I’m not really sure what to write. I’ve had a month of events coming at me, new writing projects and blogs popping into my inbox, keeping me going, prodding me into action, sweetening my life with purpose. . . Suddenly I’m having to initiate work on my own again. And I’m clueless.
Work ebbs and flows like swirls of icing on a chocolate cupcake. It entices to dip in a finger and taste its fragrant purpose. But blocks freeze motion, fray purpose; the icing remains untouched and slowly begins to harden on its surface.
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 Todayare 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.
The BIST Community Fair and Expressive Art Show was in a new venue. Off of Yonge near Brain Injury Society of Toronto’s offices. People found it easier than last year so the place was buzzing as they checked out all the resources like Sunnybrook Family Navigation, 211, Cota, Free Geeks, and of course BIST. Quite a few of us BIST members had our artwork displayed, and I had a table where I sold and autographed copies of my Concussion Is Brain Injury books. It was a blast!
But I was sadly reminded how much the medical system fails people with brain injury.
I could tell when the person approaching me had had a brain injury. Look into their eyes and you’ll see it.
I sometimes feel — or more accurately, have been made to feel by some physician ABI experts and kith and kin — that it’s just me who struggles. Others do fine. My neurodoc insists how well his other patients do socially after following his advice. I find it difficult to believe, assuming they had social skills before their brain injury, because treating those parts of the neural networks involved in social interaction actually makes it easier cognitively and emotionally. You can have learnt all the skills in the world but you can’t use them well or at all when the involved networks are off and unhealed. It’s rather frustrating to know what to do but unable to do it.
Meeting fellow persons with brain injury reminded me: I am not alone. I hope I conveyed to them that they’re not crazy, either.
One said her doctors opined that they didn’t have a brain injury, only brain surgeries. Well, when you see them clutching every flyer in an effort to find answers, and they talk about short-term memory loss, then they have a brain injury. Just because a scalpel created the injury doesn’t make it a non-injury.
Another told me that they had concussion only in some situations. Huh? Apparently, their health care people didn’t believe they had a brain injury — for some reason the docs couldn’t see it — yet they are filled with fear — the kind of fear we get when the world comes at you like a barrelling train, friends aren’t willing to slow down and accommodate, and you keep missing chunks of conversation or what’s happening around you. Their health care professionals must be stupid. Or willfully blind. Lazy definitely. If you don’t acknowledge such obvious difficulties and blame the person — like saying I have low EQ as one did me while not acknowledging people refusing to accommodate my fatigue and slow processing etc created a situation that lead to everyone being upset. Refusing to see the obvious cognitive struggle in a person’s eyes means the health care professional doesn’t have to up their game, learn about the brain and brain injury, and treat it properly.
Another visitor to my table was stuck inside their head, unable to cope with the sensory informational overload. They had family around them, a mother, a sister, willing to take them around to every table and every artist, willing to learn about what’s available to make their life and brain better. This is rare. A family being there in person, helping on a practical level and supporting emotionally by ensuring their injured loved one wasn’t hunting for answers alone. The others all were alone, even when it was obvious they shouldn’t be, that they wouldn’t remember anything from the fair or be able to learn from all the flyers. The flyers, the brochures, my bookmarks would become a cacophony of paper lying unfound where they would be dumped in the relief of being back home, too fatigued to put the papers in a visible place.
The other amazing thing about this small family: they wanted two copies of my book — one for the injured member, one for the sister to read. Respect! Unfortunately, I had only one left by then. All people with brain injury should have family like that.
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.
It’s a gusty day, clouds billowing up on each other, stretching apart to reveal dark patches of blue sky and let the sunlight through. Once again this week, I’m standing on the sidewalk, against the wind, staring down down down the street, all the way to the third traffic light in the distance. Red red red green. Or is that the fourth traffic light I can see to?
How is this happening? Seeing more depthlike depth in distance objects was weird. And wonderful. Seeing the whole of a computer display in one go was oh so nice. But now with another new improvement, I’m boggling. How is this possible?
My brain is adapting. A bit unsteady at sudden moments. Back to staring and taking in buildings, people, signs, colour nuances on the Royal York hotel stones, details in bricks, Union Station’s warmth and richness of colour, before I can feel my brain release and I can continue to walk.
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.
Watching 1 Mile To You. High school boy, runner. Loses his entire team in a bus accident. Girlfriend and friend, too. Runs to remember them. The faster he runs, the more he sees them. Remembers them. He doesn’t want to forget them.
His new coach asks:
What do you want? Your heart. The most important muscle in your body. Never rests. It remembers everything. I need your mind to know it. Your heart to know it.
He can look at pictures of his dead friend. Dead girlfriend. Text them. Watch video messages, see their smiles. And he remembers them.
But how do you grieve yourself? How do you grieve the reading slaughtered in the injury? How do you talk about lost reading like you talk about a dead girlfriend? Girlfriends who are gone don’t return distorted, damaged, done in. How do you grieve something you can’t look at, touch, watch, talk to, is a distorted, damaged, unfamiliar version of itself inside yourself? Not outside yourself. How do you grieve when you don’t want to remember yourself reading when it hurts so much? Yet the memory comes, and you remember you always saw yourself so long into the future holding a book, absorbed, silently slipping the pages over, one by one, living, breathing inside the story. You bang and bang on the doors of people to help you. To go back to that time when reading was just there and the future was certain. But no one can help though they try inside their own way.
It’s not coming back. You’re not coming back.
And then the expert calls it depression. Not grief.
Last 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 . . .
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.
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.
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.