Category: Brain Health

Writings on brain injuries, remedies, and interesting tidbits, from the perspective of one who suffered a closed head injury and didn’t lose consciousness. Mild brain injuries are injuries too.

Brain Health

BIST ABI Acceptance Series, Week Two, A Review

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This month, the Brain Injury Society Of Toronto is holding a series of four information sessions about acquired brain injury (ABI) acceptance, adjustment, strategies, and resources. I attended the second one on acceptance, presented by Dr. Bojana Budisin, Neuropsychologist and Dr. Liesel-Ann Meusel, Neuropsychologist, of Lad and Associates in Toronto.The topic was “Learning Strategies for Adjustment and Acceptance – addressing the topic of grief, acceptance and adjustment.” The turnout was much higher than expected, probably for the same reason my posts on grief receive more views than any other of my posts on Psychology Today: Grief is a topic rarely addressed in our rehab and most therapists don’t seem to know how to treat the extraordinary grief of brain injury.

Acceptance over and under grief. Text image.

They began by asking for definitions of acceptance and printing them in large easily-seen capital letters on a giant piece of paper stuck to the wall. There was no shortage of suggestions.

  • Reality as it is
  • No criticism
  • Satisfied with where you are
  • No self-judgement
  • Not judgemental
  • Work with me
  • Respect decisions
  • Respect
  • Loving and liking yourself as you are now
  • Life changes
  • Reduction of anger
  • Letting go
  • Tolerance
  • Not imposed
  • Working with what you have
  • Open to change

It’s interesting that, although the presenters were wanting to focus on our acceptance of ourselves and our brain injury, the word equally raises the traumatic experience of others not accepting nor respecting us.

Budisin and Meusel then showed their word cloud divided into positive definitions and ones associated with negative connotations (in square brackets below):

  • Letting go
  • Consenting to
  • Letting be
  • Opening up
  • [Capitulating]
  • Giving permission
  • Stopping the fight
  • [Acquiescing]
  • [Approval]
  • [Giving up]
  • Giving permission
  • Make space for
  • Allowing
  • Adjustment
  • Make peace with
  • Assent

Acceptance is not saying we give up and stay where we are. Let’s learn to be with those awful emotions as they are so that we can shift our energy to more productive activities.

They emphasized that this session was about dealing with what we can control: ourselves. There are two problems with that concept as it relates to people with brain injury. After ABI and because of the injury, more for some than others, depending on the areas injured, we can’t control ourselves. Can you control a short circuit through willpower or behavioural means? Same idea with misfiring or not firing neurons. When neurons fire randomly, it’s important to treat them neurophysiologically so that they begin to resync again, to regenerate, and in that way, we can regain control bit by bit. The other problem, as one participant noted, is that others impose their anxieties on us. We’re fine on our own pottering about at our own pace and within our lack of abilities, but when in the presence of people who don’t know how to treat ABI, or how to react to our injury-affected meins, they get all anxious. Then we do. It’s been a long time since I was badly affected by this imposition, and I wish back then I’d known others experienced being buffetted around by others anxieties and judgements, too.

Budisin and Meusel defined acceptance as, “. . . means allowing our thoughts and feelings to be as they are, regardless of whether they are pleasant and painful, opening up and making room for them, dropping the struggle with them and letting them come and go as they naturally do.”

They did an exercise demonstrating this principle. Imagine a ruminating thought and its accompanying feelings written on your palms. Now raise your palms to your eyes and hold them close. What can you see? Can you hear, attend, or see the people around you or talking to you? You’re probably more aware of your palms and what’s written on them. Your shoulders and neck are probably starting to hurt, too. This position mimics how dominant the ruminating thoughts and feelings are.

Now, lay your palms on your thighs, still imagining those thoughts and feelings are on them, and push down. And keep pushing. You’re probably starting to get tired. It’s like the exhaustion of pushing your thoughts and feelings away.

