Yeah, I know, faith healing! Who believes in that charlatan practice, eh? Well, it was central to Christ’s ministry and to the early Christian church. But even back then, the elders warned of false prophets, the need to discern between those who genuinely give themselves to be a conduit for the Holy Spirit and those in it for personal glory and money. Today, we also have the skepticism of science and atheists who consider themselves the only rationalists in Western culture. Atheism is the smart way to think; faith healing is akin to, um, well silly, non-rational people, eliciting a polite rolling of the eyes, or with those Christians spewing invective and literal interpretations of spiritual teachings. But many of us, especially those of us from ancient cultures believe the material is only one dimension of a multidimensional universe, where the spiritual is a dimension equal if not more powerful than the material. Besides, my mother’s friend had received a lifting of her spirit when she had gone in search of healing for her cancer, a lifting that no human could give her. That alone was worth the free price of admission to me when my mother and her friend suggested it.
I’d never been to one before. My sole exposure was what I’d seen on TV. This was different, the people looked like the whole of Toronto: skinny, rich WASPs; Italians from Woodbridge; down and outs in their donated unwashed clothes; young women bringing their Muslim co-worker friends; strong mothers bringing their fragile adult children; people from every continent of every size and age, sang, clapped, and waited together for the service to begin. Basically, Toronto showed up.
The man we waited for began by saying the Holy Spirit decides how the service will go; so he cannot say how long it will be, what kinds of manifestations will happen. But no matter if you receive 100% manifestation or 50% or none, you will all leave with a healing of your spirit, he exclaimed.
That last sounded like a cop out – a way to keep you believing if you don’t regain your hearing, aren’t healed of your cancer, can’t walk again. But the man was firm: he who touches you is not the one who heals. That’s the Holy Spirit. And as I learnt later: the experience of your spirit being relieved of its burden in a way no physician, psychologist, brain trainer, or mother can do is –
Anyway, when I was near the front, he walked across the floor to me, his fair face and light eyes fixed on my face. He asked why the cane. I told him. He swiftly took it from me, saying, “You don’t need this.”
He asked where it was from.
“My Dad gave it to me.”
“He doesn’t need it anymore?”
“Oh, no, he’s OK,” I replied lightly. He and everyone laughed. I told him why I was there: PTSD, reading, brain injury. He was more interested in my eyes. He asked me about my eyesight.
“Oh, it’s OK,” I said just as I realized he was looking directly into my scarred eye. I hadn’t told him which eye was good and which bad. It felt like he was examining my retina with a telescope. Very strange. So I added: “My retina of that eye is scarred, and my macula doesn’t work. But I came to heal my PTSD, reading, and brain injury.” My mother said I asked for healing of my writing too. I don’t remember that! But that would be cool too, being able to write throughout the year not just during NaNoWriMo when I receive the initiation and organization kicks I need because I don’t have them in my injured brain.
He told me to raise my arms with him. He asked for healing for the swellings in my brain (swellings?), the lesions here and there in my brain (like many others, I can feel them when I think about my brain), the traumas, my eyes. He paused. Fear!
He touched my face and told me to walk. Walk? Without my cane to keep me balanced among the cacophony of sound and movement?
He called me back.
“How did that feel?”
It felt exactly like when my brain would improve in a big leap and immediately adjust to that improvement; only hours later would I realize that only the day before I couldn’t think like that or listen like that or do something. (Healing sans instant adjustment was like when my speech would speed up and I would go, hey, wait a minute I can’t keep up! It would take days or weeks for me to adjust to faster speaking.)
He told me to walk quickly. Um, walking was one thing but quickly with my eyes and brain not communicating in real time, with my brain unable to keep up with my speed of movement? That would send me over.
But his sureness that I could sent me walking as quickly as my legs could go.
I didn’t fall over or lose my balance. Not even a hint.
Sweet. I was grinning, and everyone was clapping.
I left feeling better in spirit. The burden of the social isolation, the unforeseen humongously long recovery time, the months of sudden dependence, lifted too. Although stress has returned, I remain better able to function and bounce back, much more so than before the healing.
People noticed a difference in my spirit. I noticed my legs were solid and my feet sure on the ground even though my head spins like a dryer when I walk faster than my brain can process visual information (or even when I get nauseated on the TTC with the train noise and yawing buses). The volume from my ears has been turned down too, so I no longer need earbuds to protect me from auditory overload … for the most part. Noises behind me from footfalls to subway trains to bikes still make me pause as my brain tries to process and locate and identify. But traffic looks normal again, and thoughtless Torontonians are annoying not a danger to my health and well being.
