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/867441316992569345

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!!!

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

Crowdfunding for Concussion Is Brain Injury Crawling Along

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Crowdfunding is so risky. You’re seeing if anyone is interested in reading your book before you even put it out, or in the case of my biography/memoir Concussion Is Brain Injury, if anyone is interested in reading an update. Many indie authors are excited about crowdfunding, but I always was wary. I’ve taken risks with my health in order to get better, but publishing my writing . . . not like this! It’s 10 days in, and it’s not going so well. Kind of disheartening. I’ve received wonderful encouragement, notes of congratulations, supportive messages but so far, only 10 tangible backers — only ten people and organizations have said with their cash that they want to read Concussion Is Brain Injury and believe it’s worth backing.

How about you? Are you thinking about it, wondering if this is just another book on concussion — yawn — or still mulling over whether to back it? How about this, how about another excerpt? Will that help? I hear a resounding Maybe! So here it is:

Waiting, Waiting for the Worst News

April 3rd, I had my first IME: that’s Independent Medical Exam for those of you blessedly innocent of the medicine-through-insurance-company system. The idea is that after you are injured in a car crash, your doctor refers you to a physiotherapist, say, and the physiotherapist fills out a treatment plan for the insurer. Since naturally the GP you’ve been seeing for years can’t be trusted to know your health, the insurer, with governmental blessing, sends you to a doctor who knows squat about you because that way they can be trusted to advise what you really need. And to ensure true independence, the insurer pays the IME doctor so that s/he has zero obligation to you, the suffering claimant, under the do-no-harm rubric of society.

My first IME arrived the afternoon of Monday, April 3, 2000.

I was riddled with anxiety the night before because this IME was happening awfully early in the process. I’d been through Ontario’s insurance accident benefits system nine years earlier. I had a sense of how this system of expert-versus-expert worked, with me and my health care team struggling against it to make me better.

It’s horrible.

SPECT ArtTherapy Concussion Crowdfunding 720x258

It’s a ritual of being told the date of your appointment and being told you have to show up, even if it means cancelling the medical appointments designed to get you better. It’s a ritual of the doctor examining you in such a way so as to determine you are fine. It’s a ritual of pain, confusion, fatigue that attacks your honesty and your health, yet if you don’t remain calm and be co-operative, you will be blackmarked. That means denial of your treatment plans — the lifeline to getting better. It’s a ritual of waiting to hear the verdict while reports are written and the insurer decides if they’ll pay the clinic or therapist to continue to heal you. It’s a ritual of you begging the therapist or clinic to keep you on while we all wait — or after the plan is denied so that your treatment won’t be interrupted, for interrupted treatment means setbacks, maybe even permanent disability.
But I knew the system. I knew how to behave, what to say. I knew how to protect my muscles and other parts from being re-injured. Yet I felt completely overwhelmed, terrified that the IME would derail my plan of action to get back to writing Lifeliner.

Between the severe pain in my right injured shoulder and my fear, I couldn’t fall asleep the night of April 2nd. I remember lying on my back, praying for release from this hell. I couldn’t fathom why the insurance company had scheduled it only two or so months after my crash. In my experience, they usually waited longer before they began the IME ritual. Maybe it was because I had successfully fought them for good treatment and income support after my 1991 crash when they had begun questioning my treatments. Maybe they recognized me as a claimant who would not be deterred in my fight for my health and who knew the real expense of treatment and lost income. I don’t know.

I only felt confusion and fear.

And then . . .

I sensed God’s presence over my head like a golden light looking down upon me. It reminded me of when I was six years old. I was sitting on the floor in Sunday School with the other children in this new land my parents had brought me to. I was probably sitting lotus style, for I hadn’t yet mastered cross-legged though was trying to in order to fit in. One of the mothers sat on a chair in front of us, her acoustic guitar on her lap. I stared at her straight black hair shining in the sunlight while her voice sweetly trilled one of the songs I was coming to know: “Jesus Loves Me.” The other kids were singing along with her. All of a sudden I felt Jesus near me as if he was a golden light around and speaking within me. I knew without a doubt that Jesus loved me. It didn’t matter that I was considered a brat, bossy, stubborn, relentlessly asking questions, too dark, too light, too small — it took over a year for me to catch up to the nutrition status of Canadian children — Jesus loved the whole of me. And then the presence was gone. It was back to normal in that room — except that my heart sang that at least one being loved me no matter what.

