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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)

Personal

Divorce Is A Scream

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Divorce is a scream. A scream of one ignited by the unhappiness of the other one looking for salve elsewhere instead of within the two as promised before the reverend in the time when the two joyously united to each other, together.

That’s the problem with divorce.

Marriage requires both to permit it.

Divorce thuds into one’s life. One decides for the two without permission.

Too bad, so sad. Bye. Sayonara. I don’t love ya anymore, so you see I gotta leave you destitute, alone in your injury, no help from me to get better. Cause you’re not. Going to get better.

I’ve seen the left behind be catatonic from the thud, from the other one changing their entire life into a single one, without therapeutic attempt to rejoin, in a different home, with diminished finances, alone. I didn’t go catatonic. I had a brain injury. My affect screamed awake. Then shut off, and in doing so saved me. No, divorce was the least of my problems, and I wasn’t going to deal with it. I was too moved by his commitment to his in-sickness marriage vow. I was too much in awe of his love surrounding me, his sense of responsibility from being the driver in the multi-car crash that severely injured me. So much love and commitment he had to leave me. So I told my husband, the one who abhorred paperwork and left me to deal with all the legal papers and accounts, that if he wanted a divorce, he had to file for it. And pay for it.

I rolled on in my brain injury recovery. I filed away the divorce paper when it arrived years later. And continued on in my recovery. How does one celebrate a divorce? How does one mourn a divorce? Was his mother happy? Did she approve he remarried, a Catholic this time without any weird ethnic background and not coming from the big bad city of Toronto? His father was tickled pink, he of the psychopathic mind who revelled in pitting one loved one against another. Am I better off without a man who when the going got tough, grabbed the pricey artwork and ran then manipulated out of paying spousal support while improving his financial status? His parents sure raised him right.

That first night after he left, with my dog by my side who understood love, I felt better. It’s hell to be with another who blames you for his state of mind, who whines, “I’m happy when I’m away from you.” Yeah, that’s what happens when you can escape a problem. Unlike me. Wherever I go, the brain injury goes with me.

He saw only the problem, he saw no solution. He knew I’d had a brain injury. Didn’t pretend it didn’t exist. He called my psychiatrist and psychologist to, what?, complain? They refused to tell me what he said; I didn’t need to be burdened. They were sympathetic and protective of me. He didn’t once attend rehab with me, talk to the therapists, work with me to get better. Why would he when he and everyone who loved me so much could predict my future with deadly accuracy: a burden. Not better.

It’s been over a decade. Time to treat myself as a single. By choice.

Ice cream mango coconut rice pudding

Personal

Waiting

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Black dog sitting and looking out window in door with two boots beside them.

Something we’re all familiar with — waiting for a call. But after brain injury, it began to be a regular, daily, soul-sucking occurrence.

“I’ll call you back.”

Did they get my message?

“She’s gone to bed.” It’s 9:00 pm.

Is my phone connected? Picks up and hears dial tone.

“I’m busy.”

I feel so stupid, I thought they were ill. When did they get so busy? I miss our calls. I guess they don’t.

“Yes, we got your fax. We’ll call you when the doctor has an opening.”

How many months has it been?

I learnt that when you have a brain injury, people really don’t want to talk to you. Communication is a struggle, and the therapists can only help you so much when others don’t want to learn. But I also learnt that for medical appointments, reports, tests, you just have to gear up your loins and keep at it. Waiting is exhausting but gets you at the back of the line for extremely underfunded, under-resourced, and low-knowledge brain injury care. Bugging turns into a fatiguing full-time job but gets you the appointments and tests you need or you have to go through to get to the health care you need.

I haven’t had to wait for a call for a long time. I’ve changed my way of doing things so that I no longer wait for what’s not coming.

Until this week.

This call was regular as clockwork for years until the other person decided not to call last week. And didn’t tell me they weren’t going to. After I texted and called, they finally replied to say if they didn’t call this week, not to call them. So I waited. I didn’t know where their mind was, whether they’d call or not. I knew that their health had taken a downturn because of the usual medical fuckup. Between underpaying doctors for chronic care cases and doctors being unobservant and intellectually lazy, care of complex problems is abysmal. But through all our ups and downs, we had persevered in our regular calls. Apparently no more.

I waited. The phone never rang. I got the message. Life sucks, and I carry on.

Health

Nineteenth Brain Injury Anniversary

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The brain project, flamingo painted on a brain to represent mental vacation

It’s been a year of painted brains, painted masks showing the experience of injured brains, and no change. Awareness gets you nowhere, it seems. It’s been a year of screaming for help, giving up, and only then getting effective reading comprehension restoration and grief therapy. The irritating reality-denying be-positive messaging finally stopped, and the healing effects of getting the crucial help I’ve been seeking for my reading for almost two decades began.

I wish though I hadn’t had to yell and beg for the help I needed over and over and over and over. I wish people had had the courage and stamina to support me from the start in my recovery. I wish health care professionals had the excitement in their hearts to ditch the neglectful standard medical care of brain injury and innovate so as to give innocent people their lives back.

I hate brain injury. I hate that I had to pay the price of being traumatized to get the effective treatments and support I needed. Why are people so loathe to help the injured?

