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Chapter 2

Eating in emergency

Mary first came to see me in the spring of 2015 when she was 25 years of age. She was an imposing figure — broad framed and tall, striding into my rooms with apparent ease and confidence. Mary was not one to suffer fools gladly, if at all. She had experienced the worst of mental health services and had developed a healthy scepticism for psychologists and psychiatrists. But under this external strength and doubtful gaze, there was a palpable fragility. Mary was an odd mix of cutting wit and a soft interior — an iron fist with a marshmallow centre.

Within the opening minute of our first meeting she was talking about death or, more particularly, her death. It was clear that her life had been dominated by a genuine terror of her own passing. All she could think about were the many ways that she could die. ‘We’re so fragile, Ross’ she told me. ‘Haven’t you realised that it can happen at any time?’. She imagined death from panic attacks, collapsing in elevators or on public transport, allergic reactions, choking, poisoning, infection from germs and a variety of obscure illnesses. She had fears of cars, planes and other modes of transport. She was even terrified that she might inadvertently take her own life by suddenly driving into oncoming traffic. Mary told me that she couldn’t listen to certain songs and artists that she associated with death, and she had magical mantras and rituals that she had to perform to eliminate the chance of death when dark thoughts or images arose in her mind. She was particularly scared of being alone when death finally came to call on her. ‘I can’t face the possibility of fading into death’s arms with no one there — no one to offer me support, no one to comfort me’.

Diagnostically, Mary was a complex woman. She met the standard criteria for Obsessive-Compulsive Disorder (OCD), Panic Disorder, Agoraphobia, Illness Anxiety Disorder and, at various points, Major Depressive Disorder. She had extremely high scores on virtually all the psychological questionnaires and surveys that I administered. Her depression and anxiety scores placed her in the most severe one per cent of the community. When I tested her fear of death on commonly used questionnaires, her profile of scores was extraordinary. Some people fear oblivion — not being, not existing, missing out on events to come (that is, the death of self). Others dread the actual process of dying, whether it’s the slow decay of the human body from tumours or a more specific terror of the actual moment of death (the dying of self). Mary’s test scores showed that both issues were extremely prominent in her mind. She had the highest death of self and dying of self scores that I had ever seen. Surprisingly, despite all these difficulties, her self-esteem test scores were very positive. Again, strength and weakness in the one package.

Of all of Mary’s difficulties, her most disabling symptoms related to eating behaviours. She reported extreme terror around the possibility of dying by choking or through anaphylaxis. She worried that she might suddenly develop allergies to foods that she had previously no problems with. She had not eaten peanuts, or any legumes, for many years, and her diet was extremely restricted. She was essentially limited to bananas, watermelon, onions, tomato and bread. Moreover, if she found a ‘safe’ food or fluid, she would restrict her exposure to a single brand of the product. For example, when I met her, she could drink vodka, but only Absolut vodka. ‘How do I know what goes on in the other factories? How do I know it’s safe?’ she told me. This protective behaviour even extended to bottled water — Mount Franklin was not just preferred; it was the only brand of water she could drink. And she always drank with her jaws closed tight. She would suck fluid through her teeth to protect herself against foreign objects. ‘What if there is glass in the bottle? Even a tiny shard could kill me. Why would anyone take the risk?’.

Right from our first meeting I was struck by how limited and difficult her life had become. How can one comfortably eat anything with the constant threat of allergic reactions, choking, poisoning and consuming glass and plastics? ‘Well’, she told me in a whisper, ‘when I’m out, I eat most of my meals at the hospital’. I remember how stunned I was when Mary revealed this to me. Initially, I didn’t even understand what she meant — I was just deeply and profoundly shocked. She explained that she would buy food and drive to the nearest hospital emergency department and sit outside to eat. ‘Ross, you just never know when it’ll save you’ she declared. ‘I just want to know that doctors are there if something goes wrong’. In situations where this wasn’t possible, she would comfort herself by at least knowing how close the nearest medical aid was. She refused to visit any part of Sydney that was more than a few minutes from an accident and emergency department, even if she wasn’t eating.

In so many ways Mary was among the most disabled women that I had ever met. In addition to her fears, her mood could rapidly change. She went through regular periods when she was too sad to leave the house. During the early part of our work together we would often talk on Skype because of her immobility. At the best of times, given her agoraphobia, she could only attend my rooms in the company of her partner. However, when her mood deteriorated even this wasn’t possible.

