When I first met a person who’d lived with brain injury for twenty years, it seemed so far into the future for me. I could barely comprehend living with brain injury that long. I expected to be fully recovered by that point, myself. Roll eyes here. I was working hard on improving my health, pursuing treatments I could afford, and with the help of a therapist from Community Care Access Centre (CCAC), increasing my functionality more and more.
Eighteen years, eleven months, and three weeks after my injury, I’ve lost the CCAC help due to government cutting back on health care for brain injury to pay for administrators. I’ve suddenly regained reading comprehension and am practicing most days to keep progressing back to my old reading ability (one of my health care providers doesn’t think that’s possible). I’ve lost all the gains I made in my functionality — I’m still hanging on by sheer willpower to writing a novel every November. And I’m trying hard to keep up Psychology Today blogging even while I can’t remain consistent in writing here or on my political blog. I’m facing the horribly unbelievable fact that I won’t have fully recovered by twenty years. The grief is real.
Yesterday, at the start of week . . . uh, what week are we on . . . oh right, five, I read a four-paragraph story during my reading comprehension retraining with Lindamood-Bell Australia, but we didn’t finish the full Visualizing and Verbalizing process. Today we did.
After the clinician read a grade level seven Whole Paragraph, I began reading a four-paragraph story in hour one. I got to the end of the third paragraph when it was break time. I inhaled some sugary treat, and the clinician decided we would finish the four-paragraph story. Fine with me!
The sugar moved my by-then sluggish neurons to read the fourth paragraph then finish the whole process of first visualizing the story in blocks and then verbalizing the entirety of it, including giving the main idea and answering questions about the story.
All told, the four-paragraph story took me about one and one-quarter hours to get through.
Since we still had time left in hour two after completing the four-paragraph story, the clinician read a Whole Paragraph story, and I have a word summary of it. Then time was up, and I was outta there . . . well, logging out as quickly as I could move and click my mouse.
We began the first hour with me having to recall the four-paragraph story we read yesterday. I did okay, if you count remembering from the middle on then remembering bits and pieces of the first two paragraphs and recalling them out loud out of sequence, okay. I got the details right because I could see the pictures in my head. Visualizing really does facilitate recall! But since this is the first time my recall was out of sequence, clearly we’re starting to challenge my most injured neuronal networks and areas.
Like yesterday, I have a bit of a concentration headache, and my entire head feels wrapped in cotton wool. I’m dying for bedtime, but sleep isn’t guaranteed as sleepy and tired as I am. I have the feeling that this intensive cognitive work somehow revs up my brain so that it’s tired yet cannot sleep until enough time has passed for the neurons to return to their usual working level.
Working the neurons, changing pathways in the brain, fills every cell in my body with white noise. Fatigue while learning how to comprehend written text is spreading into the rest of my life.
“Where do you want to meet next time?”
“Uh . . .”
“What part of the city do you want to do next?”
“Uhhhh . . .”
“Why don’t we touch base closer to the time and discuss it then?”
“OK,” I agree, dying for a nap. Or coffee.
Normally, I know what streets, buildings, areas I need to do next in my work with my CNIB orientation mobility trainer. But with the Lindamood-Bell Visualizing and Verbalizing program sucking every oxygen and glucose molecule out of every brain cell, every muscle cell, I got nothing left to answer simple questions.
As always, I find it remarkable how much a sweet something — not tooth-sucking sickly sweet but flavourful with sugar — can revive me.
Why am I surprised?
The brain runs on glucose, one of the constituents of sugar. Glucose refuels the brain’s energy packs.
I’m almost halfway through restoring my reading by developing my ability to create imagery while reading.
Early this week, the sound of the plane rattling in the story I was reading popped into my mental imagery. When I told the Director of the Lindamood-Bell Australia Centre, he was very excited. Very. This was a sign of automaticity, he explained. Not only did it pop into my head without any conscious thought on my part, it was also a second sense to add to the visual sense that we began with.
They’re changing up the program again. At least this time, it’s a balance of easing off with keeping the accelerator on.
Each hour begins with me straining to recall what stories I read the day before (or occasionally at the start of the second hour, the hour before) and then giving a word summary based on my recalled pictures of that story. I can usually recall one story, but a second story for the second hour takes effort. Yesterday, total blank. But once my clinician prompted me with the words “alligator turtle,” the pictures of that story began to flow back into my consciousness and I was able to recall most of the details. Sweet!
After that, either I or they read a Whole Paragraph followed by one or two Paragraph by Paragraph, either two or three paragraphs long.
