Sometimes it seems like nothing ever changes with my reading; when my neurodoc talks about my great progress, I go feh. You’re too hard on yourself, he says. Maybe. But when I began my reading rehab journey way back in 2000 (and failed or faltered several times on the way since), I began with taking five minutes to read one page. Now I take five minutes to read four or five paragraphs of an article on an iPhone screen. It feels like the same, like all I’ve done is gone back to where I began.
But I haven’t.
Back then I needed a nap after my reading homework. Now I don’t.
Back then I read a book or materials I’d read before my injury because I knew it cold. Now I read brand-new material, more and more on topics I know zero about.
Back then we didn’t care how much or how well I recalled; it was only to get back to reading. Now we do care.
And we know that that first try was a sham in a way because what did they mean by reading? Was it what I thought of as reading? No. It was simply the action. For me, it’s the whole experience; it’s being able to follow the story, remember as I go along, learn. And it was a sham also because they didn’t know where my reading problem was located. They didn’t define reading (still don’t, but I have now for myself), didn’t assess my brain while reading, didn’t listen to my reading like my neurodoc did to hear for themselves my inner experience.
Back then, progress was simply some improvement. Now progress is no longer defined as needing one-hour naps instead of a two-hour one. Progress is more.
Progress is reading more and more: it’s progressing from two to four to multiple paragraphs. Progress is suddenly in the last couple of days not developing a headache by the end. Progress is setting a minimum time to focus on reading (5 minutes) because I can read more paragraphs in less time. Progress is being able to recall more in less time.
And progress is both my neurodoc and the ADD Centre now fully vested in and partnering with me in MY reading goals, not what is considered standard for brain injury and what they are comfortable with. I guess that’s what health care gurus mean by “patient centred.”
