You never know when you enter a new year what the crash anniversary will be like. Sometimes you think you’ll skate through it, then the day dawns and wham: you might as well have stayed in bed.
This year, things went south early on in 2018, which to me, boded ill for today. Last night wasn’t great either. Fears picked at my nerve endings, and worries wormed through my axons. I finally fell asleep and awoke too early. I zapped my brain with what I used to call the light and sound show — audiovisual entrainment using SMR/Beta frequencies to paradoxically create calming brainwaves in my concussed brain — and turned to Twitter for welcome distraction. I stumbled on an article about a new way to objectively take the brain’s vital signs, sort of like how we measure the pulse and blood pressure to take the body’s vital signs. I emailed my brain trainer and the ADD Centre the article and asked if they’d heard of this Canadian research from out west. Their quick reply was enough to push me up and out of bed. In our world of being too busy to reply, we’ve forgotten how life-giving a quick reply, even the briefest of ones, are. Then Canada Post after subjecting me from late December to early January to the most exhausting experience of waiting for a package I’ve ever endured, suddenly turned up with my second one. I was expecting it to be shipped today, not arrive today! Whoa. The rest of the day unfolded like that, threading me from one unexpected good moment to another.
It’s the end of the day as I write this, contemplating a poster I made for myself in 2007 from the picture of the rose above. My (first) stint at brain biofeedback was ending. I was being discharged into an unknown new reality with both trepidation and faith that my hard work would return me to my dream. And now I’ve arrived at a new ending, the end of writing and publishing Concussion Is Brain Injury: Treating the Neurons and Me, the final version of my memoir; the end of believing that my PTSD can be treated; the end of focusing on my health care. Unless God answers prayer, I turn my face away from the idea I always held in front of me: that my brain injury can be healed fully, that I will avoid the heightened risk of Alzheimer’s. I’m eighteen years post-injury and am not remotely close to normal health. The poem I wrote for myself over a decade ago speaks to me now into whatever time I have left.
Sun on the rose, Kisses us awake, To the possibility of hope.
Dry air. Deep cold that penetrates into the tiniest lung cells. Early mornings interrupting fractured sleep. Brain goes pfft, I’m not doing this, regulating the nose, the throat, the heart, and lungs. Let’s go back to bed.
But bed wasn’t doing me good. I had to keep my head elevated to keep the drips out of my throat and descending into my lungs to create bad news.
I dragged myself out to brain biofeedback where I found to my happy surprise that gamma enhancement made my throat stop wanting to cough hack scratch. Phew.
I was also using low-intensity light treatment on my neck and upper back to calm the twitchiness in my throat and lungs. I didn’t know if it would work — I was kind of like how I am on the computer: let’s see what this will do . . .?
It helped, like the gamma did. But the weather continues its assault, and I’m not resting properly. Soooo . . . Just don’t talk a lot!
Storify, bought out by Adobe, shut down operations, flinging my Storify and everyone else’s into the virtual trash bin. Fortunately, the internet has helpful coders who supplement the pathetic FAQ Adobe created, and I’ve recreated the Storify here below as an archive.
I attended the Healing The Brain conference on Wednesday, May 24, 2017 as a brain injury survivor and live tweeted it, both to share with the world and my way of taking notes. I came away pumped with a clearer way of seeing the brain and a renewed purpose for revising my book Concussion Is Brain Injury. Doidge spoke eloquently on why neuroplasticity can be harnessed to permanently treat brain injuries and Thompson on one effective way to do so. Brain maps prove people with brain injury/concussion have real problems and are not malingering! Read the tweets for all the deets!
talk talk talk — my original blog — has been looking sad and dated for way too long. I put updating it in my endless ToDo list. Publishing Concussion Is Brain Injury: Treating the Neurons and Me moved it from being written in some task app into my head, needling me regularly until finally Christmas arrived with NO appointments, NO TTC to sap the living energy from me. I got it done. Took longer than expected. With brain injury, doesn’t it always? I used one of Blogger’s new themes, then customized it, sticking with a dark theme because I liked it, and it helps to differentiate my political blog from this one. And I fiddled around with one of my Toronto waterfront photos for my header image — even mulling over a quacking duck shot — until I decided I liked the sardonic look of the gulls. They’re just soooo Toronto and political looking.