And my visual field expanded. I see more and more clearly. I am practicing so I won’t lose the momentum. Like with human-made healing, if you don’t practice or exercise, you’ll lose it. Unfortunately, I got rundown from NaNoWriMo writing daily and a cold. But I beat the virus quicker than normal: 2 weeks. Recovery of my energy, stamina, thinking, clear vision continues: I’ve regressed a bit. (It’s taken me a month to write this post.) But my legs remain solid, my feet sure of their footing, just like right after the faith healing.
Well, it had to happen some time. I’ve restarted two-thirds of my brain-injury-care appointments. As of this past week, I have returned to using the TTC on my own – solely to get to brain biofeedback. So I’m not exactly using the entire TTC on my own, just one well-practiced route!
As expected, it took me a lot longer to get there by myself than with my CNIB orientation mobility trainer, even when he was shadowing me and out of sight. My slowness wasn’t just because it’s scarier going solo, it was also no one was around to push me to keep going: I’m dizzy? Sit! Brain feeling the effort? Sit! Had enough? Sit! Or lean against a wall since benches aren’t plentiful in this progressive city of ours.
One of the nice things about the boomers getting older is that benches are at long last popping up on some streets. Still too few though.
It took me double the time to walk to the ADD Centre from the TTC sans my mobility trainer; sooo about, uh, hoo boy, a bazillion times slower than prior to my eye surgery. Well, OK 5.4 times slower. On the plus side, last week I was only 1.2 times my normal speed in quiet, now-familiar areas where I’ve practiced my walking many, many times. And this weekend, in the same quiet areas, I’m pretty much at my old speed for about 15 minutes of walking sans any rests and except for crossing streets.
Anyway, my brain trainer told me when I asked that my CZ SMR brainwaves have dropped since June.
SMR: sensorimotor rhythm or 13–15Hz, the foundational brainwave in the area that loops from the outside of the brain to the critical thalamus deep inside. They are the brainwaves of relaxed, focused attention.
Social isolation takes a toll on the brain. It should be fucking obvious to every human being who looks beyond their navel, but apparently not in North America with its cult of busy-ness and every person should shut up about and look after their own disability. Isolation is either chosen (some people have been taught it’s safer emotionally-speaking to be alone) or imposed when family, friends, neighbours, health care workers take zero initiative to reach out to the person who’s lost their independence to ensure they don’t lose their biologically-critical social life too. Small towns and England are better at reaching out or as one community worker put it: reaching in. Reaching in to the hurting person, the suffering person, the ill and injured is how we prevent brain damage from social isolation. But not even churches in the big city of Toronto are good at it, preferring to wait for parishioners to call up, nag, beg before fellow congregants can look away from their look-how-compassionate-I-am-I-volunteer-for-the-homeless (or African communities) Pharisaic stance to spare a glance at the suffering in their midst and do something about it. The ones who are most invisible are the ones they should be reaching in to. But that takes not following the disciples to town but following tired, hungry Jesus to the woman at the well – compassion plus effort, don’t you think?
“@ShireenJ: Guest on @CBCOntarioToday: “As a community, it’s OUR responsibility to be reaching in.”As person w #braininjury rarely exp’d that. WldB nice”
Anywho, my brain trainer and I have re-established the routine of 30-second assessment, 3 minutes of HRV (heart rate variability), and two screens of biofeedback: inhibit delta-theta (2–5Hz) and busy brain (24–28Hz) and enhance SMR (12–15Hz) and if possible gamma (39–42Hz), ie, gamma when we can use the computer that allows for two-display biofeedback screens. My muscle tension was above 2 this past week but came down nicely, as did my delta-theta.
I’m pushing my neurodoc and the ADD Centre to see about treating my reading difficulties better. To that end, we did a 3-minute assessment over Broca’s area at FP1-F3 and 3 minutes at the corresponding area over the right hemisphere at FP2-F4.
It’s been suggested to me that getting a diffusion tensor imaging scan would aid in finding out exactly where the injury broke my reading cognition. A DTI will show the health of my neural networks. The problem is that whereas out west they offer that MRI-variation scan clinically, in Ontario they do not. The Kathleen Wynne government doesn’t pay for it clinically, apparently preferring to spend health care bucks on things like more administration since 39% of community care going to admin is not high enough and managers are way more important than doctors, nurses, therapists, and scans, don’t you know.