The change up is that the grade level of Whole Paragraph has been dropped back down from grade level 9/10 to level 5 to be on par or one level above Paragraph by Paragraph.
The idea is that through Whole Paragraph, I will learn how to create concept imagery of more and more complex, dense, and abstract language. And through Paragraph by Paragraph, I will learn how to create concept imagery for longer and longer passages of text and develop greater stamina during reading. They want to keep the former at a level or two higher than the latter. And they want to increase the levels of both in lockstep with each other. I guess they wanted to give me a bit of a break by starting a new book of stories using this approach at level 5.
So after stressing and dithering and talking and talking with my health care team, I’ve taken the plunge and will soon restart my efforts to take back my reading from my brain injury.I wrote previously about a recent comprehensive reading assessment with Lindamood-Bell, a US company devoted to training/restoring reading and math to students and adults, and I also wrote about my results. They confirmed my experience with trying to read long-form materials or even material as short as tweets when I’m tired. I was introduced to the concepts of dual coding theory and reading comprehension through concept imagery. And I learnt more and more about how they would restore my reading comprehension using their Visualizing and Verbalizing Program that they recommended. To be honest, I’m still absorbing it all. But I cannot wait to start. I need my reading back in time for NaNoWriMo; so in my usual brain-injured way, I’ll just roll with it while my brain learns, forgets, remembers some bits, processes, absorbs more info, struggles to integrate, comprehends a bit more, and finally catches up with my actions.After discussing it with my neurodoc*, I’ve decided to contract for 80 hours. It’s the minimum required. Even though 120 hours was Lindamood-Bell’s recommendation to regain my ability to read philosophy textbooks and comes with a 5% discount, I can’t afford it. Or rather the financial pressure of having a large upfront cost would stress out my brain so much, it would probably fight against the instruction. I can always extend it if I need more than 80 hours, but I’m hoping I won’t have to. (Heck, I can’t even afford 80 hours, don’t know where else I can get the money from once the line of credit runs out, tell myself that’s what credit cards are for, and my teeth grit at the thought of carrying a balance on them. But the soul cost of not pursuing this opportunity to get back a core part of who I am is worse than the financial cost, even though organizing it and managing preparation for starting Visualizing and Verbalizing has shot up my busy brain — ruminations that come with brain injury like a hamster shot full of steroids racing on his wheel.)I’m not going to rely just on hope though to make those 80 hours behave like 120. I’m going to use my audiovisual entrainment device to perk up my brain and enhance relaxed, focused attention so that I can respond as optimally as I can to the instruction. I’m also working with the ADD Centre to see if my brain biofeedback protocols can be tweaked to facilitate the neuronal regrowth we want. We’ll be keeping the gamma brainwave biofeedback for sure since it supports my whole brain and “grounds me.”My neurodoc and I had a brief, candid discussion about my coffee purchases. If I cut down on the treats, I can afford the increased cost of upgrading to faster broadband. My current basic broadband is too slow for online instruction with Lindamood-Bell, especially as I’ll be working with their Australia centre. Wow, geographic distance does make a diff. What was OK during assessment with their Minnesota centre was not so hot with the Australia centre with its many moments of video stuttering and audio distortions. But it did the job of discussing my options and getting all my questions answered at once instead of the painfully frustrating slowness via email, with the 14-hour time zone difference slowing it even further.With faster broadband comes another cost: a VDSL modem. Really, you think all you have to take into account is the hourly instruction rate; the next thing you know, all sorts of costs are raising their hands, going count me in, too! Maybe somehow I’ll pay it all off in a couple or four years. I’ve been down this road before. For the last couple of years, it’s been nice not carrying debt in order to pay for my medical expenses in universal-health-care Canada. But I guess that vacation is over. Sigh. By the way, others with brain injury who require medical care not covered by their provincial health care pay for it by credit card. Imagine being on ODSP, living in social housing, and having to pay hundreds of dollars or over a thousand per month for medical expenses‽ Naturally, credit cards get maxed out. Canada’s universal health care is pathetic and impoverishes desperate people even more than being unable to work does. But I digress. If all goes well, I’ll be starting July 8th. Yes, a Sunday. The only time I’m reliably available five days in a row for two hours per day is at night. Lindamood-Bell centres close at 5:00pm in the summer (North America), so that’s why I’m doing it with Australia (winter hours). Their office hours coincide with my night hours. Try to wrap your head around not only a different time but a different date! The contract shows me starting July 9th, their Monday, while for me it’s July 8th! Needless to say, our emails have been full of “your time” and “my time”s!Now that everything is almost in place to start — fingers crossed no more hiccups — I’m counting down the days. But I should probably rest — and rest some more while I can.
