Brain Health

New Relearning Challenges Post-Eye Surgery Complicated by the Brain Injury

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I wrote previously about my vision changes since my brain injury and how eye surgery 11 weeks accelerated them to give me binocular vision, proper depth perception, improved facial perception, enhanced colour perception, and new vision for details and distance. But with dramatically improved eyesight comes the need to adapt. In the Bible, Jesus healed a blind man. The man declared: I see sticks! Jesus laid his hands on him again, and the man said: I see people!

Well, there is no Jesus making my brain instantly able to process, integrate, and recognize all the new info my eyes are sending it. So it’s doing it in its own slow time – it’s going: what the hell?! What am I looking at?! You expect me to walk, read, write, see faces with this unfamiliar data?!!! Nuh-uh.

Great. I had anticipated fatigue after my eye surgery (energy is improving but not yet reached pre-surgery levels) but not a whole new slew of things to relearn!

Right after surgery, everything was so sharp, so clear, yet my brain didn’t know how to navigate it. It’s like being a toddler seeing the world for the first time. You know how toddlers walk? Well, I’m older so I managed not to do the fall after walking too quickly right out of the gate part; but … it felt like every neuron had filled with lead and was being used by my visual system when I walked along the streets, and I quickly had to take my mother’s arm not to feel like I was going to fall over. As I took one slow, careful step after another in the early post-surgery weeks, I lurched without warning and leaned heavily on first my mother, then an umbrella, then the cane my father leant me so as to stay upright. And the sensory overload both distracted and mesmerized me. A leaf blew across the concrete, and its crisp rustle and dried-up blotchy edges drew my eyes and ears away from the task of walking. I stopped and stared. A car whizzed across my eye line from left to right, and my head swam, and I had to lean against my mother or a fence or a building. People came up from behind me and cut in front of me, and nausea rose up. People walked towards me, and I felt so unsteady, I had to stop until they passed. I still do.

It’s not only walking I have to relearn.

Text on the iPhone was sharper than I’d ever seen it. I could read it the day after surgery, yet my brain didn’t seem to like it. Two weeks after the surgery, I read non-mobile friendly small print for a few seconds. Dizziness assailed me, my entire body heaved; I sat down quickly, laid my head down, and shut my eyes until the humours in my brain stopped swimming and I no longer wanted to vomit out the discombobulation.

Writing is worse. Watching letters pop up – appearing suddenly, lines of words moving up to make way for the next line, forcing my eyes to move from left to right and then down and back up – makes my head hurl. It is getting better slowly; after about two months, I felt my brain had adjusted well enough to write my first post on the iPad (I had yet to turn on my computer). Within 15 minutes, I was seriously dizzy and a bit nauseated. I had to rest my head and my eyes for quite some time before it all settled down. Now 11 weeks out, I can write for about 20 minutes before my eyes ache and I get later-onset reactive dizziness.

Why all the whirling in my head from writing on the iPad? I wasn’t straining my eyes. I was in good light. I could see the screen well. I was using a keyboard.

Too wide a screen, my neurodoc told me. The iPad requires greater degrees of eye movement than the iPhone. The iPhone has a narrow screen such that your eyes won’t move much, he explained. Write only on your iPhone, gradually transition to the iPad, and then to your computer. Sigh, oh, OK.

It’s taken me from 9.5 weeks post surgery to 11 weeks to write this post on my iPhone. It’s going to be a slow process getting back to my normal writing.

My neurodoc, concerned about me not having turned on my computer, phoned me up at a pre-planned time and guided me back on to it. Bugger. That’s what my eyes thought.

It had been 60 days since I had last turned it on, double the maximum time I had been off a computer since the 1980s (because of being on a month-long vacation).

My neurodoc budgeted 10 minutes, half the maximum time I was on my iPhone in one go at that point in time; I lasted five. My neurodoc said to stop because my eyes didn’t know how to perceive the screen. I was seeing yet not seeing. And it was making me dizzy. As usual.

When I saw my eye surgeon a couple of weeks later, he instructed me to get a monitor with more contrast, with the same resolution as my iPhone. My mother took me shopping immediately. I have had the monitor only a few days, but the first time I used it, I increased my tolerance by 60%. My eyes saw letters clearly not as fuzzily outlined shapes, my brain knew my eyes were seeing the screen, and perceiving was no problem. Phew.

My surgeon is very pleased at how well and quickly my eye has healed and last week handed over the reigns of normalizing eye-brain connections to my neurodoc, who has picked them up with gusto and has come up with a “comprehensive strategic protocol.”

I have to:

  • Relearn how to walk.
  • Relearn how to use the TTC.
  • Relearn how to see moving objects, including people.
  • Relearn facial perception.
  • Relearn how to read words with two eyes working together.
  • Relearn looking at the computer
  • Relearn how to perceive moving letters as I type and handwrite – with the latter, that’s happening naturally but with typing it’ll take some work. It took 7 weeks to get back to typing; handwriting I was able to do right away with a little bit of motion sickness every now and then.

Movement is the enemy, whether my eyes move, I move, or people, objects, letters move.

Since independence is the most important goal, my neurodoc and I are prioritizing my walking.

My eye surgeon told me the first thing is to stand. When I sit, I’m fine. Moment I stand, I get a tad disoriented. That’s because standing engages certain pathways of proprioception and perception. Walking engages more pathways. Seeing moving objects, like people and cars – and oh my god, cute doggies are the worst because they move different parts in different directions all at once! – engages more neural pathways, especially when I’m walking at the same time as seeing or hearing moving objects. Because I essentially get motion sickness when I walk and so am stuck in my place unless someone walks with me, even with using a cane, relearning how to walk is the priority. I need my independence back, dammit!