So we may have to continue to guess the best we can and wing where to treat the brain while continuing to practice reading. Meanwhile, my neurodoc isn’t into facilitating communication since medicare in Ontario doesn’t pay for phone calls, emails, texts, and he doesn’t believe in answering questions left on voice mail or even acknowledging receipt of any communication. So tough shit if you keep forgetting to ask things when see him, can’t read notes to help you remember, and email (or in our security-conscious world, text) is only way you can express yourself and actually get it done. Gah. So fed up with it all.
Walking improvement continues in sudden leaps and expected plateaux. After first two weeks of October, I suddenly improved in speed by about 12% to at times 18% in addition to walking smoother, more competently (as in normal gait, firm footfalls, balanced bilaterally most of the time). At some point in first three weeks of October, nausea disappeared entirely (except for during a needed foray into the Eaton Centre – gah!). And dizziness dropped a lot. It helps that I’m wiser in managing my activities so as not to bring it on.
I’ve discovered though that using an SMR audiovisual entrainment session about 4 hours before taking the TTC to my brain biofeedback or an SMR/Beta audiovisual entrainment (AVE) session before my walk makes a huge difference (that is, entrain 14Hz brainwaves or 13.5/18Hz ones). I am smoother in my walking and can walk quicker sans getting dizzy.
I’m working on improving my speed and stamina, and these sessions definitely help me.
This weekend’s walking practice was done sans using a session beforehand. My head felt it. My stamina was better than last week, but I became dizzy at the same speed of walking as last week. And my head pretty much stayed dizzy-fuzzy-fied because, naturally, I didn’t slow down much, except when on a main street and crossing intersections. I haven’t sped up on the latter in several weeks; crossing streets on my own for the first few times is even slower. But everywhere else . . . Faster, faster! So much for being wiser. But I was on a mission: to improve my stamina at a decent speed (which, by the way, is still slower than pre-eye surgery but not by much on familiar streets).
I realize now that my experience on Yonge before my biofeedback treatment was also because that day I hadn’t used an SMR session beforehand. My brain was not as prepared to handle the plethora of visual and auditory stimuli as it usually is. I’ll have to ask the ADD Centre if it’s OK to do an SMR session before or if that could overload my brain with too much work.
After I realized that the medical model doesn’t provide treatment for brain injury (strategies aren’t treatment, people), and I began looking for ways to repair my brain, I have been pretty much overseeing the big picture of my care. No GP, no specialist has done that in the last decade or so. And before that, it was really monitoring and prodding me to go figure it out. After an emotional shock about 3 years ago, I stopped being able to do that. And so between that dropping of the baton and the shock, I haven’t progressed nearly as much as I could have because no one took over overseeing the big picture of my care and guiding me on my non-pill “medications” aka AVE and CES (cranioelectrical stimulation) as my needs changed, not even my neurodoc. When it comes to brain injury, 100% of the doctors I’ve met consider it too much work to read up on, consult, learn about my kind of injury and/or how to use AVE/CES or how to oversee the totality of my care.
I realize now it’s a pipe dream hoping for my neurodoc to understand and oversee my entire brain-injury health care picture (I leave out of the equation my other medical issues, though he is currently looking for a blood pressure specialist [at his rate, he may find one in 2018]). But I’m feeling stronger recently. I was told it takes 3 to 6 months for a person with brain injury to recover from general anesthesia. As of this week, it’s exactly 6 months. It pretty much sucks to have no one to talk to about or rely upon my entire brain injury treatment and PTSD symptom picture, but at least I’m starting to feel like I can take that burden back on and there are still and always have been people I can talk to about bits and pieces of it. I just have to be able to knit all the bits in my mind and not overdo it like I did back in 2006. It helps that I am no longer being plagued by how much work time I’m losing to my injury. At this point, I’ve lost more than half my prime working years to it, so who gives a shit anymore?
Back to biofeedback. I was ready! Well, that was the theory. We’re easing me back in at once every other week schedule.
So far, my CNIB orientation mobility trainer has guided and walked with me to it for less and less of the way each time without me actually attending an appointment. This week he shadowed me to my appointment at the ADD Centre, and a friend met me afterward to accompany me back along the most difficult part of the route. Of course , we had coffee and a bite to eat first to thank her for giving me her time and to feed my tired brain. After the journey up and biofeedback, it was screaming: “Glucose! I need my energy refill!!”
