Before that day at the Coastal Carolina Fair, neither Sasha Azevedo, her parents, nor her doctor knew what was happening in those moments when “the bad feeling” would wash over her. She would simply stare off into the distance, become unresponsive, and only gradually return to awareness, having lost time and memory.
It wasn’t until she was 11 years old that the storm awakened in full.
She was a happy kid walking with her friends at the fairground, giddy from the scent of cotton candy and funnel cakes, when a colorful twinkle of strobe lights caught her eye.
All at once, she was on the ground, convulsing violently.
The fact that no one understood what was happening to Sasha before that day is all too common with epilepsy, a condition that affects nearly three million Americans and between 55,000 to 65,000 people in South Carolina.
“It’s frustrating because seizures can look very different,” says Janelle L. Wagner, a clinical psychologist with the MUSC Comprehensive Epilepsy Center and an assistant professor with the College of Nursing. “Most people don’t think about staring episodes or drop attacks as seizures.”
In fact, epileptic seizures can take so many different forms and occur at so many different levels of severity that even experts can have a difficult time recognizing them. A person with epilepsy may convulse, “go blank,” begin to laugh inappropriately, or make odd gestures for several disconcerting minutes before returning to awareness profoundly tired and confused.
“If it doesn’t look like a ‘typical’ seizure, it can be harder to pick up on,” Wagner says. “That makes it harder to get someone into the right care.”
This lack of understanding of how subtle and varied in form epilepsy can be leaves many children dismissed by peers and even teachers as “just weird,” as Sasha was labeled for many years.
“People would yell at me after my staring spells,” Sasha says. “I wouldn’t even remember what happened, and they’d be asking me why I was acting like that.”
Gigi Smith, pediatric nurse practitioner and an assistant professor in the College of Nursing, Department of Pediatrics, and MUSC Comprehensive Epilepsy Center, has seen firsthand how much damage this kind of misunderstanding and stigma can do to children and their families.
“Children have trouble in general if another child seems ‘different,'” Smith says. “It doesn’t have to be epilepsy. But for some reason, it’s more acceptable to have an asthma attack or maybe get a bit hypoglycemic. When you’re shaking and stiffening on the floor, people get frightened.”
Smith adds, “This is why it is so important that we use the correct terminology. The older terms for seizures [i.e. grand mal, petit mal] perpetuate the stigma: this is a big seizure, that’s only a little seizure. There’s a kind of judgment that goes along with that. With any seizure, people lose time. They lose place. You’re having a conversation, you’re out for 30 seconds, and you may not only lose memory of the time during the seizure but also before. And when others don’t understand what’s happening to you, it makes you feel even more stigmatized, even more isolated.”
This was exactly the case for Sasha, who experienced nearly two dozen seizures a day between the ages of three and 21. Most of these were staring spells (known as absence seizures), and she would occasionally suffer generalized tonic-clonic (formerly known as grand mal) seizures as well.
“I never knew what freedom was,” Sasha says. “I never knew when the next seizure would be. It was a constant feeling of living in fear.”
That fear was understandable, given the total picture of her situation. When Sasha fell out of her seat, convulsing, during class, it was a fellow student who ran to get the school nurse while the teacher simply stood there, frozen in shock.
“But, after that, for the whole rest of the year, no one would talk to me,” she says. “I felt like, wow … these are my friends? I so wanted to win them over, to explain to them what was wrong, but they were like, ‘You’re just different.’ That’s when it hit me that maybe I would have to be friends with people who were older, who understood these things better.”
While Sasha was in school, her doctors tried to find the right mix of medications to ease her seizures, but nothing worked.
“I had to fight just to get through each day. The short-term memory loss after even a small seizure was the worst. We would have a test that day, and I would literally forget everything I studied. I would be so exhausted from the seizures I would sleep two to three hours after and wake up with a raging headache.”
Sasha’s case is not unique. Children with epilepsy may have an especially difficult time expressing to others what they are going through. Teasing and bullying from peers are all too common. Without intervention, the seizures, side effects of medications that treat the seizures, and other conditions, such as anxiety and depression, that go hand-in-hand with epilepsy can mount a combined assault on the developing person’s sense of self-efficacy and independence.
“Throughout history, the focus has been to treat the seizure,” Smith says. “But it’s important to understand that the seizure is a symptom of something going on in the brain.
“There can be issues with being able to function every day, social issues, abilities to learn, abilities to hold a job. About 80 percent of all persons who have epilepsy do just fine. But the 20 to 25 percent with very difficult-to-control seizures have a really hard time. Epilepsy and the continued stigma attached to epilepsy cause them to live on the edge of life.”
