Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=226457
Story Retrieval Date: 9/30/2014 8:52:02 AM CST
Mara Goldman had every reason to think she’d be acting for the rest of her life.
Since she was six years old, she’s been in Chicago singing, dancing and memorizing lines onstage and behind the camera. Her dream was to play Maureen in “Rent,” her all-time favorite musical that she’s seen some 24 times.
But memory loss due to epilepsy changed her stage, making advocacy and helping others an important part of the new script life brought her.
Goldman can no longer remember dance combinations in choreography. Blocking escapes her and even one liners in a commercial can be too much. She last performed in 2007, cast as Ellen in “Miss Saigon,” her second favorite musical.
"What's for sure, and the hardest part of why I can't see myself doing anything else, is the passion that's inside me,” Goldman said of acting. “It's my heart and soul and what I'm good at.”
Goldman, 40, was diagnosed with epilepsy, a neurological disorder that causes repeated unprovoked seizures, in high school after she had a convulsion.
She used to take more than 10,000 pills a year, causing her to develop osteoporosis in addition to triggering moods changes, she said. She developed hyperacusis, a disorder characterized by hypersensitivity to sound, as a result of her first of three brain surgeries. She’s lived through years of daily seizures.
Now, she’s in another new phase of her life, characterized as a shift from the old Mara to the new Mara as she calls it. She’s been seizure free since 2011 and her pill count is down to one seizure medication a day. “It’s amazing,” Goldman said. “I’m not having seizures. It’s hard to believe.”
Seizures happen when multiple neurons, the basic communicators in the brain, misfire. Goldman’s seizures started and took place in the temporal lobe, according to her neurologist Dr. Elizabeth Gerard at the Comprehensive Epilepsy Center and Women’s Neurology Center at Northwestern Medicine. This part of the brain located between the temples and cheekbones on the side of the head is also in charge of memory, hearing and emotions.
Her original diagnosis was for partial complex seizures, which start in one area of the brain and cause loss of consciousness depending on how far they spread, Gerard said. If the seizure spreads to the whole brain it can develop into a full-body convulsion, what most people associate with seizures. But Goldman’s seizures were not often full-body. Goldman said she’s had under five convulsions. Instead, they were usually unnoticeable unless you knew what was happening.
”I would multiple times in conversation say I’m having one,” Goldman said. “I’d say I need water and I didn’t even need water. I said the exact same thing the entire time.”
She would also get lip smacking and what she calls cotton mouth, an extreme case of dry mouth, which is a typical reaction to her typical temporal lobe seizures.
“During the seizure Mara’s feeling was that she’d just had this sort of rising sick feeling in her stomach. She felt nervous, a cotton mouth as she calls it.” Gerard said. “Those are not typically symptoms that people associate with seizures, but they’re actually very common.”
In fact, 70 percent of people diagnosed with epilepsy as adults or teens have this type of seizure. Because they are not symptoms people would expect, this type of epilepsy can often be misdiagnosed as an anxiety attack, or as ADHD in children, Gerard said.
“My kind of epilepsy is not obvious. You can’t see it unless you have a convulsion, so I’d much rather have that, but if I was having them [convulsions] I would have been diagnosed earlier,” Goldman said, which could have been a game changer.
Though doctors don’t understand all the effects multiple seizures have on the brain, there is a pattern of cognitive problems, Gerard said. “We definitely think that it can disturb biochemistry,” she said. “Particularly with temporal lobe epilepsy like Mara has, patients are much more likely to complain of memory problems.”
This is because the hippocampus, the memory center of the brain, is housed in the temporal lobe. Having ongoing seizures can affect the ability of memories to encode or stick in the brain not only during seizures but generally, because of abnormalities over time, Gerard said.
Goldman’s hippocampus also showed a scar called mesial temporal sclerosis, associated with fever-related seizures in childhood. When found in people with temporal lobe epilepsy and proven as the cause of epilepsy, this lesion can make people better candidates for epilepsy surgery. In general, surgery becomes an option for people whose epilepsy can’t be controlled through medication, like Goldman’s.
“It’s not absolute, “ Gerard said. “ All we know is this is a certain marker that is associated with good outcomes when we do surgery.”
Goldman’s first surgery in 2005, where doctors removed a part of the temporal lobe, was considered a success because it controlled the worst of her seizures, Gerard said. She was having sleep problems which they discovered were due to seizures. Goldman also had auras almost daily, sometimes up to seven times a day. Auras are the beginning of the seizure that happens in a really small part of the brain, and are often mistaken as being separate from the seizure, Gerard said. In fact, they are small seizures.
