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!!
It didn’t take me long to get into the Olympic spirit, the trialling spirit. I say trialling because the stories — what some eschew, just get to the events already — is what makes the Olympics meaningful. Imagine working for four years towards one race watched by billions, training to improve, trying to avoid injury, fundraising to keep the training and competing going, to pay for equipment and coaches, and crashing out of the gate. Or being injured in the training or qualifying run. It’s rather like brain injury as a young adult — you’re working hard to establish your career, you’re building up networks, taking night courses to expand your expertise, you’re client-raising to keep your fledgling consulting business going, or, like me, spending hours after work on the phone or meeting people to interview them for a complicated non-fiction book. Then on the eve of an achievement you’ve pursuing for years on an inconsequential trip, you crash. Game over.
Seeing how the athletes handle adversity is inspiring to me. Usually. This year, it took me a couple of days to stifle the voice pointing out the oodles of people around them, pulling for them, tangibly supporting them, and most of all their coach(es). Every single athlete has a coach to guide them, goad them, hold them up when an injury fills them with fear. People with brain injury may look like they have that, but over the long run, not so much. The spouse tells them to try harder, willfully refusing to educate themselves on what it takes just to pull back the bedsheets and put painful feet on the screaming floor. The parent tells them that they gave themselves brain injury. Friends find reasons not to pick up the phone or meet them where the person is physically, cognitively, emotionally, and socially. Siblings tell them to get on with their life.
The coach knows more than the athlete in some ways so that they can teach, guide, be by their side and encourage through every struggle. They learn. The seek out new methods, new tech to help their athlete attain higher, faster, stronger. They don’t stop after a year, saying why aren’t you top. They keep at it for as long as it takes. Years. Families stick by, even move, spends tens of thousands over decades.
But people with brain injury, facing the same sort of journey because of the stale medical standard of care, must attain their Olympic podium in a year. It’s only possible if receive treatment within 24 hours or days. Ironically, I think only athletes get that. Some of these athletes who recover from concussion or stroke live in centres where I know there are treatment facilities for what I receive. If I had those treatments in January 2000, I would be back to my career, would not have lost my networks, would be fully independent again and able to earn an income. I have no doubt. Even without support.
But that’s not my reality. I live with the long-term consequences of the failure of medicine, of health care professionals working in silos and refusing to bridge the divides and learn from each other. I live with the knowledge I could have a coach, but the people who could have been never saw the rewards of that so walked away. And the person I have now resists; so it’s been like pulling a deadweight to beg, nag, demand, meltdown over and over to get incrementally more what I need to restore some semblance of (book) reading. Just reading though. So much fun being your own advocate. Not.
So for two weeks I escape into the Olympics, stifle my grief, and admire the accomplishments and the people who surround and lift up the athletes to attain their highest potential. And if they crash, they rally round and do it all over again, if that’s the athlete’s goal.
Every cauldron lighting is anticipation and awe. Kim skated ballet high up, lit ice crystals, and like the rings of light that rose to the sky during #OpeningCeremony rings aflame rose to the milky white ceramic cauldron and lit it. Beat boys in metal red celebrated. #Olympics
Being forced to wear hijab while cross-country skiing is uncomfortable (you get WARM skiing) but a skirt too‽ 😳That guarantees she can never reach her best. Misogynists sure are afraid of women. Stupid ppl. Determined, courageous woman. https://t.co/5d1EgMBnDA#Iran#Olympics
Only first full day and already my body is balking at these early early morning #Olympics starts. Doesn't help slope style last night seemed to have a delayed start, tried to stay up even longer then had to cave to sleep.
