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)

Brain Power

I Read a Whole Chapter With Comprehension After Concussion

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Surreal.

I read an entire chapter, start to finish, using Lindamood-Bell visualizing and verbalizing method. First time since my brain injury. OMG!

I got to the point of being able to read an entire chapter of The Screwtape Letters about 2 months ago but not in one go. Instead, I read for 5 minutes at a time or paragraph by paragraph or a page at a time. I finally got up to reading  chapter 1.5 pages by 1.5 pages on July 1, 2019. But I didn’t progress to reading 2 pages until July 20th. That was just one page off from reading an entire chapter in one go.

What I mean by one go is: Start reading the text, create concept imagery as I read, redo concept imagery if I’m “seeing” text in my head instead of a still image or mini movie, keep going like that until I get to the final word of the chapter, not pausing once.

Then do word summary for entire chapter: tell myself out loud what I just read by seeing the imagery in my mind and recall it from the images.

Then describe out loud to myself the main idea. I always stumble on this one. Today, I remembered the three-key-points method on my second try and got it!

Then ask myself: what do you conclude, infer, predict? Those questions, as always, help me see ideas or inferences I hadn’t seen when creating imagery and summarizing.

Fucking amazing. Yeah, it’s a short chapter. Yeah, it’s taken me till Chapter 23 of the third book I’ve read since I relearnt to read, to accomplish this. But like all the chapters of The Screwtape Letters, it’s dense with ideas, visuals, sounds, tastes, smells and, in this chapter, long strings of adjectives — I had to create an image for each adjective to help me remember what Screwtape thinks of this latest person in the patient’s life.

Lindamood-Bell instructed me that when I advance to the next level — whether from sentence to sentence by sentence or from paragraph by paragraph to page by page — I would not recall 100 percent. Sixty would be awesome. So during the word summary, having to check back to the text three times to remind myself of details or an entire argument and see imagery pop back up into consciousness so that I could close the book and recall it in word summary, didn’t faze me.

I can’t believe that with my brain injury, the huge setback from the Shingrix vaccine, and current rise of major stress, I finally read with comprehension from start to finish, without loss of focus, one whole chapter. Wow. Sweet.

And the professionals who specialize in brain injury who told me I had to accept I couldn’t read anymore and had to use strategies to make do with language going in and immediately exiting my memory and comprehension, were wrong wrong wrong. That’s why I wrote Concussion Is Brain Injury: Treating the Neurons and Me and am updating its companion web pages with my newly acquired knowledge on how to restore reading. Medical professionals are sweet people, but they’re WRONG, and you need to stop listening to them, go out, and find a way to get your book reading back — because you deserve to feel this awesomeness.

Concussion is Brain Injury

First Amazon Review For Concussion Book and It’s Five Stars!

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I browsed over to my Amazon page for Concussion Is Brain Injury: Treating the Neurons and Me (Revised Edition) to link it for a tweet or something and was about to close it after copying the link when my brain finally registered what my eyes were seeing: stars!

Stars?!

Holy —-, stars! Five of them!!

I got real confused. I shouldn’t have. After all, I’d begun a marketing promo to try and sell copies and hopefully get a review since people who’d read it had reviewed it in paper notes or to me personally. I really liked the paper notes — I’d read and reread them and there’s something to be said for their tangibility! — but they don’t let anyone know that maybe my book is worth reading like online reviews do.

I scrolled down and read. I found it hard to breathe and blinked hard. I’m so grateful for the reviewer taking the time to read my book and writing a good review — good because they understood what I was trying to achieve and wrote more than a couple of sentences. The word gratitude is inadequate.

Read 1 Books Reviews – Amazon.com
— Read on www.amazon.com/Concussion-Brain-Injury-Treating-Neurons-ebook/dp/B075XJK767/ref=mp_s_a_1_1

Concussion is Brain Injury

Ground Hog Day?

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BrainGirlAndCat does video blogging. She used to be on Twitter, and I came to know her through BIST, I think. The Brain Injury Society of Toronto recently tweeted out her latest video.