Yes, folks, talk talk talk is looking pretty good now. The gulls are even impressed. Sort of. The only problem is that with losing so many years of regularly working on my websites to focus on my brain injury recovery, I lost my familiarity with HTML. I only ever copied and pasted code I needed that I found on the web, anyway, but trying to figure out how to change the full post page to a white background with black text defeated me. The HTML code looked like complete gibberish. Worse, I couldn’t find what helpful techies in their helpful posts said to find in order to add or replace code. I felt like my computer-understanding brain had turned into Swiss cheese. Blogger’s themes are more visually accessible than they used to be, so I’m going to have to rely on that . . . for now. It’s not that easy trying to make one’s blog or website accessible, but as I improve, I’m hoping to be able to do that here as well as over on talk talk talk.
The nice thing about refreshing a blog’s look is that it makes you want to blog again. It’s been sporadic on talk talk talk and barely weekly here because I had to make the hard decision five, uh, six (gulp) years ago to putting my energy once again towards treating my injured neurons and recovering brain function. I hadn’t truly heard the years ticking by until I logged into my CafePress site to update its widget on talk talk talk and saw my last login date: November 2011. That was a depressing stunner. I have some choices to make.
I was given Fish as the next step up in my using graphic novels as part of my reading rehab. A traumatic brain injury — a concussion type — had stolen my ability to read books. I remained literate, just couldn’t read. It’s a too-common problem unaddressed by health care professionals who think the band-aid solution is just fine. It’s not. In discussions with a psychology professor, we thought graphic novels may help my ability to see, conceptualize, and follow a plot. Take the text out and maybe my brain can process ideas. The first one worked well, so on to this one!
Uh, well . . .
Fish was bizarre!
I began each weekly reading session, recalling out loud what I’d read so far. I read four, five, or six pages, recalling each page out loud at the end of it. I tried to motivate myself to handwrite a summary at some point during the week. And I struggled to understand what the heck was happening; then as I began to understand the what, I continued to flail at understanding why and what it all meant. It revealed to me (because health care people taking care of my brain aren’t working with me on this, so it’s just me myself and I figuring this whole thing out) that I have trouble building up the picture of a story not because it’s presented in text but because my brain can’t do it, period. This also means I can’t understand concepts that have depth to them. And Fish ain’t a superficial, silly story about a fish with legs that ends up in a city! Each scene means something. The sequence of the scenes is probably important. Being able to not only recall but also to tie the scenes and dream sequences together, to be able to remember a scene from early on and tie it to something much further on in the book, is necessary to “see” the big picture and understand a concept being built up.
But as I worked at reading four pages at a time, then eventually six pages — always reading to the edge of my fatigue — little bits of what the author meant by the dream sequence of Calvary and other scenes began to populate the big blank in my mind, like filling in a jigsaw puzzle. Mid-October, it was still difficult for me to see the point of the story, the story arc, and the plot. But after a break during most of November while I wrote a novel, I returned to it in November’s last weekend and surprised myself by how much I recalled and how I suddenly understood concepts I hadn’t before. Boggled!
Being able to understand the theme somewhat abruptly changed the book in my mind from being a chore I had to slog through to being slightly curious to see what would happen to Fish next.
The following weekend, as I reread the previous four pages I’d read then read the last five pages of the book, much more of that jigsaw puzzle filled in. I still don’t have a solid feeling of the book. It’s like seeing the author’s ideas through blackened glass with pieces cleared here and there, but it’s enough for me to feel pretty good about my reading progress and to sense the author was making some rather pointed comments.
As for the book . . . it’s strange and disturbing. I’m not a fan of that kind of drawing style. I admit that I could have benefitted from discussing it with someone, in the way that using a new word in conversation three times helps one understand and remember the word. Those kinds of discussions as I progressed through the book may have made me appreciate Fish’s story more. But, again, to be honest, the drawing style kind of repelled me. Only as I’ve digested the book, gotten away from seeing the pictures so that the character of Fish emerges stronger, do I feel sorry for Fish while admiring how he reveals the people around him.
The main character in my new novel has no voice. She’s not me, yet, too, I am muted, most recently, in the relationship with my neurodoc. It’s come to an impasse. He is clinging on with rigid ferocity to the DSM and, though he’s interested in the new ideas of neuroplasticity, he continues to adhere to the familiar-to-him chemical model of the brain, while I demand that he sees my injury as an injury, meaning my issues come out of physiological damage and as the neurons heal, what he calls moods and traits will and do suddenly disappear or flip, something the DSM and chemical models don’t account for.
He’s not alone.
