I’m so excited to announce that my interview with David Byrd for American Café, Voice of America, is now up and live!
After he interviewed me about my experience and my book Concussion Is Brain Injury: Treating the Neurons and Me, he spoke to Dr. Lynda Thompson of the ADD Centre about me, the treatments, and the hope that my experience gives to people with brain injury — that there are real treatments out there that make it possible to recover! I’d forgotten how difficult it was for me to write until I heard her tell Byrd where my writing skill was at when I first arrived at her clinic. Although I want to forget how bad things were, sometimes it’s good to be reminded so as to realize how tremendously far I’ve come. Take a listen, it’s only 7.5 minutes!
. . . I was asked by online magazines to write articles for them (in progress); conducted a radio interview (yet to air); and . . .
*reluctantly awakes* *checks email* *opens 30th Annual Word Guild Shortlist email* *scroll* *scroll* Sigh. Didn’t make it. *scroll* *gasp* OMG! 😲 I made it!!! 😳😄😱😭 Is that my name, for sure, for sure? *stares hard* *brain refuses to process*#braininjury#concussionpic.twitter.com/KDYZDBryLq
I hope you will check them out, bookmark my page, and return to read my latest posts. And if you like my writing and brain injury advocacy, please consider supporting me through Patreon, the place for patrons like you!
My New York publicist for Concussion Is Brain Injury: Treating the Neurons and Me has been working hard to acquaint various media outlets with my book and persuade them to review it. Psychology Today was one of those media. But they decided against reviewing my book — sigh. Instead, on April 17th, they wrote my publicist to invite me to become a Psychology Today blogger! They ended their request with, “Thanks again for reaching out and we hope we can launch this blog here quickly.” Whoa! They want me right away?! What a total self-confidence boost!! The best part: PT pays a stipend per 1000 views. So many blogs and media want people to write for free. PT’s stipend — if I blog at least monthly and achieve more than 1000 views — not only helps my incredibly stressful and awful financial situation, but makes me feel valued, my ideas validated. I could never have become a PT blogger on my own. All kudos to my publicist!
I’m stoked to announce I’ve been invited to become a @PsychToday blogger! I’ll be publishing my first blog post for them later today. W00t! 😄
First things first. I had to gather up all the material for a profile, including a new profile picture, and send it directly to my assigned PT editor who then passed it on to the web team. Waiting for it to be set up was so hard! I feel like my brain injury recovery is just one waiting period after another. But unlike waiting to see or hear back from health care professionals, this wait was only a few days. While I waited, my publicist advised me on my first two posts. I whined then acquiesced at the idea of making my first post an intro: how I came to write my book and become a PT blogger. I chose an excerpt for my second post, following his guide on how to choose one, and drafted the two posts up so that once I received my login information, I could charge on and publish my first post.
Uh, not so fast. PT is very particular about posting. I not only had to select a title but also a subtitle for my profile. That was brain-wracking enough. But I have to do that for every single post I publish, too. Gulp. Writing a title is hard enough! I also have to choose an image. Luckily, I have thousands to choose from on my Flickr site. Unluckily, I have thousands! Next, I have to draft teaser text that will appear on the home page. This is seriously challenging my writing skills, I thought.
I discovered that my synopsis — teaser text — title and subtitle writing skills, have improved tremendously since the last time I had to write a synopsis, years and years ago. All this brain biofeedback seems to be improving my working-writing, things like summaries as opposed to books or essays, in addition to my cognition. Nice surprise!
And lastly, for every post, I have to choose topic(s). Not so simple since PT doesn’t have anything related to brain injury. No concussion. No traumatic brain injury. No stroke. No brain hemorrhage. I decided on Resilience and PTSD for my first post and ran them by my editor. He suggested trauma for future posts. That made sense since my brain injury was from trauma. PT has discussed adding concussion to their list of topics. I hope they add it soon! In the meantime, please check out my profile where you’ll find a list of my posts, books linked to Amazon, and online presences. And you can click here to read my first post.
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.
“Being involved in an accident can be very distressing for everyone involved and the recovery process doesn’t always end when the visible injuries have healed.”
