Part of caring for ourselves includes one issue I still find fairly tricky at times. This is the issue of autonomy and responsibility. From time to time, I find I am in disagreement about my treatment, but this is always and only when I am very unwell. The medical profession—even the kindest, most compassionate doctors—is still, occasionally, unable to respond as empathetically as an angry, unreasonable patient demands. The doctor sees the patient as a very ill person who needs to hand over control at this time and let the doctor take responsibility. I see myself as fighting tooth and nail to preserve the tiny bit of autonomy I still have. To give up everything is total surrender. There have been times when I have become hysterical with rage and fear and despair, and railed against my psychiatrist. As I said before, mentally ill people are not generally very pleasant. Not for us the ‘oh, thank you, doctor’, ‘you saved my life, doctor’, ‘I’ll never forget you, doctor’ that the organ transplant surgeons must hear all the time. Mentally ill people are generally very angry and will often lash out. In my defence, I must say my psychiatrist and I have always talked it over afterwards, with mutual apologies, and we remain good friends. But the best way to avoid these confrontations, to care better for yourself, is to decide on the lines of autonomy and responsibility when you are well and try to set it all out clearly beforehand.
I know my daughters hate it when I talk about ‘having my affairs in order’, but I consider it a duty—and not just for mentally ill people. My will is up to date and my finances are in order. If anything tragic were to happen, it would make matters easier to sort out for the family. I have also appointed an enduring Power of Attorney who could take over all my affairs if I became very incapacitated.
Obviously we should all try to be as healthy as possible— eat properly, exercise, everything in moderation etcetera, etcetera. How dull it sounds, particularly when you’re on a bit of a high and feel fantastic. I try—sometimes I fail. I’m not a huge eater and I tend to skip breakfast too often. When I am in a hypomanic period before the onslaught of depression, I tend to shovel savoury biscuits down my throat or eat a whole chocolate bar, even though I don’t normally have a sweet tooth. I used to drink more than was good for me. For this reason, I gave up alcohol. When the depression hits, the desire for any type of food or drink, except cups of tea, vanishes.
I do have an exercise regime, though, and I love it and feel something special is lost from my day if I miss it. Following the example of a dear friend of mine, about fourteen years ago I learnt to swim properly and now swim summer and winter in the harbour, although I don’t jump off harbour walls and swim out to the various islands as she— crazy woman—does. I feel reborn every time I emerge from the water. In winter it gets really cold and I tell myself that the band of steel that I feel around my forehead is amateur ECT and is shocking my brain naturally! Some people consider that remark to be in extremely poor taste!
Which leads me to another way of looking after myself. Without laughter, my life would be dull indeed. When a distressing period is over, I try to turn it into something which I can laugh about—maybe the more endearing habits of some of my fellow patients that I mentioned before. This is not denial. It’s a relief for me and those who love me. It’s a sign to myself that I have survived another bout. Unfortunately, in the early days, this led the sceptical to think that I had not been ill at all—or certainly not as ill as I had appeared to be. It perpetuated the myth that I was acting or looking for attention or putting it on. In reality, there is precious little to laugh about after a serious depression. Moderate highs are much better sources of laughter, and my children have many stories that have entered the family folklore from those times.
It has been important for us to learn the signs that might indicate I am in for an episode. My sleep pattern is always the first thing to alter. I may only get two or three hours a night, and sometimes none at all—and initially I don’t mind. There is always so much to do. My medication is usually jacked up as high as I can tolerate when this happens. I often start on new projects and feel very energetic, and it is very difficult to slow down when you feel you can achieve so much. Gradually my face starts to show what is happening. The dark circles under my eyes get darker and my eyes themselves lose their alert, lively look. They become duller somehow.Vitality slowly drains away, leaving an empty shell. Then I have lost the battle for good health. A depression sets in.
But, in my quest to be as healthy as possible, I decided a few years ago to return to studying. As George Bernard Shaw said:‘Youth is wasted on the young’. When I did my Bachelor of Arts degree in the mid-1960s, I had no idea of where—if anywhere—it would lead me, except I wanted to get married. I needed to get married. Then, I imagined, my real life would begin. Up until then it had all been a waiting game.
Now I wondered what it would be like to find out what real study was like. I wanted the challenge and I wanted to find out if my brain cells, my reasoning and analytical skills had been affected by my illness. I undertook a Masters degree in Criminology at Sydney University Law School, and it has excited and rejuvenated me more than anything else over the past decade. To sit in the library or at the computer researching because I wanted to, to do far more than was absolutely necessary because I was so full of the joy of learning,was a rich contrast to my BA days. I have now graduated and miss the stimulation enormously. During this time, I thought it would be appropriate to have a go at writing a crime novel. It was great fun to do, but it has not been published. Maybe I’ll go back to it, but on the whole I prefer to write about other things.
I have noticed that Jessica is like me in wanting to set herself challenges. She gets what she calls ‘restless’ when she hasn’t got a new one. That was the reason she set about gaining her Masters in International Studies, graduating in 2003.
