTC needed a unifier and thought numbers was it. Um, no.
The TTC has a problem of replication of names, for example, St. Clair station and St. Clair West station. Once the Crosstown opens up and if they named it the Eglinton line, there would be Eglinton station, Eglinton West station, and the Eglinton line. There’s a singular lack of imagination in naming stations and lines to retain context but make them distinguishable without resorting to incomprehensible numbers.
The TTC believes white text on black is the easiest to see. It is in certain kinds of design but not for maps, especially when they’re small and above your head.
The design team at the TTC aren’t fully aware of all the research on memory, navigation, the distinguishability of colours depending on use, and so on.
This might explain why signage seems to be a constant work in progress over the decades and why it’s not visually and cognitively accessible, with certain rare exceptions.
The TTC is trying to make shelter maps more useful and haven’t received much feedback from the public on their pilot program. Apparently, they usually do.
There’s a new international standard for Exit signs that the TTC is implementing. I saw these green, running-man signs on the London Underground. There was a big difference between the ones on the Underground and the one I saw at Bloor station: size. Size matters when you’re panicking and running from a crisis. The bigger the sign and the closer to eye level it is, the easier it is to see. The TTC seems to think in its design decisions that they have less room than they actually do. Yes, stations built in the 1950s are small, but so are Underground stations built decades earlier, yet the Underground makes its maps full wall-height size and its running-man Exit signs very big and places them at eye level.
The streetcar stop request buttons were placed according to a math equation not on practical use. I don’t think new vehicle designs are tested by real-world people with cognitive, visual, auditory, and other physical challenges.
The button on the doors of the new streetcars serve as stop request buttons in between stops. Who knew! Not the person standing in front of the door who walked across the aisle to press the stop request button and then returned to her spot in front of the doors. Who can blame her for not knowing – there’s no sign telling you.
The TTC wants to be a beacon for transit systems around the world. Uh, the TTC needs to get basic accessibility down first. “Beacon” is a long, long, looonnnnggg way off.
If you want to add your voice and help make the TTC accessible to everyone, here are some contacts and ideas:
CBC radio (and I think Toronto news too) don’t use subway line numbers but their names, maybe because I brought it up with them as an accessibility issue. Metro Morning said accessibility is important to them when I tweeted them about this. If you hear your favourite radio or TV news show using subway line numbers, tweet them (easiest), email, or call them to object and tell them it’s an accessibility issue and they should use the proper subway line names. Tell them they make it cognitively challenging and worsen the accessibility of the TTC when they use subway line numbers instead of names.
Here’s the contact details for the TTC people I tweet the most (their email addresses are on their Twitter profiles):
Below are the Twitter feeds for TTC Help. When they use line numbers and I see it, I RT their tweets with the line names and the hashtag #accessibility or I will ask them to use the line names. I noticed during the election that David Lepofsky is the king of repetition, and he gets results.
From my reading rehab so far, I’ve learnt the number one need is a reading coach.
Let me explain.
Brain injury sounds so simple. Like with a broken leg, you get the diagnosis, you know what it’s all about, right? Um, no. Unlike with a broken leg, it takes years to learn the totality of the injury and its effects — probably why in their simplistic thinking, the medical profession has dubbed the long-term damage “PCS” — Post-Concussive Syndrome as if finding out the totality of the injury makes it a separate entity mysteriously arising from the injury. Oh brother. But as I was saying!
It takes awhile to cotton on to the totality of the injury, partly because when you can barely brush your teeth, you’re not likely to notice you can’t read. Any problems you have, you’ll probably put down to fatigue or your rehab team will put down to “this is typical” and so not investigate the why behind the problems. Also, damage to systems like initiation, vision, memory, organization, to name a few are going to kibosh many cognitive skills including reading. For example . . .
Maybe you can read, but you can’t initiate so how will you ever be able to actually choose a book and then sit down to open the book in any reasonable length of time, like within a week or two?
Maybe you can read, but your eyes do strange micro movements no one has ever picked up on, so you think you’re perceiving letters, but the effort to do so hogs so many brain resources that there’s nothing left to process the meaning of those letters and it takes a few conversations with your rehab team to realize you’re not actually reading (although with inadequate assessment methods, they probably won’t know the reason why).
Maybe you can read, but you can’t organize your way out of a paper bag so how would you ever get to figuring out when to read and then finishing a book you like?
Maybe you have no problems perceiving words, sentences, paragraphs, but at the end of the book you have no idea what happened. And who was Mr Smith, that other main character again, you ask yourself as you close the small novel it’s taken you a month to read.
And so on.
So first off, you do need a complete and thorough investigation of your eyes and brain to determine what exactly are the problems. But after that, the number one need for successful rehab is . . .
. . . a reading coach!
First off, relearning to read is like going through childhood all over again — but sans parents and teachers to teach, guide, and keep you at it. A reading coach subs in for parents and, perhaps, teachers.
Initially, you’re going to have all the “motivation” in the world. You’re desperate to read and that desperation will look like motivation to everyone. But reading is tricky, and without proper treatment of the injury — which most don’t get because strategies ain’t treatment — and even with — it will take years to recover. Maybe you’ll get lucky and some short-circuiting network will heal itself, and voilà: all better.
But most of us can’t count on that.
A reading coach will keep you going when your desperation turns to despair that this will ever get better — and what looks like motivation dries up. Your reading coach will be your unending source of external motivation to heal your reading — and won’t let you give up and bury your grief in order to accept the status quo like most people want us to and so we think we have to, calling it being positive to make it OK.