I knew from our first session that Mary’s treatment was going to be slow and long. She’d been weakened by years of chronic disability, and I feared that her chequered history with mental health services would also hold her back. But as time went on, she grew stronger and stronger in therapy. Step by step she slowly advanced. I taught her that the treatment of anxiety was like trench warfare: ‘Just move the trench forward ten paces, bunker down, and don’t let the enemy break through your defences. Small gains are all we need between sessions, Mary — that’s the way we’ll win the war’.

As weeks turned into months, the gains grew larger. I could see Mary becoming empowered in her recovery. She became more positive, optimistic and animated in sessions. She was increasingly engaged and attentive — an ideal patient who was eager to learn and even more eager to recover.

At the time of this interview, Mary had seen me 54 times over three years and she had dramatically improved. Through daily exposure to feared foods and fluid she had slowly mastered meal times. Her first steps were small — merely changing the brand of her bottled water was a cause for significant celebration in the opening weeks of treatment. Slowly she added more foods, and gradually she eliminated all her safety behaviours and magical rituals. She stopped eating near hospitals and slowly reclaimed her life.

Mary is now eating freely, coming to sessions on her own, and travelling with much greater ease. Her mood has been stable for many months and she is completing a course in Fine Arts. She recently married and is enthusiastically building a life with her new husband. To say that she is free of anxiety would be an overstatement, but she is an entirely different person to the woman I first met.

Our interview with Mary

Ross:	Thank you so much for talking to me today, Mary. Could you begin by telling me about your family and life at home as you grew up?
Mary:	I didn’t have a very normal childhood, I guess. My father left when I was about two. My mother left when I was about three. So I grew up with my grandparents until I was five or six. My mum came in and out of the picture at various points in time. I don’t blame them really. They were both quite young. I think my dad was 19 and mum was 25. So initially I grew up without them.
Ross:	But your mum would re-appear. Tell me about your relationship with her in those early years.
Mary:	Very co-dependent, I think. My mother made the world around me a very unsafe place. She frequently told me, from a very young age, how dangerous the world was. So I clung to her whenever she was around. This created its own problems because she suffered with psychotic episodes, even back then. She would see things and hear things and have outbursts of paranoia when I was young. I distinctly remember them. They were like small traumatic episodes in which I came to see danger in things that were quite safe.
Ross:	I see. And your father? Did he also re-appear?
Mary:	When I was very young, he wasn’t there at all, and then he came back when I was five. He’s been a figure in my life ever since.
Ross:	And what’s been your experience of the man? How would you describe this relationship?
Mary:	He’s not on my birth certificate, which I always find really amusing. I think it’s because my mum is indigenous and my dad is white. I think she was too scared to put him on the birth certificate because there was some irrational thought that maybe I’d get taken away. The shadows of the stolen generation were never far from her mind.
Ross:	That must have been very difficult for her. Can I ask, when your mum and dad returned to you, what role did your grandparents continue to play in your life?
Mary:	Not too much for many years, because my mum took me away. I was around five years of age. I remember the day distinctly. We were at the train station in our country town. I kept looking at my grandmother — I was terribly scared that she was going to die. I’m not sure why I believed this — perhaps because she was old in my mind. We got on the train, and as it pulled away, I saw her fading in the distance. We didn’t return to the town for another three or four years. So I went a few years without seeing either of my grandparents. I missed them.
Ross:	I see. I was going to ask you about any early losses that you experienced in your life, and you’ve already mentioned one — the loss of grandparents — of being pulled away from your grandparents. What, if any, was the impact of this event? And of any other losses in your early life?
Mary:	I didn’t have a lot of losses, but death was talked about a lot in my family. Right across my childhood, death was a regular topic within my home and within the circles of my extended family. Tales were told of the people who had died. Sometimes I even thought, (and at times I still do), that they were imaginary people that my family made up because they were always such traumatic stories. They talked about an uncle that got tragically and mysteriously hit by a car, and an aunt who got killed by the hospital because they wanted her organs. These are the kind of stories I grew up with from a really young age. I started to fear any symbols of death or loss or departures.
Ross:	Can you give me an example?
Mary:	Sure. I remember the hit song Leaving on a Jet Plane. It always triggered fear in me. I’d cry and cry when it came on the radio because I came to believe that it either meant my grandmother was going to die or my mum was going to leave me again.
