Shireen Jeejeebhoy

I met again with the psychology prof who has helped me discover more pieces to my reading puzzle as I work to unravel why I have so much trouble reading after brain injury.

To recap: I have a diffuse injury, and so many areas involved in reading were damaged. But some areas were not. My health care team and I have worked on improving concentration, healing Wernicke’s Area, enhancing alpha brainwaves in the left frontal cortex. I’ve improved a bit. I can read more than one paragraph; I can skim and read Twitter; I can sort of see the edge of the big picture of an article. But I still cannot read a book in order to follow a plot, remember characters, acquire and retain new knowledge — and so I write what I’ve read about to try and help me retain it but mostly because a hard copy is my memory. The question is: which area or damaged areas are the sticking point? What precisely do I need to heal?

Clues came from the EEG assessments the ADD Centre conducted, other clues come from my meetings with the psychology prof. And always after one of our amazing discussions about cognitive theory, neuroscience, and my experience, I come away with a practical suggestion or two.

We began by discussing how the brain integrates information over space and time. (For some reason, I kept thinking about my book Time and Space!) Apparently, much has been studied about how the brain integrates information in space. For example, you look at a cup, your visual cortex sees the bottom of the cup, sees the lid of the cup as related to the bottom in space, and puts them together to create the information that you are looking at a cup.

The brain also integrates information over time. That’s reading! I thought. Yup. True, you see words in space, for they are next to each other or above and below each other on a page. But when you read, you take them in one after the other over time — if you’re a slow reader. If you’re a fast reader, well, it’s a bit more complicated. So let’s forget about fast reading; let’s just look at reading as if we’re a slow reader: one word at a time, sequentially in time.

The brain has a corresponding map of things in space. For example, the upper part of our visual field maps to an area below a sulcus (groove) near the bottom back of our brain. The bottom part of our visual field maps to the area above that sulcus. Yeah, the brain likes to reverse reality. It’s funny that way. That’s why we know a paralyzed right arm means damage in the left side of the brain. Anywho, bits of information in our visual field –- bits of what we see – get mapped into corresponding areas in the back of the brain. But then there’s another area, a little deeper in and towards the cortex or outside of the brain. This area also processes bits of information, except in combination not individually. So two points in the first area become one point in the second area. This is handy. I wasn’t clear if the processing happens over time; it seemed like it happens almost simultaneously. The brain sees both the bits and the combination of bits at the same time.

However, the brain has no corresponding map of things in time. We exist in a point of time. Our brains exist in a point of time. Our brains don’t exist in the past, present, and future all at once. So how does it map bits of information in time?

How does it map reading in time?

And how does it combine words, one after the other, in the way it combines bits of information in space?

We don’t know.

What we do know . . .

From my discussions with the ADD Centre, I understood that reading begins with the back of the brain processing the visual information – the words – then Wernicke’s Area receiving that information and translating the language of it into understandable meaning before sending it on to the frontal cortex where meaning is processed, old knowledge is accessed, new information and old are all synthesized together, and the whole thing stuck into long-term memory. I’m sure that’s a simplistic explanation. The sticking point to my reading problems could be anywhere or everywhere along that network.

After the ADD Centre used tDCS to stimulate healing of Wernicke’s Area, my ability to speak and listen improved markedly. Even though I must still prop up my ability to understand spoken words by watching people’s lips move when they talk, I don’t have to expend so much energy in simply understanding. That means I have more energy to compose and say my reply. Conversation with me is more fun.

But it did SFA for my reading.

And so there must be another sticking point. Early in 2016, the ADD Centre targetted my left frontal-prefrontal cortex (FP1-F3), and my headaches while doing my reading homework disappeared. My ability to organize also began to re-emerge from the dead. Unfortunately, having experienced extreme stress, my brain regressed. I had lost the foundation of relaxed, focused attention in the middle top part of my brain that they had trained in me back in 2005/2006, and we had to switch from training FP1-F3 back to enhancing 12-15Hz in the middle top part of my brain. Since gamma brainwave enhancement de-stresses me so well, we’re simultaneously enhancing it too. Although my resiliency and calmness are returning, unfortunately, my headaches from reading also have. I try not to think about that setback. Anyway, back to my conversation with the prof.

I talked about the effort of reading. This fascinated the prof, for there was no sign of the effort on my face while I was talking. How can I talk seemingly effortlessly yet have so much trouble reading? Well, listening is difficult too. Just because you can’t see the effort on my face doesn’t mean there isn’t a whole lot of conscious hanging on to words as my ears pick them up so that I can follow the conversation. If I want to ensure full comprehension, I have to make a very concerted effort to hear and understand, especially if the conversation is complex like ours was. But if it’s just social chit chat, then I can sort of coast.

In any case, listening is still not as difficult as reading.

