Diversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.
During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.
All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.
Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.
Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.
And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.
So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?
No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?
Diversity Our Strength — that’s Toronto’s motto — and the words people on the progressive side of the ledger espouse and people on the conservative side support, although progressives mayn’t think so.
During the cricket season of brain injury awareness month this June, I have to ask: who is included in the diversity tent? CBC Radio 1 Metro Morning, the show that boasts how it reflects Toronto to newcomers and long-timers alike has been single-mindedly uninterested in interviewing anyone from any brain injury association about this month, about the challenges of navigating life and the city with a brain injury, and the sheer cussed-mindedness of the medical system that refuses to restore people’s brains, opting for the “right balance of rest” and strategies instead. Worse, Metro Morning is on our public broadcaster, who one would think would include every kind of voice imaginable on their shows — from morning shows to news shows like The Current to topical and lifestyle shows. But nope.
All but one morning shows in Toronto — television and radio — seemed to yawn when the press releases about this awareness month went by. Yes, let’s talk about concussions and hockey or football, when some big star writes a book or is injured, but talking about regular folk, car crashes, falls, PTSD from the cruel indifference towards and the navel-gazing abandonment of people with brain injury? Nah.
Millions are affected in Canada. Every Torontonian probably knows someone who has had a concussion or life-altering brain injury. Still, booorrrrring seems be the almost universal response.
Only one morning television show was right there on day one interviewing the Executive Director of the Brain Injury Society of Toronto and a member who had painted a powerful mask representing his brain injury experience. That was Breakfast Television. I guess, despite Rogers gobbling up Citytv, it’s still the only true voice of diversity in Toronto — like when it first launched, it still honours and includes the most sidelined voices.
And on the radio, it was a night-time show on a conservative talk radio station that hosted the pair and broadcasted their voices to Toronto.
So who really believes in Toronto’s motto? The hip, progressive media or the ones right there in the thick of the city, noticing and broadcasting to the public the voices no one wants to hear?
No wonder both the TTC and the city of Toronto have made cognitive accessibility worse under the noses of the Ontario Human Rights Commission and the provincial AODA (accessibility) law. They know no one capable to speaking loudly cares enough to stop them and force them to enact services, policies, infrastructure, purchases that are inclusive of all. So I’ll just be over here in my little corner shouting awareness and knowledge into the void because what else can one do?
I wrote last time about my reading evaluation. This post is on my results. When you have a brain injury and rehab tells you that you can’t read anymore, you assume that they’ve done a thorough assessment and analysis of your reading cognition.
You’d assume wrong.
Reaction
In 2005, five years after I was told I wasn’t reading the ubiquitous mass paperback in my hand, I had a qEEG done, which told me the neurophysiological basis for why I had so much difficulty reading. The first week of June 2018, I underwent three hours of testing over two days that assessed my auditory, visual, and language foundations of reading; my fluency; my comprehension; and my concept imagery.
Huh? Yeah, I’m still learning these too. They match with my experience, but they introduce concepts that I haven’t heard of before or only knew about from a different perspective. I learnt more about where my reading difficulties lie.
My very first thought was: why did I not have these tests done during rehab in 2000? Why did the medical system not assess all my cognitions with full, appropriate qEEGs and these kinds of reading, writing, and math tests?
If I had been properly assessed, not just given a neuropsychological test people with high intelligence can ace, injury or no injury, I would have had a complete picture and been given a precise scientific and medical explanation of why I couldn’t read anymore, not just a general statement of you can’t read.
I also don’t even know how to process the fact that when I asked my neuropsychiatrist for help with reading that the reading expert he consulted pointed to the aphasia website and didn’t tell him that I should have all these tests done, the ones I’ve just undergone. It’s been bad enough I had to wait twelve years for a reading “expert” advice, but to have not known about these tests for a further six years because the medical and “reading research” community are so intellectually lazy is beyond egregious. I’m pissed. And upset. And filled with hope that finally I’ll get my book time back.
I’m still processing my results.
Results
It’s difficult to explain what one is only just starting to grasp. Lindamood-Bell who conducted the evaluation, normed all results to my age and gender.