Now, rest your hands on your lap, palms up. This is letting the ruminating thoughts and feelings be. They exist. They’re there. But you’re not judging or pushing them away.

Some found this position anxiety provoking. It’s a position of vulnerability, of exposing your emotions to not just yourself but to others, too. And if there’s one thing people with ABI have learned is that we get judged and criticized and told our emotions are wrong — we’re not moving forward or getting over ourselves fast enough — or our emotions are lacking or inappropriate to the occasion. So exposing them is to invite judging. Who needs that‽

Holding one’s hands up is familiar and shielding, as well. Budisin and Meusel didn’t have much to say on this reaction. Their point was to show that letting be is more restful, and it should be. There’s that should word! I was told during rehab to not use the “should” word but perhaps “ought to” instead. Yet in dealing with emotions and grief after ABI, even though therapists are compassionate, we still get an awful lot of being told how to think and feel. Letting be should also apply to others so that we can let be safely.

This is partly why teaching people with ABI acceptance without including community takes years and why I come across people who look like they have it but the moment I trigger their real emotions, they’re pouring their pain out all over me. Not a problem, just rather unexpected and disorienting at the amount of unheard pain I’m suddenly being drowned in. When we’re taught that the only way we’ll be accepted is if we demonstrate acceptance, is it any wonder we learn to mask our true feelings? And then when someone comes along who’s willing to listen and believe, we let all of it out in one tidal wave of despair, pain, relief at being heard.

Budisin and Meusel’s second part of their acceptance definition was, “. . . gives us the skills to stop getting tangled up in our thoughts and feelings, to start thinking clearly and productively, to move forward with what is important to us.“

My very first thought was how does one untangle emotions when they’re being generated, or not generated at all, by injured neurons in a chaotic and disharmonious manner? Behaviour therapy like this is going to take forever without neurophysiological interventions. Even for people with simple anxiety, learning the skills is not easy. When after neuroplastic treatments, the brain is producing the brainwaves of relaxed, focused attention, then we have half a chance of learning and retaining the necessary skills. In conjunction with brain biofeedback or low-intensity light therapy and with the aid of audiovisual entrainment at the start of a learning-acceptance session, this kind of work would be healing and empowering to do.

A key point: our own concept of acceptance will at the end of the day differ from person to person. Accepting the non-acceptance by others is part of acceptance. Budisin emphasized that acceptance takes years and is not linear. It’s progression and regression.

Acceptance work is like dealing with quicksand. To survive it, you lie flat slowly and don’t fight the quicksand. It goes against every instinct. But by giving up fighting, you have more energy.

Suffering = pain x resistance.
Pain is physical or emotional.
Acceptance = taking away resistance.

I assume that means that suffering reduces down to:

Suffering = pain.

There are nine basic emotions for all humans across all cultures:

  • Love
  • Anger
  • Sadness
  • Fear
  • Disgust
  • Curiosity
  • Joy
  • Shock (can be good or bad)
  • Guilt/Shame

These emotions can feed each other. A single emotion can be broken down further, depending upon one’s life. We live in a world that emphasizes happiness and positivity, but only three of the basic emotions are positive in normal human experience. We have to learn how to manage the six “negative” ones.

Budisin and Meusel asked: Why do we need them?

They answered: Each signals to us that this is something we care about.

Emotions are data or signal beacons to something we care about. Better to feel them and label them accurately so that we can better discern the precise cause of our feelings and more accurately take steps to move forward. I thought of how I needed my health care professionals to help relearn how to identify emotions when they began to return after well over a decade of being absent, and how difficult it was when they either didn’t or simply labelled them all as anger and frustration or my injured emotional centres as depression. Accurate identification is the only way one can (a) relearn how to identify emotions and (b) be heard. When psychiatrists take the easy route of labelling them all as solely depression or anger, we lose out.

Budisin and Meusel used an iceberg analogy for emotions.