Ross:	I see.
Mary:	Yes, so I always had that fear, even after I left my grandparents. Since that day on the train station when they faded into the distance, I’ve always been waiting for them to die. It’s now 23 years later, and they’re still not dead. (Mary smiled quietly to herself and shook her head).
Ross:	Mary, I was going to ask you about losses or traumas in your parents’ lives, perhaps occurring before you were born. You’ve mentioned that they talked about uncles. They talked about other people that had died. If I’m understanding you, they talked about these happenings a lot. As time went on, did that continue? Was it clear that these events had had a big impact on them; the people in their lives that weren’t with them anymore?
Mary:	(Mary hesitated). It’s a weird thing. They talk about death a lot — death has clearly haunted them. I don’t think they’ve ever really processed the big losses in their lives. My mum was Indigenous, and so her trauma has always been there. My grandmother was part of the stolen generation. She lost a sister who was taken away. And she lost others to early death. All her other brothers and sisters died, except for one that’s still alive. She was one of nine, but she lost them all, one way or another. Death was such a big part of her life, and the world has always been a very unsafe place for her.
	And the trauma was passed down — it infected my mum. She lost her favourite uncle and her favourite aunt, and a few other important people. My mum also had several other distinct traumas. I’ve always believed that she was molested when she was younger too. She’s very fixated on molestation and rape, something that she’s never talked about. She was there when her sister’s son got badly burned in a fire and lost his leg. So she’s had all these incidents — such a traumatic life. And then there’s the imaginary traumas of her world of psychosis. Her life has been so very difficult.
	My dad’s life was similarly painful — his existence has been pretty brutal. He was one of three boys. His father was a Vietnam veteran. His mum was an extremely severe alcoholic who died in her thirties of liver failure. When she died, his father deteriorated into a type of shutdown. My father had been born with fetal alcohol syndrome. His oldest brother was severely handicapped. So their mum died, and their father wasn’t coping. They got a stepmother who was violently abusive towards them — she used to beat my father regularly. And then they threw my father out of home at 14. Two years after his mother died, he got kicked out of home. He grew up on the streets in Parramatta in men’s shelters and churches and youth hostels.
Ross:	That’s just awful Mary, … so much suffering. This has obviously affected you greatly. (We sat in silence for 10 seconds or more, Mary looking downcast). Can I say, for a young woman, you have a lot of detail in your mind about all of these things. You can recount with tremendous accuracy the lives of your mother and father, but also your grandmother’s life, including the number of siblings that she lost, and being part of the stolen generation. Is that because you’ve heard the stories a lot, or because you had a deep interest in your family history or some combination of those factors? Why do you think you can so readily recount all of these histories so very thoroughly?
Mary:	I think it’s both. I think I have a very vivid mental life, and I had a very vivid imagination as a child, and so all of these people that I’d never met became real human beings to me. Although I’ve never seen photos of them, I have an image of what they look like and the world in which they lived. But they were talked about a lot. My family rehashes their stories a lot. They’re big on storytelling, I think. And as I’ve said, some of the stories don’t even make sense. There’s a story about one of my grandmother’s brothers joining the mafia and getting shot at, that is just absurd. It’s these tales that I know can’t be true, which came to influence my view on reality.
Ross:	I’d like to ask you more about your family history. I’m particularly interested in your grandmother and the stolen generation, and its effect on her, your mother and then yourself. How much do you think that history — the history of the stolen generation in Australia — has had an impact on you all?
Mary:	Oh, massively. I think my family wander around believing they are in an unsafe world where they don’t fit in. I remember from a very young age that if I took a day off school, my mum would look out the windows at every car that drove by. If any of them slowed down she’d panic, believing that it was child welfare coming to investigate my absence and take me away.
	And I remember so many other odd moments that showed her fear of me being taken. One of the strangest, weird experiences of my youth occurred when I was five or six years of age. It was a period in which dad was fighting to see me more. I remember the scene very well. Mum and dad were fighting, and he called the sheriff. It was this massive emergency situation for my grandmother because she was convinced that the police were coming to get me. I remember her grabbing my mum and I and sneaking us out the back of the house. She took us next door and put us in the neighbour’s cupboard. We hid there for an hour because of the terror of them taking me away. It was absurd. It makes no sense. But I distinctly remember that image and my mum holding me in the cupboard and being terrified.
Ross:	You being terrified?