*My neurodoc and I have been working things out for about a month now since I fired him and then discovered my brain injury grief, including for losing my reading and the long soul-destroying struggle to get it back, was more than I could handle on my own. However, I wasn’t about to continue the way we had been with him pushing his wrong goals on to me. I figured out a paradigm shift to force him to pursue my goals and only my goals. Sometimes doctors don’t know best. Since he got the message, things have been slowly improving. It helps that we’re learning that he has to explain things better not just assume I’m following his miles-a-minute thinking. He’s also realizing that given my severe abandonment issues, he needs to be more obviously supportive. I’m crossing my fingers, but I think I can say we’ve turned the corner. Trying to find good, appropriate psychiatric or psychological care for managing brain injury life is not easy. Ontario doesn’t cover psychologists for people with brain injury. And too many psychiatrists, who are covered since they’re physicians, treat it with a medication-only approach. Wholly inappropriate and, I might say, injurious. So I appreciate mine learning to do better.
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.
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.
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
The ability to hear phonemes, the sound parts that make up words.
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.
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
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.”
“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?”
“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.
As I begin writing this, I’m also scrolling through Twitter #patientchat; one person tweets that it would be nice if the physician discussed how care fits into the patient’s life and goals.
It would be!
Up until 2013, for me, my life goal was getting back to my life. Oh, I knew I was writing differently, I probably couldn’t return to computer programming, and writing was the only thing I could realistically do with my fatigue and propensity to suddenly not be able to work for long stretches. But somewhere in me, I believed I could return to “normal.” Return to working several hours a day. Return to normal socializing. Return to earning an income. Return to never having to attend another fucking health care appointment.
Then life and PTSD gave me a rude wakeup call. I had to refocus on health care appointments and also religiously treat my injured neurons at home just so that I could get through the day. That went on for years until a confluence of treatments in 2017 finally slayed the chaos in my brain. Ruminations like a hamster in a steroidal wheel slowed then almost faded away.
I resisted then finally acquiesced to the knowledge that my PTSD was not going to be treated in any curative way (some day I’ll write about why people with complex PTSD aren’t getting better and life is a daily struggle to keep functional and nights a nightly hell of tossing sleep). Then this past Christmas, I tired of treating my brain injury too.
Yeah, okay, I’m still attending my brain biofeedback and I continue reading rehab with my neurodoc and I use my home devices just enough to keep pain of every kind at bay and my body ticking along as best it can. But I’m not doing any homework. I’m not thinking anymore about how to work on this part of my injury or that part. Any thoughts on brain injury and treatments are to keep my book blog pages updated. And I’m not working at all on treating my PTSD. It is what it is.
I want to get back to normal life, what I now define as: a day not consumed by health care.
But what do I want to do? Write novels for myself. (No one is buying them and I’m not made of money to spend on taking them to the final published book form so once I write the first draft, what’s the point of revising and editing.) Philosophy of Mind requires me to read. A lot. And really hard stuff. Well, that’s not going to happen. I didn’t get the professional help when it would have made a difference. (Health care professionals are so focused on what they do and what the average is for this function or that that they miss the rare opportunities to radically help their clients.) On the other hand I learnt of the video courses on the Great Courses Plus app, which I’m wending my way through very very slowly. I enjoy photography but can’t seem to dedicate time to it and haven’t been able to in years. I can design and create websites, though it’s on/off, sucks me dry of any energy, and oftentimes feels like there’s a thick concrete wall between me and understanding the back end of a website where all the coding takes place. I can help people with brain injury, like I did last November with NaNoWriMo and like I’m trying to do with Concussion Is Brain Injury, as long as I have energy and don’t have to do it for longer than a month at a time. There are other things I’d like to do. Cooking would also be nice; to make myself yummy nutritious meals without the energy suckage would be awesome.
I return to the question: what are my priorities? I don’t know.
The main character in my new novel has no voice. She’s not me, yet, too, I am muted, most recently, in the relationship with my neurodoc. It’s come to an impasse. He is clinging on with rigid ferocity to the DSM and, though he’s interested in the new ideas of neuroplasticity, he continues to adhere to the familiar-to-him chemical model of the brain, while I demand that he sees my injury as an injury, meaning my issues come out of physiological damage and as the neurons heal, what he calls moods and traits will and do suddenly disappear or flip, something the DSM and chemical models don’t account for.
