Concussion is Brain Injury

Archived Storify on #HealingTheBrain Conference 24 May 2017

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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.

Storify Screenshot Healing the Brain Conference 24 May 2017

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!

https://twitter.com/ShireenJ/status/867482745102110720

https://twitter.com/ShireenJ/status/867441316992569345

Brain Power

Don’t Read, Watch to Learn!

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Although I did well in the Oxford online short courses on philosophy of mind and metaphysics, the reading just about broke me because my neurons in the reading-related networks were injured, and so little is known about how the brain reads that treatment had been a series of guesses and so not hugely effective. Plus no one in the health professions grasped that a writer needs to be able to read for hours, not a few minutes.

In my book Concussion Is Brain Injury: Treating the Neurons and Me, I write about my ongoing reading rehab adventures and draw up a theoretical program to recover reading.

Since I took the Oxford courses, I no longer need a two-hour nap after reading a newspaper article or couple pages of a book; my abstract processing has improved; my cognitive skills have improved; and my emotions are beginning to connect. But I still cannot read philosophy.

Thank God for the YouTube revolution and NaNoWriMo winner goodie of a discount to The Great Courses Plus. The GCP site has a course on mind-body or philosophy of mind. After getting help to sign up, I’ve happily begun watching Prof. Patrick Grim’s series of half hour video lectures with graphics. OK, I needed a nap after the first one, and I can feel my brain straining to grasp the concepts in the second one even though I’ve studied the Greeks back in high school and studied much of the first two videos in the Oxford Short Course. But it’s still a lot easier than reading!

Books

Kirkus Reviews Reviewed Concussion Is Brain Injury

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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!!

Read the entire review of Concussion Is Brain Injury: Treating the Neurons and Me on the Kirkus Reviews website here. Or just go straight to Amazon and purchase it!

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.

Books

Back in the NaNoWriMo Noveling Saddle

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Last night at midnight, I joined my fellow Wrimos in the insane endeavour of starting writing a novel when one should be asleep!

It’s been too many years since I was ready to write, excited to write, able to join my fellow Wrimos at midnight on my computer. Since 2013, it’s been an exercise in desperation to be ready, to be able to overcome the chaos in my brain and the emotional shock of life events to throw myself into starting, never mind writing every day during NaNoWriMo. Some Novembers, I seriously wondered if I’d make it to the end of the month or get anywhere near the 50,000-word goal. Last year, the eye surgery added an additional complication because the general anesthetic temporarily screwed up my writing and the surgery improved my vision so dramatically, I was still adapting to seeing text on screens. I think I had to write on my iPad because the computer display with the way it required my eyes to track greater distances side to side than the iPad made me dizzy as heck. I have no problem now!

This year I want to get back to where I was in 2012: 30 chapters; writing every day; maybe blogging on it too. We’ll see about the latter because I need to regularly type some C++ code (from my lessons to make it easier on me) so that I can keep in the head space of my main character. I’ve set a goal of only 10 minutes per night of working in Visual Studio 2017 so that I won’t tire myself out toooo much. We’ll see.

But however this month goes, it feels good to be back to where I was in 2012 before events threw me off the track of my life. (To read the details of that, see my book Concussion Is Brain Injury: Treating the Neurons and Me.)

Books

Concussion Is Brain Injury is Published!

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My just delivered paperback and hard covers of Concussion Is Brain Injury in their pretty blue-and-white jackets.

My just delivered paperback and hard covers of Concussion Is Brain Injury in their pretty blue-and-white jackets.
“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.

About the original version:
very good book, good reading” on Goodreads

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.

Goodreads.com for reviews and store links

Kobo



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.

Books

Week Five PZ Brain Training and Concussion Is Brain Injury Update with a Side Order of Scrivener

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I’m entering the August/September fatigue-drums. Deadlier than the doldrums. Perhaps good timing that my health care professionals are all taking vacations. Sequentially, not simultaneously, of course! Tsk. But at least my schedule will be quieter. Bwahahaha! What am I thinking?! The universe always finds a way to cut into my quiet time.
Anywho, not much to report during week five training: relief the moment I began training gamma brainwaves at CZ. Not sure why. Maybe because the training is something familiar, something I can do, something that reduces emotional stress not increases it, like so much of my life does. And during PZ training to reduce 16-20 Hz, the back of my neck softened. From the first gamma enhancement training, I tried to sit up straight during the training neurofeedback screens and physical pain and rigidity in the back of my neck blared their presence. But the moment I began PZ, I couldn’t feel the tightness. Was I suddenly not able to sit up straight? Perhaps it was the same change in muscle tone I’d begun to experience in previous sessions that had lead to me being able to turn my head easier and more naturally. The last change occurred during the second PZ screen: my visual acuity improved — my vision cleared up. I experienced maybe slight head straightening and the smallest increase in colour intensity. But colours had already stayed pretty bold, to me, from the previous weeks.

My memory has been recovering in the last week or so. I’d felt like I’d lost it just over a couple of weeks ago after one of my other medical appointments. It wasn’t directly correlated to that appointment, but I had to wonder.

