Ever since my CCAC therapist left, the one provided by community care under medicare, at about the same time my parents left the city, I haven’t succeeded at Camp NaNoWriMo. It was difficult as it was. I worked hard to ramp up to doing both Camps in April and July, in addition to NaNoWriMo in November, and could only ramp up because of health care and parental support. In fact, my therapist believed so much in my ability to write three books a year, that her belief in me rose me up over fatigue, my brain-injury related reading and organizational problems, and other issues that made writing every day quite exhausting. When you believe in a person and act out that belief, you empower them. No one else has come close to what she did for me because she initiated action based on her belief.
When therapist and parents left, my brain-injury issues plus PTSD suddenly exploding blocked me from starting or, if I managed to start, finishing Camp NaNoWriMo.
That may sound like a cop out, but cognitive work, being productive, initiating, deciding things, being organized, are complex brain functions. We don’t think about them as adults because the brain learns and makes automatic these functions as we grow up over 21 years or so. Going back to year one after concussion is a bit disheartening and needs all-in support and treatments to get back to adult automaticity. Trauma, bad memories, flash up a big stop sign to it all, as well.
I’m rambling.
I think I’m going to try Camp NaNoWriMo again. Ever since I fired him then had a talk with and rehired him, my neurodoc has become actively supportive, helping me with my reading practice. He’s also the only one to occasionally prod me to write an article for Psychology Today. This past November, for the first time, he took my NaNoWriMo writing month seriously. Previously he thought it was just some trivial thing that if I didn’t succeed in writing during it, I could write another time, and I was just being rigid minded if I got upset about being unable to write during NaNoWriMo because of exhaustion and/or PTSD. He’s now understood it’s a critical filling in of cognitions my brain injury took from me. The only substitute for NaNoWriMo are humans who sit with me several times a week, like during the ten weeks medicare granted me help to write Concussion Is Brain Injury: Treating the Neurons and Me.
My neurodoc said he could help me with sticking to Camp. I have no great expectations. I’m setting the bar low and a goal for something I really need to do: update the pages tied to the Learnings chapters of my concussion book. I’ve learnt a few new things since I published it, especially in reading, as regular readers would know!
I’ve left signing up almost to the last minute. I haven’t yet identified all the web pages I need to update or figured out a schedule. This kind of prep is what my CCAC therapist would get me to do. Don’t just think about it – write it down in my calendar, outline it on my iPad, set up files on my computer. And sign up!
The Brain Injury Society of Toronto holds an annual Expressive Art Show every Spring. This year it’s at Artscape Youngplace at 180 Shaw St. And I’m pleased to announce that I’ll be there with my book Concussion Is Brain Injury: Treating the Neurons and Me!
“the intricate details of the author’s experience are riveting and enlightening.” Kirkus Reviews
“Jeejeebhoy’s tale is highly emotional…uplifting, while giving a realistic view of recovery.” Self-Publishing Review
The BIST Expressive Art Show launches on Tuesday, May 21, 4:00 to 7:00 pm with paintings, illustrations, crafts, sculptures, and copies of my book available for sale at a deep discount ($20) and for personal autographing. I’ll also be doing a brief reading at 5:00 pm.
This year, I will also have one of my artworks — a photographic collage — on display. I’ve always been impressed with the evocativeness and beauty of many of the art pieces. I hope you will check out the show and the many artists there! And please come say Hi!!
It’s over! Hard to believe that it was only four months ago, I was starting to learn how to visualize and verbalize and on my way to regaining my reading comprehension. And now it’s over. I plunged in with Lindamood-Bell on the basis of their decades of experience, their thorough reading assessment, my brain Clinic Director’s endorsement. Even though they were fully confident they could give me back my reading, I was uncertain. After eighteen years of not much progress, how could I achieve reading books again in only two months?
