Books

Concussion Is Brain Injury II Off to the Editor’s

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I laid it all out, every particle of energy, every neuron corralled in the effort to finish my manuscript by the June 9th deadline. I could’ve gotten an extension, but mentally, the thought of working beyond my capacity for one more day slayed me. I’ve been working beyond my capacity for over a month, and as long as I kept going, I could keep going. But now I’ve stopped, my body has risen up and puffed my eyes, stuttered my voice, pounded my heart, weakened my muscles, and wrung me out. Used to be kind of scary shit, but for the first time, I felt pleased at completing a nonfiction book. Satisfied. I’m not disappointed at a goal unmet again. Nor did I feel like it wasn’t what I envisioned. I also had people work with me every day or every few days. It’s less lonely working on such a difficult book — my hardest one yet — all on one’s own. Having people to riff ideas off of, to pep me up, to schedule me, and keep me going through the tedious parts of writing, made a huge diff. Having an editor provide solid work gave me confidence and a feeling of standing on stable ground.

In the end, it’s good for one’s esteem to have met deadline. So it was worth it.

The day before deadline, a week after two days of the worst nausea I’d had in a long time, my brain made the last connection in new pathways, and I experienced a major uptick in organizing thoughts — I was able to see how chaotic a “Learnings” chapter was and to bring order to it — and a few hours later, an uptick in understanding — concepts that I either had sort of understood or had no clue about suddenly came into razor sharp focus. Needless to say, the new ability to think and understand meant I had to go over chapters I thought I had finished. Not satisfied with the workload, my brain decided to up it.

So Concussion Is Brain Injury II: Treating the Neurons and Me is one step closer to being published. If you want to be part of the process, get a peek at deleted scenes, or an early copy, please check out my Patreon page: http://patreon.com/ShireenJeejeebhoy

Now to work on the cover image!

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!!!

Concussion is Brain Injury

Gaining a New Purpose for Concussion Is Brain Injury

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I attended a unique all-day conference featuring Dr. Norman Doidge and Dr. Lynda Thompson on #HealingtheBrain that brought together survivors, medical professionals, lawyers, and insurance representatives to learn about and discuss a totally new way of treating brain injury. I live tweeted most of the day – my way of taking notes plus share with the world. And I talked to several about the exciting things we were learning. It was exhausting, but I gained a whole new purpose driving my writing of Concussion Is Brain Injury. I have 2.5 weeks left, and suddenly what’s driving me is not the deadline to get it to the editor but what I want to say!

Books

Edits are Back!

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Well, I got back the developmental edit of Concussion Is Brain Injury. As expected, my editor did a bang-up job. Hard questions, detailed comments, nit picky on the grammar and punctuation in the way all good editors should be. Awesome! But also really, really tough for me because of the thinking and decisions involved. This isn’t just a story about fictional characters; this is my life that intersected with other lives. This is about real relationships and real events and real harm. From my perspective and relying on written sources and materials, ’tis true, yet the emotional challenge it creates is almost paralyzing. Plus all the reading!

It took me two days to read my editor’s cover letter once. Now I have to go through it properly. I’m thankful CCAC is supposed to give me another four weeks of help to plan the work and organize it so that I can discern and address each question, each point systematically. I have a few days to prepare before our first appointment. I’m using these days to try and skim bit by bit the editor’s comments in the manuscript and, as well, to set up my Patreon Creator Page because I apparently don’t have enough to do. Ahem.

I badly need a monthly income so that I can get my writing done and out. Although I’m focusing on Concussion right now, I have manuscripts piling up on my hard drive that are crying out for editing and publishing — and most of all, marketing. I’ve been studying what successful Patreon Creators do and trying to follow all the instructions. I started this without absorbing the dates! That my manuscript would be coming back soon, I take longer than normal to get things done, and, hello Shireen, once again taking on too much!

But my emotional work has gone to hell. My neurodoc seems to have lost the thread of who I am and what I need, and I’m being forced into the untenable position of having to work on my book sans the experienced, compassionate guidance I was promised and dealing with the emotional fallout mostly on my own. Unless someone, like God, smacks him awake to what he’s done, the only recourse I have is to rely on the limited but excellent CCAC health care people and my brain trainer and then the rest of the time overload myself with work to distract myself. Distraction therapy alleviates emotional hell in the moment; but it’s not possible when fatigue hits. Since that happens a lot when I’m writing, I also turn to Netflix. Distraction therapy doesn’t fix anyway. Witness all the kids who grew up during WWII (outside of protected North America), are retiring now, and falling into rage and emotional turmoil from WWII PTSD because there is no more work to distract. Except for a couple of events, I am not looking forward to the next 6 weeks.

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!

Brain Biofeedback

CCAC Support for Finishing Concussion Is Brain Injury Update

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I met last month with the CCAC Clinical Director (I think that’s his title) and my new CCAC care co-ordinator, the one for Acquired Brain Injury (ABI) for the entire huge city of Toronto.

I’m gonna get help!

After my eye surgery, all my plans for updating my book Concussion Is Brain Injury flew out the window as my new vision, a reorganizing brain, and a seemingly extremely long but apparently normal-for-my-brain-injury recovery period began to make me feel that I had committed to an impossible task. No longer having support from CCAC only made it worse. In 2015 and 2016, my neurodoc had promised me he wouldn’t let me fall through the cracks. But he did.