The complicating factor for me is my brain injury. My injury makes reactions slower, processing slower. And perhaps the fact I have been practically blind in one eye since I was about three years old may be another complication. Turns out that research suggests that people who are congenitally blind from birth process spoken language in their visual cortex. I have been visually impaired early enough that that could conceivably have happened to me. That might explain why I woke up from the operation with an uptick in my hearing – and that since then my hearing and my vision have been duking it out in my brain such that for several weeks after surgery talking to someone on the phone gave me motion sickness as much as reading does. It’s eased up over the weeks. But like after my brain injury, I’ve had to once again give up listening to the radio at the same time as doing anything else. Or listening to it at all because when I rest my visual system that includes not listening to anything either.

When I was a kid, what input my eye could register, my brain mostly shut down – until my brain injury. However, the increasing vision in that eye cannot just be because my visual cortex can no longer ignore the piss-poor vision in that eye; it has to be because somehow the retina is regenerating. There is no way that I can see – however blurry and vague – the largest letter in the eye chart for the first time in my life as of March simply because my brain began processing input from that eye after my brain injury.

Because I react slowly due to the brain injury, I seem to get delayed dizziness and nausea. This is akin to doing something and then the next day being clobbered by fatigue. It is difficult to figure out what you’re doing is not what the brain can tolerate when the brain doesn’t bother telling you for several seconds at best or minutes or hours later at worst (or in the case of fatigue, a day later). I learnt I had to walk slower than a glacier moves so that my brain can take in all the new visual input, understand where I am in space, and perceive my surroundings at a rate that it can process without making me lurch, get dizzy, or become quite nauseated, in order of worsening brain overload. I’m having to learn when I can speed up without those awful reactions. Seven weeks out, I pretty much stopped lurching. Eleven weeks out, I still have the occasional sudden off-balance, which is better than lurching. And sometimes I only know how off balance I really am when my wrist hurts from leaning heavily on my cane. I’m being careful enough not to get to the point of being nauseated, though. I also bought motion sickness wristbands, which surprisingly do work.

I stared at the visually quiet far wall to steady my head as I heard every voice individually, each one marrying to clothing colours my eyes were seeing so clearly – very weird and overwhelming

My eye surgeon said that he’s had only a few cases similar to mine; the longest recovery took a year. To avoid that, I use the alpha session on my audiovisual entrainment unit at least weekly to cement my new awareness from left to right to ahead and down to my feet and either beta or variable mental flexibility sessions to sharpen my brain. I have a home laser unit and every other day use Dr. Kahn’s neck protocol for concussion (see Dr. Norman Doidge’s book The Brain’s Way of Healing – a review with links) to stimulate the cerebellum to relearn movement quicker. I am trying to daily do balance exercises, but initiation deficit does pull me away from my intention. My iPhone reminding me isn’t enough to overcome the deficit. This is par for the course with brain injury. It sucks.

I need a person in my life to daily or at least weekly encourage and remind me when I go off kilter.

My balance exercises are:

  • Stand like a stork, on one foot then the other, facing the mirror. For the first time since my injury I can stand on my right foot, left foot against my right calf, and not wobble or suddenly put my left foot down to prevent a fall. I have to see myself full in the mirror to remain balanced, but I can do it!
  • Throw a ball from hand to hand. I’ve mastered this. So now it’s tossing a ball with one hand – easier with my left than my right hand (my right side muscle tone is tight since the injury). And I have to juggle two balls. I tried the latter Friday, and my hands had no idea what to do!
  • Tandem gait – with your cane my neurodoc admonished! Um, right.
  • Stretch neck to the front and back and side to side.
  • Turn to the right 180 degrees – now increased to 270 and eventually will be to 360 – and repeat to the left.
  • Walk around corners.
  • Walk backwards down the bottom three steps of a staircase, holding on to the banister.
  • Watch dogs, birds, trees sway in the wind, people moving while standing up. Watching movement while sitting doesn’t bother me; but the moment I stand, yikes! So that’s what I have to practice.

To help me relearn how to walk and use the TTC with my vision, the CNIB sent me a Orientation Mobility Trainer. He’s the best! Once or twice a week, he takes me for a walk, instructing me on how to walk with eyes glued to a solid unmoving object to steady me, how to walk with awareness of my dizziness and my surroundings, how to navigate people walking toward me or from behind me, how to deal with bikes on the sidewalk and cars trying to beat me, how to go around a corner sans getting so dizzy I have to stop, how to cross a side street, how to get used to having traffic zoom alongside my weak side where the peripheral vision is new, how to use the Accessible Pedestrian Signals at some lighted intersections, how to safely get down stairs that I’m not used to or have long flights, how to walk where there are crowds because people ignore canes (yes, I was shocked to discover that too! I’ve learnt to stay in my lane and not allow myself to be pushed into the road, a parked car, or building because a group enjoying their conversation don’t feel like sharing the sidewalk. Asshats.) My mobility trainer assigns me increasingly difficult homework every week. Because I don’t have someone to walk with me, other than my mother once a week, I haven’t had as much practice as I needed. I’m waiting for a Vision Mate so I’ll have someone to walk with me. Then I can go farther and try more difficult things than I can on my own. At this stage, I can walk in quiet areas and get close to major streets on my own. But I have not crossed a lighted intersection sans someone with me. Other than my PTSD from being hurt in a car crash making me nervous of cars, Toronto’s traffic lights are timed for fast walkers only. 1m/second I was told. If I reach the other side with someone between me and the traffic before the light turns red, I’m lucky. I have to call 311 to tell them to lengthen the lights! I’ve done that a few times downtown – when I was walking fairly well. Toronto is full of shit when they say they’re pedestrian friendly. But I digress.

