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

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.

News

Going to the CNIB, Talking Vision and Brain Injury

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Accessible Pedestrian SignalWhen 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 have.

Greatly.

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!!

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/867450250092568576

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

https://twitter.com/ShireenJ/status/867414767882862592

https://twitter.com/ShireenJ/status/867414215727906816

Bookstores

Boxing Week Sale on My EBooks

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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!

Memoir and Biography

Concussion Is Brain Injury 75% off:

https://www.smashwords.com/books/view/749629

Lifeliner 75% off:

https://www.smashwords.com/books/view/15191

Novels and Short Story Collection

She 50% off:

https://www.smashwords.com/books/view/63083

Time and Space 50% off:

https://www.smashwords.com/books/view/322309

Aban’s Accension 50% off:

https://www.smashwords.com/books/view/369004

Eleven Shorts +1 50% off:

https://www.smashwords.com/books/view/82913

*Smashwords calls it their End of Year sale, but us Canadians know it’s really Boxing Week!!!

News

Join Us to Protest for TTC Accessibility for All

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Accessibility of all kinds is pitiful on Toronto’s TTC.

Wednesday, August 31, 2016 at 4:00pm
Please join us at Yonge and Bloor
To protest this blatant injustice towards our most vulnerable citizens.

When you protest the TTC’s abysmal treatment of the disabled, we all win!

D!ONNE Renée is the organizer behind this event. If you have any questions, want to throw your virtual support behind her, or have comments, reach out to her via email or on Twitter at @OnElectionDay.

 

The announcement reads:

Accessibility is a Right — Not an Option

On Wednesday, August 31, 2016 – Between 4pm – 8pm, on behalf of community and Public interests, an #AccessibilityNow! TTC campaign/protest will take place starting in the Yonge and Bloor area to raise issues concerning discrimination based on disability, barriers, and ableism in transit and its services.

The Accessibility for Ontarians with Disabilities Act sets out the interpretation for “barriers.” Too many barriers exist within the TTC. It is not acceptable to take a “minimum/at least” approach in improving access for all. The standard should be a model that reflects an equal to or greater than the access that is currently available, model. The equal to or greater than the access that is currently available model is a model of equity and equality.

People have a right to access public systems; in this right, people should feel that they have the option to be free to choose whether they access those systems or not. We are all not free just to be.

Approximately 35 out of 65 subway stations are “partially accessible,” on good days. Functioning equipment = good days. “Partially accessible” means that all patrons don’t have the option to access the system for lack of elevators, Braille information and helps, proper signage (large print, clear, large-enough digital boards), functional escalators, inaccessible entrances/exits (now including Presto Card gates and readers) to subway stations, buses, streetcars, and extraordinary Wheel Trans wait/scheduling. Plus the TTC worsened accessibility when they began replacing the names of Toronto’s subway lines with confusing numbers.

TTC (and transit across Ontario and Canada) must be proactive in its operations and provide equality in its services and not discriminate against anyone, including people with disabilities and/or people requiring accessible access in order to use its systems. TTC was able to find money to implement Presto Card systems into its subway, bus, and streetcar services even though the gate systems being used at subway and bus stations are all not accessible; but TTC seems to be unable to be actively proactive in ensuring that all areas of TTC are fully accessible.

While this event will take place in downtown Toronto, the issues and concerns being raised affect all of Ontario and Canada. We want everyone to have the ability to travel independently, or in group, as we so choose.

We want a barrier-free Canada.

Will you help?

Will you join the protest and invite others to do so too? Will you gather with community in accessibility advocacy? #AccessibilityNow #GetItRight #AODA #AODAFail

Books

Concussion Is Brain Injury Crowdfund Over: The Writing Begins

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End of Crowdfund Campaign for Concussion Is Brain Injury Update

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.Concussion Is Brain Injury

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.

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).

Camp NaNoWriMo 2016

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!!!