Iceberg

Anger often is like an iceberg. Others see our anger, the part of the iceberg that’s above the ocean. But so much more is underneath it, and that’s the primary, raw emotions that’s driving the anger. Those are the emotions we, all of us, need to listen to, the part of the iceberg that’s below the ocean surface. Anger is more complex than just anger.

What is anger?

Anger: protective nature. One feels energized and stronger. A bit out of control. Flight and fight. With anger, you can defend yourself and others around you. Ready to protect the raw, vulnerable emotions that’s driving it. Those raw emotions are often sadness, being hurt, being tricked, helpless, embarrassed, annoyed. If you remove the anger, you expose the vulnerable emotions. Those are the signal emotions. And those are the ones you want to acknowledge and work with. That’s why open palms creates anxiety as it reveals the vulnerable under-the-ocean iceberg.

But when health care professionals — especially psychiatrists who are the only ones covered by medicare and thus affordable — would rather avoid us or not deal with our issues or farm us out to “experts” who know just as little, how do you state your need? How do you safely show the signal emotions? How can you get them to hear us?

Budisin and Meusel moved on to grief.

Grief

Recognizing grief is complex because of the overlap with ABI and PTSD. That’s when we get the feeling of dealing with so much. That’s why therapists start chipping away at something so that they can reduce the overall load we’re carrying. Having a good conceptualization and understanding of what’s going on is important, and hopefully health care professionals will recognize that and tease out what is what. To do that, they’ll work in stages, eg, to get rid of acute symptoms then after that they’ll start addressing grief.

Phases of Grief
  • Denial
  • Anger
  • Bargaining
  • Disorganization
  • Despair
  • Depression
  • Acceptance

The aim of grief work is to process through the stages so as to reach acceptance but rarely is the process linear. It goes back and forth. Lasts for years.

Even at the end, acceptance can be partial and fluctuate.

Denial. Immediately after loss of self. I’m fine, and I can go back to normal life.

Anger. Frustration because of injustice and loss. Why me? What did I do wrong?

Bargain. What if I implement x then I can improve. Or if I just push through, things will resolve.

Disorganization. Trying to implement strategies leads to disorganization. Confusion. Who will I be? Exponential if also have injury-related confusion.

Despair. Loss of hope. Things will never get better. No change.

Depression. Like above.

Acceptance. Things are as they are. Accepting pieces of it.

A complication is a person goes through this process as a new self in order to become a new new self.

Acceptance involves developing skills that help you avoid getting all tangled up and carried away by painful thoughts. I notice I’m having the thought that x. This noticing creates a bit of distance. Also you can write it down to create distance. When you get tangled up, you get strong emotional reactions.

Thoughts are not always as true as they feel. We see things as we are not as they are.

Weather Report

One idea Budisin talked about is to learn to sit with painful feelings and notice them like we notice the weather. Do a personal weather report to validate them and then focus on the present. Am I sunny or is there a storm raging inside or is it in between? Rainy with sun? But don’t think too much about this report. Simply summon the report, notice it, and let it be. They wrote in their handout:

“By sitting with uncomfortable and unpleasant feelings and sensations and letting them be as they are, you’ll come to find that they will invariably pass on their own, in time.”

Palms in lap.

The only practical idea I heard on how to grieve was in a question they briefly posed: Have you commemorated aspects of yourself before ABI? They didn’t expand on it nor spoke about how they do that with clients.

I didn’t stay until the end because the session went over time and I had to leave at its scheduled end. I was also quite tired. There was a lot to take in plus I was taking notes. The part I missed was a 15-minute video TED talk they showed.

The next day I began to have flashbacks to my insurance battle and the many, many ways kind-meaning therapists didn’t hear me when I had no emotions. I survived those awful, awful years because my affect was off, as I wrote in my book Concussion Is Brain Injury: Treating the Neurons and Me. Suddenly, the week of the info session, all the emotions a normal person would have had when I was fighting on six fronts (my ex, my family, my insurance company, the tort claim, my friends, and my injury plus trying to find treatments that actually worked to heal) barrelled in to my consciousness, sucking all the oxygen out of my life. They’ve waned this week in the face of having to deal with my schedule being disrupted and having to adjust to another new routine. Just another week in the life of a person with brain injury when they have only the minimum or don’t have at all the medical, community care, social, and emotional support they need.

