How I Rescued My Brain (16 page)

‘Dad,' says Emma, ‘you were supposed to take me and Tina to camp in the morning. You were acting very strange.'

Ashley is now of an age where she thinks her father is strange most of the time and, as if nothing has happened, doesn't make any comment at all.

‘I'm sorry I don't remember any of that day,' I say. ‘Daddy is not very well.'

10

I'M SITTING IN
a fold-up chair under the pandanus palms in the southern corner of the bay's main beach. It's over a week later — three weeks after my initial hospital admission — and I've been coming here most days.

I seem to have regressed since leaving hospital. There are still financial affairs to sort out, but my thoughts get jumbled, like clothes in a washing machine, after only a few telephone calls or a bit of paperwork. 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 watch the faces of the wetsuit-clad surfboarders as they pad to the water's edge, anticipating their first wave. I'm happy to be alone. Wherever I look, a persistent dark cloud hangs over my vision, as if it is about to rain. Everything feels heavy at the moment.

I've been bringing my lunch, a book, and writing materials to the beach. Initially I tried reading
Synaptic Self
by Joseph LeDoux, a neuroscientist, but it was like trudging through thick, deep mud. I would read a page, and by the time I reached the next, I'd forgotten what the previous one had said. Then Anna gave me Elizabeth Gilbert's
Eat, Pray, Love
. It's easy to follow, and it doesn't matter if I've forgotten some of the earlier details. I like her writing, and am buoyed by her story: I'm not the only one on a path of survival.

It's mid-afternoon and I'm reading about her time in Italy when my phone rings. ‘David, it's Doctor Franklin. Anna gave me your mobile number. 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.'

‘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 sense the gravity in his voice, and feel I should respond to it. ‘What do I do now?'

‘Well, it's been three weeks since the stroke happened. If something else were going to occur, it most likely would have by now. But you should see your GP straightaway. Get some advice.'

‘Okay,' I say, and we finish the call.

A stroke. Fancy that.

I go back to reading, settling comfortably into my chair; the idea of seeing the GP slips into my back pocket. But my brain continues processing this information in its own way.

After a while, a niggling thought presses:
Perhaps I should see my GP now, or at least make an appointment? Doctor Franklin did sound serious.

So I fold up the chair, gather my things, and amble off to the car. As I drive the potholed road back to town, the word ‘stroke' rolls around in my mind. It doesn't take on any particular shape, but I know that it's a physical condition, something with medical implications, although I can't think of what they are right now.

Then, a thought comes suddenly to my mind:
If I've had a stroke, and that's physical … I haven't had a mental breakdown.
Relief floods through me.
Fucking fantastic.

WHEN I ARRIVE
at the medical centre, I announce with a smile to Joanne at reception, ‘I've had a stroke.' I feel a little important with this news. ‘My specialist says I that should see a GP as soon as possible.'

Joanne looks a bit startled. She fusses over her computer and says she can get me in tomorrow, late morning. I thank her and walk out; I feel so much lighter already.

When I get home, I tell Anna I've had a stroke. She already knows because Doctor Franklin spoke with her earlier. ‘I was so angry towards you before,' she says. ‘I thought the breakdown was brought on by your anxiety and self-absorption. Now there's an organic reason. It's just shit luck. I'm sorry.'

Overnight, I digest the news and think about what it means. By the time I arrive at the medical centre the next day, I'm feeling a little less buoyant: a stroke diagnosis flips the view I had of everything upside down.

I'm right to be concerned. The GP, upon hearing my story, says with a stony face, ‘You'll need to exercise vigorously, get your heart rate down to fifty, and lose weight.'

This sounds drastic.

She wants me to see a physician, and recommends Doctor Small. ‘He's local and has a lot of experience with strokes. What do you think?'

I have no idea what to think. I know Doctor Small as an acquaintance — his wife is in my swimming group — and he has struck me as a gentle man; he smiles a lot.

The GP rings through to Doctor Small's rooms. He says he'll have a referral for an MRA scan for me to pick up the next morning, Friday. The scan will look at my arteries to see if they are the cause of my stroke. His earliest available appointment is Friday week.

The GP also writes a referral for me to see Doctor Mercer, the ophthalmologist in town. I drop by her rooms on the way home, to make an appointment. We know each other through our teenage daughters, so when she sees me standing at the reception desk, she asks why I'm here. I tell her that I've had a stroke, and she asks if I'm driving.

‘Yes,' I say, surprised by the question.

‘We'd better check you out then, to see if you're okay to drive,' she says. ‘I'll squeeze you in after my next patient.'

Doctor Mercer's assistant takes me into a side room and sits me in front of a large metal box with two black eyepieces protruding from it. A contraption holds my chin in place so that my head doesn't move. I can see a large, illuminated circle filling my field of vision. The assistant gives me an electronic button to click whenever I see a flash of light in the circle.

Over the course of a minute or so, pinpoint flashes of light appear randomly in the circle; each time, I press the button. Sometimes there is a larger gap between the flashes, and I wonder what this means.

After this, Doctor Mercer does a thorough eye check in her consulting room. Aside from the slight shortsightedness I've always had, as well as a little bit of astigmatism, she says that my eyes are fine. Then she prints off the results of the visual-field test and clucks in recognition as she looks over them. ‘You see here,' she says, pointing with a pen to the circle on the printout, ‘you have lost a quarter of your visual field: right superior quadrantanopia.'

