by David Roland
‘Sound Replay’ and ‘Tell Us Apart’ are the hardest of all the exercises, for me. After the first few weeks of training, I remain on the lower levels for these exercises, wondering how I’m ever going to progress beyond this.
In ‘Listen and Do’, I am presented with the visuals of a street scene that contains people, animals, and objects in the foreground, and buildings in the background. I hear a set of instructions: a sequence of people and objects that I am to click on. Once the instructions are given, I need to click on the objects in the same order. As the exercise advances to higher levels, I have to move a person or an animal to a new location. (For example, ‘Move the redheaded girl to the left of the brunette girl’, or ‘Move the black dog to the right of the hospital.’)
I’m okay with this exercise, once I develop a strategy for it. I draw imaginary lines between each named object, giving me a visual shape I can remember, which aids in recall. This resembles my real-life task of visualising a mental list of things to do and staying on track until they are all completed.
The final exercise, ‘Storyteller’, is the most enjoyable. The voice tells a story of everyday interactions and events happening between people. At its completion, I need to answer ten, fifteen, or twenty questions about the story I’ve just heard. The answers are in multiple-choice form. The stories, five in all, become progressively more complex. This is training short-term memory and comprehension — being able to remember and understand details in spoken conversation. I recall the short stories the neuropsychologist read to me and how poor my memory was; I can see already that I’ve definitely improved on this type of task since then.
Progress bars appear on the screen during each exercise, and I strain to get to the next level of difficulty. There’s a sense of achievement (a dopamine hit) when I reach a new level, and the program rewards me with animated fireworks and music. At the end of every session I can access a summary page, which lets me know how I’m going with each exercise. This is reassuring (even though it shows how poorly I’m performing in most exercises): it gives me a baseline from which I can see increments of improvement.
As I get into the rhythm of the program, most days I advance on an exercise or stay at the same level. But sometimes I have an off day. That’s when I see, in the form of the progress bar, how dramatically my performance drops off when I’m mentally or physically fatigued — the clearest indication so far that fatigue really does affect my day-to-day capacity to function.
After one month of doing thirty minutes most days of the week, I have progressed up the ladder to some degree in all exercises. But I haven’t noticed a great difference in my auditory processing outside these exercises. I’m a little discouraged by this. Yet the cheerful male voice that explains what each exercise does and why it is useful shows a picture of the brain with coloured lines connecting the areas that each exercise works on, reassuring me that I am making new neural connections. If it doesn’t work, I’ve only wasted some time and some dollars.
I’m consistent with the Brain Fitness training, even when I’m feeling off, or stressed and anxious. At first I do the session mid-afternoon, before I get rubber brain for the day, and after I’ve done a decent amount of wrangling with lawyers, real-estate agents, and creditors. But after a while, I realise that I make better progress if it is done earlier in the day. I change tack, doing the training session just before lunch. Yet on the mornings when I attend a medical or psychological appointment, I can’t do this: these sessions knock me around for most of the day.
By the six-week mark, I’ve noticed a real difference. My progress has been gradual, but all of a sudden the world is easier to comprehend, as if a door has opened. Other people’s speech seems clearer; it’s less of a strain to listen to them, and easier to understand what’s being said. Everyday social conversation with another person is simpler, and I’m less fatigued afterwards. I still lose track in longer, more involved conversations, and I get fatigued after group conversations, but I’m confident now that I’m showing real improvement. My brain is coming back online and is starting to work with me.
In time, I also notice that the individual notes in the music that Nick and I play, or the sounds that other musicians make, stand out more than they have since my stroke. Phone calls remain taxing, and I’m still easily distracted by noise or other disruptions. But I’m remembering the names of familiar acquaintances easily now, and I think that my sense of direction has improved a little too — although it’s nothing like it used to be.
I catch up with Wayne again and, after we’ve talked for a while, he says, ‘You’re looking brighter. Do you realise you haven’t asked me once to repeat a question?’ Gee, is the difference that obvious? I can’t help but smile.
