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Changing Perspective in Quest to Restore Cognition

Failure tells a more accurate picture of brain injury rehabilitation.

Shireen Jeejeebhoy
Source: Shireen Jeejeebhoy

I roll my chair up to my semi-tidy desk, push a notepad out of the way, open the non-fiction book I'm reading, and shift the blank white paper to cover off one page with its beautifully laid-out text. I put on my reading glasses. I reach for my iPhone to set the timer so that I can track my reading speed progress over time and not over-push myself. I set it for five minutes. And I read. Ever since I finished rehabilitating my reading comprehension at Lindamood-Bell, a solution that worked to restore my book reading, I've tried various ways of deciding how much language to image as I read. For the longest time I used the way Lindamood-Bell taught me, using the number of pages as my guide while also setting a thirty-minute time limit to guard against fatigue. But after a recent health setback that lead to my failing at reading, I now use only time as my guide. I image while reading for five minutes. Stop and verbalize what I've imaged. Repeat two more times. I try to keep the total time to the advised thirty minutes or less. The failure in my reading wasn't in the solution; the failure was from my fatigue, lack of support, and the method's parameters I'd set to ensure fatigue didn't kibosh my practice. But for over eighteen years after my brain injury and before my clinic's director referred me to Lindamood-Bell, the failure was inherent in the solution yet attributed to me in not accepting my injured reading skill.

In September 2010, I detailed in an exhaustively long post all the treatments, strategies, food, and preparation I needed to read -- with the requisite two-hour nap after twenty minutes of applying eyes and brain to text. I wrote about brain biofeedback improving my concentration:

"The biofeedback also started a chain of spontaneous healing that’s lasted to this day and that has occurred in every area that’s been injured. However, if I try to read twice in one day anything that is at a higher grade level than an Agatha Christie, that is new, that I must learn and retain, I literally zonk out for up to 2 hours on the couch. It’s as if my brain has gone into overload. Also, if I’m going to respond to written material (like an e-mail or article I want to blog on) or if I must follow something to learn about, I have to reread it a few times. Rereading is easier with each pass. But there are days when I’d just like to read already!"

I wrote about audiovisual entrainment (AVE) inducing relaxed, focused attention so that if I read right afterwards it helped me. But I warned,

". . . you have to be careful if you have a brain injury because it can push too much, and you’ll crash. I find it best to decide beforehand what my day’s schedule of activities will be, decide on which AVE session is best, and then no matter how good it makes me feel, stick to my schedule and don’t do one thing more."

I wrote about using methods like cranial electrostimulation to improve blood flow to the brain to increase energy for reading.

I wrote about stimulating the brain before reading with caffeine or chocolate and feeding the brain after reading with sweets since the brain's fuel is glucose and reading seriously depletes brain energy. I still find eating a small amount of sweet, like half an ice cream sandwich or a small pastry, revives me significantly after working my brain hard.

I wrote about water and exercise and pain control to enhance brain function.

And then I detailed the compensating strategies for reading, what some in the medical community call cognitive therapy, plus ones that I discovered on my own:

"In addition to what you learn in rehab — highlight, take notes, write notes in the margins, cover off text, pace yourself, read for a short period of time, reread — there are additional ways to compensate and to make reading slightly easier . . . The easier it is to perceive the written word, the less energy your brain requires to see and understand the words on a page, the more that’s available for processing, retaining, learning, and synthesizing. Paper is easy on the eyes, but has several drawbacks with regards to comprehension. With the advent of eReaders, we now have a choice of format."

I wrote about the benefits of daily practice. With the help of others in 2016 and 2017, I was finally able to achieve that level of practice, and my fatigue lessened to the point that I no longer needed to nap after reading.

And I concluded my exhaustive review with

"When trying to decide on a book or more difficult reading material, ask yourself these questions in order to decide what to read and when: is it new (harder than material you’ve already read); how much energy do you have (if low, don’t read); is it relevant; is it long or short; is it complex; can you just read it or must you retain and learn from it; what format is it in; is it interesting. Always set a timer, ensure a quiet environment, use the appropriate AVE session beforehand, use the compensating strategies that work for you, have a glass of water at hand, and do not repeat a reading session that day. You want to set yourself up for success so that you are likely to keep reading."

