by Heidi Norman
Not long afterwards, the specialist comes in and stands by my bed, with a young female doctor. He asks me how I’m feeling.
‘I’m woolly in the head,’ I say. ‘I’ve got a mild headache, too.’
He says that the blood tests came back normal, my heart is fine, and the CT scan did not show any problems with my brain. He turns to his colleague: ‘It’s not TGA.’ He doesn’t realise that I know what this is: transient global amnesia. A brief episode of memory loss, cause unknown. The psychologist in me is disappointed; it would be an interesting clinical experience to have. I tell him what Dr Banister said. The specialist says he will request a review by a hospital psychiatrist in case Dr Banister doesn’t get in to see me. He’ll order some new blood tests. He wants me to stay for another night so that they can monitor me. After this, if he’s satisfied, I can go to Seaview.
* * * * *
It’s dark when Anna and I arrive home from the hospital the following evening. The house is quiet and cool. With cups of Ecco, Anna and I sit down at the dining table. ‘What happened yesterday?’ I ask.
‘I got up in the morning and you were wandering around the house. You had your business jacket on – that’s the first thing I thought strange. And you asked, in a sort of dreamy monotone, “Anna, what am I supposed to be doing?” I said, “You’re taking Emma to camp after breakfast.” A few minutes later, you asked me the same question. You were white and your skin was icy. I sat you down at the table with a heat pack around your neck.’
‘I don’t know if it was a dream,’ I say, ‘but were we in the Tarago and I … vomited? Does that make sense?’
‘Yes. On the road to Lismore, you let down the window and almost threw yourself out while you vomited. We were doing a hundred kilometres an hour. I think you would’ve ended up on the road if I hadn’t grabbed your shirt.’
I’m amazed.
After I retire for the night, the only sound in the house is Anna as she goes about doing things. I settle into the quiet, with the darkness closing around me. My body lets go, muscle by muscle.
Then, the pieces of the puzzle begin to join and a picture emerges: I’ve finally lost it. I’ve had a mental breakdown.
* * * * *
The next morning, Anna and I arrive at Seaview. Anna is wearing her business lipstick: the deep crimson. Her wonderful smile is hard to imagine now, her face is so taut. We sit in silence in a quiet, carpeted corner beside the reception desk.
There are four doors leading off the waiting area. On each, above the word ‘psychiatrist’, is a doctor’s name. With the location of their rooms, at the bow of this elongated building, these psychiatrists are like captains of the ship. Eventually the door nearest us opens, and the long figure of Dr Banister appears. He’s wearing his trademark tweed jacket. ‘Come in,’ he says, looking concerned.
We follow him in.
‘Tell me what happened … before you took David to hospital?’
Anna begins. Almost immediately, it becomes clear that I am superfluous to their conversation. That’s okay with me. The rise and fall of their voices becomes the sound of summer insects – an aural backdrop as I explore the corners of the room. I notice that it has five unequal sides, like a warped pentagon.
I’m still not sure if I’m dreaming, or if what’s happening is real. I might be Alice, and a white rabbit will appear at any moment.
Dr Banister asks me a question, yanking me back to reality. ‘David, what do you think brought this on?’
I really am in a psychiatric establishment.
* * * * *
Three weeks later, it’s a Friday and I’m in a fold-up chair under the pandanus palms on the bay’s main beach. I’ve been coming here most days since my release from Seaview.
I seem to have regressed since leaving. My thoughts get jumbled, like clothes in a washing machine. My brain is in a fog most of the time. Here, the world is simple and doesn’t demand things of me. The shushing of the waves and the sticky brush of the sea air soothe me. I’m happy to be alone.
There is another strange thing. Wherever I look, a persistent dark cloud hangs over my vision, as if it is about to rain.
I’m reading Elizabeth Gilbert’s Eat, Pray, Love when my phone rings. ‘David, it’s Dr Franklin, Dr Banister’s colleague from Seaview. I’m sorry, but I’ve got some unfortunate news. We made a mistake. The result of the brain MRI you completed yesterday shows that you’ve had a stroke.’
‘Oh.’ My brain is slow to process this information.
‘I’m sorry it wasn’t picked up earlier,’ he says. ‘It’s affected the occipital region – the vision area of your brain – with some minor bleeding in other parts. Have you noticed any disturbances in your visual field?’
