Bursting with life
March 26 is Purple Day, thanks to a young Nova Scotian
March 24, 2017, 4:10 pm ASTLast Updated: March 24, 2017, 4:15 pm AST'
Cassidy Megan is dressed up. She walks through the Cunard Centre’s doors with gentle poise in her shiny black heels. She’s quiet, holding her head high with confidence. She practiced her entrance an hour before at a friend’s, along with touching up her lipstick and smoothing flyaway hairs.
The volunteer at the door, headset on and checklist in hand, lights up when Cassidy and her mother Angela appear.
“Ah, Cassidy Megan. Good to see you again. Table 39 tonight,” she says, checking her name off the guest list. She points to the far corner of the room: coat check.
The annual Family SOS awards are full of sweaty handshakes and musty cologne. Middle-aged men circulate business cards from their suit pockets mid-laughter. Women flock to silent auction tables, chequebooks in hand, bidding on salon certificates and hockey jerseys. The gala raises money to help Nova Scotia families become stronger and healthier.
Cassidy weaves through the sea of black ties and hands her coat to another volunteer. The small receipt, handed to her in return, slips out of her hand. Her knees, bending to the floor, make her dress puff out in a circle of purple and green flowery perfection. Only a few seconds pass before she heard the sound of a teenage girl’s worst fear.
The rip of fabric.
A five-inch, red heel pierced the bottom-right side of Cassidy’s dress. It created a misshapen oval in the mesh-like tulle. A middle-aged woman with curly blonde tresses, wearing a tight black dress, looks down to remove her shoe. In a rush, she doesn’t give Cassidy any sort of apology. She passes by to greet a couple standing to the side drinking wine. Everyone around Cassidy noticed.
Her mother, Angela, has a moment of panic. “Don’t move,” she mouths to her daughter. Cassidy slowly stands up, exchanging a worried look with Angela, not knowing what to say. In a vertical position the rip is much more gaping.
Angela scurries to find someone who can sew. Cassidy’s first pay cheque, two weeks of work, paid for this and another dress. Angela wants to fix it, not wanting half the money to go to waste.
Cassidy considers for a minute; is this something to really stress about? She’s receiving the Courage to Give Back Award for inspiring youth in Halifax. Her speech needs to be practiced before going onstage. People need to be greeted.
She covers the rip with her purse, which is the size of a small dog and big enough to hide it. She calmly walks on. The rip is never mentioned or noticed again. She accepts her award with an elegant speech and standing ovation. What would be disastrous to another teen was a small inconvenience to Cassidy, who has bigger and better things to think about.
Cassidy sits with her knees pulled up to her stomach, underneath a blanket on a worn-down couch in her living room. An inner chill settles in her bones and muscles. She pulls herself close for body heat. Her fingers curl tightly around her teacup like a protective clasp. She rarely complains she’s uncomfortable. She wouldn’t want you to worry. In her home, she lets her body become fragile.
Underneath her soft brunette bangs and freckles, Cassidy is smiling. She speaks thoughtfully, carefully constructing her next sentence. This doesn’t mean she can’t crack a joke or two, or yell “sugarpops!” when she accidentally drops something on the floor. Cassidy likes to joke, despite her health problems. She has epilepsy, a neurological disorder causing unpredictable seizures.
Diagnosed at seven, Cassidy was in denial. When her parents told her grandmother, she was angry. She realized she didn’t want it. She felt no one could understand her sickness and was scared and alone.
No one needed to know either, especially her friends. She feared being exiled and labeled as weird. She thought they might make fun of her and not want to be her friend.
The walls and nearby tables are full of family photos and mementos. Dishes are left undone. Papers, schedules and daybooks are scattered over the kitchen counter. The family dog, Dexter, runs frantically around with a cone on his head. Bailey the cat follows with her eyes, trying to keep up while schmoozing for attention. Angela, her mother, makes a few calls and organizes the fridge. Between meetings, she usually finds time to plan a family meal. The house looks and feels busy.
Angela never expected Cassidy would have epilepsy. Cassidy would be so tired she’d drop, falling down stairs or collapsing on the sidewalk. She often complained she could feel tiny grains of sand in her hands and feet. It was like all of the bones in her body were suddenly lost. One Halloween, she didn’t even have enough energy to collect her candy.
“We used to get upset about her being clumsy,” Angela says. “She would cry for no reason and ask us to stop her. It drove her nuts.”
These were seizures, they just didn’t know.
When the seizures started, a neurologist told her family to look for epileptic symptoms. Then they saw the disorder through his eyes. He was right. After this, she was tested.
Cassidy has complex-partial seizures. Her mind zones out for minutes, she can’t even be brought back by pinching her skin. She comes back confused and hazy.
Two years after being diagnosed, Cassidy remembers sitting on the couch with her mother watching commercials for cancer research. “Why isn’t there awareness like that for epilepsy?” she asked her mom.
