The Best of Times, the Worst of Times Page 11

  Jessica: True, my sisters and I made silly jokes to help ourselves cope but the sad reality was that, as a teenager, I realised Mum’s illness would be a permanent part of our lives and that was no joke. Her bipolar disorder seemed to come in cycles. Often, at the start of the year, after summer holidays, her decline would begin.

  Mum never explained what tablets she was taking, but her shaking hands, her dry mouth and sticky lips revealed she was on increased medication. Anxiously I would look at her face, willing myself to see some signs of improvement. But no, all I could see was the dead look in her eyes. She was slowly withdrawing from us. I would try to will her better. I found myself being upbeat and positive with my sisters. I’d hear myself telling them: ‘Mum looks a little brighter today. I think the tablets are working.’

  Harriet would agree: ‘I think you’re right, she does seem better.’

  I’d also reassure Claudia: ‘Mum is going to get better soon.’ This was how I tried to protect them, to take care of them. My blind optimism in the face of Mum’s obvious deterioration became the way I would cope with her illness. The brave face of the dutiful daughter was enough to get me through the day, but at night, alone in bed, I would weep— soundlessly, muffling my sobs with my pillow. Sadness and despair overwhelmed me. Eventually I would fall asleep, dreaming my hopeful, precious dreams. Maybe, just maybe when I woke up, Mum might be a little better.

  She was never better when I woke up. Thankfully, I was never given the responsibility of telling Mum she had to go to hospital. We were lucky to have a safety net around us. DD and her doctor convinced her when hospitalisation was the only option left. They were fearful she would commit suicide. At this stage, I was unaware of the dangers of a deep depression. Luckily, DD knew the dangers and was able to intervene before it was too late. I’ll never forget when he picked me up from the hospital, soon after Mum had been admitted again, and explained to me that she could die.

  ‘Die, what do you mean die? She hasn’t got cancer, how could she die from bipolar?’

  ‘No, no,’ he said, ‘What I mean is that your mother is at a serious risk of harming herself if she is left alone.’

  ‘What are you talking about?’

  ‘Well, your mother could take her life.’

  The simplicity of the statement knocked the breath out of me. I felt a huge lump growing in my throat. Oh, I didn’t want DD to see me cry! I was rapidly trying to take in what he had said, as I was furiously blinking away my tears. My God, Mum could kill herself. Why did she want to do that, when she had us? I wasn’t angry at Mum, but I felt so empty, afraid and overcome by an awful sadness—a gradual awareness of the seriousness of Mum’s illness. I didn’t want her to die. I so wanted to be enough for her. I would be enough, I decided. I would make her proud of me.

  DD would take Mum to hospital, and my sisters and I would pack up and move in with Dad, my step-mother and our step-brother, Angus. I resented having to leave our flat, pack up our clothes and share a bedroom with my sisters. I was sixteen years old, embarrassed by my terrible acne, preoccupied with talk of boys and bra sizes. I did not want to be dealing with a mother who was sick. I found myself spending more and more time with my boyfriend’s family. They lived in this beautiful, big house on the harbour. My boyfriend’s mother was generous with her affection, cooked delicious food and let me borrow her fashionable clothes. I loved spending time with this warm, happy family. Most mornings, I’d sit in their kitchen eating melted cheese and bacon fingers, and feel safely cocooned from the madness that was engulfing our lives. It was an escape from the sense of despair and hopelessness that clung to me when Mum didn’t respond to any of the medication and her stays in hospital stretched out into months. This bubble of comfort helped me survive the frightening times when Mum was terribly sick. These weekends of respite gave me the energy to get through the week, and be able to put on the ‘brave’ face for the hospital visits.

  My sisters and I felt we’d lose Mum for a time when she disappeared into hospital. It was hard going to visit her when she was in such a broken state. But still, we’d head out most afternoons after school to visit her. The bus trip seemed to take forever. As the journey went on and on, we felt like we were moving further away from our comfortable life. Even the landscape changed, as we went from streets full of shops and people to this barren wasteland. Once we eventually got there, the look of the hospital didn’t help my feelings of trepidation and fear. The hospital had been built in this wild, windswept position on the edge of a cliff. Some of the wards were demountables, and the psychiatric ward was at the very edge of the complex in the most isolated part of the hospital. Right next door to Mum’s ward was the locked section of the psych ward. I used to get the shivers when I walked past that section. My sisters and I wondered what sort of people were behind that door. It felt like we were at the end of the earth.