Anyway, my mobility trainer and my neurodoc constantly remind me to take my time, to stop to regroup when I need to for as long as I need to. The tortoise wins the race, I’m reminded.

Brain Health

Eye Surgery Post Brain Injury and the Vision is Amazing

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I had eye surgery to improve my reading and had rather . . . unexpected results.

  • Full left to right panoramic vision
  • Peripheral vision on both sides, not just one
  • Depth perception I thought I had but apparently not because suddenly objects had crannies and hills I hadn’t seen before
  • Details! So many more details I can see
  • Colours look richer, more intense, more nuanced — I can distinguish similar colours easier
  • Facial perception has changed — not only can I see more details and colour gradations, but I think I’m perceiving micro-expressions I used to miss. Um, everyone looks older though. No more photoshopped view!
  • I can stand like a stork on both right and left legs equally well sans wobbling or only a little bit.
  • I can swat a fly on the first try — this is so very satisfying.

The world looks familiar yet so brand new! Despite my eye feeling and looking like it had undergone a few rounds sans bruising — ice cold compresses with a take-home washcloth for the win! — I could see really, really well! Holy cow!!

ice it, squeeze it, lay it gently on the eye

In the first month or so after surgery, I’d stand and stare: stare at bricks on houses, at their fine texture, subtle shadings of reds and pinks; stare at trees, their leaves with their popping-out veins and layers upon layers of branches; stare along a main street, the streetlights marching down the street, the farthest one as sharply focused as the nearest one, the far-off people way down the street so clear and never quite disappearing into the vanishing point I’d never seen before; stare at text on my iPhone and marvel at how crisp it is.

I expected improvement but not to this scale. And I didn’t expect my hearing to shoot up! I awoke from the anesthesia to a plethora of sound –holy cow, the nurses and patients were loud in the recovery room. I could hear every conversation, including the whispers between nurses about some of the patients. Ahem. Or boss nurse telling underling nurse to ensure I swallowed the pain pill while the old-fashioned painkilling tablet burned the side of my tongue like sand paper and the oxygen saturation monitor beeped beeped beeped till they stuck an oxygen cannula up my nose while my fellow patient regaled us all . . . Oh wait, shhh.

None of my brain health care team anticipated what would happen; my eye surgeon had given me some indication in that understated way doctors do. He said, you’ll have more efficiency and better proprioception and perception.

I eventually understood that more efficiency means that the data taken in by the eyeballs is increased and fed more efficiently to the brain. Less guessing, I guess, and more concrete info my brain can use to see.

But no one anticipated how much that such significant change would discombobulate my brain. The only one who could have, who had the neuroscience knowledge (or did, but you know how experts are: they get real specialized and forget their basic knowledge; they hear eyes and think that’s got nothing to do with my specialty, the brain) and who had all the information about my eyesight, the surgery, and my vision changes over the last 16 years and who knew the surgery would give me better vision and thus help me read easier, which is why he urged me on — the only one to have anticipated what could happen . . . if he had used his little grey cells, didn’t.

The problem with medicine today is that doctors have bought into medicine is only evidence-based, and if there’s no evidence, then there’s no need to pay attention to it. The practice of medicine today has forgotten why medicine is also an art; too many doctors don’t use their little grey cells when faced with the unexpected or to anticipate what may happen and for which no studies exist to explain — yet. The brilliant ones, especially when it’s obvious no one else is helping their patient, practice the art of medicine. That’s what my eye surgeon did. He found my vision changes remarkable, warned and reassured me at the same time that because of my unique cognitive situation (aka brain injury and a brain that developed with vision from one eye, pretty much), it would take some time to recover. He couldn’t anticipate how long until my eye had healed fully and the system had restabilized, about the end of June, early July. Until then, everything was in flux.

He added: all he did was the surgery, the rest is my doing. Brilliant doctors are also humble ones.

We had one big clue what may happen. Before the surgery, for the first time ever, I identified a letter during a prism test. It looked tiny and vague (it was in reality very big) but I saw it. Later, I could see vaguely and blurrily with my scarred eye the largest letter on the standard eye chart.

I almost cried.

We don’t use the eye chart to test acuity with that eye. Instead they ask me: how many fingers? But back in March, I had without warning graduated to the eye chart! O.M.G.

After the surgery, on the same day, I could see taped on the wall, the large E, rendered in pink and green pencil lines. I couldn’t believe it. Never before my brain injury had I thought it possible.

During the early-followup-to-reassure-me appointment, I not only saw the largest letter vaguely and blurrily, but I also saw the edge of the next one lit up white on a black background with the room’s lights off. I saw it as an I. My mother said it was a large O. To even see the edge is hard to compute. As my surgeon said: remarkable.

2 drops = ahhh. no presevatives to irritate eye that felt like it had a loose contact lens in it

My eye was physically healing well — artificial preservative-free tears eased the soreness and dryness and didn’t irritate the dissolving stitches  while painkillers only touched referred pain into my temple but not the pain in the eye itself (it took 7 weeks for stitches to dissolve, 8 weeks for all pain and intense ache when used to go). But my brain had trouble seeing with eyeballs that were sending it vastly more info. I couldn’t walk I discovered without every neuron feeling like it was under carbon-crushing pressure. Worse, I lurched around and had delayed dizziness and nausea to walking, reading, writing. Yikes! My surgeon referred me to the CNIB, and they sent me a mobility orientation trainer. Thank you God! More later.

