How I Rescued My Brain (27 page)

‘Yes,' I said.

‘What would you like to say to your younger self, to reassure him?'

I pictured my younger self: long-haired, bearded, a man with a passion to help others. I said, ‘In the end you were not hurt. You did not deserve to be threatened in that way. You were doing your best and working in a difficult environment. You did okay. You have nothing to be ashamed of.'

My younger self was eager for reassurance from an elder. He didn't have an available senior with whom he could debrief. So, more than twenty years later, the words that needed to be said then had been said.

Wayne said, ‘Would you like to give your younger self a hug, perhaps?'

He looked so vulnerable, so alone. I gave him a good hug. I felt such tenderness for him. I understood now that he'd taken on the armour of invincibility that is part of youth's skin, treating life's insults like irritants.

I realise, after all I've learnt about the brain, that when Wayne had me go back to this memory, he was pairing the re-experiencing of this incident with my adult self, with the wisdom and strengths I now have.

The PFC gives us the capacity to think about thinking and conscious awareness. It enables us to plan, reflect, and learn, but it also enables worry and self-doubt. Was I using my PFC's capacity to override the visceral and emotional responses I was having to my work, expecting that I should cope with what was in front of me, as my mother had? Was I being dismissive of the distress smouldering within me?

As the weeks pass, I begin to put into practice new ways to engage the left PFC. Before the stroke, I'd stopped yoga and taken up Pilates after I'd injured my shoulder and couldn't bear weight on it. Also, the stroke had left me with low blood pressure and dizziness, and I realised that I needed to be active in ways that didn't involve moving my head up and down repeatedly — the experience at Nippers had taught me that. But Pilates is less strenuous, and it targets specific muscles and movements in my body, enhancing mindfulness.

I know that mindfulness and meditation soothes the arousal of the sympathetic nervous system. The more I can notice my thoughts, feelings, and bodily sensations, the better chance I will have to pause, and to respond to them differently. I try to keep reminding myself that when I experience dread, this response does not mean that I am really under attack.

Some time ago, Doctor Small had told me how much he enjoyed reading in his medical journals stories with people's firsthand descriptions of their health conditions. ‘I remember more from these personal accounts than I do from yet another double-blind research study,' he'd said. He had encouraged me to write about my experiences with my stroke. Now I know that writing about what has happened to me, and is happening to me, will activate my left PFC. It will unstick the ruminating thoughts and emotions and help me to make sense of what has occurred.

IN LATE OCTOBER,
we make a trip to our favourite national park for a two-day stay in the same guesthouse we stayed in when my sister called to give me the news that Dad was ill. This time, we're joined by another family and their two children. Their children are best friends with our youngest two.

On the first morning, we talk through our plans for the day ahead. The other parents want to do a short walk. I'm keen to make the most of this time in nature; I want us to go on a daylong hike. The children are capable of doing this, so I don't see what the problem is. As we talk further, I become aware of my annoyance: a certain tightness in my body and a narrowing of my thinking.

Then something happens: I allow myself to let go of the need to determine the outcome, to have it go my way; I soften my mental grip. Then it's easy to accept a neat compromise: the other family, their two children, and our youngest two will go on the shorter walk. I, Anna, Ashley, and her friend, who has also come with us, will go on the long walk. Solved.

I can't help but feel that the mindfulness training is kicking in and my PFC is being more assertive. It's working.

IF ONLY THE
momentum of life went in one direction, but it's wayward. The next month, things begin to slide backwards, and again I'm caught out.

Sixteen months post-stroke, the aspect that still surprises me the most is the mental fatigue I get after concentrating for a few hours. When I go past my limit for a few days in a row, it gives me a feeling of being really, really worn out, as if I need a holiday. It's become clear to me in the last few months that the fatigue is worsened by physical exhaustion, insufficient sleep, and exposure to loud noise, large groups, new people, and stress.

In late November 2010, I awake early one school morning with rubber brain, but I get up and meditate in the cubby house anyway. As I try to focus on my breath, the home phone keeps ringing, but none of the girls answer it. Who's calling, and why won't someone pick up the phone to make the noise stop?

Later, after breakfast, I feel rushed and unsettled as I make the school lunches in the kitchen. Anna has already left, so I will be getting the girls off to school on my own. The dread is with me, and it intensifies by the minute. I butter crackers, but each one I pick up breaks, my hands are shaking so much.

I can't do this. I can't cope anymore.

Impulsively, I throw my favourite cereal bowl into the sink, followed by my tea mug. The loud crash it makes is oddly exhilarating. I pick up the plastic box holding the cartons of crackers and propel it into the pantry door, as if throwing a football. The jar of Vegemite follows. A cascade of foodstuffs clatters off the shelves.

I've been trying to hold everything together, but as the year has gone on, my reservoir of fatigue has risen like floodwaters.

I phone Anna in desperation. ‘I can't cope anymore. You'd better come home now.' She tells me that she'd been the one ringing earlier.

I drive Ashley to the bus stop because she is running late again. The two younger ones are nowhere to be seen. When I come back, I find them in the kitchen, picking through the debris, commenting like disaster experts on the turn of events. The pantry floor is frothing with fallen boxes and jars, and crumbs from the broken crackers dot the ground like confetti. My cereal bowl lies in fragments in the sink.

‘I'm not angry at you,' I say to the girls.

‘Dad, having one of your three-year-old tantrums again?' Emma says, with a tentative smile.

I manage a little laugh. Her humour is a relief.

They help me to tidy up and then go out onto the verandah to have their toast. Anna arrives and goes out to sit with them.

I'm still incapable of making the lunches, so I join them. Not a lot is said. When the girls have finished, Anna offers to take them to school. I farewell each child with a hug. ‘I'm not angry with you, you know that.'

