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