But that was me in 2010, thinking that if I just plugged away hard enough and followed the standard medical advice of using strategies well, I could read and would get better at it. I would succeed. Failure was a normal stepping stone to success. Failing over and over and over was part of brain injury rehabilitation. I was okay with reading where I was at while working diligently to improve it to my pre-injury skill level because I believed the latter was possible using these strategies. I'd adopted this perspective promulgated by therapists and psychiatrists entrenched in standard health care of brain injury. I fuelled my hope for success and shored myself up against failure by finding and using additional therapies and technologies that enhanced my brain function during reading. Eventually, I would succeed, I told myself and the world.

I did not succeed.

Nothing fundamentally changed, except my fatigue level afterward. Even when I began reading out loud with others, my reading skill didn't budge. I couldn't comprehend; I couldn't build up the big picture; I couldn't remember.

Failure wasn't a stepping stone on the way to success like it is when learning a new skill or taking on a new challenge. Failure was because the solution wasn't a solution.

For eighteen years, to sit down to read was to schedule and strategize, not to work on regaining comprehension and automaticity. Like writing and walking were for many years, reading was a conscious act from start to finish. Anything that must be done with the conscious mind always consumes more energy than an automatized skill.

Although some who remain in the standard medical model understand automaticity is necessary for success, the methods they use aren't geared to regaining automaticity. When a child, you learn automaticity of a skill through daily instruction at school and practice at home. But those who may have conditions like Attention Deficit Disorder or Dyslexia, need more than class time and practice at home to gain automaticity. They need specialized treatment and extra instruction to master the skill and gain automaticity. And those who don't have the opportunity to practice at home may be slower to gain automaticity. Also, classroom instruction is hours per day with recesses and lunch to give hard-working brains a break.

Those of us with brain injury aren't like typical students who don't need extra instruction. Yet we don't by and large receive hours per day instruction nor receive specialized instruction nor are given supports to practice at home. We don't have the energy children or even older adults have to withstand the needed intense work without substantial support in the home. Yet homecare and working with family and friends to ensure a person receives that substantial support is not considered part of outpatient neurorehab. How then are we expected to succeed?

I regained automaticity in writing and walking because of active treatment of broken neurons and, as well, in the former, relearning how to write and in the latter relearning how to see. But success was and is delayed because I had to find treatment on my own and didn't receive the homecare I needed in order to have the energy for intensive instruction and daily practice. Reading, as I've come to learn, is a complex cognition requiring other cognitions to work first, for example, attention and working memory, and made up of a few different skills that include decoding symbols, visualizing concrete details, visualizing concepts, verbalizing to oneself symbols and imagery. Standard medical care doesn't include any of that in their solution.

In late Spring 2018, I was introduced to Lindamood-Bell's reading comprehension program. I spent the summer intensively learning how to create imagery so that I could visualize, comprehend, and speak about the story I was reading. Unlike the standard, limited view of reading, they knew that reading is more than decoding words; it's about comprehending language.

In the last two weeks of the program, we worked on applying my newly acquired skill to my own reading materials, the novel The Lions of Al-Rassan and the philosophy textbook Philosophy of Mind. This time when I failed, it wasn't because the solution wasn't a solution, it was because of how we all fail when acquiring a new skill -- not knowing how to visualize an abstract concept and needing instruction on that, forgetting an image and needing to reconstruct it or improve on it, struggling to condense pages into one short main idea and needing to be reminded of the key to condensing, being unable to answer an higher-order thinking question without prompting from the instructor. Yes, fatigue and not-yet-healed neurons compounded these failures, but the solution is a solution; the solution is not inherently a failure like with the standard medical approach to brain injury.

I am now required to practice daily on my own. Since Lindamood-Bell is outside the medical system for brain injury and since I don't receive community care to help with household duties and organizing myself anymore or plowing through the work when fatigue pulls at me -- medicare defunded it for people with brain injury -- my neurodoc has stepped up to actively ensure I read regularly and monitor how I'm doing with my practice. Still, I'm aware that the slowness of my progress in regaining full automaticity and being able to read to my former ability is because of the lack of social support, lack of homecare and community care, lack of being able to afford advanced network-level treatment of my injured neurons, lack of being able to afford top-up instruction at Lindamood-Bell, and lack of additional support when I suffer inevitable setbacks in my health that affect my cognitions and functionality.

Failure after brain injury isn't due to someone not being diligent or accepting enough. It's due to standard medical solutions not being solutions, psychiatrists and neurologists dismissing research-backed solutions that are, the lack of funding for required homecare and in-home health care during the arduous process of healing the brain, and the lack of social support and understanding of both brain injury and treatments that work.

Copyright ©2019 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.

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