From my reading rehab so far, I’ve learnt the number one need is a reading coach.
Let me explain.
Brain injury sounds so simple. Like with a broken leg, you get the diagnosis, you know what it’s all about, right? Um, no. Unlike with a broken leg, it takes years to learn the totality of the injury and its effects — probably why in their simplistic thinking, the medical profession has dubbed the long-term damage “PCS” — Post-Concussive Syndrome as if finding out the totality of the injury makes it a separate entity mysteriously arising from the injury. Oh brother. But as I was saying!
It takes awhile to cotton on to the totality of the injury, partly because when you can barely brush your teeth, you’re not likely to notice you can’t read. Any problems you have, you’ll probably put down to fatigue or your rehab team will put down to “this is typical” and so not investigate the why behind the problems. Also, damage to systems like initiation, vision, memory, organization, to name a few are going to kibosh many cognitive skills including reading. For example . . .
Maybe you can read, but you can’t initiate so how will you ever be able to actually choose a book and then sit down to open the book in any reasonable length of time, like within a week or two?
Maybe you can read, but your eyes do strange micro movements no one has ever picked up on, so you think you’re perceiving letters, but the effort to do so hogs so many brain resources that there’s nothing left to process the meaning of those letters and it takes a few conversations with your rehab team to realize you’re not actually reading (although with inadequate assessment methods, they probably won’t know the reason why).
Maybe you can read, but you can’t organize your way out of a paper bag so how would you ever get to figuring out when to read and then finishing a book you like?
Maybe you have no problems perceiving words, sentences, paragraphs, but at the end of the book you have no idea what happened. And who was Mr Smith, that other main character again, you ask yourself as you close the small novel it’s taken you a month to read.
And so on.
So first off, you do need a complete and thorough investigation of your eyes and brain to determine what exactly are the problems. But after that, the number one need for successful rehab is . . .
. . . a reading coach!
First off, relearning to read is like going through childhood all over again — but sans parents and teachers to teach, guide, and keep you at it. A reading coach subs in for parents and, perhaps, teachers.
Initially, you’re going to have all the “motivation” in the world. You’re desperate to read and that desperation will look like motivation to everyone. But reading is tricky, and without proper treatment of the injury — which most don’t get because strategies ain’t treatment — and even with — it will take years to recover. Maybe you’ll get lucky and some short-circuiting network will heal itself, and voilà: all better.
But most of us can’t count on that.
A reading coach will keep you going when your desperation turns to despair that this will ever get better — and what looks like motivation dries up. Your reading coach will be your unending source of external motivation to heal your reading — and won’t let you give up and bury your grief in order to accept the status quo like most people want us to and so we think we have to, calling it being positive to make it OK.
I’d just like to say something about being positive. Positive is facing a problem full in the face, not accepting it as OK but fighting to find a solution. What is not positive — is accepting the problem as the “new you,” burying the grief (that will pop out and bite you in the ass down the road, you can bet on it), and saying malfunctioning reading is A-OK so that your health professionals who are failing you don’t have to push themselves to help you recover your reading. That’s not positive, that’s quitting. It’s letting people fail you because they’re too lazy to find real solutions or don’t want to face the fact of your tragedy. And it’s not allowing you to express your true feelings and fight for what you really want: your reading back. Speaking of which . . .
A reading coach will discuss and encourage you over any bumps in your reading rehab. And you will come across lots and lots and lots of bumps. If you have trouble problem solving even the littlest thing, you’re not going to be able to continue when you have a bumpy reading day. The bumps will flummox you for weeks or months and by then you’ll have lost any progress you have made. More disappointment! And discouragement! And despair!!
A reading coach will ensure bumps are solved quickly. You won’t lose your momentum. And you won’t lose any progress you’ve made.
It is actually easier to read when reading with someone. I believe it has to do with our biology as social animals. Reading is bloody hard. Anything to make it easier so that we will stick to it and get it back is a win.
When our wonky emotional centres, what doctors call mood disorders because they can’t wrap their minds around the idea that an injury to the brain can damage electrical conduction through the brain’s emotional centres so it’s not a mood disorder but an injury that needs repair — oops, there I go again, digressing — where was I?
Oh yeah, when a healing emotional centre makes functioning impossible at times, when it blocks reading, a reading coach can read to us. Our brains will still be hearing words and having to, at some level, absorb and process reading material. And we will know: hey, no matter what, our reading rehab continues.
That is a big emotional plus!
Brain injury healing is a path littered with failures and leaps backward. Anytime someone can help us keep on achieving when our brain falters, it’s a good thing.
It tells us: this path of healing will not be diverted.
This is such an important, positive message. It fuels our persistence. It keeps us going through the decades.
Yes, folks, I said decades.
Healing the brain takes DECADES.
Especially if your medical team is relying on spontaneous healing and symptom management aka drugs and strategies only.
A reading coach will also notice your improvements, will cheer you on, and will gently encourage you to increase the amount of time, number of paragraphs or pages, or difficulty level — or in my case, keep you from jumping too far, too quickly ahead and then failing spectacularly.
And most importantly, with a reading coach by your side, you won’t feel alone.
Reading is a solitary activity; (re)learning to read is not.
Your reading coach will be the one person who won’t diminish you in this arduous endeavour. S/he won’t pat you on the head and say there’s nothing wrong or it’s good enough, now get on with your life, as if striving to restore your reading isn’t precisely that: getting OK* with your life.
Isn’t restoring precious lost talents and skills worth striving for?
A reading coach by your side says it is. And gives you the best chance to make it so.
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*(I was going to type “getting on” — that bloody mantra so many use when they want to look like they’re understanding and helping you but actually don’t — when Autocorrect turned “on” to “ok” and I thought: yeah, OK is true!)