Also, talking, like writing is output: both are easier than the input skills of listening and reading. He came back at me with the fact that talking includes assessing facial expressions, body language, monitoring what you’re saying, etc. Only later did I think about the fact that after brain injury, little of that happens, which is probably why we make for sucky conversationalists. But my ability to read faces and body language, to stay on point and not hop around like some crazed bunny, has improved markedly. So just because talking is multi-faceted doesn’t mean it’s still equivalent to reading. I can talk sans caring about conversation. I can’t look at words sans reading without caring about the fact nothing is happening if I do that unless I make myself OK with that (I did for awhile).

I think feeling the effort of reading is like feeling the effort for any ability or skill that’s damaged after brain injury. The brain learns, and while it’s learning skill X, it’s effortful. Watch a child learn to read: their brow is furrowed, their tongue is tucked into the side of their mouth, they mouth words with effort. Then watch an older child read: their brow is relaxed, their mouths may silently sound out words, but they read easier than the early reader because their brain has automatized reading. Only when they come across a new word will you see their brows come together, their lips move in exaggerated caricature and their tongues in wide gestures, several times, maybe even asking a parent or teacher to sound out the word a few times, before they master it. Even then, it may require several exposures to this new word before it becomes part of their effortless reading. Now watch an adult reader: they’re relaxed, nose deep in book, they’re absent from the real world, they’re deep inside the imaginary world, feeling the feelings of the characters. almost physically experiencing the fictional world they’re reading about, relating themselves to the characters, having revelations, learning sans knowing it. Time means nothing. That adult reader exists outside of real time and lives inside imaginary time. They can do that because reading, learning new vocabulary, putting the story into memory and adding to it, drawing out old knowledge and using it to understand the story – all of that the brain has become so good at it, it’s automatic. Anything that’s automatic takes less energy and frees up resources for the brain to do other things, in this case, engage emotions and get into the state of flow. And learn.

Brain injury has taken me from that adult reader to the youngest child, except that I retained my vocabulary. At first, I lost access to much of it; as I heal, my access is returning. At this point, it seems like it’s 100 percent. I know it isn’t, but it’s returned enough to have that façade.

As I talked to the prof and listened to his theories and explanations, I would repeat the concepts or spring ahead with my concepts. This puzzled him: how could I create concepts and understand complex concepts yet have so much difficulty reading? I told him the psychologist who saw me way at the beginning of my injury said that I had not lost my logic or reason, they were only stuck inside and I could still use them, albeit at glacial speed. My speed has increased markedly since 2000, and I have retained my old knowledge. I can access that, especially when conversation stirs old facts back up into the recognition memory zone. Logic and reason and my foundation of old knowledge acquired during decades of voracious reading pre-injury are the reasons I can create concepts and understand complex ones.

I explained the effort of reading and listening is in the hanging onto each word or idea as I move onto the next word. I have to effortfully keep them present in my mind as I add to them. It’s hard work, and it’s all conscious work.

We went on to discuss working memory. Way, way back in my university studies, I had learnt about short term and long term memory. Simplistically put, information goes into your short-term memory; whatever your attention decides needs to be remembered is shoved into long term, the rest forgotten. Working memory is a newish construct to me. I asked him to explain. There launched a rather interesting discussion, the upshot of which is that there may be no such thing as working memory in the brain. It may simply be a psychological construct with no physical reality. What I had learnt remains true.

He concluded that my sticking point must be at the basic elemental level, that is, the level of taking in bits of information and combining them. What if we took that block out? What if we combined those words for me? Pictures do that. It takes many words to describe a picture; but one glance to understand a simple picture or a prolonged glance to understand a detailed picture. In either case, the words are combined for the viewer.

There’s a new genre in town: the wordless graphic novel. The reading is in the looking at each image panel in sequence. He loaned me Cinema Panopticum to see if it would make a difference to my reading, to see how my brain would react.

The other issue I have is speed. I can follow people much easier than I used to, but if they talk too quickly, or when my speech speeds up all of a sudden – ack! – I get lost. I can compensate by either not caring I’m not following them and faking it or by asking them to repeat themselves. I’ve grown clever at being able to ask people questions so that they repeat what they said without it being obviously asked.

He suggested that I could use a podcast app that speeds up or slows down the rate of speech to assess how quickly I can comprehend the spoken word. I can take a passage and note down the speed. Then listen to it for x minutes and record at what speed I could comfortably comprehend it. Repeat that assessment regularly, say, once a month to track my progress.

When I first began my reading rehab in 2015, I had timed my speed in seconds per word. But now I time it in terms of paragraphs per number of minutes. Less work. However, it would be a good idea to time my reading per word every so often. Being able to see if I’m changing or not will give me an idea of my progress.

In the occupational therapy world, writing down goals and ticking them off is how they get those of us with brain injury to see that we are accomplishing things, because things take so frigging long to do. The same with timing podcast passages and words read. It would give me an objective number — those two methods would show me and my health care team exactly what kind of progress I’m making.