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.

Health

Nineteenth Brain Injury Anniversary

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The brain project, flamingo painted on a brain to represent mental vacation

It’s been a year of painted brains, painted masks showing the experience of injured brains, and no change. Awareness gets you nowhere, it seems. It’s been a year of screaming for help, giving up, and only then getting effective reading comprehension restoration and grief therapy. The irritating reality-denying be-positive messaging finally stopped, and the healing effects of getting the crucial help I’ve been seeking for my reading for almost two decades began.

I wish though I hadn’t had to yell and beg for the help I needed over and over and over and over. I wish people had had the courage and stamina to support me from the start in my recovery. I wish health care professionals had the excitement in their hearts to ditch the neglectful standard medical care of brain injury and innovate so as to give innocent people their lives back.

I hate brain injury. I hate that I had to pay the price of being traumatized to get the effective treatments and support I needed. Why are people so loathe to help the injured?

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 Power

The Collective Toronto Yawn for Canada’s Brain Injury Awareness Month

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Love bot at CHIRS, a place for people with head injuryDiversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.

During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.

All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.

Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.

Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.

And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.

So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?

No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?

Brain Power

The Collective Toronto Yawn for Canada’s Brain Injury Awareness Month

Posted on

Love bot at CHIRS, a place for people with head injuryDiversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.

During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.

All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.

Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.

Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.

And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.

So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?

No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?

Brain Power

Reading Evaluation Results for Comprehension Issues After Concussion

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I wrote last time about my reading evaluation. This post is on my results. When you have a brain injury and rehab tells you that you can’t read anymore, you assume that they’ve done a thorough assessment and analysis of your reading cognition.

You’d assume wrong.

Reaction

In 2005, five years after I was told I wasn’t reading the ubiquitous mass paperback in my hand, I had a qEEG done, which told me the neurophysiological basis for why I had so much difficulty reading. The first week of June 2018, I underwent three hours of testing over two days that assessed my auditory, visual, and language foundations of reading; my fluency; my comprehension; and my concept imagery.

Reading illustration of how we read

Huh? Yeah, I’m still learning these too. They match with my experience, but they introduce concepts that I haven’t heard of before or only knew about from a different perspective. I learnt more about where my reading difficulties lie.

My very first thought was: why did I not have these tests done during rehab in 2000? Why did the medical system not assess all my cognitions with full, appropriate qEEGs and these kinds of reading, writing, and math tests?

If I had been properly assessed, not just given a neuropsychological test people with high intelligence can ace, injury or no injury, I would have had a complete picture and been given a precise scientific and medical explanation of why I couldn’t read anymore, not just a general statement of you can’t read.

I also don’t even know how to process the fact that when I asked my neuropsychiatrist for help with reading that the reading expert he consulted pointed to the aphasia website and didn’t tell him that I should have all these tests done, the ones I’ve just undergone. It’s been bad enough I had to wait twelve years for a reading “expert” advice, but to have not known about these tests for a further six years because the medical and “reading research” community are so intellectually lazy is beyond egregious. I’m pissed. And upset. And filled with hope that finally I’ll get my book time back.

I’m still processing my results.

Results

It’s difficult to explain what one is only just starting to grasp. Lindamood-Bell who conducted the evaluation, normed all results to my age and gender.

  1. 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
  2. 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.
  3. 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.
  4. My accuracy in reading words is very high.
  5. Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
  6. 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.
  7. Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.

As I understand how Lindamood-Bell conceives of reading, reading comprises decoding and comprehension. Decoding is done in the reading foundations aspect of reading. There are three parts to reading foundation: auditory, visual, and language.

“. . . thinking that reading is decoding a word but reading is being able to comprehend.” Nanci Bell

Auditory

The ability to hear phonemes, the sound parts that make up words.

Auditory processing illustration

Visual

The ability to recognize and pronounce high-frequency words. The ability to spell high-frequency words, that is, words that are used often in everyday reading. And the ability to image symbols, that is, letters or letter combinations.

Visual processing illustration

Language

Vocabulary. And the ability to figure out an unknown word within the context of known words.

Language processing illustration

Encompassing these three foundations of reading is comprehension.

“If there’s weak comprehension, … frequently teachers and parents don’t really know perhaps there’s weak comprehension. . . . If it’s really severe could be labelled hyperlexia there’s a gap between ability to read words and ability to comprehend. Or if it’s weak enough, it can fall into the label of autism.” Nanci Bell

Comprehension

Comprehension illustration

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?!!!!)

Dual coding theory illustration

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.

Concept imagery illustration

Nanci Bell, co-founder of Lindamood-Bell, explains the comprehension and concept imagery side of reading in this video below. Note that what we often think of as reading issues, eg, dyslexia, occurs on the decoding side of the ledger. The comprehension side isn’t usually talked about. It usually doesn’t even have labels like the decoding side does. I personally don’t think labels are always useful, but in our current milieu where everything is labelled, a label gives credibility. I think that’s why when people with brain injury say they have trouble reading yet can read words and use some or a lot of their vocabulary, health care providers, family, and friends don’t believe us. But as Bell says, vocabulary is not comprehension.

