Scarlett has epilepsy and until a few years ago lived here in Tassie running some of Epilepsy Tasmania’s Hobart support groups with her mum.
Now living in Melbourne, Scarlett was recently acknowledged at the international Golden Light Awards for her contribution to the epilepsy community.
Here is Scarlett’s story…
“My epilepsy journey started in January 2006. I was 18 and had the next 2 years of my life planned out – I was about to embark on my life-long dream to be an au pair in the United States of America. I was on the way to gaining my licence and had a job working in early education saving up for my trip.
Then epilepsy hit!
Standing in a supermarket with my mother, without warning, a complex partial seizure. I have no recognition of this. With my GP having no explanation of what had happened the (seizure ) was dismissed. 6 months of increasingly worsening complex partials still with no diagnosis – that’s when the tonic colonics reared their head.
After three nocturnal tonic clinics, I was taken to the Royal Hobart Hospital and diagnosed with epilepsy by Neurologist and Epileptologist Professor Mark Cook.
Initially, I was thrilled with this diagnosis and was put on medication to control the seizures. They worked for a while, but the complex partials came back.
This is when the depression hit a realisation of not being able to hold a licence meant I could no longer travel to the US to be an au pair. I lost countless friends and my family and I had to adapt to a new way of life.
To help us through this we turned Epilepsy Tasmania. Here we got the support needed in the early days and months to understand epilepsy and how you can continue with your life. I attended monthly support groups and camps annually.
In 2008 underwent neurosurgery at St Vincent’s Hospital Melbourne. This is where the Epilepsy Foundation of Victoria first made contact with my family and I. I became a regular on their adult and women’s getaway weekends flying over from Tasmania to attend these.
By this time my epilepsy was under control and I finally made it to the US to be a leader at a summer camp. I had returned to work in early education and gained a diploma in Early Education and Care.
I always remembered the help and support given to me and decided to return what I had received. My Mother and I took up the running of the Hobart epilepsy support group that ran every month for two years – this brought people from all over Southern Tasmania together. We provided lunch, a safe environment and somewhere where epilepsy was normalised. We shared birthdays, joy, laughter and at time tears for those who left us along the way.
During my time volunteering in Hobart, I decided to put my name down to volunteer on an adult getaway in Victoria.
This saw the start of what I would call A Love Affair for volunteering on weekend getaways. At every opportunity, I put my hand up and flew to Melbourne to volunteer on adult, family and women’s network getaways. The joy of seeing people being able to let their guard down and relax in this safe environment is one of the most rewarding things I have been a part of.
In 2015 I moved to Victoria where I became a volunteer co-leader of the adults with epilepsy support group and the women’s epilepsy network. This role saw me organise regular outings in and around Victoria for people living all types of epilepsy. We arranged activities, day trips and evening meals. Everyday normal stuff, except for people with epilepsy this everyday normal stuff comes with the interruption of seizures. Being an inclusive support group means that if a seizure pops up a leader is there to help and everybody around doesn’t stop and stare.
Being a volunteer has been one of the most enjoyable things I have done. It has seen many highs and some very sad lows. But knowing when you hear that diagnosis of ‘epilepsy’ that you are not alone and there are those to support you every step of the way makes the road less rough.
In March this year, the Epilepsy Foundation (Victoria) nominated me as a shining light for people with epilepsy, due to my community service to the epilepsy family both in Victoria and Tasmania.
The nomination area covers 11 countries in the Western Pacific region
In April I received an email congratulating me on my success and confirmation that I, along with 7 others from around the world would travel to Bangkok to receive our awards at the 33rd International Congress in late June.
Once in Bangkok I met the other recipients from their regions, where we each gave a presentation telling our own personal journey with epilepsy and how we’ve helped to support other many other people on the same path we have walked. These were told to a wide audience of people from people with epilepsy, CEO’s, the International Bureau of Epilepsy president and vice-president along with neurologists.
At the opening ceremony in front of 2,000, we were presented with the Golden Light award.
Over the next five days, we attended many symposiums from the social impact of epilepsy to the importance of medication being able to have the opportunity to meet others and come together in a positive way has once again given me hope that epilepsy will soon be accepted by the wider public.
In 2021 I am hoping to travel to the next International Congress to discover how my fellow golden lights have been in their quest to end the stigma of epilepsy.”