Mary:	I think so. Now I’m not sure. When I look back at my memory I’m amused and I keep thinking that my family were all crazy. But I think that’s because of how I see it now. I remember my mum being distinctly terrified, and me looking up at her face and watching her.
Ross:	That’s awful. Your mother was obviously a very anxious woman, which is understandable given her experiences and her psychotic illness. Is there any other history of mental illness in your family that you haven’t mentioned?
Mary:	Oh yeah, a lot. Perhaps most importantly, I had a cousin with the same problems that I later developed. It was my earliest experience with someone truly like me. She had agoraphobia, OCD and severe anxiety and was in and out of mental hospitals her whole life. It terrified my mother because she was always scared of the system — of going into the system because the system is where you just go to die. Hospitals are where you go to die. Mental hospitals. But my cousin Suzanne didn’t quite have that fear. She saw hospitals as safe places I think. She eventually died quite young too. She died in her forties. How it happened was never discussed.
	That was one of my first experiences of true traumatic death of someone close. I was only 17. Because I’d always linked myself to her, her dying was fairly significant to me. She suffered the fear of death so prevalently, and then she died Ross! (Mary stared straight at me with an expression of disbelief). I never found out if she killed herself or not.
Ross:	I see.
Mary:	A few of my aunts have attempted suicide. There’s also a lot of addiction in my family — from alcohol to ice. Several cousins have bipolar, and phobias seem very common in the family.
Ross:	So there’s really a very broad range of fears, phobias, anxiety, substance issues, and significant mental health disorders — bipolar and psychosis.
Mary:	Yes. My family is riddled with mental health problems.
Ross:	I want to turn away from your family now, if that’s okay, and move the focus to you. What are your earliest memories of your own anxiety? The earliest memories you have of being fearful, worried, or afraid?
Mary:	I think they start in Darwin. When I was four or five, it was after my mum took me. We went to Darwin to find my dad because he’d gone there with some idea of joining the army. I also had an aunt who lived in Darwin. As I’ve said, I was already rattled about leaving my nan. I was scared that she was going to die when we first left home. But in Darwin, traumatic things kept occurring that still come into my mind.
	I remember a terrible incident when we were driving in Darwin. We came upon a dead man — he was just lying there on the side of the road. We slowed down and I could see him clearly. It was terrifying. Then a man came and knocked on the window of our car. He wanted my mum to call for an ambulance. My mum freaked out and got really scared. She wouldn’t do it, ‘No, no, no, I have my little girl in the car’. She just drove off. She didn’t want to be part of the situation. I remember being torn — I wanted to get away as well, but I was overwhelmingly sad at the same time.
	Dramas seemed to follow us in Darwin. We were broken into while we were inside the house. I remember being scared, but my mum was terrified. Her mental health was always delicate. She could have short psychotic episodes when things were too stressful. I remember her breaking down after an indigenous man, speaking a native language, was screaming at a shop owner. I don’t remember the scene being extreme, but my mum got me and stuffed me in the footwell of the car.
Ross:	Oh dear. Each of these events would have been quite traumatic. I’m not surprised you remember being very anxious and fearful. But what about the first things you came to fear in an ongoing way? What were the earliest stimuli that had you afraid on a regular basis? The first fear objects or fear situations in your life?
Mary:	I remember being terrified of the toilet at around this time. I was afraid of being pulled into the toilet and of falling into the toilet. But mainly it was a fear of an arm rising up from the toilet and pulling me in. I wouldn’t go to the toilet by myself. I’d always ask my mum to take me to the toilet.
Ross:	At home as well as out?
Mary:	Everywhere.
Ross:	I see.
Mary:	I just wouldn’t go by myself. The toilet scared me a lot. I wouldn’t sleep by myself either. I remember being afraid of something getting me from under the bed or from the cupboards. And I was afraid of water. I was scared of something, like a shark, coming from the bottom of the pool and dragging me down. And at around the same time, I developed a fear of being kidnapped or taken away. These were the earliest fears.
Ross:	How did those early fears progress over time? Did they fade one by one? Did one of them become dominant? Did they all die out? What happened over the early years with those specific fears?
Mary:	I think they changed, but some are still with me in an altered way.
Ross:	Okay.
Mary:	The toilet one, for example, later became a focus for my OCD. I had very strong obsessions and compulsions about the toilet.
Ross:	Tell me about that?