Now comes the tough part.

Restoring Book Reading

Lindamood-Bell said: “we can restore your book reading.”

Pause.

“What’s so tough about that, Shireen?” you might ask.

This is like where I describe in my book how I met clinicians in 2005 who knew what I wanted — to heal my brain — and said they would help me do that and could. It’s so hard to describe in a blog post what it’s like to be neglected medically, your angst and desires dismissed, and told to accept diminished functionality for years and years and then be told you can be helped significantly — and then you find out the help was available at the time of your injury; it’s just that the people entrusted with your care didn’t know about it or “believe” in it and your loved ones never searched for you.

Once again, I’m being told the unbelievable, that what I’ve wanted for years is in fact doable. It feels untrue. I asked:

“When you say I’ll be able to read a book like I used to (before my brain injury), do you mean a book at the level of an Agatha Christie? A PD James? Neuroscience article? And/or philosophy of mind textbook?”

They answered:

“In creating your recommendations for instruction, the goal I had in mind was your ability to read and process literature at the level of your potential, and at the level that would support research and continued learning for your writing. Especially with the full recommendation of 120 hours, I picture your ability to access all of the examples you provided in your original question. Our instruction may start at a lower level, but over the daily and weekly sessions, you’ll see an increase in the amount of language (text) you are processing as well as the complexity.”

Basically it would look like an ascending ladder of difficulty.

Visualizing and verbalizing program illustration

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.

Health

Weighted Blanket: Using It with Brain Injury, PTSD, Fibromyalgia

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Several months ago, one of my brain injury tweeps told some of us how she’d gotten a weighted blanket for Christmas and was sleeping snug as a bug — at last. I hadn’t heard of a weighted blanket before. She explained how she’d heard of them through her work with children with autism, and I looked more into it. As I did, Ballast Blankets out of Alberta reached out to me on Twitter, I checked them out and liked their business culture, and I bought their teen size with the assurance of a 30-day money back guarantee.

My biggest concern was my thermoregulation issue: was I better enough to tolerate the heat from sleeping under a 7 kg blanket? Could I lift the weight regularly to wash and make the bed? I decided no and went with a lighter one.

https://twitter.com/shireenj/status/952176654310309888?s=21

Apparently, weighted blankets work similar to deep pressure touch and so create a sense of calm.

“While research on weighted blankets is sparse, deep pressure stimulation has been found to calm adults and children with anxiety, autism, and attention difficulties, researchers say.” WebMD, Seeking Better Sleep Under a Weighted Blanket

To do that, they must be 10 to 12 percent of your weight. Because of my shoulder and neck injuries from the car crashes years ago, I couldn’t imagine having to lift, adjust, sleep under a blanket weighing ten percent of my weight. The teen size is about 8 percent.

I received it as the Olympics were beginning. Uh, bad timing, Shireen.

It’s very difficult to gauge the effectiveness of a new measure to improve sleep when you’re staying up until all hours and/or waking up super early to watch athletes compete on the other side of the planet!

https://twitter.com/shireenj/status/964889294090403841?s=21

The friendship with my new blanket was a bit fraught because of the Olympics and then the Paralympics and, as well, the usual adjustment period that Ballast Blankets referred to.

I had the blanket lengthwise at first and under my coverlet. But that was too heavy, and I snored! I don’t snore. Not good. I folded down the coverlet so it didn’t add to the blanket’s weight. The second problem was my feet hurt from feeling weighed down. Also, although they’re usually cold, they heat up during the night, and under a weighted blanket, they became red coals. I find it’s better to wear socks and have my feet only lightly covered, weighted blanket or no weighted blanket.

I turned back to the internet and read again others’ experiences. One person used the blanket horizontally to cover both herself and her husband. I decided to try that and stretched the weighted blanket horizontally across my bed, covering me from just under my neck to below my knees. I used my coverlet to cover my feet and just lap over the weighted blanket.

Much better.

Once I recovered from the Olympics and Paralympics, the effect of the weighted blanket began to take hold. Some nights I got restless; trying to turn under the weight hurt too much. But over time, I got used to how to lift the weight and adjust my position. Restless nights have lessened overall though. I also am using my audiovisual entrainment SMR For Sleep session much much less as I’m not usually still awake at 1:00am . . . 2:00am . . . 3:00am. It’s true, my sleep had been improving. But it began to feel more solid, more like I was falling asleep quicker after my hypothalamus fix night session, and even getting sleepy before 11:00pm or midnight. These amazing changes that I’m still adjusting to could be because of the blanket and/or my PZ brain biofeedback protocol that I’ve talked about before.

It wasn’t just my subjective feeling that showed improved sleep, but also the sleep app I’ve been using for years. I don’t know how sleep apps determine “sleep quality,” but however they do it, it immediately shot up. It took awhile though for it to create a measurable improvement in my sleep. That improvement has remained consistent or risen slightly. Although, one may dispute how apps measure “sleep quality,” it is a consistent method, so I think the measure of improvement is valid.

