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

Patreon Quest

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In my never-ending quest to find a way to earn an income with a brain injury that keeps interrupting the flow, I’ve joined Patreon. It’s a nifty way for readers who like my books and my blog to support me, like the patrons of old, except for as little as $1US per month. Many artists, even musicians who get much airplay, have joined Patreon because in today’s fragmented publishing world, it’s difficult to make ends meet. Throw in a brain injury that saps your energy so that all you have left is just enough to write but not enough to market, and it becomes impossible. And from the recent controversy over cultural appropriation, you may now know that the Canadian publishing scene is not exactly friendly to minorities either. A seminal moment for me on that score was the withering stare, like I shouldn’t exist, from a major publisher. Fun times.

Anywho, if you like my blog, enjoy my tweeting, get engrossed in my books, want to see Concussion Is Brain Injury succeed aka sell well, or wonder why new novels from me are no longer appearing on virtual bookstore shelves, please check out my Patreon Creator Page and consider supporting me. You’ll be rewarded, for sure!!!

Books

Joining Patreon While Waiting for My Editor

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Yikes! Less than a week until I find out what my editor thinks. She’s very particular and observant, always asks me tons of questions, pushes me to think more, add and delete stuff — all things a good editor does! But it can be a little daunting upon first read through.

During this down time while I wait for my editor, I learnt of Patreon and have been pondering joining it. A fellow writer I follow on Twitter sent me an invite after we chatted about it. This week I plunged in and began working on my Creator Page. I have no idea how people can set up and launch their page in a day. They must have a zillion fans ready to go, have no trouble writing a description, and can whip off an intro video in no time. Ack! Not me!! I’m trying to think how I can get out of doing the video, but they say it’s essential for success. So gotta do what you gotta do, eh?

The other sticking point is the rewards. What can I give that I can sustain and people will enjoy? Hmmm. It’s the sustaining part that’s tough for me because, you know, brain injury. Those of us with it live in fear of our dear brain suddenly belching to a stop after trucking along nicely for months. And then there’s the PTSD’s nasty habit of freezing me. Only a human being can prod me going for a few minutes or hour, enough to write a little or something. But I have no humans in my life to do that, only the CCAC folks for four weeks in May to help me with the edits for Concussion Is Brain Injury. If only I had the money to pay privately for such help every week . . . Well, I guess that could be a Patreon goal: therapeutic help to ensure I can keep writing through brain injury belches and PTSD freezes!!!

Books

Manuscript for Concussion Is Brain Injury II Submitted to Editor

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I made my deadline! I submitted my manuscript for Concussion Is Brain Injury update to my editor. She’s now doing a developmental/structural edit — looking at the big picture, content, storytelling. Grammar and spelling edits come in the final copyediting round in June/July.

The last week to meet my deadline was deadly. I’ve not worked so many hours since my brain injury, and even though Cogmed increased my mental stamina substantially, my body couldn’t handle it. Thermoregulation went out of whack — too hot and burned and feeling of cold burn in my fingers and feet — edema, and that opportunistic infection shingles burst out of the inactive chickenpox viruses in my nerves. So much fun. My hands hurt (less now but still do), and I couldn’t think well outside of my book. My vocabulary in conversation is still a little shot. I didn’t go out, walk, or do some of my daily living routine for a week because no energy left over to do them. I took lots of Star Trek: Voyager breaks in between chapters or scenes or ideas — Voyager is familiar from before my injury so little cognitive action needed on my part to watch!

I didn’t expect how euphoric I’d feel seeing the word count dropping just below 100,000 and hitting Send on my email to my editor. Felt soooo good. And the feeling lasted a couple of days. What a contrast to Lifeliner. Back then in 2007 my affect was still mostly flat plus working on the book had been delayed twice, the second time by 7 years so I was just relieved to have finished it. This time relieved AND pleased with myself.

Although I’ve been calling this an update, it’s turned out to be a major rewrite to the point I’m adding a subtitle for sure and am almost wondering if I should change the title . . . Nah. I like the title!

Well, I got 4 weeks off. What shall I do? Check links!

Books

Writing with CCAC Therapists: A Concussion Is Brain Injury Update

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I’m partway into my 6-week sortie to the past, writing my Concussion Is Brain Injury update. During the early weeks of my recovery from eye surgery, I drew a new outline. Over the months, as my eyes were able to perceive text on the iPhone then wider high-resolution iPad in portrait mode, I put it into Scrivener, copied chapters from the original Concussion Is Brain Injury and moved, merged, cut them. But the surgery did something to my writing too. My neurodoc agreed: it was simplistic, he said. I felt like all the colour of my writing had been flattened into grey, with my words grinding out slowly. During NaNoWriMo, the long fingers of the surgery and general anesthesia loosened their grip on my writing; my creativity began to re-inflate.

But my chapters were still disorganized, my writing wasn’t back with all its colourful speed. I wasn’t able to read what I’d written, although I was reading my old chapters with my mother as a way to recall what I’d written back in 2012 as well as to practice reading.

Reading! Pfft. It’s always practice practice practice. Trying to get it back. But I digress.

My neurodoc wrote CCAC last Fall, telling them I needed help. I’m not sure how many weeks it took him to write the referring letter or how many his secretary spent trying to get them to acknowledge and respond. But I finally had a meeting with the Clinical Director and the sole Toronto-area Care Co-ordinator for brain injury — the only one left because that’s how community care for ABI rolls under Premier Wynne’s vaunted funding increase. Let’s cut what’s already too little. But I digress.

We waited until I’d completed Cogmed, gave me some time to recover and then chose the right behavioural therapist for me. They asked me for if I preferred the behavioural therapist assistant to be female. I didn’t care. Apparently women prefer other women for creative work. Maybe because I’ve often been mistaken for a guy (not in person at least!) and I was brought up in a culture of true equality, it doesn’t matter to me. Then I blurted out, well, not a white male. Me and white male health professionals seem to lock heads. That got a laugh! Nope. He’ll be Indian. Oh cool. My people!

