Seven days in, and I’ve written every day of NaNoWriMo. I haven’t been able to do this in years. Most amazing part: write, edit, fine tune, and post one chapter to Wattpad every day. Up to now, at best, I wrote one chapter daily during November. Never edited before. Too scared to even post it for public reading.
It’s rather exhilarating.
My body feels run over. My voice is dropping in volume. My brain wants a time out — until I begin thinking about Louise, about having fun with this story, about how suddenly riding the TTC is fodder. The worse the slog, the better the fodder. Too bad this counterforce to TTC draining, straining, enraging will last only a month. Maybe if lots of people read it and share it, it’ll continue doing good for all those who have no choice but endure whenever they step onto the red-and-white inaccessible transit. Check it out 👇
There are times when life provides the perfect story for the NaNoWriMo writer. My last few years riding the decreasingly accessible TTC and complaining to politely deaf ears exploded into an idea: why not write my tenth NaNoWriMo novel set in the world of TTC management, specifically a department called, “Customer Convenience Team Vision”? Suddenly, Louise, my protagonist popped into my head. After she said hello, so did Andy the CCTV department head and then Barney Barg, the TTC CEO who nicknames her Lou.
Feeling excited, I decided to throw caution to the wind and upload my chapters to Wattpad, a Toronto-based website where one can read all sorts of stories for free on any kind of device anywhere in the world. I’ve always admired how Charles Dickens serialized his novels in magazines, kind of like flying blind. But I hadn’t had the courage. Until now. This NaNoWriMo, I’m having fun. I’m tackling both humour — I want Louise and The Men of Transit to be funny — and publishing my chapters as I write them. Well, I am polishing them a little first. Still, it’s way sooner in the process than I usually do.
So without further ado, here’s chapter one — New Job — of Louise and The Men of Transit.
The BIST Community Fair and Expressive Art Show was in a new venue. Off of Yonge near Brain Injury Society of Toronto’s offices. People found it easier than last year so the place was buzzing as they checked out all the resources like Sunnybrook Family Navigation, 211, Cota, Free Geeks, and of course BIST. Quite a few of us BIST members had our artwork displayed, and I had a table where I sold and autographed copies of my Concussion Is Brain Injury books. It was a blast!
But I was sadly reminded how much the medical system fails people with brain injury.
I could tell when the person approaching me had had a brain injury. Look into their eyes and you’ll see it.
I sometimes feel — or more accurately, have been made to feel by some physician ABI experts and kith and kin — that it’s just me who struggles. Others do fine. My neurodoc insists how well his other patients do socially after following his advice. I find it difficult to believe, assuming they had social skills before their brain injury, because treating those parts of the neural networks involved in social interaction actually makes it easier cognitively and emotionally. You can have learnt all the skills in the world but you can’t use them well or at all when the involved networks are off and unhealed. It’s rather frustrating to know what to do but unable to do it.
Meeting fellow persons with brain injury reminded me: I am not alone. I hope I conveyed to them that they’re not crazy, either.
One said her doctors opined that they didn’t have a brain injury, only brain surgeries. Well, when you see them clutching every flyer in an effort to find answers, and they talk about short-term memory loss, then they have a brain injury. Just because a scalpel created the injury doesn’t make it a non-injury.
Another told me that they had concussion only in some situations. Huh? Apparently, their health care people didn’t believe they had a brain injury — for some reason the docs couldn’t see it — yet they are filled with fear — the kind of fear we get when the world comes at you like a barrelling train, friends aren’t willing to slow down and accommodate, and you keep missing chunks of conversation or what’s happening around you. Their health care professionals must be stupid. Or willfully blind. Lazy definitely. If you don’t acknowledge such obvious difficulties and blame the person — like saying I have low EQ as one did me while not acknowledging people refusing to accommodate my fatigue and slow processing etc created a situation that lead to everyone being upset. Refusing to see the obvious cognitive struggle in a person’s eyes means the health care professional doesn’t have to up their game, learn about the brain and brain injury, and treat it properly.
Another visitor to my table was stuck inside their head, unable to cope with the sensory informational overload. They had family around them, a mother, a sister, willing to take them around to every table and every artist, willing to learn about what’s available to make their life and brain better. This is rare. A family being there in person, helping on a practical level and supporting emotionally by ensuring their injured loved one wasn’t hunting for answers alone. The others all were alone, even when it was obvious they shouldn’t be, that they wouldn’t remember anything from the fair or be able to learn from all the flyers. The flyers, the brochures, my bookmarks would become a cacophony of paper lying unfound where they would be dumped in the relief of being back home, too fatigued to put the papers in a visible place.
The other amazing thing about this small family: they wanted two copies of my book — one for the injured member, one for the sister to read. Respect! Unfortunately, I had only one left by then. All people with brain injury should have family like that.
Storify, bought out by Adobe, shut down operations, flinging my Storify and everyone else’s into the virtual trash bin. Fortunately, the internet has helpful coders who supplement the pathetic FAQ Adobe created, and I’ve recreated the Storify here below as an archive.
I attended the Healing The Brain conference on Wednesday, May 24, 2017 as a brain injury survivor and live tweeted it, both to share with the world and my way of taking notes. I came away pumped with a clearer way of seeing the brain and a renewed purpose for revising my book Concussion Is Brain Injury. Doidge spoke eloquently on why neuroplasticity can be harnessed to permanently treat brain injuries and Thompson on one effective way to do so. Brain maps prove people with brain injury/concussion have real problems and are not malingering! Read the tweets for all the deets!
