After Near-Death Experience, Young Woman Redefines Her Life Through Belly Dance
What began as a nosebleed marked the beginning of a journey that would take a 27-year-old girl to death's door and back, and toward a life in belly dance. Over $1 million in medical expenses, a three week coma, a life-changing diagnosis that came within hours of doctor's plan to pull the plug on her life support, and a grueling recovery are only part of the story that Nicole has to tell.
At 27, Nicole was a healthy young woman; she lived in Melbourne, Australia, was happily engaged to a wonderful man, Alessandro, and had a large group of family and friends. One morning in February of 2001, she woke up with a nose bleed. As time went on, she developed a cough, which evolved into coughing fits, night sweats, loss of appetite, and weakness; all flu-like symptoms that nine doctors dismissed due to normal lab results.
On New Year's Eve, Nicole's heart began racing so fast she thought it was a heart attack. Worried about her daughter, Nicole's mother drove her back to her house, over 2.5 hours away from where Nicole lived in Melbourne.
One month later, Nicole told her mother, "I can't breathe." Nicole's mother raced her to the local hospital, who were again at a loss to explain what was happening to her, and she was transferred to another hospital 30 minutes away where tests revealed something shocking.
Normal oxygen saturation levels are between 95 percent to 100 percent. Nicole's read 67 percent. A patient with oxygen levels that low should be under respiratory arrest. To rule out a faulty the machine, Nicole was re-tested and this time her oxygen saturation level was 65 percent. At levels that low, the brain is not getting the oxygen it needs to survive and the risk of brain damage is high. Nicole needed to be intubated.
"Next minute I'm being rushed to a large cubicle. There are at least 20 doctors around me – I see one of them talking to my mother in the corner – she's crying and I don't know what's going on. A doctor then said to me, 'Nicole we are going to put a tube down your throat and breath for you so we can give your body a rest.' All I could say was, 'I hope you are putting me to sleep before you do that'. That's all I remember," said Nicole.
While Nicole slept, she made medical history. As her condition deteriorated, the hospital in Shepparton where she was taken could not treat her adequately. She needed to be transported to Melbourne, where specialists could evaluate her unknown illness. Unfortunately, she was on Full Life Support, and unable to be moved as she flatlined every time doctors attempted a transfer.
Getting Nicole to Melbourne required a gutted ambulance to fit all the equipment keeping her alive, equipment too heavy to airlift. In addition to a specially constructed ambulance, her entourage included a support truck, support car and police support. The specialized equipment was not easy to acquire - her hospital had to request the government for the $1 million necessary to attempt the transfer.
"I made medical history that day, I was the 5th person to use it, 2nd to survive and world first for long distance travel," Nicole said. "If I was slightly older than I was, and if I had ever been a smoker they would have declined it – I would have been made comfortable and left to die."
The convoy could drive no faster than walking distance, making the normally 2.5 hour drive stretch to 9 hours. Even with the special equipment, Nicole's family were told Nicole's chances of surviving the trip was 5 percent. She barely beat the odds. On the trip, Nicole's heart stopped beating, but doctors were able to get it pumping again.
She would need still more fight in her once the journey was completed. Every day kept on life support meant a dip in her chances of survival. Doctors struggled to figure out what was shutting down the life systems of this healthy, 27-year-old, bride-to-be. Without a diagnosis, and with Nicole's body becoming increasingly dependent on the artificial aid helping her breath and live, a heart-wrenching decision had to be made.
"My specialists in ICU informed my parents that I had been on life support for far too long with no change, and that soon my body would have no chance of recovery," said Nicole.
The doctors set a limit of 48 hours before they would pull Nicole off life support. Her family and fiance were devastated. The disease killing her still had no name.
With 8 hours left before doctors were schedule to take Nicole off the machines keeping her alive, the lead doctor pulled back Nicole's bed sheets, glanced at her legs, looked at her fiance waiting by her side, and smiled.
Tiny red dots on Nicole's legs were the clue her lead doctor was tirelessly trying to discover. One call into the pharmacy produced medicine that instantly brought Nicole back from the edge of death.
"My doctor said that I wasn't knocking on heavens door, I was kicking it down," said Nicole.
Nicole had a lot to digest. Beyond learning that she was 2.5 hours away from the hospital where she was first placed in a coma, she discovered she had lost weeks while sleeping, had flatlined multiple times, and had suffered complete renal and respiratory failures.
More shocking was the discovery that she still had more treatment to endure. Her diagnosis, Wegener's granulomatosis, meant she had an autoimmune disease she would fight for her entire life. According to the Mayo Clinic, Wegener's granulomatosis "is an uncommon disorder that causes inflammation of your blood vessels, which in turn restricts blood flow to various organs." That explained her low oxygen saturation, and why she needed help breathing. A common progression of the disease affects the lungs, liver and kidneys.