Fear, experts tend to agree, is at the root of the stigma. We want to believe that we can always be in control of our bodies, that what we do is entirely dependent on our willpower or strength of character. It’s frightening to be confronted by evidence that this is not always entirely true, by the thought that a tiny scar in just the right part of our brain could make us lose control of our bodily functions or even alter our behavior or personality.
“In our society, we very much separate mind and body,” says Smith. “For both epilepsy and psychiatric illnesses, we have to start to look at the fact that there are biological mechanisms that cause these issues.”
Further complicating matters is the fact that the causes of epilepsy are as varied as the symptoms: everything from congenital abnormalities in the brain’s wiring to head injuries that leave scars in the brain tissue.
The frustration of one failed attempt after another to pinpoint what was causing her to seize left Sasha and her family feeling overwhelmed.
Her parents, Douglas and Susanne Azevedo, did their best to make life as normal as possible for her and her two brothers. There were wonderful moments throughout her childhood: family vacations and unruffled afternoons filled with all the adventure imagination can draw into being. Simple acts of human kindness — a well-loved teacher showing her how to play Beethoven’s Moonlight Sonata on piano, her father teaching her how to use a stick shift when she was not able to take driver’s education in school (under South Carolina law, even one seizure per year can be a barrier to holding a driver’s license) — gave her hope that someday, somehow, her life would be different, even when all the evidence available at the time suggested otherwise.
“We talked about it,” Susanne says. “We began to accept that she might not ever be seizure free, able to drive, or go off on her own. We accepted that she might have to stay with us for the rest of her life.”
Then, one day in 1999, when Sasha was 21 years old, everything changed.
She was home alone, her parents and her brothers were all at work, and that all-too-familiar sense of loneliness and dread washed over her. “Nothing felt right,” Sasha says. “There was just this feeling, all around me, that this was going to be bad.”
Throughout the day, the feeling grew. “It got scarier and scarier,” she says. Finally, she recognized the onset of a pre-seizure aura, the worst she’d ever felt. “I felt like I was going to die. I tried to call my parents, but I couldn’t make my brain recall the numbers to dial. I just knew that I had to get out of the house, because I was all by myself.”
She staggered outside even as the storm began to crackle into life inside her brain. “All I remember was the vertigo. I couldn’t walk straight. I kept looking at my neighbor’s mailbox, focusing on that.” As she did, she stumbled into the shallow ditch that ran along the length of the road. For one terrifying moment, she was facedown in the ditch, where she might not be visible to passersby, her body unresponsive to her mind.
“Somehow, I made myself get up,” Sasha says. “How? I don’t know. A miracle? The seizure was already starting, and I got up.”
She crossed the road, her body slammed into the neighbor’s mailbox, and she fell again. Once she got to the door and started pounding, her ability to talk had gone away. Not that there was any need for talking; the desperation in her eyes and the shaking in every limb told the full story of what was about to occur.
That terrible day ended with her father carrying her into Trident Regional Medical Center, the nearest emergency room. Blood poured from her nose as she convulsed over and over again.
“I don’t remember any of that,” Sasha says. “They told me about it afterwards, but at the time, I just went black. I really thought that was it. I really thought I was about to die.”
As awful an experience as it was for her, the massive seizure led to a battery of tests, including EEG and MRI, which were conducted over the next several months at MUSC. Those tests finally determined exactly where in her brain the seizures were originating.
Once that was accomplished, ending the seizures by having the problem area surgically removed became a real possibility for Sasha. The risks involved were considerable. The four centimeter section of tissue in question was in her temporal lobe; an area vital for the processing of memory and language. According to Smith, surgery in the temporal lobe could affect the ability to speak, long-term memory, and hearing.
By December of ’99, Sasha was ready to take the chance.
“I expected she would be nervous about the surgery,” Susanne says. “But whatever had to be done, she was ready for it to happen.”
Once she was being prepped for surgery, however, she did confess one regret while talking with Associate Professor of Radiology and Neurosurgery Diana Vincent.
“Diana asked me why I looked so sad,” Sasha says. “I told her that I just wished that I didn’t have to lose my hair. I wore it long back then, all the way down my back, and I was sad that it had to be shaved off. She told me not to worry, that she would take care of it.”
