How I Rescued My Brain

by David Roland

  When I mention Doctor Banister’s assertion that I wouldn’t have had the stroke if I’d been on antidepressants, Doctor Small responds with a look of bemusement.

  Since I’ve been out of hospital and gone back to normal life, I’ve been buckling under daily demands that, before the stroke, were manageable. In Seaview, I only needed to look after myself: there were no chores to be done, and I could rest and go to quiet places whenever I needed to. Now I get incredibly tired, and often sleep during the day. I tell Doctor Small how fatigued I get with general walking and light gardening, and how it takes me the rest of the day to recover.

  I explain that I’ve forgotten a lot of things, too, such as general facts and names (of actors, writers, musicians, song titles, movie titles). It’s different, I say, from having a word on the tip of the tongue, one that you know will come in time: some words have completely gone. It’s as if they’ve dropped off the back of a truck, scattering along the roadside, and I’ve kept on going. I’ve forgotten the names of acquaintances, although I remember the names of close friends and family — but even so, I now have to think about these, to recall them, in a way that I didn’t need to before. Conversations are tiring. In the middle of speaking, I lose track of the point I’m trying to make.

  I also have an almost constant low-grade headache, I tell him. When I drink a glass of wine, the hangover-like effect lasts for a day or two after. I like a glass of wine now and then, and the occasional beer, but the consequences are not worth the pleasure of a drink.

  One good thing, I tell him, is that I can sing and play music as I did before. It’s harder to remember the words of songs, but hitting the right notes is the same.

  Doctor Small says that there’s not a lot I can do. He doesn’t think that I need to take blood-thinning medication because of the condition of my arteries, but recommends 100 milligrams of aspirin daily as a preventive measure. I am to take it easy and avoid stress as much as possible.

  ‘What about cognitively?’ I ask.

  ‘Read, but nothing harder than the newspaper,’ he says.

  Good. I should be fine with Eat, Pray, Love then.

  TWO WEEKS LATER, Doctor Small has the latest test results. The bloods are all normal. I have no inflammation of the arteries, no heart condition, and no problem with the carotid arteries. It’s good news that I don’t have any of the nasties, but the cause remains uncertain — so there are no pointers to what might happen in the future.

  The only physical sign that Doctor Small finds is low blood pressure: it’s one hundred over sixty-five. He wonders if how easily I tire with minimal physical activity is because of damage to the cardiovascular centres in the upper brain stem. The MRI, he says, is not going to show everything. ‘It’s unusual for a doctor to recommend this, but I’d encourage you to have more salt. And keep up your fluids.’ He tells me to walk only on flat ground — no steep inclines — for the time being, and to avoid swimming. I’m doing a Pilates session once a week, and he thinks this is okay.

  The risk of another stroke is low, he tells me. ‘Time is your best friend.’

  ‘What about stress?’ I ask. I’ve told him of the financial pressure we’ve been under, and about my anxiety attacks. ‘Could this be a cause?’

  ‘I couldn’t stand up in a courtroom and say that your stroke was caused by stress; no doctor is going to do that. The medical science behind that is unclear. Personally, I believe that stress can cause a stroke.’ And he tells me of a close friend who he said had worried himself into a stroke.

  There’s one other thing I’m still puzzled by — the misdiagnosis. I know that Doctor Small ran a stroke unit in Melbourne before moving to our area, so he might have some idea of what the doctors were thinking. I lean forward. ‘Why did the CT scan at the hospital come up as negative?’

  He says that it’s normal practice to order a CT scan immediately if a stroke or a transient ischaemic attack (a ‘mini-stroke’) is suspected. But a negative CT scan does not rule out stroke: the damaged area of the brain can appear normal soon after onset; the stroke region may be too small to be seen on a CT scan. An MRI is more accurate, but it takes longer and is harder to arrange. ‘Diagnosis is a matter of probabilities. Your only risk factors were being a fifty-one-year-old male and suffering from post-traumatic stress disorder. A stroke for someone like you is a far more likely outcome than a fugue state, which is rare. I often tell my medical students, “If you hear hoof beats in Texas, it’s unlikely to be zebras.”’