But, practically speaking, it is a pity that I did not equip myself better to earn a living. Having finished my Masters, I now feel that I could have undertaken almost any degree when I was first out of school and been successful. Because of my paltry BA, I have had to be a jack-of-all-trades, picking up work wherever I could find it—freelancer, writer, tour guide, bookseller, sales rep, voice-over work, as well as my time as an office manager and at SBS TV. It made life precarious and anxiety-provoking when the family was growing up—as any single mother would recognise.
I will probably always be basically a jack-of-all-trades, as I don’t think any employer would hire me on the basis of my CV—too many unexplained gaps, year after year! Besides, I don’t want to work full-time anymore, and luckily I don’t have to. I want to continue writing my novels and short stories about the valiant people I admire most—the margin-alised— with their acts of amazing grace and courage.
I am not good at balancing my time when I am writing. I become totally involved and don’t want to let go of my story. Ideas flood my brain in the hypomanic period.
Monday, 15th. Trying hard to be ‘good’, not over-stimulate the old brain but the stories are SCREAMING to be let out. Why aren’t I more patient? Can’t write them properly yet or I’ll make myself sick again.
My illness has given me the privilege of observing and getting to understand human nature when it is not hidden by protective social clothing. However, if story-seeds are planted when I am unwell, they cannot germinate at once. If I am depressed, I forget about them until I am well again. Then these seeds start putting forth green, deliciously fresh shoots that tempt me to pluck them and examine them closely for what they might want to tell me. Magically they take up occupation in my head and, when I have made them comfortable there—no chivvying, no harassing—they tell me their stories. Oddly enough, often the first things they tell me are their names and that’s all they give me for a while. I must wait and be patient.
An aunt said to me once:‘I hope you’ve written something happy this time.’ But how can I help it if my imaginary visitors are the marginalised, the eccentric, the lonely, the ill? I write what I know. On and on they come, a phalanx
of sufferers, just wanting to have their point of view heard,wanting someone to give them a modicum of understanding, explain why and how it all came about. There’s the terminally boring Colonel Clint, gatecrasher of weddings and funerals, and mother-smothered, cardigan-wearing Eric Twells, and Samson, the Great Unusualist who went to Darwin to eat a Chevrolet, and the dainty Miss Pusey who gets a hard-on at the hairdresser’s, and one of my favorite friends, the Dapto greyhound trainer, Notley Thrower, who defies hospital regulations and gets into bed with his dying wife.
These amazing, foolish, brave and funny people give me their stories. It is my responsibility to relate them truthfully, without sentimentality. If my characters are unhappy and disturbing to read about, so be it. The efforts of my uninvited mind-visitors move me enormously in this mad, bad, sad, funny world. I try to do them justice.
DD and I plan short breaks and holidays together just as everyone else tries to do. We never say ‘maybe I’ll get sick’ or ‘it’s too risky’. Just being alive is a risk. I am fortunate enough to have travelled widely. That said, unfortunately, some holidays have been blighted by the onset of depression. I have spent days crushed into silence as we drove through New Zealand’s South Island. I lay on a bed staring at the ceiling in many a pousada in Portugal.
My memories of that trip are especially vivid, probably because I used them in some short stories but more importantly, because of an experience I had towards the end. The beautiful and the bizarre seemed closely intertwined wherever we went, and this did not bother me or seem unusual until one night when we found lodgings in Sintra. I had been feeling particularly tired but had put it down to jet-lag. The smell of creosote enveloped the place, although DD said he couldn’t smell it. I didn’t have the energy or appetite to go out for dinner but I urged him to go while I relaxed in a bath. It was very quiet as I lay soaking in the ancient bathtub staring at the high ceiling. Then that old familiar, eerie, depersonalised feeling started to descend and I thought I could hear the water-pipes whispering urgently to me. I strained to hear what they were saying. It sounded like, ‘gotta get a witness, gotta get a witness’, but the harder I strained to hear, the more unintelligible the words became.
Wherever we went, scenes of extraordinary beauty seemed to metamorphose into the atmosphere of a charnel house, but when I recollect in tranquillity, I recognise that when illness strikes, so too does what I call a ‘brain fever’, wherein my always fertile imagination goes into overdrive and my senses deceive me.
We sat, one glorious, sunny day, on a stone wall outside Coimbra looking over the fields towards an old ruin, the Quinta das Lagrimas, where it was said the beautiful Ines de Castro, mistress of the crown prince, was murdered on his father’s orders. But later, when he died, the new king had her body dug up and the assassins had to kiss the decomposing body. Tiny erigeron daisies cascaded from every rock cranny. The air was filled with the scent of broom and citronella. Flowers bloomed riotously all around us— poppies, forget-me-not, wisteria, huge, drooping blowsy roses. It was beautiful and it was frightful. I could smell the body, I could see the maggots, I could taste the rotting flesh.
At a place of pilgrimage, Bom Jesus, scores of black-clad women, bare-kneed and barefooted, were crawling up the steep, stony hill, stopping to pray beside the numerous grottos and Stations of the Cross. Their palms and legs were bloody and I felt nothing but disgust at such barbarity in the name of sanctity.