The journey there was as expected. I made my familiar way to the meeting point with my CNIB trainer. There, he restated how it would work: I would take the subway and walk as if I was on my own, and he would follow me, close enough to keep an eye on me but far enough for me to feel as if I was alone. He would catch up at the ADD Centre, where we would debrief.
Deep breath, and off I went. It all went as expected – until I hit Yonge Street. My brain went AAIIIEEEE. Let’s stop.
Um, what the heck?
It was like the earlier days when I walked slowly, had to pause a lot, hesitated when people or cars passed me by. And the noise! It was like God had turned the volume up!!
Why are there so many dump trucks going up and down Yonge?!!!
Yeah, I know: condo building boom.
Brain overloaded, I had to sit down. Whoever decided to put benches on main streets, thank you! (And can I say, what took you decades?) I eventually realized he had usually been between me and traffic; this was the first time my field of vision encompassed all the traffic, all the movement on the busy sidewalk. Gulp.
At our debrief, he noted my difficulties. But pointed out that I’d made it. And I’d done all the right things when crossing streets.
My CNIB trainer left, and my biofeedback trainer came and got me.
Since my brain’s resources were eaten up by the journey, I’d become emotionally flat. That hasn’t happened in awhile. And because it had been three months, it took me a few seconds to remember with each screen what I was supposed to do.
We began with a three-minute assessment at CZ (top middle of head). I usually keep my eyes focused on the dancing brainwave frequency bars, specifically gamma ones, at the bottom of the screen. But that made me dizzy, so I shifted my gaze to the top of the software window. After that, came 3.5 minutes of HRV (heart rate variability). That was a shock. First my heart rate was in the 90s. 90s! I’d been away for months, and my heart was not thundering away in the 100s from lack of training. Whoa! All the training I had done was having a permanent effect?
The second shock was the heart rate curve. It was going up and down smoothly in sync with the breathing curve, with few of those jagged hills that are too common with me. I don’t recall my heart rate curve looking that smooth before …
I’ve been using the home light therapy unit every other day, according to Meditech’s instructions to assist my recovery. I’d noticed after I’d begun laser therapy years ago that my heart had begun to improve. Maybe doing the neck lights much more frequently lead to this effect???
We began training with the sailing boats in their psychedelic race courses, the screen I hate, because I was still fresh. Three minutes. It took me a bit to remember which boat was to win (the one that sails when I enhance SMR brainwaves, duh).
The next screen was the two-display one. So awesome and weird being able to see both displays at once, even if the one on my weak side is vaguer than the other.
There are so many graphs in the two-display one, it was confusing even before my surgery. My trainer told me: focus on the triplane only. OK. It took me awhile to get that triplane to fly. Apparently it was my gamma brainwaves causing it to sit there. My trainer adjusted the threshold down from 1.5 to 1.4 (it had taken years to get it up to 1.5, sigh). When I manage to generate enough gamma brainwaves to go above the threshold, the plane flies. Well, OK, it’s more than that. To get it to fly, I also have to inhibit delta-theta, keep my muscle tension down, and enhance SMR. No biggie. Ha!
We finished with 10 minutes of writing. I didn’t write as much as I usually do … I think my writing is returning … But it’s still difficult. Maybe all the NaNoWriMo talk on Twitter will remind my brain what it’s supposed to do. And tell it, it can!
Almost three weeks ago, we came to the next phase in my return to independence: riding the bus alone. Eep! “A round trip,” my CNIB orientation and mobility trainer replied, “you don’t have to get off — all you have to do is sit and not throw up!” Um, OK.
My CNIB (Canadian National Institute for the Blind) trainer has been steadily increasing the difficulty of my walking training. When we began, he came to my home. Then he met me a few blocks away near a main intersection. Then a couple of times in August, he met me on the other side of the main intersection, letting me see him watching me cross, then hiding from view so I felt like I was crossing alone yet did have the safety net of him keeping an eye on me.
Gradually increasing independent walking builds up my confidence in myself that I can do this and won’t get run over — I hope!
I practiced crossing on my own in between training sessions as part of my homework and gained some confidence, but he met me on the home side of the main intersection a couple of times to increase my comfort level and keep my stress levels down. Sometimes includes backtracking.
