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Going to the CNIB, Talking Vision and Brain Injury

Accessible Pedestrian SignalWhen the Executive Director (ED) of BIST invited me to attend a meeting with the CNIB, I said yes. But I had no idea what I was saying yes to, other than getting to talk about vision and brain injury. I also didn’t really pay attention to how many people I’d be talking to. So when I spied through the door long tables in a large squarish pattern filled with people, my eyes grew large. Melissa, the ED, asked if I’d be OK. Uh, yeah. She and the CNIB had kindly set back the meeting so I wouldn’t have to get there at the crack of the working day. I’ve begun getting more stringent with sleep time since I’ve learnt Alzheimer’s is related to lack of sleep. I also can no longer tolerate dragging myself to places every week because I had to wake up early enough to get out on time. Brain injury screws up actual time asleep. The longer in bed, the better chance of getting something on the right side of six hours. Anywho.

We were given seats in the middle front to face the group, and I could see all of them equally well. This might have been the first time where I didn’t think about where to sit so as to accommodate missing peripheral vision — because I’m much more used to having it. Sweet.

Melissa had asked me to go first, and she’d end our presentation with info on BIST (Brain Injury Society of Toronto). I hadn’t planned anything. No clue what to speak on. Didn’t faze me because I learnt a long time ago that brain injury had given me the gift of speaking off the cuff and doing a pretty good job of it. I usually do write up a few notes on virtual cards, then don’t look at them at all because I can’t read and speak at the same time. But between the Olympics and stressors, I didn’t even think about it. As it turned out, my subconscious had been dying to speak to a captive audience. My vision story, the things I learned, needing advocacy and better design and maintenance of Toronto’s accessibility features like Accessible Pedestrian Signals, the anxiety of people injured in a car crash when walking near traffic, all flowed out in one long uninterrupted stream. Even feeling my energy seeping down and out my toes didn’t stop the flow of words. So weird.

The organizer began the presentation with having everyone introduce themselves including the two disembodied voices over the conference phone. It was so rapid, my brain was like, uhhh, I’m supposed to keep up with that? So before I began, I asked who was there, meaning what do people do. There were three groups. As I recall, orientation mobility trainers, low vision specialists (one of whom had a quiet guide dog in training, we all had to resist petting him), independent living including technology (oh, hmmm, mustn’t forget to talk on that), and early intervention for children. I couldn’t speak to the latter, but it gave me somewhere to start since I’d been half-blind since early childhood, and I could talk about how that was my identity and how brain injury began to restore my vision and how getting back my vision was initially not so hot.

They let me talk for a long time. My waning energy told me of passing time, but no one seemed inclined to stop my flow. They asked a few questions, which I was able to answer.

I felt valued, normal, like I had information and experience to share that was legitimate and valued. Maybe this sounds a bit strange to you, but after brain injury, this sort of thing becomes rare to the point that you wonder what’s the point of all the hell, of all the learning to get out of hell, if the only one to benefit is you. And you’re also in this strange place where people treat you with respect, listen kindly, yet don’t include you. And people who know me never call or email me when someone they love is concussed or has a stroke, as if my knowledge and experience is, as if as a person with brain injury I don’t know what I’m talking about because . . . injury.

One thing that really surprised me is that I had remembered to talk about technology and how health care workers need to know more than basics and more than clients know about devices and apps. For example, let’s not think of smartphone as just a phone and thing to text on, but a device that has apps that facilitate our work. For me, that’s writing, and I have three apps for that. I described them as concrete examples help better than simply abstract statements.

After my talk, one person asked my advice about technology. I can’t recall the specific question, but I watched her take notes as I spoke and was blown away. Usually, I get nods and zero interest. Rarely, see note taking and so many notes too throughout my talk and the following Q&A.

Most of the people there were women. No surprise as men aren’t as prevalent in health care professions outside of physician as they ought to be.

As time goes on and as I care less and less about people liking me, I’m becoming more vocal in calling standard medical care of brain injury as medical malpractice. Even so, it’s one thing to say that to someone I know, it’s another to say that to a group of health care professionals. I was surprised to hear that come out of my mouth, but I don’t regret it. During the Healing the Brain conference, Dr. Norman Doidge expressed frustration with physicians and health care professionals eschewing neuroplastic treatments as if these kind of individualized treatments lacked evidence and were some sort of scam. I felt validated hearing him express that; yet he hasn’t suffered as a result of such attitudes.

I have.

Greatly.

I’m permanently injured because neurorehab doesn’t include it and because they misleadingly call compensating strategies “cognitive therapy.” Oh please. And the government won’t fund community care for people with brain injury. They keep cutting and cutting (and paying their administrators more and more). I don’t have the social support to compensate for lack of community care — and I’m not alone in that. I also didn’t have anyone working with me in my brain injury treatment homework; I still to this day have to rely on my health care professionals to keep my brain active so that I can benefit from the treatments I continue to receive. No wonder my neurodoc opines that “few would do what you do.” It’s a demoralizing, shitload of work, and I’ve gotten so tired after eighteen years of this, I’ve quit a lot of it myself.

So going to the CNIB, seeing people genuinely interested in what I have to say, asking me questions and writing down my answers was what my soul needed.

My brain needed coffee after! With a shot of chocolate, of course!!