I’m so excited to announce that my interview with David Byrd for American Café, Voice of America, is now up and live!
After he interviewed me about my experience and my book Concussion Is Brain Injury: Treating the Neurons and Me, he spoke to Dr. Lynda Thompson of the ADD Centre about me, the treatments, and the hope that my experience gives to people with brain injury — that there are real treatments out there that make it possible to recover! I’d forgotten how difficult it was for me to write until I heard her tell Byrd where my writing skill was at when I first arrived at her clinic. Although I want to forget how bad things were, sometimes it’s good to be reminded so as to realize how tremendously far I’ve come. Take a listen, it’s only 7.5 minutes!
I hope you will check them out, bookmark my page, and return to read my latest posts. And if you like my writing and brain injury advocacy, please consider supporting me through Patreon, the place for patrons like you!
Books don’t sell themselves. Unfortunately. You must market, publicize, convince people to write reviews for you — not rave about the book only to you. An up-to-date website also helps to sell yourself and your books. It ups your SEO on Google, a good thing as that’s how people find you. But an old-looking website plants doubt in potential readers’ minds.
So I’ve set myself a triple updating job: keep the blog pages that are an extension of Concussion Is Brain Injury updated with new info and ideas; blog regularly; and update the appearance and function of the entire site.
That last task I used to do yearly. Every year, I had to relearn what I’d done the previous year in the back end of my site: how to tweak the theme I used and how to read the HTML/CSS codes I’d copied and pasted to customize my site. Now the free — always and only use free is my motto — theme is obsolete, and I have to find a new one to customize. The problem is I feel like I can’t understand the back end anymore, it’s been years and years since I last updated (for reasons I touch on in Concussion Is Brain Injury). From my experience with SoloLearn, I know my programming knowledge is in my brain somewhere. I can relearn. But I haven’t retained what SoloLearn taught me well. Believe it or not, that is a step up. At one time I couldn’t have remembered my pre-injury programming knowledge at all, and whatever I had learnt would’ve vamoosed in minutes. So at least I can remember for a bit. It was hard to believe that though this past week as I found a new theme, tried to learn it, and all I felt was a massive wall between me and understanding.
I’m beginning this updating mountain climb with an easier site I manage. At first, the new theme was completely — I mean completely, absolutely, totally — incomprehensible to me. I’m used to clicking here, mousing there, to figure things out, kind of like how I play with my photos, trying out different looks until I find what I like. But all the options were, like, huh?‽!!! Thankfully the theme designers had made a helpful video; it just took awhile to find it.
I clicked here, played with settings there, tried and tried experimenting with almost every option to see what they would do to the site. But still the whole thing was murky. And I was seriously, painfully fatigued.
All of a sudden, I understood how their theme worked, what all the options did, how to “read” the back end. Phew.
But now I have to keep working on it, for I’ve only just begun with the basics of the site and after two days off, already began to forget how some of the options worked. I still have to relearn how to use the Events feature I installed years ago, figure out how to make some of the fonts look the way I want, and set up a gallery. And, oh yeah, why does the site title keep changing its look FFS??!!
Once I master the easier site, I’ll be set to work on my site.
If I take too many days to rest, which exhaustion probably will force me to, because with brain injury, rest is neverending, I’ll forget it all over again. Stab a fork in my eye if I have to take too much downtime and relearn it all. But right now, I’m pleased with how it’s looking and functioning . . . Except for that site title that seems to have acquired a gremlin.
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!
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.
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.
1. #braininjury sucks the life out of your energy. Brain biofeedback gave me some bk; I use devices & strategies to prop rest up. @PubLaunch
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).
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!!!
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.”
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 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.
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.
Because of my Twitter activities and launching#ABIchat last year, the Communications and Program Assistant at OBIA, the Ontario Brain Injury Association, contacted me about writing an article on social media for their magazine OBIA Review. It’s rather nice to be invited out of the blue to write something, and so I did. Back in January. Just in time for their deadline. And then I promptly forgot all about it.
Forgetting isn’t always a good thing. But in this case . . .
Imagine my delighted surprise when the March 2014 issue (PDF) on social media came in my mail, and I opened it up. Actually, I opened it up after someone tweeted out their kudos, and I had to go look what they were talking about. Oh dear, brain injury strikes again. But wow — so cool to see my byline!
And so ends my book tour of Time and Space. Between my exhaustion trying to keep up with daily life, leaving no room for flogging the life out of my tour, and the gods, the sales dived deep under my expectations. I think I need a new cover. But I’m feeling right out of ideas. Or maybe I could use the same concept but different colours or something. Well, I’ll keep that stuffed down deep in my mind where the creative neurons can chew on it while I take the next nine days off. It’s staycation and digital detox time! For those who’ve yet to come across that nugget of a term, a digital detox is when you go offline and off computer and re-enter the analogue world of papers and pens. I’ll be reading or photographing what passes my fancy.
Except for hosting #ABIchat on Monday, September 2, I’ll be back Monday, September 9. Have a great Labour Day holiday everyone! And enjoy your first week back at work or school. I’ll be thinking of you as I lounge around!