Personal

Hope Malaise

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My first blog was a political one. Hope in the form of writing fuelled it. I titled it “talk talk talk” because, despite my brain injury putting dampers on my thoughts and talking, I like to talk, debate, engage. Maybe that’s why my first followers thought I was male then most bailed once I outed myself.

Checking out the Lunch Offerings on Dundas Street

Being able to write about politics — and then later tweet on them — gave me a sense of agency, of control over one aspect of a life that was not under my control. Brain injury, health care systems, the insurance mill, other people controlled almost every aspect of my life.

But that began to change gradually.

I began to gain personal agency as my brain injury healed. I didn’t have to use the alpha session on my audiovisual entrainment (AVE) device to spark my imagination into life. It sometimes sparked on its own, in a shadow of my old self. I didn’t have to get door-to-door transportation and tell my legs to keep moving in order to walk to a destination and/or take Toronto’s transit system, the TTC. I no longer had my brain dictating reaction to a threat to my person, agency, independence: my prefrontal cortex, after years and years of brain biofeedback training and discovering AVE sessions that worked better to calm injured neurons, had gained ascendancy over brain injury anger.

Writing on politics or animals or television shows continued to feel good; then when I was allowed out from anonymity, I expanded into Twitter, this blog, books. Recovery slogged upward; writing kept me breathing. Even when shock slayed my blogs, I kept up on Twitter. Even when my neurodoc took away my hope for a full recovery and a regained social life, I kept on tweeting. I somehow even managed to pull book manuscripts out of the gasping recesses of my brain every November for NaNoWriMo.

But

  • the politics of meanness disguised as speaking up for the little guy;
  • my worsening financials because highly educated people doing financially well in life resent taxes more than they want to help their fellow citizens out, never mind their family member, in accordance with their declared faith and values;
  • no remorse for the selfish, petty, resentful way people have treated me and instead a double downing of it;
  • justification for siding with the bullies, whether in politics or personal life, and not standing up for the isolated, the hurting, the permanently injured through no fault of their own in order to lift them back up into purpose-filled lives;
  • the health care system through doctors and bureaucrats not funding nor adopting neuroplastic models of therapy for any kind of brain dysfunction that would restore injured or malfunctioning neurons better than the current neurochemical, neurosurgical, or strategies-only model;
  • the continual ignoring of how inaccessible the TTC is, the city of Toronto is, by both politicians and the Ontario Human Rights Commission;
  • people who consider themselves good threatening the lives of other humans they consider bad because they’re walking across roads or along sidewalks legally;
  • people who consider themselves good choosing to act in ways that threaten the health of visually impaired, those on wheels, who have visual-spatial or balance issues, etc.;
  • the latent polite racism of progressive Canadians revealing itself in its reaction to the only non-white Federal party leader and the first one ever elected as well as to an Indigenous female politician who stood up to the white male Prime Minister;
  • the disenfranchisement of women in purdah* by white Canadian women declaring these non-whites have freedom of choice when the entire point of purdah is to block women from choice;
  • the endless parade of white men being elected as city, provincial, federal leaders as if the fleeting appearance of women on the scene was anathema and must smacked down while at the same time one party declares a man to be the same as a woman leading the party as if declaring himself pro-choice, appointing the first 50/50 cabinet, and throwing out two women who challenge him makes him so;
  • and entering another federal election with First Past the Post because one white man had decided against the wishes of a cross-country consultation to cancel his party’s electoral reform promise and all his female supporters who know, without a doubt that without proportional representation they will never achieve parity in politics, fell into line because, well, he’s a feminist, right?

— has made me want to shut the doors of my home and never leave again.

I usually experience a significant drop in my energy during September, but this doesn’t feel like the usual. This feels like the choices people make as individuals and as a society to resent those who struggle, to fear the injured as if by fearing they will not become like us, to disempower those not like them, to steal hope for having someone come alongside to support one into a purpose-filled life — steering me toward the quicksand of despair and shoving me into it hard.