My reading rate is too slow. I’m in the 16th percentile. That means 84 percent of women my age read faster than me. I believe this rate is about double what it was in 2001. Wow! Some progress!! sarcasm
My foundations are solid. These are the ability to hear phonemes, the sound parts that make up words. The ability to recognize and pronounce high-frequency words. The ability to figure out an unknown word within the context of known words.
I rely on my vast knowledge bank and familiarity with language to prop up my comprehension. When I cannot see a word but only hear it and I have to pick out an illustration that best represents the word, I cannot rely on my ability to decode a word from its roots to figure out what it means. And so I don’t do so well. Based on results from standard vocabulary tests, I drop about ten percentile points, maybe a bit more, when given the same vocabulary test when heard, not seen, and using pictures instead of words to “define” the word spoken to me.
My accuracy in reading words is very high.
Fluency is rate plus accuracy. So my fluency is not at the level that my reading foundations indicate it should be. (Slow reader.)
When I can rely on my knowledge bank and ability to decode words, my comprehension is good. When I read new or lengthy material even text at grade six level, where I can’t rely on my knowledge of content and language, my comprehension drops a lot.
Concept imagery is the ability to conceive a word, sentence, or idea as a whole in a kind of picture. I don’t have it. It’s sort of, uh, depressing . . . more than that . . . grievous and devastating to see one rated as having a mental age of 14.5 or 13.5 years in these tests after eighteen years of rehab, active treatments, and passive home treatments. On the other hand, they confirm I’m not imagining my reading problems. I have real difficulty despite the fact that I’m “articulate” and can read words no problem.
As I understand how Lindamood-Bell conceives of reading, reading comprises decoding and comprehension. Decoding is done in the reading foundations aspect of reading. There are three parts to reading foundation: auditory, visual, and language.
“. . . thinking that reading is decoding a word but reading is being able to comprehend.” Nanci Bell
Auditory
The ability to hear phonemes, the sound parts that make up words.
Visual
The ability to recognize and pronounce high-frequency words. The ability to spell high-frequency words, that is, words that are used often in everyday reading. And the ability to image symbols, that is, letters or letter combinations.
Language
Vocabulary. And the ability to figure out an unknown word within the context of known words.
Encompassing these three foundations of reading is comprehension.
“If there’s weak comprehension, … frequently teachers and parents don’t really know perhaps there’s weak comprehension. . . . If it’s really severe could be labelled hyperlexia there’s a gap between ability to read words and ability to comprehend. Or if it’s weak enough, it can fall into the label of autism.” Nanci Bell
Comprehension
Lindamood-Bell uses Dual Coding Theory to explain how what we decode while reading — either text or listening to the words — is turned into comprehension by our brains. In dual coding theory, the symbols — words on text or words heard by the ears — the auditory, visual, and language parts of reading — are turned into non-verbal concepts that we can picture. A painting represents a thousand words and all. (Wikipedia notes it was a Canadian who posited this theory. Why is it then Americans, not the Canadian rehab centre I went to, that knows about and uses this theory to rehab reading?!!!!)
As part of that theory, they posit that concept imagery is how we understand what we’re reading. When we read or listen, we create a picture in our mind of what we’re seeing or hearing.
Nanci Bell, co-founder of Lindamood-Bell, explains the comprehension and concept imagery side of reading in this video below. Note that what we often think of as reading issues, eg, dyslexia, occurs on the decoding side of the ledger. The comprehension side isn’t usually talked about. It usually doesn’t even have labels like the decoding side does. I personally don’t think labels are always useful, but in our current milieu where everything is labelled, a label gives credibility. I think that’s why when people with brain injury say they have trouble reading yet can read words and use some or a lot of their vocabulary, health care providers, family, and friends don’t believe us. But as Bell says, vocabulary is not comprehension.
Now comes the tough part.
Restoring Book Reading
Lindamood-Bell said: “we can restore your book reading.”
Pause.
“What’s so tough about that, Shireen?” you might ask.
This is like where I describe in my book how I met clinicians in 2005 who knew what I wanted — to heal my brain — and said they would help me do that and could. It’s so hard to describe in a blog post what it’s like to be neglected medically, your angst and desires dismissed, and told to accept diminished functionality for years and years and then be told you can be helped significantly — and then you find out the help was available at the time of your injury; it’s just that the people entrusted with your care didn’t know about it or “believe” in it and your loved ones never searched for you.
