phoebe’s story (or 100 reasons why you should never complain again)

I have been having trouble devising an opening for this story.

It is one of a long list of frustrations I’ve faced this morning: my coffee was too hot, my head hurts from last night’s excessive alcohol consumption, I can’t find my shoes and I don’t have anything to wear tonight. I especially do not have the time to wash my hair. These are the trials I must face, and they vary from day-to-day.

I will complain about these to any who will listen.

In Brisbane, 30-year-old Phoebe Young faces her own list of daily frustrations: her prosthetic limbs (both legs and her left hand) are at times a burden. She has grown accustomed to waking up and putting them on first thing in the morning – for her this is now second nature – but the pressure and friction against her skin occasionally causes her extreme discomfort. They also hinder her, sometimes, from frivolous meets with friends and spontaneous nights on the town. Not always, but sometimes. Her vision is very poor, and it is not unlikely that she will face an eye infection today. For Phoebe, these obstacles do not vary. They are constants, just as it is a constant that I will open my eyes each morning, and I will see.

Unlike me, she will not complain.

Sitting across from Phoebe, she appears to me to be your everyday woman. Nay, she is the type of girl that most of us wish to be: slender and long-legged with auburn hair and a pretty smile, she is charismatic, quick-witted and chipper. It is near impossible to detect that this person once lay comatose for over five weeks, enduring a list of operations so comprehensive that even she cannot name them all, operations that culminated in the loss of her hair, extensive skin grafts, the removal of her left hand at the wrist, as well as both of her legs below the knees. All of which transpired before Phoebe’s19th birthday.

For her first 18 years, Phoebe’s life followed a fairly conventional trajectory: the youngest of three children, she lead a happy childhood in North Queensland. She was a student at St Margaret’s Anglican Girls School in Brisbane, where in grade twelve she was voted Boarder Captain – a prestigious title for any who have attended similar schools – by her teachers and peers. Phoebe, who is known affectionately as “Phoebs” by her friends and family, had a great love for her school, but was not overly interested in studying.

“After school I took a gap year and lived in the UK,” she told me. “I nannied in Madrid for a few months and took a trip around Europe before returning to Brisbane to start uni. I commenced a Bachelor of Arts at the University of Queensland and was at college. Again, I was more interested in the fun of college than hitting the books.”

It was here, at The Women’s College, that my older sister Carly Nyst met Phoebe. They formed a fast friendship, and I recall meeting Phoebe, her long, curly auburn hair and her big smile, when visiting Carly at Women’s College in early 2001. But more than that, I remember what happened to her only a few short months into their friendship.

It began with a frighteningly swift decline in Phoebe’s health, which Carly recounted to me in a recent interview.

“It was the end of our first semester of first year university… it was SWOTVAC, but as usual we were doing everything we could to avoid studying. We went out on the Friday night and on Saturday Phoebs woke up feeling under the weather. Over the weekend, she deteriorated significantly, and also began to develop a rash on her chest and upper arms. By Monday morning, we knew something was wrong, so Phoebs and I went to Taringa Medical Centre to have her seen by a doctor.”

It was a public holiday that day, so Phoebe was told that her blood test results would take longer than usual to come back to her. She was sent home to Women’s College with some medications and instructions to rest. Her parents lived in the United Kingdom at the time, her older sister Alex in Weipa and brother Campbell in Sydney.

“The GP wasn’t sure whether I had Ross River Fever or Glandular Fever or what but I was put on antibiotics and within a couple of days I was in Intensive Care in a coma. My memory of the lead up to hospital is very patchy and I get the heebee jeebees thinking about that time. However I know within about 24 hours my parents were told to fly to Brisbane ASAP to say goodbye to me,” Phoebe reminisced.

Carly’s memory of this time is much clearer. She went to work at her casual job at Starbucks in Brisbane city, and when she arrived home at 7pm that night, it was clear that Phoebe needed to be taken to hospital. A group of girls all but had to carry her to the car, and on the journey, she began to vomit blood. They took her to the Royal Brisbane Hospital, not knowing that it would become Phoebe’s home for the next six months. That night, her family was contacted, and Campbell hopped on the next plane.

A group of friends visited the infectious diseases ward where Phoebe was placed the next day.

“When we walked into her room, she didn’t register that we were there at all,” said Carly. “She was on a lot of morphine because her body temperature was so high, and she seemed almost delirious. It upset us all quite a lot – it was like she didn’t recognise us… That was the last time I saw Phoebs for about two months.”

Although her original ailments were never diagnosed, the months of trauma that followed were the result of a catastrophic reaction to penicillin known as Stevens Johnson Syndrome (SJS). This rare, life-threatening syndrome occurs when the skin and mucous membranes react severely to medication or infection. What ensues is the burning and blistering of the skin, which dies and sheds.

“I was in a coma for approximately five weeks and began to turn septic,” Phoebe described . “My hands and feet basically died and turned black and the only way to save me was to amputate. My skin and eyes and mouth and lungs burnt and blistered from the SJS and my hair fell out from the stress. Once I had the amputations I turned a corner and was taken out of ICU, I stayed on a ward for another four months. I was so, so, so weak… I was red raw all over and just so skinny, I couldn’t even lift my head from the pillow.”

In addition to the aforementioned procedures, Phoebe had the tips of her fingers on her right hand amputated, and her eyelids sewn shut to assist with the scarring of her corneas. She was not conscious when the decision was made to amputate her legs – a last ditch attempt to quell the disease and save her life – but does recall having recurring nightmares during her coma: being trapped, being on fire and bleeding to death.