And she did. That night, Diana stayed with Sasha, braiding her hair snug to her scalp in such a way that only a small patch had to be shaved off for the actual surgery. It was a simple act of kindness that Sasha and her family will always remember.
“Diana’s one of those rare individuals who truly sees the person underneath the symptoms,” Susanne says. “She does what she can to make things easier.”
Stephen Haines removed the small section of tissue from Sasha’s brain. Then, it was time to wait and see if that really would put an end to her seizures.
Today, 10 years later, it is safe to say that the operation was a resounding success. Sasha is a vivacious and absolutely gorgeous young woman who is highly involved in the local acting, modeling, and events-promotion scenes.
What Sasha hadn’t anticipated was just how bewildering life could be once so many possibilities opened up for her. “Before, it took all my concentration just to focus on one thing,” she says. “It took me a long time to really adapt to not having to do that.”
For several months after her surgery, she even experienced what she later described as panic attacks. “I think my brain was expecting the seizures, but they couldn’t start.”
Sasha’s next challenge was convincing the Department of Motor Vehicles that she was seizure free. She filed and refiled the paperwork to no avail.
Smith understood exactly what Sasha was facing. The MUSC Comprehensive Epilepsy Program has a great deal of experience assisting patients with transportation issues. South Carolina, after all, is not exactly renowned for its mass transit systems.
“We have a good portion of persons who have epilepsy in this state who have college degrees but are home bound because they can’t get transportation,” Smith says. “There’s all this unused talent because of this problem.”
With Sasha not only being seizure-free, but medically certified as being so, however, Smith was able to help get the transportation issue resolved.
“She stepped in and got it done,” Sasha says. “She knew exactly what they needed and she took care of it.”
Sasha got her license to drive.
“Even after that, though, it took about three years before the DMV started to relax,” she says. “I would continually have to keep recertifying that I was still seizure-free.”
Sasha will tell you how thankful she is to have been blessed with a family willing to stand by her through those difficult years and how fortunate she feels to have met a medical team that not only rid of her seizures but did so with compassion and understanding for how she was feeling.
She will tell you how in love with life she is today.
But dig deep enough in her past, ask the right questions, and it is obvious that the old hurts still, well, hurt. The classmates who turned their backs so they would not be thought of as “weird” by associating with her. The friends who would not ask her to stand as a bridesmaid at their weddings out of fear she would seize and embarrass them.
She is thankful for all that modern medicine has done for her, but she knows how much farther we have to go as a society in order to improve the quality of life for those whose seizures cannot be alleviated by surgery or medicine.
The gains have come slowly, and backsliding is all too common when it comes to access to care and quality of life issues.
November has been recognized in the medical community as National Epilepsy Awareness Month for four decades, but it wasn’t until 2003 that the U.S. Congress passed a formal resolution declaring it such.
The need for awareness, in these times of economic turmoil and ongoing debate over the state of healthcare, has never been greater. This is especially true with a condition like epilepsy, in which even something as seemingly simple as switching from one generic brand of medication to a different generic brand can have difficult-to-predict consequences. What is worse is the fact that the patient may not even know about the switch.
“Many times the bigger pharmacies will buy whatever they get the best price for and so the generic brand changes,” Smith says. “The person starts having seizures again and doesn’t know why. Then we have to play detective work.”
The Epilepsy Foundation of South Carolina closed its doors at the end of October, due to the combined loss of state funding and a decline in donations. Those in need will now have to work through local volunteers to access assistance from the Epilepsy Foundation’s national office.
It’s a stark reminder that much more work is needed to ensure that others can share in the kind of joy that Sasha has experienced since becoming seizure-free.
In the last several years, she’s been playing catch-up with life, trying to fit as much experience as she can into her time. She worked on the feature film The Notebook and later scored a gig as a magician’s assistant, travelling around the world on Norwegian and Princess cruise lines.
She is a hair model with London Hair, which has given her the chance to work with top photographers. She also serves as a model for event promotions and product marketing, and has been a background actor on the set of Army Wives.
Ask her about her hopes for the future and she speaks of New York, Los Angeles, maybe even the theme parks of Orlando, where models and actresses are always needed.
Suggest that these might be ambitions for a younger woman or that settling down would be a safer bet, and she’ll most likely laugh that infectious laugh of hers, the one that can make you feel happier just because you are around her.
“Life is still so new to me,” she says. “When you’re held back from something for so long, you have a very different perspective.”
• Epilepsy Foundation: epilepsyfoundation.org
• MUSC Comprehensive Epilepsy Program: neurosciences.musc.edu/epilepsy