All that ran through my mind as I stared up at the ceiling in April 2000 and felt that almost-long-forgotten presence as God reassured me and stopped the thoughts running around my head like a hamster on a vicious wheel. It would be all right.

I slept.

That treatment plan was stamped approved.

I continued my physiotherapy and acupuncture and psychology appointments.

And my relationship with God changed dramatically after that.

A good thing, for it wasn’t long before the news worsened.

I had no idea when I went in for my regular weekly appointment with my psychologist that he’d be changing my life from one of planned rehabilitation to one of waiting. Waiting. Waiting. Waiting.

For the worst diagnosis in my life.

Luckily, I had no affect — that is, no emotions.

My emotions had been severed from the rest of me. Sometimes they blew through a short circuit in my damaged neurons and rocked my world into a bawling mass of pain and confusion. But most of the time, they slept. So that’s how I waited: anxious, forgetting about it, no feeling, disbelief.

Oblivious in a way.

The day my psychologist sat down in front of me, leaned forward to look at me eye to eye, and told me what he believed — that I had a closed head injury and needed to have my physiatrist refer me to the right specialist — I did what I was told. I did it though I couldn’t comprehend his calm bombshell in any way other than intellectually. You have no idea how much your emotions help you think until they are shut off like a dried-up well. Yes, I understood his words. Yes, I followed his instructions. Yes, I acted and spoke and told people as if I understood what he’d said, as if I believed what he said. The logical part of my brain continued to work, albeit glacially; it told me his diagnosis made sense.

But I couldn’t absorb it.

And so I forgot about it.

I returned to rehabilitating my neck and shoulders. That I understood, for I had suffered similar whiplash and seatbelt injuries in 1991. I knew who to see, what to do. I knew about the métier of insurance companies. I knew about keeping on top of the paper trail. I knew everything.

But I didn’t.

When my psychologist told me he had to teach me a visualization exercise to reach the peace deep within me, for I would need it in the months to come, I had no idea how correct he was. I couldn’t fathom the brutal hell of brain injury that drowned my life in a tsunami that swept over me like a black, invisible monster. Even years later, I couldn’t perceive the churning waters I was in. My subconscious had no such trouble.

One day I told my psychologist of a dream I had.

I was in a cove. Before me were boulders rising out of the water. Behind and to the left and right of me lay the land. Amorphous green trees surrounded me. The black, glistening boulders loomed out of the calm water of deceptive depths to block my escape. Every time I clambered over one, another would rise up ahead of me. Always before me were ragged rows of water-rubbed round boulders and rocks, their blackness both glistened and sucked in all the light.

I couldn’t escape.

I still cannot.

The depth of the water beyond the boulders terrified me, for I didn’t know what lay beneath or if a boulder would suddenly pop up.

As I waited to see the specialist, I kept on, perceiving only the moment, following my schedule as best I could. My memory problems were becoming too obvious to ignore any more. I had trouble reading the numbers in my day timer. I could read them, yet I misread them. My attention hopped from eating to my pain to my husband’s deep voice to my dog woofing at the door to my fatigue to trying to remember what I was supposed to be doing, all in about a minute. I had to buy a PDA. I chose a Visor. This appealed to my computer-loving heart — I hadn’t yet faced up to the fact that my ability to work with computers had been severely damaged. I could still use one, but I couldn’t trouble-shoot them at all (I had always been my family and friends’ personal IT department) and typing or mousing or trying to read the screen quickly brought on extreme tiredness and pain.

By the time I got my Visor, my assessment appointment at the Toronto Rehabilitation Institute (TRI), Rumsey Centre, came up. I was still waiting for my physiatrist appointment. You would think the possibility of a closed head injury would open doors tout de suite. Nope. I waited three months for the physiatrist, about four for the TRI appointment, and then another couple for the psychiatrist.