Once again, I’m being told the unbelievable, that what I’ve wanted for years is in fact doable. It feels untrue. I asked:
“When you say I’ll be able to read a book like I used to (before my brain injury), do you mean a book at the level of an Agatha Christie? A PD James? Neuroscience article? And/or philosophy of mind textbook?”
They answered:
“In creating your recommendations for instruction, the goal I had in mind was your ability to read and process literature at the level of your potential, and at the level that would support research and continued learning for your writing. Especially with the full recommendation of 120 hours, I picture your ability to access all of the examples you provided in your original question. Our instruction may start at a lower level, but over the daily and weekly sessions, you’ll see an increase in the amount of language (text) you are processing as well as the complexity.”
Basically it would look like an ascending ladder of difficulty.
They continued: “Since our vision for instruction will include increasing the volume of information you are processing, our goal is to decrease your fatigue, by systematically and consistently reinforcing independence with visualization for increasing lengths of language. Just like any foundational skill (ex: learning a new language, learning a new instrument) practice and continuous exercising of the skill, makes it more automatic. Instruction will stimulate and strengthen this process for you, but practice outside of sessions and beyond instruction, will also be key. You may still need to take breaks, but I anticipate the length of breaks and the frequency of breaks will diminish as you, on a daily basis, start reteaching your brain this visualization process.”
I’ve consulted with some of my health care team. They believe I will benefit, that I need this hope. There is some skepticism that reading books like I used to is achievable; but no matter what, given all the brain work I’ve done, how my brain is now used to training, and how I do the work given me, I will benefit. My reading will improve. Dr. Lynda Thompson at the ADD Centre, who referred me for evaluation, was impressed with the time they gave me answering my questions and liked that they would show the objective learning curve not rely on subjective feelings and measure the gains.
I’m not sure how I’d be able to handle it if I didn’t achieve reading like I used to, though. That’s why I’ll need all the support I can get from my neurodoc. We’re patching things up; I’ve enforced pursuing my goals, and only my goals.
The normal intensity of instruction is four hours per day, Monday to Friday, for four to six weeks. Because of my fatigue, we’ll cut that down to two hours per day, five days a week, for eight to twelve weeks. It seems that I would need the whole three months and would have to practice daily on top of instruction as well as continue daily practice after instruction ends. Whew. That’s a heck of a commitment to work! I worried that the whole thing would be a moot point if I didn’t find a way to pay for it. I need help since the cost is way, way beyond my means. So I’m borrowing. What else is new.
OHIP really should be paying for this. This is what cognitive therapy ought to encompass when acquired brain injury clinics talk about what they do as cognitive therapy. It should also include brain biofeedback and audiovisual entrainment and long-term talk therapy. But first we need to get the medical system to assess cognitive functioning and brain injury properly. And to get anyone working with people with brain injury to take their reading problems seriously. We live in a knowledge economy after all — if we can’t read volumes of information, we can’t work.
Concept imagery underlies comprehension. Comprehension not based on having an adequate vocabulary nor ability to hear phonemes. Nanci Bell: “What they struggle with is the concept or the whole. And if you don’t have the whole, you can’t do higher order thinking skills such as main idea.” They call it in the U.K. aphantasia, the inability to visualize. Higher order thinking: From what you pictured— not what you think — what comes next in this story?
Lindamood-Bell trains to the client’s potential not what falls into the average range. This is significant. Brain injury rehab is about working to the average of what they’ve done since the 20th century, not for what is needed for independence, satisfying functionality, and most importantly, the person’s potential.
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Sketches courtesy of Dana Kernik-Theisen, Center Director, Lindamood-Bell Learning Processes, Edina, Minnesota, who generously gave of her time to explain my results, recommendations, and reading theories.
Several months ago, one of my brain injury tweeps told some of us how she’d gotten a weighted blanket for Christmas and was sleeping snug as a bug — at last. I hadn’t heard of a weighted blanket before. She explained how she’d heard of them through her work with children with autism, and I looked more into it. As I did, Ballast Blankets out of Alberta reached out to me on Twitter, I checked them out and liked their business culture, and I bought their teen size with the assurance of a 30-day money back guarantee.