Psychiatry has devolved into prescribing chemicals. Take this and see me in six weeks. If one chemical formula doesn’t work, try another or add another. In the brittle brains of medical specialists, the brain has become a chemical bath that can be manipulated by ingesting or injecting the right solid or liquid chemistry. Forward thinkers aka health policy experts and bureaucratic innovators further maneuvere psychiatrists out of that old fussy model of talking and into dispensing increasingly sophisticated variations of the same type of chemicals. Community-minded forward thinkers look to generics as being exactly the same as brand names: cures for cheaper, thus more responsible to the community, except psychiatric medicines don’t cure. They just mask and symptom manage.
Accordingly, brain injury medical specialists and mental health forward thinkers have evolved treatment beyond the intimate therapeutic alliance between physician and patient to infrequent expert consults and time-limited overview, never mind that a therapeutic alliance is the best buttress against “noncompliance.” When you’re heard and you feel cared for and you’re connected to your physician, especially your psychiatrist, you’re more likely to have your concerns heard, to be given therapy and medicine that’s better suited to your needs, and thus to comply.
But in the forward thinking brittleness of evidence-based modern psychiatry, relationships are obsolete. (That reflects our society; and we wonder why North America is in turmoil.) A relationship that respects and hears the patient, that values their insight and uses it to diagnose and treat, that works with non-medical health professionals, seems to be an anomaly. Add in the lifelong demands of brain injury that’s not static over time, where communication is challenging yet the only type acceptable by the brittle progressive psychiatrists is verbal, and you have an impasse when a patient like me objects to being unheard, devalued, and sexist and culturally stereotyped through the presbyopic lens of the DSM.
If I’d had oodles of money, back in 2009, I would have sought out a psychologist familiar with brain injury. I had been told back in 2001 — and discovered for myself — that you really need a mental health professional who knows and understands brain injury in order to receive good, effective, and understanding therapy to manage the injury and its social, psychological, and economic consequences.
I would now add: needs to be someone who is willing to learn and adopt the neuroplastic model of the brain, to learn how brain injury affects women worse than men, and how gender inequality affects their social and economic lives as well as taking into account cultural differences.
Progressive men who feel proud of how they empower women and grant them equality don’t react too well to women who’ve known all their lives that they’re equal under God and don’t need to be granted it by a man, who come in expecting to have a say in their diagnosis and therapy, even when unable to communicate in the traditional way.
Unfortunately I didn’t have money flowing out of my coffers to afford a psychologist. In Ontario’s version of Canadian universal health care, the government funds only psychiatrists. And so that’s who I had to look for. The University of Toronto has hundreds, almost a thousand, psychiatrists affiliated with their Faculty of Medicine. Of those a handful work in neuropsychiatry, maybe a few understand brain injury, and hardly any work with people with brain injury in the way they need: weekly talk therapy using a team approach with health care professionals who actively treat the broken neurons. The psychiatrist ought to provide the emotional therapy and the others the physiological treatments. Some psychiatrists are joining their psychology colleagues in moving from the DSM and chemical bath model to the neuroplastic model of actually permanently healing broken people. Some so that they can work better as a member of a team; some so that they can actually treat their patients both emotionally and physiologically. I don’t know who would pay when a psychiatrist uses brain biofeedback, for example, as part of their therapy sessions. Our forward thinking bureaucrats and politicians probably ensure it isn’t taxpayer-paid health care. And I don’t think many or any of these psychiatrists are focusing on people with brain injury.
But I bet you no one is approaching reading rehab in the way my neurodoc and I are doing it (even though I became so exhausted emotionally from begging and begging for help that when he finally assented, I could no longer do the work on my own and I’ve become mute in asking for the fullness of what I need). So somehow, though he shot our therapeutic alliance to hell with his rigid clawed grip on the inappropriate-for-brain-injury DSM, he’s committed to going out of his way to help me with regaining my reading. I think that’s a metaphor for my post-brain injury life: every heavily fought-for improvement has come at a price.
Winter light is not the same as summer sunlight. You’d think after practicing walking — seeing, perceiving with both eyes and feet together, learning where I am in space — during strong and long summer sunlight hours, I’d have no trouble in the winter. Nope.
It isn’t just the snow.
The sunlight is sharp, throwing long rays through polarized sunglasses. Bare trees cast patterns of shadow and blazing light in a repeating rhythm as you walk. No matter the hour, the low sun sends photons into your eyes instead of down to the top of your head. And white, gleaming snow reflects it back up.
