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The idea is simple. Let’s teach each other about each other. About our health and wellbeing. And about our illnesses. Furthermore, let's dispense this knowledge to our surroundings. Because an illness changes with perception, and this perception can make all the difference in the way we live.

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Stories

Laura

Neha Kinariwalla

 Laura chose not to submit a photo. We respect the rights of patients to preserve their privacy.

Laura chose not to submit a photo. We respect the rights of patients to preserve their privacy.

It is funny how one event can completely change your life expectations, idea of happiness or outlook on life. As a 35-year-old mom of two, I admit to having felt flustered and worried most of the time, trying my best to hold down a full-time job while raising two toddlers alongside my husband, who also had a full-time job. It was usually with a mixture of tiredness, happiness and a little guilt that I would run over the day’s events when I turned the light off, wondering if I was letting down my work, children or husband, despite my never-ending race to fulfill all their expectations.

My sons Reese and Robert are now aged eight and six. When Reese was four, something happened that would totally change our lives and make me rethink what was worth worrying about. I remember it was a Friday, the only day I work half day, and I was sitting in the backyard with a cup of tea, watching Reese (then aged four) and Robert playing with a new set of toys their grandmother had bought them the day before. Suddenly, Reese's normally lively expression went completely blank; he seemed to lose awareness of what was going on around him and was completely oblivious to my attempts to get him to ‘snap out of’ what at first seemed like simple absent-mindedness, but which, as the seconds passed by, awoke my instinct to the fact that something was wrong.

Later in the afternoon, I was surprised when the ‘absence’ happened again. When my husband came home, I told him about what had occurred and we decided to take him to the hospital. We were very surprised when a neurologist told us that Reese had suffered from a mild epileptic seizure known as an ‘absence seizure’. The doctors told us that the good news was that Reese might grow out of this in his adulthood; the bad news was that he could suffer from ‘complex absence seizures’ (seizures in which an epilepsy sufferer can make movements in addition to staring into space—these can include blinking, chewing or hand gestures). The medical team said he could also have learning difficulties, and social and behavioral issues.  

It felt like my world had been torn apart; suddenly, everything that had seemed such a hurdle to me (getting the kids bathed, fed and dressed every morning, getting them to daycare and making it to work on time) seems like child’s play. Reese had a condition the doctors assured me could be treated with medication, but there were no guarantees. They also said that children who began having absence seizures before age nine were much more likely to outgrow them than those who began seizing after age 10, which was a bit of a light at the end of the tunnel.

Two years have passed since that fateful day. Reese continues to have occasional seizures despite the medication, but they are always short-lasting and so far, he has never had a ‘complex absence seizure’. I like to think that the lifestyle changes we made (eating healthy, ensuring Reese slept well and did exercise) went a long way towards keeping more complex seizures at bay, as well as making him feel confident about himself. Reese has been doing well at school and though he does have occasional tantrums, I like to think that is just part of his character and that together, we can work on keeping them to a minimum, helping find alternative outlets for any anger and frustration he can feel.

My youngest son, Robert, now six, is a happy, healthy boy; he always seemed to be the ‘old soul’ in the family and he never questioned the extra attention and care we bestowed on Reese. On the contrary, he likes to act like the doctor in the family and often says that when he is older he will study Medicine to find a cure for Reese’s seizures. When Reese is at his angriest, Robert is the one person who can help him ‘snap out of it’. With love, support and togetherness, I feel like there is no challenge we cannot overcome.

John Hopkins Medicine, Absence Seizures, accessed January, 2015.
PsychGuides, Epilepsy, accessed January, 2015.
Epilepsy, Absence Seizures, accessed January, 2015.