13
I BEGIN TO wonder if I could be doing more for my brain rehabilitation; it doesn’t feel as if I’m doing a lot, except for the Brain Fitness program.
I call Chris, a regional case manager with the Brain Injury Rehabilitation Service. In the past, she’s referred brain-injured clients to me for psychotherapy. Her service can’t take me on as a formal client because they are only funded for traumatic brain-injury cases, not for strokes; there is no service in our region for stroke victims who can ‘walk and talk’. But, she says, she’d love to see me.
When I arrive at the old house that is their headquarters, Chris introduces me to another case manager: Leanne, a speech pathologist. We sit around a table in a heavily furnished room that serves as their meeting room. I explain what’s happened to me and pass over a copy of the neuropsychologist’s report. I try to summarise his findings, emphasising my poor auditory processing and verbal memory.
Chris notices the neuropsychologist’s comment that I have mild cognitive impairment. ‘Mild cognitive impairment is clinically significant.’
I want to know what chance I have of recovery. ‘Most improvement will happen in the first two years,’ says Leanne, and Chris adds, ‘But some are still recovering up to ten years later.’
I mention that I’m engaging in psychotherapy and meditation, and doing the Brain Fitness program. ‘Is there anything else I could be trying?’ I ask.
They each ask questions about what I’m doing day to day.
For a while I keep up with their conversation. But soon, with the two of them coming at me, their words become an auditory blur. ‘Would you like us to speak more slowly?’ Leanne asks, looking at me intently. ‘You seem overwhelmed.’
Yes, I would. My brain is like an underpowered engine trying to make it up a steep hill.
They slow down, but without a hint of annoyance. Am I keeping a diary with daily tasks and appointments, and crossing them off immediately after they’re done, so I know where I’m up to if I get thrown off track? Am I putting my keys and wallet in a bowl in one place? Do I call regarding upcoming medical appointments, to confirm when and where they will be? Am I making physical changes in my environment to make things easier and to set up reminders? Do I carry earplugs to protect against noise? Am I exercising? Chris says, ‘The main issue for the brain-injured is getting overloaded with information. In time, you’ll work out your own strategies.’
‘I’ve noticed you searching for words as we’ve been talking, using four or five sentences to say what could be said in one,’ says Leanne. ‘Finding roundabout ways to get where you want to go. Circumlocution.’
‘Yes,’ I agree, relieved to hear her name this. ‘Like, I might want to say, “I’ve left my wallet at home,” but I mightn’t be able to think of the word “home”. Instead, I’ll say, “I’ve left my wallet where I live.”’ Often I’ll keep talking, hoping that I’ll get to the point eventually. When I’ve mentioned this difficulty to others, they say that I sound fine to them. I’m realising that part of my ‘problem’ is that I look and sound normal to others; my deficits are invisible.
‘I think it would be worth doing a speech ass
essment,’ says Leanne. She will arrange for a private speech pathologist to do this and recommend to my insurer that they pay for it, referring to the neuropsychologist’s report.
Other than this, they both conclude, I’m doing a lot of the right things: I’m keeping a diary and to-do lists; I’m exercising. They haven’t heard of the Brain Fitness program, but encourage me to keep it up.
‘I’d like to be useful again,’ I say. ‘Maybe do some voluntary work.’
‘You could assist a researcher,’ says Chris, ‘where you can work at your own pace in your own time. You have a research background.’ She gives me a booklet from a conference on brain impairment she’s attended recently. All the speakers are listed, along with their contact details. I could follow up with some of these people, she suggests, and highlights a few of them. She’d like the booklet returned when I’m done.
Leanne mentions the university health-research unit nearby as another option. ‘They do a lot of dynamic research in mental health,’ she says. As we wrap up, she hands me a piece of paper and I see that she has summarised our discussion, with the recommendations they have made, in point form. It’s a thoughtful and very useful gesture.