Smashwords is having their first Boxing Week sale,* and I’ve taken 50 to 75 percent off my ebooks! Until January 1st, fill your new eReader or old tablet with all my ebooks at amazing prices. Just hit the links below!
As I entered the creative halls of NaNoWriMo, Kirkus Reviews shot me an email saying the review on Concussion Is Brain Injury is done. Nervously, I clicked the link and read:
“A brush with a life-threatening accident spurs a writer to investigate the “hidden epidemic” of debilitating brain trauma.”
Nice first line! I like that they identify me as a writer. When I wrote my first book Lifeliner, people enthusiastically received it — as a one off. The idea that I would write more books seemed . . . well, foreign. But I now have several under my belt, and a mainstay of the publishing industry recognizes me as a writer. Cool!
“In this revised version of her original 2012 publication, Canadian novelist and biographer Jeejeebhoy (Aban’s Accension, 2013, etc.) enhances the text with expanded personal detail, creating an immersive, multifaceted memoir.”
I noticed they chose the second novel I wrote as the one to name. I wondered why, then remembered that was the last one I published in paperback. Makes sense. The etc. is weird but OK. I mean, the number of words is limited; better to have the words go into the review then listing all my books!
I read on and came to —
“The author painfully describes the toll that her injuries took on her relationship with her husband, Mistral; her panic at losing the ability to read; and other cognitive impairments.”
I was temporarily confused over the name. Memory kicked in. Oh yeah, I gave everyone pseudonyms and, as usual, had fun with names when I did.
“Desperate to return to her normal life, she became intensely motivated to find a reason and resolution for her injury through determined research and treatment alternatives.”
Yup, they got that right. I was desperate. Very desperate.
“She’s uniformly candid when writing about a year of devastating setbacks, which she says felt like “a massive plough that trenches through your established networks.””
It’s been seventeen years, almost eighteen (gulp), since I was the person who would never have been this candid. Even this year, as I wrote these scenes, I wondered about it. It’s one thing to write it; another to put it out there. But it’s done, and I just hope that it makes a good difference in other people’s lives.
“Toward the end of the book, she delves even deeper into the scientific neuropathological data of her treatment plan and further developments of her “labyrinthine recovery.””
Another memory hiccup and then, oh yeah, based on everything I learnt, I put forth a theoretical treatment program for brain injury, since rest and strategies aren’t treatment, and a reading rehab program that would do more than make people settle for the new-normal of crappy, effort-full reading; it would hopefully restore a significant amount of reading skill.
I got to the final summing up and read it, holding my breath.
“Perhaps overly expository for casual readers, but the intricate details of the author’s experience are riveting and enlightening.”
OK, OK, first part maybe a little bit of a downer, but the main point — wow! Reading that was an upper. My mother was very very pleased!!
And if you would like to support my writing, please consider becoming a patron. I’m on Patreon, the website that lets ordinary people do the extraordinary action of supporting the artists that they love.
“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 laid it all out, every particle of energy, every neuron corralled in the effort to finish my manuscript by the June 9th deadline. I could’ve gotten an extension, but mentally, the thought of working beyond my capacity for one more day slayed me. I’ve been working beyond my capacity for over a month, and as long as I kept going, I could keep going. But now I’ve stopped, my body has risen up and puffed my eyes, stuttered my voice, pounded my heart, weakened my muscles, and wrung me out. Used to be kind of scary shit, but for the first time, I felt pleased at completing a nonfiction book. Satisfied. I’m not disappointed at a goal unmet again. Nor did I feel like it wasn’t what I envisioned. I also had people work with me every day or every few days. It’s less lonely working on such a difficult book — my hardest one yet — all on one’s own. Having people to riff ideas off of, to pep me up, to schedule me, and keep me going through the tedious parts of writing, made a huge diff. Having an editor provide solid work gave me confidence and a feeling of standing on stable ground.
In the end, it’s good for one’s esteem to have met deadline. So it was worth it.
The day before deadline, a week after two days of the worst nausea I’d had in a long time, my brain made the last connection in new pathways, and I experienced a major uptick in organizing thoughts — I was able to see how chaotic a “Learnings” chapter was and to bring order to it — and a few hours later, an uptick in understanding — concepts that I either had sort of understood or had no clue about suddenly came into razor sharp focus. Needless to say, the new ability to think and understand meant I had to go over chapters I thought I had finished. Not satisfied with the workload, my brain decided to up it.
So Concussion Is Brain Injury II: Treating the Neurons and Me is one step closer to being published. If you want to be part of the process, get a peek at deleted scenes, or an early copy, please check out my Patreon page: http://patreon.com/ShireenJeejeebhoy
In my never-ending quest to find a way to earn an income with a brain injury that keeps interrupting the flow, I’ve joined Patreon. It’s a nifty way for readers who like my books and my blog to support me, like the patrons of old, except for as little as $1US per month. Many artists, even musicians who get much airplay, have joined Patreon because in today’s fragmented publishing world, it’s difficult to make ends meet. Throw in a brain injury that saps your energy so that all you have left is just enough to write but not enough to market, and it becomes impossible. And from the recent controversy over cultural appropriation, you may now know that the Canadian publishing scene is not exactly friendly to minorities either. A seminal moment for me on that score was the withering stare, like I shouldn’t exist, from a major publisher. Fun times.
Anywho, if you like my blog, enjoy my tweeting, get engrossed in my books, want to see Concussion Is Brain Injury succeed aka sell well, or wonder why new novels from me are no longer appearing on virtual bookstore shelves, please check out my Patreon Creator Page and consider supporting me. You’ll be rewarded, for sure!!!