Brain Health

Eighteen Years, Eleven Months, Three Weeks

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flic.kr/p/2bcpboE

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.

Brain Health

Watching Like I Read: Visualizing and Verbalizing

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Great Courses Plus Mind-Body Course ScreenshotAs a NaNoWriMo winner last year, I received a sweet deal on a subscription to Great Courses Plus. I signed up for it because it had a series on Philosophy of Mind. My thinking was that if I couldn’t read my Philosophy of Mind texts and course work from 2012 well enough to remember, maybe I could watch a series of short video lectures and learn that way. It sort of worked. I couldn’t watch a 30-minute lecture in one go, and I didn’t remember much better. Actually, I don’t recall any of what I watched.

As regular readers know, I spent the summer relearning how to read with comprehension and began reading Philosophy of Mind again, this time being able to understand, remember, and extrapolate. Still, it’s tough. I can read only a few or two paragraphs at a time. So before my subscription ran out, I thought I’d re-watch the 30-minute lecture on Descartes and dualism to augment my reading.

Well. That was different!

I created imagery as I watched, just like I do when reading. It was kind of automatic, which is a really good sign that my brain has changed as a result of my reading rehab ie Visualizing and Verbalizing with Lindamood-Bell. I used a lot of the imagery I had created while reading Descartes’s meditations and some of the related course work.

The most astounding part: I understood the lecture at a much deeper level than I had prior to my summer of learning how to visualize and verbalize what I read. This week, I remembered bits he mentioned in his lecture that I hadn’t known or remembered from when I first watched his lecture or took the Philosophy of Mind course back in 2012 (what I’ve reread of the course so far didn’t mention the bits I learnt from the video lecture). I was able to connect the dots, almost seamlessly. I also watched the entire lecture.

I’m actually watching shows and movies with fewer stoppages, too.

As a result, it was far more enjoyable — the mental work paid off. Just like with reading. The only thing I didn’t do properly was verbalize what I’d watched: speak out loud a word summary, tell myself the main idea, ask myself higher-order thinking questions. I should do that next time.

When you can watch or read with comprehension, it’s not a chore, it’s not disheartening, it’s rewarding.

So since I was again a NaNoWriMo winner and Great Courses Plus again offered a discount and this time in Canadian dollars, too, I re-subscribed so I could start watching the lectures all over again. And this year finish the series.

Brain Health

Starting Week Six Visualizing and Verbalizing Paragraphs with a Laugh

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AnglerfishVisualizing and Verbalizing is tough work. By the end of the week, I pay bills, walk, then collapse in front of Netflix. And so I asked for a bit of an easier time during week four five as I had been invited to attend an all day co-design event hosted by OCAD’s Inclusive Design Research Centre for Sidewalk Toronto (more on that later). The Associate Director programmed sessions of Whole Paragraph at grade level 7, rising to level 8 on night three, and Paragraph by Paragraph at level 6. The first two nights I did one three-paragraph, Paragraph by Paragraph (PxP), and two four-paragraph ones. Let’s just say, four paragraphs is  looonnnng. My brain gathered weight; my eyes felt stuffed. The second night, I recalled my very first four paragraph PxP out of order. First, I began my recall at paragraph three to the end of paragraph four. When I stopped, paragraphs one and two began to seep into my memory. I strived to recall those and remembered them out of order, too. However, maybe because it was so effortful to read and recall, it’s about the only story I can remember out of all the stories I read last week. Huh.

On night three, they raised the level of Whole Paragraph to 8. Then after one more four-paragraph PxP, they dropped them back down to three-paragraph ones, to my relief.