She wanted to create a day where people could come together. Maybe within the 50 million people in the world who had the same disorder, someone felt just as alone. The Epilepsy Association of Nova Scotia helped develop Cassidy’s idea, sponsoring and launching it internationally. Cassidy learned to mature quickly. She called and emailed dozens of politicians, sponsors and donors. She attends meetings, does podium speeches and accepts awards.
Planning an organized day and fundraising gala takes all year with help from her mom and sponsors. In 2008, March 26 became Purple Day. More than 75 countries hold Purple Day events. Every year she reaches more and more people.
People who have been diagnosed know her journey. Purple Day’s cause continues to grow. In the summer of 2015, she visited Japan to discuss ideas for their Purple Day events. Cassidy wasn’t a normal tourist. More than 20 Japanese people greeted her with held-up signs reading “Welcome Miss Cassidy.” She went to visit kids with epilepsy in hospitals.
Angela wouldn’t call Cassidy famous, but definitely “well-known in the epilepsy world.” She receives dozens of emails and messages on the Purple Day Facebook page. People have asked to adopt her. They’ve sent her marriage proposals. One church group offered to “save Cassidy from her sins.” Cassidy shows her mom a lot of messages beforehand to check if they’re safe.
Some messages are terrifying. A convicted Halifax pedophile contacted the Facebook page. Knowing who he was, Angela called the police. At the time, Cassidy was a minor. The man claimed he didn’t know who ran the page. He can’t have any contact with the family or the Purple Day page again. There is an open case file on the incident.
After many different messages, the family erased their last name and where they live from social media. Family friends have slipped up, accidentally revealing information on casual Facebook photos. Most of the community where she grew up knows her and keeps quiet.
One morning last summer, Cassidy woke up with dried blood in the corners of her mouth and a spilled bladder. The inside of her lips and tongue were ripped open by her teeth. Angela called her neurologist in a panic. Cassidy never had seizures in her sleep, let alone ones that looked this awful.
Angela hung up the phone. Bad news. Cassidy had her first tonic-clonic, also referred to as a “grand mal” seizure. This type is more severe. Her body loses all sense of consciousness, jerking rapidly and rhythmically at her elbows and knees. After a few minutes, the jerking stops.
Cassidy was in the kitchen when she heard the news. She had enough. Her back hit the fridge and she slid to the floor. Tears poured down her face. Beet red, she sobbed into her hands, hating her body. Why would she never be okay? There was always a problem with her health.
Angela crouched down beside her. She begged Cassidy to let it all out. “It’s okay to feel all of it, scream and swear,” Angela said.
Cassidy was afraid of what would happen if she had a tonic-clonic seizure at school, if she lost her bladder in front of people. She looked at her mom. “Swearing isn’t going to help anything,” she said.
For a parent, seizures can be just as scary. Cassidy’s seizures affect her memories. She only knows details of her seizures from her parents telling her stories. They try not to say too much, as this might upset her. Other memories happening before or after a seizure can be lost for weeks. Or they don’t come back at all.
The worst situations are family reunions. Cassidy walks into a room of relatives and sees unfamiliar faces. People tell her they’re related, reminding her of memories they share. She doesn’t remember. More than once, she’s had to leave. It’s stressful not knowing your own past.
Cassidy has never focused on things she can’t do. “I’ll never be able to drive, but I see that as safer,” she says.
It’s never too late to add a little splash of recklessness. Every Monday and Wednesday Cassidy aims for bull’s-eyes. She loads arrows into a metal plated bow with ease. She stands in a parallel line with three other archers, shooting. She pulls her right arm back and puffs up her chest. One, slow breath in; the arrow’s gone. It just misses.
Cassidy pauses for a minute and stares at her arrow. She’s the oldest archer and a year more experienced. Her competitive attitude doesn’t eliminate her playfulness. She ties up her bangs on top of her head like a unicorn horn. All the archers laugh at their missed targets, gathering around and pulling arrows from the wall made of foam and phone books.
Cassidy keeps shooting. Her failed arrows make her sharpen her focus. In spite of the cold, she straightens her posture. She’s unaware of the rough bowstring reddening her forearm with continued slaps. She fights through the cold and trains hard.
At the end, her body feels frozen. On top of epilepsy, a connective tissue disorder causes her to seize up in the cold. Her doctor thinks it may be Ehlers-Danlos, a syndrome affecting her skin, ligaments, cartilage and blood vessels. Before an official diagnosis, more tests need to be done. Archery helps strengthen her muscles.
Thin pieces of plastic rest on her knuckles, giving her fingers the ability to bend. Without these rings, her joints stretch away from her palms and remain stuck. The overall pain is sharp, like memories of her brother poking her with corners of a piece of paper.
She could be anywhere, at any moment, and the pain forces her to pause. It can happen in the middle of conversations. Cassidy grows silent with a frown. She twists and bends involuntarily into different shapes, like a contortionist.
This doesn’t stop Cassidy from doing what she loves. She’s tried many different hobbies. She loves walking fashion runways and being in front of the camera.
Sports sneakers and jeans are traded for strappy five-inch heals and cleavage-baring bodysuits. At runway practice, Cassidy stands in the background, covering her half naked body.
“I only wear this kind of thing for fashion shows,” she says, looking down and holding her coat closed. “It’s way too revealing for me.”
When it’s time for her to walk, Cassidy’s face beams. The shy girl flicks a switch, bringing out bold confidence. At the end, her hand is on her hip. She practices pacing up and down the runway, posing. Not only is modeling fun, it brings her inner beauty to the outside.
Cassidy works with her modelling coach and different photographers to build her portfolio. To her, the world is a series of connections. She shakes hands with as many people as she can, hoping they can collaborate on a humanitarian project. Cassidy never gets paid to walk in a show and never asks. A kind heart and willingness to help others stems from her difficulties.
At home, around 1 a.m., Cassidy is awake. She’s staying awake for the entire night. After spending a couple hours on the couch in front of a glowing computer screen, she starts getting drowsy. She’s preparing for a sleep deprived EEG the next morning, a test detecting abnormalities in brain waves. She takes this test once every six months to a year. Her mother, Angela, stays up with her every time, making sure Cassidy doesn’t fall asleep. Hopefully, lack of sleep will induce a seizure during the test. This helps her doctor figure out where the seizures are coming from in her brain, and why. She hasn’t had a seizure yet during an EEG, so the neurologist keeps trying.
Cassidy and Angela decide to sit at the kitchen table and play Jenga, hoping a game will keep them awake. They take turns carefully pulling the wooden blocks. It’s Cassidy’s turn. The stress of tipping the misshapen tower makes her poke at the sides and middles of each block with a timid finger. She picks a block from the middle and slowly pulls. The entire thing wobbles from side to side. At the very edge of the block, almost free, the tower comes spilling down towards her. She frantically puts her hands forward, hoping to catch stray pieces.
All Cassidy and Angela can do is laugh at the mess. They’ve been laughing all night, avoiding thoughts of possible seizures. Cassidy stays positive, telling jokes. She saves them in her phone so she won’t forget the funny ones. Angela has made a list of things to do ahead of time to keep their minds busy in the sleepiest hours. Six hours later, ten jars of homemade mixed berry jam were flipped upside-down, cooling on the kitchen counter as they left for the IWK Health Centre.
The EEG testing room is painted with bright, exaggerated circus animals. Ann, the lab tech conducting Cassidy’s test, says this makes the room a more welcoming space than white hospital walls. She measures Cassidy’s head all the way around with a compass, like a circle on a math test. Cassidy sits patiently and waits, twiddling her fingers.
Ann applies thick glue to spots on her scalp and moves Cassidy to the hospital bed, where she lays down underneath a thin sheet. Electrode wires are attached to the glue on Cassidy’s scalp. She falls asleep within minutes, so overtired she snores. Ann watches a video camera and computer-monitored test connected to the wires.
About five minutes into the test, Cassidy’s body starts to twitch. Ann and Cassidy’s mom watch the movements in silence, trying not to wake her while she’s in a deep sleep. The twitches continue, one every couple of minutes. Cassidy wakes up on her own ten minutes later with a full body twitch. That’s okay; Ann was going to wake her up anyway.
Ann switches the test by pulling a light directly over her head and flashing it on and off. This was the worst and final part. It feels like staring directly into the sun. No seizures today. Cassidy’s eyes water in defeat; the test is over.
The neurologist, checking the EEG results, notices the twitches. He discovers she has to switch to a stronger medication. This reminds Cassidy she has to deal with epilepsy for the rest of her life. Though her health always seems to be getting worse, she’s constantly thinking of ways to make the world more aware.
One day, Cassidy hopes to be a phlebotomist, a health worker who does blood testing. Then she can help others with health problems. The busier she is, the less she thinks about seizures.
For the rest of the day Cassidy is drained. She scratches at her scalp on the way home, trying to peel away the sticky glue left by the electrode wires. Her father has to drive her and her mother home on his lunch break and doesn’t have the extra fifteen minutes he needs. He moves in and out of lanes, speeding a little, to save time.
Cassidy stares out the window at the blurred city buildings and people on the sidewalks. She lowers her head on a small cooler: the rest of her father’s lunch, uneaten. She drifts in and out of sleep. She stays awake until she is safe at home and can curl up with Dexter, the dog, on the couch. Angela believes he can sense the stress in Cassidy’s body and lays on her. After tests and seizures, he stretches out along her back. Moments like this make the pain feel farther away.