Well, I did it. I ended the original 81 hours back in September and had five refresher sessions one week then two weeks apart. I’m still reading The Lions of Al-Rassan (on page 183 as of today, more than a third of the way through it), and I’m rereading the course material from the Philosophy of Mind course I took six years ago and did well in on the strength of my writing, my short-term memory, my intensive use of the iPad for notes and repeated calling up of word definitions (no vocabulary retention), audiovisual entrainment, and serious napping. Even so, I never acquired vocabulary. I never understood some concepts like Descartes’ extension. And I didn’t retain much of it. But now I’m reading it with comprehension. I’m acquiring vocabulary. The only thing I need to is read and work the visualizing and verbalizing process.
It was sad to say good-bye, but today, I was ready. I’ll still be checking in as checking in helps the student to retain and prevent drifting away from the process. I have to say that because I’ve been intensively writing a novel for NaNoWriMo, I have been drifting away. And some stressful events have seriously interfered with my memory of what I’d read. Having the last of the extra five free refresher sessions today gave them an opportunity to pull me back in and for me to ask for tips.
Read every day. And even if it’s only five minutes during this intensive writing period, read daily to keep the connection to creating imagery. Work the whole process if can read for 10 minutes.
Read daily.
Funny, before my brain injury, no one ever had to convince me to read daily. Not reading a book was a chore. After my brain injury, reading a book became a slog of quicksand-sucking proportion. Now reading daily is difficult yet returning me to the joy of books.
Seven days in, and I’ve written every day of NaNoWriMo. I haven’t been able to do this in years. Most amazing part: write, edit, fine tune, and post one chapter to Wattpad every day. Up to now, at best, I wrote one chapter daily during November. Never edited before. Too scared to even post it for public reading.
It’s rather exhilarating.
And exhausting.
My body feels run over. My voice is dropping in volume. My brain wants a time out — until I begin thinking about Louise, about having fun with this story, about how suddenly riding the TTC is fodder. The worse the slog, the better the fodder. Too bad this counterforce to TTC draining, straining, enraging will last only a month. Maybe if lots of people read it and share it, it’ll continue doing good for all those who have no choice but endure whenever they step onto the red-and-white inaccessible transit. Check it out 👇
Diversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.
During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.
All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.
Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.
Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.
And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.
So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?
No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?
Diversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.
During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.
All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.
Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.
Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.
And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.
So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?
No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?
I wrote last time about my reading evaluation. This post is on my results. When you have a brain injury and rehab tells you that you can’t read anymore, you assume that they’ve done a thorough assessment and analysis of your reading cognition.
You’d assume wrong.
Reaction
In 2005, five years after I was told I wasn’t reading the ubiquitous mass paperback in my hand, I had a qEEG done, which told me the neurophysiological basis for why I had so much difficulty reading. The first week of June 2018, I underwent three hours of testing over two days that assessed my auditory, visual, and language foundations of reading; my fluency; my comprehension; and my concept imagery.
Huh? Yeah, I’m still learning these too. They match with my experience, but they introduce concepts that I haven’t heard of before or only knew about from a different perspective. I learnt more about where my reading difficulties lie.
My very first thought was: why did I not have these tests done during rehab in 2000? Why did the medical system not assess all my cognitions with full, appropriate qEEGs and these kinds of reading, writing, and math tests?
If I had been properly assessed, not just given a neuropsychological test people with high intelligence can ace, injury or no injury, I would have had a complete picture and been given a precise scientific and medical explanation of why I couldn’t read anymore, not just a general statement of you can’t read.
I also don’t even know how to process the fact that when I asked my neuropsychiatrist for help with reading that the reading expert he consulted pointed to the aphasia website and didn’t tell him that I should have all these tests done, the ones I’ve just undergone. It’s been bad enough I had to wait twelve years for a reading “expert” advice, but to have not known about these tests for a further six years because the medical and “reading research” community are so intellectually lazy is beyond egregious. I’m pissed. And upset. And filled with hope that finally I’ll get my book time back.
I’m still processing my results.
Results
It’s difficult to explain what one is only just starting to grasp. Lindamood-Bell who conducted the evaluation, normed all results to my age and gender.