‘I don’t think so,’ I say. I’ve forgotten about the dark cloud. ‘What do I do now?’
‘Well, it’s been three weeks since the stroke. If something else were going to occur, it most likely would have by now. But you should see your GP straightaway.’
‘Okay,’ I say, and we finish the call.
Later that day, the GP, upon hearing my story, says stonyfaced, ‘You’ll need to exercise vigorously, get your heart rate down to 50, and lose weight.’ It sounds drastic. He refers me to a specialist. The consequences of this stroke are growing by the hour.
* * * * *
Over the weekend, I digest the news. I do an internet search and find that following a first-time stroke, one in five people die within a month, and one in three within a year. I’m still within the critical period to have a second stroke. Shit. I could keel over at any moment, or become paralysed, or be unable to speak – be trapped in my body!
The more I research the consequences of my stroke, the more my mind becomes flooded with questions. Should I be taking blood thinners? Should I be resting or exercising? Is it all right to read?
Come Monday, I can’t stand it any longer. I decide to call the specialist’s rooms. Dr Small is surprised when I explain how little I’ve been told so far; he hadn’t realised that because I’d been misdiagnosed in hospital, I haven’t been given specific instructions. He says that I should be taking up to 300 milligrams of aspirin daily, and that I most likely would have had another stroke by now, if it were going to happen. When we meet he will review my medication. He doesn’t think anything will change until then.
When my appointment arrives, I find myself sitting in Dr Small’s waiting room. He comes in. ‘David, good to see you, although I guess not in these circumstances.’ He extends his right arm and we shake hands; his handshake is firm.
The practice is in an historic, impeccably renovated house. His room is spacious, and, while obviously medical, almost homely. I see a photo of his son playing football.
He shuffles through the MRI and MRA scans unhurriedly, every now and then placing one up on the light box beside his desk. I notice his broad shoulders and short, greying hair. He has a military-style moustache, which, I think, makes him look distinguished rather than unfashionable.
‘You’ve had a major stroke,’ Dr Banister had said. Dr Small shows me the film: the area of the lesion looks about the size of a golf ball. ‘You’re looking good, considering this. It’s amazing.’
He squints, examining the scan, and points his finger to show me how my left cerebral artery, at the back of my head, caused the stroke with a blockage: ‘an infarct’, he calls it. I have an area of damage extending from the left occipital lobe into the left hippocampus. This region borders on the left temporal lobe. The occipital lobe processes vision and images, the hippocampus processes everyday memory and factual memories, and the temporal lobe processes sound and speech, and long-term memory.
‘Your arteries are fine,’ he says. ‘There are a few more investigations we can do, but my guess is that we won’t find anything, and your condition will remain idiopathic: a fancy medical term for “we don’t know”.’ He explains that it could have been a random blood clot that found its way into the cerebral artery. I don’t have th
e usual risk factors for a stroke: no family history, no hypertension, normal lipids, and I’m not diabetic. I don’t smoke and I have a modest alcohol intake. At 51 years, I am a ‘young stroke’.
Since I’ve been out of Seaview, I get incredibly tired, and often sleep during the day. I tell Dr Small how fatigued I become with walking, and that light gardening takes me the rest of the day to recover. I explain that I’ve forgotten a lot of words, too. It’s different from having a word on the tip of the tongue: some words have gone. I’ve forgotten the names of acquaintances, although I remember those of friends and family – but even so, I have to think about these, to recall them, in a way I didn’t need to before.
I also have an almost constant low-grade headache. When I drink a glass of wine, the hangover-like effect lasts for a day or two after.
Dr Small says that there’s not a lot I can do. He doesn’t think that I need to take blood-thinners, but recommends 100 milligrams of aspirin daily as a preventive measure.
‘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, Dr Small has the latest test results. All is normal. It’s good news, but the cause remains uncertain – so there are no pointers to what might happen in the future.
The only physical sign Small finds is low blood pressure: it’s 100 over 65. He wonders if how easily I tire with 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.’ The risk of another stroke is low, he tells me. ‘Time is your best friend.’
‘What about stress?’ I ask.
‘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.’