Ski jumps have evolved so much since 1988, don’t look like have anything in common. Wind holding the competitor. 4m/s upper limit, a strong headwind apparently. It’s 5 blowing up the jump. Those flags are flapping. He must be frigid waiting! Blanket time! #Olympics
I need a nap! The Canadians didn’t let up the entire game, speeding and shooting relentlessly against the Russians. Stamina! No wonder Russian goalie needed replacing in 3rd. 5-0 Canada 🇨🇦! W00t!! #Olympics#CBCOlympics#IceHockey#WomensHockey
“Boom! Boom. Boom. Boom. Shots fired from Tyler Nicholson.” He took off and landed switch. Something different. But OMG he was 7th, out of final. McMorris unimpressed with score. #BigAir#Olympics#CBCOlympics
What an incredible athlete Humphries is. Equipment strangely bleeding time does not stop her from reaching the podium. Bronze for 🇨🇦!!! And who’d a thunk her brakeman George wld medal in #Olympics winter games‽ Awesome Canucks!! And I have to SO to 🇬🇧 #CBCOlympics#bobsleigh
I’ve had a broken arm. I can’t believe Canadian Rosalind Groenewoud can ski halfpipe with one! 😲 I guess when you’ve had plethora of injuries, not gonna let a break stop Olympic dream. Can see effect of it in her (thankfully) clean runs tho. #Olympics#CBCOlympics
You gotta hand it to Nuis’s mental strength. False starts, can’t make a mistake on 2nd start, which naturally makes you a tad slower. But still believes he can get that double gold. 🇨🇦 Boucher last to do it in 1984 on outdoor ice. And 🇳🇱 Nuis does it! #Olympics#CBCOlympics
As I begin writing this, I’m also scrolling through Twitter #patientchat; one person tweets that it would be nice if the physician discussed how care fits into the patient’s life and goals.
It would be!
Up until 2013, for me, my life goal was getting back to my life. Oh, I knew I was writing differently, I probably couldn’t return to computer programming, and writing was the only thing I could realistically do with my fatigue and propensity to suddenly not be able to work for long stretches. But somewhere in me, I believed I could return to “normal.” Return to working several hours a day. Return to normal socializing. Return to earning an income. Return to never having to attend another fucking health care appointment.
Then life and PTSD gave me a rude wakeup call. I had to refocus on health care appointments and also religiously treat my injured neurons at home just so that I could get through the day. That went on for years until a confluence of treatments in 2017 finally slayed the chaos in my brain. Ruminations like a hamster in a steroidal wheel slowed then almost faded away.
I resisted then finally acquiesced to the knowledge that my PTSD was not going to be treated in any curative way (some day I’ll write about why people with complex PTSD aren’t getting better and life is a daily struggle to keep functional and nights a nightly hell of tossing sleep). Then this past Christmas, I tired of treating my brain injury too.
Yeah, okay, I’m still attending my brain biofeedback and I continue reading rehab with my neurodoc and I use my home devices just enough to keep pain of every kind at bay and my body ticking along as best it can. But I’m not doing any homework. I’m not thinking anymore about how to work on this part of my injury or that part. Any thoughts on brain injury and treatments are to keep my book blog pages updated. And I’m not working at all on treating my PTSD. It is what it is.
I want to get back to normal life, what I now define as: a day not consumed by health care.
But what do I want to do? Write novels for myself. (No one is buying them and I’m not made of money to spend on taking them to the final published book form so once I write the first draft, what’s the point of revising and editing.) Philosophy of Mind requires me to read. A lot. And really hard stuff. Well, that’s not going to happen. I didn’t get the professional help when it would have made a difference. (Health care professionals are so focused on what they do and what the average is for this function or that that they miss the rare opportunities to radically help their clients.) On the other hand I learnt of the video courses on the Great Courses Plus app, which I’m wending my way through very very slowly. I enjoy photography but can’t seem to dedicate time to it and haven’t been able to in years. I can design and create websites, though it’s on/off, sucks me dry of any energy, and oftentimes feels like there’s a thick concrete wall between me and understanding the back end of a website where all the coding takes place. I can help people with brain injury, like I did last November with NaNoWriMo and like I’m trying to do with Concussion Is Brain Injury, as long as I have energy and don’t have to do it for longer than a month at a time. There are other things I’d like to do. Cooking would also be nice; to make myself yummy nutritious meals without the energy suckage would be awesome.
I return to the question: what are my priorities? I don’t know.
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.