Then last Fall he woke up to where the cracks had lead me, wrote a letter, and followed up all on his own sans me nagging until CCAC responded.

After my Cogmed training ended, the two from CCAC came to my place a second time to confirm that I would have six weeks with a behavioural therapist and behavioural assistant to help me get my manuscript to my editor and then another four weeks after I had received back my editor’s structural/developmental edits to help me get the manuscript polished.

It may seem strange that I need help writing my own story. But unfortunately, even though I lived it, I cannot see the “big picture” of my book, cannot see where the holes and repetitions are. I cannot organize nor do the background reading in the same way a person sans brain injury and vision changes can.

I am rereading Concussion Is Brain Injury with my neurodoc and mother as part of my reading rehab in order to refresh my memory. I had taken a break from that while I was reading a novel for review as part of my reading rehab. Unfortunately, when we returned to Concussion, I couldn’t recall its reading rehab routine. My rehab is scattered among several people, none of whom know what the other is doing and all rely on me to keep track of the big picture. Both of the logical health care professionals who could oversee my care won’t: my neurodoc refuses to lead in this area as it’s not his usual style and would require learning new information about the brain and treatments, and my GP has left me to my own devices. And so it’s up to me to remember the details of my entire rehab. What was that I was saying about my inability to see the big picture? Yeah. Sigh.

Anyway, naturally I forgot the method we were using for reading Concussion Is Brain Injury and, as well, how immediately after the reading session, I’d launch Scrivener in order to edit, delete, or update the sections we’d read.

How we read it slowly returned to memory; this past week I at last remembered the post-reading session routine and have managed to update my book a little bit. My neurodoc also decided to become more active in learning about my updating routine and reminding me to do so.

I’m hoping that as improvement continues after Cogmed, that my memory will work better and expand that big picture ability. Even if I can never improve enough to “see” my book in its entirety, in one conceptual image, hopefully I’ll be able to remember and hold together all the strands of my rehab.

Anyway . . . CCAC is sending me a behavioural therapist who’ll see me weekly and will organize my writing and editing schedule, will see the big picture of my book for me and help me organize what I need to write or delete, and will co-ordinate an assistant who will help me with all the tasks in writing and producing the updated version of Concussion Is Brain Injury. Maybe this person will also be able to read and summarize the research for me! That’d be cool!

In the early years after my brain injury, I had someone here and there to help me do my work or organize my space. But then that petered off. And I was left wishing and wishing I had enough money to hire an assistant, even a virtual assistant. And then I just gave up and accepted my functionality was always going to be less than. Less than what I desired, less than what I needed to be part of society so that I wouldn’t remain the rest of my life on the periphery like people with brain injury usually are.

Suddenly, I have an assistant for a maximum of 10 weeks, and I have so many needs, my mind went blank as to what he could do.

I’m writing a list as writing-related tasks come to mind so that I’ll be prepared for our first meeting. It’s a tight deadline, six weeks, but I’m a quick writer. My two fears: my poor reading ability and my fatigue. Can I keep up this intense cognitive work for the whole time? By the end of NaNoWriMo, which is four weeks, I’m kaput. There is something energy-giving and focus-sustaining about working in proximity to other humans as I discovered when I found reading out loud to a fellow human meant I could read more, read quicker, read easier than when doing it alone. And so maybe I can keep going for that extra two weeks because, unlike NaNoWriMo, I’ll have someone beside me two or three times a week.

My brain trainer and I have decided that I’ll begin to go weekly for brain biofeedback in order to facilitate my writing. But if fatigue gets too much, I’ll return to biweekly until I submit my manuscript to my editor and have recovered some of my energy. It’s such a balancing act to get the help you need without being exhausted by it!

Health

I Support AODA Alliance’s Finalized Brief on Barriers to Health Care in Ontario

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I wrote the government at aoda.input@ontario.ca the following email to support AODA Alliance’s Finalized Brief on Health Care Accessibility Barriers. Join me and email them to; just one sentence to say you support the Brief is all that needed. Read more on the Alliance’s website.

I support AODA Alliance’s Finalized Brief on Health Care Accessibility Barriers.

I’d like to add that being able to access health care isn’t just about being able to get into a clinic or doctors office, but also about being able to have the doctor come to you when you’re unable to leave home due to the nature of your illness or recovering from surgery or type of disability. Telemedicine allows a person to receive timely and good health care.

This is especially important in mental health care.

Conditions such as OCD, depression, ADD, agoraphobia could be treated better if the physician could begin treatment in the home through telemedicine. The physician can see the living environment and understand the complexity of the condition better; the patient wouldn’t have to recover well enough to travel and get to the clinic on time just to receive some treatment; the physician could better guide the patient to leave home and eventually receive treatment in the clinic; and the physician would not have to spend time travelling, allowing for more hours to see more patients.

Not paying for laptop to laptop telemedicine excludes patients who can’t get to OHIP-designated centres. And wastes a doctor’s time by forcing her to travel if she’s not at an OHIP centre just to talk to and see her patient.

It isn’t only patients who live vast distances from their doctors who need telemedicine. It’s also the thousands who forego health care or receive diminished care because they can’t leave their home or they can’t get to the clinic for whatever reason. 

Dropping this artificial barrier to telemedicine will ultimately cost the system less and speed up health recovery, leading to faster return to work and taxes to the government.

Accessibility is a right not an option and benefits all Ontarians.