For the past five years, Georgia hasn’t been left alone for a single moment. “I don’t do anything by myself, I am with someone 24/7,” she said. “Because the seizures come any time of the day or night.”
Georgia has two types of epilepsy. Tonic Clinic Epilepsy – the type that causes the grand mal seizures you might have seen on TV, and Medication Resistant Focal Epilepsy. Which means that no matter what she does, or what medications she tries, the seizures are unlikely to ever leave her.
“I struggled really hard with being treated like I wasn’t able to be fixed, that there was nothing they could do for me,” Georgia said. “I was told by one Neurologist, ‘This is your life, live it’.
More than 800,000 Australians will develop epilepsy during their lifetime and for more than 50% of those people, the cause will remain unknown. Epilepsy is more prevalent than Parkinson’s Disease, Cerebral Palsy, Multiple Schlerosis and Muscular Dystrophy combined1.
March 26 is Purple Day, an Epilepsy Awareness Day, where Australians are encouraged to wear purple, and raise funds and awareness for a condition which can affect anyone, at any age, and which is still widely misunderstood.
For years Georgia found herself bounced between doctors and specialists without answers or support.
“They didn’t understand what was going on in my body, in my brain. I just kept hitting brick wall after brick wall after brick wall. You became a number to everyone. You weren’t treated like a human. So yeah, that was really horrible,” Georgia said.
At one time Georgia was having upwards of 50 seizures a day, and while currently that figure is closer to 10 seizures in a 24-hour period, there is no guarantee they won’t increase. The seizures, besides being frightening, have also led to memory loss.
“I would be talking to someone, and I would have a seizure. It is as if you’re in the middle of a conversation, you walk out of the room for two seconds, and when you come back you have no memory of that conversation.
“Being able to communicate with people was difficult. I would want to discuss things with my husband or family, and they would say, ‘we’ve had these conversations, we made a decision on that.’ And I wouldn’t remember.”
Georgia grieves the life she had, from being a young person pursuing a career and a degree in childhood education, to being unable to think of what word to use or how to use it properly.
“I went down the path of a lot of mental health problems, but no one passed me onto mental health support, there was no medication or intervention. Suicidal ideation was huge. It was just really hard.”
Photo supplied: Georgia and the giraffe at Dubbo Zoo
Georgia was at a low point when she called Social Futures and was put in touch with Kristin, a senior local area coordinator. Social Futures is an NDIS partner and local area coordinators, like Kristin, work with people with disability, their carers and their families to help them to understand and access the NDIS and to link them to information, support and services in their local community.
“When I got in contact with Kristin, she just treated me with so much dignity, like I was a human. It felt as though she would do anything in her power to help me get the help I needed. To feel that I was worth the time and the energy and the care – that I was important. I hadn’t had those feelings for a really long time.”
Kristin is assisting Georgia to apply for NDIS funding and has also linked her with other supports including specialist support groups and programs for both herself and her family.
“She helped me with a mental health care plan, what to ask my doctor for; she helped me with a companion card, because I am never alone, so that person was able to come with me. And it wasn’t ‘why do you need them? What’s wrong with you?’ Again, the dignity of just being able to show a card and not have to explain why, was really lovely.”
Connecting Georgia with support groups who understand her journey has been life changing. “Just being with likeminded people so that aloneness isn’t there anymore. You feel like you’re part of a greater community, and being able to talk to people helps.”
“Having Social Futures on our side means that I don’t really need to worry, I know that Kristin is there and if I need anything I can talk to her. It’s great just having that one point of contact.
“She has been there every step of the way and given me great communication. If I have any questions, I pop her an email and she responds. It’s been really good, and not only just for me, but the support that Social Futures gives to your carers is great too.”
“It all started with a phone call. I was so scared to make it, but I just had to give myself the courage to call and say, can you help me? And it worked.”
“We just keep plodding along. We don’t give up easy, I don’t give up easy. I am a fighter, I will just keep going,” Georgia said.
If you would like to learn more about Social Futures disability support services in NSW, accessing the NDIS or about any of our other support coordination services and inclusive programs, call our LAC Hotline Monday to Friday, 8:30 to 4:30pm on 1800 522 679 or email [email protected]