‘Yes,' Amelia says. She seems unperturbed.

Emma says, ‘Yes, but it scares me.'

The rest of the day is a blur — it's hard to concentrate on anything when I have sore brain. I pick the children up after school, and they don't appear annoyed with me. Later Ashley joins me for swim squad, and after dinner we watch
Julie and Julia
— Amelia's pick.

The next day, Anna tells me that she needs to talk. Hesitantly, she says she may be suffering from compassion fatigue over my condition. I tell her that I am not coping with the normal daily demands along with my rehabilitation commitments. Yesterday's incident has shown me I must change something, that I need a rest. I'm worried about Anna's health too; I think she needs to sleep and to exercise more.

I know that I've been reaching my limit more and more easily recently. I think what's tipping me over the edge is the work trial with James, and the extra mental fatigue this creates. My insurer has contracted a local rehabilitation manager, Matt, to draw up a rehabilitation plan for me. It includes the work with James and sessions with an exercise physiologist, as well as a new laptop, software, and ergonomic accessories for my work desk at home. They are all supposed to help me, but learning how to use them creates an added pressure. We are also looking at vocational options that don't involve me going back to clinical work.

Matt has worked with many brain-injured clients in the past, and has told me that mental fatigue is a frequent and long-lasting outcome of brain injury. He says that I need to be proactive in managing my fatigue: to anticipate demands and situations that will tire me out, resting beforehand and slotting in recovery time afterwards. But what I can't anticipate is the unexpected and urgent demands from real-estate agents, lawyers, and anyone involved in the sale and management of our properties — few of the sales have been straightforward or easy. I usually run the children around to their after-school activities: swimming classes, water polo, little athletics, dental and medical appointments. Then there are the days you can't predict, like one daughter losing her hearing aid (she has moderate hearing loss in one ear) and spilling superglue onto her pants, causing them to stick to her leg. The only way to remove the pants was to cut them off her, and then she sat in a warm soapy bath until the stuck-on patch loosened.

My fatigue worsens on the weekends, with physical exertion and the cumulative effect of the noise and demands of the children. On Mondays, I often have a hangover-like effect until Tuesday morning, when my brain finally allows me to be productive again, and I can start on James's work.

Anna thinks it would be good for me to go away for a time, so we can all have a break. ‘India, or to study a course,' she says. To help with the daily demands, she suggests the children make their own lunches and that Ashley get herself ready early enough to walk to the bus stop.

Her suggestion to go away plants a seed in me. Even though I'm making progress, I haven't got there yet. Time out might be just what I need right now.

16

THE RAIN THUDS
on the car roof as the wipers shift the deluge from the windscreen. Overtaking vehicles send curtains of water at me. It is 6 January 2011, and I'm heading north, to Hervey Bay.

Before Christmas, I decided that a meditation retreat in a place of silence and calm, without the family, would be the ideal spot for me to recuperate from my accumulated fatigue. But I couldn't find anything to fit my dates and budget. So I phoned Choeying and asked if I could come and stay with her.

‘Yes, of course, darling,' she said, sounding delighted. ‘How's that for karma in action for you: there is another brain-injured person coming to stay in January. You can join us for the calm-abiding course I'll be facilitating.'

In the middle of last year, there was a call-out in our community for billets for people attending a teaching given by a visiting international Buddhist teacher I'd not heard of before (Dzongsar Jamyang Khyentse Rinpoche). I hadn't intended on going, but I wanted to help out, as others had helped me to attend various courses. Anna agreed too.

When I'd picked up our assigned billet from the bus station, she turned out to be a Tibetan Buddhist nun, Choeying (her spiritual name, pronounced
Chur-ying
). After we talked for a while, I realised that she was the shaven-headed person in maroon and yellow standing at the front of the cordon in the hotel lobby, waiting to greet the Dalai Lama, the same day I met him.

Over the course of the nine days that Choeying stayed with us, Anna and I each talked with her. I quickly sensed that I could trust her and could speak frankly. I told her how panicked I was about our finances; I was worried about the effect that bankruptcy would have on the children's lives. She said that great suffering could be a curse, or a blessing or gift, depending upon how we saw it — it offered the opportunity for change, to discover humility and self-compassion. If I managed it with grace and equanimity, the children would model that. They did not need to have everything given to them, or they would not learn gratitude and resilience.

I found her advice to see my present situation as a ‘blessing or gift' a bit weird, and not overtly helpful. Still, like others I had gravitated towards — such as Wayne, Doug, and Doctor Small — I felt calm in her presence. Somehow, it tamed the dread. At the end of her stay Choeying invited us to visit her, and January seemed like the perfect time to take her up on it.

It's been a long drive, and by now it's late afternoon. The last of the daylight is fighting with the darkening sky. The raindrops become heavier, until they sound like tribal dancers on the roof. I will need to stop for a break soon.

I wonder about the wisdom of my decision to head north during the tropical summer season. Not long before, on the approach to a new town, I came over a rise in the road and was confronted with large lakes on either side of the highway, water nipping at the edges of the bitumen. A few more hours of this rain and I'll be cut off from home.

But I put these thoughts aside. Since the stroke, I've learnt to trust my intuition. My recovery has shown me that I need to go to uncomfortable places sometimes.

I've gone through a lot of discomfort in the last twelve months, but I've made progress. In early 2010, Anna and I made the heartbreaking decision to put our home on the market, but it took until late December 2010 to sell. The buyer couldn't move in for a few years, so now we're renting it back from them. Once the sale is settled, we can pay back the loans from our family and friends. We've sold the investment properties that were saleable and paid out their respective mortgages, leaving only those that won't achieve a sale price sufficient to pay out their loans. I'm gratified with what we've achieved; financially, we've got through a lot this year, although it's been about mitigating our losses rather than making any gains.