He’s not alone.
Psychiatry has devolved into prescribing chemicals. Take this and see me in six weeks. If one chemical formula doesn’t work, try another or add another. In the brittle brains of medical specialists, the brain has become a chemical bath that can be manipulated by ingesting or injecting the right solid or liquid chemistry. Forward thinkers aka health policy experts and bureaucratic innovators further maneuvere psychiatrists out of that old fussy model of talking and into dispensing increasingly sophisticated variations of the same type of chemicals. Community-minded forward thinkers look to generics as being exactly the same as brand names: cures for cheaper, thus more responsible to the community, except psychiatric medicines don’t cure. They just mask and symptom manage.
Accordingly, brain injury medical specialists and mental health forward thinkers have evolved treatment beyond the intimate therapeutic alliance between physician and patient to infrequent expert consults and time-limited overview, never mind that a therapeutic alliance is the best buttress against “noncompliance.” When you’re heard and you feel cared for and you’re connected to your physician, especially your psychiatrist, you’re more likely to have your concerns heard, to be given therapy and medicine that’s better suited to your needs, and thus to comply.
But in the forward thinking brittleness of evidence-based modern psychiatry, relationships are obsolete. (That reflects our society; and we wonder why North America is in turmoil.) A relationship that respects and hears the patient, that values their insight and uses it to diagnose and treat, that works with non-medical health professionals, seems to be an anomaly. Add in the lifelong demands of brain injury that’s not static over time, where communication is challenging yet the only type acceptable by the brittle progressive psychiatrists is verbal, and you have an impasse when a patient like me objects to being unheard, devalued, and sexist and culturally stereotyped through the presbyopic lens of the DSM.
If I’d had oodles of money, back in 2009, I would have sought out a psychologist familiar with brain injury. I had been told back in 2001 — and discovered for myself — that you really need a mental health professional who knows and understands brain injury in order to receive good, effective, and understanding therapy to manage the injury and its social, psychological, and economic consequences.
I would now add: needs to be someone who is willing to learn and adopt the neuroplastic model of the brain, to learn how brain injury affects women worse than men, and how gender inequality affects their social and economic lives as well as taking into account cultural differences.
Progressive men who feel proud of how they empower women and grant them equality don’t react too well to women who’ve known all their lives that they’re equal under God and don’t need to be granted it by a man, who come in expecting to have a say in their diagnosis and therapy, even when unable to communicate in the traditional way.
Unfortunately I didn’t have money flowing out of my coffers to afford a psychologist. In Ontario’s version of Canadian universal health care, the government funds only psychiatrists. And so that’s who I had to look for. The University of Toronto has hundreds, almost a thousand, psychiatrists affiliated with their Faculty of Medicine. Of those a handful work in neuropsychiatry, maybe a few understand brain injury, and hardly any work with people with brain injury in the way they need: weekly talk therapy using a team approach with health care professionals who actively treat the broken neurons. The psychiatrist ought to provide the emotional therapy and the others the physiological treatments. Some psychiatrists are joining their psychology colleagues in moving from the DSM and chemical bath model to the neuroplastic model of actually permanently healing broken people. Some so that they can work better as a member of a team; some so that they can actually treat their patients both emotionally and physiologically. I don’t know who would pay when a psychiatrist uses brain biofeedback, for example, as part of their therapy sessions. Our forward thinking bureaucrats and politicians probably ensure it isn’t taxpayer-paid health care. And I don’t think many or any of these psychiatrists are focusing on people with brain injury.
But I bet you no one is approaching reading rehab in the way my neurodoc and I are doing it (even though I became so exhausted emotionally from begging and begging for help that when he finally assented, I could no longer do the work on my own and I’ve become mute in asking for the fullness of what I need). So somehow, though he shot our therapeutic alliance to hell with his rigid clawed grip on the inappropriate-for-brain-injury DSM, he’s committed to going out of his way to help me with regaining my reading. I think that’s a metaphor for my post-brain injury life: every heavily fought-for improvement has come at a price.
Winter light is not the same as summer sunlight. You’d think after practicing walking — seeing, perceiving with both eyes and feet together, learning where I am in space — during strong and long summer sunlight hours, I’d have no trouble in the winter. Nope.
It isn’t just the snow.