  As I walked along the hospital corridor with my two younger sisters, my heart would sink as I approached Mum’s door. I would be hoping, wondering, praying: what sort of state would I find Mum in today? Would she remember our last visit? Would she try to be brave? Would she look sunken and sad? Or would she just sob when we tried to talk to her?

  I’d open the door and Mum would be pressed into the corner of her bed. The look in her eyes said everything. There was nothing there. No spark, no light, just a vacant look. Sometimes we would stay in her room. I’d try to remember funny stories—anything—to fill in the silences. I thought it was my job to keep the show on the road. I felt responsible for trying to glue everyone together to bring some sense of normality into the sad, strange situation. On her birthday we brought cake and balloons. We put the candles on the cake in the nurses’ station. One of them told my sister, Claudia that Mum was lucky to have us. I thought Mum was lucky as well. But I wasn’t going to tell her. I didn’t want her to worry about us. I just wanted her to put all her energy into getting better. So we put on our brave faces, walked into Mum’s room with party hats on, and sang ‘Happy Birthday’ in loud, forced voices, hoping this might be enough somehow.

  Mum used to suffer from hallucinations in hospital. She would imagine sounds and voices. Sometimes she wasn’t sure if she had dreamt up visitors, or if someone was really sitting on the chair next to her bed. She would spend hours gazing blankly out her window that looked directly on to the rooftop of the hospital dining room. She thought she could see black cats all over the corrugated roof. But she wasn’t imagining that. The hospital was overrun with feral cats. I liked the idea of lucky black cats keeping an eye on Mum. At other times, we’d find her sitting under a tree in the hospital garden. That seemed to be a good sign. She was trying to become a part of the world again. You’d feel full of hope when you left. I kept up my cheerleading role, telling my sisters: ‘Isn’t Mum looking better. It won’t be long now.’ Unfortunately, though, it was never as simple as that. Mum’s recovery was often marked by many false starts. She would move forward, and then on the next visit she would be so much worse.

  During these endless hospital stays, Mum would have bouts of ECT. When she first told me she was having ‘electro-convulsive therapy’, I was beside myself. I felt terrified. Was Mum so sick that she needed to have electric shocks jolting her brain? It sounded so primitive and barbaric. Mum explained that it wasn’t like the movies, not like One Flew Over the Cuckoo’s Nest. She would be given an anaesthetic, and she would not feel a thing. The doctors believed that ECT was the only option left for her.

  The ECT knocked around Mum’s memory. She couldn’t remember our visits. I would walk into her room and she would stare blankly at me. There were scraps of paper beside her bed, taped to the wall with the names of visitors, the days of the week and dates. I would steel myself, push away my sadness and put on my strong, eldest daughter face.

  ‘Hi Mum, it’s me. I had a good day at school. We’re learning about . . .’ I felt I’d already lost her as I began telling her about my day, but I was determined to keep my side of the conversatio
n going. Inside, I was screaming ‘Come on, what about me? Please, please show me some flicker of interest in your eyes. No, I don’t want to reassure you. How about reassuring me? You’re meant to be the mother! It’s not fair . . . it’s not fair . . .’ Then Mum would start sobbing as she struggled to remember what day it was, and how long she had been in hospital. I felt sick with guilt as I hugged Mum and reassured her that it was all going to work out in the end. I joked that it was a good thing she couldn’t remember much about these horrible, hateful months in hospital.

  Because Mum was in hospital for such long periods of time, we got the chance to get to know the other patients. There was a ward full of girls with eating disorders. And on Mum’s better days, she would tell us how they were trying to fool the nursing staff.

  The woman in the room next door to Mum used to howl like a dog. Although the sound was frightening, I couldn’t help but listen as Mum lay silently on her bed. I’d hear her husband tell her how much he loved her, how beautiful she was. But she would just bark and tell him she was an animal. She would wail and shout that no one could ever love her because she was an ugly, vicious dog.

