It was my desire to reduce the fear and sense of isolation associated with diagnosis, increase awareness and reduce stigma sur
Russell Miles - My Black Dog Tale
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- Ela Simon’s Carer Story
Russell Miles - My Black Dog Tale “My car. Where is it?” I said to myself. Then I remembered I had parked it in the next street when I arrived for work that morning. “What else I may have forgotten during the day?” The problem with forgetting is you have no idea what you may have forgotten. I started to create an itemised list of what I had been doing over the day. “Yelp!” My black dog barks as I walk past my car. “Keys?” I fumble though pockets, work bag, back though pockets and then back to work bag. They are in the outside zipped pocket. “Obviously.” I open the door and my dog slips into the passenger seat. I am occupied with placing my bag, starting car, looking over shoulder, pulling out. Dog sits up, stretches and sits down again as I ease into the flow of traffic and familiar streets. Tiny thoughts emerge in my head; issues at work, unpaid bill, children spending too much time on computer, difficulty with partner, failed investment, petrol prices, etc. It doesn’t seem to matter what I think. I certainly can’t do anything about them while driving the car. Black dog starts growling; regurgitating thoughts takes further hold. Stop light! Indicator of car in front of me is flashing. Dog rest jowl on paws, settles. I’m fully occupied with driving. I wonder why it is that my head space starts churning as soon as I get to the car. My work day is usually hectic. I take telephone reports about child abuse. The phone rings, I talk, write notes, consult supervisor, follow up contacts. I use to do field work. I liked getting out of the office. But I found it harder to balance responsibilities as sole parent of two school age children. “4 calls in queue. Anyone go on line?” the manger calls out. I put aside notes to be typed up later and take another call. Hang up, phone rings straight away. More discussion, writing and looking up addresses of support services. My colleagues regularly bemoan the pace that we worked at, silly procedures and copious forms to be completed. I never let on that I like it that work fully occupies my head space. I’ve little time to feel down. My black dog sits at my feet during the day; tired but settled. Traffic lights turn red. I stop. “If I pay part of son’s orthotic bill this month I won’t be short for rent.” Dog growls. Incessant thoughts have remerged. I pull on the collar to get dog back on seat / tug rubber band around my wrist. This is supposed to snap back my stuck thought patterns. Traffic starts moving. I’m again thinking about work. I can’t keep up the pace consistently. I have my limits. My black dog tugs at me when I get tired. I often skive off for a quiet coffee or to sit alone. Between calls I stroll over to chat with work mates, gossip, tell jokes, and grip about the procedural changes. There are various ways to hide my dog amongst the daily turmoil. “We need these family violence reports registered today,” a supervisor interrupts as they pass me some ruffled pieces of paper. “I’ll add them to my pile,” I obliquely answered. I don’t want argue about my workload. I’ve found that depression has a habit of turning assertiveness into defensiveness. I need to pick my battles. Traffic lights change. I cross the intersection, pick up speed. Sometimes I get stuck in traffic for ages. I occasionally cycle to work. Bike takes a little longer. But exercise helps manage depression. At least the brain has less oxygen with which to fuel mindless thoughts. My dog pants along behind. I’m approaching a rail crossing, traffic building up, cars creeping forward. Black dog is getting excited, sits up, pokes head out window. My father committed suicide at a rail crossing. My grandfather was manic; aunt domineering and younger sister often has inexplicable illnesses. “I’ve been born into the ‘House of Usher!’” I pull on collar again. Traffic starts moving. I watch other car merging. Wave to driver as they pull in. They nod back. As I pull onto the freeway, I look across at my dog whose dark eyes looking up at me. “You’re bad at communication,” I hear myself say. I shift into 5th gear, cruising along. “Couldn’t talk with late wife, children, indifferent siblings, shop-assistants.” My head insets various characters in my life. With the flow of traffic, my head has scope to create imagined conversations. The same form of words repeating over and over again. “This is silly!” I grimace at dog. Snap at rubber band. “What five things would I most like to do?” A mental game I play to divert my thinking. I get to three; curling up with my partner in bed. The cars in front slow up. I ease up on accelerator. I had phoned a mother with two infant children; son and daughter. A relative had alleged she was neglecting her children. I asked her about her children and family circumstances. Standard questions include any significant events; bereavement, moving home, ill-health, hospitalisation and so forth. “I have Bipolar Disorder,” answers the mother. “Child Protection is not particularly concerned about someone’s mental health than if they have a broken leg,” I advise. “It is only if someone doesn’t seek their leg splinted. Same with mental health problems.” We talk at length. She is very open. Not annoyed that I have called. Tells me her doctor’s name. I hang up. I need to be mindful not to project my personal feelings onto assessments. I’m tired. I had come into work late after another sleepless night. I look at my notes; the words blurred and don’t made sense. I pick up another file, skimmed the pages but take in nothing. I feel frustrated. Sometimes I make excuse to leave early (eg, child’s doctor appointment). Turn off for home is coming up. Dog is asleep on seat. “I need to catch up with manager tomorrow,” I remind myself. My application to work part-time has not been confirmed. I started working part time some years ago so I could have time to attend to children; dental appointment, parent teacher interviews, picking up prescription, cleaning home. I also use it to pace myself. I can prepare meals without haste, exercise at gym, read, muddle about house. “Sometimes I’m too slack to bother being depressed!” Side street, close to home. What have I planned for dinner? Do I need to shop? There is left-over tortellini. Need to organise more balanced meals. Had we finished milk at breakfast? Son had wanted to make butter chicken. Is other