Brain Health

Eye Surgery for Reading

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Having had a closed head injury type of brain injury aka concussion, I didn’t go through the in-hospital and surgical experiences those with skull breakage do. Although I’ve had scans, sat for hours in waiting rooms to see umpteen specialists, I haven’t had an invasive or surgical procedure since my brain injury.

I will soon.

I’m a tad nervous.

Because of my wonky heart and brain injury, I had a pre-op consult with the anesthetist. The take-a-number and wait forever part was familiar. And the are-you-related-to – yes, he’s my Dad – part was too. And the wait-and-wait-and-wait for a blood test was too. Even the ECG and inadequate blood lab staffing was familiar, only the surroundings were new: tired, old, cramped, in need of all that ego money that goes into shiny new buildings with rich men’s names on them instead of into services that serve patients, services like cleaning hospital bathrooms more than once a day or staffing ORs or blood labs or having enough specialists to serve the brain-injured population. But then who would know how generous you were with your millions if you can’t proclaim it in metres-high letters on the side of tall, glistening edifices? But I digress.

The surgery is on my eye with the scarred retina; it is to finish the job my brain injury weirdly began.

When I was tiny and living in Bombay, I had a bad case of the measles and had to be put in a dark room to protect my eyes. Yes, folks, the measles can blind you not just give you a bad case of the spots. I came out the other side with one eye having a scarred retina and a damaged or distorted macula. Whether it was the measles or coincidental, I don’t know. I saw eye doctors. My earliest memory of Canada is walking down a long hallway in the old Bell Wing, my hand in my Dad’s hand, to see the ophthamologist. The kind, talk doctor recommended eye patching to force me to use my scarred eye. The pain was intense; the vision like that of a darkened dream. I taught myself to use my hand and touch as a guide while I complained increasingly louder about the pain. The patch idea was discarded. Eventually, I got used to seeing only colours and shapes out of that eye, to not be able to count the fingers on one hand or maybe somewhat after cocking my head this way and that to get the fingers into the view of my functioning retina.

So you can imagine my shock when one day during acupuncture after my brain injury, I was lying face down, staring through the head support, and suddenly realizing I could see the tiles on the floor with my bad eye.

Um, say what? I blinked.

I eagerly anticipated my next acupuncture appointment to see if that was an hallucination. Nope. Fairly quickly over the months, I began to recognize the shapes as identifiable objects. Within a year, I had peripheral vision on that side. It made walking a jumpy affair. For years I had walked blithely unaware of things on one side of me; suddenly people, cars, squirrels began jumping into view. A bit unnerving. It took me years to get used to it.

After a long while, the light levels in that eye rose to match the normal light level of the other eye. Brighter vision makes seeing easier. I have no idea why everything was darker in that eye or why suddenly it was like a darkened lens had been removed, but it was … interesting.

And then one day, for a moment, my two eyes worked together, giving me true binocular vision and one heck of a surprise.

I had always assumed that through the magic of my brain, I could see 3D. I suck at estimating distance and size, I can’t perceive optical illusions, but I can tell when things are farther or closer or wider or smaller. And then that day when my eyes said, hey, lets work together, suddenly what I was looking at got fatter, showed more of itself, and popped out at me.

Whoa! This must be what it’s like for people when they watch a 3D movie. Neat!

I began manually able to do it myself. What I saw was clearer yet kind of vaguer. I guess that’s what happens when the brain overlays the sight from a cobwebby retina over an intact one; but as it happened spontaneously more and more and for longer periods, my brain, I think, filled in the holes, so it’s not quite as vague looking but more solid.

In the way of these things, the doctors couldn’t care less. Oh yeah, that’s interesting, they said, but beyond that – yawn. The biggest response I got was from my mother and neurodoc. And the eye docs’ Twitter account.

Unbelievable.

My neurodoc felt that the clearer, sharper, truer binocular vision I had when both eyes saw together would help me with my reading. Would surgery to get my scarred eye to track with my good eye in such a way to have permanent binocular vision and not rely on the sporadic-when-I’m-not-fatigued timings, help me read easier, physically speaking? Maybe it would cut down on my headaches during reading.

With heroic efforts on his part and my eye doc’s, I finally saw a surgeon, who said he could test it out with a prism. If it worked, he could do the surgery, but the benefit to reading was entirely my bailiwick.

It worked. And so I will go in for day surgery. The anesthetist will take a couple of extra precautions because of my brain injury, etc. It will be like Star Trek – I’ll have a process EEG! The electrodes will monitor my brainwaves so that they can precisely titrate the general anesthetic. It will also tell them if I’m aware (so will if I move as they won’t be giving me a muscle relaxant). That’s reassuring!

Recovery for a normal person is no big deal, they intimated. Nausea will be the worst part because of working on the eyeball. But I haz a brain injury. My brain doesn’t have normal resources; fatigue is going to be a big problem. I’m resting up for several days before and will after too. And I’ve stocked my freezer, but I wish I had homecare. Oh well. If I have no energy to even nuke something, I can always chew on chocolate!

Brain Health

Graphic Wordless Novel Reading Rehab After Brain Injury: An Update

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I’ve settled into a pattern of reading the wordless graphic novel Cinema Panopticum. Once a week, I read 8 pages and get a concentration headache during it. Afterward I do something mindless until I recover my energy. It’s good!

