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.