On night four, during the first three-paragraph PxP, after I’d read the first two paragraphs, I was asked to predict what would happen in paragraph three. My first Higher Order Thinking (HOT) prediction question! When I’d finished reading the third paragraph, the clinician asked me if my prediction had turned out the way I’d expected. Not quite.

Today, three nights later, at the start of hour two of my session, I could not recall a single story I’d read Thursday night, but I did do an excellent job recalling that four-paragraph one from a week ago. It did help that during the first hour when the Associate Director was testing me with various stories one of them was a Whole Paragraph on the same subject: humans learnt to make paper from wasps. It triggered my memory.

Tonight, the first night of week six, was interesting because hour one wasn’t the usual training session. The Associate Director had me visualize and verbalize a loonnng Whole Paragraph, a three-paragraph PxP, then we entered the big leagues: a Whole Page. My word summary of the PxP impressed her. I relayed all the details; I self-corrected when I forgot something and went back to recall it in its place; my eyes were moving as they do when looking at mental pictures; and my language was smooth.

I said: it felt like a marathon!

But, you know, that feels good. It means I’m working my neurons, and my neurons are responding.

She also liked my main idea for the PxP; I’d captured the gestalt that they look for, the big picture of a story. It’s the big picture that has eluded me all these years, and in neuro terms, comes from high-frequency alpha brainwaves, I believe. I told her how my main ideas for the last two weeks have been popping out of my mouth so easily — except for last Thursday night. But on Wednesday, I’d exercised my brain’s new ability to focus in distracting environments and to create designs in a really exciting team format. By Thursday, my brain had regressed a bit in running my body, leading to increased pain, stiffness, and fatigue fatigue fatigue. By Friday, I moved like an ancient stone statue; I did only the bare essentials all weekend to recover in time for tonight. So I’m feeling pretty good I’m back to popping out those main ideas again.

By the time we came to the end of the Whole Paragraph and PxP — me reading them, giving a word summary, having my pictures checked, coming up with the main ideas, answering HOT questions — I was starving. I’d been stuffed from supper when I logged onto Lindamood-Bell, but I guess my brain commanded my stomach to accelerate digestion and demanded even more fuel. I didn’t want to take a break to get a snack because of what me and my neurodoc had figured out is an unexpected benefit of this work.

This intensive cognitive work, with humans keeping me steadily engaging with language for fifty-five minutes even when I’m dying from energy drain, seems to have increased my brain’s ability to focus in a distracting environment.

I didn’t like the lights where the co-design event was held. There were about twenty or so people in the room, four other teams co-designing at tables behind me. Yet I was able to follow the others in my group, understand and riff off of their ideas, create my own, and then participate in the presentation, both in the morning and afternoon. Yeah, I had rivers of coffee and high-kicking chocolate running through my blood, powering my neurons, but I’ve never been able to focus like that since my brain injury. The Associate Director observed that when a cognitive activity is effortful, it’s easy to be distracted. When I learn through Visualizing and Verbalizing to create imagery when I hear language, I can attend automatically. Cool.

Whole Page follows the same process as Whole Paragraph except it’s a page long, in this case three paragraphs together like you would see in a magazine or book. This made me realize that with PxP, the story is formatted with a line space between each paragraph to denote visually when to stop reading and to discern the paragraphs easily. Making a movie in my head while reading a Whole Page felt like trying to start a stuttering car. My images were coming in stutters or not at all. That was the end of my mini-assessment for deciding what she should program next in my sessions. This week we’ll push the PxP and try Whole Pages; next week we start reading my materials. Yikes!

The second hour was a regular training. I read a grade level 9 Whole Paragraph; the clinician read a level 9 three-paragraph PxP (what a jump in levels!); I read another level 9 Whole Paragraph (which I’d read a couple of weeks earlier I realized after I’d begun reading it, but I kept going and discovered I could put more movie-like bits into my images than I had before). With only a couple of minutes left and night fallen in my time zone, my clinician had fun with the HOT questions. To her first question, I answered nightcrawling deeply icy amoeba. She asked me: what would you call an anglerfish crossed with a penguin? An anglerguin, I answered. I had a good chuckle as she fell over laughing.