Each page has from one to four pencil sketch panels. I take in a panel as a whole and then study the drawn details carefully before moving on to the next panel. I may talk to myself silently when deciphering the facial expressions or what I think is happening. When I reach the end of a page, I recall what I saw out loud. Then I turn the page.

If I forget something, which I usually don’t, I will re-study the relevant panel(s). On the odd occasion when I realize further along in the story that I misinterpreted an earlier panel or facial expression, I’ll go back and take another look.

It’s hard work, but I enjoy it cuz … it’s a book!

Last weekend, I tested my long-term recall of what I had read up until where I’d last left off. I had good recall of the book’s intro scenes and the first novelette, The Hotel. I took longer to recall the second novelette, The Champion, and I remembered its events out of order (I did know what order they were in, but memory often has more trouble recalling the middle of something than the beginning and end, and that’s what happened).

But to my horror, I had zero recall of the third novelette – what I’d read only 7 days earlier. I thought I recalled the title at least. But nope. “The Enterprise” is not the same as “The Experiment”!

It’s kind of weird I had more trouble remembering the recent reading than the first part of the book I’d read way back on March 19th. You’d think it would be the other way around. But thinking it over … I talked about the novel and first novelette a bit. I talked about the second one less so and the third one not at all.

Talking about what you’ve read aids recall. Gotta remember that.

Anyway, after testing my long-term recall, I began my weekly reading session with re-reading page one of the third novelette, The Experiment. Got the usual headache but much quicker. On the bright side, by the sixth page, I was being drawn into the story.

It’s hard to engage with anything with a broken brain so it’s exciting it happened at all!

Books

Concussion Is Brain Injury Crowdfund Over: The Writing Begins

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End of Crowdfund Campaign for Concussion Is Brain Injury Update

Extending my crowdfund campaign seemed like a good idea. Maybe people who’d been thinking about it would use the extra time to make that pledge, to say with their hard-earned income that they believed in and supported updating Concussion Is Brain Injury through PubLaunch. My campaign certainly received more retweets, likes, and shares! People threw their support behind it.Concussion Is Brain Injury

Unfortunately, the pledges just about dried up. And meanwhile, my energy stores dropped and dropped, and my pain rose up. I was starting to get mighty pissed at the pain in my right hip and lower back waking me up every morning, even after I’d thrown everything I had at it one night and managed to quiet it down to almost zero.

And so I hunted around and gathered new sources to prop up my flagging energy. As I write this, even those sources are flailing futilely in the wake of my injured brain screaming, “Uncle!” as in, I give up. No more work!!

I used to have a habit of pushing myself until I crashed. It took me well over a decade to learn how not to do that. This past month has been a blast to that past! But some of these newish energy props are keepers.

Now that the crowdfunding is over and that it will be an Ingram Spark book not a polished book with the Iguana Books imprint — not enough funds were raised for proofreading, distribution, and marketing — although at least in the last hours, pledges came in to cover the full editing costs! — Alright!!! — I will hunker down and focus on rewriting it with the help of Camp NaNoWriMo (it’s amazingly well timed for me this year).

Camp NaNoWriMo 2016

Since it looked right up until the last minute that the funds would not cover structural editing and my injured brain can barely see the big picture of my book — or read it, except with the aid of the Kindle Paperwhite in small chunks — my neurodoc is reading out my Index Card app outline to me.

I began this new method with reading the chapter titles out to him, and the next time we spoke, he read the titles back to me. But now, he reads the Index Cards out loud as I try to absorb. Over and over he reads each card title slowly; over and over he reads any notes on each card with careful enunciation. Nothing happened the first few times, but last week, we focused on the first section of the book, and I began to see. I moved the index cards around, wrote in new ones, and he read them back to me again, starting from the beginning. I added and moved more cards. He took my iPad back and again read them back to me from the start.

Suddenly, my brain quit. Nothing made sense any more. But he asked me if I thought it flowed better, the first section we worked on; I thought so. He did too. He was really happy he could do this for me and that it worked.

On the weekend, I manually copied the work I’d done in the Index Card app over to Scrivener for Windows (their iOS app is coming too late for me) and wrote one of the new chapters. I again reviewed the outline in the app and tweaked the first part of it. The middle to end remain out of my perceptual grasp. But it’s getting there.

And so to the twenty-eight people who backed my crowdfunding campaign: I am writing new chapters and revising the old ones. I don’t know how long it will take me without the full resources I needed, but your faith in me is committing me to finish my book. Thank you!!!

Brain Biofeedback

A Positive Beat in Heart Rate with Concussion Treatment

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It was extremely difficult not to bounce up and down in my chair, point at the screen, and scream to my brain trainer: “Look! Look! 77!!! My heart rate has dropped down to what it used to be!!! Holy shit, man!”

That 77 heart rate lasted maybe a few seconds then it rose up a bit and hung out in the 80s until it finally went up into the 90s. But even the 90s–! Whoa, that’s low for me ever since my brain injury sent it soaring to 120–130. My heart rate likes triple digits.

My brain trainer suggested it dropped into the 70s because we talked for 45 minutes. I’m not so sure. I don’t discount the effect of talking, but we’ve done that before. My heart rate does drop after talking – like anyone’s does – be that a lesson to you too – your heart likes to talk out your troubles and emotions – but it hasn’t dropped that much before. I believe it’s the laser therapy I’ve been receiving for the last two years on my neck and lower back of skull, which includes Meditech’s concussion protocol, that has been the real game changer for me.

