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My epilepsy story with Simon McQuillan – motivation through adversity

You may recognise Simon McQuillan from Season 4 of reality TV show "Married at First Sight." But finding love is just one of the challenges that Simon has experienced since his diagnosis of epilepsy at the age of 18 years.

Simon McQuillan is no stranger to adversity. Diagnosed with epilepsy at the age of 18, Simon hit rock bottom in his early twenties. He was dealing with anxiety and depression that he believes were a side effect of epilepsy medication. At 20, he flipped his car after a seizure behind the wheel, severing parts of his fingers. His treatment plan was changed and things were going well for a while, until Simon was coward punched when on a night out. After this, his seizures changed and increased and Simon had to stop working.

Simon explains: “I had gone from being healthy, working in mining and had everything all lined up. In six months, I lost everything and had to move back in with my folks. I had next to no social life and had lost contact with most of my friends and was unemployed for 5 years.”

Life-changing surgery

At 24, Simon was left feeling as if he was out of options, so when his neurologist suggested epilepsy surgery, he jumped at the idea.

“I had gone from being someone who was extroverted and then couldn’t work, so I was not worried about the risk of surgery. I didn’t care because I couldn’t do anything, I had a speech impediment and had no quality of life. I had nothing to lose, either way at least it was a chance.”

Simon was one for the first people to undergo this surgery in Brisbane: “I had temporal lobe lobotomy surgery, about 18 months before Wally Lewis. It was a similar operation, but I had it in Brisbane. It was my only option. I was lucky the surgeon was moving from Sydney to Brisbane in about six months. They had to set up some of the equipment first, but I was one of the first ones in Brisbane to have that surgery done.”

The surgery changed Simon’s life. It was a hard recovery, but he went from feeling as if things were hopeless, to being back to his motivated self.

“I went from having 40 seizures a week to pretty much nothing. They gave me a 60 percent chance of success due to position of the epilepsy focus (where the seizures start in the brain). They told me within two months I should be okay, but I found I had to rest up for six months. After that, I got a basic job working in a cold room. Within 12 months, I had saved up for a house of my own and a holiday to reward myself. My seizures are now mostly under control, but it has changed and now I can get seizures due to stress, heat and lack of rest. They are at nighttime when I am tired during sleep.”

Looking for love

Despite these major improvements in Simon’s life, there was still one aspect of Simon’s life that was not fulfilled. Epilepsy had an impact on Simon’s self confidence and he didn’t date for about 10 years.

“Dating and meeting people was the biggest challenge. When it really started to set in, my self-esteem was knocked for a sixer. Why would someone be interested in me with my current issues?”

He made the brave decision to go on reality TV show “Married at First Sight” hoping to find love. Simon’s down-to-earth outlook on life meant he was a fan favourite on season three. The whole country was rooting for Simon and his bride Alene Khatcherian. Unfortunately, the pair were not able make the relationship work, but Simon was grateful to be matched with a caring partner in a difficult situation.

“When I was on Married at First Sight I let them know what had held me back with dating came down to social issues with my health. I was my own worst enemy. I was lucky to be matched with someone who was understanding and of all things a nurse. I was having seizures on our honeymoon at nighttime and she would pick me up off the floor and help me back to bed. In the morning, she would let me know what had happened. No matter who you are, everyone is susceptible to health issues,” he explains.

Challenging conditions

Simon believes the conditions on the show were a trigger for seizures.

“It was really full on. Sometimes the filming would be until 2-3am. I would not have access to medication on time or meals at the same time. We would have meals at ridiculous hours. I said to them If I was working in a factory there would be access to first aid or a nurse. One day we filmed until 3am and they wanted to start filming again at 6am. I told them, I won’t be there, and I am happy for you to tear up the contract. I advocated for proper breaks and a nurse onsite. Things would be a bit better for a day, then they would go back to the same thing,” he said.

Workplace woes

Simon’s family and friends have been a wonderful source of support, but over the years, he has suffered discrimination and stigma in the workplace.

“When I first was diagnosed, I was scared for years to say anything about it because of the stigma, in particular, in the workplace. I would not say anything about it until I was comfortable in the job. One time I was going for a job and I mentioned to the supervisor I had previously worked with a couple of years before, that I can’t drive anymore, but I can catch the train. He passed the message onto the employer and suddenly there wasn’t a job. People were afraid thinking I was going to be a liability. So, I made sure I didn’t tell until I had the job.” Simon explained

Building a business

While Simon has an easygoing nature, once his seizures were under control, his motivation was undeniable. He found ways around challenges in the workplace by investing money from a mine redundancy to start his own business.

“I started buying and selling cattle and invested in a business selling accessories for vehicles and trucks I have designed. I manufacture and send them all around Australia, New Zealand and other places overseas. I also drive a truck for Coles one night a week which is a great change mentally and socially.”

Simon would like to see others give people living with epilepsy and other conditions a fair go, whether it be in relationships or in the workplace.

“People need to realize there is a real person underneath that shield. If you see barriers put up it might be because they are worried about what you think. They have so much to offer. You should not judge a book by its cover,” he shares.

Medicinal cannabis

These days Simon rarely has seizures and credits his continued improvement to medicinal cannabis. When speaking openly about this change to his treatment, Simon has faced some criticism, but is keen to explain that it contains no THC and it is prescribed. He would like to see the barriers broken down for people living with epilepsy that medicinal cannabis may assist.

He shares “I am now using medicinal cannabis. I did a lot of research before commencing this treatment. The application process was a pain and there has been a number of glitches in availability. The product that I was using would become unavailable, so I would have to use a different product and it would not quite work the same. I’ve been on that for seven months now. Affordability at $500 for 20ML is ridiculous. Most people can’t afford that cost, but I am lucky.”

Simon's message

Simon is happy to be a mentor to others impacted by epilepsy and encourages people to reach out for connection and support from their local epilepsy organisation.

“I found Epilepsy Queensland on social media many years ago. Recently I have been following the stories people have been sharing and I thought I could share mine too. I went to the Woolloongabba office about 10 years ago and was given a lot of information to read.”

Simon encourages people to also give what they can.

“What have you got to lose? The next person you could be assisting could be your cousin who has only just found out they had epilepsy. It could be a friend who has had it for years, but you have not discovered. My brother has epilepsy and my cousin was diagnosed in late 20s. I also have an Auntie through marriage who has epilepsy. One in every 20 will have epilepsy and other similar conditions. It won’t kill you to give and the research can go so far.”

If you have a story to share, please contact us or request the list of questions by emailing pr@epilepsyqueensland.com.au.