He constantly tried to reassure me that it was just a matter of time before there was a breakthrough and he made himself THE BEST OF TIMES, THE WORST OF TIMES available more often than duty required. He repeatedly canvassed opinions with the other specialists in the Mood Disorders Unit and the Black Dog Institute. I will always be very grateful for his care.
There is another area of sensitivities I’d like to allude to briefly. I dislike the term ‘bipolar disorder’ immensely. I’d much prefer to use the term ‘manic-depressive illness’. The more modern, politically correct term ‘bipolar disorder’ is simply not descriptive enough. Both the poles are cold places and that might do to describe a depressive phase, but what about the heat, the effusiveness, the tropical lushness and colour of the manic phase? I also feel that the word ‘depression’ is bandied around so casually that the condition has somehow been debased. The term I like best of all to describe a depression is ‘melancholia’, but it is rarely used in common parlance—even though poets like Shakespeare and Milton and Keats used it in their work to describe a state of total dejection and sadness of spirit. Here is how Shakespeare described the melancholic Antonio at the beginning of The Merchant of Venice:
In sooth, I know not why I am so sad.
It wearies me; you say it wearies you;
But how I caught it, found it, or came by it,
What stuff ’tis made of, whereof it is born,
I am to learn;
And such a want-wit sadness makes of me
That I have much ado to know myself.
What an insightful, moving, almost perfect description of endogenous depression.
There are other words in the psychiatric lexicon that I dislike. I hate bland, inoffensive euphemisms for mental Penelope & Jessica Rowe hospitals, like ‘clinics’. It may seem that I want to turn the clock back to a darker period of mental hospitalisation, but I’d like to see all mental hospitals—private and public—dignified with the appellation ‘asylums’. It will never happen, of course. Politicians and the public would be outraged, because it would conjure up for them an image of the era of straitjackets, deep-sleep therapy, shackles and barbaric abuse. But when you’re very ill—perhaps so ill that you are a danger to yourself or others—you need and seek comfort and protection. In another context, what could have a more comforting and protective connotation than ‘asylum’? Refugees from physical and political persecution seek it. That is why what we offer them is called asylum. Why cannot refugees from mental persecution be offered the same reassuring haven?
I’ve tried to explain some of the things mentally ill people don’t need. What, then, do they need? Far and away, above anything else, they need their family and friends to accept that they are in devastating emotional pain—in such pain that at times they long for death. I know that this is terribly hard for someone who has not been in that dark place to understand, but if they take the time and make the effort to inform themselves, they will start to grow in understanding.
I am well aware that my children absorb and are deeply affected by the bleak atmosphere surrounding me when I am unwell. As Jessica says, it has become slightly easier as time has passed and they have become adults, because they now understand so much about my illness, but it still remains a dismal prospect when they realise I am becoming unwell. It must be so hard for them not to be affected by it and to feel like giving up hope that things will eventually come right. I am so grateful that my daughters have each other, DD and my friends to help them keep up their courage. They have never ceased to encourage me—‘You will get better, you will get better’—when I have felt there is no hope left.
This encouragement is particularly important, even though I couldn’t believe it in the early episodes. Now, although it doesn’t help much at the time, I do have an inkling that the pain will eventually cease. After the first episodes, I was so afraid of recurrences. How could I go through all that again? Now I am more accepting. If it happens, it happens, but meanwhile I have my full and healthy life to get on with, so always quietly and constantly reassure a sufferer that the episode will eventually pass.
As a family, we have learnt to build in mechanisms that help everyone to have space and time out when I am ill. It is not so difficult for my daughters now that they are grown up and living away from home, but my husband needs time out as well because, if I am not hospitalised, the main burden of caring for me falls upon him. I have encouraged him to take a weekend away while someone comes and ‘mother-sits’ me. I have asked friends to take him out to dinner. It has given him some respite and eased my feeling of guilt. Of course, these mechanisms have to be discussed when I am not ill— calmly, in the light of sanity and tranquillity. Gradually we have come to know from experience what has worked best before.
When ill but not hospitalised, I have sometimes found it necessary to hang the front-door key on a nail just inside the open front door and leave the security door locked. This way my friends can call by and let themselves in at the times when I am so incapacitated that I feel I cannot get to the door. And what is the best thing for these friends to do? Just coming to visit is an affirmation that they see me as a worthwhile person who they are not going to abandon. Maybe they’ll make a fresh pot of tea or cut a sandwich in the hope that I will nibble a bit. They acknowledge that I am not going to be chatty, and sometimes they will just sit and hold my hand. They are quiet. They will not stay long. On the occasions that some well-meaning souls have not realised how stressful a long, normal, chatty visit can be and stayed on and on, I have been truly exhausted. It’s this matter of the brain trying to concentrate and absorb what’s been said or done when it is not working at full or even a quarter capacity. DD has often tried to caution me about the propensity I have to put on a good face, to push myself to be what I think I ‘should’ be, to try to underplay the distress I am feeling.