After carefully reviewing her MRI, doctors found another small area of tissue they could remove and did so in 2011. That surgery stopped all the seizures and auras, giving Goldman a new start. Goldman had a third surgery that same year to drain spinal fluid that accumulated outside of one of the layers that protects the brain.
To enhance her quality of life, Goldman is meeting with Dr. Jennifer Medina, a clinical neuropsychologist at Northwestern’s Neurobehavior and Memory Health Clinic and the Chicago Center for Cognitive Wellness.
Medina helps her work on coping with any difficulties she may have, specifically memory and mood.
“We do know there is a relationship between depression and anxiety, stress and how the brain functions,” said Medina.
She has helped Goldman put structures in place to keep her functioning at her best. Goldman regularly texts her friends when she’s having trouble remembering and writes things down immediately.
“You have to be supported with this. It’s hard and it’s not funny,” Goldman said. Though many people compare her situation with forgetting where they put their keys or what they need to buy at the grocery store, it’s more than that. “People can’t understand. This is daily. [With] the scraping of utensils, the sound, I’ll lose my concentration. I can’t expect people to understand if they don’t know how it feels.”
She may never remember moments such as her father’s funeral when she was 21, but she’s not alone. “'I can’t believe you don’t remember that,’ - my friends would never say that. They’re family,” Goldman said.
They answer her late night texts and help her put her life into perspective, to “frame it,” as one of her closest friends Brad Kisner puts it. Kisner, a graphic designer and dean of instruction at Harrington College of Design in Chicago, first met Goldman while auditioning for a community theater show and said he knew automatically that they’d be friends.
“I remember being so impressed by her ability to sing and she’s just so positive, so fun,” Kisner said.
Roughly 15 years later, he and others have been by her side through surgeries, recoveries and more. He’s one of the people who visited her in the hospital and drove her when she couldn’t, a difficult thing for Goldman who said she considers herself very independent. She has been living on her own in Chicago since she was 19.
“After watching her in the hospital, it solidified to me her strength and how through this she could affect people,” Kisner said. “It’s inspiring.”
Seeing Goldman in the hospital was hard for Kisner who hadn’t had to deal with something like this before, he said. He’s since overcome his complete avoidance of hospitals.
“I’ve said to her, Mara, you have the ability to affect change in people. Even if people don’t understand, you need to share this,” Kisner said. “Your gift now is to help people.”
Goldman has been working to bring awareness since she was 16, if not earlier, she said. She’s always carrying flyers, pins or bracelets to hand out and never misses a moment to keep people thinking about the disease. She even posts a fact a day during the month of November, Epilepsy Awareness Month.
“People make fun of me because I liked purple before. I’m obsessed, but it happens to be that color [for epilepsy] too,” Goldman said.
Between foot and hand modeling, which she does to keep herself in the industry and able to pay rent, she spends much of her time speaking with others diagnosed with epilepsy and their families.
“Lots of parents have found me and I don’t even understand how, on Facebook,” Goldman said. “They don’t even live here and we talk every day. They all say to me it’s so different talking to someone who gets it. I feel like I’m that person.”
Though she doesn’t look like she has epilepsy and hasn't found anyone who completely understands her situation, her experiences have given her a way to help others. That means educating the general public as well.
“People don’t know,” Goldman said. “You can’t see that I have anything wrong, but especially you can’t see the anger and the emotional part of it.”
Looking back in her journals now, Goldman sees evidence of her seizures sprinkled throughout, sometimes as daily occurrences. “I write things like, ‘I’m having this feeling again. I keep getting a weird taste.’ It gives me shivers,” Goldman said.
She’s working to share what she went through to make living with epilepsy easier for others and perhaps prevent them from repeating some of her harder moments.
“Mara shows a lot of resilience and strength because she's been through a number of surgeries and she’s really motivated to be her best self,” Medina said. “That’s a really neat process to be a part of.”
Goldman isn’t ready to leave her passion for acting behind and still hopes to find a way of continuing in the industry she said.
“I really don’t know of anything that would be fulfilling. How would you feel if you could never do what you love?,” Goldman said. “But I’m so much better, I need to be thankful.”
For now, she’ll keep sharing her story like an open book and singing her favorite song, “Take Me or Leave Me,” from “Rent.”