son at cricket training? I find planning such things difficult. Rather, I’m inconsistent with planning. I can arrange complex child protection investigations. I once prepared a five course meal for sixteen. But thinking about meals for than a day or two, remembering which flowers my partner likes or if I’ve paid gas bill. This eludes me. I pull in the drive way, stop. Dog sits up. Children come out front door; to help with any shopping. I open door. Dog leaps out and slips through front door and canters off to my bed. He’ll be there when I seek sleep later in the evening. I drop work bag, check mail, pick up things. “What was the best thing today,” I ask my sons. As much an affirmation to myself as to them. Ela Simon’s Carer Story My name is Ela Simon. I have been a carer for my beautiful daughter, Natasha, who suffers from Bipolar disorder, for 25 years. However, my story is also one of being an ‘unofficial’ carer for my migrant parents. So I am the Kosher Ham in the sandwich. I am 55 but living with and caring for manic people, who pack a year into a week, makes you old and fuzzy. So, although I don’t look a day over 35, I’m actually 115. I was born in Krakow, Poland in 1953 & named Elzbieta, to traumatised Jewish Holocaust survivors. To avoid anti- Semitism, in 1957 my family moved to Israel, where we lived for 11 years. My first memory is of walking to the refugee camp on the sand-dunes at night, when the oil lamp we had been given, broke. The four of us then stayed with my uncle and aunt and their huge black dog in a tiny room with a leaking roof. (Little did I know that there would be many more Black Dogs throughout my life). I remember my parents’ hardships of obtaining a place to live and jobs, whilst struggling with a new language, only from stories. I also remember the confusion I felt when I didn’t understand Hebrew at pre-school and hid behind the teacher’s skirt for a year. For a young child of parents who lost everything and were reliving their horrific experiences of running, hiding in bunkers, being forced to work in labor-camps, frightened and hungry, for six years - every minute of every day, anxiety was rife. My father lost his entire family. His family home was confiscated by the Germans. His dad died in his arms in the Ghetto, having starved to death, refusing to eat non-Kosher food. The Germans burst into a Jewish hospital and shot all the patients, his mother was one of them. His brother and the rest of the extended family were transported to the gas chambers in the concentration camps. My mother lost her father and many members of her extended family. They lost their home & a very successful Fine China business. My maternal grandmother survived the Auschwitz Death Camp and my mum’s 3 brothers also survived. My family was always in turmoil, and home life was filled with fear and uncertainty - paranoia, rage, anger, lost jobs and irrational behaviour. Everything discussed at our home had a timeline of ‘before the war’, ‘during the war’ or ‘after the war’. Hearing my parents’ horrific stories over and over caused enormous stress. My older sister and I always considered ourselves ‘damaged goods’ and still do. We didn’t know what was amiss but we knew something wasn’t quite right. I didn’t understand why, when we were very poor and had very little, all the chairs were smashed against the wall one night. Who knew about Post-Traumatic Stress Disorder in those days? I always wished to be ‘free’ and envied anyone who looked to have a ‘normal’ life. A life without ‘butterflies’ in my stomach. Then, at the age of 14, in 1968, to escape the war in Israel, my family moved again - this time to Australia, where the only ‘war’ is on the football field. I’ve lived here for 41 years but can still speak Polish and Hebrew. I love Australia. When we first migrated to Australia, my parents’ English was non-existent and mine was limited to a few sentences. I felt like a tree whose roots had been ripped out. I had lost my foundations -- my friends, my language and with it my dream of becoming a journalist and the comfort and familiarity of my culture. I missed the food, the smells and the colours of Israel. I cried every day for 3 years. As my English was a little better than my parents, our roles had changed. I became the ‘translator’, calling to connect phones and electricity, calling MBF and Medibank, making appointments and filling in forms. I longed to be just a teenager, whose parents were the protectors. My parents also wanted my sister and me to provide their social network as they had no friends. My father had many car accidents and I always got the phone call to come and translate for him, when the policemen were making fun of his accent and poor English. I was grateful that my parents found a Polish GP, which reduced the number of phone calls I had to make. My father, who had done Engineering and computer work, had to take a job sweeping factory floors and lived in fear of losing that job should he be sick or injured. (This was before the days of OH&S). Like many migrant kids, my minimal knowledge of English forced me to 'do better' in the sciences at school and university. I completed a Bachelor of Science degree from the University of NSW, majoring in Mathematics and Psychology. I would have preferred to study something more creative but my father insisted on Engineering – I lasted 1 year before changing to Science. He was 1 year short of completing an Engineering degree, when circumstances forced him to quit. This presented a major frustration in his life and he was determined that at least one of his daughters, complete what he hadn’t. As my sister was a graphic artist, I was the ‘chosen’ one for academia. I managed to learn English and finish university. I later met my wonderful partner, Peter, in the early days of my computer career. We had our first daughter, Michelle when I was 27, in 1981. She cried constantly. Post-natal depression struck me and lingered for 2 years. I couldn’t believe what I had done to myself, given up a great career to change nappies, listen to the crying and not sleep. I wanted to die so badly. It took me 2 years to get better with lots of help from my parents and Peter, staying at home and going to play-group when I returned to part-time work. Then we had our second daughter, Natasha, – the ‘Cyclone’. From babyhood Natasha suffered from hyper-active, impulsive & uninhibited behaviour. At 5 months, when she started moving around and saw a world full of magic, she turned into a little monkey, who destroyed the house, broke furniture and