A young mother pieces together a past slowly being erased by seizure disorder.
By Nicholas Fouriezos | For the AJC
Corks didn’t pop from champagne bottles the night before. No plastic banners welcomed the dawn of a new year. No trash cans groaned under the weight of paper plates from party guests departed. All the lights in the Greensboro home had been turned off long before midnight.
It was the morning of New Year’s Day 2014, but for the Brown family it was just another day. Until it wasn’t.
Blair Brown was making coffee in the kitchen of her Greensboro home. Then the 31-year-old brunette stopped. She did a double-take over her shoulder, as if she’d seen a bird fly by. She spun in a circle once, twice, maybe three times, a blind pirouette as her eyes glazed over and the world turned black. She crumpled to the floor, bashing her head against the cold granite counter, her skull bursting into a bloody mess.
The sound of the crash echoed through the quiet house. Her husband, Jim, rushed to catch her but was too late. He held a shirt to the blood spouting from his wife’s head, her mouth, her nose. He shouted for help, telling their 5-year-old son Benjamin to call 911. Before the sirens came, Jim tried to comfort the boy while Blair lay writhing in his arms.
Look, there are going to be fire trucks and ambulances and they’re going to come here, but they’re here to help. So don’t be scared.
After three violent, full body grand mal seizures and multiple hospital stays in Greensboro and Athens, Blair’s body finally finished ravaging itself.
Her recovery was just beginning, but her mind was erasing itself. With each convulsion, she lost another memory. And with each memory gone, she lost a little bit of herself.
Morning light filters through the multicolored curtains in the kitchen window. Huddled on the couch, Blair, now 32, flips through a red photo album titled “Destinations.” She goes here to remember what she’s forgotten, or at least to try.
“All I go by is pictures,” Blair says, as she leafs through the thin plastic slips.
Blair was diagnosed with epilepsy her freshman year at the College of Charleston in South Carolina. After staying up all night while packing to go home to Myrtle Beach for Christmas break, she had a seizure in front of her three roommates. At first her mother and step dad assumed she had suffered from a common college ailment: partying too hard. It seemed like nothing, a fluke. Over the next decade, just a handful of seizures followed.
But in March 2011, the new mother started having ear-splitting headaches. Nurses told her she was just stressed. After all, Benjamin was a toddler at the time and what mother doesn’t lose her mind in those years? Sleep, they said, was what she needed.
So she tried to rest. Two weeks later, she woke to find the ceiling was on the floor. Her vision had flipped. This time the doctors had a diagnosis. Her left vertebral artery, which carried blood to that side of her brain, was dissected — the blood flow was cut off. Blair had suffered a stroke.
She was rushed to the Emory Stroke Trauma Center. Medical students huddled in her hospital room, poring over her brain scans and wondering how she had survived with so few physical side effects. There was no paralysis, no loss of speech, just the pretty, athletic woman who looked like any other mother of a preschooler.
The only lasting effect was her fading memory.
Blair is still picking up the pieces three years later, one photo at a time. With a cup of coffee in hand, Jim explains each picture from the armchair next to her. Their 10-year wedding anniversary was coming up and she was asking about the big day.
“This is our wedding rehearsal dinner,” he says, pointing to a picture of them dancing. He flips the page to a photo of him smiling with his groomsmen.
“Look, Blair. This is the wedding day.”
“Where am I?”
Blair still has grand mal seizures; her brain short-circuits from what scientists call disorganized electrical activity, causing her to convulse violently and pass out.
Cooking is now dangerous and driving is out of the question until she can reach six months without an episode — a benchmark she hasn’t met. The three seizures on New Year’s Day 2014 were her worst yet and she believes they wiped away more memories than any before.
In another photograph, Blair and her mom pose in front of a wedding cake. The next is from the wedding reception, where the couple entertained family and guests in South Carolina.
“Blair, this is us leaving the reception in the convertible. Do you remember any of this?"
“You don’t remember the red convertible?”
How we got the story
While covering a series of state medical marijuana hearings, Nick Fouriezos became entrenched in the daily struggles of families with seizure disorders. In November, he attended a screening of the film “Growing Hope,” where Blair Brown and her husband, Jim, were present. After hearing Blair explain her situation to the crowd, Nick became fascinated by her and her family’s daily battle with her physically traumatic disorder and fading memory. He spent time with the Browns in their Greensboro home, at a weekly family gathering in Milledgeville and at Athens Regional Medical Center when Blair was hospitalized with severe headaches. The Georgia Legislature is expected to vote on medical marijuana legislation this session, which is expected to end in early April.
