NOT YOUR AVERAGE PATIENT

In 2008 I wrote a series of feature articles on Hospital Emergency Departments as part of my Masters in Journalism studies. This is Lucy Henry’s story, as a frequent flyer in the ED.

It is not every day you meet a woman with no ears and half a nose.

Lucy Henry is not an average patient in the Emergency Department [ED], with her prominent scars from self-inflicted burns. She is one of the forty thousand patients that present at the Royal Hobart Hospital emergency department each year. This 35-year-old blonde is confident and comfortable in herself, despite the life-altering events of the past 13 years. As she relaxes on her sofa, with devoted dalmatian Lottie nearby, she speaks frankly about her experiences as a self-confessed “frequent flyer” in the emergency department. Her first and only childhood experience of the emergency room is largely a blur, but for one memory – a piercingly clear vision of a woman in an adjacent cubicle having a vaginal examination.

“I can just see this woman with her legs spread and everything on display, and they quickly shut the door. It’s been an everlasting memory. I think I’ll remember that for the rest of my life.”

While riding her push-bike, eight-year-old Lucy fell and broke her leg. “Being a child they were all very nice to me… It’s funny, the biggest memory that I have of going into A&E is the light – because they have the lights on all the time. It’s like being in Guantanamo Bay or something,” she says.

The memory of a strange woman’s intimate moment didn’t deter Lucy from her ambition to enter into nursing. She graduated as an enrolled nurse in 1994. Not one to sit on her laurels, Lucy also hoped to study medicine but life had other plans for her. Like almost twenty per cent of the adult Australian population – more than two million people – Lucy was developing a serious mental health problem – Borderline Personality Disorder (BPD).

“I’d gotten into medicine as a mature age student and – it was weird, I didn’t understand what was going on. I was studying during the week and every weekend I’d either take an overdose or cut or something. They were only small overdoses – I didn’t really know what I was trying to do. I didn’t have much insight or understanding; I was just acting on impulse.

Borderline Personality Disorder affects around 300,000 people in Australia and around two-thirds of them are women. According to SANE Australia, the disorder is characterised by a lack of impulse control, intense insecurity, a sense of confusion and contradictory feelings, and episodes of self harm.

Lucy was resistant to being diagnosed with a mental health problem. “Borderline Personality Disorder is not a nice label to carry around. It’s got a lot of stigma with it and you get treated differently. A lot of people see you as an attention seeker and time waster and find it hard to understand self harm and why you would do that.”

While working at Calvary Hospital at the age of 22, Lucy experienced her first major episode. She slashed her wrists badly then presented to the Royal Hobart Hospital Emergency Department. Conscious of the stigma attached to mental health issues, and in particular to BPD, she refused a psychiatric consult while still at the emergency room. As Lucy was working at this time she was embarrassed by the whole situation. She remembers however, the nursing staff were kind and compassionate and kept her boyfriend – an ED doctor – away at her request.

“They say that on the whole people with Borderline Personality Disorder self harm as a way of tension release but it hasn’t been so much like that for me. It’s been more a way of me showing people how I feel on the inside, on the outside. I felt so horrendous and no-one’s been able to see it but if I cut myself or injure myself or take an overdose, people can see ‘oh she must be feeling really bad to do that’.”

Lucy’s nursing background, and her ‘frequent-flyer status’, taught her to communicate effectively with medical personnel. Becoming knowledgeable about your own health and available treatments is definitely a plus. As Lucy vividly recalls one of her most unpleasant experiences at the ED, it is clear experience is a great teacher.

I’d cut all up and down both legs and both arms so they couldn’t stitch me up with local anaesthetic. [Too much local anaesthetic adversely affects heart rhythm.] Rather than take me to theatre and give me a general anaesthetic, they came and said ‘we’re going to staple you up’ and they did it with no anaesthetic. No pain relief – nothing. It was horrendous. They didn’t take me into the theatre unit where they usually do, they just stitched me up there in the cubicle. I don’t remember the pain, I just know it was horrendous. The stapler they use to staple you up, it isn’t that much different to your general, every day stapler.

This has happened on numerous occasions for Lucy. When asked how the pain of this procedure differed from her own episodes of self-harm, she says, “A lot of the time when you cut, you’re in a dissociative state so you don’t necessarily feel it as much.” Medical personnel dealing with Lucy on a nearly weekly basis over the past 13 years describe feelings of intense frustration. Lucy thinks the procedure was done this way because she’d been at the ED so frequently, with so many self inflicted wounds, the hospital didn’t want to waste valuable resources on someone who could presumably tolerate the pain anyway. “I guess they felt if I’d done the cuts myself I could bear the pain and also I think they felt it would be a deterrent. But all that happened was I got to the point where I stood up for myself and I said either you give me a general anaesthetic or I’m walking out of here right now.”

Most of us will never experience anything so distressing. For many the greatest complaint at the emergency room is the waiting time. In 2008 we’ve come to expect instant responses to most of our requests in life and waiting up to eight hours in an emergency department – at a time when many people are fragile and vulnerable – can be distressing. Lucy has a simple solution: “Always take a good book with you when you’re going into the Royal.”

Lucy is really quick to point out that while some of her experiences are not so positive, that is not how she feels about the emergency health services at all. “I know a lot of what I said has been negative, but that’s not fair to the people that work there. I have also been shown a lot of compassion. Like last time I went in, there was a paramedic and I had my dog with me and she came ‘round to where you wait and sat down with me. I was quite distressed, not wanting to be treated badly.”

Lucy’s deformed lips struggle to inhale her cigarette as she continues, “I was talking to her about it. She has diabetes and she said, ‘look you can’t help it any more than I can help my diabetes.’ She stayed with me until I went through and they were all very compassionate and very kind. I know there’s been times when I’ve harmed myself and I wouldn’t have expected them to have gone to the measures they went to, to keep me alive, but I’m glad they did.”

Anyone can have a life-altering moment in a heartbeat. For Lucy, this moment came in 2003. She was 29 and living with her parents, no longer able to cope alone due to intense periods of self harm. On a clear, warm January evening, Lucy finished dinner with her parents then went outside, grabbed a tin of kerosene, poured it over her head and set herself on fire.

“It just got to the extent that whenever I heard of a new way of self-harming I thought ‘oh let’s give that a try.’ I just had lost all impulse control. I had no thought of what the consequences of my actions would be. It wasn’t that I was trying to kill myself. I didn’t know what the results or consequence would be. I just didn’t think about that,” she says.

As she describes the unfolding of the events, it’s almost comical – like Kenny from South Park experiencing one of his weekly deaths. “Mum and dad saw me going across the kitchen window on fire. I went out to the lawn and I can’t remember it actually hurting, I’d gone into shock. My hair had just caught when dad got the water on me.”

It’s hard to picture the horror and panic Lucy’s parents must have experienced.

“I tried to roll. I can remember heat but not pain. There was a lot of pain afterwards but not at the time. Dad got the hose then I started to get a bit foggy after that. Mum [a nurse] was taking my clothes off so they wouldn’t stick. I got very cold because basically I had no skin left so there was nothing to keep the heat in. Mum got a sheet to keep the heat in.”

Lucy was still upbeat and cracking jokes as the ambulance arrived at their Sandy Bay home about ten minutes later. “They brought the stretcher in and I got myself on the stretcher. They wanted to get a vein for IV access and I basically said ‘oh good luck’ because I’ve always had very bad IV access – I’ve got very deep veins. “

Lucy remembers little else but is intensely grateful to the emergency service personnel – ambulance officers, nurses and doctors – for their efforts to keep her alive. “It’s a positive experience in that they did everything they could to save me. I’m grateful. I only had a ten per cent chance of surviving. They did a good job. They told mum and dad that I would die.”

“Because I’d put the lighter to myself down here,” Lucy explains, pointing to her navel, “all the front of me was badly burnt. I had very bad inhalation burns – I was just looking down and breathing in these hot fumes. I’m very lucky because a lot of people with my sort of burns lose their hair and have to wear a wig or something. I lost my ears though – both ears are gone. And the end of my nose. I was also very fortunate that only the back of my hands was burnt and I’ve still got the touch sensation on the front part of my hands. And also very fortunate not to lose fingers because people often lose fingers. I haven’t got full range of arm motion, my arms are quite limited … this shoulder’s fused basically,” she says, indicating her right shoulder.

Setting yourself on fire is an extraordinary event. “I regret it very much,” she says. “Except that I’ve learnt a lot through it – about consequences. I wish that I could have learnt that without having ended up being disabled to the extent that I am and with the disfigurement that I’ve got. But if it hadn’t have happened maybe I wouldn’t have got Lottie and this flat. I love this flat. I love this location. A lot of things have led on from that. I would prefer to have not gone that way but there have been positives. Positives and negatives. There’s always a lesson to be learned.”

For Lucy, life goes on. While her nursing career is behind her, she has developed a passion for writing. She’s started collating her experiences of the past 13 years and hopes to return to university to study journalism and writing. She is President of the Aware Dogs Tasmania association and is currently building a small business in public speaking.

Lucy’s also taken up singing – something long forgotten from her days as a schoolgirl at Collegiate. A member of the newly formed Choir of High Hopes in Hobart, Lucy is featuring as a soloist on their first recording. Her ears may be gone, but her voice can now be heard by all.