child-proof locks, climbed bookshelves, swung from hills hoists, drank poisons, and jumped from great heights and into swimming pools. She never crawled in the conventional way. She was a late walker and a very late talker – my ‘Late Bloomer’. School brought her enormous anxieties - a passing comment that would go in one ear and out the other of a confident and stable child – would send Natasha into sheer panic. She did not have that ‘protective coating’ that most of us do, which deflects others’ hurtful comments or actions. She was ultra-sensitive, overreacted to school teasing or any kind of discipline and often cried hysterically. She remembers very little of Primary school but even now, 20 years later, she still obsesses about being hit on the hand at the age of 5, by a stern teacher for attempting to write with her left hand. He said she ‘was a delinquent’. We moved her to another school. She was fidgety and restless, flitted from task to task, was accident prone and un-coordinated, she had to touch everything and taste everything. She always interrupted conversations. She found it very difficult to wait for her turn at games and did not like to lose but she was always losing her belongings. She wanted so desperately to be popular and mix well with her peers but it never worked out. She was ignored in the playground and not invited to parties. She would act inappropriately and awkwardly in a group. She misread social signals and came on too strong. She invaded others’ personal space. Most of her days were sad. She was very bossy with others. The other children rejected her pushy behaviour. Severe learning difficulties resulted in bad and impulsive behaviour, attention seeking, crying, vomiting, being bullied and belittled. Her reading and writing skills were almost non-existent. She was labelled an ‘attention-seeking drama queen’ by teachers. Anxiety, obsessions, shopping sprees, irrational thoughts, irresponsible behaviour & panic attacks followed through High School where worse physical and emotional bullying continued. She would always get herself into trouble. She was like a mouse running around faster and faster inside a wheel. Her relationships were always in tatters. I was constantly called to come and collect her from the Sick Bay. She dropped out of school at 16 and went to Tafe and completed a Chef’s Course. Trying to find a diagnosis for Natasha’s erratic behaviour was like ‘Ploughing in the dark’, stumbling across bits of information here and there, that would eventually lead to the correct diagnosis but not for many years. I read a book “Driven to Distraction” about ADHD (Attention Deficit Hyperactivity Disorder). To my surprise, it explained so much about my relative, who, although in total denial and undiagnosed, fitted all the criteria. It was a revelation. Could there be a genetic link? For Natasha, first there was the ADHD diagnosis at the age of 12 and then again at 16. Although we could tick almost all the boxes for ADHD (except for aggression), it still didn’t completely explain her behaviour, especially the mood swings. Our endless search for help went far and wide: Behavioural Optometrists, Clinical Psychologists, SPELD for Dyslexics, even Speech therapists. We dragged the poor girl to countless assessments in search of an answer. Each specialist made Natasha’s illness symptoms fit into their own ‘agenda’, diagnosis and their potential remedial solution; not one suggested mental illness. An example was the Behavioural Optometrist. In order to help Natasha’s co-ordination, we got up an hour early every day to toss balls into buckets, with the left hand, whilst skipping on one foot and then the right, whilst touching 7 points on a drawn body map, walking a straight line and performing many other crazy feats with our left foot up our nostril. We went to support groups full of desperate parents, made endless phone calls and attended many lectures. People would give us telephone numbers of parents of children with similar behavioural problems. Each new contact brought new hope, each phone conversation the expectation of finding the magic formula which would solve Natasha’s problems. We wanted a quick and easy one. But this was not to be. She was prescribed Ritalin but refused to take it. As well as the constant crises, Natasha’s multi-tasking was an extremely tiring experience. While the rest of the family sat down to dinner and cut up a simple pie and peas with a knife and fork, ate and discussed our day, Natasha would see an amazing pie, with shivers up her spine she would shove chunks of the pie in her mouth and taste every ingredient, lick her lips whilst changing the song number on the CD player. She would notice the clock on the wall and change the time with sticky fingers. She would finish the delicious pie, licking her fingers, swivel in her gas lift chair to the video recorder and change the tape, set the VCR player to record ‘Buffy’, call a friend on the mobile and sing out loud. She was ‘chatting’ on the net, toggling to Photoshop to create a card for a friend, editing a Word document, writing her resume, checking a web page for movie sessions. Oh my God, quick, she would rush to stir the delicious casserole on the stove that she started cooking an hour ago. The kitchen was on fire! Call the Fire Brigade! And now she would have to clean up the mess. Natasha was exhausted. We were exhausted just watching. The first minor manic/psychotic episode was around the age of 16, another major one when she travelled overseas on her own at 19. These were interspersed with periods of depression. She attempted suicide twice: once with pills and once by slashing her wrist. She didn’t want to die; she just didn’t want to live. Then one day, Michelle came home from university where she was studying Psychology. The students in her class had been shown a video “Mum, I know what Natasha is suffering from – it’s Bi-Polar”. That was the first time I had heard the word! Although I had no trouble with English, I may as well have been speaking in a foreign language. The kind of help, mentally ill people, and their carers, need, was totally misunderstood. If this was my experience, what would it be like for people who didn’t speak English or were too ashamed to come forward? So I searched for any information, especially real people’s experiences of the illness. I read an article in the Good Weekend about a 1950s swimmer John Konrads. It described his life, his behaviour, the highs and lows, successes and failures. This was Natasha to a “T”. The article recommended that