Brain Health

BIST ABI Acceptance Series, Week Two, A Review

Posted on

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

Cold Feet, Ice Creeping Upwards

Posted on

As regular readers may know, like too many people with brain injury, I have thermoregulation issues. That means I’ve run too hot for over a decade. (I write about possible reasons why in my book Concussion Is Brain Injury.) But I haven’t talked about my cold feet and the strange phenomenon of being far too hot in my torso and head and far too cold in my feet and legs. My acupuncturist used to rebalance the heat so I was properly warm head to toe. The treatment never lasted too long, and back I’d go to being hot and cold in the same body.

I didn’t do much for my cold feet because it was the heat that posed the danger to me and sent me to the ER back in 2007. But the heat has cooled down year after year to closer to normal levels with the neuroplastic treatments I’ve been receiving. So I’ve been noticing more the cold in my feet and legs. For the last little while, the cold has worsened in my feet; nightly it begins to creep up my calves to my knees. I feel like I’m slowly turning into ice from the bottom up. It’s always way worse at night (at the opposite end of the night as the heat was).

The laser therapy clinic I go to has recently retained a new doctor, and he decided we should rule out blocked or spastic arteries being the cause. I heard nothing then suddenly I was given 24-hours notice to go to the vascular lab at the hospital I have traumatic memories of. Unbelievably, the lab was on the same floor as the behavioural cardiologist I went to for a few visits in one of those utterly futile attempts to do something about my heart (hence, one source of grief). I also didn’t know how I was going to navigate this hospital, which is normally a zoo, with my new vision. My brain still demands help remapping all first-time-since-the-surgery venues. Sigh. And indoor spaces with people moving in all different directions and sound bouncing loudly off surfaces makes it harder than outdoor spaces.

But no matter, I asked for help at the info desk. Getting a brain injury means you’d better get used to asking for help over and over and expecting you’ll have to negotiate for it, too, almost every time and forging into protracted negotiation that’ll come with a price when people say no. But I digress.

I received help and even better, the place was like a morgue. I have no idea how I lucked out! It made navigating the space infinitely easier. The weird thing is that the place seemed a lot smaller than before my eye surgery. It’s like having true binocular vision has shrunk spaces and even devices like my iPhone in my perception.

The vascular lab takes your blood pressure super quick in your arms, legs, ankles. An ultrasound wand is faster than regular blood pressure equipment! Then the technician begins to sound your arteries with ultrasound to produce colour pictures of your blood flow with the grey landscape of your arteries and surrounding tissues. Blue for 24 cm/s; red for -24 cm/s. Every artery she found, she’d listen to the blood flow. Hearing the strong beating whoosh whoosh of my blood pumping through my abdominal aorta, arteries extending into my thighs, arteries behind my knees, was pretty sweet. The strength lessened on my ankles and the arteries in my feet were very difficult to find. Ultrasound needs fat to bounce off to create a picture of the arteries, and feet don’t have fat up top (or at least mine don’t). No beat. Ten percent of the population apparently has no discernible pulse in their feet. Welcome to the ten, Shireen! Even the beat from a couple of points on my ankles sounded like it came from far off and was high pitched unlike the arteries at the other end of my legs. Their beat was deep, like a bass or baritone.

What did this all mean? I have “absolutely gorgeous arteries.” My arteries aren’t the reason for the cold in my feet and creeping up my legs.

Since the low-intensity light therapy (laser therapy) over the bottom part of the spine warms up my feet and keeps the ice from creeping up at night, the nerves coming out of the spine there were probably affected. The lap belt would’ve cinched after the first impact in the car crash. It would’ve stayed cinched during the next two impacts, pressing into my body. Peachy. Cranial nerves stretched, reducing my saliva, increasing risk of cavities sans me knowing because no one thought to look nor monitor. And looks like same with spinal nerves where the lap belt was and no one thought to look nor go over the possible sequelae and what I should do about them, like wear socks to bed. I’d never had to before so didn’t think about it until I heard of someone doing that a couple years ago.

And now today, I have a light therapy home unit I can use to keep my feet warmer and a clinic to go to where they can help me deal with these perplexing issues. Brain injury doesn’t arrive alone. It comes with friends who need treatment, too.

Health

Nineteenth Brain Injury Anniversary

Posted on

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

Posted on

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

Last Reading Session with Lindamood-Bell

Posted on

It’s over! Hard to believe that it was only four months ago, I was starting to learn how to visualize and verbalize and on my way to regaining my reading comprehension. And now it’s over. I plunged in with Lindamood-Bell on the basis of their decades of experience, their thorough reading assessment, my brain Clinic Director’s endorsement. Even though they were fully confident they could give me back my reading, I was uncertain. After eighteen years of not much progress, how could I achieve reading books again in only two months?

Well, I did it. I ended the original 81 hours back in September and had five refresher sessions one week then two weeks apart. I’m still reading The Lions of Al-Rassan (on page 183 as of today, more than a third of the way through it), and I’m rereading the course material from the Philosophy of Mind course I took six years ago and did well in on the strength of my writing, my short-term memory, my intensive use of the iPad for notes and repeated calling up of word definitions (no vocabulary retention), audiovisual entrainment, and serious napping. Even so, I never acquired vocabulary. I never understood some concepts like Descartes’ extension. And I didn’t retain much of it. But now I’m reading it with comprehension. I’m acquiring vocabulary. The only thing I need to is read and work the visualizing and verbalizing process.

It was sad to say good-bye, but today, I was ready. I’ll still be checking in as checking in helps the student to retain and prevent drifting away from the process. I have to say that because I’ve been intensively writing a novel for NaNoWriMo, I have been drifting away. And some stressful events have seriously interfered with my memory of what I’d read. Having the last of the extra five free refresher sessions today gave them an opportunity to pull me back in and for me to ask for tips.

Read every day. And even if it’s only five minutes during this intensive writing period, read daily to keep the connection to creating imagery. Work the whole process if can read for 10 minutes.

Read daily.

Funny, before my brain injury, no one ever had to convince me to read daily. Not reading a book was a chore. After my brain injury, reading a book became a slog of quicksand-sucking proportion. Now reading daily is difficult yet returning me to the joy of books.

Personal

I Voted

Posted on

For eighteen years, since my brain injury, I’ve not voted on my own on Election Day. I’ve had to beg for rides, used special ballots (that was a weird experience), forced to decide who to vote for ahead of time and before I was ready because my poll is far enough away to not be accessible. I couldn’t even find it for the longest time because of my navigational and memory challenges.

Accessibility isn’t just a wheelchair ramp. It’s also how close it is. How easy to find.

When I came of voting age, we could vote in our neighbour’s house. Now we have to schlep to schools and churches and apartment buildings. People with disabilities don’t want to ask for help to vote. They want to be able to do it on their own, when they want. Inclusive design means ensuring independence.

But this shrinking of polls reflects a change in how much we take our democracy for granted. We complain about our politicians but fewer and fewer want to contribute to making the electoral process possible. And fewer and fewer want to vote. City election turnouts are particularly perplexing because wherever you are, whatever stage in life, the decisions of politicians and the city affect you. When you don’t vote and you stay silent when new Premier Doug Ford undermines the election, you have no say in your own life.

You have no say in your commute.

You have no say in ensuring your sewer doesn’t back up.

You have no say when community cops disappear from the streets.

You have no say in whether your road is repaved or not.

You have no say in creating a better park near you.

You have no say in affording where you live.

And you particularly have no say in having the city comply with accessibility laws and ensuring inclusive design in all developments and infrastructure.

When you vote, you learn who your representative is, which means when you have a problem, you know who to reach out to. And you will have a problem only a city politician can fix because calls to 311 may not be enough. Constituency work is the heart of good City Councillors.

Did you vote?

Personal

I Voted

Posted on

For eighteen years, since my brain injury, I’ve not voted on my own on Election Day. I’ve had to beg for rides, used special ballots (that was a weird experience), forced to decide who to vote for ahead of time and before I was ready because my poll is far enough away to not be accessible. I couldn’t even find it for the longest time because of my navigational and memory challenges.

Accessibility isn’t just a wheelchair ramp. It’s also how close it is. How easy to find.

When I came of voting age, we could vote in our neighbour’s house. Now we have to schlep to schools and churches and apartment buildings. People with disabilities don’t want to ask for help to vote. They want to be able to do it on their own, when they want. Inclusive design means ensuring independence.

But this shrinking of polls reflects a change in how much we take our democracy for granted. We complain about our politicians but fewer and fewer want to contribute to making the electoral process possible. And fewer and fewer want to vote. City election turnouts are particularly perplexing because wherever you are, whatever stage in life, the decisions of politicians and the city affect you. When you don’t vote and you stay silent when new Premier Doug Ford undermines the election, you have no say in your own life.

You have no say in your commute.

You have no say in ensuring your sewer doesn’t back up.

You have no say when community cops disappear from the streets.

You have no say in whether your road is repaved or not.

You have no say in creating a better park near you.

You have no say in affording where you live.

And you particularly have no say in having the city comply with accessibility laws and ensuring inclusive design in all developments and infrastructure.

When you vote, you learn who your representative is, which means when you have a problem, you know who to reach out to. And you will have a problem only a city politician can fix because calls to 311 may not be enough. Constituency work is the heart of good City Councillors.

Did you vote?

Personal

Small Treats Combat Social Isolation

Posted on

Marshmallow kitten in a white chocolate foam in a chocolate cupI sit in a noisy café, sipping fresh, black coffee, eating a cream-filled pastry, writing in my iPhone. My brain pines for peace. My soul needs the treat, the semblance of normal life. My brain will recover; I’m going to be tired by the time I get home regardless of where I go, anyway.

They say that these little kinds of social connections, the brief encounter with a store cashier, the discussion of what coffee to drink with the barista, the fast-disappearing engagement with one’s TTC driver, alleviates loneliness. It isn’t only the big social gatherings that prevent loneliness. In fact, I would say that the big social gatherings in the absence of regular phone calls, text chats, coffee dates, email hellos, only accentuate the downward change in social status, the loss of normal relationships, and the intense isolation brain injury brings.

At the end of a very bad year, I turned my back on the fiction of big social gatherings and scrimping for the future and turned towards spending on the present to gain these many small moments of smiles and hellos with strangers who became known to me and me to them. Even though they don’t know my name.

Brain Power

Reading Re-Evaluation Results After 81 Hours Visualizing and Verbalizing Instruction with Lindamood-Bell

Posted on

Today was re-evaluation results day! It seems like another lifetime ago yet only yesterday that I received my initial reading assessment results from the Minnesota Lindamood-Bell centre. I’ve completed eighty-one hours of visualizing and verbalizing instruction with Lindamood-Bell’s Double Bay, Australia centre (which because of the time zone difference allowed me to do it two hours per night, five nights per week). I had my re-evaluation this past Sunday, Monday, and Tuesday nights. The time was broken up because of my fatigue — I don’t have a lot of stamina — and because they wanted to use new-to-me stories in addition to the same ones I had been tested on the first time around for the reading comprehension section.

Like before, all the results were normed to my age and gender. And those tests that haven’t been normed in awhile, were used for diagnostic purposes.

Re-Evaluation Results

What I wrote about my June results is in italics; my re-evaluation results underneath each point:

  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.
    1. My reading rate has not increased. I remain in the 16th percentile.
  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.
    1. My foundations remain solid. I can still sound out multi-syllabic words, as they’ve heard and seen during my sessions while reading complex material like philosophy of mind.
    2. Although a couple of my scores dropped in this category, they remained in the above grade 12 level. The word attack — decoding nonsense words, which is about sounding words out — also has only 26 possible points. So going from 26 out of 26 last time to missing 2 of the 26 this time equals a big drop in percentile; if there had been more points, the drop would not have been as large. The symbol to sound one (things like sound out “ou” or “oa”), I like to think dropped because Canadian accent versus Australian accent. Heh. But to be honest, I didn’t put a lot of effort into that one test because in the real world, I can pronounce words okay. It’s my reading comprehension, reading rate, and amount of text I can read that are the issue.
  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.
    1. Well! I’m so chuffed. My Peabody Picture Vocabulary Test result shot up.
    2. There was actually a greater than 10-point discrepancy between a regular vocabulary test and my initial Picture Vocabulary test result.
    3. I went from 82nd percentile to 95th! That’s more like it!
    4. This test measures receptive vocabulary, that is, vocabulary that’s spoken to me. The improvement reflected my improved ability to image words.
  4. My accuracy in reading words is very high.
    1. This remained the same.
  5. Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
    1. This has not changed.
    2. My reading rate remains in the 16th percentile.
    3. My accuracy remains very high in the 95th percentile.
    4. Fluency remains in the 63rd percentile. The only way for me to increase it is to read faster.
  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.

In relation to points 6 and 7: big change! Happy Snoopy dance!!

Concept Imagery

Lindamood-Bell’s visualizing and verbalizing instruction is aimed at improving one’s ability to conceive a word, sentence, or idea as a whole in image form. Being able to conceive a word or sentence or paragraph or idea as an image both improves comprehension and recall. My re-evaluation objectively measured whether I’d learnt how to do this and improved in these two areas. In the words of the Double Bay Associate Director, I “knocked it out of the park.”

Sketch of visualizing and verbalizing instructionAs I’ve detailed in previous posts, Lindamood-Bell Australia began teaching me how to visualize with a single word. We moved on pretty quickly to a single sentence. Once I learnt what is meant by picturing a word then picturing a sentence, I had to learn how to verbalize it. I didn’t really understand “visualizing and verbalizing” until about August even though I was doing it.

It isn’t enough to create a mental image in your mind, that is visualize an entire sentence then a whole paragraph then an entire page; you need to be able to describe that image and also summarize the sentence or paragraph or page in words  clearly — that is, verbalize it to your clinician.

I didn’t get to the chapters/articles level as shown in this diagram by the Minnesota Director. But I did reach the Page level and soon after during the Application stage, the Page by Page level.

So what did that mean?

The Big Result: Reading Comprehension and Recall

In the Gray Oral Reading Test, Form A, which is one of the tests used for diagnostic purposes, I improved hugely. This test measures straight recall. You read a paragraph. They take the text away, and you have to answer four open-ended questions posed to you by the assessor. I had inconsistent and kind of depressing results the first time. This time — 100% all around, well, except for one pesky grade level. But I improved there too! At the grade 6 level, I improved from 75% to 100. Eighth grade I remained at 100%. Tenth grade, I improved from 88% to 100%. Grade 12 I went from 50% to 88%. College level, I went from 75% to 100%. And adult level I remained at 100%.

Gray Oral Reading Test, Form A Pre and Re-evaluation results

I’d noticed my recall had shot up. I was able to not only remember but have confidence in what I was remembering because it felt solid in my memory banks. I remembered what I read — whether pages from the novel The Lions of Al-Rassan or sections in Philosophy of Mind text — because I could see the images in my head. For the first time since my brain injury, I was also able to build up the big picture of what I was reading — this requires recall. If you can’t recall what you read previously, you can’t build up the big picture. But you also need comprehension.

The Gray Oral Reading Tests 4, Forms A/B comprise stories you read out loud then they take the story away and put in front of you five multiple-choice questions. You read along with them as they read out loud the first question and its four possible answers. After you choose A, B, C, or D, they read the next question, and so on. This time I recognized within those questions, concepts such as main idea, higher-order thinking questions, questions about feeling and expression, things I still struggle with but are way, way, WAY, better than back in June. They saw I was stressing over reading stories I recognized from my original assessment, wanting to do better, still not happy at how back in June I’d struggled over answering some of the multiple-choice questions. I was definitely not struggling as much. But was that a practice effect or comprehension? It felt like comprehension to me. They decided to test me again using new-to-me stories without telling me why they were giving me additional stories to read; they scored me on those stories. I was less stressed as I read the new stories, the questions, the multiple choices, and answered the questions. I actually scored better on the new ones than on the ones I knew from the June assessment! That’s what stress does to you!!

As I mentioned earlier, my reading Rate results from this test remained abysmally slow: 16th percentile. Accuracy remained at 95th percentile. Fluency remained at 63rd percentile. But — drum roll –my Comprehension score went from 63rd percentile to 84th! This is actually the top percentile for adults. The best part: I scored 70 out of 70. *Pumping fists*

Gray Oral Reading Tests 4, Forms A/B

They don’t test for volume of language, that is, how much text I can read in a sitting. But we know experientially that I’ve been increasing week after week the volume I’m reading. We began with a sentence. I’m now up to four pages, reading them Page by Page. My next goal is a chapter. I don’t know how I’ll get there, though. I’ll be working on goals next week.

Main Idea

Reading rate is the same. Volume and Comprehension are up. My reading rate hasn’t changed, but I’m understanding much better what I read and I’m reading much more text with comprehension and good recall.

It is possible to restore reading comprehension after brain injury! No strategies needed anymore!! (Well, except for covering off the text . . . for now.)

I haven’t tested my long-term recall in the real world. But every time I summarize what I’ve read so far in the novel, starting from the Prologue, I remember it. The Philosophy of Mind is not as solid with just me reading it, probably because it takes more mental energy and effort. I fatigue quicker with it; fatigue plus huge effort equals not being as disciplined in creating images. I also am not good at creating higher-order thinking questions (HOTs). I’m going to go back to my course modules and use those questions as my HOTs. But I think this day calls for cake!!