Carina Brewster

I’m taking part in Walk for Epilepsy around Australia because...

On the 22nd of December 2020, my last day of work for the year, I drove myself to a neurologist appointment expecting him to say the bizarre episodes I was experiencing that were getting worse literally by the day had something to do with stress.

I had had a big year, in a big job, working from home in lockdown navigating 5 children with my husband.  Twenty minutes after entering his office I was diagnosed with Left Temporal Lobe epilepsy at the age of 38. 

My drivers license was taken from me immediately and I was told I could not drive myself home. I was shattered. I did not understand what was happening.  I had to make decisions about medication immediately for a diagnosis I had no knowledge about. 

I left the neurologist still trying to calm my crying through a face mask with a script and referrals for all sort of scans and EEGs that I didn’t understand, and was told the first port of call was to eliminate any chance of a brain of tumor.

Needless to say Christmas with my family of seven that year was a little rough.

After 2 weeks too long it was confirmed I didn’t have a brain tumor, in fact they couldn’t find anything at that stage that caused my Epilepsy, and there are no triggers that could be identified - I just had to accept that’s what it was.

Fortunately now, neurologists have found I have an abnormality on my left temporal lobe which is the likely cause.

My short journey with epilepsy has had it challenges.

My first one was losing my license, getting it back, and then losing it again and the cycle continues.

There have also been three different types of medication I have tried so far at different dosages to keep the seizures under control – none of them quite doing their job.

I’ve tried to navigate the side affects of each of these medications as best I can like depression, what I would describe as general fuzziness, and memory loss.

There was starting a new job and feeling like I needed to tell my manager I have epilepsy, and the worry about judgement that might come with that,

There was also the week long of uncontrollable seizures a few months into starting my role that came out of the blue and, how epilepsy makes you question your mortality and what's most important.  At the back of your mind always being anxious about the next time I will have a seizure, not if.

I don’t want you to feel sad or sorry for me. It is my reality and I have the best support network I can possibly have. I have changed my neurologist to a man who is just bloody awesome (shout out to Professor Mark Cook), my husband Bart is second to none, along with my family.

My story is only one of many, and one where epilepsy's impact has been less severe. Think about that.

It took me nearly 12 months from my diagnosis to openly share my story. It was the 2021 Walk for Epilepsy that connected me with others who knew what I was experiencing, and made me feel it was ok to open up.

So many people in my network of friends, family and colleagues have their own personal stories about themselves or loved ones that really brought to the fore how common epilepsy is, how vastly different people's experiences are, but also how much further we need to go to educate others. 

Because of this, my family and I have committed to participating in the Walk for Epilepy every year to support much needed research and education.