The Occupational Therapist (OT) who assessed me at TRI said I was typical for closed head injury. She recommended I be admitted to the one-on-one outpatient neurorehab, pending official diagnosis by the psychiatrist. The logical part of my brain nodded; the coping part wept in relief that I was typical because then my experience was real and the doubting Thomases in my life would have to see my injury; the emotional part burst through briefly and decided it was having no part of this conversation.

I think after that, I didn’t talk much about it. Or think about it. I focused my fractured attention on my insurance case, my physiotherapy and acupuncture and psychology appointments, my husband’s life, and the endless IMEs I was sent to.

The day I saw the diagnosing psychiatrist, I didn’t know what I feared more: being told I had a closed head injury or being told I was malingering.

At least the wait was over.

Except it wasn’t.

The psychiatrist said he was positive I had a closed head injury. Unwittingly, he parrotted the OT when he said I was typical. He ordered a SPECT scan even though he said it would show no damage so many months after the injury. But he wanted me to have it anyway for research purposes at least.

I waited. What’s a few weeks after so many months of waiting? I was so afraid. I didn’t want to be this injured. I was supposed to be writing Lifeliner. I had been lapping up life right up until the moment of the crash, when seconds after our car had been slammed into twice, I sobbed like Job, like I had lost everything: my family, my job, my friends, myself. I had picked myself up minutes later with a plan: I would attack rehab like a full-time job and be back to writing in three months. Later, I amended it to six. Then September 2000 arrived, and I was still not back to writing and now this awful diagnosis sat over me.

When the psychiatrist’s office called me to come in a week earlier than scheduled, I told my husband in my new monotone that something was up. But I refused to face what my mind already knew. I was terrified and still worried the psychiatrist would say I was just malingering. I was a neurotic hypochondriac. All the problems I was starting to become aware of — brain injury takes away your ability to perceive yourself — were “in my mind.”

That’s what he would say, I thought to myself.

I didn’t know which was worse: to have a closed head injury or to have the people who loved me be right: I was malingering, depressed, and needed to get on with things.

I had a closed head injury.

The diagnosing psychiatrist said there was only one treatment, experimental yes, but the rest were placebos. I had two years in which to improve; after that, wherever I was at in two years forever I would remain. But Aricept showed promise to ease short-term memory problems. I needed to take it. He wanted me in the research trial, for it was my only chance.

Only one problem: it was contraindicated for people with asthma. And my asthma had returned with my brain injury like a coughing dog. It freaked me out. So taking a drug that triggers it? Shudder. My husband was furious I didn’t say yes to the drug instantly. As he drove, we argued over the Aricept all the way home. He said in frustration: I was to take it. Why wouldn’t I take it? I don’t accept his opinion. I should take it.

The thought that this was my only chance confounded me. Maybe I should take it. What if I didn’t take it? Would I be forever injured? And anyway, how could I be injured? The scan results were definitive. The psychiatrist was adamant. My psychologist and TRI were all in agreement: I was typical for closed head injury. I had a brain injury. I needed rehab and treatment.

Later, alone in the kitchen with my dog, I called up my father to tell him the news. He and I spoke clinically about my diagnosis, probable outcome, and the drug because that’s how we talk all things medical in my family. But my injury had changed me, though I knew it not. I couldn’t make a decision to save my life. And so in my new, unfamiliar state of indecision — on top of my normal way of seeing and arguing both sides first — I suggested I should take it. My father huffed: I shouldn’t take it. I don’t accept his opinion. It’s your decision.

What should I do? Whatever I did, someone would be mad at me. I didn’t want anyone to be mad at me; I only wanted to get better.

I phoned my mother at work.

You need to know something about my mother. When she’s at work or scheduled for work, she ain’t coming over or taking me to a doctor or to the ER. It’s a British cultural thing, and I was used to figuring out how to take care of myself. But as soon as I heard her voice, I needed my mother beside me instantly. My voice cracked. I heard my voice in disbelief. My voice doesn’t crack. I had mastered my emotions decades ago. When I cried, it was rare and not from zero to full blowout in an instant, and I didn’t cry in front of people. Surely, hearing this strange behaviour and awful news, my mother would come right over. Surely, she could find another nurse to take over her shift on the cancer ward for a couple of hours at least. A child in distress would be accepted.

