Thoughts on reading and brain injury

BY: COIRE

I acquired my ABI following a surgery to remove a brain tumour ten months ago. The global neurological fallout from my brain injury has been extensive. As the one-year anniversary of my surgery approaches, I thought I would share my thoughts on literacy in response to Shireen Jeejeebhoy’s posts on the subject of trying to regain her love of reading.

Shireen’s posts got me thinking how inundated I am with the cacophony of letters which are part of words that have meaning in relationship to signs, food, location, businesses, pill bottles and cereal boxes. For me, these words populate my vision and are constantly demanding attention, yelling to be recognized and have meaning extrapolated from them.

Words are like the faces of friends I used to know but can no longer recognize. I seem to be unable to place them even though I’m continually on the verge of recognizing them, the meaning on the tip of my tongue, if I just look long enough, it will all come tumbling back to me.

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Words – I think of all the hours we spent together growing up, the hours I spent practicing their loops and lines, the time I etched them in the black paint under the train tracks by the river high on marijuana and Allen Ginsberg, how in the empty space between letters they seemed to embrace the entirety of my young world, reckless and immortal, how joy and health was something I carried haphazardly in my pocket with a lighter, paper and some lint, its origin never questioned, its source endless. It seemed that words were an inherent part of the magic of existence.

The time after my surgery is stark and still painfully clear how difficult it is being an illiterate adult. Since then, I have done a lot of work to get back to reading. And like many of us who are reading these blogs, there are moments of successes and triumph. But the triumph is dulled by the weight of loss, the scope too large to see at one time, like a panorama picture of loss.

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Things that have helped me:  I try and remove all words and letters from my view when I don’t have the energy to work on them. I remove the newspaper from the table, when I sit there, lists on the desk. I don’t know if it’s like this for anyone else, but words in my field of view seem to taunt me to make sense of them, as though they are yelling for my attention and I am unable to block them out.

My family hands me the menu right side up to save me from flipping it around to try to make sense of it. Point to the exact place I need to sign on a form. I have been working on compensation strategies with the therapists that have helped hugely. Practicing scanning and flash cards, reading easy books to my young daughter. And also trying to enjoy young adult novels I already know or have read before or have listened to on tape. There is a great dyslexic font that has helped me on the computer which is free , easy to install and keeps all the letters from somersaulting as much.

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I know everyone has different challenges and strengths and I only offer what has helped or is helping me in the off chance it will aid someone else as the literacy blog post helped me, as writing this is a obtainable goal helping me. As I read I focus on the enjoyment of it, reminding myself it’s a language, not unlike a foreign language and only comprehending 60 per cent or so is fine. This emphasis on enjoyment and not on comprehension helps me engage in an act that used to bring me enjoyment and now still does, most of the time.

The slow and steady – reading rehab begins

Shireen Jeejeebhoy writes about her journey back to the love of reading. You can read the first post in this series here.

BY: SHIREEN JEEJEEBHOY

For most of my post-brain injury years, I’ve roared ahead at top speed trying to get my life back as quickly as possible. I worked hard to regain skills, the necessary ones and the ones which, are critical-to-me. I strived to become financially independant.

Then last year happened. It was tough. I learned you cannot control other people. Your health care and recovery are by necessity dependent on others, and when they don’t listen, you can either scream and stomp off, go with the flow and not heal much, or keep pushing. (And pushing and pushing while your PTSD hits the stratosphere as parts of your recovery slow to a crawl.)

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At some point, I stopped driving hard. It was almost a relief to move into the frozen lane. My neurodoc was probably relieved too.

That’s when reading books and long form articles halted altogether. That’s why my neurodoc said we are starting from zero with respect to my reading. Anything I do is an improvement, no matter how small.

And so we begin reading rehab with a few possible strategies.

After my neurodoc saw me read a portion of a Wall Street Journal article, he said the first thing I needed to do was relax and bring my anxiety under control. We discussed strategies I’m familiar with, but in a different way — with the encouragement from someone being alongside me – not as an expert telling me what to do.

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First: I used my Mind Alive audiovisual entrainment device’s 15-minute alpha session to relax. Anxiety interferes with cognition and makes it harder to read. The key is to get rid of the anxiety, which will take awhile.

Next: I covered off the text, and used my fingers or a ruler to slow my reading down. Instead of using the Evelyn Wood method to speed up my reading, I used it to try and slow down so that my eyes worked at my processing and integration speed. The only thing is, I can’t use my fingers or ruler on an eReader or iDevice, so we will need to come up with a similar strategy for screens.

And finally: do a Toronto Sun-style summary of what I’d read. Let me tell you, when he had me summarize what I’d read to him as if it were for Toronto’s daily tabloid, it changed my task from being a university-level assignment to something do-able.

My neurodoc insisted I take home the WSJ article to trigger the things we discussed and to remind me I’m not alone.