  He explains that a neurologist should have seen me within twenty-four hours, but the hospital doesn’t have a neurologist, or an MRI machine. ‘In your case, I would’ve arranged for an MRI at the radiology centre up the hill, and given you a big dose of aspirin as a matter of course.’

  I mention that I’ve read something about a medication that reverses a stroke. ‘You mean plasminogen activator?’ he says. ‘It breaks up blood clots in the arteries of the brain. To work, it needs to be injected within six hours from the onset of symptoms. It was probably too late for you. In the end, I don’t think the misdiagnosis has changed the outcome, medically speaking.’

  This is reassuring. My stroke happened during the night, and Anna got me to hospital as fast as she could: faster, she reckoned, than if she’d called the ambulance. We did all we could.

  THIS STROKE THING is a process of discovery. The invisible hole in my head is a trickster; I don’t know when or how it’s going to trip me up next. Some days my brain decides to work, and on other days it’s like a sullen teenager, refusing to cooperate for no clear reason.

  My body’s not behaving properly either. In Seaview, it took me several days to get up to a reasonable walking speed, but now, at home, I seem to have regressed. I walk daily into town, a distance of a kilometre, to pick up the post, do a bit of shopping, and stop for coffee at my favourite cafe. Marion is one of the regular waitresses I like to chat with; she is a singer in a reggae band.

  One morning, I’m standing at the counter as she takes my order when she says, ‘Dave, you’re scaring me. You’re wobbling from side to side. Come and sit down.’ She guides me over to a chair.

  After the coffee and a rest, I head home, walking like a frail old man.

  What is happening to me?

  Over some weeks, I work out which activities bring on dizziness. They often involve physical exertion, such as swimming and long walks. Gardening — especially weeding — and packing and unpacking the dishwasher also bring it on; I think this is because of the up-and-down movement of my head. Pushing the lawnmower brings on extreme fatigue, and I need to lie down afterwards. Physical fatigue also drains my mental concentration, and then everything is harder.

  I’m bumping into things on my right side, too. The grip in my right hand is not quite there, and more than once I drop cups onto the kitchen floor. My handwriting is clumsy, as if my right hand is drunk and stumbling across the page.

  I can’t multitask anymore — or perhaps it’s more that I can’t filter out distractions. I need to complete one thing before moving on to the next. If I’m derailed from my mental tracks — say, if someone speaks to me or if the phone rings — I have to work out, by a process of detection, what I was doing before the derailment. If this fails, I turn to the next thing that comes to mind, and I forget to return to the first task. When I read professional books, I can usually get the gist of the concept I’m reading about, but once I reach the next idea, a wall goes up, separating what I’ve just read from what I’m reading next. The ideas don’t hang together — they’re like a string of beads with the string taken out. I’m left with an attractive but useless pile of beads.

  Each morning I write a to-do list, which I carry around with me. This is my best strategy for staying on track — so long as I can remember to take the list with me. But on the days when I wake up already worn out, I stare at the paper, waiting for items to surface
in my mind. Nothing comes. Then I have no strategy.

  I do most of the grocery shopping, but without a list it’s disastrous. Once I’m at the supermarket, I have little memory of what we have at home. If I have made a list, I’ve often forgotten to take it: so many things divert my attention that it’s like going through a mental minefield before I get out the door. So, listless, I cruise the shelves, dropping things into the trolley as if we have nothing at home. I’m always compelled to buy two cans of tinned tomatoes and a tin of kidney beans. Even the kids have noticed the growing profusion of these in the pantry.