BIST (@BrainInjuryTO)
2019-07-08, 9:45 AM

“Every day is like Ground Hog Day,” From her home in Ireland, Brain Girl shares the story about the emotions that come up after finally getting an neuropsych assessment 7 years after her TBI. ⁦‪@ShireenJ‬⁩
– we think you may have some things to say about this
braingirlandcat.com/2019/07/06/whe…

https://youtu.be/kglHjd87ozI

It took me awhile to get to it. I have routines, try to schedule tasks or ToDos, try to keep to my schedule, but maybe it would be easier if my life was like Ground Hog Day. It isn’t.

There’s always something. A jackass, always one around in a city. Mice peeking out at me. Drivers whizzing up to the pedestrian crossing to block me safely crossing just in case they can insert themselves into a stream of traffic. My brain suddenly deciding not to read. Me having to think hard about which part of my routine I forgot and fix that to get reading again because no health care professional nor anyone I know in my social life wants to learn my health care routines because, you know, learning outside the box is hard and only the person with brain injury should have to do that. Giving up reading and practically the next day being catapulted into a life-altering reading comprehension program. Receiving my very first review of my revised concussion book. Promised money not coming through and digging through pockets and counting dimes because I really gotta have my coffee. Back in the early brain injury day, it would be creating minor fires or floods because of my slow processing. Now I just create floods because I still can’t process what my senses are telling me and problem solve quickly enough. Fun times cleaning up instead of staying in my usual routine . . . well, when does my usual routine stay monotonously the same? People suddenly pop into my life, change my routine, sometimes disrupt it, then disappear. Definitely not Ground Hog Day around here.

I can so identify with lack of joy, though. I almost had it. Almost touched it. Almost.

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!

Personal

Threads of Basketball Identity

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Green brain injury seed ribbon with stats on cardWatching the Raptors ascend to the NBA Finals and, after a heart-fluttering and TV-remote-power-button-workout Game Six, the championship, I began to reconnect to faint traces of my old self. My Junior High self loved basketball. I’d avoid other sports in gym whenever I could. Volleyball locked up my finger joints. Floor hockey was a game of avoiding vicious strikes to the shins. Baseball always began with the school meeting with my parents to say, yes, she can participate. But basketball was different. I didn’t need to get permission. I didn’t need to watch out for the real athletes. And I could dunk that ball, too! It was fun!

My high school hosted a basketball tournament and asked for volunteers to billet out-of-province players. You’d better believe I was volunteering my home and attending every game I could!

The problem with car crashes is that seatbelt injuries bugger up your shoulders and whiplash stiffens and straightens your neck into agonizing rigidity. You can’t dunk a ball easily after that — or launch one. But what really separated me from my love of basketball was my brain injury.

Memory connects us to our self. Injuries stop you from playing for long enough that memory fades and brain injury plays havoc with your identity so that you forget you used to love the game. And broadcast TV relegates games to channels only the well off can pay for, further severing any identity-connecting remnants. I remember it now as if those memories belong to another person, as if that person was telling me stories — except for one memory. My twelve-year-old self in the school gym dunking a basket, wishing this could go on forever.

Events

At The BIST Expressive Art Show

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The Brain Injury Society of Toronto holds an annual Expressive Art Show every Spring. This year it’s at Artscape Youngplace at 180 Shaw St. And I’m pleased to announce that I’ll be there with my book Concussion Is Brain Injury: Treating the Neurons and Me!

“the intricate details of the author’s experience are riveting and enlightening.” Kirkus Reviews

“Jeejeebhoy’s tale is highly emotional…uplifting, while giving a realistic view of recovery.” Self-Publishing Review

BIST Expressive Art Show May 21 to 25th poster 180 Shaw StreetThe BIST Expressive Art Show launches on Tuesday, May 21, 4:00 to 7:00 pm with paintings, illustrations, crafts, sculptures, and copies of my book available for sale at a deep discount ($20) and for personal autographing. I’ll also be doing a brief reading at 5:00 pm.

This year, I will also have one of my artworks — a photographic collage — on display. I’ve always been impressed with the evocativeness and beauty of many of the art pieces. I hope you will check out the show and the many artists there! And please come say Hi!!

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.