Unmasked: one woman's experience living with Epilepsy
By Malinda Hayward for Purple Day
My first seizure occurred on 11th December 2008, I was 21 years old.
The day before was like any other day – I worked, went to the gym, did my usual 7km run and then went to bed. The following morning, I got up and went to work- I didn’t feel as though anything was wrong. There were no warning signs. One minute I was sitting at my desk, the next I was waking up in an ambulance. I couldn’t remember my name, the year and had no idea what I was doing in an ambulance. I wasn’t even scared – I had absolutely no clue what was going on and felt like I was in a strange state of euphoria. I remember how terrified my family and best friend were when they got to the hospital.
How had this happened to someone they loved who was so healthy?
After an overnight stay in hospital and several tests, nothing was conclusive. I went to my first neurologist appointment and had a series of tests including a sleep deprivation electroencephalogram (EEG). This particular test tracks and records brain wave patterns after the patient has not slept for up to 24 hours.
I’d like to take this opportunity to thank my best friend, Chiara, for not only taking me to the appointment, but for staying awake throughout the 24 hours with me. You have been one of my biggest supporters.
The tests confirmed I have late adult on-set primary generalised epilepsy suffering from grand mal seizures.
For those of you who do not know, grand mals are the seizures that cause the person to fall to the ground, convulse, lose control of their bladder (which is obviously very embarrassing) and, in some rare cases, may stop the flow of oxygen to the brain.
My seizures always follow the same terrifying format. I drop to the ground, convulse for a few minutes and remain unconscious for approximately 20 minutes. During this time, there is little or no blood flow going to my brain, causing lack of oxygen to the brain. The scary reality is this can cause brain damage or in extreme circumstances, death.
The most heart-breaking moment for me was when I had a seizure in front of my Mum in December 2016. When I woke from the seizure, Mum was next to me in the ambulance crying. I couldn’t remember my name and it was only once the oxygen started circulating that I started to come to.
Later, when we were back at my apartment, Mum broke down. “I thought you were dying…you turned blue,” she said.
“Then when you couldn’t remember your name or speak, I thought you might have brain damage.” Seeing how terrified she was hit hard. In a way, I’m lucky I don’t remember the seizures, but at that moment I truly understood the emotional effect it had on all of my friends and family.
The impact on my life has been enormous, including a loss of independence, leaving me feeling totally helpless at times.
I can no longer push myself and do high intensity exercise. Instead, I turned to yoga and Pilates (big thank you to Power Living Yoga and Studio Pilates for showing me I can still exercise in ways that benefit me).
I go through periods of not being eligible to drive if I’ve had a seizure or am changing medications. I have strict rules around flying internationally. I am not allowed to bathe unless someone is in the house with me. I can’t swim in the ocean if I don’t have someone looking out for me. The amount of money spent on medication, specialists, tests, GPs, hospital admissions, private health insurance and ambulance rides has been in the tens of thousands. All this in less than a decade.
Epilepsy has also affected my mental health, with chronic depression and anxiety that cripples me at times. I feel that having this life long illness means I’ll never find a partner who will willingly take me on when I feel so unbelievably flawed.
I have been told by my doctors that I may not be able to have children. I have always wanted to be a mother so dearly. It’s not a never, but if I am able to conceive, I will be putting myself and the baby at high risk.
I have had very little self-esteem and self-worth at times, which has been hard for people to understand, because on the outside I look like a perfectly healthy woman. To protect myself, I have become very good at putting on a mask and keeping a wall around me.
To my previous employers – Hugo’s Manly, Sunset Sabi and Chica Bonita, who all understood my condition and made sure I was always safe at work, letting me rest if I was feeling too exhausted – thank you for always making my safety and health a priority.
Most importantly, to my family and closest friends: thank you for being by my side in hospital, taking care of me when I’ve gotten home, driving me around to medical appointments when I’ve been unable to drive, supporting me financially when I’ve been unable to work, and being on the other end of the phone for me when I felt like life wasn’t worth living and didn’t think I could go on. I am still here, still fighting because of YOU.
Now is time for me to take off the mask, break down the wall and start dancing through life. Although this makes me feel vulnerable, my hope is that it will help others overcome adversities associated with epilepsy.
While I used to feel like a victim, I’ve realised I am a warrior. I will continue trying to heal and care for myself for as long as I have breath in my lungs.
Please know – despite the challenges thrown your way – you CAN and WILL get through them.
You will learn how resilient you are and what you are capable of.
You will LIVE.