I get up to leave and Chris grabs a book: Over My Head by Claudia L. Osborn — a memoir by a medical doctor who suffered a brain injury after being hit by a car while riding her bike. ‘You might find this interesting,’ she says. ‘And call me any time. I’d like to know how you’re going.’
When I look at my watch outside, it has been an hour and a half since I arrived. I’ve got rubber brain, but I’m pleased: I’m doing all I can, and I’ve found people who understand and want to help. I didn’t feel abnormal with them.
I’d planned to do some supermarket shopping after the meeting, so I drive to a nearby plaza I’ve been to before. Parking underneath, I go up the escalator to the shops. I bring Chris’s booklet with me; I’ll stop in a cafe and go through it.
When I enter the plaza, the noise and crowds are an assault on my brain. I was being ambitious thinking I could look through the booklet here. I go straight into the supermarket. I’ve forgotten to bring the shopping list, of course, so I pick up what I think we need.
After the shop, I push my trolley into the parking area and realise that I have no idea of where I left the car. It’s only one level of parking, but it’s a large area. I see now that the thick columns holding up the ceiling of this concrete cavern are painted different colours for each section: lime green, rust red, mauve, sea blue. I should have made a note of which colour was on the column closest to me. I have no recognisable landmark on which to call. All I can think to do is to start on one side of the huge parking lot and zigzag up and down the rows, hoping that I’ll chance upon my car.
As I move down the rows, the sounds — slamming doors, rattling trolley wheels, loud voices, the vroom of car engines — pierce my brain like knives. Now I really am suffering sore brain. I hear a loud, mechanical hum above me; at first I think it’s from the long pipes, painted grey, criss-crossing between fluorescent tubes of light, and then I realise it’s the invisible air-conditioning system. The petrol fumes are fire in my nostrils. I’m getting overwhelmed, but there’s no quiet spot to stop and clear my head.
I keep pushing. I’m in the pink section now, but I’m not sure if I’ve passed this way already.
Soon it’s been about twenty minutes and I’m close to breaking down. Am I going to be lost in here forever? Should I ask one of the people scurrying towards the escalator or to their cars for help? But what do I say — ‘Have you seen my car?’ I’m not even sure I could pull out the words to describe it. I’m going to end up standing by the trolley blubbering, like a lost child. I’ve forgotten my mobile, so I can’t even call home. How will Anna know where I am when I don’t return?
Suddenly, there it is: the familiar green roof of the car. I rush over and quickly unpack the shopping, shove the trolley into the nearest bay, and get into the front seat, closing my eyes. Just until I feel human again.
The booklet! The one Chris wanted returned.
I don’t remember taking it out of the trolley.
Reluctantly, I leave the car to go and search the trolleys lined up in the bay. Nothing but other people’s shopping dockets. I walk towards the escalators, remembering to look back several times to memorise the view I will see upon my return. As I go up, a child coming down the opposite escalator starts squalling — the beginnings of a tantrum. Daggers pierce my brain. I walk towards the supermarket, the uniform white tiles under my feet indifferent to my plight, gleaming with perfection.
I have to hurry or someone will pick it up. I go to the fruit and vegetable bays. I might have put the booklet down while filling plastic bags. The ordered arrangements of shape and colour jar with the chaos in my mind, but I need to find that booklet.
Nothing.
I go to the service desk and wait among the checkouts, which are clicking and beeping, the bored customers daydreaming, while my brain is screaming, Get me out of here! Has someone handed in a booklet? No one has, so I leave my telephone number and turn away. I’m in a shopping mall, for God’s sake, but it’s become a warzone.
I feel awful about losing Chris’s booklet — about how incompetent I have become and how hard it is to conduct a simple trip to the supermarket. I am at the mercy of my capricious brain.
I drive home with the tinned tomatoes and the kidney beans.