My biggest concern was my thermoregulation issue: was I better enough to tolerate the heat from sleeping under a 7 kg blanket? Could I lift the weight regularly to wash and make the bed? I decided no and went with a lighter one.
Apparently, weighted blankets work similar to deep pressure touch and so create a sense of calm.
“While research on weighted blankets is sparse, deep pressure stimulation has been found to calm adults and children with anxiety, autism, and attention difficulties, researchers say.” WebMD, Seeking Better Sleep Under a Weighted Blanket
To do that, they must be 10 to 12 percent of your weight. Because of my shoulder and neck injuries from the car crashes years ago, I couldn’t imagine having to lift, adjust, sleep under a blanket weighing ten percent of my weight. The teen size is about 8 percent.
The weight is a personal preference. The blanket has an outer cover that you can remove easily and wash.
I ordered! Your shop was pretty easy to use, the biggest decision was trying to decide what size. 🙂 It didn't say the delivery time though. About how long before it's shipped and which shipping do you use?
I received it as the Olympics were beginning. Uh, bad timing, Shireen.
It’s very difficult to gauge the effectiveness of a new measure to improve sleep when you’re staying up until all hours and/or waking up super early to watch athletes compete on the other side of the planet!
Moving less than before is to be expected. Usually takes a few nights to adjust bed linens and choice of sleeping attire, etc. Let us know how the friendship with your Ballast Blanket evolves.
The friendship with my new blanket was a bit fraught because of the Olympics and then the Paralympics and, as well, the usual adjustment period that Ballast Blankets referred to.
I had the blanket lengthwise at first and under my coverlet. But that was too heavy, and I snored! I don’t snore. Not good. I folded down the coverlet so it didn’t add to the blanket’s weight. The second problem was my feet hurt from feeling weighed down. Also, although they’re usually cold, they heat up during the night, and under a weighted blanket, they became red coals. I find it’s better to wear socks and have my feet only lightly covered, weighted blanket or no weighted blanket.
I turned back to the internet and read again others’ experiences. One person used the blanket horizontally to cover both herself and her husband. I decided to try that and stretched the weighted blanket horizontally across my bed, covering me from just under my neck to below my knees. I used my coverlet to cover my feet and just lap over the weighted blanket.
Much better.
Once I recovered from the Olympics and Paralympics, the effect of the weighted blanket began to take hold. Some nights I got restless; trying to turn under the weight hurt too much. But over time, I got used to how to lift the weight and adjust my position. Restless nights have lessened overall though. I also am using my audiovisual entrainment SMR For Sleep session much much less as I’m not usually still awake at 1:00am . . . 2:00am . . . 3:00am. It’s true, my sleep had been improving. But it began to feel more solid, more like I was falling asleep quicker after my hypothalamus fix night session, and even getting sleepy before 11:00pm or midnight. These amazing changes that I’m still adjusting to could be because of the blanket and/or my PZ brain biofeedback protocol that I’ve talked about before.
It wasn’t just my subjective feeling that showed improved sleep, but also the sleep app I’ve been using for years. I don’t know how sleep apps determine “sleep quality,” but however they do it, it immediately shot up. It took awhile though for it to create a measurable improvement in my sleep. That improvement has remained consistent or risen slightly. Although, one may dispute how apps measure “sleep quality,” it is a consistent method, so I think the measure of improvement is valid.
Once I got used to the weight, I was like other reviewers and actually found it comforting. As summer heat approached, I began to worry about what I’d do . . . maybe use it on the couch like some do during daytime rests or naps. Instead, when temps soared and I began to burn, my body and brain pulled the weighted blanket up to about my shoulders, letting my feet stick out under a sheet. During the night instead of shoving the thing off me to cool down, it crept up closer to my neck. It seems that I’m so used to it now and that whatever it does to help me sleep, burning and mildly sweating* doesn’t deter me from using it.
Researchers are considering looking at using weighted blankets for fibromyalgia, but so far, I couldn’t find anything on how people with pain, physical injuries, or conditions like fibromyalgia tolerate it. From my own experience, perhaps less than the standard weight percentage may be tolerable and still provide some benefits. I think if I had no pain, it would be even more effective in countering the bad sleep effects of brain injury and PTSD.
As for Ballast Blankets, I found them pleasant to deal with and would recommend them. (I received the same discount offered to all early buyers.)
