Accessibility of all kinds is pitiful on Toronto’s TTC.
Wednesday, August 31, 2016 at 4:00pm Please join us at Yonge and Bloor To protest this blatant injustice towards our most vulnerable citizens.
When you protest the TTC’s abysmal treatment of the disabled, we all win!
D!ONNE Renée is the organizer behind this event. If you have any questions, want to throw your virtual support behind her, or have comments, reach out to her via email or on Twitter at @OnElectionDay.
The announcement reads:
Accessibility is a Right — Not an Option
On Wednesday, August 31, 2016 – Between 4pm – 8pm, on behalf of community and Public interests, an #AccessibilityNow! TTC campaign/protest will take place starting in the Yonge and Bloor area to raise issues concerning discrimination based on disability, barriers, and ableism in transit and its services.
The Accessibility for Ontarians with Disabilities Act sets out the interpretation for “barriers.” Too many barriers exist within the TTC. It is not acceptable to take a “minimum/at least” approach in improving access for all. The standard should be a model that reflects an equal to or greater than the access that is currently available, model. The equal to or greater than the access that is currently available model is a model of equity and equality.
People have a right to access public systems; in this right, people should feel that they have the option to be free to choose whether they access those systems or not. We are all not free just to be.
Approximately 35 out of 65 subway stations are “partially accessible,” on good days. Functioning equipment = good days. “Partially accessible” means that all patrons don’t have the option to access the system for lack of elevators, Braille information and helps, proper signage (large print, clear, large-enough digital boards), functional escalators, inaccessible entrances/exits (now including Presto Card gates and readers) to subway stations, buses, streetcars, and extraordinary Wheel Trans wait/scheduling. Plus the TTC worsened accessibility when they began replacing the names of Toronto’s subway lines with confusing numbers.
TTC (and transit across Ontario and Canada) must be proactive in its operations and provide equality in its services and not discriminate against anyone, including people with disabilities and/or people requiring accessible access in order to use its systems. TTC was able to find money to implement Presto Card systems into its subway, bus, and streetcar services even though the gate systems being used at subway and bus stations are all not accessible; but TTC seems to be unable to be actively proactive in ensuring that all areas of TTC are fully accessible.
While this event will take place in downtown Toronto, the issues and concerns being raised affect all of Ontario and Canada. We want everyone to have the ability to travel independently, or in group, as we so choose.
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.
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.
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!!
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.
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.
The psychology prof I meet with occasionally to discuss reading suggested an experiment: read a wordless graphic novel. He loaned me Cinema Panopticum by Thomas Ott. We had been discussing how the brain takes in information one word at a time and then processes the same bits of information but combined in another area. The prof noted I don’t have trouble creating or understanding concepts; instead I have a lot of trouble ensuring my brain absorbs each bit of information — each word — and putting them together, depending on the complexity and length of the material.
What if we gave me something where the words were already put together, so to speak? What if we bypassed the basic problem of getting my brain to absorb each word and to combine the words? They say one picture equals a thousand words. Well, maybe in a wordless graphic novel, one picture isn’t equal to a thousand, but it sure is equal to many, maybe even one paragraph. Would that make it easier for me to read?
Today, I am sitting down with Cinema Panopticum to find out.
It’s a large-sized book I can lean on a cushion while I read it. Each page has a black background, and each panel is drawn in grey scale, like a pencil sketch. Fairly easy on my eyes, and fairly easy for me to perceive. Some panels are on the outer limits of how much detail I can comfortably perceive.
I used the same routine as for my regular reading homework: begin with three minutes of deep breathing to relax me and prepare my brain. Wear my reading glasses. Set the timer for 10 minutes. Begin.
I wasn’t sure how one “reads” a wordless novel. I have a tendency to look at images or photos quickly, and that’s what I did with the first panels. The first part of the story is also fairly familiar to readers: a girl wants to go to the fair, she only has five coins, all the rides cost more than five. But I suddenly realized a headache was coming on. I checked my timer.
I remembered I’m supposed to take three deep breaths between each paragraph to ease any burgeoning headache or prevent one. But what is a paragraph in a wordless graphic novel? A page of panels? Two pages? Or is it better to go by time?