Personal Truths is a UK website that documents real people’s journeys through personal injury and provides useful information for those who’ve been in accidents. Recently, they not only found my blog, but they also featured it in a post about six inspirational blogs that their readers “NEED to read”! Wow! My brain couldn’t compute this blessing that fell into my lap amidst all the dreck that rains down on me (really, could I have a week where blessings outnumber crap?! Too much to ask?). I quickly replied — didn’t want to miss this opportunity no matter how frozen my processing — and supplied them with the photograph they requested to go with the summary on my blog.
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!!
As Alex and Andi on CBC Olympic Morning were wrapping up with a replay of the team figure skating — and really, can one see that too many times (yeah, OK, maybe . . .) — Victoria Ahearn, writing for Canadian Press (CP), a news wire service, tweeted me that she was “doing a story on people staying up late/waking up early in the morning to watch the Olympics.” She asked: “You have time to chat today?”
Oh yeah! I did!!
The way CP works is it feeds articles to news organizations across Canada, some of which automatically run everything that comes over the wire from CP and others, like CBC, decide which ones to use and which ones to skip. It looks like many from local (like below) to CBC and the National Post picked it up. I wasn’t sure whether my interview would make it in, especially after hearing about the fan who’s sleeping in 10-minute blocks so as not to miss a single live moment! Whoa, I can’t meet that dedication. Quotes from that fan started off the article, but mine on live vs. taped-delay finished it up. Sweet!
Books don’t sell themselves. Unfortunately. You must market, publicize, convince people to write reviews for you — not rave about the book only to you. An up-to-date website also helps to sell yourself and your books. It ups your SEO on Google, a good thing as that’s how people find you. But an old-looking website plants doubt in potential readers’ minds.
So I’ve set myself a triple updating job: keep the blog pages that are an extension of Concussion Is Brain Injury updated with new info and ideas; blog regularly; and update the appearance and function of the entire site.
That last task I used to do yearly. Every year, I had to relearn what I’d done the previous year in the back end of my site: how to tweak the theme I used and how to read the HTML/CSS codes I’d copied and pasted to customize my site. Now the free — always and only use free is my motto — theme is obsolete, and I have to find a new one to customize. The problem is I feel like I can’t understand the back end anymore, it’s been years and years since I last updated (for reasons I touch on in Concussion Is Brain Injury). From my experience with SoloLearn, I know my programming knowledge is in my brain somewhere. I can relearn. But I haven’t retained what SoloLearn taught me well. Believe it or not, that is a step up. At one time I couldn’t have remembered my pre-injury programming knowledge at all, and whatever I had learnt would’ve vamoosed in minutes. So at least I can remember for a bit. It was hard to believe that though this past week as I found a new theme, tried to learn it, and all I felt was a massive wall between me and understanding.
I’m beginning this updating mountain climb with an easier site I manage. At first, the new theme was completely — I mean completely, absolutely, totally — incomprehensible to me. I’m used to clicking here, mousing there, to figure things out, kind of like how I play with my photos, trying out different looks until I find what I like. But all the options were, like, huh?‽!!! Thankfully the theme designers had made a helpful video; it just took awhile to find it.
I clicked here, played with settings there, tried and tried experimenting with almost every option to see what they would do to the site. But still the whole thing was murky. And I was seriously, painfully fatigued.
All of a sudden, I understood how their theme worked, what all the options did, how to “read” the back end. Phew.
But now I have to keep working on it, for I’ve only just begun with the basics of the site and after two days off, already began to forget how some of the options worked. I still have to relearn how to use the Events feature I installed years ago, figure out how to make some of the fonts look the way I want, and set up a gallery. And, oh yeah, why does the site title keep changing its look FFS??!!
Once I master the easier site, I’ll be set to work on my site.
If I take too many days to rest, which exhaustion probably will force me to, because with brain injury, rest is neverending, I’ll forget it all over again. Stab a fork in my eye if I have to take too much downtime and relearn it all. But right now, I’m pleased with how it’s looking and functioning . . . Except for that site title that seems to have acquired a gremlin.