sufferers contact The Bipolar Clinic. But upon calling them I was told that until Natasha was diagnosed with Bipolar, they couldn’t help. My GP, who had seen Natasha over the years, in ‘full flight’, astonishingly insisted that Natasha was simply badly-behaved and possibly suffered from a Borderline Personality Disorder, and definitely not from Bipolar. She would not refer me to a Psychiatrist. The Bipolar Clinic would not recommend a Psychiatrist; “Sorry, we are not allowed to do that”. “Please, at least provide me with a name of a local Bipolar specialist” I begged. Grudgingly, she gave me a name, only to be told by this psychiatrist’s receptionist, that I could not get an appointment for 6 months! A very long time in a Bipolar sufferer’s life! When we finally saw the psychiatrist, so much had happened. We were so hopeful but on that particular day, Natasha was on a ‘low’, quiet and uncommunicative. The psychiatrist wanted me to “step outside” and was not interested in my experience with Natasha’s behaviour. I insisted on staying! The psychiatrist questioned her briefly about her moods and decreed that she did not have Bipolar, his diagnosis was Depression; “But you haven’t seen her when she’s manic” I pointed out, simultaneously angry and despairing of this token investigation of a problem which had been slowly destroying us all for two decades. But, said the expert, the episodes of mood swings did not last long enough to be Bipolar. He prescribed anti-depressants, which just elevate the mania!!! We were told to come back in six weeks. SIX weeks!!! 2 weeks later, I had to call him. Due to her manic behaviour, Natasha had lost her job. She was walking the streets at 2 am and was picked up by the police and taken to her local Crisis Centre. She was making large purchases, giving her possessions away, booking overseas holidays, buying medical aids – bandages and walking sticks and having panic attacks. Her room in ‘the house of horrors’ she shared with 8 people, resembled the one in the movie with a Schizophrenic Russel Crowe ‘A beautiful mind’, walls scribbled on and knee deep in bits of paper, cigarettes, rotting food and lots of lists. This same top Bipolar specialist finally agreed that she WAS suffering from Bipolar. The diagnosis was confirmed when she was forcibly admitted to a private clinic, with the help of the Crisis Centre, and observed over a few weeks. She was 20. Unfortunately, it took a total breakdown and hospitalisation to start getting the help we needed. My parents visited Natasha in the clinic only once and when I showed them around and said I was happy she was there, getting help and that it was a good place, my mother shook her head sadly and said “Happy? Good place? We would only wish it on our enemies, “tfu tfu tfu”. Far from being happy, my parents were devastated and ashamed. I come from a very creative family of film directors, producers and reviewers, photographers, composers and authors. We even have an Oscar nominated cinematographer in Hollywood – who filmed movies like Ghost & Terminator. These people were not always considered ‘normal’, were expelled from or dropped out of school at a young age. I mention this because Natasha has inherited the creativity, and a creative mind does not work sequentially from A to B to C. Rather it ‘swims’ in endless ideas and goes off in many directions. Creativity is a ‘hunger’ that has to be satisfied. Many creative people also remain child-like forever. Combine this with a predisposition for mental illness and it can be a formula for disaster. Mental illness, however, was never discussed by my family, NEVER! My grandmother (although a progressive business woman), would berate my mum, if she mentioned to her friend that my sister was coughing. “Who would marry her later, if they knew she was a sickly child?” Only after visiting Natasha at the clinic, did my mum tell me (reluctantly) that Mental Illness had affected members of my family on both sides and one relative spent time in a Psychiatric facility. My cousin later described mum’s brother (who lived overseas) as a manic-depressive. But it was something they were so ashamed of and hid from other people and also did not understand. ADHD, mania and depression in early 1920s Poland, “did not exist”. Even today, Natasha is told by family members “If you were more normal, you’d have more friends”. Although he listens to Polish radio and I show him pamphlets and information on mental illness, my father still insists that “she will grow out of it” and that she should “stop taking that medication”. Total denial. But that was their culture. You didn’t air your dirty linen in public. My father believes my mother, who battled Bladder and Lung cancer for 2 years, was ‘killed’ by the doctors at the hospital from the medication she took for Arthritis. We were NEVER to say the word ‘Cancer’. So, even some physical illnesses were not allowed to be discussed. OCD (Obsessive-Compulsive Disorder) is also prevalent in my family. One relative exercises for hours a day – (although exercise is not considered an obsession in our society – riding many kilometres on a bike at 3 am could be). Strange OCD behaviours I have encountered include buying surplus quantities of ‘anything that is ON-SPECIAL’, endless peeling and shredding of fruit and vegetables, photocopying, baking dozens of cakes and buying so many unnecessary cheap clothes. Each obsession lasts a few months. It is hard to reason with some of my relatives. They have always refused to talk about their problems as ‘they don’t have any’ – it’s always the other person who is to blame for erratic behaviours. Sadly, the shame and denial of mental illness and refusal to seek help, tormented all around them for many years. For me, sometimes the only way of coping with them, is to walk away for a while. Unfortunately, there is no happy ending to their stories. After 3 and ½ weeks in the clinic, Natasha was still manic, irrational and manipulative. The Zyprexa she was prescribed had only made her weight balloon so that she looked pregnant. The Psychiatrist then tried Lamictal (an anti-epileptic) which proved to be a miracle drug for Natasha and she could think clearly for the first time in her life. However, it was not on the PBS for Bipolar, only for Epileptics, which posed a new set of problems such as costing $300 a month. This Psychiatrist, although decreeing that Natasha was unable to work, refused to fill in Centrelink forms required for Natasha to receive the disability Pension, which may have helped us with the medical expenses.