  Other patients would just shuffle around. They had the same vacant, withdrawn look in their eyes as Mum. You’d see their families visit and look for the same signs we’d look for. Is there any improvement today? Some patients didn’t have any visitors. I wondered why nobody cared for them.

  It wasn’t always sad. We’d laugh and make jokes— otherwise you would just want to give up and start crying. One time, while we were sitting with Mum in the canteen willing her to eat some dinner, Harriet kept burping and farting. We thought it was hysterical. Mum didn’t. But then another patient came up and said: ‘Don’t worry, I had a terrible flatulence problem until a bus came along and knocked all of the wind out of me.’

  We all fell about laughing. There was another patient who said he caused earthquakes. He reassured us that the Newcastle quake wasn’t his, because it was too small. A woman used to just stop and turn into a statue, with her coffee cup still in her hand. She wouldn’t budge. It was especially annoying for the other patients if this happened while everyone was lining up for dinner. This poor lady would not move until a nurse came along, picked her up and shifted her. Another patient would ring random numbers in the phone book because he wanted to talk to someone, anyone. He would memorise these conversations with strangers and then recount the story to whoever would listen.

  Apart from one brief discussion with a social worker at the hospital, no professionals asked us how we were coping. Mum, my sisters and I were ushered into a room and introduced to the social worker. I felt awkward as we sat on plastic chairs and the social worker asked me to talk about how I felt with Mum in hospital. I mumbled that I was fine. There was no way I was going to tell this stranger how I felt. I wasn’t even telling Mum. Why would I open up in front of her and my sisters when I felt I had to keep it together for everyone? My sisters also said they had no problems. It ended up being a quick ‘counselling’ session, and that was the only time we spoke with a social worker. It amazes me there was no ongoing formal support network offered to families. Luckily, we had a wonderful network of family and friends who we could turn to for help. I realise this isn’t always an option for a lot of other families.

  When I was younger, I wasn’t scared about my chances of also developing bipolar—probably because I didn’t allow myself to go through that thought process, in case it jeopardised the capable, eldest daughter role that I had earmarked for myself. It was only after I discovered research pointing to a genetic component in mental illness, with children of parents with a mental illness at a much higher risk of developing a mental illness themselves, that I found myself thinking more about it.

  Yes, a part of me is frightened because I’ve seen how hard it has been for Mum. I don’t want that to happen to me. But to cope with my fears I remind myself there’s no point in stressing about it, because worrying isn’t going to make a scrap of difference. But I’m also aware of the risks, so I’m vigilant about any signs of depression. Researchers have also found that drugs and alcohol can be a lethal mix if your family has a history of mental illness. Therefore it’s very important to be aware of these triggers, be armed with information and not to be afraid to get help if you need it.

  Recent studies reveal that if families of parents with a mental illness are supported, children are more likely to develop coping strategies and become more resilient, which in turn decreases their chances of developing a mental illness. I can apply this to our family because, thanks to the ongoing love and care of extended family and friends, we survived. Unfortunately other children aren’t so lucky. I believe it’s vital to have more formal support networks in place to help every family touched by mental illness to not only survive, but to thrive and lead positive and enriching lives.

  Chapter 8

  Human kind

  Cannot bear very much reality.

  —T.S. Eliot

  Penelope: If I had a broken leg that was in plaster, family and friends would not urge me to make a decision that the leg was mended and to remove the cast myself. If I had a colostomy bag, I would not be told to take it off before I had a bowel resection. If I had diabetes, I would not be urged to throw away the insulin and needles and meditate instead. However, depressed people don’t look as if they have anything wrong with them that a good ‘talking-to’ about counting their blessings won’t fix. If you are a friend, don’t do it! You might be tempted to, but for God’s sake don’t do it! The sufferer knows all that and it only adds to the sense of guilt and hopelessness to have it pointed out. This is where mental illness is such a puzzle to so many people. There are no physical wounds to observe that would normally bring out our protective and supportive side, and it is almost impossible to describe what it is like to someone who has not experienced it.