The sunlight is sharp, throwing long rays through polarized sunglasses. Bare trees cast patterns of shadow and blazing light in a repeating rhythm as you walk. No matter the hour, the low sun sends photons into your eyes instead of down to the top of your head. And white, gleaming snow reflects it back up.
My brain remembers how my scarred eye used to shut and, in its diabolical plan to return my vision to what it was used to, tries to convince my eye it still doesn’t like the light. I have to fight to perceive that its light tolerance has improved, except when looking extremely sideways to the left. Even when back indoors, my brain is like, hey, it didn’t like the light so let’s shut it against inside light too! Grrr. It doesn’t help my good eye is sensitive to the light as well. (Yes, before my brain injury and eye surgery, I’d walk familiar routes with eyes shut on bright winter days.)
My CNIB guy suggested I get the sunglasses with the top and side panels. That way sun rays can’t sneak around the frame edges. Old people glasses, I think. But then he’s way younger than me and his pair not only has the panels but also sit over his glasses. Then I noticed the baby boomer generation growing older means seeing others my age wearing them too and looking not old, looking chic. But where do you get them?
Last year, after eye surgery, my iPhone display looked enormous. These days, it looks teeny weeny. Amazing how adaptation changes perception. I no longer get dizzy moving my eyes across a wide screen. My brain is used to the sharper-looking text and more depth in the screen colours. My panoramic vision isn’t solid yet, but I’m used to seeing my iPhone display left to right, top to bottom, in one go. No more bits missing like before the eye surgery.
I still very occasionally get double vision, partly because my brain is still fighting to return to my pre-surgery default and discard the new binocular information. But brain biofeedback at PZ (top middle back) to inhibit 16-20 Hz, the thinking brainwaves, seems to be helping me win that fight.
(They call the excessive 16-20 Hz “high-beta spindling.”)
Slowly, panoramic vision outside on the streets and in parks is solidifying – one marker of that is being able to cross side streets without having to consciously narrate every step like I have had to since the eye surgery. Now after brain training I can see the traffic on both peripheries of my vision and process it in real time.
My proprioception is improving again; I’m able to distinguish myself in space with full up-down side-to-side awareness, which means I’m not returning to my old default with bits missing in that awareness. (I’ve just realized I don’t keep bumping into door jambs like I used to!) The first week of November I was able to discern the bottom step of the TTC stairs from the landing peripherally (and for the second week through my feet too) while looking ahead at a fixed point and walking down slowly and carefully.
This is huge!
Being able to go down the visually inaccessible steps on the TTC is a lot safer when one can see the low contrasts and feel the differences. It’s a lot of work and fatiguing trying to navigate the bloody TTC when not able-bodied, able-eyed, able-brained. Have I mentioned I hate it?!
Let’s think about more positive things — like my heart! This week was another in a series of OM Effing G!! Did you seeeee that?!!! As I mentioned before, the goal back in 2012 was to raise my HRV (the measure of how well my heart syncs with breathing) from the basement to a modest 10 and to lower my heart rate from freaky 130 to double digits. Also, to get rid of the scary-ass rises to 170 and drops to 30-50 beats per minute. It’s been a slow slog. Low-intensity light therapy (concussion protocol) where the lights are over my cerebellum definitely began to move things along in the right direction. But now–
My low frequency HRV got to 8.57!!!!!
8.57 uV for low frequency heart rate variability (HRV) during HRV training — basically deep breathing — is stupendous enough but to get 8.24 during gamma brainwave training and again have LF higher than sympathetic nervous system activity (VLF) is WOW!!
LF wasn’t as high during PZ training to inhibit 16-20 but look at that — 5.36 during the first neurofeedback screen! Sweet.
Reducing my 16-20 Hz brainwaves is not only cementing my improved vision, it’s also been working on my trauma-related round-and-round thoughts that whirl up grief, distress, hurt into an ever-intensifying tornado. I didn’t mention the emotion effects to anyone because we were focused on my vision and I wasn’t sure if it was for real, but recently I’ve become sure. My thoughts drop out of the whirling and into clear thinking. Clear thinking is the antithesis of trauma and flashbacks. Clear thinking settles emotions. Relief. Even if it’s only for a few hours or days.
But how is reducing high-beta spindling helping my HRV too?
I came across an article that said the cerebellum is involved in emotional control. We already know it’s tied into the heart via control of the autonomic nervous system. Soooo, using logic — if the cerebellum is involved in emotions and so is the area around PZ, then they must network. And then flow from the emotional control part of the cerebellum into the heart control. Brain injury and healing of injury is like exploring the brain.