Autumn and winter in 2006 passed. We finished our book. It took us a year to publish. Then spring waltzed in but we were not dancing as Natasha, again was marching to the beat of a different drum. The mania had returned during a hairdressing course. Her hair was different every day – cut, bleached, coloured, chemically straightened and cut again. She handed out leaflets around the city offering to teach English and conduct scenic tours around the Sydney beaches. She was manic again but we didn’t act fast enough to get medical intervention. Natasha was hospitalised again in January 2007 whilst she was on holidays in the Central Coast. The summer mania was being mismanaged by her psychiatrist, not reducing the anti-depressants and doubling her Seroquel (anti-Psychotic) to dangerous levels. She was sitting in the street – handing out her belongings to passers by. Her credit card and driver’s license were taken. A police warning moved her on. Then she went to a motel her late grandmother used to take her to on holidays and insisted they show her the room they had stayed in (years before) and took many brochures. The owner called the police who took her to Wyong psychiatric ward in a Paddy Wagon. She had to be subdued by 6 nurses and put into isolation in a padded cell. We raced up to Wyong from Sydney. That was the beginning of 8 long and harrowing weeks. Her psychiatrist became un-contactable. The hospital could not get her records from him. Not answering pleading phone calls, faxes or emails. He just washed his hands of her. What unethical behaviour! They had to rely solely on the information we could provide. The mania soared. She was totally psychotic – unable to distinguish between reality and non-reality. She insisted that she was deaf and mute & kept signing with her fingers “I can’t hear you”, she was a minus sign or a plus sign, a square hole and a round peg. She was a chameleon and kept repeating the same thing over and over. She thought she had lost a baby, Melody, or she WAS the baby or she was my mum (who had passed away recently). She didn’t really know we were there. She was uninhibited and danced for the other patients. She was reading the bible, converting to Christianity and then to Islam. Natasha was so anxious, ranting, crying, laughing, begging and distraught. Twice she was taken to the emergency room after becoming tachycardic and fainting during a panic attack. But at least in this hospital, we felt as if mental illness was better understood by the medical staff. We were told by a mental health worker there, that one way of understanding what Natasha was seeing was as if she was watching 1000 TV screens – Natasha’s mind was flickering from one screen to another. She knew one picture was real but didn’t know which one. Seeing her in that state, I felt as if I was barely keeping my head above huge sea waves that kept on hitting. I found it hard to talk to family & friends. As if I opened my mouth to speak, I would drown. I couldn’t see how my Natasha would come back to us. Even the manic Natasha. Michelle, who was always so supportive of her sister and loves her so much, kept reassuring me she would and she did. After 8 weeks in 2 different hospitals, with the enormous efforts of the Psychiatric staff and being prescribed Lithium, Natasha came home relatively stable. I say relatively as she was still very manipulative. After a manic episode, the family’s recovery is slow. After the Cyclone hits us again, like the people devastated by tornadoes, floods and bush fires, who lose everything and have to rebuild their shattered lives, we lose our structure, sanity and sometimes our jobs. It usually takes us a few months to ‘rebuild’ and recover. Natasha often doesn’t understand our need for some ‘hiding from the world’ and some ‘silence’. “Mum, can Vincent (from POW Psych ward) come and watch DVDs in our lounge room and stay the night? “No, darling, please, NO”, “but mum…”, “NO, where are you?” “Outside the front door – with Vincent”. I had enough – we had to take ACTION or Tough Love (words do not register with an irrational person but actions do). We let them in, then packed a little bag in our bedroom and ‘disappeared’ to a motel for 2 days. I switched my mobile off. Natasha was panic stricken and called all my friends to find me. As Natasha wanted to have people over & refused to respect our rules, her only option was to move out. - We called the shelter for the homeless she booked herself into - ‘THE LODGE’. She was there for 3 weeks. When we finally went to pick her up to come home on approach in our car – I saw a very large homeless lady carrying bags outside the lodge. I said to Peter “how sad, that could be Natasha” - Oh my God, it was Natasha. She had put on all the clothes she had taken there over several days, layer upon layer, as she didn’t have a suitcase. A very resourceful girl. We always provided unconditional love but the unconditional support had to have conditions, so that we could survive and be around to help her. Action did the trick and she has never brought strangers home since. We do sometimes have to remind her, when she is being unreasonable, that “there is always The Lodge”. Once the Lithium took effect, (it usually takes around 5-6 weeks), things improved. The un-contactable psychiatrist had refused to let Natasha take Lithium as he claimed ‘it would change her personality’. Yes – it has, but oh what a change. What is so wrong with changing from all I’ve described so far to being rational, cautious, sequential, polite, considerate, responsible and especially independent? Whereas the manic Natasha would preface every other word with ‘F*ck’, I rarely hear that word now. The government is finally making progress in helping mentally ill people. The incredible help Natasha was given by the NSW government has enabled her