Not really; more like the people of my childhood turning up in my life decades later in Canada. Anyone with Zoroastrian relatives is really my people — culturally. But Indian is close enough. Canada and Canadians in all their multiple glories is where I belong though. I wouldn’t want to live anywhere else. Paradise is what we immigrants call it. But I digress.

In case it’s not clear, I’ve gone from post-surgery fractured memory that sealed itself back up to wandering, distracted focus. I think that reflects the heavy cognitive toll of writing my book’s update.

Anyway, the BT and BTA (don’t you love health care acronyms?!) have been coming to my home three times a week between them for 1.5-3 hours at a time. I wasn’t sure I’d have the mental stamina to work 3 hours straight. But Cogmed seems to have increased it incredibly. Yeah, my brain hurts, my thoughts grind to a stop, but I also learnt during Cogmed that yoghurt with nuts, fruit, chocolate mix and a few minutes rest recharge me enough to keep going to the end. Then I could really rest! Star Trek: Voyager FTW!!

So what do they do? The BT broke my book’s sections down into a schedule and divided them between her and the BTA. She talks to me about how to approach the book and helps me with the tough chapters from a clinical perspective. She gives me the courage to write and the permission to rest a couple of days. And she kicks my butt by giving me accountability for getting my word count down (which keeps going up, down, up, down. Argh!). She’s also giving me outline homework because I keep forgetting to update the outline as I go along.

The BTA sits beside me with my manuscript on his laptop and I with it in Scrivener on my iPad, and we read silently together what I’ve written. Without him there, I can’t initiate to read. I notice what I need to cut; he asks me if something belongs or discusses with me an idea until I understand what I want to say. He also gently tells me I need to focus on one chapter a time and how to note down things I come across for other chapters without leaving the one I’m working on and go haring off in a different direction. He’s reminding me to stay focused.

We go through my brain injury-related likes in Twitter together. At first, he simply emailed me the ones we’d decided were relevant to my book so they’d be in my inbox, ready to be read and incorporated. Then he noticed I wasn’t doing anything with them. That reading and organizing thing was getting in the way.

So he made me go through each one plus new ones, as many as we could get through in 3 hours, had me read or watch enough to know which chapter it belongs in then stick the link in the chapter’s Notes section in Scrivener. Now all I gotta do is incorporate!

This is absolutely amazing. Without them, my book would still be chaotic and not as well written. It probably would still be staring at me, going, well, are you going to finish writing my update?

With them, I have a submission-to-my-editor deadline, I’m writing regularly, I’ve gone through my bookmarked research links, and begun checking out images for my cover. I wish I had them until the book is published. But I feel lucky and grateful and excited I have them for the toughest part: the writing.

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!!!

Books

Good News! Crowdfunding for Concussion Is Brain Injury Extended!!

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I am thankful for the support, retweets, Facebook comments, and emails I’ve received in the last few weeks. I’m thankful that so many want to see Concussion Is Brain Injury updated. That’s why my hybrid publisher Iguana Books and I have extended the date of my crowdfunding campaign to April 10th: to give people a chance to put actions to words, to have the time to check out my page, my book rewards, my print photography rewards, and click to pre-order the ebook, the paperback, the hardcover, or a collection of some of my books.

I am confident that the story that Shireen tells is not just something that is personal to her, but will add to our knowledge and understanding of concussion.
Donald J. Nicolson, M.Sc., Ph.D, Post-Doctoral Research Fellow and Author

I’ve also been privileged to have a British post-doctoral researcher and author offer to write the Foreword to Concussion Is Brain Injury. You can read a quote from his Foreword on the crowdfunding page now, as well as praise for the original edition — just scroll down to “Praise for Concussion Is Brain Injury.”

Concussion Is Brain Injury

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Midway Through the Crowdfunding Campaign, and It’s Getting Hairy!

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SPECT ArtTherapy Concussion Final Fixed Scan White 2 Shireen Jeejeebhoy 722x258 25 Jan 2016 I want to publicly thank the many people who have encouraged and supported me in my efforts to update Concussion Is Brain Injury. Your kind words have lifted me up and kept me going. However, I’ve hit a bit of a roadblock and need your help to climb over it.

Today’s publishing world is moving towards readers essentially pre-ordering books by joining in crowdfunding. Publishers want to see tangible interest in the books they think are worth publishing before they proceed. My publisher, Iguana Books, and I believe Concussion Is Brain Injury is worth seeing the light of day, but it won’t unless my crowdfunding efforts succeed in the next two weeks. So far, we’re not even at 10 percent of the goal. Eek!

Concussion Is Brain Injury needs a rewrite to include a wealth of new brain injury research from the past three years, along with my own remarkable improvements and the methods I’ve used to achieve them. Crowdfunding will fund the editing, cover design, and the all-important marketing of my book.

this is an amazing book that really sheds the light on how little is known about concussion,and brain injuries my good friend Shireen Jeejeebhoy now  wants to publish a second edition but can only do this by raising money through crowdfunding .  Shireen Jeejeebhoy  has new ground breaking new material that challenges the status Quo about brain injuries and needs to be read and heard” – Nancy Howson as shared on Facebook.

Seeing readers who’ve put their money where their interest is will spur me on to write faster, which as you know can be a challenge with brain injury. But I’m up for it, to get Concussion Is Brain Injury out and into readers’ hands by the Fall. Are you?

If you have any questions about the book or PubLaunch, please don’t hesitate to email me through the yellow button on my PubLaunch web page or leave a comment on this post. Thank you for reading this and considering participating in my quest!!