‘Why did the CT scan at the hospital come up as negative?’ I’m still puzzled by the misdiagnosis.
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 51-year-old male and suffering from post-traumatic stress disorder. A stroke for someone like you is far more likely than a fugue state, which is rare. 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. But in the end, I don’t think the misdiagnosis has changed the outcome, medically speaking.’
That night at home, I pull the CD of the MRI images out from the radiography envelope. Once it is inserted into my computer, I watch the ghostly images of my brain as I click on different views. They’re both beautiful and unsettling. Here is the wonder that makes me human, and here is the damnable thing that gives me nightmares, panic, and confusion. It’s a love-hate relationship with my brain at the moment.
* * * * *
A month on, and this stroke thing is a process of discovery. The invisible hole in my head is a trickster; I don’t know when it’s going to trip me up next. Some days my brain decides to work, and other days it’s like a sullen teenager, refusing to cooperate.
Over weeks, I work out which activities bring on dizziness. They often involve physical exertion, such as swimming and long walks. Gardening and packing the dishwasher also bring it on; I think this is because of the up-and-down movement of my head. Physical fatigue 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, stumbling across the page. I can’t multitask – 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 – I have to work out, by a process of detection, what I was doing before. 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 complex books, I 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. The ideas don’t hang together – they’re like a string of beads with the string taken out.
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.
I do most of the grocery shopping, and without a list it’s disastrous. Once at the supermarket, I have little memory of what we have at home. List-less, 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 profusion of these in the pantry.
Each time I return home, I have to place my keys and wallet precisely in the left corner of the sideboard. Yet often I forget. When I need them next, I panic, searching the house with no idea 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. When someone asks an open-ended question, I see the confusion on their face if 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 ever.
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 or how to do something. I often have to withdraw, or explain that I simply don’t understand.
The second level, ‘rubber brain’, occurs when I’ve been concentrating too long: the conversation has gone on for more than 30 minutes, or the noises around me have sucked my mental energy dry. When someone speaks to me, I have the sensation of words bouncing off my brain: nothing comes in and nothing goes out. It’s time to stop and recuperate.
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 buddies, James and Phillippa. I wasn’t keen on going, as conversations were tiring, and there would be a crowd and music. But I went because they’re good friends.
I arrived early. The music was low, no more than background noise. I talked with a few others. 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 water, talking with a young lawyer. I hadn’t told her about my stroke; I wanted to see how I’d go being normal.
Then she disagreed with something I’d said. Her eyes were fixed on me: she meant to get her point across. 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 were like darts in my brain. My skull felt too small, as if my brain 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 jabbering bodies, and burst out into the night. The noise from the house exploded outwards behind me.
I walked a few houses’ length along the ro
ad. This was better, but my brain still hurt. I looked up into the sky. Ordinarily I enjoyed the stars, but tonight they seemed as 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 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.
Half an hour: that’s all I’d lasted. What a miserable thing a brain injury is.
* * * * *
A few weeks after the stroke, an ex-colleague had lent me two books: My Stroke of Insight by Jill Bolte Taylor and The Brain That Changes Itself by Norman Doidge. It’s taken me a while to get round to reading them, but I feel ready now.
Taylor’s book looks the easier. Soon I am riveted by her account of the early stages of her left-sided stroke, which occurred as she was getting ready for work. The onset of my stroke happened while I was asleep, and I didn’t get the extreme motor loss she did. But she describes the sense of peace and connectedness that she experienced immediately after her stroke – something I also experienced.
What I find most comforting is the final section. Taylor lists the things she needed in her recovery. I identify most with her need for sleep; for others to speak slowly and softly; for a reduction in stimulation from electronic media; and for others to ask specific questions rather than general ones, giving time to answer.
I start to sense that my brain is not a black box, but a menagerie of characters. They begin to take on personalities: the amygdala is highly strung, an overanxious protector; the hippocampus is a methodical organiser, the cataloguer of memories; the prefrontal cortex is the master controller – at times over-serious, at times visionary and creative, and often at loggerheads with the amygdala. Then there’s the mysterious limbic system: the emotional and impulsive one. The dutiful hypothalamus, the accelerator pedal of the fight-flight response, makes hormonal decisions, together with its compliant cousin, the pituitary gland.