to start living. She was in such a bad state at POW and seeing how desperate, exhausted and financially crippled we were as a family, assigned her a Psychologist, a Social worker, and a Community Worker. They all worked so hard to apply for and receive subsidised accommodation through the HASI program, a disability pension from Centrelink and organise a support worker through NEAMI. Natasha has moved out of home into her 1 bedroom flat and has a cat, Kyra – her new friend. She seems very settled and happy and is so rational, it’s surreal. She even budgets! She has been given a new chance at life. Natasha is now seeing an excellent Psychiatrist. He provides consistent monitoring. (A diabetic tests their blood sugar level 4 times a day but mentally ill people are often left on a medication without review for weeks or months). The Lithium keeps Natasha stable and the Aropax keeps the severe depressions at bay. This Psychiatrist’s advice is never to take on too much, everything part time, with days in between to rest and not be exposed to too much stimulus. Natasha completed a TAFE course in Children’s Services last year and for the first time in her life was able to concentrate and actually enjoy studying. Although she had to take a part-time load as full time was too stressful – she did it - with Distinction! A huge achievement given all the obstacles her illness had presented. She could now use her talents not hindered by her busy and out-of-control mind: her creativity, her original ideas, her love of children, her whacky sense of humour, her amazing cooking talent, incredible eye for colours, and amusing writing. She also has great compassion & empathy for people, especially the disabled. What a beautiful trait. When Natasha left home so improved, I fell apart. I had lost my “job”. I was very erratic. The Psychiatrist diagnosed me with “a touch of” Bipolar. Just because some days, I was manic, unable to sit down for one minute, doing many things at the same time, talking rapidly & starting a new business? Depressed some days or some moments, unable to sleep? I can’t quite accept that yet, but maybe he’s right? I am probably a version of the Manic or depressed Natasha but on sedatives. Maybe that is what enables Natasha and me to have such an intimate understanding of each others’ feelings. This year (2009) Natasha was accepted into the University of NSW and in March started studying ARTS/Psychology and Film Studies – Part-time/half load. She was juggling information days, mentors, disability assistance meetings, forms for the Mental Health support people, long queues to Student Services and buying books, assignments, experiments, essays, presentations, public transport, deadlines, results, constant monitoring of the university web site and keeping up with her new friends. How do I know all this? – I was there with her. I was at Uni AGAIN. But Things were going well…well…. Oh, wait, that was SOOOOOOOOOO LAST WEEK! After 7 weeks riddled with severe anxiety and panic attacks, she dropped out of Uni. A relief for us ALL. Being in an environment where she feels ‘safe’ and can succeed is of ultimate importance for Natasha. TAFE’s smaller, more structured environment and more hands on and less theory approach, suited her well. The big, impersonal, pressure cooker of university didn’t. She also quickly realised that the essays she had to hand in were more ‘Patrick White’ and not at all Kathy Lette. So, the ride continues but with it the most important element for mentally ill people - learning to manage the illness by recognising limitations. Natasha has to be able to recognise and either avoid stressful situations or withdraw from these before they land her in hospital. Natasha and I are on the MMHA CALD Speakers Bureau and talk at mental health related functions to promote awareness and reduce the stigma of mental illness. We admire Natasha for being so brave and talking about her experiences with Bipolar, not years after the worst is over but whilst it’s happening when it could still cause damage to her reputation. She is inspirational. 2 years ago, I couldn’t say we have a happy ending. But at the moment I feel Natasha has triumphed over the main ‘demon’ and I hope it will continue to be under control. Now the battle is with panic and anxiety. Medication is not the whole answer here – yes – Valium can suppress the symptoms of panic and anxiety but Cognitive Behaviour Therapy with a good Psychologist will hopefully help with some of the underlying issues. Another form of therapy for Natasha is writing. She writes when she is depressed or manic, so she is now writing a few chapters for our second book – ‘Panic Stations’. There is no simple or single solution to mental illness, no quick fix, but never give up. Maybe we have not won the war but we have certainly won every battle and we will continue to do so. I wish all the best, for those in similar circumstances and hope this story has helped others. As Natasha says “if … even one sentence can help someone, then that’s good enough for me!” Natasha was recently asked what her biggest achievement has been so far: Her answer… “STAYING ALIVE”. For those interested in our book “The Bi-Polar Express”, you can visit our website www.thebipolarexpress.com.au. Natasha Simon’s Story I’m Natasha Simon, 25 years old and I suffer from Bipolar disorder, Anxiety disorder and a few other conditions. All my life I knew I was different, I didn’t fit in. I always felt I could do everything – but things never worked out for me, I’d get depressed for no reason or be hyper-active. I don’t remember much of my childhood and only snippets from Primary school. I do remember being hit on the hand with a ruler by a teacher in Kindergarten class, because I was using my left hand and that apparently left was wrong. I also remember being bullied