There is no known cause for Wegener's granulomatosis, though caucasians are more likely to have the disease, and a common onset age is 40 years. Early diagnosis is key to a full recovery, but in Nicole's case she had already suffered multiple organ failures, plus an extended period in an induced coma. She had lost nearly all her muscle mass and struggled even when putting on spray deodorant.
More crippling than her non-existent muscle mass was the realization of what her treatment meant. She was placed on high doses of chemotherapy, steroids, blood thinners, oxygen and constant monitoring. She was told she would be infertile, lose her hair, and be prone to osteoporosis. She was warned to avoid extreme sports, extreme temperatures - even the common cold!
"I remember reading my file that had been left at the end of the bed and thinking, "Oh that poor person'," Nicole said. "It was my file."
Nicole remained in the hospital for a long time. She needed constant help with eating, dressing and showering. She had to learn how to walk again. Everything seemed overwhelming. Because of the new medications and lifestyle change, Nicole put on 35 kg (roughly 77 lbs) in three months. She wished she'd never woken up.
"I slipped into a deep depression and felt like someone had stolen the life I was supposed to have," said Nicole.
Then one day, at her fiance's house, his older sister, Ida, mentioned in passing that she had taken up belly dance classes. As Nicole's face lit up into a smile for the first time in nine months, Ida asked if Nicole would like to join her in a class. Nicole quickly said yes.
Nicole's first belly dance class was not her first introduction to the art of Middle Eastern dance. As a young child, her uncle was married to an Egyptian woman who often played the music of her native country when Nicole visited their home.
Nicole's Aunt danced differently than her Australian aunts. Though the term "belly dance" was never used, Nicole loved to shimmy with her Egyptian aunt. Her uncle and aunt divorced when Nicole was six-years-old, and the notes of oriental music were lost in memory.
Stepping into a belly dance class for the first time, Nicole's early passion for the dance came flooding back.
"[My teacher] put on the music and I instantly recognised it from my childhood," Nicole said. "It was like someone switched the life light back on and I was home."
Nicole has now been a belly dancer since 2001. She began performing in 2003, and started teaching in 2007. Recently, she opened up her own belly dance school in Melbourne, Blue Fire Bellydance.
She cites both her first teacher, Vicki Pretorious, as a major inspiration in her belly dance journey, as well as professionals Aziza, Ava Fleming, Nour and Jillina. But professionals aren't the only ones who keep Nicole inspired about the transformation inherent in belly dance.
"My students inspire me too, I love to see the transformation from initial shy student in baggy tracksuits to super glam 2 piece cabaret sets superstar several months later," said Nicole.
The man who was at her side the moment Nicole was diagnosed with Wegener's granulomatosis is now supporting Nicole through another crisis - the way belly dance inevitably takes over the life of one bitten by the shimmy bug.
"Alessandro comes to 95% of my performances and he is super proud of me," Nicole said. "Poor thing is constantly telling me to put away my costumes, props, sequins, sewing stuff and other assorted belly dance related items from all over the house."
The weight Nicole gained as a side effect of the steroids used to treat her illness melted away as she began her journey into belly dance, well, most of it. She now has more difficulty finding a cabaret bra then she would have had prior to gaining the weight.
But even though she lost weight, she has a lot of love for the full-figured dancers out there - her first belly dance performance was when she was at her largest weight, something that made her feel very anxious prior to getting on stage.
"I said to myself either I could hide at the back and pray no one sees me, or I could be proud of what I can do, stand front and center and say, 'Here I am, check out what I can do.' I chose to stand front and center and have never regretted it," said Nicole.
Weight gain wasn't the only side effect that lingered. Nicole is infertile, and she did lose her beautiful hair. Though her hair eventually grew back, it never regained its former volume. Additionally, she did end up needing to replace her right hip bone.
In the end, Nicole feels like everything she went through happened for a reason. Destiny led her to belly dance, albeit through a pretty rocky path, and she's very grateful to have found where she belonged.
"My friend said I must be destined for greatness. I found belly dance and I guess in a way there are elements of greatness; I have performed for thousands of people and taught hundreds of women the joy of belly dance," Nicole said. "Belly dance saved me in a way and makes me incredibly happy."
If you have spoken to a loved one who is in a coma, Nicole would like to add this note:
"I just like to add here for anyone who wonders if you can hear whilst in a coma – the answer is yes – the brain sleeps and wakes as normal. My mother and partner were told to stop saying goodbye to me as my heart rate would rise significantly when they said good bye; they had to say they were getting a coffee and would be back in a minute. So don’t feel silly for talking to people, loved one, heaven forbid should they find themselves in that situation."