Every night, Linda Green battles with a decision that most of us take for granted. Should she wear her nightgown or her clothes to bed? Because, no matter how often or how professional the emergency health-care professionals are when they respond to her 911 call, it's always embarrassing to be found in a state of disarray both during and after a seizure. Then there's the issue of getting home again once she's released from the emergency department, which is harder still if she's wearing just her pajamas. "My nightgown is shorter, and with all these male firemen who often get here before the ambulance, even though they're professionals, it's still not nice to be found that way."

Green was about eight when she was diagnosed with nocturnal epilepsy. The seizures start just before, during or while waking from her sleep. "My parents were totally supportive, but when I was a child back in the '70s, that was a hard time because of the stigma and the potential for rejection. But they did everything they could to protect me from being hurt. They became very light sleepers."

Green describes her seizure disorder as terrifying. The seizures begin with an aura - a warning of what is about to occur. The fear she'll injure herself or even die is always present as the seizure takes total control of her body.

"When I was a child, my sister and I had twin beds. Mine was next to the wall, and I'd be awakened by the aura and my signal (to my parents) was three knocks on the wall. They would come racing down the hall and, if I didn't lose consciousness, I'd hear the fear in their voices... They'd hold me and comfort me and do whatever the doctors told them to do to help me," she says, wiping tears from her eyes.

While she's lived quietly with her seizures for almost four decades, she now wants to explain her condition and to describe just how terrifying the seizures are. "It's definitely not over when the shaking stops. There's a post-nocturnal phase where you're confused, you have a headache and you feel like somebody has beat the stuffing out of you. My muscles hurt and, cognitively, I'm held back. It's like my brain has been insulted and it's trying to rebound. And, I even used to apologize for my seizures as a child because I thought that I was causing too much trouble." She says people tend to minimize the effect seizures have on a person. "They feel helpless because it's not pretty to look at."

For Green, having a seizure disorder goes well beyond the physical aspects of epilepsy. Yet the disorder is misunderstood by many, including health-care professionals, she says. There is no accident to point to as its cause, no brain tumour or abnormality on a CT scan or MRI.

"People talk to diabetics because it's a major change in their life. If someone is hurt in a car accident, they recognize that they have to mourn what they lost. So in any other illness, the emotional repercussions are recognized. But if you have a seizure, they think it's all over with."

Green is grateful to her counsellors and her neurologist, Dr. Abayomi Ogunyemi, for supporting her through every step of the way. While her seizures have increased greatly over the last year and a half, it's now been six weeks since she's had a seizure - the longest period in nearly two years.

Being seizure-free means not having to deal with paramedics and fire personnel watching as she staggers around, feeling helpless, trying to comprehend which pant leg goes where. There's still the fear, though, at bedtime that her bladder may not be empty. Incontinence sometimes occurs when people have a seizure. Again, it adds to the embarrassment, she says.

Green now wears a Lifeline pendant around her neck. The monitoring system comes with a home-unit with two-way voice communication. It's a piece of security that she's come to rely on, as one push of the button means help is on the way.

Two years ago, Green retired for medical reasons from her position as a court reporter with the Supreme Court of Newfoundland and Labrador, Trial Division where she worked for more than two decades. It's a job she loved dearly and one that gave her an opportunity to travel throughout the province. Green's tremendous contribution to the province's justice system was acknowledged by a letter written by Hon. Derek Green, chief justice of the Supreme Court of Newfoundland and Labrador, Trial Division. The letter, which she's since framed, is proudly displayed along with other souvenirs from her working years. It reads, in part:

Green wipes tears from her eyes as she recalls the years she spent working for the justice department. Doing so made her feel both normal and needed. "I had one of the most supportive employers in the world. They were all very kind and went above and beyond. They backed me to the hilt and gave me the utmost respect."

These days, Green spends her time at her computer, and she also knits. She's written numerous articles in which she articulately expresses her feelings about epilepsy. In one paper, she wrote:

Spending much time in front of her computer, Green has begun writing a book about her life experiences that she one day hopes to publish. Since she no longer works, doing so gives her a sense of purpose.

"My doctor tells me I have many skills, despite being on numerous medications. My record (of being seizure-free) was five weeks, but now it's six. You build up your security over the weeks. "But if, God forbid, something would happen tonight or tomorrow, it would be like toppling off the mountain of safety and having to start climbing back up all over again."

Danette Dooley, The Telegram, March 28, 2005

People with epilepsy should never discontinue anti-epileptic medications or make changes in activities unless specifically advised to do so by an attending physician.

Remember, keep all medicines out of the reach of children, never share your medicines with others and use medication only for the condition prescribed.