But eventually in Evora, in a most unlikely place, one of life’s small miracles happened. The first thing that caught my attention was the number of urchins darting in and out of alleyways who all seemed to have club feet. As we walked across the square a gypsy on a horse galloped by, almost knocking us over. In one church there was a grille cut in the floor and the mummified bodies of three monks lay tangled together where they had been thrown. It was ghoulishly fascinating, but nothing prepared me for the Capella dos Ossos, the Church of Bones, built with five thousand skeletons. The mummified bodies were still clad in their brown robes, and the skeletons hung from the ceiling, creaked slightly in the breeze whenever the doorway was pushed open. All the bones of the human body were neatly slotted together like a grotesque jigsaw puzzle, to build columns, arches, lintels, sills. Skulls stared out of dark wall sconces, some with eye sockets misted with cobwebs. Hanging from the bones were hundreds and hundreds of hanks of hair, some dull and brittle, others still lustrous. They were offerings, renunciations of personal vanity, offered in the hope that a favour be granted—safety in childbirth, marriages, cures. Every other space was cluttered with the visible signs of endless human suffering—crutches, false teeth, orthopaedic shoes, babies’ bonnets, glass eyes, wooden limbs.
I remember thinking how terrible and tragic it was, like something from Auschwitz. Then came that sudden moment of grace.
‘I’m glad we came here,’ I said to DD. ‘This isn’t a death house.’
‘Oh?’
‘No, it’s a place of communion with infinitely suffering people.You’d have to be despairing to make supplication in a place like this. The people who come here have nothing to offer but their pain. What I feel here is not death, but their lives, their hopes. And without hope, how can any of us go on?’
‘Time to go.’
‘Give me a minute.’ I remember standing quietly in the gloom,wanting to get it right in my head first. Then I made my offering. I offered the pain we all—the children, DD and I— shared. I wanted to join the maimed souls who had come before me and leave my invisible but very real deformity somewhere in this place so that it might emit a tiny gust of hope to another seeker of serenity who might then find the strength to continue into the sunlight of life. I had been touched by grace.
I have no regrets about how my life has turned out—how could I? I have three daughters who are more precious to me than my life, a loving and deeply beloved husband, and now a tiny grandchild whom I have fallen in love with—a little boy who can join the precious band to whom I offer my unconditional love.
Jessica: Mum has talked about some of the mad, bad, sad and funny people whose stories she has told, but the stories of we mad, bad, sad and funny children often remain untold when a parent has a mental illness. We need to learn how to care for ourselves, too. I developed coping strategies early on that have given me strength, courage and determination— qualities that have helped me achieve professional ambitions, but at the same time have impacted on my personal life in a destructive way. The bulletproof exterior that I grew over time made it very hard for me to ask for help and support. Because I was too busy checking how everyone around me was coping, I forgot how to speak up and ask for what I needed.
It took me a number of relationship breakdowns to realise that I needed to get professional help. This is not meant to sound like an agony aunt confession. But I want to write openly about how valuable and helpful it was to see a counsellor. It is very important for carers, who are trying to cope with a loved one with a mental illness, to put up their hand and ask for help. If you don’t look after yourself, then you are no good to anybody else.
There is no shame in getting professional help to work through issues that you may be experiencing, especially in light of the pressure you’re already under because you’re trying to look after everyone around you. It was a godsend for me to find a counsellor who helped me unravel many of the unresolved issues I had developed because of Mum’s mental illness. Those monthly sessions forced me to deal with a number of issues that manifested themselves in my childhood, linked to Mum’s illness. Everyone deals with crisis in a different way. My sisters have very different stories and coping mechanisms. But mine, as I said, was to become the strong and capable daughter, sister and friend—terrific for dealing with a crisis, but not so good when all you really want is for someone to step in and look after you.
I found that I was hopeless at asking for help. Because I saw my role as ‘the coper’, I found it very difficult to tell people closest to me that I wasn’t happy. Somehow, de
ep inside, I felt like a failure if I confessed that I wasn’t happy. This was a pattern that carried over into friendships and relationships. I forgot about what would make me happy. In turn, I ended up feeling resentful and hurt.
Also, I ended up thinking that the only way someone would love me was if I looked after them. My role as a carer was haunting me through my adult life. Somehow my Penelope & Jessica Rowe validation as a person was tied up with looking after people. I had to learn that I was worthy of love just because of me.
I found it terribly painful dredging up the feelings I had when I was younger. I found I had been very good at filing them away and not confronting the issues. I learnt that I had to face them if I wanted to have happy, real and fulfilling relationships. I wasn’t going to get this advice from anyone close to me. I needed to step outside and get professional help. And it was worth it. I am far from perfect in relationships, but I am getting better at putting boundaries around myself. And, ever so slowly, I am also realising that it is okay not to be okay. I am not responsible for the happiness of everyone around me. That is their responsibility.
I also found through counselling that I had a lot of unresolved anger towards Mum. There was a part of me that was resentful. Why did she have to be needy? Why was she a victim? Why couldn’t she cope? Why did I feel like I had to come to her rescue? Why couldn’t she be just like a normal mother? I felt incredibly guilty recognising these feelings. I had pushed them away for such a long time.
The Best of Times, the Worst of Times Page 14
