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!

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.

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!

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

Books

My First Talk on Writing After Brain Injury

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For years, I’d overheard conversations about CHIRS at BIST meetings but didn’t exactly know what it was, other than it seemed to be a place where people with brain injury hung out. When CCAC discharged me – for arbitrary time reasons not because I no longer needed community care – on the contrary I needed it badly – they discharged me to CHIRS. Like anyone with a brain injury, I don’t do well with change. It didn’t help that I felt like I was being dumped by the government and medical establishment into feel-good-while-you-rot-out-of-sight-of-us-the-people-who-have-jobs-and-power-and-so-matter-unlike-you day-program denizens.

My CCAC therapist eased me in, coming with me to the assessment and my first CHIRS group. It took me awhile to adjust, but I came to look forward to seeing the staff who run the group and my fellow inmates, uh, I mean the clients with brain injury. (Really! Some days you feel imprisoned in your injured brain.)

Unlike the others who knew other clients, many of the staff, and the way CHIRS works, I only knew my group at CHIRS. I bypassed the noisy central meeting hub because it overwhelmed my senses.

But I soon learnt that everyone there was kind, welcoming, thoughtful, generous.

The point of CHIRS, unlike CCAC or Cota, is to provide services to people with brain injury indefinitely because they understand that it’s an injury that never goes away and its needs ebb and flow and never leave you.

The CCAC – and the clinics and doctors who see people with brain injury – practice of seeing clients for a pre-determined period of time instead of in accordance with health needs is medical malpractice IMHO.

Anywho, I say all this because after I decided to update Concussion Is Brain Injury, I got to know CHIRS even better.

First, the staff wholeheartedly supported my crowdfunding efforts, unlike the hesitant support from BIST (rather ironic, since while individuals are totally, fully behind me to my eternal gratitude, others seem more concerned about optics or whatever is bothering them than the fact I’m writing this to help the members. I’m certainly not killing myself over this book for my benefit!) Then, I was introduced to a staff member who wanted me to present to the club – that noisy central meeting place I usually avoid!

CHIRS wanted me to talk about writing before and after my brain injury and about crowdfunding Concussion Is Brain Injury. I was told that a couple of CHIRS clients want to write but had felt they couldn’t because of their injury. They needed to hear from someone who had given the middle finger to being told you can’t write anymore and had spent years relearning to write and has now got a few novels under her belt plus is working to try and update her book on brain injury.

Sure, I said.

My injury has given me the ability to speak publicly sans embarrassment or nerves. As I told the group, the person who existed before the brain injury, well, her red face, shaking legs would’ve telegraphed her desire to hightail it while speaking publicly. Me: am loving it. She also would have been reading her speech verbatim. Since I cannot read and publicly speak at the same time – other than reading one of my chapters – I must prepare well enough to be able to remember it.

Fatigue got in the way.

I got my main points down, thought about relevant details, but trying to review it close to presentation time – Oy! Not happening. Words pinged off my forehead like it was made of rubber and laughed at me for trying to read them.

So great relief when I realized the man in charge would ask me questions throughout my talk. All I had to do was answer them! I can do that!!

As I’d anticipated, club members wanted to ask questions throughout my talk. They politely raised their hands not simply blurted out the questions, although I could have handled the latter, being a member of the say-the-thought-before-it-disappears club.

Question: Did you write better before your brain injury?

Answer: My mother says I write better now.

Question: Will you remember this in 3 weeks?

Answer: Ummm, broadly, yes, but not details (thinking: smart question; only someone with a brain injury would think to ask).

Question: What if you get only $4,000 in pledges for Concussion Is Brain Injury?

Answer: Um, without marketing funds, which $4,000 won’t cover, no book sells. I’ll try but …

Question: How do I know what I’m feeling?

Answer: (This question got to me, for I hadn’t heard my own agony reflected back to me before.) You write until you see your emotions come out onto the page. Your arm and hand will probably be killing you before then, but just keep writing.

Question: What’s your name?

Answer: Shireen. (Hey! It’s an expected question so don’t be shy asking, and I don’t mind answering a gazillion times!)

I had a lot of fun. The guys were welcoming (most of the club members there were men), they had a seat all ready for me, but I chose to stand because, yeah, it’s tiring, but I can speak better that way. They had the computer ready for me too so that I could show them my and other relevant websites. They got a microphone so if my puff power faded, I could still be heard by the large crowd all the way to the back.

As I spoke, I could feel the energy change from polite attention to enthusiastic engagement with what I was saying. It fed me, and I left buoyed up by the last thing one writer said to me: what he took away from my speech is to never give up. He thanked me.