My brain remembers how my scarred eye used to shut and, in its diabolical plan to return my vision to what it was used to, tries to convince my eye it still doesn’t like the light. I have to fight to perceive that its light tolerance has improved, except when looking extremely sideways to the left. Even when back indoors, my brain is like, hey, it didn’t like the light so let’s shut it against inside light too! Grrr. It doesn’t help my good eye is sensitive to the light as well. (Yes, before my brain injury and eye surgery, I’d walk familiar routes with eyes shut on bright winter days.)
My CNIB guy suggested I get the sunglasses with the top and side panels. That way sun rays can’t sneak around the frame edges. Old people glasses, I think. But then he’s way younger than me and his pair not only has the panels but also sit over his glasses. Then I noticed the baby boomer generation growing older means seeing others my age wearing them too and looking not old, looking chic. But where do you get them?
After the amazing HRV numbers a couple of weeks ago, they tanked the following week. Sigh. That’s how brain injury improvement goes, I thought. And then I began getting short of breath in the way that tells me my heart ain’t too happy, which my hypothalamus fix had made better way back when. Oh. Yeah. I’d stopped doing the CES Sleep in the evening portion of my hypothalamus fix. Sigh.
I’d skipped it one night because I was so damn tired from noveling. Novel writing is fun, rewarding but challenging and exhausting. The more tired I get, the more I need to be vigilant in using all parts of my hypothalamus fix: sub-delta audiovisual entrainment session in the evening and CES Sleep first thing in the morning and at some point at night.
I had a little talk with myself and restarted the CES Sleep at night (I hadn’t stopped using the sub-delta AVE session or CES Sleep in the morning). That shortness of breath went, and I could breathe easier again. And last week, my HRV began crawling up again while my heart rate dropped back into the 80s (from the high 90s — a number that once would have been cause for celebration is now too high — that’s what brain injury treatment is all about — returning heart and brain to normal functioning!).
I want to add here that I think the reason why my heart rate and HRV are much, much better is because of the combination of my hypothalamus fix, gamma brainwave enhancement training, and the low intensity light treatment for my neck that includes the back of my head where the cerebellum is located. I went to “laser therapy” for my below-the-head injuries, but in the last few months, I’ve realized how much it’s helped me with my brain injury, how key it’s been in improving the brain’s control of my heart. I wrote about some of that in my concussion book. But because I finished writing it before I fully understood all this and am continuing to learn about laser therapy’s effects on concussion, I didn’t put it in the book. That’s why I created blog pages as extensions of Concussion Is Brain Injury — to update it! I will be updating my related blog pages with more info on laser therapy (see the relevant URLs in Concussion Is Brain Injury: Treating the Neurons and Me)!
Last week’s biofeedback also resolved a puzzle for me. The sailboat screen has the top sailboat sailing from yellow box to yellow box with a thin line connecting the boxes above the sailboat and below the waves it sails on.
So, I see this line as yellow. But after my eye surgery, I saw it as pink. Then my brain began to fight the influx of new visual data to return my vision to pre-brain injury and surgery, and I got confused as to the line’s colour. Was it pink or yellow?
We use this sailboat screen as the third neurofeedback training for gamma enhancement and again as the third one for inhibiting 16-20 Hz and enhancing SMR (12-15 Hz). Last week, I saw without a doubt during the gamma neurofeedback the line was yellow. Then it began to morph. Was that pink appearing??? During the 16-20 Hz inhibit neurofeedback, it was absolutely without a doubt PINK!
The line is pink.
Or is it?
The eye surgery allowed me to see fine details and colours in a way I hadn’t before. And since it, my cognitions involved in language, memory, and engaging with the world have improved a lot. Maybe I’d noticed the pink before but not enough to remember or mention to my brain trainer.
Turns out she hadn’t noticed the line colour changing before but saw it as pink. When we investigated closely, the answer was pretty simple, really. Click the computer mouse on the box to change that sailboat’s parameters, and the line turns pink to show which sailboat you’re changing. Doesn’t work too well with the pink box because the line stays pink!
All these years of using and being trained with it, never noticed before. Oy!
My ophthalmologist told me I have to keep improving the vision in my scarred eye to retain what the surgery gave me else the brain will win this battle. That means practice eye tracking. I’m thinking though maybe I should also up the light intensity during my AVE sessions (animal studies showed light stimulation similar to my AVE sessions regenerated retinas). And also to adhere to walking on streets about 1.5 hours after brain biofeedback when my vision strengthens again so as to use and cement in those networks so that my brain can lose this battle and win at seeing better. It would help to use a neck brace to force my head to sit straight and force using binocular vision but that wouldn’t be good for my neck muscles.