And sure enough, there is a neat quadrant of blackness in the upper right visual fields of each eye, as if someone's taken a large chunk out of a cake. This is why I didn't always see the flashes of light. And it explains the smudginess in my vision, which I thought was a rain cloud — it is my brain's effort to make a complete picture of the world with inadequate information.

So, my eyes are fine, the optic nerves going from the eyes to the brain are fine, but my brain (in the occipital area) is not able to process all the incoming visual sense data.

‘You should get your full vision back in no time,' Doctor Mercer says, as if it is the temporary loss of a personal possession. ‘You'll be fine to drive,' she adds, ‘as long as you're aware that you have that gap. Most of what you need to see when driving is lower down.'

I'm left feeling relieved about something I didn't realise I needed to be relieved about. The consequences of this stroke are growing by the hour. I can try to work out a way of dealing with stressors happening outside my body, but it's frightening to know that mysterious things are happening inside. My brain is seriously damaged.

The next day, I do an internet search on strokes. I find out 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!

Anna's mother, stepfather, and grandmother have come to stay for the weekend, straight after hearing of the diagnosis; it's good of them. That night I tell them I'm worried about having another stroke. They're sympathetic, but they don't seem to understand how scared I am — how I'm trying to stare down what I'm becoming certain is impending doom.

On Sunday, as they're leaving, Anna's stepfather, Gary, comes out to see me. I'm hanging up the laundry on the clothesline in the garden. ‘Don't stress,' he says, in an admonishing tone. As if I am causing my condition through worry.

‘Don't stress?' I exclaim. ‘What a stupid thing to say! I could have another stroke at any moment and drop dead. I know you mean well, Gary, but saying “don't stress” doesn't help.'

He starts, as if I've punched him. ‘Just trying to help.'

I know that he's a caring person, and he's usually sensitive in his comments. ‘Sorry,' I say, relenting. ‘It's a difficult time.' I give him a rushed hug, but it's still awkward as he leaves. I can't seem to get anything right at the moment.

OVER THE WEEKEND,
the more I've researched the consequences of my stroke, the more my mind has become flooded with questions. Should I be taking blood thinners or some other kind of medication? Should I be resting or exercising vigorously? Is it all right to read, or will that tax my brain and bring on another stroke? But I'm in limbo until I can see Doctor Small in a week's time.

Come Monday morning, I can't stand it any longer. I decide to call Doctor Small's rooms, and am put through to him. He is surprised when I explain how little I've been told so far; he hadn't realised that I'd been misdiagnosed in the hospital and that, because of this, I haven't been given specific instructions or medication. He says that I should be taking a small dose (up to 300 milligrams) of aspirin daily, that I should rest rather than exercise, and that I most likely would have had another stroke by now, if it was going to happen. I have the MRA scan tomorrow, and on Friday he will review my medication and the MRA results. He doesn't think anything will change for me until then.

My relief is instant.

The next morning, before I go for the MRA scan, I catch up with Doctor Banister, the psychiatrist, for the first time since the stroke diagnosis. It is our third session in his private practice. He has my MRI results — they were sent to Seaview, and Doctor Franklin has passed them on.

As soon as I sit down, Doctor Banister says, ‘You've had a major stroke.' He 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 asks how my memory's been, and about my mood. I'm still conscious of presenting at my best, concerned that I might be made an involuntary patient and locked up. He doesn't mention the misdiagnosis, or his part in it. He asks me how I found it being in the clinic. The staff were caring, I say, the food better than I was expecting, and it was good to have a break from the legal and financial pressures. He looks pleased to hear this.

I'd had my first session with Doctor Banister several weeks before my hospital admission. I thought it made sense to have a psychiatrist advocate for me with my insurer, because my policy required feedback from a medical doctor, and my injury was psychological. Also, I thought that a psychiatrist might have a new viewpoint on my treatment, as psychiatrists come from a more biological perspective than psychologists. Ian and I had agreed that we didn't want him to take on this role; he had recommended Doctor Banister as someone who was a strong report writer.

My initial impression of the doctor had been positive: he was friendly, smiled, and seemed concerned. But during his assessment, after each answer I gave, he swivelled his chair around and tapped into a laptop on his desk, while I sat, waiting, on his sofa. It was like being interviewed by a reporter, not someone who was developing a therapeutic relationship with me. When his questions were over, he pronounced, ‘You've had major depression. You should've been put on antidepressant medication straightaway.' He thought the treatment I'd received to date — the psychotherapy with Wayne and the St John's wort — was inadequate (even though he hadn't sought much information about Wayne's treatment approach). ‘If you'd taken an SSRI, you wouldn't be here speaking with me now,' he continued. It felt like a blunt and hasty conclusion. How could he be so certain?

I knew that SSRIs did not work for everyone, and they had a high placebo effect. By knowing these things, would the placebo effect have been mitigated for me?

Doctor Banister didn't think I had major depression anymore, so he said antidepressants weren't necessary. While he saw no merit in me taking St John's wort, he didn't suggest that I should stop.

He thought that my financial pressures were the major cause of my symptoms, not my psychology work. ‘But what about the trauma stuff: the work in jails, the victims' compensation clients, the Children's Court? I dropped in a report from Wayne to your secretary a few weeks ago about this?' I said. He seemed to be missing the whole trauma story.