He reminded me that the strategies we discussed this week are the barest beginning. I have a partner and someone doing the thinking, not as an expert in reading, but as an expert in listening and in me so as to come up with approaches to help me. Thank God for that.

You can read the full versions of Shireen’s posts on her blog HERE.

Only for the love of reading would I struggle this much!

Shireen Jeejeebhoy blogs about about trying to regain her love of reading,  15-years post brain injury.

BY: SHIREEN JEEJEEBHOY

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Reading is the worst loss I have suffered from my brain injury, and maybe from the PTSD too.

Back in 2005, the ADD Centre in Mississauga told me they didn’t know if they could help with reading. Instead they focussed on my concentration, which helped my memory and improved my ability to see ‘the big picture’. That meant I was able to see things such as a book’s plot progression. My therapy included reading subtitles during LORETA training and enhancing gamma brainwaves. For a while, I read using tDCS and I tried reading interlaced-text signs.

But reading still frustrates me and remains a difficult cognitive task. Task, that word tells you everything you need to know about my reading. It’s no longer a joy, an escape, or a way to satiate my curiosity. It’s a task.

I don’t want it to be a task any more.

I want it to be a joy and an escape. Again. As it was before that horrid day almost 15-years ago.

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I have asked my neurodoc for help with my reading before. He informed me it was not his expertise, and like most physicians, and unlike my Dad, if it’s not in his bailiwick, he fobs it off to others. Actually, his response is better than the usual response I get from physicians, which is a shrug, a sorry-smile as they show you out the door and no referral.

One day in 2014, I finally got my neurodoc to agree to help. That didn’t last long though, because there was no follow-through. I tried again. I got another ‘yes’, but nothing happened.

Later on I read something to my neurodoc about re-learning how to read when I was at the Toronto Rehabiliation Institute. Because of my emotions waking up, I probably emoted about those days in a way I had too broken a brain to have been able to do before.

This time, my neurodoc heard me.

I told him being able to read in flow is the single best way to de-stress me and to keep me from falling into crisis. I had told him this before. But that day, he really heard me.

I don’t know why then and not before . . . But . . .

He told me just before Christmas that we would focus on reading in the new year.

He asked me if I had tried the Evelyn Wood method of reading. He wanted to know if following my finger below the text would help me keep my focus on the print or not. I couldn’t recall when I had tried that but recalled frustration. He asked me to try it over Christmas.

I didn’t.

I didn’t believe he was serious. I wasn’t going to put in the effort only for him to once again say, ‘I want you to see experts.’

But he was serious.

He still wants me to see experts, but he’s putting that on the back burner and will focus on figuring out how to help me himself. He finally understands what I believe: only he has the ability (aside from myself) of seeing and dealing with the entirety of the problem.

It’s like an elephant. One expert can see the trunk and heal it. Another can see the leg and patch it up. But only he can see the entire elephant and understand what needs to be done to heal the whole beast. And perhaps do it. That is my hope.

And so after talking to me about how I best (and least) learn and retain knowledge, he is now excited to help me. He thanked me too!!!

There is nothing more exciting in health care than to have a physician eagerly interested in  learning about you and figuring out how to help you. Heck, there’s nothing more exciting than entering unknown territory with an able and joy-filled partner.

Because he convinced me he was in it this time, I told him the more painful parts of the big picture. The ADD Centre had helped me improve the cognitive process of reading by improving foundational processes, some more than others. They had also helped me in 2006 with the fear and anxiety around reading that had built up over the years before I saw them. But . ..

Things deteriorated.

Why?

Well . . .

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Reading is an extremely complex cognitive process that is harder to restore than any of the others, I think. People think: literacy = reading. It doesn’t. Reading is more than just being literate, yet most reading rehab is essentially regaining literacy and learning study methods. They forget the actual cognition and emotion and psychology of reading.

Reading is foundational to being able to study, never mind just being able to escape into a good book. Reading at the level one is writing is essential. It is the number one thing to success as a writer. My writing is miles ahead of my reading.

Not being able to read after a lifetime of being able to is disheartening. And frustrating. And then devastating. In the face of my frustration, people didn’t know what to say or do; they wanted to make me feel better instead of working with me to make it better. That made me feel worse.

Reading was an unconscious core part of my identity. And so one day this happened.

I had to admit to my neurodoc (what I’m sure others had sussed out but either said nothing to me or did not broach the topic full on) that I was no longer reading books. Not print books. Not ebooks. I was reading no books.

In an effort to kickstart my reading on my own, I began to start our sessions with me reading a chapter from one of my books out loud to him. That is the only book I’m reading.

And on that note, I’m ending this blog post.
Shireen Jeejeebhoy sustained a brain injury in 2000. Since then she has written several novels and the book Concussion Is Brain Injury, but reading books remains a struggle. She is trying for the umpteenth time to regain that lost love. Go to her blog to read the full version of this article.