Max was 16 when his symptoms first started.
“It started as a nauseous feeling every month or two. This built into stronger feelings of nausea that were more frequent. They then became so strong I was unable to focus on what other people were saying and what I was saying just went quiet,” he told Mamamia. “One night I was at a party and my memory just blanked out. My girlfriend at the time took me into the bathroom and waited for me to ‘come to’. I couldn’t remember anything that had just happened.”
It was at this point Max decided he should see to a doctor.
“The epilepsy diagnosis was soon overshadowed by the brain tumour news,” Max’s mum, Elizabeth said. “We had to wait a month or so over Christmas to compare a follow up MRI to see whether the tumour was growing and to find out whether it was benign. It was heart breaking.”
“You just want perfection and an easy life for your kids and this was so shockingly far from that,” she continued. “The mood of everything just changed, it was an absolute challenge to maintain life as normal. It was most important to maintain strength for Max, not be one of those flip out mothers.”
A benign tumour was found in Max’s brain, the cause of his epileptic seizures. Because of the tumour’s location, an operation to remove it was – and still is – too dangerous.
Max’s diagnosis has meant extreme life changes for the now 18-year-old. He’s not able to drive; he’s not able to work in jobs like retail or hospitality; he can’t do anything that might be dangerous if a seizure hits. He had started doing stand-up comedy before the diagnosis. He’s now quietly script writing a sit-com at home instead.
“I get about 10 seconds of warning before a seizure hits, it’s this weird feeling of building nausea. It’s like my teeth and tongue turn into different textures,” Max said. “If I’m holding a drink or something, I put it down. During the seizure itself, I usually just dribble all over myself. Tapping my hand on my leg. Sometimes people will hand me tissues and I don’t know what to do with them. Sometimes they’re more intense, and there is more chewing of my mouth and tapping of my hands. I don’t remember any of this. This is just what people tell me. Coming out of a seizure feels like being woken up in the middle of the night from the deepest sleep. You feel so vague. I have no idea what triggers them.”
Medication is all Max has to try and reduce the severity and frequency of the seizures. At the moment Max is on three different types of medication but he’s tried many others.
Tablets upon more tablets upon more tablets are now an everyday part of Max’s life. Even with all these pills, he’s still having seizures every three to five days. Taking over his mind, stripping his consciousness, hitting him unpredictably. Any time, any situation.
“Watching my son pop a bunch of pills is pretty agonising, but it’s important to be supportive of what’s necessary,” Elizabeth said. “I’m still not convinced they’ve been great [for him] though. Some have made him dizzy and weary. He had fewer seizures before beginning the pills. But if he tries to stop, they’re worse again.”