Mary:	I couldn’t lift the lid, flush the toilet, wash my hands, and wipe. If I did all four of those things, I would die. I had to skip at least one step. And I couldn’t sit on the toilet on an angle. I had to be perfectly straight. If I sat sideways I would die. I also had to go to the toilet a lot. I was scared that my bladder would explode and that I would die, so I had to go to the toilet a lot.
Ross:	When did this all stop?
Mary:	Occasionally I still worry about these things.
Ross:	Right.
Mary:	Just every now and then. Sometimes, if it’s really late at night, I’m still cautious about going to the bathroom.
Ross:	The other fears — like sleeping on your own — when did they pass?
Mary:	Sleeping on my own wasn’t possible until about 13. Checking under the bed? Well, I’m still working on that. (Mary smiled).
Ross:	You still worry about something getting you in the night?
Mary:	Sometimes, I’ll deliberately kick my foot under the bed for a few minutes. Same with checking the cupboard.
Ross:	So some of the remnants of your first fears are still here.
Mary:	Yes. They just change. They adapt to my logic and my reasoning. They try to find a way to survive despite my thinking maturing.
Ross:	Okay. If I’m hearing you right, you might still fear being alone in bed, but it won’t be so magical? It mightn’t be due to monsters in the cupboard, but fear of an intruder or something like that?
Mary:	Yes. It could be that. Or it could be due to a health fear. What if I have a stroke or aneurysm in the night and I’m alone? I still have some sensible caution in deep water, although I’m not expecting sharks in pools! But there are still magical aspects to some of the fears, like checking for things under the bed.
Ross:	So the fear stimulus has remained, but the outcome you fear may have changed?
Mary:	It does fluctuate, yeah.
Ross:	That’s very interesting. Tell me, what other things have you feared? What have been the dominant fears in your life? The worst things from your point of view that have caused you problems?
Mary:	A lot of food-related fear about anaphylaxis and choking and contamination and poisoning.
Ross:	Certainly, when I met you, these fears were far and away the most significant part of your suffering. Do you think they’ve been the most disabling set of fears you’ve ever had?
Mary:	Perhaps, although the fears of things I had no control over may have been worse. Of course, they’re just different aspects of the same thing — a fear of sudden death. But the ones that I had no control over — so the aneurysms, the strokes, not being able to breathe — were so disabling. In the end, I just said to myself that if I didn’t leave the house it wouldn’t happen. I also remember thinking that if I did have an aneurysm I’d rather it be at home. On the other hand, I could do something about the food things. I could only eat completely safe foods, and only eat in completely safe places, like accident and emergency departments at hospitals.
Ross:	Right. So it was the fear of sudden medical mishaps that led to the agoraphobic avoidance.
Mary:	Yes. But you know what’s weird? I had a period in my life, from about 13 to 15 years of age, where I’d say I had no fear at all — where it all completely went away. I don’t remember suffering any fear during that period of time. I caught a plane by myself. I walked everywhere by myself. I slept in my own bed. I was totally self-sufficient and functioning very well.
Ross:	Was there anything about that period that you can put it down to? Was there anything in your life at that time that was fundamentally different to the period before it or after it?
Mary:	I think for the first time in my life, I had a purpose. I had a job at 13 and felt real purpose. School had never given me purpose. I always hated school. It made me anxious — I had a lot of panic attacks and fears at school. I remember one of my earliest fears, which I still have now and again, was of meningococcal meningitis. There was an outbreak when I was about 12. I remember I had a diary that I used to write in because I was so terrified of getting it. My parents gave me a phone when I was about eight years old because I’d have anxiety attacks and I’d just call them from the school bathrooms.
Ross:	So at 13, you got a job.
Mary:	Yes, at Domino’s. And I felt a purpose for the first time.
Ross:	Suddenly you were doing something that felt meaningful, and your fears left for several years.
Mary:	That’s right.
Ross:	You were working in that job across that whole period?
Mary:	Yes.
Ross:	And then your fears returned. When and how?
Mary:	I don’t know exactly, although I have some ideas. Things had been going so well. I was working and I’d discovered boys. I was dating, and at 15 I had a boyfriend and was staying at his house a lot. He would go to work and I’d be by myself a lot. But I was very relaxed. I was not afraid at all. But then … I don’t know … I had a situation where I was coerced into sexual activity with a man who was much older than I was. It was straight after that my fears returned, although I’ve never believed that it was the sexual encounter itself that caused it. I think it had more to do with feeling let down by people around me. You see, I told everyone what had happened and they made it sound like I just wanted attention and that I’d wanted to have sex with this older man. Everyone I’d trusted turned against me. So maybe that was it. Soon after that, I remember getting the thought ‘I have a brain tumour.’