Well, it in concert with brain biofeedback, a new, experimental approach to reading rehab, and the stability of the sessions and phone calls with my neurodoc, is what is together healing my brain-injury-created heart problems. I’ll write more on this in my book’s update.

Update 12/04/2016: Forgot to mention LF bar in HRV reached high of 3. I haven’t seen it above 2.5 before. The original goal back in 2012 was 10. A tad slow getting there. 

Brain Biofeedback

Another Piece to Reading Puzzle After Brain Injury

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I met again with the psychology prof who has helped me discover more pieces to my reading puzzle as I work to unravel why I have so much trouble reading after brain injury.

To recap: I have a diffuse injury, and so many areas involved in reading were damaged. But some areas were not. My health care team and I have worked on improving concentration, healing Wernicke’s Area, enhancing alpha brainwaves in the left frontal cortex. I’ve improved a bit. I can read more than one paragraph; I can skim and read Twitter; I can sort of see the edge of the big picture of an article. But I still cannot read a book in order to follow a plot, remember characters, acquire and retain new knowledge — and so I write what I’ve read about to try and help me retain it but mostly because a hard copy is my memory. The question is: which area or damaged areas are the sticking point? What precisely do I need to heal?

Clues came from the EEG assessments the ADD Centre conducted, other clues come from my meetings with the psychology prof. And always after one of our amazing discussions about cognitive theory, neuroscience, and my experience, I come away with a practical suggestion or two.

We began by discussing how the brain integrates information over space and time. (For some reason, I kept thinking about my book Time and Space!) Apparently, much has been studied about how the brain integrates information in space. For example, you look at a cup, your visual cortex sees the bottom of the cup, sees the lid of the cup as related to the bottom in space, and puts them together to create the information that you are looking at a cup.

The brain also integrates information over time. That’s reading! I thought. Yup. True, you see words in space, for they are next to each other or above and below each other on a page. But when you read, you take them in one after the other over time — if you’re a slow reader. If you’re a fast reader, well, it’s a bit more complicated. So let’s forget about fast reading; let’s just look at reading as if we’re a slow reader: one word at a time, sequentially in time.

The brain has a corresponding map of things in space. For example, the upper part of our visual field maps to an area below a sulcus (groove) near the bottom back of our brain. The bottom part of our visual field maps to the area above that sulcus. Yeah, the brain likes to reverse reality. It’s funny that way. That’s why we know a paralyzed right arm means damage in the left side of the brain. Anywho, bits of information in our visual field –- bits of what we see – get mapped into corresponding areas in the back of the brain. But then there’s another area, a little deeper in and towards the cortex or outside of the brain. This area also processes bits of information, except in combination not individually. So two points in the first area become one point in the second area. This is handy. I wasn’t clear if the processing happens over time; it seemed like it happens almost simultaneously. The brain sees both the bits and the combination of bits at the same time.

However, the brain has no corresponding map of things in time. We exist in a point of time. Our brains exist in a point of time. Our brains don’t exist in the past, present, and future all at once. So how does it map bits of information in time?

How does it map reading in time?

And how does it combine words, one after the other, in the way it combines bits of information in space?

We don’t know.

What we do know . . .

From my discussions with the ADD Centre, I understood that reading begins with the back of the brain processing the visual information – the words – then Wernicke’s Area receiving that information and translating the language of it into understandable meaning before sending it on to the frontal cortex where meaning is processed, old knowledge is accessed, new information and old are all synthesized together, and the whole thing stuck into long-term memory. I’m sure that’s a simplistic explanation. The sticking point to my reading problems could be anywhere or everywhere along that network.

After the ADD Centre used tDCS to stimulate healing of Wernicke’s Area, my ability to speak and listen improved markedly. Even though I must still prop up my ability to understand spoken words by watching people’s lips move when they talk, I don’t have to expend so much energy in simply understanding. That means I have more energy to compose and say my reply. Conversation with me is more fun.

But it did SFA for my reading.

And so there must be another sticking point. Early in 2016, the ADD Centre targetted my left frontal-prefrontal cortex (FP1-F3), and my headaches while doing my reading homework disappeared. My ability to organize also began to re-emerge from the dead. Unfortunately, having experienced extreme stress, my brain regressed. I had lost the foundation of relaxed, focused attention in the middle top part of my brain that they had trained in me back in 2005/2006, and we had to switch from training FP1-F3 back to enhancing 12-15Hz in the middle top part of my brain. Since gamma brainwave enhancement de-stresses me so well, we’re simultaneously enhancing it too. Although my resiliency and calmness are returning, unfortunately, my headaches from reading also have. I try not to think about that setback. Anyway, back to my conversation with the prof.

I talked about the effort of reading. This fascinated the prof, for there was no sign of the effort on my face while I was talking. How can I talk seemingly effortlessly yet have so much trouble reading? Well, listening is difficult too. Just because you can’t see the effort on my face doesn’t mean there isn’t a whole lot of conscious hanging on to words as my ears pick them up so that I can follow the conversation. If I want to ensure full comprehension, I have to make a very concerted effort to hear and understand, especially if the conversation is complex like ours was. But if it’s just social chit chat, then I can sort of coast.

In any case, listening is still not as difficult as reading.

Also, talking, like writing is output: both are easier than the input skills of listening and reading. He came back at me with the fact that talking includes assessing facial expressions, body language, monitoring what you’re saying, etc. Only later did I think about the fact that after brain injury, little of that happens, which is probably why we make for sucky conversationalists. But my ability to read faces and body language, to stay on point and not hop around like some crazed bunny, has improved markedly. So just because talking is multi-faceted doesn’t mean it’s still equivalent to reading. I can talk sans caring about conversation. I can’t look at words sans reading without caring about the fact nothing is happening if I do that unless I make myself OK with that (I did for awhile).

