The BIST Community Fair and Expressive Art Show was in a new venue. Off of Yonge near Brain Injury Society of Toronto’s offices. People found it easier than last year so the place was buzzing as they checked out all the resources like Sunnybrook Family Navigation, 211, Cota, Free Geeks, and of course BIST. Quite a few of us BIST members had our artwork displayed, and I had a table where I sold and autographed copies of my Concussion Is Brain Injury books. It was a blast!
But I was sadly reminded how much the medical system fails people with brain injury.
I could tell when the person approaching me had had a brain injury. Look into their eyes and you’ll see it.
I sometimes feel — or more accurately, have been made to feel by some physician ABI experts and kith and kin — that it’s just me who struggles. Others do fine. My neurodoc insists how well his other patients do socially after following his advice. I find it difficult to believe, assuming they had social skills before their brain injury, because treating those parts of the neural networks involved in social interaction actually makes it easier cognitively and emotionally. You can have learnt all the skills in the world but you can’t use them well or at all when the involved networks are off and unhealed. It’s rather frustrating to know what to do but unable to do it.
Meeting fellow persons with brain injury reminded me: I am not alone. I hope I conveyed to them that they’re not crazy, either.
One said her doctors opined that they didn’t have a brain injury, only brain surgeries. Well, when you see them clutching every flyer in an effort to find answers, and they talk about short-term memory loss, then they have a brain injury. Just because a scalpel created the injury doesn’t make it a non-injury.
Another told me that they had concussion only in some situations. Huh? Apparently, their health care people didn’t believe they had a brain injury — for some reason the docs couldn’t see it — yet they are filled with fear — the kind of fear we get when the world comes at you like a barrelling train, friends aren’t willing to slow down and accommodate, and you keep missing chunks of conversation or what’s happening around you. Their health care professionals must be stupid. Or willfully blind. Lazy definitely. If you don’t acknowledge such obvious difficulties and blame the person — like saying I have low EQ as one did me while not acknowledging people refusing to accommodate my fatigue and slow processing etc created a situation that lead to everyone being upset. Refusing to see the obvious cognitive struggle in a person’s eyes means the health care professional doesn’t have to up their game, learn about the brain and brain injury, and treat it properly.
Another visitor to my table was stuck inside their head, unable to cope with the sensory informational overload. They had family around them, a mother, a sister, willing to take them around to every table and every artist, willing to learn about what’s available to make their life and brain better. This is rare. A family being there in person, helping on a practical level and supporting emotionally by ensuring their injured loved one wasn’t hunting for answers alone. The others all were alone, even when it was obvious they shouldn’t be, that they wouldn’t remember anything from the fair or be able to learn from all the flyers. The flyers, the brochures, my bookmarks would become a cacophony of paper lying unfound where they would be dumped in the relief of being back home, too fatigued to put the papers in a visible place.
The other amazing thing about this small family: they wanted two copies of my book — one for the injured member, one for the sister to read. Respect! Unfortunately, I had only one left by then. All people with brain injury should have family like that.
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.
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!
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!
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.
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).
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.
I want to publicly thank the many people who have encouraged and supported me in my efforts to update Concussion Is Brain Injury. Your kind words have lifted me up and kept me going. However, I’ve hit a bit of a roadblock and need your help to climb over it.
Today’s publishing world is moving towards readers essentially pre-ordering books by joining in crowdfunding. Publishers want to see tangible interest in the books they think are worth publishing before they proceed. My publisher, Iguana Books, and I believe Concussion Is Brain Injury is worth seeing the light of day, but it won’t unless my crowdfunding efforts succeed in the next two weeks. So far, we’re not even at 10 percent of the goal. Eek!
Concussion Is Brain Injury needs a rewrite to include a wealth of new brain injury research from the past three years, along with my own remarkable improvements and the methods I’ve used to achieve them. Crowdfunding will fund the editing, cover design, and the all-important marketing of my book.
“this is an amazing book that really sheds the light on how little is known about concussion,and brain injuries my good friend Shireen Jeejeebhoy now wants to publish a second edition but can only do this by raising money through crowdfunding . Shireen Jeejeebhoy has new ground breaking new material that challenges the status Quo about brain injuries and needs to be read and heard” – Nancy Howson as shared on Facebook.
Seeing readers who’ve put their money where their interest is will spur me on to write faster, which as you know can be a challenge with brain injury. But I’m up for it, to get Concussion Is Brain Injury out and into readers’ hands by the Fall. Are you?
If you have any questions about the book or PubLaunch, please don’t hesitate to email me through the yellow button on my PubLaunch web page or leave a comment on this post. Thank you for reading this and considering participating in my quest!!
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.
I’m jumping up and down yet figuratively biting my nails. Today, I’m taking a step I didn’t think I ever would. Today, I’m trying crowdfunding! Oh boy. It’s a big risk because you’re asking people to put their cash towards launching your books out of your computer and into print, to take what only you and a few others have seen and turn it into paperbacks and ebooks that anyone around the world can read. I’ve always admired people who crowdfund. Their inspiration, my editor at Iguana Books, and my own circumstances have combined to at last get me to take this step for Concussion Is Brain Injury.
I want to make it better for readers. I want to enrich and enhance it with ground-breaking new sections that challenge the status quo, sections on the raw reality of relationships, the truth about our emotions, my thoughts on CTE (Chronic Traumatic Encephalopathy), faith after injury, rehabilitating reading in the knowledge economy, and a promising new treatment that I kickstarted.
To that end, I need your help to fund the services I need to bring this book to readers. The funds raised through PubLaunch – a crowdfunding site designed specifically for authors and readers – will go towards professional editing, a new exciting cover design, better packaging, and a robust marketing campaign. In return for your generous support, I have set up some great rewards for you, including prints of my original photography, special edition hardcover copies, and copies of my previous books.
A little bit of a hiccup in the Twitter timeline. But it’s early days, and so I was able to redo @BobbyFlax’s tweets. Here then is the Twitter portion of Chapter 3 of my #nanowrimo novel in progress, Chantie: