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?

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.

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!

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.

Books

Voice of America Interview for Concussion Is Brain Injury

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Voice of America American Cafe David Byrd Interview 15 May 2018

I’m so excited to announce that my interview with David Byrd for American Café, Voice of America, is now up and live!

After he interviewed me about my experience and my book Concussion Is Brain Injury: Treating the Neurons and Me, he spoke to Dr. Lynda Thompson of the ADD Centre about me, the treatments, and the hope that my experience gives to people with brain injury — that there are real treatments out there that make it possible to recover! I’d forgotten how difficult it was for me to write until I heard her tell Byrd where my writing skill was at when I first arrived at her clinic. Although I want to forget how bad things were, sometimes it’s good to be reminded so as to realize how tremendously far I’ve come. Take a listen, it’s only 7.5 minutes!

Books

Moving On From Reading

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People walking away down PATH system.There’s a huge irony in my reading rehab journey: I thought long and hard about what it would take to restore reading after brain injury; I wrote about my theoretical program; I’ve done bits and pieces of that program; I am now receiving the bare minimum of help for reading.

My second and third posts on Psychology Today are about reading loss and restoration after brain injury because it’s the single biggest loss I’ve had of my core identity, because it’s been so very hard to get anyone seriously interested in helping me, and because both experiences are common in others, no matter their gender or race or cause of brain injury.

I wrote in my third post about lack of cognitive empathy for my reading loss. It’s not that people aren’t sympathetic or health care professionals haven’t tried some of this, some of that, it’s that they haven’t been able to put themselves in my shoes and gone, “ohhhh, this is bad, real bad, we really must make reading restoration central to your health care.”

My neurodoc verrryyy gradually over the last three years made a concerted effort to read with me most days out of the week, following a formula that worked — after six years of me begging him — yet still only when he recalled bits of the evolving formula, when he didn’t shunt it aside for “real therapy,” when he wasn’t welded to staying in his box of 20th century psychiatric medicine and trying to shove me again and again into a gendered 20th century DSM model of brain injury. He never really had cognitive empathy for my reading loss even though he’d agreed that, no matter what, he would find at least five minutes to get reading in and, when he’d followed that, he noticed himself that I did substantially better, emotionally and cognitively. Yet because he didn’t have cognitive empathy for my reading loss, he stopped doing that by 2018. He also never discussed with the rest of my health care team how to work together to recover my reading. And he was pretty blunt in early April that he wasn’t interested in helping me with my brain injury grief, which would include dealing with reading loss. I finally decided the emotional toll of having to continually remind and beg to stick to the reading rehab routine that worked and of his 20th century psychiatric thinking wasn’t worth it anymore. Unfortunately, this kind of approach to brain injury rooted in the last century is still the norm today within medical circles.

So I’m moving on. I put him on hiatus and am putting reading in the past where others have decreed through their actions it belongs. It’s really difficult for me to enforce my own reading rehab on myself; it’s one of the few cognitions that can’t be restored on one’s own. My mother reads with me every so often. That’ll have to be enough to maintain my current level unless God decides to answer prayer and bring me a miracle.

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.”

Personal

Figuring out Brain Injury Grief

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I had to figure out how to bring my temperature down and stabilize my thermoregulation; I had to, have to continue, to figure out how to rehab my reading; I had to figure out how to persist in relearning skills, doing life in a new way long after bean counters in hospitals and insurance decided I no longer needed outpatient and community care. Do I have to figure out how to grieve brain injury, too?

In all things, I began with standard medical care, with learning the medical system’s usual way of approaching relearning, living with brain injury. When that showed itself to be completely inadequate, I sought better care that actually treated. They taught me things, but they too went only so far. After that, and also when I failed to find any help whatsoever for some problems, I had to seek the answer within myself from painfully pulling out old neurophysiology and psychology knowledge, willing my brain to absorb new knowledge from reading, and putting it all together through writing.

But I never thought I’d have to do that for grief!

I thought eventually I’d find someone who got it, who knew how to guide me through grieving the death of myself because they’d learnt it from experts and they’d worked with other people with brain injury. I was wrong.

Brain injury has been around for eons. Loss of self has been a known effect for eons.

So why is there no help‽

This is like hell ten times over.

There’s no help because the psychiatric model labels it depression. The neurophysiological model focuses on healing the physical brain. The therapist model extols the virtues of discovering who you are now. Friends and family model get sick of hearing the confusion, the pain, the repeating what-the-fuck-is-going-on-help-me! cry.

Eighteen years, two months, and seventeen days, and I’ve not had one consistent stretch of grief work. And I’m not alone. No wonder after a couple of decades of seemingly doing “well,” people keel over. Grief doesn’t disappear into happy positivity that the experts and family want us to leap into on the day of our diagnosis. It lurks until the work of relearning, of learning a new life, of becoming used to the routines of daily living, is done and brain space opens up. Or a bad event will throw the entire system into shock and grief flows back up like a magma flood.

What do you want, my neurodoc asked. I wanted my grief to be respected as real and different from depression and from grieving another human being; to be honoured with consistent healing work. I guess I’ll have to do that alone too. The only way I can think how is through my writing.

Brain Power

Reading Rehab: Big Picture Begins to Return

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River in Kluane National Park between mountainsLast Monday brought a surprise — in the neverending river of reading rehab, I connected the elements in a chart in the book I was reading with my mother to the succeeding paragraphs. I could see automatically how they connected. Maybe this uptick in reading cognition happened because this is my fifth time reading this book — the second time reading it out loud with another person — but it’s probably also the reason I felt so nauseated last week. Any time I feel nausea and/or dizzy all the time, it’s usually because my brain is making those final neuronal connections (as I see it) to give me back what injury took and produce a sudden leap forward. I never know what the improvement will be until about a week later.

I can’t believe it’s in my reading!

I can’t believe it’s in the stubborn-no-I-won’t-see-the-big-picture area! To see automatically how one chapter flowed out of the previous, how sections tied in together on Monday was . . .

Whoa.

Previously it was either a conscious effort to see it or I just saw sections and chapters as silos, knowing they were connected but unable to see it. This deficit didn’t affect my recall. Instead, it created anxiety over the effort of reading, of perceiving “how does this all tie together‽”, the big picture of it all.

The big picture has always eluded me. I may sound like I see it when I recall what we’ve just read or recall the chapters read so far, in my reading work with my neurodoc, but what I see in my mind, how I understand the book is not as a whole unit, but rather as a series of silos or silos co-existing.

Or to put it another way, imagine building a little lego village. You place a brick on the flat green pad. Then another brick next to it. And another. Pretty soon you have a wall, then a house, then another building. And a tree. As you click in each lego piece, you see all of what you’re building and you can see it growing into a little village. That’s the big picture. Now imagine you can’t see the whole. You can only see part of the first building. Then that fades away as you see the tree you clicked in last. How can you see the village you created if all you can see are the south wall of the first house or the top of the tree or the roof of another building, in succession but not altogether?

Monday, those silos of views connected to each other. Awesome.

Unfortunately, being overwhelmed by events interferes with all my cognitions, especially new improvements like this one. So bit of a setback this week, but that should be temporary.

In a related area and in the weirdness department, that same Monday, I gained energy as I read out loud the last two paragraphs of the two pages we were reading. Gained? Gained‽ Reading makes me feel better but always fatigues me. How did I gain energy‽!!! Was that just a weird blip or a real improvement 18 years, two months, and five days after the crash that obliterated my novel reading like it was so much sand in the wind. I can’t recall how I felt after reading a book in my pre-injury life, it was so long ago now. I only recall disappearing into and becoming one with the world of a mystery novel and surfacing a couple of hours later, wondering where I was. Did I have more energy? Did I feel rested and re-energized afterward to go back to work? My mother tells me I was always full of energy. Hard to believe after almost two decades of unrelenting fatigue and eighteen years of having that reading in flow, reading to escape, reading to re-energize, taken from me. If this is the first spark that it might actually be returning, I know from past experience that it’s just a spark at this moment. Things like this work like a short circuit: old skill/ability sparks on, hope rises, improvement vanishes, hold on to hope, wait and wait, another spark, hold breath that it’ll stay, release as it doesn’t, another spark and one that lasts longer, and so it goes until at last the short circuit is a whole circuit once again.

But this weird 180 of my reading from injured ability to maybe my old normal is so tied in to the grief of my loss, I dare not hope. Yet there it beats like soft feathery wings deep inside me.

Brain Health

Let Me Eat Cake

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Slice of carrot cake

There are days when the only remedy is a slice of cake . . . maybe a whole cake. Well, OK, even in my lowest moments, I can’t eat that much!

It’s March Break when students get a week or two off from the hard mental work of school. It’s predictable and reliable, that time off. Once you hit adulthood and full-time work (contract, part-times pieced together, or old-fashioned kind), vacations need to be thought out, booked, dates negotiated with the boss and/or co-workers . . . unless you’re a health care professional, especially physician. Then no juggling, just decide, “I’m going to this conference, time to tack on a vacation.” And tell staff and patients or clients.

Or not.

I don’t know why it’s so difficult for my neurodoc to share this information weeks ahead instead of days ahead. Yeah, people with brain injury need notice, need enough time to absorb there will be a change in routine, enough time and reminders to remember to amend one’s schedule, enough time to be okay with the change. But the way I was raised, one just did these things: give people notice because it’s the polite and considerate thing to do. It’s socially mature.

But over the years, I learnt his out-of-town routine. And fed up this year with the way men manipulate women into nagging and begging for information to be shared, I just assumed it was the usual routine and rolled with it in my mind. Ha!

So I’m having cake and wondering when I get to take a vacation from my brain injury.