Personal

Small Treats Combat Social Isolation

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Marshmallow kitten in a white chocolate foam in a chocolate cupI sit in a noisy café, sipping fresh, black coffee, eating a cream-filled pastry, writing in my iPhone. My brain pines for peace. My soul needs the treat, the semblance of normal life. My brain will recover; I’m going to be tired by the time I get home regardless of where I go, anyway.

They say that these little kinds of social connections, the brief encounter with a store cashier, the discussion of what coffee to drink with the barista, the fast-disappearing engagement with one’s TTC driver, alleviates loneliness. It isn’t only the big social gatherings that prevent loneliness. In fact, I would say that the big social gatherings in the absence of regular phone calls, text chats, coffee dates, email hellos, only accentuate the downward change in social status, the loss of normal relationships, and the intense isolation brain injury brings.

At the end of a very bad year, I turned my back on the fiction of big social gatherings and scrimping for the future and turned towards spending on the present to gain these many small moments of smiles and hellos with strangers who became known to me and me to them. Even though they don’t know my name.

Brain Power

Introducing Whole Paragraph on the Seventh Day Visualizing and Verbalizing Reading with Lindamood-Bell

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Parthenon Frieze of Lapith and Centaur British MuseumMy consultant popped in during the first hour of my session and read to me a whole paragraph. I ensured I understood the idea before she began reading. The idea: as she reads, I’m to visualize — create images and moving pictures in my mind — of what she’s reading. When she’s finished, I tell her the story based only on the images I’ve created. Then she asks me questions about those images to help me fill them out and, as well, asks me what I picture in those parts of the stories I’d totally forgotten or hadn’t created images for. Once I have a vivid and stable series of images and/or moving pictures of the whole paragraph, like with Sentence by Sentence and Multiple Sentences, I give the main idea.

It is not as easy as the words make it sound. The effort strains my concentration ability; it fatigues so much, I’d like to quit; it’s a series of my mind consciously commanding my brain to create images as I push my brain to keep focused on the words coming into my ears and eyes and my mind once again consciously commanding image creation until the words blur into each other and fall out of my consciousness until I can again pick them up and create out of them an image.

The consultant had done this before with me on the fourth day. This time, some images popped into my head a little more readily than last time. I did well enough that she added Whole Paragraph to my regimen, as we’d discussed she may do during my progress report. I had a small heart attack at the idea of creating images on the fly and the thought of launching right into that and abandoning the comforting regimen of creating images one sentence or two sentences at a time, under the guidance of the clinicians. But never fear, we would retain the core part of the program. Sentence by Sentence followed by Multiple Sentence followed by Whole Paragraph in one hour. I wasn’t sure how we could fit that all in because I didn’t think I’d completed three tasks yet in one hour. But my consultant assured me that as I improved, the Sentence by Sentence wouldn’t take the first half hour but less time. That one takes the most time because we do each sentence individually.

When Lindamood-Bell consultants assess, the lesson plan changes immediately. No dilly dallying here. My second hour tonight included Whole Paragraph, a story on ancient Romans. No giving the brain any choice in the matter. Naturally, it went, WHAT?! You want me to do WHAT?!!!! Then it glared at me, demanded truckloads of sugar, we bargained, then agreed upon the usual ice cream afterwards, this time chocolate with its added benefit of a taste so strong, it belted the tongue and woke up the brain.

Brain Power

Day Three of Lindamood-Bell Reading Comprehension Visualizing and Verbalizing Program

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Swirl of chocolate ribboned meringue.
Swirl of Glucose

Not much to report on day three. Things are settling into a pattern. I’m getting used to them being in winter, with people being sick and dressed in puffy vests or jackets, while I’m slowly burning up in Toronto heat. I’ve met all the people I will work with, I believe. I hope so. Learning new faces and new accents every day, three days in a row, is not easy with a brain injury! Each brings their own angle to the work; I learn something different from each one, although the work is the same. We begin with one or two sentence-by-sentence then finish up with a two-sentence multiple sentence reading of a one-paragraph story. I think I’m fine as we begin. Within seconds, my brain goes, nah, don’t wanna work. The first sentence of the hour or of a harder task kind of fizzles away in my memory. Sometimes I can snag on to all the details in some sort of grasping of vague-feeling words. Other times, I’m prompted or the sentence is reread to me. After that, I can see the words, not images, of the following sentence(s) being read to me or that I read; then I must conjure up pictures representing the sentence or two sentences. But every now and then, image fragments appear as the words are being read to me.

I’m starting to get the hang of the fact that the pictures don’t have to make logical sense, just that they represent in a way that will help me remember the sentence(s). We finish when the clock runs out, wherever we happen to be in the last reading. Today, we stopped after I did a picture summary of a multiple-sentence recall. Thank GOD! I went and bit into an ice cream sandwich. Savoured its coldness and rush of glucose to my starving neurons.

Health

Two-Headed Monster of Brain Injury and PTSD

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Two headed striped caterpillar on milkweed

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.

Personal

Frayed

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Icing with chocolate stripes and a frayed photo effectI’m not really sure what to write. I’ve had a month of events coming at me, new writing projects and blogs popping into my inbox, keeping me going, prodding me into action, sweetening my life with purpose. . . Suddenly I’m having to initiate work on my own again. And I’m clueless.

Work ebbs and flows like swirls of icing on a chocolate cupcake. It entices to dip in a finger and taste its fragrant purpose. But blocks freeze motion, fray purpose; the icing remains untouched and slowly begins to harden on its surface.