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.
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.”
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.
Brief vision update here. I don’t want to jinx it, but for the last couple of weeks, my far-distance and panoramic vision seem to have stabilized. Does this mean my brain has stopped trying to shut down the firehose of new visual information that the surgery turned on? Does this mean it has ceded the battle and is coming to terms with both eyes working together and feeding more efficient data to the visual cortex?
My depth perception is still being integrated. I’ve discovered that reciting to myself over and over “integrate” as I step down each step actually integrates my proprioception (sensory information from my feet) and perception (sensory information from my eyes) and makes stepping down and knowing where I am on the staircase much much easier. Huh. This week I got to the landing and knew it without having to stop and check my feet and feel unsteady until I did. W00t!
I’m slowly adapting to the new streetcars. Because of the TTC’s systemic bias, they have created door jambs that have yellow paint not at the outside edge but behind the black bumper. Only the accessible door has no black bumper; still, the slope down and gradual grey edge makes it difficult for my brain to perceive what is streetcar and what is pavement. And for some reason, it’s also more difficult to discern how high the step is when getting on. The old streetcars with their white-painted edges are easier to step up into, though it’s still more challenging than regular stairs . . . maybe because they’re steep??
Anyway, I bang my cane down on the surface I want to step on to, and that tells my brain where my foot goes.
The large windows and sloping floor (why oh why did the streetcar designers think sloping floors are safe on a moving vehicle‽) can induce nausea in anyone, I’ve learnt. I suggested to a friend with a perfectly healthy brain that she sit in the accessible car where the floor is flat. Nausea solved for her. But for me, it’s the large moving landscape visible outside the enormous windows. I’m assuming this moving-scenery-induced nausea/dizzy will ease over time, and I’m seated anyway, so I won’t fall.
I was starting to get quite stressed over the thought that my new vision would reverse and my brain would revert to “default.” I’m heartened that the brain biofeedback, and perhaps the increased light levels on my audiovisual entrainment device to stimulate the retina, are enforcing the new vision.
When the Executive Director (ED) of BIST invited me to attend a meeting with the CNIB, I said yes. But I had no idea what I was saying yes to, other than getting to talk about vision and brain injury. I also didn’t really pay attention to how many people I’d be talking to. So when I spied through the door long tables in a large squarish pattern filled with people, my eyes grew large. Melissa, the ED, asked if I’d be OK. Uh, yeah. She and the CNIB had kindly set back the meeting so I wouldn’t have to get there at the crack of the working day. I’ve begun getting more stringent with sleep time since I’ve learnt Alzheimer’s is related to lack of sleep. I also can no longer tolerate dragging myself to places every week because I had to wake up early enough to get out on time. Brain injury screws up actual time asleep. The longer in bed, the better chance of getting something on the right side of six hours. Anywho.
We were given seats in the middle front to face the group, and I could see all of them equally well. This might have been the first time where I didn’t think about where to sit so as to accommodate missing peripheral vision — because I’m much more used to having it. Sweet.
Melissa had asked me to go first, and she’d end our presentation with info on BIST (Brain Injury Society of Toronto). I hadn’t planned anything. No clue what to speak on. Didn’t faze me because I learnt a long time ago that brain injury had given me the gift of speaking off the cuff and doing a pretty good job of it. I usually do write up a few notes on virtual cards, then don’t look at them at all because I can’t read and speak at the same time. But between the Olympics and stressors, I didn’t even think about it. As it turned out, my subconscious had been dying to speak to a captive audience. My vision story, the things I learned, needing advocacy and better design and maintenance of Toronto’s accessibility features like Accessible Pedestrian Signals, the anxiety of people injured in a car crash when walking near traffic, all flowed out in one long uninterrupted stream. Even feeling my energy seeping down and out my toes didn’t stop the flow of words. So weird.
The organizer began the presentation with having everyone introduce themselves including the two disembodied voices over the conference phone. It was so rapid, my brain was like, uhhh, I’m supposed to keep up with that? So before I began, I asked who was there, meaning what do people do. There were three groups. As I recall, orientation mobility trainers, low vision specialists (one of whom had a quiet guide dog in training, we all had to resist petting him), independent living including technology (oh, hmmm, mustn’t forget to talk on that), and early intervention for children. I couldn’t speak to the latter, but it gave me somewhere to start since I’d been half-blind since early childhood, and I could talk about how that was my identity and how brain injury began to restore my vision and how getting back my vision was initially not so hot.
They let me talk for a long time. My waning energy told me of passing time, but no one seemed inclined to stop my flow. They asked a few questions, which I was able to answer.
I felt valued, normal, like I had information and experience to share that was legitimate and valued. Maybe this sounds a bit strange to you, but after brain injury, this sort of thing becomes rare to the point that you wonder what’s the point of all the hell, of all the learning to get out of hell, if the only one to benefit is you. And you’re also in this strange place where people treat you with respect, listen kindly, yet don’t include you. And people who know me never call or email me when someone they love is concussed or has a stroke, as if my knowledge and experience is, as if as a person with brain injury I don’t know what I’m talking about because . . . injury.
One thing that really surprised me is that I had remembered to talk about technology and how health care workers need to know more than basics and more than clients know about devices and apps. For example, let’s not think of smartphone as just a phone and thing to text on, but a device that has apps that facilitate our work. For me, that’s writing, and I have three apps for that. I described them as concrete examples help better than simply abstract statements.
After my talk, one person asked my advice about technology. I can’t recall the specific question, but I watched her take notes as I spoke and was blown away. Usually, I get nods and zero interest. Rarely, see note taking and so many notes too throughout my talk and the following Q&A.
Most of the people there were women. No surprise as men aren’t as prevalent in health care professions outside of physician as they ought to be.
As time goes on and as I care less and less about people liking me, I’m becoming more vocal in calling standard medical care of brain injury as medical malpractice. Even so, it’s one thing to say that to someone I know, it’s another to say that to a group of health care professionals. I was surprised to hear that come out of my mouth, but I don’t regret it. During the Healing the Brain conference, Dr. Norman Doidge expressed frustration with physicians and health care professionals eschewing neuroplastic treatments as if these kind of individualized treatments lacked evidence and were some sort of scam. I felt validated hearing him express that; yet he hasn’t suffered as a result of such attitudes.
I’m permanently injured because neurorehab doesn’t include it and because they misleadingly call compensating strategies “cognitive therapy.” Oh please. And the government won’t fund community care for people with brain injury. They keep cutting and cutting (and paying their administrators more and more). I don’t have the social support to compensate for lack of community care — and I’m not alone in that. I also didn’t have anyone working with me in my brain injury treatment homework; I still to this day have to rely on my health care professionals to keep my brain active so that I can benefit from the treatments I continue to receive. No wonder my neurodoc opines that “few would do what you do.” It’s a demoralizing, shitload of work, and I’ve gotten so tired after eighteen years of this, I’ve quit a lot of it myself.
So going to the CNIB, seeing people genuinely interested in what I have to say, asking me questions and writing down my answers was what my soul needed.
My brain needed coffee after! With a shot of chocolate, of course!!