My reading rate is too slow. I’m in the 16th percentile. That means 84 percent of women my age read faster than me. I believe this rate is about double what it was in 2001. Wow! Some progress!! sarcasm
My foundations are solid. These are the ability to hear phonemes, the sound parts that make up words. The ability to recognize and pronounce high-frequency words. The ability to figure out an unknown word within the context of known words.
I rely on my vast knowledge bank and familiarity with language to prop up my comprehension. When I cannot see a word but only hear it and I have to pick out an illustration that best represents the word, I cannot rely on my ability to decode a word from its roots to figure out what it means. And so I don’t do so well. Based on results from standard vocabulary tests, I drop about ten percentile points, maybe a bit more, when given the same vocabulary test when heard, not seen, and using pictures instead of words to “define” the word spoken to me.
My accuracy in reading words is very high.
Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
When I can rely on my knowledge bank and ability to decode words, my comprehension is good. When I read new or lengthy material even text at grade six level, where I can’t rely on my knowledge of content and language, my comprehension drops a lot.
Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.
As I understand how Lindamood-Bell conceives of reading, reading comprises decoding and comprehension. Decoding is done in the reading foundations aspect of reading. There are three parts to reading foundation: auditory, visual, and language.
“. . . thinking that reading is decoding a word but reading is being able to comprehend.” Nanci Bell
Auditory
The ability to hear phonemes, the sound parts that make up words.
Visual
The ability to recognize and pronounce high-frequency words. The ability to spell high-frequency words, that is, words that are used often in everyday reading. And the ability to image symbols, that is, letters or letter combinations.
Language
Vocabulary. And the ability to figure out an unknown word within the context of known words.
Encompassing these three foundations of reading is comprehension.
“If there’s weak comprehension, … frequently teachers and parents don’t really know perhaps there’s weak comprehension. . . . If it’s really severe could be labelled hyperlexia there’s a gap between ability to read words and ability to comprehend. Or if it’s weak enough, it can fall into the label of autism.” Nanci Bell
Comprehension
Lindamood-Bell uses Dual Coding Theory to explain how what we decode while reading — either text or listening to the words — is turned into comprehension by our brains. In dual coding theory, the symbols — words on text or words heard by the ears — the auditory, visual, and language parts of reading — are turned into non-verbal concepts that we can picture. A painting represents a thousand words and all. (Wikipedia notes it was a Canadian who posited this theory. Why is it then Americans, not the Canadian rehab centre I went to, that knows about and uses this theory to rehab reading?!!!!)
As part of that theory, they posit that concept imagery is how we understand what we’re reading. When we read or listen, we create a picture in our mind of what we’re seeing or hearing.
Nanci Bell, co-founder of Lindamood-Bell, explains the comprehension and concept imagery side of reading in this video below. Note that what we often think of as reading issues, eg, dyslexia, occurs on the decoding side of the ledger. The comprehension side isn’t usually talked about. It usually doesn’t even have labels like the decoding side does. I personally don’t think labels are always useful, but in our current milieu where everything is labelled, a label gives credibility. I think that’s why when people with brain injury say they have trouble reading yet can read words and use some or a lot of their vocabulary, health care providers, family, and friends don’t believe us. But as Bell says, vocabulary is not comprehension.
Now comes the tough part.
Restoring Book Reading
Lindamood-Bell said: “we can restore your book reading.”
Pause.
“What’s so tough about that, Shireen?” you might ask.
This is like where I describe in my book how I met clinicians in 2005 who knew what I wanted — to heal my brain — and said they would help me do that and could. It’s so hard to describe in a blog post what it’s like to be neglected medically, your angst and desires dismissed, and told to accept diminished functionality for years and years and then be told you can be helped significantly — and then you find out the help was available at the time of your injury; it’s just that the people entrusted with your care didn’t know about it or “believe” in it and your loved ones never searched for you.