A FEW DAYS after the supermarket trip, I bump into a friend in the street. He asks me how I’m recovering. I dread this question: it’s so general. I don’t know where to start or how much detail to give. I don’t remember what I’ve told him before, or if what I think I’ve told him is what I’ve in fact told someone else.
I’m getting better, I say, but I lose things, like my car keys and wallet, and I get lost in car parks.
‘I think we all notice these changes as we get older,’ he says.
‘No, it’s different from that,’ I say.
How can I begin to explain what happened at the shopping plaza? I don’t have the mental energy. I know that the week before I had the stroke these things didn’t happen, and the week after, they did. It’s that stark.
It’s not from a lack of caring, this type of comment, but some people don’t get it; they can’t imagine their brain suddenly not being there in the way it used to be. It would be outrageous to say to someone who has a broken leg and is having trouble keeping up that this is something we all experience as we age, or that they could fix their impediment if they really wanted to. I want people to simply accept it when I say, ‘I can’t do this like I used to,’ or ‘This is too hard for me now, even though it looks simple,’ without trying to downgrade my experience into something they can fathom.
The next morning, I pick up Over My Head, the book that Chris gave me. It’s a wonderful balm for what’s just happened with my friend. The author moved to New York to begin a cognitive rehabilitation program. In the prologue, she describes the disaster of her first morning: getting herself ready to go out, giving her bus fare away to a beggar, and riding public transport while her memory and concentration are shot. Yes, that’s me, but she’s even worse.
Over the next week, I lap up the pages like a thirsty dog. It describes the misery she went through, the bewilderment she — and the others she went to rehabilitation with — experienced as she found out that things weren’t the way they used to be. She writes of ‘flooding’: becoming overwhelmed and unable to make sense of what is going on, which sounds like my sense of ‘rubber brain’ and ‘fog brain’ combined. Claudia L. Osborn understands what I’m going through. I wish everyone could read this book; it explains so much. It puts into words — the words that I now don’t have easy access to — my own experience.
I decide that most people (including health professionals, except for those who work with the brain-injured) are n
ever going to understand, and I should give up expecting them to — it’s hard for them to comprehend a deficit that they can’t see or imagine.
I have already found that I gravitate towards others who have had their brain give up on them in some way. They can tune in to what I’m experiencing without any need for me to explain.
Like Doug at my ocean-swimming sessions.
Doug is a retired builder in his sixties who was conscripted into the Australian army during the Vietnam War. After he was discharged, he ran a high-pressure commercial shop-fitting and construction business in Sydney before it became too much. He had a ‘nervous breakdown’, as he called it, and subsequently left his wife. ‘Best thing for both of us,’ he told me.
Doug moved to the coast and bought a house. For a year he only slept, went for walks along the beach, and had regular sessions with an acupuncturist who, he said, was also a good listener. He’s been getting out more frequently for a while now, and he often swims with the Stingrays. ‘It gives me that social outlet. Gets me out of myself.’
I like to chat with Doug on the surf-club deck after the ocean swim. We share updates on our ‘mental breakdowns’ as easily as talking about the weather.
‘How are you, Doug?’ I asked him in one of our early conversations; he was bending over a backpack by his feet. He pulled out a comb, flicked me a glance as he straightened, and turned to look out over the sea while he slicked back his hair: Doug didn’t rush.
Finally he turned to me and said, ‘Dave, I’ve been up and down like a honeymooner’s prick lately. I think I need to get away. Life’s a shit sometimes, isn’t it?’ He put away the comb and rested his arms on the top railing.
I turned and leant on the railing beside him. ‘Yeah, it can be a shit sometimes,’ I said. We stared out to sea together.
BY NOW I’M halfway through the Brain Fitness program and I’m still noticing a gradual improvement. But I only manage thirty minutes of brain training per day; this is one limit I can’t seem to budge. Maybe it’s because I’m trying as hard as I can, and the program adjusts so that I’m always working at my mental capacity. Surely I must be one of the most motivated students Posit Science has had; it feels as if my life depends upon this working.