I think feeling the effort of reading is like feeling the effort for any ability or skill that’s damaged after brain injury. The brain learns, and while it’s learning skill X, it’s effortful. Watch a child learn to read: their brow is furrowed, their tongue is tucked into the side of their mouth, they mouth words with effort. Then watch an older child read: their brow is relaxed, their mouths may silently sound out words, but they read easier than the early reader because their brain has automatized reading. Only when they come across a new word will you see their brows come together, their lips move in exaggerated caricature and their tongues in wide gestures, several times, maybe even asking a parent or teacher to sound out the word a few times, before they master it. Even then, it may require several exposures to this new word before it becomes part of their effortless reading. Now watch an adult reader: they’re relaxed, nose deep in book, they’re absent from the real world, they’re deep inside the imaginary world, feeling the feelings of the characters. almost physically experiencing the fictional world they’re reading about, relating themselves to the characters, having revelations, learning sans knowing it. Time means nothing. That adult reader exists outside of real time and lives inside imaginary time. They can do that because reading, learning new vocabulary, putting the story into memory and adding to it, drawing out old knowledge and using it to understand the story – all of that the brain has become so good at it, it’s automatic. Anything that’s automatic takes less energy and frees up resources for the brain to do other things, in this case, engage emotions and get into the state of flow. And learn.

Brain injury has taken me from that adult reader to the youngest child, except that I retained my vocabulary. At first, I lost access to much of it; as I heal, my access is returning. At this point, it seems like it’s 100 percent. I know it isn’t, but it’s returned enough to have that façade.

As I talked to the prof and listened to his theories and explanations, I would repeat the concepts or spring ahead with my concepts. This puzzled him: how could I create concepts and understand complex concepts yet have so much difficulty reading? I told him the psychologist who saw me way at the beginning of my injury said that I had not lost my logic or reason, they were only stuck inside and I could still use them, albeit at glacial speed. My speed has increased markedly since 2000, and I have retained my old knowledge. I can access that, especially when conversation stirs old facts back up into the recognition memory zone. Logic and reason and my foundation of old knowledge acquired during decades of voracious reading pre-injury are the reasons I can create concepts and understand complex ones.

I explained the effort of reading and listening is in the hanging onto each word or idea as I move onto the next word. I have to effortfully keep them present in my mind as I add to them. It’s hard work, and it’s all conscious work.

We went on to discuss working memory. Way, way back in my university studies, I had learnt about short term and long term memory. Simplistically put, information goes into your short-term memory; whatever your attention decides needs to be remembered is shoved into long term, the rest forgotten. Working memory is a newish construct to me. I asked him to explain. There launched a rather interesting discussion, the upshot of which is that there may be no such thing as working memory in the brain. It may simply be a psychological construct with no physical reality. What I had learnt remains true.

He concluded that my sticking point must be at the basic elemental level, that is, the level of taking in bits of information and combining them. What if we took that block out? What if we combined those words for me? Pictures do that. It takes many words to describe a picture; but one glance to understand a simple picture or a prolonged glance to understand a detailed picture. In either case, the words are combined for the viewer.

There’s a new genre in town: the wordless graphic novel. The reading is in the looking at each image panel in sequence. He loaned me Cinema Panopticum to see if it would make a difference to my reading, to see how my brain would react.

The other issue I have is speed. I can follow people much easier than I used to, but if they talk too quickly, or when my speech speeds up all of a sudden – ack! – I get lost. I can compensate by either not caring I’m not following them and faking it or by asking them to repeat themselves. I’ve grown clever at being able to ask people questions so that they repeat what they said without it being obviously asked.

He suggested that I could use a podcast app that speeds up or slows down the rate of speech to assess how quickly I can comprehend the spoken word. I can take a passage and note down the speed. Then listen to it for x minutes and record at what speed I could comfortably comprehend it. Repeat that assessment regularly, say, once a month to track my progress.

When I first began my reading rehab in 2015, I had timed my speed in seconds per word. But now I time it in terms of paragraphs per number of minutes. Less work. However, it would be a good idea to time my reading per word every so often. Being able to see if I’m changing or not will give me an idea of my progress.

In the occupational therapy world, writing down goals and ticking them off is how they get those of us with brain injury to see that we are accomplishing things, because things take so frigging long to do. The same with timing podcast passages and words read. It would give me an objective number — those two methods would show me and my health care team exactly what kind of progress I’m making.

Books

Reading Wordless Graphic Novels a Two-Fer for Brain Injury Rehab

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Another day, another six minutes doing my reading homework. I’m now doing two stints (well, one, most days in these last hellish crowdfunding days) of reading homework daily: one, reading paragraphs from an article assigned by my neurodoc and one “reading” the wordless graphic novel the psychology prof loaned me.

I just had a revelation about the latter. A new, unexpected benefit revealed itself.

One of the problems in holding conversations after brain injury is reading facial expressions. My ability has improved markedly, but I still have trouble.
 

From Cinema Panopticum by Thomas Ott
 Today, I began reading my ascribed 8 pages of the wordless graphic novel and immediately hit a bump: I had to spend some time studying the girl’s facial expression in reaction to The Hotel to figure out what she was showing and thinking. I had to study each eye and her mouth to feel like I’d “got it”: fear, surprise, laughter (nervous or fear laughter??). In another panel further on with the masked man, El Macho, I had to do the same again, although his expression was less complicated.

