Remy has lived with epilepsy since childhood. Over the years, the stigma associated with epilepsy has presented her with a number of challenges. Very recently, Remy lost one of her biggest supporters – her father – and due to her fear of triggering a seizure, has not been able to grieve the same way others would.
However, through thick and thin, Remy has always been able to rely on her sister, Nathalie, for support and encouragement. Nathalie has witnessed first hand the impact epilepsy has had on her sister’s life, including being present for Remy’s first seizure.
Though they now live apart in different countries, this has not stopped the sisters from virtually coming together to participate in the Walk for Epilepsy. Together, they hope to get people talking in both Australia and Lebanon, and encourage others to learn more about epilepsy so that one day soon we can break the stigma that burdens so many.
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Remy was diagnosed with epilepsy at the age of 10. She experiences focal to bilateral and focal aware seizures.
During the early stages of her diagnosis, Remy didn’t fully comprehend what epilepsy was which made it easier for her to accept. However, this changed once she reached high school.
Remy: “It started bothering me during high school as I wasn’t allowed to go anywhere without one of my siblings due to fear of seizures, so I felt awkward around my friends.”
Remy’s experience with epilepsy continued to prove difficult as she got older, particularly due to the stigma attached to the condition and feeling as though she was unable to talk about it.
Remy: “I was avoiding nightclubs and alcohol at an older age and having to explain why without talking about my epilepsy. I was warned not to talk about it because people will look at me differently. And what affects me most is having to control my emotions, mainly grief – my biggest trigger.”
Remy sadly lost her father just less than two years ago, a tragedy which has been made worse by her fear of triggering her seizures.
Remy: “Lately it’s affecting me on a mental level as I can’t grieve the loss of my father… I’m scared of having seizures and losing my driver licence again. No matter how long you have lived with it and gotten used to it, epilepsy will find a way to affect you in a new way.”
Before giving birth to her first son, Remy studied banking and finance and worked as a Business Manager for a financial and economic provider. She is now enjoying being a full-time mum. In her spare time, Remy loves dancing, listening to music, painting and reading, as well as holding a keen interest in medicine.
Remy: “I’m highly interested in the medical field, especially neurology due to my epilepsy and genetics.”
Remy first encountered the Epilepsy Foundation on social media three years ago when she participated in her first Walk for Epilepsy.
Remy: “(The Epilepsy Foundation and the Walk for Epilepsy) gave the push I needed to open up about my epilepsy and to start my advocacy journey.”
Today, Remy’s seizures are more under control. Equipped with the knowledge she has gained in learning more about her condition and the courage she has built to now share her story, she is determined to break down epilepsy and advocate for those who experience it and their carers.
Remy: “Epilepsy is not only seizures and it doesn’t only affect us but extends to our families/carers. It is a lifestyle enforced on us and those who care, as we all need to adjust many factors in our lives to adapt to this diagnosis. Also, women with epilepsy can get pregnant and have healthy babies.”
In 2023, Remy is participating in the Walk for Epilepsy with her sister, Nathalie, and nephew, Jason, who both live in Lebanon. Nathalie has been a rock for Remy since day one, having been there when she experienced her first seizure.
Nathalie: “I still fully remember the first seizure, I didn’t understand what was happening. Everyone was screaming with fear and my sister was unconscious in my father’s arms. I was asking with great fear what happened, and this feeling accompanies me until today… I learned more about epilepsy, its various seizures and its treatment and how to act when a seizure occurs, but anxiety does not leave me. Although I have lived the reality of epilepsy and witnessed the strength of my sister, along with everything she has taught us about it throughout the years, my fear for her safety and wellbeing has always been stronger than any logic.”
Over they years, Nathalie has witnessed most of Remy’s seizures, which has taken it’s toll on her as someone who cares for a person living with epilepsy.
Nathalie: “One of the hardest challenges I’ve ever experienced has been when I see my sister shaking unconsciously when a seizure occurs. You’re so afraid of losing your loved one in seconds. This constant fear was daily when she went to school, to university, to work, while driving, while out with her friends or simply while she was taking a bath. The question “what if” is always there even now that she’s in Australia and when fully knowing her seizures are under control! All this is a daily challenge that I was living, though I always reassured Remy that everything will be fine no matter what.”
Despite having to watch her sister battle epilepsy daily, and often fearing for her safety, among other things, Nathalie feels the biggest lesson she has adopted is to not give up hope.
Nathalie: “Everything we went through was unexpected, and the most important thing I learned is not to lose hope, to continue researching, asking questions, and trying to find alternative solutions to develop what exists and help… Trying to spread awareness is one of the most important things I learned. I was surprised that in Australia, people with epilepsy can be monitored for seizures. Remy had a week-long EEG back in June, because everything in Lebanon is done in hospital. I also learned that you can have a seizure without realising you had one.”
The sisters’ Walk for Epilepsy team, From Lebanon to Melbourne, is looking to raise $800 and spread awareness across both countries.
Remy: “(Nathalie) participating in the Walk from Lebanon means the world as she will be doing something I should’ve done years ago, which is sharing my story and talking about epilepsy where it’s really needed and where people are still afraid to talk about it and no one should go through it alone.”
Nathalie: “It is an indescribable joy for me that I can support my sister even with a simple thing, especially that she is miles away from me. It means a lot to me that I am able to offer her moral support as I know it means a lot to her. This year, I will be participating with my 15-year-old son to support the one we love and are proud of.”
Remy and Nathalie wish to encourage others to get involved in the Walk for Epilepsy as they believe it to be a step in the right direction towards allowing people to talk about their condition and develop others’ understanding of epilepsy.
Remy: “People usually participate in events supporting many causes, but not much when it comes to epilepsy because they really don’t know much about it. Walk for Epilepsy provides this opportunity for them to learn/talk about it and teach others and to help us, people living with epilepsy, by raising funds and by sharing the word… not only in Australia, but around the world as one discovery here can/will help others in different countries.”
Nathalie: “A few steps do not tire anyone, but they help so many people in many ways. I encourage all people from all over the world to take part in this event. Any support means a lot to every person living with epilepsy and to those who love them in order to develop research and treatments, spread awareness and provide support and love… The journey of a thousand miles begins with a step.”
Support people living with epilepsy, like Remy, by registering for the Walk for Epilepsy. Visit https://www.walkforepilepsy.org.au/0AC34C to register.