But the day he assigned ride-bus-on-own homework, we met on the other side of the main intersection; then gradually further and further away and closer to my bus stop. At that point we began practicing an easy route to my appointment.
He’s trained me to ride a short direct distance on the subway, but after a disastrous attempt at using one of the busier stations, we’re plotting routes that involve minimal subway rides. At the busy station, I had pretty much frozen from a combination of slow processing from the brain injury, anxiety from PTSD, and visual overload; noise and movements of people and trains overwhelm my senses and cognitive processing capacity. He had to take my wrist and lead me on to the train. At some point, I’m sure I’ll get retrained to tolerate it all, but right now, we need to get me back to my appointments. So whatever it takes, however longer the ride!
Anyway, as he explained: break the route into steps: don’t see the entire trip as one but as a series of steps. You can walk to the bus, ride the bus, walk to the appointment. When I have to take the subway to my destination, break that down into steps too: walk to platform, walk along platform, get on train, get off train, take my time exiting, pausing as many times as I need to to let my brain catch up to all the visual and auditory processing and multiple small decisions that have to be made (like where to sit when a man with an enormous belly hogs the priority seats).
Meanwhile, in between training sessions, I have to practice walking to get used to turns and to increasing my speed sans getting dizzy, unbalancing, or pausing. My nausea is just about gone with walking. And with my Vision Mate, I have to practice crossing semi-busy, not major intersections.
When I practice, I have to expose my weaker side to traffic to get it used to all that movement; I have to consciously keep my head straight and look dead ahead (it increases my depth perception and so throws off my balance unless I practice); consciously keep both eyes open (my operated-on eye still wants to close when my brain decides it’s getting information overload); ensure I’m aware of people/bikes/cars/dogs/cats licking themselves as I cross streets and not swan off the curb lost in all that I have to keep track of as I balance with binocular vision; remember to muffle the noise of heavy traffic with earbuds so I don’t overload my brain with sensory input; don’t get freaked out by right-turning cars trying to beat me; stay calm as the light turns red before I reach the sidewalk because I’m slower than the light cycle (traffic services admitted that traffic flow is optimized for cars not pedestrians, no matter what the politicians spout to appear progressive and accessibility-friendly); and god knows what else I have to keep track of . . . Oh yeah, keep eyes focussed on a solid unmoving object while engaging peripheral vision so that I can stay balanced and walk sans pausing. This week, on quiet streets I know well, I have begun looking ahead way, way into the far distance as well as seeing the sidewalk under my feet all at once instead of just focusing on the nearest solid, unmoving object since the line of hydro poles or sheer distance I can see now no longer mesmerizes me into stillness or nausea if I keep moving. Still, my brain gets overloaded quickly, but it’s an improvement!
I’m better at gauging my pace plus my brain is getting used to the movement of me walking and me seeing other walkers. I still hesitate or slow down when people come at me as I have to consciously predict where they’re going to go so that I can navigate them — not easy when only now can I move off the line of my path to go around things or people — or when bikes and cars pass me by because my peripheral vision still can’t handle the visual and auditory information in real time.
Dizziness is no longer my constant companion! Yay!!
Riding the bus though — with its rattling and speed — well! The dizziness returned and nausea rose up again for the first few rides. I try to keep my eyes open, but when the bus fills up or the driver whips along, I close my eyes and play my music.
I’ve begun being able to play music while walking on quieter streets. I’m gradually pushing my brain to be able to listen to music, hear my environment, and see where I’m going while looking out for idiot cyclists and impatient drivers.
One unexpected aspect of learning how to ride the bus: I had to talk to my trainer with my eyes closed to cut down the nausea from visual overload. Weird. I rely on lip reading to understand, so it was a tad harder to follow him. Plus his voice seemed disconnected in space.
It’s been a bit of an experiment to see which seat my brain orders me to. The seat right behind the driver — because that location constricts my visual field — is the best one. Less visual information to process means a happier brain.
Since it’s becoming obvious it’s going to take me freaking forever to get anywhere, and I need earbuds to muffle the noise so that my brain doesn’t get overloaded from the auditory input and my PTSD doesn’t dial up my startle reflex, I had to buy a more comfortable pair than Apple’s. (Trying to find a set that lets me activate Siri, while being comfortable required the help of a senior manager and two tries at the store since I couldn’t read and research with my vision at its current state and Junior customer service reps are more into their fave brand.)