It’s important to be encouraged to get out of bed, shower and dress in fresh clothes, even if you promptly return to lie on the bed all day. It’s better if you can move to another room other than the bedroom, even if only for the change of scene. Natural light and flowers are, for me, essential. I must have photos of my family around me, particularly in hospital. They help to ease the loneliness.
I have always impressed upon my children that mental illness does not demonstrate weakness, lack of character or some Lombrosian defects. However, depending on our own experiences,we may find it hard to convince ourselves of that. As I said earlier, I was brought up in a birth family that did not accept emotional outbursts or spontaneous shows of affection. It was definitely weakness to be emotionally sensitive. That showed lack of backbone. Woe betide any sign of resentment or pushing against the rigid, structured routine of the household. Rudeness or ‘unpleasantness’ were the signs of a selfish troublemaker. I was brought up to believe that ‘life’s hard, accept that, sooner rather than later and get on with it’. I often heard my mother admonishing us, when she was tired and her patience at breaking point, that ‘my nerves are terrible today’. I wonder, looking back, if ‘nerves’ was the acceptable euphemism in the 1950s for a state of depression.
So unfortunately, when I broke down so spectacularly the first time, my birth family were taken unawares and totally unable to handle it. This was, I suppose, not altogether their fault because mental illness was not a realm they were familiar with, but as a medical family I think there could have been more understanding. This perhaps demonstrates an attitude that is still prevalent in some members of the medical profession: a suspicion of psychiatry and psychiatrists. If there is stigma among the medical profession, how are we to eliminate it from amongst the general public?
My birth family variously described me as an ‘attention-seeker’, needing always to be ‘the centre of attention’ and, saddest of all, ‘wicked’. I remember one frightful afternoon when I had been staying with a supportive relative for a few days (although I should have been in hospital—it was before my first admission). This relative, unbeknown to me,
rang a family member to tell them where I was. This person arrived and immediately demanded that I behave myself, saying I was a ‘great little actress’. Even now I am appalled at what happened. I did something entirely inappropriate. I started to laugh and couldn’t stop. This behaviour just helped to entrench the truth of what had been said to me. I have since asked a psychiatrist about this and have been told that it is not at all uncommon when someone tries to defend himself or herself against something shocking. It was a sign of my very deep depression. People have been known to laugh when they are told of the death of a loved one.
On another occasion (again before my first hospitalisation), my behaviour at a house in the country in mid-winter so incensed a sibling that I was put out the door and it was locked behind me. I had been persuaded to go on this overnight stay against my will by another sibling who felt it would ‘do me good’. I was feeling so much confusion, loss and anger against my birth family because of what I perceived as their lack of help that I should have trusted my instincts. But, with depression, judgment goes out the window. That night I cried endlessly, railed against them, rehashed old grievances, begged them to become positive supporters rather than playing their usual roles—which were as bystanders in the family drama of me versus the rest of them. Finally I was told to go to bed. Some of them were sleeping on the floor around the fireplace. I had a bed in a room that led into the main bedroom. All the lights were out and the house was silent except for my harsh sobbing, which I tried to stifle under the bedclothes after being told to be quiet. SuddenlyI remembered that I had not taken my contraceptive pill. I pulled my handbag over and started to look for the packet.
‘What are you doing?’ demanded the person in the next room.
‘I’m looking for my contraceptives,’ I replied. Even as I write this, I can’t believe the reply.
‘Why do you think someone like you would need those again?’
How can you respond to something as vicious as that? I had to get away from the pure venom of such a response. I was sleeping in my clothes. I hadn’t even taken off my shoes. I got out of bed and felt my way towards the front door where I had noticed a daybed when I had arrived. I would lie there for the night. Suddenly my tormentor was behind me.
‘What are you doing?’
‘I’m looking for the door.’
‘I’ll show you the door.’ He opened the front door, to the freezing winter dark, pushed me through and closed it behind me. What sort of mentality can consider this is a reasonable response to a mentally disturbed person? To this day I cannot understand what person would act in this way unless the concept of mental illness is so alien—indeed, so threatening— because it deprives them of the comfortable theory that they can always control what happens to them in life.
I was inadequately clothed for such a walk through the blackness of a winter night. I was in shock. How could this be happening to me—a woman who had five brothers, three of whom I had just left a few kilometres down the road? I was university-educated, middle-class,my family were considered pillars of the Catholic Church in their Sydney parish. I had all my own teeth. I had not been bashed to buggery by a drunken husband. We did not fit a profile that might make a good evening current affairs profile of a dysfunctional family. As far as I am concerned now, family is analogous with dysfunction.
I was sure that at any moment I would be rescued by a member of my family. Once or twice I heard large cars coming up and I stumbled into the undergrowth, wetting my clothes thoroughly. One had huge searchlights that swept back and forth across the road. I was terrified I would be seen. I suppose they were kangaroo shooters. As I had very little money, I went to the police station to find help as soon as I reached the town. I was by then beginning to shiver uncontrollably.
