“Being involved in an accident can be very distressing for everyone involved and the recovery process doesn’t always end when the visible injuries have healed.”
Personal Truths is a UK website that documents real people’s journeys through personal injury and provides useful information for those who’ve been in accidents. Recently, they not only found my blog, but they also featured it in a post about six inspirational blogs that their readers “NEED to read”! Wow! My brain couldn’t compute this blessing that fell into my lap amidst all the dreck that rains down on me (really, could I have a week where blessings outnumber crap?! Too much to ask?). I quickly replied — didn’t want to miss this opportunity no matter how frozen my processing — and supplied them with the photograph they requested to go with the summary on my blog.
When the Executive Director (ED) of BIST invited me to attend a meeting with the CNIB, I said yes. But I had no idea what I was saying yes to, other than getting to talk about vision and brain injury. I also didn’t really pay attention to how many people I’d be talking to. So when I spied through the door long tables in a large squarish pattern filled with people, my eyes grew large. Melissa, the ED, asked if I’d be OK. Uh, yeah. She and the CNIB had kindly set back the meeting so I wouldn’t have to get there at the crack of the working day. I’ve begun getting more stringent with sleep time since I’ve learnt Alzheimer’s is related to lack of sleep. I also can no longer tolerate dragging myself to places every week because I had to wake up early enough to get out on time. Brain injury screws up actual time asleep. The longer in bed, the better chance of getting something on the right side of six hours. Anywho.
We were given seats in the middle front to face the group, and I could see all of them equally well. This might have been the first time where I didn’t think about where to sit so as to accommodate missing peripheral vision — because I’m much more used to having it. Sweet.
Melissa had asked me to go first, and she’d end our presentation with info on BIST (Brain Injury Society of Toronto). I hadn’t planned anything. No clue what to speak on. Didn’t faze me because I learnt a long time ago that brain injury had given me the gift of speaking off the cuff and doing a pretty good job of it. I usually do write up a few notes on virtual cards, then don’t look at them at all because I can’t read and speak at the same time. But between the Olympics and stressors, I didn’t even think about it. As it turned out, my subconscious had been dying to speak to a captive audience. My vision story, the things I learned, needing advocacy and better design and maintenance of Toronto’s accessibility features like Accessible Pedestrian Signals, the anxiety of people injured in a car crash when walking near traffic, all flowed out in one long uninterrupted stream. Even feeling my energy seeping down and out my toes didn’t stop the flow of words. So weird.
The organizer began the presentation with having everyone introduce themselves including the two disembodied voices over the conference phone. It was so rapid, my brain was like, uhhh, I’m supposed to keep up with that? So before I began, I asked who was there, meaning what do people do. There were three groups. As I recall, orientation mobility trainers, low vision specialists (one of whom had a quiet guide dog in training, we all had to resist petting him), independent living including technology (oh, hmmm, mustn’t forget to talk on that), and early intervention for children. I couldn’t speak to the latter, but it gave me somewhere to start since I’d been half-blind since early childhood, and I could talk about how that was my identity and how brain injury began to restore my vision and how getting back my vision was initially not so hot.
They let me talk for a long time. My waning energy told me of passing time, but no one seemed inclined to stop my flow. They asked a few questions, which I was able to answer.
I felt valued, normal, like I had information and experience to share that was legitimate and valued. Maybe this sounds a bit strange to you, but after brain injury, this sort of thing becomes rare to the point that you wonder what’s the point of all the hell, of all the learning to get out of hell, if the only one to benefit is you. And you’re also in this strange place where people treat you with respect, listen kindly, yet don’t include you. And people who know me never call or email me when someone they love is concussed or has a stroke, as if my knowledge and experience is, as if as a person with brain injury I don’t know what I’m talking about because . . . injury.
One thing that really surprised me is that I had remembered to talk about technology and how health care workers need to know more than basics and more than clients know about devices and apps. For example, let’s not think of smartphone as just a phone and thing to text on, but a device that has apps that facilitate our work. For me, that’s writing, and I have three apps for that. I described them as concrete examples help better than simply abstract statements.
After my talk, one person asked my advice about technology. I can’t recall the specific question, but I watched her take notes as I spoke and was blown away. Usually, I get nods and zero interest. Rarely, see note taking and so many notes too throughout my talk and the following Q&A.
Most of the people there were women. No surprise as men aren’t as prevalent in health care professions outside of physician as they ought to be.
