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Scarlett's story
Scarlett’s story
“It’s a shock to wake up in the morning and know you’re a different person”
Scarlett Paige light-heartedly says that she’s been two different Scarletts in her life-time: the Scarlett before epilepsy and the Scarlett with epilepsy. Her friends in Tasmania have known her without epilepsy; and her Melbourne friends have known her only with epilepsy. Despite the ups and downs of the past five years, Scarlett remains a positive young adult, focused on achieving her goals and living the best life she can.
Twenty-three year old Scarlett was born and raised in a small country town in Tasmania. She only ever wanted to work with children in childcare, and had big dreams to fulfill. Once she was qualified and experienced, she planned to travel to the United States and work as a nanny.
So Scarlett focused her education on training in childcare. In year 10 she was accepted into Vocational Education Training and excelled as she worked her way through her Certificate levels in childcare. She got her driver’s permit, and after qualifying as a childcare worker was employed in a childcare centre in Hobart. All was going according to plan for the goal-oriented Scarlett.
At age 19, Scarlett’s plans were suddenly and unpleasantly disrupted. Life as she had known it began to change rapidly for Scarlett. “My brother, Tim, moved to Melbourne to continue his studies. I was really devastated because we were so close. Then an orchard adjacent to our farm where we had played as children was ploughed down, and our neighbours, who were like auntie and uncle to us, moved away. They were all devastating things to happen all at the one time”.
Stressful as they were, these events were nothing compared to what came next. Scarlett began to experience nocturnal seizures. She has little memory of the first complex partial seizures she experienced but she knew that something was seriously wrong. Even now the events are a blur to her.
“I woke up one night to find two ambulance men standing in my bedroom, and I had no idea what was going on. They said I was fine and mum and dad told me I’d had a seizure. But epilepsy still wasn’t diagnosed. Then the next night I had another one. Then four hours later I remember sitting in the lounge room with a cup of tea; the next thing I was looking at the back of an ambulance. And then I lost about three weeks of my memory”.
Sometimes seizures are immediately diagnosed as epilepsy; often seizure activity can be misdiagnosed and, depending on the circumstances, epilepsy may go undiagnosed for some time. Because Scarlett’s seizures coincided with stressful events in her life, her seizures were diagnosed as ‘anxiety attacks’ and she was referred to a psychiatrist for treatment.
“I was having five or six seizures a day and my family could see they were getting worse. The psychiatrist at first advised my family to just ignore it when I had a seizure. They just thought they were anxiety attacks from the stress of everything happening.
“I knew they weren’t panic attacks, so I began to self-diagnose with everything from diabetes to cancer. The number of seizures was increasing to 15 a day – they were just constant and went on and on. Eventually the psychiatrist said I needed to have an MRI”.
Scarlett also began to have tonic clonic seizures. Fortunately she was referred to Melbourne neurologist Professor Mark Cook who at that time was doing clinics in Hobart. The MRI showed a birthmark on Scarlett’s brain, and it is not unlikely that the high stress triggered the seizure activity at that time. Professor Cook also introduced Scarlett to the epilepsy support service in Tasmania.
This period was a particularly bad time for Scarlett as her plans for the future were unraveling. “When it turned out to be epilepsy and I had to hand in my learner’s permit, I was really devastated because you must have your driver’s license to be employed as a nanny in the United States. I became really depressed because being a nanny was all I ever wanted to do. When I was given that news, I really thought it was the end for me. I just stayed at home for a year – it was terrible, really dreadful”.
Scarlett’s seizure activity began to stabilize with medication, so her parents decided to visit Tim in Melbourne with Scarlett for their first family holiday. “But as soon as the plane landed in Melbourne, the seizures started again”, says Scarlett. “Seizure after seizure; I really don’t remember much about the holiday other than the hotel room. We’d be getting ready to do something in the morning, and I’d have another seizure. Luckily mum and dad were able to get to see Professor Cook”.
It was also found that Scarlett experiences epilepsy-related palinopsia, a Greek word that means ‘seeing again’. “Ever since I can remember, I’ve always experienced a type of double vision. When I look at the television and see an image, I can then see that same image somewhere else. I have always had that, and I thought that was what everyone experienced. But one night when I said to mum that Barry Humphries image was in the oven, she suggested I tell Professor Cook about it!”