I took the three deep breaths but didn’t recall out loud. I read for another minute and a half. This time I looked at each panel longer, and a few of the panels I studied carefully, like I was the girl trying to figure out what she was looking at as she explored the fair. The headache began to encroach again, and I was at the end of the first section. I remembered this time I’m supposed to recall out loud. I spent another minute and a half recalling out loud section one — or is it chapter one? (no, the description of the novel says it’s the intro to four novelettes) — while I took three deep breaths.
I considered continuing on because I had been reading for only five minutes, but I had a small headache, and I was tired. Better to quit while ahead than try to push it. I’m looking forward to reading novelette one tomorrow.
This floating piece of metal is huge. It dwarfs the Redpath sugar plant, which is no tiny building but itself an edifice on the waterfront where people gather to work and play, enjoy life.
As it is with that ship, so it is with reading.
Reading is a huge cognitive process, a monolithic problem that’s a part of, yet is bigger, than the injury of the brain that sits between you and the world.
It looms over the enjoyment of life.
Yet most people can’t see reading as a problem; they talk about that monolith as if it’s not a lake freighter but a tiny sunfish dancing on the waves.
It’s taken me years to first acknowledge that I could not read then to acknowledge the enormity of the problem then to accept it wasn’t going to go away and finally to nag and nag nag my health care providers to truly help me.
My neurodoc began back in January; CCAC said recently, OK, let’s connect you with an agency that helps people learn to read, preferably with one of their ex-high school teachers since it’s the long-form, cognitive aspect of reading you struggle with; and now after the ADD Centre reassessed me this past week, they are going to use my neurodoc’s reading methods with their materials in concert with brain and heart and breathing biofeedback protocols to heal what my EEG reveals as the reading blockage.
I am jumping up and down, screaming in delight!
For the first time, all my health care providers are working on the same issue to complement what the others are doing, with my neurodoc the “non-expert” in reading leading the way. Thank God.
For once I do not feel like a human being being pulled in three different directions as each provider works on totally different issues and don’t talk to each other so that they think I’m only working on what they are doing, which kind of leads to awkward situations where I get questioned on an area one of the others is working on as if I’m not, which then leads to my mind going blank as I grapple with this broadside so that it really does look like I’m doing nada when I’m not. And yes, I’m having trouble blogging and writing too. But I digress.
So my neurodoc is continuing to improve my stamina so that I don’t fatigue to the point of needing a nap and so my will headaches go away. CCAC will hopefully find an ex-high school teacher at a reading-rehab agency who will help me ensure I keep up with my homework, especially in light of my recent out-of-the-blue-forget-to-read issue, and perhaps offer other remedies to restore my reading, maybe even read rhyming poetry to me. And the ADD Centre will treat the damaged areas that are probably responsible for my reading problems while also working on strengthening my recall and being able to spot and understand subtle meanings under timed conditions.
I’m not in the mood for writing. I finally trundled over to the vampire clinic, starving from over 14 hours of fasting (I kind of miscalculated the time To stop eating). This was a triumph. It took only six *cough* months and a few reminders from my neurodoc to get meself to the blood lab so that my GP can monitor my glucose, lipids, and Vitamin D.
But you know what it’s like. First, winter. Who wants to schlep through the cold and snow to shed layers so that your elbow can be jabbed. And then there’s the whole cold and flu thing. Then, well, I’m off on vacation. No way getting pricked before and after. Gotta save up my energy. Then there’s the whole I-hate-needles thing and the pain . . . Ouch! Although I must admit that never stopped me going before 2013. I just complained, dragged my mother along, and went. Finally, I just forgot.
But eventually, my neurodoc got me emotionally stable enough for me to endure the test because at the end of the day, the real reason I wasn’t going was I have too many things on my plate, too many emotions waking up and swirling like tornadoes in my head, too many memories of going to too many medical appointments alone having to advocate for myself alone, that I couldn’t tolerate one more thing. And overcoming my brain-injury-induced initiation deficit was beyond me even for the cause of better health, the one driver normally stronger than my deficit.