Sleep app screenshot showing weighted blanket improved sleep by 3%

Once I got used to the weight, I was like other reviewers and actually found it comforting. As summer heat approached, I began to worry about what I’d do . . . maybe use it on the couch like some do during daytime rests or naps. Instead, when temps soared and I began to burn, my body and brain pulled the weighted blanket up to about my shoulders, letting my feet stick out under a sheet. During the night instead of shoving the thing off me to cool down, it crept up closer to my neck. It seems that I’m so used to it now and that whatever it does to help me sleep, burning and mildly sweating* doesn’t deter me from using it.

Researchers are considering looking at using weighted blankets for fibromyalgia, but so far, I couldn’t find anything on how people with pain, physical injuries, or conditions like fibromyalgia tolerate it. From my own experience, perhaps less than the standard weight percentage may be tolerable and still provide some benefits. I think if I had no pain, it would be even more effective in countering the bad sleep effects of brain injury and PTSD.

As for Ballast Blankets, I found them pleasant to deal with and would recommend them. (I received the same discount offered to all early buyers.)

*I’ve written before about my injured brain’s inability to regulate my temps and to sweat, and I wrote in Concussion Is Brain Injury the possible neurological reasons why. I am still not normal apparently: sometimes I sweat and can cool down; sometimes I just burn.

Health

Two-Headed Monster of Brain Injury and PTSD

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Two headed striped caterpillar on milkweed

The weather gods jumped our temps from jacket cool to sweaty tank tops. Pretty soon, we’ll be seeing caterpillars munching on flower buds and leaves as this two-headed monster was on a milkweed flower last year.

Brain injury and PTSD are like a two-headed monster sitting on your psyche, slowly munching on your sanity. When one head gets fed alternative fuels to calm it down, the other chews harder on your brains. There are days when there seems to be no solution.

I think I’m supposed to give you hope at this point, talk about how a kind psychiatrist can soothe one head while the other gets calmed and then switch to the other head while the one they was soothing is fed. Or talk about how psychologists advanced in treating brain injury with 21st century technologies can calm both heads at once. Or maybe talk about how inspirational quotes make the heads feel great. Or perhaps talk inspiringly about endurance and grit as psychologists keep feeding and psychiatrists keep soothing the monster.

I have nothing. I’m tired. An old friend reminded me I hit these plateaus. True. I’m still tired though. I think I just need kind listening and supporting as the two-headed monster grows a third head called grief and all three masticate my brain.

Books

I am a Psychology Today Blogger!

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I'm a Psychology Today Blogger -- my First Post!

My New York publicist for Concussion Is Brain Injury: Treating the Neurons and Me has been working hard to acquaint various media outlets with my book and persuade them to review it. Psychology Today was one of those media. But they decided against reviewing my book — sigh. Instead, on April 17th, they wrote my publicist to invite me to become a Psychology Today blogger! They ended their request with, “Thanks again for reaching out and we hope we can launch this blog here quickly.” Whoa! They want me right away?! What a total self-confidence boost!! The best part: PT pays a stipend per 1000 views. So many blogs and media want people to write for free. PT’s stipend — if I blog at least monthly and achieve more than 1000 views — not only helps my incredibly stressful and awful financial situation, but makes me feel valued, my ideas validated. I could never have become a PT blogger on my own. All kudos to my publicist!

First things first. I had to gather up all the material for a profile, including a new profile picture, and send it directly to my assigned PT editor who then passed it on to the web team. Waiting for it to be set up was so hard! I feel like my brain injury recovery is just one waiting period after another. But unlike waiting to see or hear back from health care professionals, this wait was only a few days. While I waited, my publicist advised me on my first two posts. I whined then acquiesced at the idea of making my first post an intro: how I came to write my book and become a PT blogger. I chose an excerpt for my second post, following his guide on how to choose one, and drafted the two posts up so that once I received my login information, I could charge on and publish my first post.

Uh, not so fast. PT is very particular about posting. I not only had to select a title but also a subtitle for my profile. That was brain-wracking enough. But I have to do that for every single post I publish, too. Gulp. Writing a title is hard enough! I also have to choose an image. Luckily, I have thousands to choose from on my Flickr site. Unluckily, I have thousands! Next, I have to draft teaser text that will appear on the home page. This is seriously challenging my writing skills, I thought.

I discovered that my synopsis — teaser text — title and subtitle writing skills, have improved tremendously since the last time I had to write a synopsis, years and years ago. All this brain biofeedback seems to be improving my working-writing, things like summaries as opposed to books or essays, in addition to my cognition. Nice surprise!

And lastly, for every post, I have to choose topic(s). Not so simple since PT doesn’t have anything related to brain injury. No concussion. No traumatic brain injury. No stroke. No brain hemorrhage. I decided on Resilience and PTSD for my first post and ran them by my editor. He suggested trauma for future posts. That made sense since my brain injury was from trauma. PT has discussed adding concussion to their list of topics. I hope they add it soon! In the meantime, please check out my profile where you’ll find a list of my posts, books linked to Amazon, and online presences. And you can click here to read my first post.