Unfortunately, the CNIB doesn’t provide tokens for TTC practice (my trainer has a special card that lets us both ride the system when I’m with him); I don’t qualify for a CNIB-sponsored pass; no brain-injury org that I know of supplies them; and being on CPP disability but not on ODSP, I receive no public transit benefits.
So that’s where I’m at! I need chocolate and a nap!!
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.
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.
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!
The people at the ADD Centre are so responsive and careful.
I developed flashes in my eye with the intact retina (the other one is scarred). I, of course, like a 21st century engaged patient, Googled it. And I also began thinking about tDCS and retinas even though the part of my brain that is being stimulated is nowhere near my eyeball. I discovered that the retina can be stimulated by tDCS at frontal (not where I am) and maybe at occipital (not where I am), and I also learnt that there are retinal and cortical phosphenes, though the flashes I was seeing are not phosphenes, according to the ophthamologist I saw. Cortical means the brain produces them. So on that limited knowledge basis, I called Dr. Michael Thompson at the ADD Centre before I saw the ophthalmologist for the emergency appointment. My biggest fear was retinal tears, but I also wanted all known information to pass on to the eye doc in case my stimulated and rapidly healing brain was doing something. And after too-long experience with doctors, I knew the eye docs wouldn’t know much about how what I’m doing with my brain could impact my eyes. I mean, my improving binocular and peripheral vision is a conundrum to them. Brain injury usually robs people of sight, not gives some back. I have an appointment with a specialized eye doc to look at why my scarred eye is starting to work. But I’m skeptical. Maybe I should go in with an optimistic mind, as my neurodoc suggests, as the one time out of ten I’m wrong may be this one time and the eye specialist will give me insight and maybe make the process less discombobulating.
But I digress.
So I talked with Michael about what I’d found in research papers, learnt about how I’m so far in the forefront, I’m essentially in “I don’t know” territory (my neurodoc told me the same on another aspect of my health), that the effects of tDCS are temporary and only long lasting with repeated use so if we stop for a couple of weeks, the effects will wear off and we’ll know if it’s implicated by how my eyes respond. I also learnt we want to stay away from the occipital lobe too so that there’s no unintentional learning effect on my eyes from gamma brainwave biofeedback. So we’ll move it to PZ only.
I’ve done the new protocol of no tDCS and gamma biofeedback at PZ for two weeks now. We will re-evaluate next week, see how my vision is. Right now, the flashes are diminishing, but the huge new cobweb floater dead centre is still hanging about. My brain is adapting, as in ignoring the irrelevant data, to the flashes but not yet the floaters, I guess.
As for what the eye doc found and my own ophthalmologist confirmed: the blurred spots I had a couple months ago were where the vitreous, the clear gel-kind of liquid that fills the interior of the eyeball, attached to the retina. When I began to see flashes and got the large floater, that’s when the vitreous detached from the retina. So the blurred spots became the floater and flashes. The only confusing part for me was that the week before, I realized I had had no blurred spots in my vision for some time. And in fact, I was seeing better than ever. Of course, I should have realized I needed to brace for bad news cause now my vision is blurry and distracting except when my scarred eyeball every now and then adds to the visual information, meaning I get true binocular vision. So why did I not get the floater when the blurred spots disappeared? Is the because my brain adapted to the effect of the vitreous attaching to the retina in those spots long before it detached itself?
Both the eye doc I saw in emergency and my own did a new-to-me procedure on me. They put anesthetic drops in my eye. Put goop on a tiny lens. Then plonked the lens on my cornea, making it look and feel like a giant alien spaceship in my eye, and inspected my retina closely through it. All clear. No tears!
I also coincidentally had had eye tests done four days before the flashes began. I got the results from my own eye doc the same day she inspected my retina. My field of vision in my good eye is excellent. She was impressed. That means my eye is sensitive and sees in the entire field it should. My scarred eye had depressed field of vision, but what she couldn’t believe was how sensitive it was. She expected it to be more depressed than it was. Maybe the brain is seeing through my scars! And that’s why I’m getting binocular vision!! We discussed this new thing and agreed slow adaptation was a good thing. I’m already overwhelmed with the rapid healing of my brain. As the neurodoc said and I agreed: it’s the price I’m paying and willing to pay to do as much treatment as I’m doing.
I found these videos by Kellogg’s useful. If you have (new) flashes or floaters or blurred spots that move and come and go, you may find them helpful to watch when you go see your eye doc.