I guess this is living with PTSD, where even a simple battery of tubes sucking your blood out is too much.
But the advocacy never ends. I had to get my Vitamin D tested. It was too high last time. My father had told me OHIP will cover the test in that case. Oh. You mean, I don’t have to pay $50 for an important, preventative-medicine test under our free medicare system? Nope. You just need the code.
I asked my GP’s office. They thought it was free. Um, no. My GP didn’t know the code. My neurodoc didn’t know it offhand. Since I’d run out of time and knew if I didn’t go on the early morning I’d decided on — and of course I made all these calls last minute — it’d be months before I tried again.
So in I went to the blood lab and asked about this free Vitamin D test. They looked at my lab requisition form and said, well, first off this requisition has expired. Yes, folks, I had stalled too long. Oops.
Thanking the gods I have an iPhone and don’t have to hunt for a payphone or beg to use a phone anymore, I prayed my GP’s office was open. It was. His very sleepy-sounding secretary answered, and she, the wonderful woman that she is, faxed a new form to the lab with the magic words on it — “Vitamin D insured.”
That’s the code to getting this important test covered by OHIP. Now my docs will know. And I await my test results . . . well, assuming I hurdle my next internal barrier, seeing my GP to hear what my blood has to tell.
Hypnotism is a strange, scary process. You put your mind under the control of another’s mind. So you gotta really trust that other person. I didn’t. But after an old friend suicided recently, and my fragmented memories wouldn’t let me remember her properly and were also disturbing my body’s humours (such an old term but it just fits), I decided to give it a shot, to see if my memories, and one in particular, could be pulled out and put back together again in my consciousness.
I had discussed hypnotism with my psychologist years ago and again recently with my neuropsychiatrist. They had said I do have ultimate control; we don’t necessarily know how it will work out until we try because each person is different; the memories may not be retrievable for a number of reasons; and my neurodoc stressed: “the wild card is your brain injury — it may have irretrievably damaged your memories and may affect being hypnotized.” I had one last discussion with him about the risks and benefits, and a promise he would call me back if I left a message saying, “Help! My mind has freaked out!”, before I sucked in a deep breath and went for it.
I have had a lot of experience – a lot! – with deep relaxation methods, guided relaxation tapes, deep breathing. So, for me, the relaxation part was old hat. But before he began the process with guiding me through deep relaxation, he asked me a number of questions about when, where, and what I could remember about the humours-disturbing fragment. My answers became cues he used when asking me questions about the time I wanted to recall. Once I was in an apparent hypnotic state, he asked me to go back to that time and to speak what I could remember. I said nothing. He asked me to describe my friend. I began.
From then on, he would ask a question and I would answer. Then I began to spontaneously say things as if that young me was speaking through the me of today or my friend was speaking through me. Just short sentences, but it was . . . odd. He wrote down everything I said. He told me later he does this because usually his patients cannot recall what they remembered while hypnotized. When I travelled back in time, my perspective shifted from that of an outsider looking back from way in the future to one of being there, of sitting where I would have been sitting and seeing my friend in the way she probably was at that time. Details of what she said, what I saw in my mind as she described things, what I felt seeped out. Bit by bit, the memory was rebuilt.
And then suddenly, my eyes snapped open.
My neurodoc didn’t notice. I said, “I’m back.” He was focussing on his notes and on the questions he was asking me, not on my face. Sheesh. Funnily enough, I was able to answer the rest of his questions about how the event ended and a final detail of the event as if I was still hypnotized. Except, it turns out, I hadn’t really been hypnotized. When he realized he didn’t need to bring me out and what led to me popping out (an internal feeling, not an external distraction), he said I was probably lightly hypnotized. Lightly is fine with me.
We went over what I recalled, and he filled in the gaps with his notes. Then I exclaimed: there’s one thing that really resonated that you forgot. Well, he had written it down, but he hadn’t realized how much it had been screaming in my mind.
I began to feel worse and worse after the session, like a great big pit had opened up in my stomach and was trying to swallow me up. The pit wasn’t related to me – it sat on its own unconnected to my head. It was related to my dead friend. So I called a current, new friend, and we talked and talked until I felt better.