Tempt Satan to Despair
Man holding sign that says Don't Forget About Us

Without electoral reform, we will never have a Parliament of collaboration but continue the state of oneupmanship. Your side will never always win. Eventually if you’re a winner now, you will lose.

*Pardah or purdah is a religious and social practice of female seclusion prevalent among some Muslim and Hindu communities in South Asia. It takes two forms: physical segregation of the sexes and the requirement that women cover their bodies so as to cover their skin and conceal their form. (From Wikipedia)

Concussion is Brain Injury

Camp NaNoWriMo?

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Ever since my CCAC therapist left, the one provided by community care under medicare, at about the same time my parents left the city, I haven’t succeeded at Camp NaNoWriMo. It was difficult as it was. I worked hard to ramp up to doing both Camps in April and July, in addition to NaNoWriMo in November, and could only ramp up because of health care and parental support. In fact, my therapist believed so much in my ability to write three books a year, that her belief in me rose me up over fatigue, my brain-injury related reading and organizational problems, and other issues that made writing every day quite exhausting. When you believe in a person and act out that belief, you empower them. No one else has come close to what she did for me because she initiated action based on her belief.

When therapist and parents left, my brain-injury issues plus PTSD suddenly exploding blocked me from starting or, if I managed to start, finishing Camp NaNoWriMo.

That may sound like a cop out, but cognitive work, being productive, initiating, deciding things, being organized, are complex brain functions. We don’t think about them as adults because the brain learns and makes automatic these functions as we grow up over 21 years or so. Going back to year one after concussion is a bit disheartening and needs all-in support and treatments to get back to adult automaticity. Trauma, bad memories, flash up a big stop sign to it all, as well.

I’m rambling.

I think I’m going to try Camp NaNoWriMo again. Ever since I fired him then had a talk with and rehired him, my neurodoc has become actively supportive, helping me with my reading practice. He’s also the only one to occasionally prod me to write an article for Psychology Today. This past November, for the first time, he took my NaNoWriMo writing month seriously. Previously he thought it was just some trivial thing that if I didn’t succeed in writing during it, I could write another time, and I was just being rigid minded if I got upset about being unable to write during NaNoWriMo because of exhaustion and/or PTSD. He’s now understood it’s a critical filling in of cognitions my brain injury took from me. The only substitute for NaNoWriMo are humans who sit with me several times a week, like during the ten weeks medicare granted me help to write Concussion Is Brain Injury: Treating the Neurons and Me.

My neurodoc said he could help me with sticking to Camp. I have no great expectations. I’m setting the bar low and a goal for something I really need to do: update the pages tied to the Learnings chapters of my concussion book. I’ve learnt a few new things since I published it, especially in reading, as regular readers would know!

I’ve left signing up almost to the last minute. I haven’t yet identified all the web pages I need to update or figured out a schedule. This kind of prep is what my CCAC therapist would get me to do. Don’t just think about it – write it down in my calendar, outline it on my iPad, set up files on my computer. And sign up!

Books

NaNoWriMo and the TTC

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Seven days in, and I’ve written every day of NaNoWriMo. I haven’t been able to do this in years. Most amazing part: write, edit, fine tune, and post one chapter to Wattpad every day. Up to now, at best, I wrote one chapter daily during November. Never edited before. Too scared to even post it for public reading.

It’s rather exhilarating.

And exhausting.

My body feels run over. My voice is dropping in volume. My brain wants a time out — until I begin thinking about Louise, about having fun with this story, about how suddenly riding the TTC is fodder. The worse the slog, the better the fodder. Too bad this counterforce to TTC draining, straining, enraging will last only a month. Maybe if lots of people read it and share it, it’ll continue doing good for all those who have no choice but endure whenever they step onto the red-and-white inaccessible transit. Check it out 👇

Louise and The Men Of Transit

Books

Early Exit Exiting NaNoWriMo, Entering Editing

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I promised myself that this NaNoWriMo would be like that of years ago — write a novel in a month, take a few days off, and begin revising.

