May 1, 2024, is indelibly marked on Megann’s memory as the date when everything changed. Prior to that day, Megann was a healthy, busy professional, balancing motherhood, an international job, and many sporting pastimes. A medical emergency in a gym class that Wednesday sent her on a rollercoaster journey that led to an epilepsy diagnosis, challenging treatment course and a new reality where she lost the ability to do things she once took for granted, like travelling alone or standing on a train platform by herself. Having worked in the epilepsy space for several years in her pharmaceutical career, Megann thought she understood the condition, but nothing could prepare her for the isolation, and stigma her diagnosis revealed.
Megann’s heart monitor in a gym class showed the first sign of something wrong – and when removed from the studio, she experienced shooting pains which felt like a heart attack. Megann then went into a 2-minute tonic-clonic seizure, involving muscle stiffening and jerking, stopping breathing and eventually losing consciousness. After paramedics assisted her, a battery of scans resulted in a diagnosis of cerebral arteriovenous malformation (AVM), a rare congenital disorder, which also triggered a condition Megann was much more familiar with – epilepsy. Over the following months, another seizure followed, this time in the presence of her husband, and a demanding treatment plan ensued. One of the most challenging moments was receiving Gamma Knife radiotherapy, when, without sedation, a head frame was screwed to Megann’s skull, to precisely position her head during radiation treatment.
Megann notified the driving agency of her diagnosis prompting her licence to be revoked. This was the first step in the undoing of the independence and identity she previously knew. Due to the risk of seizure, many activities Megann had taken for granted were firmly off the table: caring for her young daughters alone, running, walking along a busy road, standing on a train platform and even taking a bath.
Megann grew to rely on her family and friends in an entirely new way and they all became essential to her safety. Megann reflects on just how hard it can be for loved ones, who feel a sense of helplessness. “It’s the look on my face when I have a seizure that my husband finds hardest,” she says. Her oldest daughter, aged five, has learned about epilepsy with the help of a special storybook to be prepared to help in an emergency, how to contact another adult and call the paramedics.
Megann describes the invasion and her sense of indignity in experiencing a seizure, which can involve loss of consciousness, and even bladder or bowel control. She finds it disappointing when people react with fear and distance themselves upon learning she has epilepsy, as if a seizure is imminent. She jokes that telling someone you have epilepsy isn’t going to trigger a seizure.
Megann has accepted that her epilepsy and treatment are for life, but that the way she manages it will evolve over time, and her independence is gradually building back. To anyone on a similar path, she stresses the importance of education for those around them. “There’s less use in someone finding my epilepsy identity card when I’m mid-seizure,” she says. Instead, she looks for opportunities to inform people upfront about what to do, whether at the hair salon or office.
Known for her energy and positivity, Megann maintains a can-do attitude, and has sought out new activities to replace those no longer possible for her due to her diagnosis – like yoga instead of running – and continues to adapt to her new normal, like moving into a house in a less remote location. Megann aims to live her life to the fullest and demystify seizures, empowering those around her to provide support in the process.