*I’ve written before about my injured brain’s inability to regulate my temps and to sweat, and I wrote in Concussion Is Brain Injury the possible neurological reasons why. I am still not normal apparently: sometimes I sweat and can cool down; sometimes I just burn.
The weather gods jumped our temps from jacket cool to sweaty tank tops. Pretty soon, we’ll be seeing caterpillars munching on flower buds and leaves as this two-headed monster was on a milkweed flower last year.
Brain injury and PTSD are like a two-headed monster sitting on your psyche, slowly munching on your sanity. When one head gets fed alternative fuels to calm it down, the other chews harder on your brains. There are days when there seems to be no solution.
I think I’m supposed to give you hope at this point, talk about how a kind psychiatrist can soothe one head while the other gets calmed and then switch to the other head while the one they was soothing is fed. Or talk about how psychologists advanced in treating brain injury with 21st century technologies can calm both heads at once. Or maybe talk about how inspirational quotes make the heads feel great. Or perhaps talk inspiringly about endurance and grit as psychologists keep feeding and psychiatrists keep soothing the monster.
I have nothing. I’m tired. An old friend reminded me I hit these plateaus. True. I’m still tired though. I think I just need kind listening and supporting as the two-headed monster grows a third head called grief and all three masticate my brain.
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.
As I come out of the narrow, tortuous pass that is a life focused on treating brain injury and the subsequent PTSD, I’m faced with the big question: what are my priorities?
The first time I said bye to focusing on treating my injured neurons, I hunted for the supports I needed to be functional. That was my priority then.
“T1: To me “treating the whole person” is about discussing how care plans fit into the patient’s life and GOALS vs. the patient figuring that out later in a vacuum. #patientchat” http://twitter.com/btrfly12/status/956952160234868741
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.
I quit.
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.
Last night at midnight, I joined my fellow Wrimos in the insane endeavour of starting writing a novel when one should be asleep!
It’s been too many years since I was ready to write, excited to write, able to join my fellow Wrimos at midnight on my computer. Since 2013, it’s been an exercise in desperation to be ready, to be able to overcome the chaos in my brain and the emotional shock of life events to throw myself into starting, never mind writing every day during NaNoWriMo. Some Novembers, I seriously wondered if I’d make it to the end of the month or get anywhere near the 50,000-word goal. Last year, the eye surgery added an additional complication because the general anesthetic temporarily screwed up my writing and the surgery improved my vision so dramatically, I was still adapting to seeing text on screens. I think I had to write on my iPad because the computer display with the way it required my eyes to track greater distances side to side than the iPad made me dizzy as heck. I have no problem now!
This year I want to get back to where I was in 2012: 30 chapters; writing every day; maybe blogging on it too. We’ll see about the latter because I need to regularly type some C++ code (from my lessons to make it easier on me) so that I can keep in the head space of my main character. I’ve set a goal of only 10 minutes per night of working in Visual Studio 2017 so that I won’t tire myself out toooo much. We’ll see.
But however this month goes, it feels good to be back to where I was in 2012 before events threw me off the track of my life. (To read the details of that, see my book Concussion Is Brain Injury: Treating the Neurons and Me.)
So. My 16th anniversary of the car crash that scattered my life into ashes is now. That crash didn’t only give me a brain injury, it also led to events that gave me PTSD.
From my experience, PTSD is a monster that feeds on the worst of human thoughts and beliefs and lifts up a magnifying glass to aim those thoughts and beliefs at the person who has the least power: children, women, the injured, the sick, the marginalized.
Fear partners with PTSD.
Fear incubates itself in the powerful, the doctors, the therapists, the healthy family members, friends, church congregations, who know the injured one, and wraps its tentacles around their hearts, whispering if you deny, if you leave, you will be safe from that person, you can believe nothing bad happened to them, it’s only depression and their refusal to take drugs that makes them so unwell. And the PTSD screams in delight when the people who say words like we’re there for you, we support you, we won’t quit on you then criticize, judge, deny, refuse to take phone calls or emails or texts.
And leave.
Or make you quit.
By driving you, the person with the PTSD, to quit proves to all that you’re the unwell one. It allows the “healthy” ones gripped by hidden fear to feel comfortable in their pity and sympathy for you, safe from having to repent — change their minds — to upheave their assumptions so as to give you a rock to stand on and heal from.