She called my sister to go on over to my place in her stead.

My sister didn’t really know what to say. My thoughts were smothered; my emotions had disappeared again. So I didn’t know what to say either. That’s what I remember most about that time after my diagnosis: not knowing what to think or feel, except for sudden cracks when emotions rocketed out, only to disappear as the cracks sealed up again.

My best friend, BF, called. Relief. In her take-charge voice, BF prescribed tea, some croissants I had bought on my way home from the psychiatrist, and chocolate. After work, she and her husband brought me a chocolate cake. I remember the round cake frosted in waves of chocolate icing sitting high on its green plastic plate, covered by a clear plastic dome with corrugated sides. It was for medicine, she told me, not for sharing. They left. I took it into my kitchen, my dog trailing me, and ate a slice. Fatigue, confusion, fear blanketed me like smog.

I felt very alone.

Copyright Shireen Anne Jeejeebhoy 2016

Books

NaNoWriMo 2014 Begins . . . on Twitter

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I wasn’t sure I was going to be able to participate in National Novel Writing Month, which I have since 2009, this year. The thought was disturbing. But my muse came to the rescue. It said: locate a novel on Twitter. Make it a mystery. You figure out the rest. Well, I did. And though I waffled over my initial idea of playing it out on Twitter — should I or shouldn’t I? — and though I began by thinking the entire novel would take place on Twitter and ended by realizing it couldn’t — by the time I began writing Chantie’s story just after midnight on November 1st, I knew I would go ahead.

List of characters, revealed to date:

NaNoWriMo Character Twitter Avatars
NaNoWriMo Character Twitter Avatars

So here’s the deal. [Updated 6 November 2014 with questions for me, below.]

The novel takes place on Twitter, which means the characters will be tweeting at each other, which means they need their own accounts, which means, well, hey you can watch them tweet on Twitter. The only issue is that the novel includes some prose — how much I’ll find out as I write it. That prose will, for the most part, not appear on Twitter. That could make it a little incomprehensible for readers or, I’m hoping, make it more mysterious and set up conversations about what’s happening “behind the scenes.” This idea will certainly make novel writing more challenging for me. I don’t know how Charles Dickens ever got the nerve to serialize his novels as he wrote them, but I’ve always admired him and am now following in his footsteps. Eek!

I wrote the first draft of the final chapter yesterday. That will remain locked up away from prying eyes. Today, I wrote the first chapter of my novel, tentatively titled Chantie. I’m not a big fan of my title; it’ll do though. Anyway, chapter one introduces my main character Chantie Trembel, and I opened it up on Twitter with a few critical tweets giving context:



Questions and Answers
If you have any questions, tweet me!

I was debating about the timeline. I write the novel in 30 days, so should it take place over 30 days? Sort of. Because of the writing process, some of the tweets won’t be in real time. But all the Twitter chats will be done in the time they’re supposed to happen over. Where time is a factor, I will stick as closely as possible to real time.

 

I was thinking of having Bobby follow some of my tweeps, then I began to wonder if he did more than follow, if he interacted with them, how would that work in a published novel with issues of copyright and all? I’d ask before I did that and before I had his character follow anyone as well. But it could be fun!

All tweets by my characters are copyright protected under my name as per Twitter’s terms of service. “5. Your Rights You retain your rights to any Content you submit, post or display on or through the Services.”

Books

Time and Space Giveaway!

Posted on

You’ve seen the announcement, read the excerpt, checked out my interviews on my writing, and now you can enter my Goodreads giveaway for a chance to win a signed paperback copy of Time and Space. But hurry, it ends July 3rd!

Goodreads Book Giveaway

Time and Space by Shireen Jeejeebhoy

Time and Space

by Shireen Jeejeebhoy

Giveaway ends July 03, 2013.

See the giveaway details
at Goodreads.

Enter to win