Once again, I’m being told the unbelievable, that what I’ve wanted for years is in fact doable. It feels untrue. I asked:
“When you say I’ll be able to read a book like I used to (before my brain injury), do you mean a book at the level of an Agatha Christie? A PD James? Neuroscience article? And/or philosophy of mind textbook?”
They answered:
“In creating your recommendations for instruction, the goal I had in mind was your ability to read and process literature at the level of your potential, and at the level that would support research and continued learning for your writing. Especially with the full recommendation of 120 hours, I picture your ability to access all of the examples you provided in your original question. Our instruction may start at a lower level, but over the daily and weekly sessions, you’ll see an increase in the amount of language (text) you are processing as well as the complexity.”
Basically it would look like an ascending ladder of difficulty.
They continued: “Since our vision for instruction will include increasing the volume of information you are processing, our goal is to decrease your fatigue, by systematically and consistently reinforcing independence with visualization for increasing lengths of language. Just like any foundational skill (ex: learning a new language, learning a new instrument) practice and continuous exercising of the skill, makes it more automatic. Instruction will stimulate and strengthen this process for you, but practice outside of sessions and beyond instruction, will also be key. You may still need to take breaks, but I anticipate the length of breaks and the frequency of breaks will diminish as you, on a daily basis, start reteaching your brain this visualization process.”
I’ve consulted with some of my health care team. They believe I will benefit, that I need this hope. There is some skepticism that reading books like I used to is achievable; but no matter what, given all the brain work I’ve done, how my brain is now used to training, and how I do the work given me, I will benefit. My reading will improve. Dr. Lynda Thompson at the ADD Centre, who referred me for evaluation, was impressed with the time they gave me answering my questions and liked that they would show the objective learning curve not rely on subjective feelings and measure the gains.
I’m not sure how I’d be able to handle it if I didn’t achieve reading like I used to, though. That’s why I’ll need all the support I can get from my neurodoc. We’re patching things up; I’ve enforced pursuing my goals, and only my goals.
The normal intensity of instruction is four hours per day, Monday to Friday, for four to six weeks. Because of my fatigue, we’ll cut that down to two hours per day, five days a week, for eight to twelve weeks. It seems that I would need the whole three months and would have to practice daily on top of instruction as well as continue daily practice after instruction ends. Whew. That’s a heck of a commitment to work! I worried that the whole thing would be a moot point if I didn’t find a way to pay for it. I need help since the cost is way, way beyond my means. So I’m borrowing. What else is new.
OHIP really should be paying for this. This is what cognitive therapy ought to encompass when acquired brain injury clinics talk about what they do as cognitive therapy. It should also include brain biofeedback and audiovisual entrainment and long-term talk therapy. But first we need to get the medical system to assess cognitive functioning and brain injury properly. And to get anyone working with people with brain injury to take their reading problems seriously. We live in a knowledge economy after all — if we can’t read volumes of information, we can’t work.
Concept imagery underlies comprehension. Comprehension not based on having an adequate vocabulary nor ability to hear phonemes. Nanci Bell: “What they struggle with is the concept or the whole. And if you don’t have the whole, you can’t do higher order thinking skills such as main idea.” They call it in the U.K. aphantasia, the inability to visualize. Higher order thinking: From what you pictured— not what you think — what comes next in this story?
Lindamood-Bell trains to the client’s potential not what falls into the average range. This is significant. Brain injury rehab is about working to the average of what they’ve done since the 20th century, not for what is needed for independence, satisfying functionality, and most importantly, the person’s potential.
—–
Sketches courtesy of Dana Kernik-Theisen, Center Director, Lindamood-Bell Learning Processes, Edina, Minnesota, who generously gave of her time to explain my results, recommendations, and reading theories.
June is brain injury awareness month in Canada. Other nations use other months to raise awareness about brain injury. But what does raising awareness mean? Do we simply want people to hear about it over their morning coffee, then go on about their lives, oblivious to the suffering all around them? Or do we want to change the lives of people with brain injury for the better so that they can actually heal from their injuries, live within society, regain their dreams and families?