and being called stupid, a moron, a delinquent and a drama queen. I would get anxious at school before I knew how to spell the word, or know its meaning. I hated Primary school – it’s not a place for children. I was very distracted, anxious and totally miserable. I only liked drama and movies, which were unfortunately not a part of the school courses. High school was even worse and I dropped out at 16. I didn’t understand that how I was behaving was wrong and caused all the people around me so much stress. When I was manic, I was deliriously happy, everything was so pink and yellow and rainbow. However, my head was always aching with the millions of thoughts running through it. I started smoking cigarettes at 14 and Marijuana not much later. This blissful haze was the only time when I could just have one thought at a time in my mind and it was heaven. But the consequences were terrible. While smoking, my thoughts stopped and all anxieties were extinguished, but then when the gear was out of my system I was more anxious than before. It’s the same with prescribed medication – you must take it regularly but it is a better option than illegal drugs (or is it? Marijuana rots your brain but then Lithium rots your kidneys and anti-depressants affect your liver). What I know from my experience is that you certainly cannot mix the two. I did so many irresponsible things and damaged my reputation as a human being, not to ignore the physical damage I’ve caused myself – such as burning large holes in my scalp when at 19, I bleached my hair in Greece to colour it blue. This was during my first full-on manic episode on my long awaited trip overseas. I would get very depressed but when I am depressed, I am so unhappy. But although my parents are frightened, they are less frazzled than when I am manic. When I’m manic, I’m extremely happy but the people around me are unhappy. The mania would often start around daylight saving time change in October. I hate bright lights and prefer dark rooms. The depression would always lift after a few months. I attempted suicide a couple of times but it was more of a cry for help! When I am manic I act like a 12 year old and when I am depressed I feel like a 40 year old. I just want to be 25!! People often ask me to look back and tell them when I realised I had a serious problem. I always knew I was different and a bit off centre but there were two major break-throughs in my discovery of my illness: the first when the crisis centre team came to take me to the clinic; at this point I knew I had a problem but really had no idea that it was that bad, bad enough to take me away. The second was at the clinic when I saw all the patients and found out that most of them had been in there a number of times, some even up to ten times and beyond, and I realised I didn’t want to go back. I wanted a one time, in and out experience there, I knew my illness and would learn the ins and outs so I could stay stable and strong and never look back, more to the point, never go back to club meds. At the clinic I also started keeping a journal, which became a part of our book – The Bi-Polar Express. This book comes with its own WARNING, it contains:
and may contain
During my manic episodes I often get asked this question: “why do u want to be the centre of attention?” All my life I have been into acting and role-play. Also I was picked on at school and was only accepted when the kids found out I smoked cigarettes. I got bullied at school, pushed into cars and down stairs, rumours flew and I ended up dropping out of school. I went on to do a chef’s course, then decided I didn’t want to cook the same dish everyday and never get to eat it. So I worked, saved, and worked some more. All I wanted to do was to get away. To Scotland, preferably. I did a film director’s course, but decided that actors are arseholes, so I finished the course but didn’t take it any further. I worked again, this time I was over 18, so pub work was for me. …I had never in my life felt sexy, but when I was behind that bar nothing could stop me; I was a sex goddess. Need a self-esteem boost? Don’t call a 1900 number, go work in a bar for a day. After all the “what time do you finish?” and the “so can I have your number?” comments you’ll be riding home on a cloud, or in a sexy man’s BMW. OK, enough dreaming…… You know what? I’m not saying any more about this…. As you can see I haven’t answered the question and my mind went in so many directions…I should have answered “(when I’m manic) – I want to be the centre of attention because it’s all about me, me, me, me and me” but I don’t know why! I was diagnosed twice with ADHD but still it wasn’t the whole picture. Ritalin wasn’t for me – I just knew it! So why am I so different and why do I make so many mistakes? What a lot of people don’t realize is that self-sabotage is a part of bi-polar. Self sabotage is where you mess up everything you do, everything you touch turns to sh*t. When things are going well you f*ck them up. Subconsciously you feel things are going to go sour so you think “if things are going to go away I may as well push them away, at least then I am in control.” Every time things are going well I f*ck them up in any way possible. I self-sabotage. I turn good things into bad, great things into horrible. Without realizing it, I push my friends away, shout at people for no reason, run around messing up my parents’ house, therefore running the risk of losing my accommodation, I spend all my money in one go so I’m left broke or in debt for a month, and most importantly, the one thing that keeps me together is the stability of work, and I can’t even do that without f*cking it up. Basically I’m a f*ck up, and f*ck ups can only do one thing right; f*ck up. Why do I do this? I don’t know. Why can’t I stop this? I don’t know. Unfortunately