  Each time I return to the house, I have to place my car keys and wallet precisely in the left corner of the sideboard. But often I forget, and they end up wherever I happened to put them down. When I need them next, I panic, searching the house with absolutely no idea of what I’ve done with them. If the kids are around, I call out to help me look; they usually find them quickly. Sometimes the keys are on the sideboard, but to the right of the corner. I appreciate how much my brain was coordinating my everyday life — now, I’m like a car without a steering wheel.

  When I need to make a decision on the spot, or under a time constraint, I become overwhelmed. I go into freeze mode, like a frightened animal. If someone else is there, I want to run away, my body telling me that this is the only way to escape this feeling of being under siege.

  I also freeze when people innocently ask an open-ended question — say, Anna might ask, ‘What would you like for dinner?’, which is a much harder question than one requiring a yes-or-no response. For me, it’s like having to find files in a rusty old cabinet; I have to extract the meaning of the question first, locate the file on dinner options, sift through these, and then make a decision on what I feel like having. I see the confusion on the questioner’s face when I can’t respond to what seems straightforward. In time, I learn to say, ‘I can’t answer your question right now’ or simply ‘You decide’. My brain is working slowly, but the rest of the world is going as fast as it ever was.

  Something else has changed. I’m attending a stream of medical appointments and often getting lost. It’s ridiculous: I’m disorientated when driving to familiar places and, sometimes, even on the way back home. I don’t feel stupid, just … incompetent. When I tell Doctor Small about this, he calls it ‘topographical disorientation’. I buy a GPS for the car, and the struggle to learn how to use it is worth the effort. One less thing I need to rely on my brain for.

  I work out that I have three levels of brain incapacity. The first is ‘fog brain’. It comes on like a mist descending. I’m unable to understand what’s just been said to me, or what’s being asked of me, or how to do something. I feel like a child around adults who are making decisions about me — powerless to influence the outcome. Financial and legal matters, in particular, bring on fog brain. In these situations, I often have to withdraw, or explain that I simply don’t understand.

  It’s fog brain that makes me decide to start sending out a regular email to update friends, family, and acquaintances on my recovery. When someone asks me, ‘How are you going?’ with that concerned look, I’m flummoxed. They don’t realise how exhausting it is to explain. I can’t tease out the most important thing to say, what I may have told them before, and if I would be repeating myself (as I often do). Usually, I just reel off the latest test results and my latest symptoms. So I make up an email list of those I think would be interested, and add any person who enquires about my health.

  As my thinking starts to improve, I begin to really enjoy writing these updates. I can create for myself a little virtual world, pretending that nothing bad is happening outside of my stroke, and let my sense of humour creep into the words. I refer back to earlier emails to avoid repetition and to make it a continuing story. Some of my readers, when I meet them in person, tell me that they look forward to my updates or that they feel they’re on the journey with me.

  The second level of brain incapacity, ‘rubber brain’, occurs when I’ve been concentrating too long: the conversation has gone on for more than thirty or so minutes, or the noises around me have sucked my mental energy dry, or I’m speaking to a new person who wants to know all the details of my story. With rubber brain, when someone speaks to me, I have the sensation of his or her words bouncing off my brain: nothing comes in and nothing goes out. It’s absolutely time to stop and recuperate. I often think that it’d be startling for these people if they could see how their words seem to ping off my brain.

  The worst level is ‘sore brain’. I first discovered this stage a month after the stroke. I had been invited to an engagement party for two of my swimming buddies, James and Phillippa. I wasn’t keen on going because conversations with new people were by far the most tiring. And there would be a crowd and music. But I went because they’re good friends.

  Lily gave me a lift, and we arrived early. I talked with the few others there. The music was low, no more than background noise. I thought, This is going all right.

  But half an hour later, the house was full of people. I ended up squashed in the kitchen, holding a glass of sparkling water, talking with a young lawyer. I hadn’t told her about my stroke; I wanted to see how I’d go being normal. We’d been talking loudly to be heard over the din.