As time goes on and as I care less and less about people liking me, I’m becoming more vocal in calling standard medical care of brain injury as medical malpractice. Even so, it’s one thing to say that to someone I know, it’s another to say that to a group of health care professionals. I was surprised to hear that come out of my mouth, but I don’t regret it. During the Healing the Brain conference, Dr. Norman Doidge expressed frustration with physicians and health care professionals eschewing neuroplastic treatments as if these kind of individualized treatments lacked evidence and were some sort of scam. I felt validated hearing him express that; yet he hasn’t suffered as a result of such attitudes.
I’m permanently injured because neurorehab doesn’t include it and because they misleadingly call compensating strategies “cognitive therapy.” Oh please. And the government won’t fund community care for people with brain injury. They keep cutting and cutting (and paying their administrators more and more). I don’t have the social support to compensate for lack of community care — and I’m not alone in that. I also didn’t have anyone working with me in my brain injury treatment homework; I still to this day have to rely on my health care professionals to keep my brain active so that I can benefit from the treatments I continue to receive. No wonder my neurodoc opines that “few would do what you do.” It’s a demoralizing, shitload of work, and I’ve gotten so tired after eighteen years of this, I’ve quit a lot of it myself.
So going to the CNIB, seeing people genuinely interested in what I have to say, asking me questions and writing down my answers was what my soul needed.
My brain needed coffee after! With a shot of chocolate, of course!!
As Alex and Andi on CBC Olympic Morning were wrapping up with a replay of the team figure skating — and really, can one see that too many times (yeah, OK, maybe . . .) — Victoria Ahearn, writing for Canadian Press (CP), a news wire service, tweeted me that she was “doing a story on people staying up late/waking up early in the morning to watch the Olympics.” She asked: “You have time to chat today?”
Oh yeah! I did!!
The way CP works is it feeds articles to news organizations across Canada, some of which automatically run everything that comes over the wire from CP and others, like CBC, decide which ones to use and which ones to skip. It looks like many from local (like below) to CBC and the National Post picked it up. I wasn’t sure whether my interview would make it in, especially after hearing about the fan who’s sleeping in 10-minute blocks so as not to miss a single live moment! Whoa, I can’t meet that dedication. Quotes from that fan started off the article, but mine on live vs. taped-delay finished it up. Sweet!
Books don’t sell themselves. Unfortunately. You must market, publicize, convince people to write reviews for you — not rave about the book only to you. An up-to-date website also helps to sell yourself and your books. It ups your SEO on Google, a good thing as that’s how people find you. But an old-looking website plants doubt in potential readers’ minds.
So I’ve set myself a triple updating job: keep the blog pages that are an extension of Concussion Is Brain Injury updated with new info and ideas; blog regularly; and update the appearance and function of the entire site.
That last task I used to do yearly. Every year, I had to relearn what I’d done the previous year in the back end of my site: how to tweak the theme I used and how to read the HTML/CSS codes I’d copied and pasted to customize my site. Now the free — always and only use free is my motto — theme is obsolete, and I have to find a new one to customize. The problem is I feel like I can’t understand the back end anymore, it’s been years and years since I last updated (for reasons I touch on in Concussion Is Brain Injury). From my experience with SoloLearn, I know my programming knowledge is in my brain somewhere. I can relearn. But I haven’t retained what SoloLearn taught me well. Believe it or not, that is a step up. At one time I couldn’t have remembered my pre-injury programming knowledge at all, and whatever I had learnt would’ve vamoosed in minutes. So at least I can remember for a bit. It was hard to believe that though this past week as I found a new theme, tried to learn it, and all I felt was a massive wall between me and understanding.
I’m beginning this updating mountain climb with an easier site I manage. At first, the new theme was completely — I mean completely, absolutely, totally — incomprehensible to me. I’m used to clicking here, mousing there, to figure things out, kind of like how I play with my photos, trying out different looks until I find what I like. But all the options were, like, huh?‽!!! Thankfully the theme designers had made a helpful video; it just took awhile to find it.
I clicked here, played with settings there, tried and tried experimenting with almost every option to see what they would do to the site. But still the whole thing was murky. And I was seriously, painfully fatigued.
All of a sudden, I understood how their theme worked, what all the options did, how to “read” the back end. Phew.
But now I have to keep working on it, for I’ve only just begun with the basics of the site and after two days off, already began to forget how some of the options worked. I still have to relearn how to use the Events feature I installed years ago, figure out how to make some of the fonts look the way I want, and set up a gallery. And, oh yeah, why does the site title keep changing its look FFS??!!
Once I master the easier site, I’ll be set to work on my site.
If I take too many days to rest, which exhaustion probably will force me to, because with brain injury, rest is neverending, I’ll forget it all over again. Stab a fork in my eye if I have to take too much downtime and relearn it all. But right now, I’m pleased with how it’s looking and functioning . . . Except for that site title that seems to have acquired a gremlin.
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.
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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!!
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.
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.
“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.