At least I’ve gotten better enough since the shock of 2013 to be able to think about my brain injury issues and deal with them and not resent or feel despairing that my health care professionals don’t collaborate (because my neurodoc wouldn’t know how if it smacked him on the head — his idea of collaboration is to tell others what to think and say they’re wrong when they disagree with him — well, except in the area he doesn’t consider himself an expert in, so that’s going better…anywho). Some don’t have the time, others don’t have the desire to think about and discuss these things with me as they evolve, only occasionally and only within their bailiwick when I grow desperate enough to force discussion. Then I put together what each tells me, add my own thoughts, write about it to elucidate it all to myself, implement, and hope to hell it’ll get better.
I still don’t know why any health care professional, especially my neurodoc and all other medical doctors treating brain injury, think someone with a BRAIN injury should be searching on their own actual treatments, directing their own care, and is even remotely capable of it. The part of you that recognizes, analyses, remembers, and carries out solutions is broken FFS! Sigh.
Last year, after eye surgery, my iPhone display looked enormous. These days, it looks teeny weeny. Amazing how adaptation changes perception. I no longer get dizzy moving my eyes across a wide screen. My brain is used to the sharper-looking text and more depth in the screen colours. My panoramic vision isn’t solid yet, but I’m used to seeing my iPhone display left to right, top to bottom, in one go. No more bits missing like before the eye surgery.
I still very occasionally get double vision, partly because my brain is still fighting to return to my pre-surgery default and discard the new binocular information. But brain biofeedback at PZ (top middle back) to inhibit 16-20 Hz, the thinking brainwaves, seems to be helping me win that fight.
(They call the excessive 16-20 Hz “high-beta spindling.”)
Slowly, panoramic vision outside on the streets and in parks is solidifying – one marker of that is being able to cross side streets without having to consciously narrate every step like I have had to since the eye surgery. Now after brain training I can see the traffic on both peripheries of my vision and process it in real time.
My proprioception is improving again; I’m able to distinguish myself in space with full up-down side-to-side awareness, which means I’m not returning to my old default with bits missing in that awareness. (I’ve just realized I don’t keep bumping into door jambs like I used to!) The first week of November I was able to discern the bottom step of the TTC stairs from the landing peripherally (and for the second week through my feet too) while looking ahead at a fixed point and walking down slowly and carefully.
This is huge!
Being able to go down the visually inaccessible steps on the TTC is a lot safer when one can see the low contrasts and feel the differences. It’s a lot of work and fatiguing trying to navigate the bloody TTC when not able-bodied, able-eyed, able-brained. Have I mentioned I hate it?!
Let’s think about more positive things — like my heart! This week was another in a series of OM Effing G!! Did you seeeee that?!!! As I mentioned before, the goal back in 2012 was to raise my HRV (the measure of how well my heart syncs with breathing) from the basement to a modest 10 and to lower my heart rate from freaky 130 to double digits. Also, to get rid of the scary-ass rises to 170 and drops to 30-50 beats per minute. It’s been a slow slog. Low-intensity light therapy (concussion protocol) where the lights are over my cerebellum definitely began to move things along in the right direction. But now–
My low frequency HRV got to 8.57!!!!!
8.57 uV for low frequency heart rate variability (HRV) during HRV training — basically deep breathing — is stupendous enough but to get 8.24 during gamma brainwave training and again have LF higher than sympathetic nervous system activity (VLF) is WOW!!
LF wasn’t as high during PZ training to inhibit 16-20 but look at that — 5.36 during the first neurofeedback screen! Sweet.
Reducing my 16-20 Hz brainwaves is not only cementing my improved vision, it’s also been working on my trauma-related round-and-round thoughts that whirl up grief, distress, hurt into an ever-intensifying tornado. I didn’t mention the emotion effects to anyone because we were focused on my vision and I wasn’t sure if it was for real, but recently I’ve become sure. My thoughts drop out of the whirling and into clear thinking. Clear thinking is the antithesis of trauma and flashbacks. Clear thinking settles emotions. Relief. Even if it’s only for a few hours or days.
But how is reducing high-beta spindling helping my HRV too?
I came across an article that said the cerebellum is involved in emotional control. We already know it’s tied into the heart via control of the autonomic nervous system. Soooo, using logic — if the cerebellum is involved in emotions and so is the area around PZ, then they must network. And then flow from the emotional control part of the cerebellum into the heart control. Brain injury and healing of injury is like exploring the brain.