  Then she disagreed with something I’d said. Her eyes were fixed on me: she meant to get her point across. It was at that moment the change happened: suddenly, I couldn’t understand what she was saying; she may as well have been speaking a foreign language. Her words, the conversations around me, and the music were like pins or darts in my brain: my head hurt, not as it does when I have a headache, but as if I was being stabbed. My skull felt too small for my brain, as if it were trying to get out.

  I had to leave. I told the lawyer that I needed fresh air; she gave me a disdainful look in response. I pushed along the corridor, through the bodies jabbering like cockatoos, to the front door, and burst out into the night air. The noise from the house exploded outwards behind me, like a massive fart.

  I walked a few houses’ length along the road; it was a quiet cul-de-sac. This was better, but my brain still hurt. I looked up into the clear sky. Ordinarily I enjoyed the stars, but tonight they seemed as coolly distant from me as the old me did — the one who would’ve jousted with the lawyer, tolerated the music, and thrived on meeting new people.

  I wanted to wait until Lily was ready to go. I sat, stood, walked, and paced, wrapping my arms around myself as the cold sank in. The pressure in my brain was unrelenting. God, this is awful. Eventually I walked back into the house, found Lily, and told her I wasn’t holding up too well. I felt like a killjoy. She said that we’d go soon. I went out and walked up and down some more.

  Half an hour of the party: that’s all I’d lasted. What a miserable thing a brain injury is.

  11

  I GATHER THE kids, and we sit on the verandah. It’s time for us to have a talk. I’ve been getting sore brain frequently at home. The household noise and the kids’ demands, on top of my usual activities, have been tipping me over the edge.

  ‘Girls, you know how I’ve had a stroke and my brain’s not working like it used to?’ I say.

  They nod like this is old news.

  ‘Well, when I’m really tired I get a sore brain.’

  The younger two laugh. Ashley is inspecting her nails.

  ‘My brain really hurts, like I have a bad headache, when there is lots of noise or when I’ve been working. If I say I’ve got a sore brain, I need you to stop asking me for things and leave me alone for a while. So I can sleep or go for a walk by myself.’

  ‘Oka-ay,’ the younger ones say.

  Looking at Ashley, I say, ‘Did you get that?’

  ‘When you’ve got a sore brain, we have to leave you alone,’ she recites. She glances at me with that expression: the type perfected by teenage girls, which demotes the parent to the status of
a worm.

  After that, the girls do try to leave me alone, when I tell them that I have sore brain. I don’t always get enough time to fully recuperate; the sore brain doesn’t always go by the next morning, leaving a hangover-like trace. But it is a help.

  Yet I don’t think Anna completely understands that I can’t meet the usual family demands as I used to. After all, she has relied on me, as I have on her. When I’ve got sore brain and she wants a decision from me, or we need to work something out, all I can say is: ‘My brain’s not working.’ Often then I see a look on her face that is a mix of frustration and doubt. Once, she says: ‘When will it be working again?’

  One Thursday, six weeks after the stroke, Anna calls me to join her for lunch at a cafe. This is nice; we haven’t done it for a while. We sit outdoors under a leafless poinciana tree, which is letting through the lukewarm winter sun.

  After ordering, she says, ‘Dave, I’d like to talk about how we do the separation.’ It is said in a matter-of-fact way, as if we’d agreed that this was on the agenda for discussion. She waits for my response. But I’m dumbstruck.

  Eventually I say, ‘I can’t talk about this right now. I thought we were going to review everything at the end of the year … after all the financial stuff was out of the way?’

  She looks taken aback, as if I’ve pulled a rabbit out of a hat, and it stalls the conversation.

  When we’d started the relationship counselling, the agreement was that we would commit to staying together for six months while we worked on our marriage. After Anna returned from overseas and these sessions finished, she didn’t raise the issue of separation again — or if she did, I’d been too preoccupied to register it.

  In my early days of seeing Wayne, she would often ask, ‘Did you speak to Wayne about us? About the family?’