It was first thought that surgery would not be suitable for Scarlett, but in March 2008 Scarlett’s neurologist was able to provide an opportunity for her to have grid surgery which enabled her specialists to monitor and observe seizure activity. They were very frightening days for Scarlett - and her family and medical team - as she went through often very difficult reactions to the grid testing. Following the surgery and after two weeks in hospital, Scarlett’s seizure activity had decreased significantly and her condition stabilized. She returned to work as a childcare worker, once again full of optimism.
In May 2009, Scarlett achieved part of her dream and went on a holiday to the US. “I went on a group camping tour and had an amazing time. I had only one nocturnal tonic clonic seizure and luckily my camping partner was a nurse. There I was in the middle of West Virginia being helped by a nurse who knew what to do and everything was fine. She told me all about it, and wrote down what had happened. I didn’t tell my parents for a few days, though!”
Scarlett’s trip to the US encouraged her to consider doing some other type of work with children in the US, and she applied to be a summer camp supervisor. She was totally honest about her epilepsy and was left in no doubt that her condition would not be a barrier to summer camp work. In November 2009, Scarlett was accepted on a summer camp farm program in Connecticut.
“In June 2010, I flew from Tasmania to Connecticut spending a day in New York City. I went on a bus with a lot of other young people going to summer camps. Three days into the camp, I had an aura. The déjà vu wasn’t followed by a seizure, but I told the camp directors just to be honest about it. Two days later I was called into the office and told my position had been terminated. I was given the option of resigning or being fired”.
Scarlett was escorted from the camp. She was not allowed to say good-bye to the other staff, and the door was guarded while she packed her clothes. She was dropped at the bus station with no support or anyone to accompany her. As a visitor to the US, she had no rights and no support, and if not for the Australian consulate and some friendly people at a hostel, Scarlett was left ‘high and dry’.
The memory of those 12 days in the US even today are very vivid. “I was in an hysterical emotional state,” says Scarlett. “I was honest about my epilepsy and was told it wasn’t a problem. I hadn’t even had a seizure; I just thought it best to let the camp directors know that I’d had an aura. I was expecting to be there from June to December and I found myself back home in 12 days. I was devastated”.
“I was just so sad and distraught; I started to get very depressed again. So Mum and dad encouraged me to go to Melbourne and stay with my brother and his partner,” says Scarlett. “For the first six weeks I really couldn’t do anything. Then I got sick of sitting around, not doing anything, so I went to a local childcare centre, took my CV, was given an interview, and I’ve been working at the childcare centre near to my home ever since. Childcare is my whole life. If I couldn’t do childcare, I don’t know what I would do,” says Scarlett.
“I also contacted the Epilepsy Foundation of Victoria to see what activities were available, and from there I’ve been to the ‘Superfits’ group, on camps and volunteer in the office,” says Scarlett. “On the camps I found there were a lot of young people who were very isolated and never went out. I really feel I can do something to help other young people get through their epilepsy because I’ve been in their situation too”.
It is this motivation to help other young people that encouraged Scarlett to begin an informal social group for young people with epilepsy. Young adults from all over Victoria get together to enjoy social activities together, and to minimize the isolation that can come from the unpredictability of epilepsy and seizures. “We call ourselves ENERGY which stands for “Epilepsy: nothing ever restricts go-getting youth”. We try to get together regularly so no-one is feeling isolated”.
Scarlett is in no doubt about the first step to take when young people are diagnosed with epilepsy. “The best thing I did was to contact the Foundation. The first thing I would say to people (diagnosed with epilepsy) is just call the Foundation and get in contact with groups of people like yourself. Don’t sit at home by yourself and be isolated and depressed. I’ve been there, and it’s not good for you”.
“Try not to disappear. It’s hard to get out the first couple of times, but persist because it’s the best thing for you. It won’t be long before you know lots of people like yourself in the same position. And remember, your family and friends will look out for you, so just go to them for support when you need it,” says Scarlett.
Scarlett is on medication “day and night” and knows if she works too frequently and too long that she will tire quickly. Her advice to other young people is “to just pace yourself; do the things you can do within your limits”.
Scarlett still plans on having a longer holiday in the US despite her past experiences. She is invigorated by her contact with her ENERGY group friends, loves her childcare work, and her volunteer work with the Foundation. She is having fun participating in a music therapy program and a Tuesday art class.
“I know there’s been lots of ups and downs in the past five years, but I’ve made so many friends and learnt so much because of my epilepsy.
To hear that coming from Scarlett is not surprising. Her experiences with epilepsy have only accentuated the type of person that Scarlett is – positive, optimistic, full of life and forward looking. She is truly an inspiration for other young adults with epilepsy.
2 April 2011
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