Back in 1980,a young man who had survived osteogenic sarcoma declared he would run across Canada to raise awareness for cancer. Back then cancer was seen as fatal, a shameful disease that people didn’t talk about much or they whispered sympathies behind closed doors for anyone caught with having grown a tumour. Children with cancer would, of course, die tragically, as everyone knew. A cure was not possible. Talking about the disease and advances in treatment was restricted to those with it or within medical circles. And then Terry Fox dipped his artificial right leg in the cold Atlantic waters off of Newfoundland, Canada and set off in his quintessential one-good-leg, one-prosthetic-leg hop to run a marathon-a-day across the second-largest country in the world.
Not many noticed his leg dip. But as he ran day after day on the highways of Canada, people began to pay attention. There was no social media, so it was word of mouth and local papers (which still existed back then) that spread the news of Fox’s Marathon of Hope.
Hope . . .
And the one-legged hop of a young man braving to put a public face on a dread disease.
Those are what caught the media’s attention so that by the time he hit Toronto, Canada’s largest city, so many people knew about his mission that crowds swallowed him up and overflowed his fundraising coffers. They cheered him on as he exited the city and turned north.
People had seen that bone cancer had taken his leg. They had assumed he was alright and was awfully brave for running a marathon a day. But when cancer came back and crawled into his lungs, it exploded the myth that people were fine if they continued to live after a cancer diagnosis.
Canada was invested in the life of this man; heartbroken when cancer stole his dream from him; mourned when he died. Canada’s collective emotion drove people to talk about cancer out loud; to donate and fundraise for a cure throughTerry Fox runs. Funds pouring in fired up researchers and clinicians to search harder for a cure and to treat people kinder and more empathetically; tangible awareness inspired others to provide support and services to boost morale during dreadful cancer treatments. When someone received a cancer diagnosis, friends, family, neighbours now knew what that meant and rallied around to provide lifts to appointments, hot meals, coffee time. Other countries heard about Fox, and Terry Fox runs sprouted up all over the world. Some cancers are now curable. Children no longer automatically die.
No one with cancer is ostracized anymore.
None of this is true for people with brain injury. They remain in the shadows; mainstream researchers and clinicians talk about strategies and acceptance, not curable treatments; those who understand neuroplasticity and have developed effective treatments remain unknown or dismissed as shams; family and friends are given permission to abandon their injured loved one. And no one is expected to rally around for the years it currently takes to recover and the decades of living within its constricting walls.
Shame and disgust sideline people with brain injury into day programs — keep them busy so that they won’t notice society wants nothing to do with them. Shame and disgust lead so-called experts to judge injury-driven behaviours instead of treating the neurons so that the person can be themself again. Shame and disgust lead most to avoid reading up about it, to avoid the injured person, and to deny the need to accommodate.
We talk good game about concussion in athletes and troops, but we don’t change our attitude to fund treatments, to talk out loud about how the brain affects every single part of you and so every single part of you from your thoughts to your heart can be injured and so need treatment. Talk is solely about the mysterious CTE or PCS — aka untreated brain injury — and donating concussed brains to science.
We need a Terry Fox-type ignition for brain injury.
Brain injury awareness months just aren’t cutting it. What tour de force will ignite a nation, spread awareness of brain injury around the globe to finally change lives for the better?
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!
The BIST Expressive Art Show launches on Tuesday, May 21, 4:00 to 7:00 pm with paintings, illustrations, crafts, sculptures, and copies of my book available for sale at a deep discount ($20) and for personal autographing. I’ll also be doing a brief reading at 5:00 pm.
June is brain injury awareness month in Canada. Other nations use other months to raise awareness about brain injury. But what does raising awareness mean? Do we simply want people to hear about it over their morning coffee, then go on about their lives, oblivious to the suffering all around them? Or do we want to change the lives of people with brain injury for the better so that they can actually heal from their injuries, live within society, regain their dreams and families?