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PURPLE DAY: JONO’S STORY

COVID-19 has required us to make many changes to how we work and one of the things that we take for granted is getting together for our regular health and wellness series. In March, Schlam Group invited Epilepsy WA to speak about the commonly misunderstood neurological condition.

While the event did not go ahead, the willingness to share vital information has not.

As an Epilepsy sufferer himself, Schlam Group Marketing and Brand Manager has shared his thoughts on the condition, the side effects, and how it has impacted his mental health over the last 14 years in the following article.

The last thing I remember was sitting on my balcony. 

I was living in Dubai at the time. Through some twist of fate, I’d ended up there and was a presenter on the city’s most popular English radio station. I was working primetime breakfast and drive shows and was a senior member of the team. It was a lot of responsibility, but I was proud to be there and loved my job.

That particular day wasn’t out of the ordinary. After a productive day at the office and dinner with my then-girlfriend, I was sitting on the balcony soaking in the last few days of winter in the desert.

Then I woke up on the floor. 

Like a strange dream, I was surrounded by people who were yelling and poking me. First my girlfriend, then her parents and for some odd reason a pair of very official-looking paramedics. They were all inside my one-bedroom apartment, making lots of noise.

I might have been too afraid to talk or perhaps I simply couldn’t get the words out, but I had no idea what was going on.

The next couple of hours is a bit of a blur. When I came around, somebody explained that I’d had a seizure and smashed my head on the balcony railing, requiring a dozen stitches in my forehead. It’s faded these days, but the injury left a Harry Potter-like scar, which proved to be a bit of a talking point at parties.

Before that evening, I probably couldn’t even spell epilepsy let alone understood what a seizure was, but that was just the beginning.

The seizures continued, and my medications didn’t work. That made me sad.

Because I was afraid to work odd hours in a studio alone, I stopped working as a presenter and took a back-office job. That made me sad.

I couldn’t drive and was in and out of hospital and doctors offices all the time. I went from being a fiercely independent socialite to needing people constantly for transport or medical assistance. My girlfriend couldn’t handle it and left. That made me sad too. 

The worst thing was that people couldn’t visualise what was wrong with me. I’m confident that some even thought that I was using my diagnosis to get out of doing things.

Things haven’t been all bad. 

Thanks to lots of trial and error with my medications, quiet periods have allowed me to travel, work and even gain a postgraduate qualification.

My experience in the media has helped me in the communications and marketing field, and because I know first-hand how awful you can feel when you have nothing to throw your energy into, I’m grateful for every day at the office.

Side effects are the main problem these days; they’re almost worse than the diagnosis. 

I’m currently on three – sometimes four – medications, which has proved to be satisfactory for seizure control; however, they make you sick in other ways.

Anxiety, digestive problems, tiredness, nervousness and even suicidal thoughts are all emblazoned as possible side effects on the packaging of most epilepsy medications. I’ve experienced most of those at some point.

But aside from the medications, it’s estimated that 20-30% of patients with epilepsy have psychiatric disturbances.

Mental health issues are often neglected or misunderstood in people who also have epilepsy.

Seizures can occur at any time at any place, and this can cause a person to feel out of control. This can result in something called ‘locus of control’ issues. The feeling of losing control extends beyond the seizure itself and creeps into peoples careers, their studies or personal life, and this can result in a very negative mindset and the tendency to catastrophize – or view things as much worse than they are.

For me, this all came to a head in 2017. I felt utterly trapped working in the UAE but also felt anxious about moving back to Perth. I was caught between two worlds and carried around a terrible knot in my stomach, which I only managed to undo by making mind up to give Perth another go.

Despite my problems, I know I’m incredibly blessed to have the support – both medical and emotional – that I do. 

Others aren’t so lucky. If my story can help anyone, then I’m prepared to shout it from the highest rooftop.

I’ve needed many helping hands throughout my 14-year journey; now it’s my time to pay it forward.

While Epilepsy WA was not able to speak to us on Purple Day, I urge you to support the organisation. The non-profit receives no government funding, and with so many good causes out there and people feeling the budget pinch due to the current economic climate, it needs all the help it can get to continue its work.

http://www.epilepsywa.asn.au/