I mean, who wants to be a secure rock for a greatly suffering person, anyway?
Hidden fear influencing their thoughts, their beliefs, driving the person with PTSD to quit, to be alone, puts all responsibility for your pain and maybe self-destruction on you, the outwardly suffering one.
Destruction of human relationships, whether it’s familial, friends, strangers, or health care professionals is PTSD’s incubator and baby.
I was unwilling to reveal how my relationships have gone since my brain injury, and the toll on me has been horrible. I have been minimized, betrayed, abandoned, judged, criticized, derided, dismissed, disrespected, unhelped. It is no wonder I have PTSD.
The wonder is I’m still alive.
In spite of all that has happened to me, I am still here. But I can only remain here if I vomit out the toxic brew I’ve been living in and with since 2000. When I very recently began to leak out the remnants of my broken heart like putrid streams of bile, my physical heart rate began to stabilize at 100 — although two weeks at 100 is not really stabilization. But it will not continue to improve unless I write.
Back in 2012, I wrote a book on brain injury but left out the crucial social and relationships aspect of it. Yet the broken links between us and all the people whose lives we used to be in, is what destroys those of us with brain injury. How health care professionals ultimately don’t allow us to express our grief and our worst thoughts and how they don’t actively treat brain injury like they would cancer or heart attacks, is what slowly decimates us over the decades. New friends come and go; those who stay cannot fully understand the depth of our grief, having not known us before brain injury. Yet that very fact is what makes them much better friends than our old ones who abandon us to our daily lives. New friends accept us; old ones, with the occasional, mature, loving exception, do not.
The same hidden fears in 2001 that grew my PTSD, perpetuates into today like a perpetual-motion hamster wheel, despite my neurodoc’s heroic but futile efforts — futile because he will not use 21st century methods to keep on top of my complicated case and allow me to fully vomit the poison driven into me in the only way I can fully — private email and texting — because seemingly his 20th century methods have served him well. And, like my family, he doesn’t seem to want to change, in his case, his belief set as to what constitutes medicine.
And why should he?
He’s a rare breed; few specialists of his type are in practice. Patients have no choice who to see — if they can get in. He does. Patients have no choice in how much care they receive. A little is better than none, right? He does have a choice how much to give. And so he has all the control.
But at least he initially did better than the string of failures by other health care professionals. He began to succeed partially, but backtracked on his promises, breaking my trust. Then in this atmosphere of trust blowing away like sand, critical forces rose back up to deny the reality of my physical limitations and crushed the one kind person’s optimistic and realistic perception and attitude toward my brain injury and its effects on me. That person is backtracking on their backtracking.
I have metaphysical whiplash from all this backtracking by people purportedly there for me.
I’m being obtuse. That’s because I really don’t want to talk about it, yet I knew that my book on concussion was missing a critical component, one that is the main reason people with brain injury end up not reaching their potential but remain sidelined outside of society, trapped in a perpetual loop of seeming to recover yet not really. We all want to think things are better than they are. We all want to turn our eyes away from suffering and tragedy. But human beings are social animals who need other human beings to heal, succeed, thrive. When we turn away from the person with a brain injury, we not only tell them they’re value-less, we also deny them the opportunity to truly recover and to rejoin society.
When we demand they be normal and refuse to accommodate their real needs, labelling them as selfish and complaining and faking and a disappointment, we deny ourselves their contributions to our lives.
I can’t endure it anymore. I have snapped; I have started spewing words all over the place. The private becomes very, very public.
My book will be updated. I have nothing left to lose. The important people in my real life seem to not want to change their beliefs. So I will. To save my life, I am throwing it out. I am changing my belief that some things should remain private.
My iron self-control has crumbled under the onslaught of abandonment, judgement, criticism, and emotional turmoil.
My neurodoc is trying to keep me from doing a Toller Cranston move. But I can see why Cranston chucked his entire life out the window and left it.
Navigating everyone’s hidden fears, assumptions, determinations to not change the way they do things, is wearing.
Trying to accommodate and be constantly OK with whatever is said or done to me so that I won’t be left or discharged is joyless.
No wonder fatigue is my constant, unrelenting companion.
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