Ross:	I see. So suddenly you had a brain tumour thought and …
Mary:	It just overtook everything.
Ross:	… the anxiety’s back.
Mary:	Everything came back. Yes.
Ross:	I see. In the midst of everyone letting you down.
Mary:	That’s right.
Ross:	People that you trusted and believed in. And you would’ve been quite surprised, I imagine, that these people that had been in your trust network suddenly abandoned you. So perhaps, again, you came to believe that the world was a more dangerous place than you had realised. People that were meant to be relied on weren’t there for you. Have there been any other happenings in your life that you think intensified your fears? It could include bullying or actual illness or accidents. Is there anything else you haven’t mentioned that happened to you that clearly occasioned an increase in the intensity of the fears? Anything else?
Mary:	I suffered severe bullying all through school because I was a weirdo. I am a weirdo. I remember I had an argument with my teacher when I was 12 years old because I said that there were no differences between girls and boys and that little boys were allowed to play with Barbie dolls. Everyone just thought I was odd. I liked poetry, and I liked witchcraft, and I liked exploring things, and so kids didn’t like me. I didn’t fit in.
Ross:	Okay. So bullying may have played a role?
Mary:	Maybe. But I don’t think it did. It was fairly traumatic though. I was always excluded and sometimes it got fairly violent and volatile. It got exceedingly worse as I got older. During puberty, when I was around 13 or 14, the violence increased because a lot of the older girls saw me as a threat to their boyfriend. But that never seemed to phase me — I always thought there were more important things like purpose and death, so everything else was kind of irrelevant.
Ross:	Okay. Mary, I’d like to change topics again. How did you first come to treatment? Tell me about your first experience of treatment?
Mary:	Well, I can tell you when I first got properly diagnosed. I was about 15 and I had the thought that I had a brain tumour. I flew to Melbourne to see a specialist. I flew down by myself and was feeling okay. But when I got there I swallowed a fingernail and it terrified me. You see, when I was six years old I ate some popcorn and nearly choked on it. It got lodged in my throat and my throat swelled up. I lived on fluid for a week because of my swollen throat. It hurt when I ate and I was scared I’d choke on solid food. So here I was at 15 and I swallowed a fingernail and I was scared that the same thing would happen. I was terrified that my throat would swell, so I wouldn’t eat solids for weeks. I was terrified that I’d choke and die.
Ross:	Sorry to cut across you, Mary, but that happening with the popcorn at six is very interesting because so many of the fears in later life have been around choking.
Mary:	My family’s fixated on choking.
Ross:	I see.
Mary:	Like you don’t eat that, don’t run with that. You’ll choke. Sit down. Choking is a big thing in my family.
Ross:	You heard a lot of that talk as you grew up.
Mary:	Oh, yes. Constantly. Everything was a choking hazard.
Ross:	I see. Let’s get back to Melbourne. You swallowed a fingernail and became terrified about choking. Did that bring you into treatment with a psychologist or a psychiatrist?
Mary:	No, but it was how I first got diagnosed. You see, I wouldn’t eat at all. I ended up quite disoriented and had a massive panic attack — one of the biggest attacks I’ve ever had. The ambulance came. I went into hospital. I was quite weak because I hadn’t eaten in weeks. The only thing I’d had was fluids like Sustagen. The doctor in emergency diagnosed me with panic disorder and told me I needed to see someone.
	But my family don’t like dealing with psychologists and psychiatrists, and so they didn’t really encourage me to see one. So I went back home and I stayed in Dubbo, moving back in with my dad and my mum. We all lived together again. My boyfriend at the time came and lived with us as well.
	It’s at this time that I became agoraphobic. All my friends were still at school. I wasn’t because I’d dropped out. I was painting. And I was smoking a lot. I was smoking and painting, and I wouldn’t leave the house. At times I tried, but things seemed to go badly. I tried to get my driver’s license. I thought that would help. I got my learner’s permit and started to drive in my street. I knew I had to go further, so one day I tried to drive to the local shops to get a chocolate milk. But on the way there a car crashed into the back of us.
Ross:	How old were you?