I finished the novel. Took a few days off. Then one day grumbled into the next, tiring me, straining the brain. No sign of revising.<br><br>Then the spirit of noveling tapped my imagination. Thoughts began to emerge out of the gloom of fatigue and endless medical appointments. I tried to write yesterday, but neurons flagged. But today —

I was ready. My brain was awake. Neurons sparked. Imagination sprang up. I revised one chapter, well, okay, I struggled through it. But I told myself the next one was mostly dialogue. Easy peasy. Keep going. I did! And I had two chapters revised before breakfast!

I’m planning on finishing in a couple of weeks and finding beta readers. Some who know coding and some who have never seen a line of code. Game for it?

Become a Patreon patron today to get a sneak peek of my story, decide if you want to get your hands on the whole manuscript and to have your feedback help me finish it! Because beta readers are the best!!

Books

Back in the NaNoWriMo Noveling Saddle

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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.)

Books

NaNoWriMo: Chapter 4 on Twitter

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Chapter 4 sees Chantie take BobbyFlax up on his offer to help her learn to navigate the Twittersphere.



Books

NaNoWriMo: Chapter 3 on Twitter

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A little bit of a hiccup in the Twitter timeline. But it’s early days, and so I was able to redo @BobbyFlax’s tweets. Here then is the Twitter portion of Chapter 3 of my #nanowrimo novel in progress, Chantie:



Brain Biofeedback

Novelling Can Help Only So Much With PTSD

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Writing is good for me. Writing a novel during NaNoWriMo is exciting and takes me out of the reality of my PTSD and brain injury. But writing can only do so much. And when reality intrudes in the form of a requested conversation with one’s insurance broker, the heart can go a little wonky.

I like my insurance broker; I’ve always enjoyed conversing with him. But I hate insurance companies. My neurodoc asked me when I first began to hate them — apparently “hate” is a clue that insurance companies and any mention of them are a trigger for my PTSD. I had to think about his question. I didn’t hate them after my first encounter with them when I was in a car crash in 1991. I saw them first as a partner to help me get better then later as an adversary.

By the year 2000, insurance companies and their regulations under Ontario law had changed drastically. Instead of a let’s-get-you-better attitude, the person who answered the phone when I called after my 2000 crash, made out like she was taking my claim while giving me the runaround. Just making the claim in 2000 was hell for me. (Making a claim under current Ontario law is much, much worse.)

That’s when I began to hate them.

I suppose I would’ve been all right if I’d spoken to my broker himself, whom I’ve known for decades. But I was put through to a staff member, someone I didn’t know. Not good for someone with a brain injury. We like the familiar. We want to talk to the person we know. Then she was asking me questions in order to update my file. All perfectly reasonable. My traumatized brain thought otherwise. I struggled not to bite her head off as inside I screamed, I want to get off the phone! Now! Somehow I answered her questions and later I spoke to my neurodoc who told me that that call was a huge trigger. Huge!

Oh.

I had dreams that night, and this week, though I was in what I call my happy neutral place, the biofeedback sensors told a different story. My heart rate didn’t even try to sync with my breathing. Instead it trotted along at about 109 then zipped up to as high as 189 and as low as 37, over and over. Geeze.

You know, this is why we have emotions: to tell us how others and events are affecting us. When our affect is flat or our emotions inconsistent or AWOL, we think we’re doing okay. And then wonder why we have physical issues like gaining weight (or losing it). I’m thankful I have the biofeedback and my neurodoc to do a reality check when my emotions aren’t giving me these crucial clues.

Books

NaNoWriMo 2014: Chapter 2 on Twitter

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So far, my Twitter experiment is working out. I write my chapter; go rest, eat, drink; think over whether I should tweet out a few excerpts through my own account; decide yeah, extra work but good for the readers; type out my tweets and my characters tweets into a separate document; think them over: did I miss any necessary detail? Am I being too obtuse (I’ve been accused of that!)? And most importantly: is the character count including hashtags within the 140 limit? Then I go to it and hope for the best.

So here, in case you missed them or are unable to follow me and my growing cadre of characters on Twitter, are today’s tweets of my twovel: