Jan 062015
 

A new year, a new blogging direction. 2014 was a shit year, pardon my swearing. But really, I’m heartily glad to see the back of it. Bring on 2015! May it bring hope.

My brain biofeedback is continuing as usual, no dramatic changes in me from it; since my neurodoc changed direction right at the end of 2014, I’m going to blog on that instead from this week on.

Reading is the worst loss I have suffered from my brain injury — and maybe from the PTSD too. I don’t know. Back in 2005, the ADD Centre didn’t know if they could help me with that, but told me — and followed up with results — that they could help me with my concentration, and that should help my reading. They did more than improve my concentration, they also helped me with my memory and seeing the big picture, that is, being able to see things or a book’s plot progression beyond my immediate focus. They also helped improve my reading through enhancing gamma brainwaves. We also had me read subtitles during LORETA training. But I was unable to keep going to Mississauga for that advanced type of brain treatment; I don’t know if in the long term that would have improved my reading dramatically or not. They also had me read while using tDCS or I tried reading interlaced-text signs — that experiment didn’t last long because we stopped tDCS. It’s a time-limited treatment therapy. But overall I found talking during tDCS improved my speech far more and more quickly than reading during it improved my reading. Go figure.

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, 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 9 days short of 15 years ago.

I have asked my neurodoc for help with my reading before. But 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 by physicians, which is a shrug, a sorry-smile as they show you out the door, and no referral to anyone who may know.

One day in 2014 I finally got him to agree to help me himself. That didn’t last long though. I tried again. Again I got a yes, then nothing. Back to wanting me to see experts. Fuck experts. The first one he talked to way back in 2012 or 2013 gave him the aphasia website, as if he and I are incapable of finding that website. Last year, he wanted me to see one who is affiliated with JVS. Never!!!! I loathe JVS. Someone affiliated with them is going to get, at best, polite tolerance from me. (JVS told me I couldn’t write.)

One day late in 2014 I read him something about me relearning how to read when I was at the TRI. Because of my emotions waking up, I probably emoted about those days in a way perhaps I had too broken a brain to have been able to do so before.

He 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.

As I told him when I spoke to him in the new year, 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.

He was serious.

He still wants me to see experts, but he’s putting that on the back burner and going to 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 see 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 excited about learning about you and figuring out how to help you. Heck, 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 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 in being able to write at the level you want to. 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.

——

We’re discussing reading on January 12th’s #ABIchat. Please join us.

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  • Irene Tran

    Thank you so much for sharing this. I could relate so much I was moved to tears. I also sustained a brain injury that affects my reading and although my reading has improved over time greatly, it is a daunting task. My love for reading is not what it was and it hurts, but I am still determined to continue to progress almost 9 years post injury. I truly wish you all the best on this journey.

  • Irene: It is a hard road, isn’t it? I’m glad you haven’t given up! I am blogging on this regularly now, and your comment is very encouraging to me. I hope my journey helps you and that it will inspire people to share with me and others what’s helped them and their experiences with whatever I try. Thank you!!!