Mary:	I was 16. It was just after I came back from Melbourne. It was like a three-car pile-up, and we were at the front. I got out and I had a massive panic attack. The ambulance came and they suggested I follow up with the GP immediately. I really couldn’t calm down. When I got to the GP, I was freaking out. He was really kind and very caring. He became my primary source of help. He was at the Indigenous Medical Centre. He was the one who put me on the path to seeing a psychologist.
Ross:	I see.
Mary:	The first psychologist was awful — just awful. She kept calling me Emily. She wasn’t helpful. She gave me her mobile number and she told me to use paper bags for hyperventilating because I was hyperventilating a lot at that point. I didn’t really know how to stop the sensations. I left her after three months.
Ross:	Did you move on to another psychologist?
Mary:	I saw many over the years because I moved around so much. We didn’t stay in Dubbo for very long. My life was very unstable. I moved from Dubbo to Brisbane, Darwin, Port Brisbane, Melbourne, back to Dubbo, and Sydney.
Ross:	A lot of movement. And did you engage with different therapists in each of those places?
Mary:	Yes, I’ve seen a lot of psychologists. I would say … six or so that I can distinctly think of, but there would be more. There were many that I saw for just a few sessions because they weren’t helpful. Some of them caused me harm! I remember one psychologist told me that ‘There’s people who think that they’re having a heart attack so much that it actually happens.’
Ross:	Right. He actually heightened your fears! Is it fair to say that you found psychological and psychiatric care over the years to be inconsistent in quality?
Mary:	Because I was so poor — my family had no money — I couldn’t afford to see private practitioners when I was young. And once the agoraphobia began I couldn’t get to a lot of services anyway. I relied on the GP at the Aboriginal Medical Service — he helped me a little bit. He tried to get me involved in online programs which was a good thing.
	Also, we moved to Brisbane, and then my anxiety improved a little. I went on medication at that point, and I think that did help me.
Ross:	Medication has played a useful role?
Mary:	I felt like it helped me function in short-term bursts, but that was it. I don’t think it necessarily helped with therapy. On medication I could do stuff, but it wasn’t actually progressing anywhere if that makes sense.
Ross:	Yes, I see what you mean. In all the therapy that you’ve had, and you’ve had a lot with various people, what do you think have been the most effective components? What procedures or tasks have most moved you forward?
Mary:	To be honest, for me, the very first thing was talking to someone who wasn’t an idiot.
Ross:	Right.
Mary:	It was so important to talk to someone who understood what they were talking about. Mostly I’ve felt that mental health professionals didn’t actually understand what was going on with me at all. And then they’d fumble around and try to get me to do exposure and it was all too extreme. It was all too traumatising.
Ross:	I see.
Mary:	I did learn about breathing from some early psychologists. And about not fearing sensations — learning the difference between sensations and symptoms. I think all of this was really helpful for my panic disorder because it meant that when I had a panic attack I could control my symptoms. One psychologist got me to deliberately hyperventilate through a straw and spin around so that I got used to bodily sensations. That was helpful.
Ross:	Getting exposed to the interoceptive cues — the body cues — and realising that nothing bad happened when you had those sensations.
Mary:	Yes. Yes. I did find that useful. But none of that really helped my OCD, which I have always seen as the biggest problem. Before you, no one really helped with the OCD or understood it even, I think. They didn’t seem to understand how to use exposure to get me to confront my fears. I remember one psychologist saying ‘your fear is death, and I can’t expose you to death, so I can’t use behaviour therapy’. I was shocked. Too few professionals seem to understand OCD.
Ross:	That’s really interesting. You met with a lot of people who didn’t seem to understand the problems you had and were, in your view, fumbling around a little.
Mary:	You know what? I also think that a lot of professionals that I worked with had their own death fears. I think this is a big issue — I think it’s another reason people avoid working directly on the death fears of their patients. I realised that I was dealing with fearful human beings trying to tell me not to be fearful. I thought, ‘How is that helpful?’
Ross:	I understand why that would make it hard to listen, and perhaps to trust. Yes, that makes a lot of sense. Mary, I’d like to change topics again and ask you about your feelings toward death. When you think about death, what emotions arise in you? What emotions arise in you at the thought of your own death?