I’m thinking reading wordless graphic novels is a two-fer. I don’t know how rehab formally teaches people to relearn facial expressions because I was not considered to need it (yeah, OK), other than showing us photos of different expressions and having to identify them in the social group at CHIRS …

But I just realized: a wordless graphic novel helps us relearn to read a book and to read facial expressions in a natural way. Not in a you-need-rehab-your-brain-is-fucked way. The rehab way is socially isolating and reminds us of the slog of relearning we have to do. The natural way is more fun, lifts the ego, and makes us feel part of (trendy, youthful) society because other “normal” people read graphic novels too.

Update, 4:25pm: Another bonus of the wordless graphic novel is no associations with the past, no mourning, for I’ve never seen one before. No memories of what it used to be like; no grief because there’s no mourning a lost skill I never experienced. It doesn’t look like a comic book, so no reminding me of that loss too and thus again no grief. I suspect that would be true for most people with brain injury because the wordless graphic novel isn’t a commonly known genre. Yet.

Books

My First Talk on Writing After Brain Injury

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For years, I’d overheard conversations about CHIRS at BIST meetings but didn’t exactly know what it was, other than it seemed to be a place where people with brain injury hung out. When CCAC discharged me – for arbitrary time reasons not because I no longer needed community care – on the contrary I needed it badly – they discharged me to CHIRS. Like anyone with a brain injury, I don’t do well with change. It didn’t help that I felt like I was being dumped by the government and medical establishment into feel-good-while-you-rot-out-of-sight-of-us-the-people-who-have-jobs-and-power-and-so-matter-unlike-you day-program denizens.

My CCAC therapist eased me in, coming with me to the assessment and my first CHIRS group. It took me awhile to adjust, but I came to look forward to seeing the staff who run the group and my fellow inmates, uh, I mean the clients with brain injury. (Really! Some days you feel imprisoned in your injured brain.)

Unlike the others who knew other clients, many of the staff, and the way CHIRS works, I only knew my group at CHIRS. I bypassed the noisy central meeting hub because it overwhelmed my senses.

But I soon learnt that everyone there was kind, welcoming, thoughtful, generous.

The point of CHIRS, unlike CCAC or Cota, is to provide services to people with brain injury indefinitely because they understand that it’s an injury that never goes away and its needs ebb and flow and never leave you.

The CCAC – and the clinics and doctors who see people with brain injury – practice of seeing clients for a pre-determined period of time instead of in accordance with health needs is medical malpractice IMHO.

Anywho, I say all this because after I decided to update Concussion Is Brain Injury, I got to know CHIRS even better.

First, the staff wholeheartedly supported my crowdfunding efforts, unlike the hesitant support from BIST (rather ironic, since while individuals are totally, fully behind me to my eternal gratitude, others seem more concerned about optics or whatever is bothering them than the fact I’m writing this to help the members. I’m certainly not killing myself over this book for my benefit!) Then, I was introduced to a staff member who wanted me to present to the club – that noisy central meeting place I usually avoid!

CHIRS wanted me to talk about writing before and after my brain injury and about crowdfunding Concussion Is Brain Injury. I was told that a couple of CHIRS clients want to write but had felt they couldn’t because of their injury. They needed to hear from someone who had given the middle finger to being told you can’t write anymore and had spent years relearning to write and has now got a few novels under her belt plus is working to try and update her book on brain injury.

Sure, I said.

My injury has given me the ability to speak publicly sans embarrassment or nerves. As I told the group, the person who existed before the brain injury, well, her red face, shaking legs would’ve telegraphed her desire to hightail it while speaking publicly. Me: am loving it. She also would have been reading her speech verbatim. Since I cannot read and publicly speak at the same time – other than reading one of my chapters – I must prepare well enough to be able to remember it.

Fatigue got in the way.

I got my main points down, thought about relevant details, but trying to review it close to presentation time – Oy! Not happening. Words pinged off my forehead like it was made of rubber and laughed at me for trying to read them.

So great relief when I realized the man in charge would ask me questions throughout my talk. All I had to do was answer them! I can do that!!

As I’d anticipated, club members wanted to ask questions throughout my talk. They politely raised their hands not simply blurted out the questions, although I could have handled the latter, being a member of the say-the-thought-before-it-disappears club.

Question: Did you write better before your brain injury?

Answer: My mother says I write better now.

Question: Will you remember this in 3 weeks?

Answer: Ummm, broadly, yes, but not details (thinking: smart question; only someone with a brain injury would think to ask).

Question: What if you get only $4,000 in pledges for Concussion Is Brain Injury?

Answer: Um, without marketing funds, which $4,000 won’t cover, no book sells. I’ll try but …

Question: How do I know what I’m feeling?

Answer: (This question got to me, for I hadn’t heard my own agony reflected back to me before.) You write until you see your emotions come out onto the page. Your arm and hand will probably be killing you before then, but just keep writing.

Question: What’s your name?

Answer: Shireen. (Hey! It’s an expected question so don’t be shy asking, and I don’t mind answering a gazillion times!)

I had a lot of fun. The guys were welcoming (most of the club members there were men), they had a seat all ready for me, but I chose to stand because, yeah, it’s tiring, but I can speak better that way. They had the computer ready for me too so that I could show them my and other relevant websites. They got a microphone so if my puff power faded, I could still be heard by the large crowd all the way to the back.

As I spoke, I could feel the energy change from polite attention to enthusiastic engagement with what I was saying. It fed me, and I left buoyed up by the last thing one writer said to me: what he took away from my speech is to never give up. He thanked me.