Update: I got my weeks wrong. It was the start of week six when I wrote this, not week five.

Brain Health

Visualizing and Verbalizing Four Paragraphs with Lindamood-Bell

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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.

Brain Health

Reading after Brain Injury: Making the Decision to Try Restoring It Again

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Why creep when feel impulse to soarSo 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.

Brain Health

Another Step in Restoring Reading after Brain Injury: Reading Evaluation by Lindamood-Bell

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Concussion Is Brain Injury CoverAs followers of this blog know, reading issues continue to plague me. A couple months ago, Dr. Lynda Thompson of the ADD Centre suggested I do a reading evaluation with Lindamood-Bell as she felt this would show me I don’t stack up too badly against the norms for my age group and gender. Lind-a-what?? Took me at least a week for the letters in this unusual name to make sense in my head. I made an attempt to check out their website.

I usually investigate people or institutions before I spend my money. But in this case, because I’ve been so worn down by the last two years, consumed by brain injury grief, given up on my reading, I went only as far as determining that they’re legitimate and seem to have ideas about reading that I’d never heard of — and most importantly Dr. Thompson had recommended them — before calling them to schedule an appointment.

The Toronto office doesn’t have a physical location and the online interaction is handled by their Minnesota office. After a couple of time zone snafus, the centre’s director and I spoke on the phone and arranged for an evaluation to be done over two days. She didn’t want fatigue to interfere with the assessment, and from the beginning of this awful brain-injury-recovery slog, I usually try to divide up assessments so that I can continue to function in daily life or not have to nap for days after and deal with a migraine to boot. Insurance companies aren’t too pleased sometimes with that; people who care about your health are cool with it.

I’ve had no experience with telemedicine. After this evaluation, I’m a fan. I didn’t have to wake up an hour earlier and lose valuable sleep so as to be able to commute to a clinic. I could see and hear the person really well. Not so sure about her me because my computer’s webcam is kind of old. At least she could hear me well.

I had bought a decent-sized display two years ago when after my eye surgery my new vision demanded a better monitor. That display showed both her clearly and the documents conveyed through the document camera or the words on her screen that she shared with me a couple of times. She used Apple earbuds to speak to me, and so I never heard the construction noise in the background that apparently started up midway through the test. Also, my voice didn’t blast all over her office. Privacy!

Best part of the e-evaluation: I was able to be comfortable in my own environment, dress in partly sloppy non-constricting clothes, and not worry about organizing myself to get out the door.

All my energy went to doing the evaluation.

This is huge when you have a brain injury and every single thing takes energy from you.

We launched right in with a vocabulary test unlike any I had experienced before. Usually they give you pages on which words of increasing difficulty are listed and beside which are four other words that you have to decide which one is closest in meaning and circle it. In this test, the assessor spoke the word and I was presented with four illustrations and had to choose which one represented the word.

This test was looonnnnggg. And tiring.

There were a couple of words I couldn’t understand and she spelled them out for me. Apparently, me asking her to spell out a couple of words told them something about how I prop up my reading. More later. There were also a couple of words I’d never heard of before, one of which I couldn’t even begin to parse out to decide which illustration could represent it.

Some of the next tests reminded me of Cogmed exercises I’d done last year and had continued to do in a maintenance form up until early January 2018. I also relied on my cognitive psychology lessons on memory to know how to accomplish the task given me. Chunking and pattern recognition is a great thing.