‘This is not the big city, lady,’ said the policeman.‘There’s nowhere round here you can stay unless you want to be locked in the cells for the night and we can’t do that ’cause me and me mate are off on patrol now. Go over to the railway station and wait for the 5.00 a.m. train to Sydney.’
I found the station and knocked on the stationmaster’s door. He opened it and inside was a blazing log fire. But he wouldn’t let me warm myself. I had to lie on the railway bench out on the freezing platform and wait. I actually thought I would die that night. I hallucinated that the family had come to find me. I thought I heard their voices and footsteps. No one came and I boarded the early morning train and curled up in the unheated carriage. When we arrived at Central Station I was too sick to move. I stayed where I was, curled foetally in a corner where I was finally found by a guard who helped me off, took me to the canteen and bought me a cup of tea. He then took me to the taxi ramp, hailed a taxi and handed me a few dollars. I had not even bought a ticket and I will never forget his kindness. There is just one final, lighter note to this story. The taxi driver was heavily made up for this hour of the morning and had a very deep voice, a shadowy chin and large hands. She was, however, extremely gentle with me, also.
‘We fems have to stick together,’ she said.Ah, the kindness of strangers.
No member of my family has ever referred to that episode and I only recount it to demonstrate what ignorance and a judgmental approach to mental illness can lead to.
Another example: I was informed, once more by a sibling, that helping to do some proofreading would be ‘good’ for me and ‘get me out of myself’. This was when I was recovering from a serious episode and had recently come out of hospital. I protested that I would not be able to help, but was nonetheless collected and driven to a house where I was told to read the text while it was proofed. My eyes were blurred, my hands shook and I was teary. I managed the words, by and large, but when I had to say ‘Open inverted comma, question mark, close inverted commas’, ‘Caps, colon, italics stop’ and so on, I simply couldn’t do it. Translating the signs into words was impossible. I was sternly rebuked for this waywardness but finally I gave up altogether. My punishment? I had to find my own way home.
Jessica: Luckily, I didn’t share Mum’s sense of abandonment. My sisters and I drew on the support of Dad’s extended family, combined with Mum’s close friends. I don’t believe we would have survived without the love, care and help we received from this group of people. The estrangement between Mum and her birth family had, in many ways, been replicated towards us, so I never looked to them nor expected help from them. When we were younger, my sisters and I would stay with Dad, my step-mother Lesley and step-brother Angus during Mum’s long hospital stays. Their love and support helped us through some very rocky patches. Having some stability in our lives made a tremendous difference. There was never any sense that we were an unwelcome intrusion in their lives. Our day-to-day routine didn’t change much: we’d head off to school and then visit Mum in hospital each afternoon.
I remember getting enraged with Dad when he suggested Mum might never get better. We were sitting together at the kitchen table.
‘So, Dad, when do you think we can go back home?’
‘Well, darling, your mother might never get better.’ That made me jump to my feet, lashing out at him, spitting my words out in anger at him.
‘How dare you say Mum will be in hospital forever. She has to get better. She has to get out. I want to go home.’
I couldn’t give up on Mum, I had been willing her to get better, and Dad was not going to take that fantasy away from me. It can be very easy to lose heart when you see someone you love not getting better. I wasn’t going to entertain the idea that Mum would remain in her depressed state forever. So I found myself incredibly sensitive to any criticism of her. Look out anyone who dared utter a damaging word about Mum! Perhaps all Dad was trying to say was that Mum would be dealing with her illness for the rest of her life. I just wanted her out of hospital so we could go home.
Mum’s partner DD became a part of our lives a few years after Mum’s first breakdown. Unlike so many men, who understandably would have been terrified at the thought of getting involved wi
th an ‘unstable’ woman, he stuck around. We were incredibly lucky to have him. He wasn’t living with us during those early years. He would catch up on the weekends with Mum. That was their special time. He didn’t want to intrude on our relationship with Mum. He would often stand back and let us do things our way. But it was reassuring to know he was there—always there, ready to catch us. DD has been unswerving in his love and support for Mum in often very difficult times. He has been an incredible support and strength for all of us. I don’t think Mum would have survived without his unconditional love.
We had two magnificent great-aunts who would appear like fairy godmothers. One of them, Lois, could be quite fearsome, but she made my sisters and I feel special. She would take us shopping for clothes. She made sure we got our hair cut. These were treats that Mum couldn’t afford. Lois’s sister, Nola, was softer and she would spoil us in her special way. She would often come around and rescue us. I used to have long, thick hair, which I didn’t look after properly. I’d been sent home from school with nits and couldn’t go back until they were gone. Mum wasn’t coping very well. So around came Nola, and she painstakingly combed my hair free of nits, as well as cutting out a few big chunks of hair. She would also have little dinner parties for us in her magical waterfront unit. We couldn’t believe our luck. Chips in silver bowls. Special toffee log ice cream for dessert. We’d sip lemonade out of antique crystal glasses, but we’d be very careful not to break them because they’d belonged to Nola’s mother.
The Best of Times, the Worst of Times Page 12
