To summarize, Shireen thinks the subway line renaming, and TTC signage create cognitive and navigational challenges for people living with brain injury, and possibly people living with other kinds of disabilities as well.
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 postson 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.
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.
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.
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.
BIST had two speakers come to our May community meeting: BIST member and writer Shireen Jeejeebhoy discussed her experiences trying to re-gain her love of reading and Katie Muirhead, advocacy specialist at the Ontario Brain Injury Association (OBIA), spoke about advocacy.
Before her brain injury, Shireen was a vivacious reader, a person who could lose herself in a book for hours. But after her ABI, Shireen lost that ability completely. It’s how she learnt the hard way that literacy does not equal reading.
Shireen can read words and sentences but can’t remember the information from them. She often stops in the middle of a sentence, and is unable to retain new vocabulary. She said she usually needs a nap after a reading session, and ABI-related initiation problems mean even choosing what to read is a problem.
After her brain injury, Shireen said she followed the medical model of re-learning how to read. She focused on one page at a time, and says it her a full year to read a simple book, which, she says, she remembers absolutely nothing about.
The interesting thing is, Shireen has written several books since acquiring her brain injury, because, as she explains, reading is taking stuff in, whereas writing is taking stuff out.
Shireen said her first illumination was learning the physiological reasons why she was having difficulty reading from a EEG test. Also, biofeedback treatments helped her remember characters and improve her concentration, though she was still unable to recall the book after she was done reading it. When her biofeedback treatment ended, Shireen could read for 20 minutes a day – what the average person reads. But Shireen is a writer who needs to read for hours and hours a day. 20 minutes isn’t good enough.
Which is why Shireen says she convinced her neuropsychiatrist to help her regain her love of reading. She says she didn’t want to go back to a reading “expert”, who would claim her reading abilities are fine. She needed someone to start from the ground up, and who would respect her goals.
While the road Shireen is taking is bumpy, her neuropsychologist’s treatment is helping. His first exercise was to take a newspaper article and to listen to Shireen read out loud in the same way she would read silently, for as long as she could. Shireen says this helped her doctor see her get a headache, repeat words and get tired from her efforts. From this he is able to work with her to help her, hopefully, regain her love of reading.
You can read what Shireen has written for our blog about her experiences here.
Brain Injury and Advocacy
Katie Muirhead is the advocacy specialist at OBIA, and survivors who need help accessing services or benefits they feel they are entitled to can contact her for assistance at: email@example.com or (905) 641-8877 ext. 229.
Katie explained that advocacy is different than lobbying. Advocacy is supporting a cause, and trying to get others to notice and pay attention to that cause. Lobbying goes a step further, and aims to make systemic changes – something which non-profits such as OBIA (and BIST) are unable to do.
There are four types of advocacy:
Self advocacy – advocating for your own interests
Peer advocacy – advocating for someone else’s interests
Systemic advocacy – advocacting for change for a larger group of people
Legal Advocacy – when a lawyer helps advocate for your legal rights
Focusing on self advocacy, Katie discussed that we all have some barriers to being good self- advocates. Maybe we get frustrated quickly and can lose our temper, or keeping track of paper work just isn’t our thing. What’s important, Katie said, is to recognize those weaknesses and get support in dealing with them.
In order to achieve your goal (for example, get on ODSP benefits) Katie said it’s important to break down the problem into more manageable pieces. For example, if you were denied ODSP, consider:
why you were denied
what are the facts about your case which you know are true
collect the right information (usually, additional medical information)
carefully look at the denial letter
Documentation is very important. Be sure to keep track of all conversations that you have about your case. Include the following in your notes:
names of people contacted and their titles
agency name and telephone number
description of what was discussed
In addition, it is very important to keep track of your medical information. Katie suggests keeping a binder of all of your documentation – so that everything is in one place. Organize these documents in a way that you can easily retrieve them.
Finally, advacating for yourself is a very stressful thing to do. Often you are advocating because you have denied something you need, such as financial benefits. It’s why Katie said self-care is so important. Things such as setting boundaries (I will not take calls or work on this issue during meal times, for example), talking it out with people you trust and trying to take time out from the case are very important. For more information, you can read Katie’s presentation here.
Shireen Jeejeebhoy writes about her journey back to the love of reading. You can read full articles about Shireen’s reading rehab on her blog.
“What do you want me to say to get you reading again?” My neurodoc asked me.
“I don’t know,” I shrugged.
About a week after I got back from a vacation in England, my neurodoc called 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 half-lowered my eyelids, slanted my brows, and stared mutinously and exasperatedly and frustratedly into the distance. He repeated he wants to help me; his goal is to make me better. He continued in that theme for a few minutes.
I began to process his words. I believed him, yet … I continued to process his words over the next hours. I began to think: maybe I can read two paragraphs from my reading homework during brain biofeedback. But should I tell him?
Several months ago, my neurodoc pointed me to a series calledIn Treatment for research into one of my books. In one of the videos, the narrator talks about testing the therapist. I guess that’s what I’m doing. How committed is he? Will he rely more and more on me to motivate myself in spite of me telling him I need him to be that for me?
For me to initiate and motivate myself takes a tremendous amount of energy. Never mind the emotional toll of feeling like I’m walking the treadmill of recovery alone. The treads on my running shoes are worn out. I need to know that there is at least one person on this planet who will be my Go Button, who will encourage me sans irritating me (not easy, I admit), and won’t expect me to carry on by myself while at the same time asks me if I’m pushing myself too hard.
So in the end, I did the skeleton and read two paragraphs during brain biofeedback. My forehead felt thick with effort, and my limbs became weak. But my gamma went up and my heart rate came down. He didn’t ask me about my reading when I spoke to him, and I didn’t tell him. My neurodoc’s homework instructions were to read every two days. I will try again next week.
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.
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.)
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.
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.
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.
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 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 . ..
Well . . .
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.