One test where I was shown for a few seconds . . . let’s say a series of increasingly more letters sometimes in nonsense words, sometimes seemingly random . . . then was asked questions on them, I knew exactly how to do. But my brain had to work SO HARD to do it, my head felt like it had exploded. We had to take a break then she gave me five minutes to put my head down while she turned off the screen. I did extremely well but strained my brain to its max because I have no automaticity in these cognitive skills. Automaticity is what happens when, for example, you learn to walk. At first, you have to focus on every aspect of it. Slowly your brain learns what to do and now, as an adult, you don’t think about starting your legs, moving your legs, you just . . . walk. I guess that’s a metaphor for brain injury. You know HOW, sometimes you can execute HOW but the fatigue cost is enormous because the injury took away all automaticity and/or broke the neural networks to execute a particular skill.

Because it was obvious I was doing well on the vocabulary, spelling, etc. tests, especially that head-exploding one, I commented that this is why people don’t believe I have reading problems. Although I have improved bit by bit, I still struggle enormously with the length of material and acquiring new vocabulary. She said that’s why they have tests for that. They were coming up and would be divided across the two days.

She proceeded to wring out my brain with stories I had to answer multiple-choice questions for. I’ve endured so many neuropsychology tests that include stories that I ace because they’re not new to me and my recall of facts of a story isn’t bad in the short term, that I was skeptical.

I read out loud the first story. She took the story away and put on the screen multiple-choice questions and read them out, one by one, and their answers as I followed along. This seemed like the usual, except that I had to read the story out loud. And she had given me a brief synopsis before showing me the story through the document camera.

The second story dispelled any idea that this was same-old, same-old. Every story was in a solid paragraph. The paragraph stories varied in physical widths, sentence lengths, vocabulary length and difficulty, and other aspects. The questions too were not same-old same-old recitation of facts. They required the kind of comprehension you need in a high school English class aka what is a character feeling or what is their motivation. I needed to be able to create a picture in my mind of what was going on. I can barely do that and hang on to a concept image for my own writing!

After I completed the evaluation, restored my brain with one of my neuromodulation devices, and napped, I thought about how the story test got at the reading skills I learned in high school and university. I remember in one class, our teacher showed us the longest sentence ever written and showed us how to read it. In another class, I was taught how to use an unusual word such that a reader who wouldn’t know it could guess at it from the context.

That test and the story one I did on the second day that had open recall questions spoken to me (not shown me like with the first paragraph test), were the first I recall doing that got at those high school reading skills. Because they jogged my memory of those classes, I can now articulate better one of the skills I’ve lost and haven’t regained all that well.

After a pronounce-these-letters-and-two-letter-combos test, I realized another issue my brain injury created in me. Basic verbal language abilities I had mastered as a young child were gone and I hadn’t noticed. I had also not had any review of those skills during neurorehab in 2000-2001 because I could speak. It didn’t matter how I spoke, the fact I could was good enough, and we focused on communication. Looking back on that, I have to say we barely got started in addressing all the communication issues either that I faced over the years.

After I got the results summary, I looked up some of these tests and, briefly, the origin of Lindamood-Bell, and I have to ask:

Why were these tests not given me in 2000 when I was told I couldn’t read?

They would have teased out where the problems lay and the team would never have advised trying audiobooks. Doing a qEEG would also have told them I have auditory processing difficulties. Failing colossally when I followed their advice to read audiobooks instead of text was probably when my self-confidence began to drop.

I have the results and recommendations from the reading evaluation. Will write on those later. I’m gobsmacked and finding it difficult to process it all. One thing I will say: restoring the brain after brain injury costs A LOT BECAUSE Canada’s universal health care doesn’t cover it. Are you aware?

Brain Health

Neurodoc Chronicles: Reading Rehab and Unheard Brain Injury Grief

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I emailed my neurodoc a long time ago a tweet about what reading means to me. He’d repeatedly said my emails were important; he understood they were my way of communicating what I needed to talk about during our sessions. He printed, signed, filed it. And he wonders why he isn’t succeeding with me.