On a different memory note, I received the layout for the paperback version of Concussion Is Brain Injury: Treating the Neurons and Me. I experienced a worrying lapse in memory — I thought I had composed and put in the little comments under section titles while I was working on the ebook format. But there they were in the paperback format. Um . . .

My brain trainer, whom I’ve kept updated on my progress reminded me that all I was working on with the ebook was copying the text from WORD into Scrivener and then formatting. No content edits! Phew. But really, this is why when people take a long time to get back to a person with a brain injury, they get a tad anxious. This is why when you’re working with a person with brain injury you can’t let much time lag before you return the work or provide feedback. Try continuing to work on a project you have no memory of and maybe you’ll understand why scheduling and sticking to it is essential. And why memory failure can erode a person’s confidence and lead to having to relearn something that had just been done. And why that is tiring!!!!

Anyway, I had to trust my brain trainer and my own common sense that I wouldn’t muck about with the content. I kept going. And got it done and back to finish the layout.

Meanwhile, I’m trying to use Scrivener for Windows to create the ebook, thinking it would make ePub and mobi publishing easier. Hah! It’s taken me several days, a couple of support requests, endless perusing of old blog pages on how to do images over the past month, until this past weekend, I discovered that Scrivener doesn’t apply an image class style to images but defaults them to body text. Body text has a tab indent on the first line. Guess why my images are all shifted over and cut off on the right side? Uh-huh. Dumb. Bonus part: they don’t know their software does this. I’m going to have to tell them.

So with fatigue crawling up my ass, I went with the quick and dirty workaround: Shift-return to force it on to the second line where there is no tab indent. It adds a line space above, and in iBooks an empty page because iBooks is old and stupid. Yup, I’m frustrated. But just as I’m thinking I’m sailing now, I discover Scrivener for Windows (not Mac) strips out Scrivener links when exporting to ePub. thud
Let me pick myself back up. Another support request. But I’m probably going to have to go into Sigil and hand-code the bloody internal links. At least I sort of know how to create links in HTML and copy and paste the appropriate code so many helpful people have posted. Just gotta google. When I have some energy.

Books

Concussion Is Brain Injury: Legal Files Fact Checking

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Well, I thought I was done. And then my lawyer’s office emailed. My legal files were there, ready for my fingers to walk through them, my eyes to pick out from among the bazillion copies of the bazillion medical reports, the memos, letters, undertakings, discoveries, police notes, and motions I needed to fact check against the scenes and chapters involving my insurance company and the tort claim (lawsuit) against the drivers who lovingly gave me my brain injury with mighty bangs. I’d already fact checked against my own documents and phone records, but my lawyer #3, the one I implicitly trusted and knew had my back, had information I never saw — nor wanted to at the time. Too overwhelmed just trying to make it through the day, back then. (Well, too often still am.)

As I’d hoped, my personal property — the claim from the 1991 crash, which gave me severe whiplash — that lawyer #2 had borrowed and never returned to me, was also there. Because no one came with me to meet lawyer #2, and because I thought lawyers did what they said, he was able to tell me to bring stuff just so he could get the full picture and then keep it. No one was around to advise me to make copies and give him those. And even if I was able to form that thought on my own, I had neither the energy nor the initiation to act on it. Moral: the only time a person with brain injury should meet with, hire, and work with a lawyer on their own is when the lawyer is completely trustworthy, like lawyer #3 was.

Anywho, legal files are heavy! Not just thick. My muscles protested the next day. And the next. And the . . . I guess I was so focused on finding what I needed each day, I ignored my muscles until I could hardly move from soreness. I went for a walk to work out the stiff and used my low intensity light therapy to get rid of the soreness. But there was nothing I could do about the grief that rose up like a tsunami when I found specific evidence in the drivers’ Discoveries and licence reports that the last driver to hit us was bad, so bad I have just realized that the force of her impact into all of us was probably what made my brain injury severe. The unbelievable part was that in her Discovery she was totally oblivious that she was admitting to careless, thoughtless, selfish, stupid driving and speeding. She answered the questions as if not noticing the car in front of you until he slams on the brakes is normal, as if plowing under the boot of a small car had nothing to do with speeding, as if slower speeds could cause her car to have the worst damage of all our cars. I could see no remorse, no sense of responsibility in her Discovery or the police field notes. The first driver who hit us at least had the decency to ask me at the roadside if I was OK and still remembered years later in his Discovery that I was bawling at the time.

If there was any true justice and any concerted effort by insurance companies and government to reduce the carnage on the roads (aka licensed murder), their Highway Traffic Act, section 130, ie, careless driving charges would have been convicted, and her licence would have been revoked. Permanently. But as Global News reported on recently, the way drivers charged with careless driving are treated is a joke. People are murdered by car and people like me destroyed with impunity.

Books

Concussion Is Brain Injury II Off to the Editor’s

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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

Now to work on the cover image!

Books

Patreon Quest

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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!!!