Books

NaNoWriMo and the TTC

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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.

And exhausting.

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 👇

Louise and The Men Of Transit

Books

TTC and Novelling with NaNoWriMo

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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.

Brain Power

The Collective Toronto Yawn for Canada’s Brain Injury Awareness Month

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Love bot at CHIRS, a place for people with head injuryDiversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.

During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.

All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.

Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.

Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.

And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.

So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?

No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?

Brain Power

The Collective Toronto Yawn for Canada’s Brain Injury Awareness Month

Posted on

Love bot at CHIRS, a place for people with head injuryDiversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.

During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.

All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.

Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.

Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.

And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.

So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?

No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?

Books

Voice of America Interview for Concussion Is Brain Injury

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Voice of America American Cafe David Byrd Interview 15 May 2018

I’m so excited to announce that my interview with David Byrd for American Café, Voice of America, is now up and live!

After he interviewed me about my experience and my book Concussion Is Brain Injury: Treating the Neurons and Me, he spoke to Dr. Lynda Thompson of the ADD Centre about me, the treatments, and the hope that my experience gives to people with brain injury — that there are real treatments out there that make it possible to recover! I’d forgotten how difficult it was for me to write until I heard her tell Byrd where my writing skill was at when I first arrived at her clinic. Although I want to forget how bad things were, sometimes it’s good to be reminded so as to realize how tremendously far I’ve come. Take a listen, it’s only 7.5 minutes!

Books

Spreading My Wings, Spreading the Word about Concussion

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I made the 2018 Word Guild Awards ShortlistSo much has happened in the last little while!

It felt like I published Concussion Is Brain Injury: Treating the Neurons and Me and then . . .

Nothing.

For months.

When suddenly . . .

I have been invited to be a Psychology Today blogger . . .

. . . I was asked by online magazines to write articles for them (in progress); conducted a radio interview (yet to air); and . . .

https://twitter.com/ShireenJ/status/994184896519303169

. . . I have been shortlisted for the 2018 Word Awards. I was a finalist with my novel She for the 2012 awards, so this is pretty cool to be a finalist for two different books!

I introduced myself in my first post for Psychology Today, and then got down to business, reading business, for my second two posts:

Reading Loss: The Genesis of Grief, the Seed of PTSD

Cognitive Empathy for Reading Loss After Brain Injury

I hope you will check them out, bookmark my page, and return to read my latest posts. And if you like my writing and brain injury advocacy, please consider supporting me through Patreon, the place for patrons like you!

Books

Moving On From Reading

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People walking away down PATH system.There’s a huge irony in my reading rehab journey: I thought long and hard about what it would take to restore reading after brain injury; I wrote about my theoretical program; I’ve done bits and pieces of that program; I am now receiving the bare minimum of help for reading.

My second and third posts on Psychology Today are about reading loss and restoration after brain injury because it’s the single biggest loss I’ve had of my core identity, because it’s been so very hard to get anyone seriously interested in helping me, and because both experiences are common in others, no matter their gender or race or cause of brain injury.

I wrote in my third post about lack of cognitive empathy for my reading loss. It’s not that people aren’t sympathetic or health care professionals haven’t tried some of this, some of that, it’s that they haven’t been able to put themselves in my shoes and gone, “ohhhh, this is bad, real bad, we really must make reading restoration central to your health care.”

My neurodoc verrryyy gradually over the last three years made a concerted effort to read with me most days out of the week, following a formula that worked — after six years of me begging him — yet still only when he recalled bits of the evolving formula, when he didn’t shunt it aside for “real therapy,” when he wasn’t welded to staying in his box of 20th century psychiatric medicine and trying to shove me again and again into a gendered 20th century DSM model of brain injury. He never really had cognitive empathy for my reading loss even though he’d agreed that, no matter what, he would find at least five minutes to get reading in and, when he’d followed that, he noticed himself that I did substantially better, emotionally and cognitively. Yet because he didn’t have cognitive empathy for my reading loss, he stopped doing that by 2018. He also never discussed with the rest of my health care team how to work together to recover my reading. And he was pretty blunt in early April that he wasn’t interested in helping me with my brain injury grief, which would include dealing with reading loss. I finally decided the emotional toll of having to continually remind and beg to stick to the reading rehab routine that worked and of his 20th century psychiatric thinking wasn’t worth it anymore. Unfortunately, this kind of approach to brain injury rooted in the last century is still the norm today within medical circles.

So I’m moving on. I put him on hiatus and am putting reading in the past where others have decreed through their actions it belongs. It’s really difficult for me to enforce my own reading rehab on myself; it’s one of the few cognitions that can’t be restored on one’s own. My mother reads with me every so often. That’ll have to be enough to maintain my current level unless God decides to answer prayer and bring me a miracle.

Books

I am a Psychology Today Blogger!

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I'm a Psychology Today Blogger -- my First Post!

My New York publicist for Concussion Is Brain Injury: Treating the Neurons and Me has been working hard to acquaint various media outlets with my book and persuade them to review it. Psychology Today was one of those media. But they decided against reviewing my book — sigh. Instead, on April 17th, they wrote my publicist to invite me to become a Psychology Today blogger! They ended their request with, “Thanks again for reaching out and we hope we can launch this blog here quickly.” Whoa! They want me right away?! What a total self-confidence boost!! The best part: PT pays a stipend per 1000 views. So many blogs and media want people to write for free. PT’s stipend — if I blog at least monthly and achieve more than 1000 views — not only helps my incredibly stressful and awful financial situation, but makes me feel valued, my ideas validated. I could never have become a PT blogger on my own. All kudos to my publicist!

First things first. I had to gather up all the material for a profile, including a new profile picture, and send it directly to my assigned PT editor who then passed it on to the web team. Waiting for it to be set up was so hard! I feel like my brain injury recovery is just one waiting period after another. But unlike waiting to see or hear back from health care professionals, this wait was only a few days. While I waited, my publicist advised me on my first two posts. I whined then acquiesced at the idea of making my first post an intro: how I came to write my book and become a PT blogger. I chose an excerpt for my second post, following his guide on how to choose one, and drafted the two posts up so that once I received my login information, I could charge on and publish my first post.

Uh, not so fast. PT is very particular about posting. I not only had to select a title but also a subtitle for my profile. That was brain-wracking enough. But I have to do that for every single post I publish, too. Gulp. Writing a title is hard enough! I also have to choose an image. Luckily, I have thousands to choose from on my Flickr site. Unluckily, I have thousands! Next, I have to draft teaser text that will appear on the home page. This is seriously challenging my writing skills, I thought.

I discovered that my synopsis — teaser text — title and subtitle writing skills, have improved tremendously since the last time I had to write a synopsis, years and years ago. All this brain biofeedback seems to be improving my working-writing, things like summaries as opposed to books or essays, in addition to my cognition. Nice surprise!

And lastly, for every post, I have to choose topic(s). Not so simple since PT doesn’t have anything related to brain injury. No concussion. No traumatic brain injury. No stroke. No brain hemorrhage. I decided on Resilience and PTSD for my first post and ran them by my editor. He suggested trauma for future posts. That made sense since my brain injury was from trauma. PT has discussed adding concussion to their list of topics. I hope they add it soon! In the meantime, please check out my profile where you’ll find a list of my posts, books linked to Amazon, and online presences. And you can click here to read my first post.

Books

BIST Community Fair and Expressive Art Show — A Buzzing Blast!

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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.