As far as my neurodoc seems concerned, drugs and the DSM are the only answers. Using newer communication methods is, well, he’s not going to do it. Learning about 21st-century discoveries of the brain and brain injury aren’t actually to be acted upon. Working in a Toronto teaching hospital, one can’t be too forward thinking, y’know. After all his ABI expert colleague didn’t want to burden his brain with 20+-year-old knowledge of thermoregulation. Better to tell the patient to get on with their life than help them. But I digress.

Let me help my neurodoc figure out what to do.

He could’ve printed out that poster. At our session immediately following me sending that email, he could’ve shown me the poster and read it out to me then asked: “Tell me how you feel or what you’re thinking as I read that out to you?” I probably would’ve bumbled around or resented being asked how I feel since half the time back then I had no clue. So then he could’ve brought up each pictogram, maybe mused about what he thought, and drawn me into a discussion. That at least would’ve started my thinking. It would’ve brought up memories. And memories would’ve dragged up emotions and the grief — over time. Doing that only for one session would’ve stopped the process of my broken brain remembering, reconnecting memories to emotions, processing the grief. Sticking to that topic over the next few sessions would’ve continued that process. But, y’know, email.

My futile attempt at communicating some deep, hidden-to-my-conscious mind emotion I could barely talk about all began with an email. And since the Ontario government won’t pay for emails and Canadian physicians think emails are the devil’s work or way too innovative or something like that, my grief over losing my reading went unheard. This was one of many attempts I made to get reading rehab going, to have my grief over losing the core of my identity being heard. Telling him that being a reader who inhaled books like opium — well, that went unheard, ignored, dismissed, shut down, year in and year out while I dragged him like a dead weight to help me rehab my reading, one agonizing step at a time, with rising hope as I glacially made progress only for him to “forget” the rehab, forcing me to remind, nag, beg to resume again. I’ve put my neurodoc on hiatus. The emotional cost of reading rehab is no longer worth it.

Brain Health

Brain Injury Grief: The Experts Begin to Recognize and Define this Profound Loss

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The last time I tried to find some info on grief and brain injury, I found nothing helpful. This past week, I half heartedly looked again. I was surprised and heartened to find that brain injury grief was being recognized at long last. Skimming articles from the US and UK validated my belief that brain injury grief is a different and much more difficult beast than other kinds of grief.

Janelle Breese Biagioni wrote on Brainline: “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is….”

I’m not sure society is recognizing it. After all when most health care professionals don’t and I see person after person having to subsume their grief or being labelled depressed, you know social work and psychiatric care hasn’t evolved in this area yet.

Biagioni continues: “Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.”

I so relate to this list up to sadness. And brain injury does complicate it because it causes confusion, disorganization all on its own. PTSD also overlaps many of those listed states. How does one tease out the cause for each? How does one address multiple causes for one state and know which order to treat the causes or if best done simultaneously?

She continued: “If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.”

I have to wonder if we need to develop new rituals of mourning for internal deaths, deaths like reading, identity, musical accomplishment, hobby skills, memory, specific identity memories, sense of humour, emotions, etc. And then also develop rituals when some of them return in part, distorted, not the same or maybe fully suddenly years and years later. The pre-injury person suddenly returning isn’t always welcome — it’s another change after having adapted to fundamental change and perhaps you’ve come to like some radical new parts of you, like I liked not being so self-controlled to the nth degree. It was so freeing.

Dr Rudi Coetzer on Headway U.K. wrote with great insight: “brain injury survivors and their family members often find traditional approaches and support networks are unable to adequately address the problem. Reaching the acceptance stage is difficult and by no means a certainty, but after brain injury things can be further complicated by the unfamiliar, complex and often unpredictable effects of the condition…

“From a more academic perspective, factors such as time since injury, awareness, family support, pre-injury personality traits, social networks, and severity of the injury can all influence the person’s experience of grief.

“Furthermore, there is often a focus in the literature on the loss of ‘how things were’, but again, as a clinician, working psychotherapeutically I also often hear about the grief regarding the loss of ‘what might have been’, were it not for the injury.”