Mary:	Sadness. Just sadness. No (Mary paused), maybe angry as well. (Mary paused again). I don’t know. All of the negative emotions. (Mary paused again). I think about the experience of death and the realisation that I’m dying and leaving people I love. And then I think about death on a spiritual level — of the universality of it all and what might happen afterwards, which makes me angry.
Ross:	In what way?
Mary:	Like, why the fuck? Like, for what point did any of this happen? Like, if we are some kind of spiritual being in the universe, why do we exist? Like, what? I just want some kind of answer, I guess. I feel like maybe that’s in death, but I don’t want to die.
Ross:	What do you think will happen to you as you physically die, and once you’re physically dead?
Mary:	I don’t know. I think death itself … It’s interesting because the way I picture it is absurd and isn’t how it’s going to happen, which is like the realisation of death, like the thoughts of knowing you’re dying. But that’s not how shit happens. It just fucking happens and then you’re dead. I often think about it in slow motion. I see myself from the outside — closing my eyes and seeing my partner Michael for the last time or realising that it’s all done. And then I believe that you probably wake up and do it all over again. I don’t know. I think I don’t tend to believe that this is it. So I do have some kind of sense of continuity.
Ross:	Expecting something beyond this?
Mary:	Not necessarily in consciousness. Maybe I mean a sense of the connectivity of the world — an experience of your consciousness dissipating and you no longer feel like you’re an individual, you feel peace with everything and everything that exists. Maybe that sense of oneness.
Ross:	I think I understand. Do you expect some ongoing sensory experience? Some ongoing awareness?
Mary:	I think so. But I also have a fear of that change of awareness, rather than there just being nothing.
Ross:	Can I ask you what relationship you see between fears of death across your life and your experience of everyday living? Is it an extremely tight relationship? Has fear of death been the ultimate driver of most of your 25 years of living? Or has it been a smaller part of your life?
Mary:	I think my relationship with fear of death has changed in the last few years — since beginning treatment with you, Ross, and also in finding more of a purpose. But before that, it was my world. Everything was about distracting myself from death, staying safe from death, and avoiding it, avoiding even saying the word ‘death’. Everything was about closing the blinkers and not focusing on it, or alternatively, obsessively thinking about it. I spent years obsessively thinking about death and exploring it thoroughly and then trying to avoid it altogether in any way that I possibly could.
Ross:	So once it was your world, but these days it’s not as dominant. You said that since entering an effective therapeutic relationship, things have changed. But you said that finding more purpose has helped you. That’s very interesting because you mentioned feeling purposeful in the teenage years in which you were free of anxiety. Can you tell me more about what makes life purposeful or meaningful right now?
Mary:	Multiple things. I have an increased sense of the possibility of leaving a legacy, I think. The idea of working towards something for life to be meaningful resonates with me right now. But I also get meaning and purpose by genuinely enjoying what I’m doing — enjoying life and the experiences around me.
	These days I also believe that even negative experiences are worthwhile — they are still experiences. I’m caring less about survival. I’m less insular and less protective of myself — I’m caring more about others. I’m trying to focus on others and that definitely helps. The more I think of others; the less death seems to worry me. I have always thought that I would find the answer to life in other people. That has been a recurring thought of mine, and something that I tried to seek out at various points in my life. I have always sought out people who I could respect or admire or look up to — people I could learn from. Now that I’m doing so much more in my life, I feel like I’m surrounded by a lot of people with unique perspectives. I feel that I have a lot more people to get answers from.
Ross:	You have only a few remaining fears. You’ve beaten most of your specific fears in recent years. The fears that remain — fears of planes, elevators, restricted egress, not being able to get out of some places — do you see them as an echo of your dread of death? They seem to still relate to the possibility of harm. Is that how you see them?
Mary:	In part, but it has a lot to do with just being uncomfortable in those situations.
Ross:	Okay.
Mary:	I feel like I don’t want to be in a situation where I’ll feel discomfort for any length of time. I feel like my fear of death is somewhat separate from these current fears.
Ross:	So do you feel then that you’re finally winning your battle with your fear of death? Do you think you’re finally conquering it?
Mary:	Yes and no. Before, I was running away from it, and now I feel like I’m sitting at the dinner table with death. And I can look at him and I’m suspicious, but I’m also curious and somewhat comfortable. Every now and again, I get the impulse to run away. I don’t feel like death and I are best friends. But I’m not terrified of him anymore. I’m cautious of him, but I’m moving toward acceptance.
Ross:	That’s a great place to finish, I think. Thank you very much Mary.