  Well-meaning and not so well-meaning people have given me advice over the years, and one comes to dread the onslaught because there seems no way to convince them that you have a true illness. Many people disapprove of medication. They say drugs are ‘bad’ for you. ‘You’ll become addicted’. ‘Drugs are only treating symptoms’. These people are not experts. What right have they to advise on your drug regime? They are, I’m sorry to say, ignoramuses. So ignore them. They don’t know that depression is a very serious, potentially lethal illness. One facile man, without any knowledge of mental illness, blithely told me to put myself into his hands and he would ‘get you off the tablets’. No thanks: medication has saved my life. The medication you take is a matter for your doctor and yourself, backed up by as much dispassionate information as you can glean.

  Other people cannot accept that bipolar disorder can just strike out of the blue and ask the same old question: Why did it happen this time? It happens. As I explained at the start of the book, sometimes it happens when people are under enormous stress or suffering great loss. Sometimes brain chemistry goes awry. Some people may only ever have one episode of depression in their lives. Others, like myself, may have it for a lifetime. There have been many times in my life when the stresses have been great but, on the whole, stress does not bring on a depressive episode. My episodes tend to come out of the blue, although over the years a pattern has emerged. The most dangerous times of the year are the end of summer and spring. This is when most of my admissions to hospital have taken place. My doctor will often decide to increase my medication around these times in an effort to head off an attack before it comes on. My birthday is in April, and I have so many birthday cards saying, ‘Get well soon’.

  Among other theories about my illness are the following: It is because she writes all those depressing stories and novels . . . She doesn’t eat enough fish to feed her brain properly . . . And one I particularly fancy: that I chew too much gum. Many people have encouraged me to take the herb St John’s wort instead of anti-depressants. St John’s wort appears to have some small benefits for those who are only mildly depressed, b
ut it has no effect on dangerous depression. I remember asking my doctor about it one day and in reply he handed me a packet of potato chips he had bought in the United States. They were St John’s wort potato chips. I felt that spoke for itself! I have been told that my depression is caused by a food allergy and that there is a homeopath in Chinatown who can cure me. I have been advised to see an iridologist, and to have reiki therapy and chakra realignment among other things. I’m not knocking these therapies if people want to use them and are not being ripped off by the myriad charlatans that are out there, but none of these treatments has been put to clinical blind trials with large numbers of participants and placebos to test them properly. As far as I am concerned, they do not have any scientific validity as cures for clinical depression. I have chosen to put my faith in science. Many people will not agree with me—so be it. Meditation and relaxation are used as adjuncts to treatment for depression and certainly have their place in programmes to reduce the anxiety that accompanies the illness, but only after there has been some improvement.

  One letter-writer took it upon herself to try to direct me along lines she seemed to prefer.Apparently I was suffering an existential angst that could only be cured by robust spirituality and a twelve-step programme for sufferers of mental illness. She hoped I would find a ‘spiritual solution to this disorder of the psyche’. She intimated that I would not get well until I ‘let go of the sick distortions, ancient resentments and constant internal chatter with phantoms’. Her attitude to my medication was that drugs would not provide ‘answers to soul sickness’. At one stage she suggested some adolescent misbehaviour going on in my household was ‘the bitterly inevitable product of a mad mother’. I did not have a disease, but dis-ease. I came to dread seeing the handwriting on the envelopes that poured in, both at home and to the hospital. I felt I was being hounded. There may have been much that was perceptive and useful in her letters, but they were written with dogmatism and zealotry, and were evangelical in their righteousness. They seemed to demand I stop seeing my illness for what it was—a confusion of brain cells—and see it the ‘right’way that she espoused. When this letter-writer, without my knowledge, wrote to berate my psychiatrist for what she considered his ‘cruelty’ to me, I was astounded and incensed. I felt the intrusion was so great and the boundaries so grossly abused that I had to say goodbye to her. People with mental illness do not need to be bashed over the head with other people’s philosophical or religious stances. And what she had said was grossly unfair. My psychiatrist had never been cruel in any way. He was exactly the opposite, distressed and concerned when it sometimes seemed that no drugs or ECTs would ever alleviate or shorten my depressions.