I’d just like to say something about being positive. Positive is facing a problem full in the face, not accepting it as OK but fighting to find a solution. What is not positive — is accepting the problem as the “new you,” burying the grief (that will pop out and bite you in the ass down the road, you can bet on it), and saying malfunctioning reading is A-OK so that your health professionals who are failing you don’t have to push themselves to help you recover your reading. That’s not positive, that’s quitting. It’s letting people fail you because they’re too lazy to find real solutions or don’t want to face the fact of your tragedy. And it’s not allowing you to express your true feelings and fight for what you really want: your reading back. Speaking of which . . .
A reading coach will discuss and encourage you over any bumps in your reading rehab. And you will come across lots and lots and lots of bumps. If you have trouble problem solving even the littlest thing, you’re not going to be able to continue when you have a bumpy reading day. The bumps will flummox you for weeks or months and by then you’ll have lost any progress you have made. More disappointment! And discouragement! And despair!!
A reading coach will ensure bumps are solved quickly. You won’t lose your momentum. And you won’t lose any progress you’ve made.
It is actually easier to read when reading with someone. I believe it has to do with our biology as social animals. Reading is bloody hard. Anything to make it easier so that we will stick to it and get it back is a win.
When our wonky emotional centres, what doctors call mood disorders because they can’t wrap their minds around the idea that an injury to the brain can damage electrical conduction through the brain’s emotional centres so it’s not a mood disorder but an injury that needs repair — oops, there I go again, digressing — where was I?
Oh yeah, when a healing emotional centre makes functioning impossible at times, when it blocks reading, a reading coach can read to us. Our brains will still be hearing words and having to, at some level, absorb and process reading material. And we will know: hey, no matter what, our reading rehab continues.
That is a big emotional plus!
Brain injury healing is a path littered with failures and leaps backward. Anytime someone can help us keep on achieving when our brain falters, it’s a good thing.
It tells us: this path of healing will not be diverted.
This is such an important, positive message. It fuels our persistence. It keeps us going through the decades.
Yes, folks, I said decades.
Healing the brain takes DECADES.
Especially if your medical team is relying on spontaneous healing and symptom management aka drugs and strategies only.
A reading coach will also notice your improvements, will cheer you on, and will gently encourage you to increase the amount of time, number of paragraphs or pages, or difficulty level — or in my case, keep you from jumping too far, too quickly ahead and then failing spectacularly.
And most importantly, with a reading coach by your side, you won’t feel alone.
Reading is a solitary activity; (re)learning to read is not.
Your reading coach will be the one person who won’t diminish you in this arduous endeavour. S/he won’t pat you on the head and say there’s nothing wrong or it’s good enough, now get on with your life, as if striving to restore your reading isn’t precisely that: getting OK* with your life.
Isn’t restoring precious lost talents and skills worth striving for?
A reading coach by your side says it is. And gives you the best chance to make it so.
*(I was going to type “getting on” — that bloody mantra so many use when they want to look like they’re understanding and helping you but actually don’t — when Autocorrect turned “on” to “ok” and I thought: yeah, OK is true!)
This floating piece of metal is huge. It dwarfs the Redpath sugar plant, which is no tiny building but itself an edifice on the waterfront where people gather to work and play, enjoy life.
As it is with that ship, so it is with reading.
Reading is a huge cognitive process, a monolithic problem that’s a part of, yet is bigger, than the injury of the brain that sits between you and the world.
It looms over the enjoyment of life.
Yet most people can’t see reading as a problem; they talk about that monolith as if it’s not a lake freighter but a tiny sunfish dancing on the waves.
It’s taken me years to first acknowledge that I could not read then to acknowledge the enormity of the problem then to accept it wasn’t going to go away and finally to nag and nag nag my health care providers to truly help me.
My neurodoc began back in January; CCAC said recently, OK, let’s connect you with an agency that helps people learn to read, preferably with one of their ex-high school teachers since it’s the long-form, cognitive aspect of reading you struggle with; and now after the ADD Centre reassessed me this past week, they are going to use my neurodoc’s reading methods with their materials in concert with brain and heart and breathing biofeedback protocols to heal what my EEG reveals as the reading blockage.
I am jumping up and down, screaming in delight!
For the first time, all my health care providers are working on the same issue to complement what the others are doing, with my neurodoc the “non-expert” in reading leading the way. Thank God.
For once I do not feel like a human being being pulled in three different directions as each provider works on totally different issues and don’t talk to each other so that they think I’m only working on what they are doing, which kind of leads to awkward situations where I get questioned on an area one of the others is working on as if I’m not, which then leads to my mind going blank as I grapple with this broadside so that it really does look like I’m doing nada when I’m not. And yes, I’m having trouble blogging and writing too. But I digress.
So my neurodoc is continuing to improve my stamina so that I don’t fatigue to the point of needing a nap and so my will headaches go away. CCAC will hopefully find an ex-high school teacher at a reading-rehab agency who will help me ensure I keep up with my homework, especially in light of my recent out-of-the-blue-forget-to-read issue, and perhaps offer other remedies to restore my reading, maybe even read rhyming poetry to me. And the ADD Centre will treat the damaged areas that are probably responsible for my reading problems while also working on strengthening my recall and being able to spot and understand subtle meanings under timed conditions.