“I was still very out to it in the coma and on a lot of medication so it was just like all the other nightmares I was having. I was not a conscious healthy person being told I was going to lose my limbs; it was more of a protracted and unclear experience than that. Even waking up was sort of a haze and it all happened very slowly.”

For those friends and family who were conscious, the time was all too real.

“Each day, I would call her parents and Campbell to check in. Each day, the prognosis got worse,” Carly recalled. “The decision to amputate was gradual. I remember how devastated I was when they first suggested that they might have to amputate the heel of one of her feet. At the end, when they told us they would amputate both legs and her left hand; well, that was just inconceivable. But throughout the process, it was clear that her chances of survival were slim. So the amputations, in a way, paled in comparison to the thought of losing Phoebs.”

When faced with an individual who has endured something so unimaginable, there are many questions. Coupled with these questions is the desire to be gentle, to be careful not to dredge up past horrors, and to be respectful. Phoebe does not revisit memories of her illness often; she acknowledges it was terrible, but it has passed. However, she does not shirk from questions that are admittedly close to the bone.

I asked her what it felt like to wake up after having your legs amputated.

“I was definitely scared. I was really, really sad, too, at first. I grieved for the loss of my limbs and cried. But I think I switched into a different mode fairly early on, from victim to survivor. Everyone sort of wants you to be really sad and depressed and “let it out” but that is not a pleasant way to feel,” Phoebe responded.

Everybody who has gone through some form of trauma or tragedy must, at some point, ask themselves, “Why did this happen to me?” I wanted to know how Phoebe reached acceptance of this, to which she replied with unsurprising candor.

“I think these questions are pointless. You just have to move on – sitting in a darkened room feeling sorry for yourself is not enjoyable. I mean no one would want to do that, right? So you just have to focus on what you do have. I kind of hate that saying, “everything happens for a reason”. I think sometimes really terrible things happen for absolutely no rhyme or reason.”

The removal of her legs and her left hand proved to be the turning point for Phoebe, who recuperated in the Intensive Care Unit, learning to use prostheses in a rehabilitation clinic for three months, spending another few as an outpatient, and then returning to her parents’ home in the UK for another year of rehabilitation.

After this, she returned to Brisbane, where she moved into a share house and resumed her Bachelor of Arts degree at UQ.

“The path to recovery was really, really hard. A lot harder than being sick. It is like you claw back in fits and starts,” she told me. “I think you have to just dive in sometimes, though. I moved out of home and lived with mates and returned to uni and started working. Adding more to your plate just makes you rise to the challenge.”

Phoebe went on to study a post-graduate degree in Law, where she excelled and was offered a prestigious judge’s associateship upon graduation with a judge of the Supreme Court, a position that she held for two years. She has spent the last year working at a community legal centre in Perth, offering free legal assistance and working with disadvantaged clients. She feels passionate about social justice causes and derives inspiration from her work.

“I relate to them and I also think I feel so fortunate to have received so much good will in my time that I really enjoy working for the community.”

Phoebe has also worked with the charity Youngcare, which brings attention to the plight of young people living with disabilities. Although she is characteristically self-deprecating about her charity work, it is clear that it is important to her.

“I also often visit new amputees in hospital. It is good to go in and for them to see what an amputee looks like down the track and see that you can be active and happy despite the loss. It also makes me appreciate how far I’ve come.”

In the years following Phoebe’s discharge from hospital, she met and married the love of her life, Ben Young. She credits him as one of her biggest support systems, alongside her friends and family, and there is no doubting that she is happy. Despite the ongoing frustrations that she faces, Phoebe believes she is very lucky.

“There isn’t really anything I can’t do. I think if my 18-year-old self was told you will be married to a lovely and smart and funny boy and working as a lawyer when you are 30 I would have been like “sweet dude”…. Because we all talked like punks back then.”

Behind this story, there is a point; a motivator, a moral, a reason. Phoebe’s story is one that deserves to be heard, and why? Because it is inspirational. It is a testament to the strength of human beings, a touching story of survival against the odds that contains a jolting message to myself, and anyone else who complains about their overly hot coffee: things could be worse.

But Phoebe maintains that words like inspirational and amazing do not apply to her.

“I don’t know why, but I think that word ‘inspirational’ is not really suited to me,” she confided in me.

“It kind of makes me gag. It connotes that I am at a loss or suffering or battling. Usually people say, “I don’t know how you do it” when they say ‘inspirational’. If anyone was put in my shoes they would do the same thing. You just do it. I would rather someone call me kind or cool or smart or giving or funny or good-looking! I feel good when someone I know tells me they are proud of me and proud of my achievements.”

Perhaps, then, the greatest thing we can take from Phoebe is to endure what life will serve us, and to move on. She has chosen not to dwell on her experiences. She has moved on from her story, and now, so will we. I think my sister Carly summed it up best:

“I have learnt from her that some things matter, and some things don’t; whether it be friendships, objects, jobs, arguments, achievements – treasure the important ones, and forget about the rest.”

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7 responses to “phoebe’s story (or 100 reasons why you should never complain again)

  1. Phoebe’s story is about the triumph of the human spirit over the most impossible odds.
    Her decision to know happiness is the real inspiration,

  2. Hi Annabelle, thanks to you for writing this brilliant account of Phoebe’s story….Please pass on my love to her – I am Emma Montague’s mum – I will take this opportunity to pass on your article to my friends to read as they prepare for xmas xx

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