it’s not like depression, it’s not a problem which can be solved with meditation and medication. The only thing which can help is hours and hours, weeks and weeks, years and years of psychotherapy — and that’s not a cure, that’s more like putting a band-aid on a broken leg. Hopefully I can hold it together. Bi-polar people need balance. We need days off work to recover and exercise and chill out and sleep and be still and calm. But we also need structure. I don’t know, it’s all a little confusing, every question is just another question, and I see no answers, not even suicide is an answer for this problem, but then what is the solution? Well if I knew that I wouldn’t be writing another book about what I’m going to do next. So if you have the answer please, write me a letter and tell me what to do, or better still, write a book, so others in the same boat can grab a paddle and we can all meet for a drink and talk about how great we are for overcoming self-sabotage and managing bi-polar. At the end of the day, with the right medication and therapy, and my family and friends, I believe I can live with almost any problem. My second and worse breakdown was in Jan 2007 and I was hospitalised for 8 weeks in a manic state. I started smoking pot again and playing with my medication. I booked a holiday to the central coast for me and my boyfriend at the time. Within an hour of being there I was running around the streets talking to strangers, jumping into the ocean at 2am, giving away my stuff (which is common in mania) and trashing my hotel room. After 4 days and very little sleep I flipped and the police picked me up and took me to Wyong Psychiatric Ward. I hated it, I went tachycardic and had tubes stuck everywhere. The patients were pretty scary but they were scared of me, so I must have been much worse, the nurses were really rude and mean, the first night I asked to call my boyfriend and they had 6 nurses and security guards pin me down and jab me in the bum with a tranquiliser. I just didn’t understand why I was here, where I was and why I couldn’t speak to him. Talking about it makes me shiver so I’m gonna move on. I was there for 3 weeks before I was settled enough to get transferred to POW. The treatment was better and so was the food. There things happened which would start the wheels turning to change my life again. In POW I had a lot of support and many different types of workers helping me; they got me accepted into NEAMI which changed everything for me. After 5 weeks I was released back into the wild. I still find it hard to revisit my hospital stays. It’s too traumatic. I imagine it’s like being in prison. But, thanks to medical intervention I was helped to get over those terrible times. I now see a very supportive and careful psychiatrist and am on the right medication. I was assigned a support worker from Neami, who helped me so much on my journey to wellness and I was given assisted accommodation through HASI – thanks to them I am now on the road to recovery. I have finally been able to move out from my parents’ home successfully. No more trashing their place. I have a 1 bedroom flat, my place. I can start to be independent. I have a cat, called Kyra. I’m still not sure what I want to do ‘when I grow up’. I completed a TAFE Childcare course, with a distinction. I love children. I attempted University this year, but after 6 weeks dropped out due to extreme anxiety over every part of uni; the assignments and high expectations, the format yet lack of structure, barely knowing anyone, not fitting in, shocking experiments aimed at inducing anxiety, yeah - like I needed anymore anxiety. Even catching the buses and walking down to uni was nerve wrecking. It wasn’t the right place for me, and I had to drop out to stay sane, plus I was running out of valium. Now I am really enjoying speaking with Mum at Mental Health related events about our roller-coaster ride. MUM — my mother could not be more supportive or caring if you paid her. She would give her right arm to make me happy and she is the only one who really understands. I am on a roller-coaster, and, as I may have mentioned earlier, she has been at the front since day one, riding the ups and downs over and over, around and around, every bump on the rails, every curve and every happy or sad moment. Dad has been on the ground, making sure that, if we crash, we get back on the track, but when I fall off the track mum is the first one to come to my rescue, every time. People with problems, whether similar or not, share some understanding of the hardship. But mum understands every little feeling I have, because she has been there for them all. So even though many people hop on and off my roller-coaster, some stay a month, a year, or longer, my mum is the one who has been right up the front the whole time, and I know for sure she will never get off, no matter how bad things get. And that is why I love her and always will. Thanks mum; you really are the best mum I could ever ask for. I’d really like to finish by saying “and we all lived happily ever after…” but I can’t say that. Yes, things are looking ok right now, but with bi-polar things could look down tomorrow and then up the next day and so on and so forth. All I need is my family, a handful of good friends, the correct meds, therapy, and a packet of ciggies to keep me okay for now… If you get to read my book, you will follow the ups and downs, the twists and turns, the high highs , the low lows, back and forth, faster and faster, my Bi-Polar roller-coaster life. But always keep one thing in mind: you can put the book down and get off my roller-coaster ride….. I can’t. If you would like more information about my book, have a look at www.thebipolarexpress.com.au Yüklə 1,51 Mb. Dostları ilə paylaş:
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