Concussion is Brain Injury

First Amazon Review For Concussion Book and It’s Five Stars!

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I browsed over to my Amazon page for Concussion Is Brain Injury: Treating the Neurons and Me (Revised Edition) to link it for a tweet or something and was about to close it after copying the link when my brain finally registered what my eyes were seeing: stars!

Stars?!

Holy —-, stars! Five of them!!

I got real confused. I shouldn’t have. After all, I’d begun a marketing promo to try and sell copies and hopefully get a review since people who’d read it had reviewed it in paper notes or to me personally. I really liked the paper notes — I’d read and reread them and there’s something to be said for their tangibility! — but they don’t let anyone know that maybe my book is worth reading like online reviews do.

I scrolled down and read. I found it hard to breathe and blinked hard. I’m so grateful for the reviewer taking the time to read my book and writing a good review — good because they understood what I was trying to achieve and wrote more than a couple of sentences. The word gratitude is inadequate.

Read 1 Books Reviews – Amazon.com
— Read on www.amazon.com/Concussion-Brain-Injury-Treating-Neurons-ebook/dp/B075XJK767/ref=mp_s_a_1_1

Concussion is Brain Injury

Ground Hog Day?

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BrainGirlAndCat does video blogging. She used to be on Twitter, and I came to know her through BIST, I think. The Brain Injury Society of Toronto recently tweeted out her latest video.

BIST (@BrainInjuryTO)
2019-07-08, 9:45 AM

“Every day is like Ground Hog Day,” From her home in Ireland, Brain Girl shares the story about the emotions that come up after finally getting an neuropsych assessment 7 years after her TBI. ⁦‪@ShireenJ‬⁩
– we think you may have some things to say about this
braingirlandcat.com/2019/07/06/whe…

https://youtu.be/kglHjd87ozI

It took me awhile to get to it. I have routines, try to schedule tasks or ToDos, try to keep to my schedule, but maybe it would be easier if my life was like Ground Hog Day. It isn’t.

There’s always something. A jackass, always one around in a city. Mice peeking out at me. Drivers whizzing up to the pedestrian crossing to block me safely crossing just in case they can insert themselves into a stream of traffic. My brain suddenly deciding not to read. Me having to think hard about which part of my routine I forgot and fix that to get reading again because no health care professional nor anyone I know in my social life wants to learn my health care routines because, you know, learning outside the box is hard and only the person with brain injury should have to do that. Giving up reading and practically the next day being catapulted into a life-altering reading comprehension program. Receiving my very first review of my revised concussion book. Promised money not coming through and digging through pockets and counting dimes because I really gotta have my coffee. Back in the early brain injury day, it would be creating minor fires or floods because of my slow processing. Now I just create floods because I still can’t process what my senses are telling me and problem solve quickly enough. Fun times cleaning up instead of staying in my usual routine . . . well, when does my usual routine stay monotonously the same? People suddenly pop into my life, change my routine, sometimes disrupt it, then disappear. Definitely not Ground Hog Day around here.

I can so identify with lack of joy, though. I almost had it. Almost touched it. Almost.

Concussion is Brain Injury

Camp NaNoWriMo?

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Ever since my CCAC therapist left, the one provided by community care under medicare, at about the same time my parents left the city, I haven’t succeeded at Camp NaNoWriMo. It was difficult as it was. I worked hard to ramp up to doing both Camps in April and July, in addition to NaNoWriMo in November, and could only ramp up because of health care and parental support. In fact, my therapist believed so much in my ability to write three books a year, that her belief in me rose me up over fatigue, my brain-injury related reading and organizational problems, and other issues that made writing every day quite exhausting. When you believe in a person and act out that belief, you empower them. No one else has come close to what she did for me because she initiated action based on her belief.

When therapist and parents left, my brain-injury issues plus PTSD suddenly exploding blocked me from starting or, if I managed to start, finishing Camp NaNoWriMo.

That may sound like a cop out, but cognitive work, being productive, initiating, deciding things, being organized, are complex brain functions. We don’t think about them as adults because the brain learns and makes automatic these functions as we grow up over 21 years or so. Going back to year one after concussion is a bit disheartening and needs all-in support and treatments to get back to adult automaticity. Trauma, bad memories, flash up a big stop sign to it all, as well.

I’m rambling.

I think I’m going to try Camp NaNoWriMo again. Ever since I fired him then had a talk with and rehired him, my neurodoc has become actively supportive, helping me with my reading practice. He’s also the only one to occasionally prod me to write an article for Psychology Today. This past November, for the first time, he took my NaNoWriMo writing month seriously. Previously he thought it was just some trivial thing that if I didn’t succeed in writing during it, I could write another time, and I was just being rigid minded if I got upset about being unable to write during NaNoWriMo because of exhaustion and/or PTSD. He’s now understood it’s a critical filling in of cognitions my brain injury took from me. The only substitute for NaNoWriMo are humans who sit with me several times a week, like during the ten weeks medicare granted me help to write Concussion Is Brain Injury: Treating the Neurons and Me.

My neurodoc said he could help me with sticking to Camp. I have no great expectations. I’m setting the bar low and a goal for something I really need to do: update the pages tied to the Learnings chapters of my concussion book. I’ve learnt a few new things since I published it, especially in reading, as regular readers would know!

I’ve left signing up almost to the last minute. I haven’t yet identified all the web pages I need to update or figured out a schedule. This kind of prep is what my CCAC therapist would get me to do. Don’t just think about it – write it down in my calendar, outline it on my iPad, set up files on my computer. And sign up!

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.

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