I learnt a few things. I learnt I had absorbed my friend’s memories and emotions related to some of her childhood events into myself. They had become one with me and were causing a disturbance in my humours. Now that I know them, I can separate their strands entwined into me and toss them out with my neurodoc’s help.
Now that I’ve undergone hypnotism once, it doesn’t feel so scary. I will probably do it again for memories that won’t reveal themselves to me but are bothering me deep inside. As my neurodoc said: despite the fact I was only lightly hypnotized, I was still amenable to the procedure.
I’m not often told it might be good to avoid Twitter or to give it a break, but when I am — and when others with brain injury are — it’s by people not on Twitter or who have a lurking-only account. And who don’t know or understand how I use it.
They’re unhelpful because they don’t understand how Twitter works. And so they advise the blunt instrument of total avoidance instead of helping me or anyone with brain injury avoid the “negative” while allowing us to still play in the fun social sandbox.
One reason us people with brain injury are told to stop is because of “oversharing.” This is part of a larger discussion about our cultural shift to emoting more in public, to creating closer ties even with people we’ve never met in real life, to the trolls among us and how to protect ourselves from them. But the oversharing I’ve seen people with brain injury are criticized for is nothing compared to what some non-brain injury people do. I think the advice to us in this case smacks a bit of the patronizing attitude so systemic towards people with brain injury. Talking out consequences but leaving it up to the individual to decide if they can handle it is way more respectful than telling them stupid stuff like, “what will your daughter think?” Maybe their child will realize their parent is a suffering human and learn some compassion.
Another reason given to avoid it is when we’re bothered by tweets from a certain individual. In that case mute block report that individual is the better option, and I’ve written about that before.
Another reason can be overload. This is a valid concern. We people with brain injury are prone to sensory and informational overload. Couple that with impaired ability to stop, and you have massive energy drain. Years and years ago, I began to turn off the computer and go offline Saturday night and not turn anything back on until sometime on Monday (very occasionally Tuesday). That broke any addictive cycle that had been building up over the week. It also gave me the rest I needed.
The iPhone has complicated things for me because it has apps on it that I find restful or distracting. It is a computer but not a computer. It’s my second brain; it helps me function and relax. But the iPhone has the ability to connect to the online world through its data connection, and with the phone plan I have, I don’t worry about data costs. Deadly!
Worse, brain injury tends to kibosh self-control and habits are hard to keep.
But I’ve held this habit for so long that I don’t forget it, like all my other ones. And if I do sneak online, this habit keeps me from not participating. One complicating factor is I do need a data connection to message people — messaging is the new phone calling and, frankly, a lot easier to keep in touch with others no matter one’s schedule. But I’m not exactly a social butterfly anyway.
And sometimes no matter who you are, just like we all need a vacation from work or from family, having an annual or every-four-months week-or-two-week-long vacation from Twitter or Facebook is a good way to recharge the social batteries.
But for day to day, instead of wholesale avoidance, the health care provider should be suggesting:
Focus on your Twitter list of close friends.
Just look at your hobby list.
Muffle the political tweets that are sending you ballistic until you’re ready to get back into the game.
Follow your favourite Twitter chat and then turn Twitter off till the morning.
But they cannot unless they use social media. Just another reason why the divide is growing and causing friction between the patients on social media and the health care providers and friends and family members who are not — to the detriment of the patient’s social and emotional health.
A week after I got back from England, my neurodoc called me up and gave me my new reading homework. Same regimen as before: read two paragraphs after doing the skeleton, read out loud and slowly enough to avoid a headache and to enhance accuracy, and read every two days.
I did my homework one day.
It isn’t bothering me I’m unable to get back into it for whatever reason, maybe because I’m only now really returning to my routine and because I’m so angry at the contrast of my life here and what I glimpsed in England as could have been if not for people’s rigidity around technology and accommodating my brain injury needs. It is liberating and energy enhancing not to have to explain, defend, navigate.
My fatigue has ratcheted up since I got back.
My neurodoc said he’s brainstorming and working hard to try and figure out how to get me back on the therapeutic track. I feel like saying, good luck with that. But I think he will succeed.