Suzanne Van Atten
Personal Journeys editor
Always on guard
Jim is more than just the memory keeper for the family. His whole life has become focused on keeping his wife safe.
One day about year and a half ago, Jim lost sight of Blair for just a couple of seconds.
She had recently been released from the hospital after a rough spell, and Jim thought it might be fun to go take pictures of one of the pools built by the company the couple had started together. It was something Blair, who handled the company’s photography and graphics work, had always enjoyed doing.
Jim stepped around the corner to turn on the pool pump, and when he returned he saw Blair’s seizing body beneath the transparent blue water. He fished her out and breathed her back to life. There had been no time to call an ambulance.
It’s hard for Jim to think of anything but Blair’s safety these days. When they are in separate rooms at home, he calls out to her every few minutes — making sure she’s still conscious. He moved Benjamin’s bedroom downstairs so she wouldn’t have to use the stairs and risk a fall if she had a seizure on her way up or down.
Blair can’t even take a bath alone, so Jim stays close by. Opportunities to expand their business into South Carolina and Tennessee were passed up. A partner was brought in to pick up the slack while Jim attended to hospital visits or worked from home to watch over Blair.
Plastic bags full of medical bills clutter an upstairs room and occupy Jim’s mind. He sorts through two bound seizure journals filled cover to cover with meticulous notes, a daily record of the family’s strange new normal.
“My purpose is to try and make life as safe as possible,” he explains softly.
- Blair Brown talks with her mother-in-law during a Sunday visit. Photos: Brant Sanderlin / firstname.lastname@example.org
- Blair Brown helps her mother-in-law cook a Sunday lunch. Brown suffers from recurring grand mal seizures that erase her memory and threaten her life.
- Blair Brown holds her son, Ben, during a visit with her in-laws.
- As a result of her seizures, Blair can no longer remember Benjamin’s birth or his many firsts — first words, first steps, first laugh.
- Blair depends on photographs, many of which she took herself, to try to piece together her lost memories.
- Blair Brown suffers from recurring grand mal seizures that erase her memory and threaten her life. The 32-year-old mother is hoping Georgia lawmakers will pass a bill this session that would legalize cannabis oil, which could help alleviate some of her symptoms.
- Blair and her husband Jim pray before a Sunday lunch at her in-laws’ home in Milledgeville. The family gets together every week in a ritual that helps ground Blair, whose life is often cast into a chaos by her seizure disorder.
- Blair and her husband Jim Brown on their wedding day at Pawley’s Island, S.C., in 2004.
- Blair Brown suffers from recurring grand mal seizures that affect her memory and threaten her life. During one seizure the 32-year-old mother fell into a swimming pool. Her husband saved her life by performing CPR.
- Blair and Jim Brown fell in love on a trip to Africa.
- Blair with Maasai Mara tribesmen in Kenya in 2002. It was on this trip to Africa that Blair and Jim fell in love.
Remember that these are the parts Blair forgets:
Painted Faberge eggs that ornament a tabletop, each from a country she visited but no longer recalls.
Two jobs she worked through college to fund her travels. Her study abroad in Florence; the semester her junior year she spent in Africa. How Jim — she calls him Jimbo — followed her to Africa and they trekked together through the desert with little more than their hiking boots and the packs on their backs. It’s a mystery to her how they sailed from coast to coast on a dhow or how they fell in love while climbing Mount Kenya and watching the sunrise unfurl from 17,000 feet.
The first words of her only child, Benjamin. For that matter, the entire list of her son’s firsts, from his earliest steps to his tiniest laughter. She took thousands of pictures those first three years of motherhood, before the stroke, and they serve as her only record of that time. Jim assures her that she was a good mother — still is.
Remember that memory is two parts. One fact, the other emotion. Even though Blair knows all these things happened, she struggles to evoke feelings related to the experiences she no longer remembers. Sometimes she doesn’t know where real memories begin and where she’s filled in the gaps with stories from others.
What she’s been told sounds true but feels like hearsay.
“All I go by is pictures.”
A ray of hope
To help reduce the frequency and severity of her seizures, Blair begins her mornings with a dose of Clonazepam, a drug with side effects that range from slurred speech and drooling to hallucinations. Her nights end with Vimpat, which can cause depression and dizziness.
“I’m like a zombie and just — I’m not there,” Blair said. “I feel like it’s better for me to have seizures than be on all this medication.”
But still she takes the drugs, and still she has dozens of micro-seizures a day. She calls them “twitches,” and they impair her mental acuity.
There is new hope for people who suffer from seizure disorders, although it is not without controversy.
Many believe that cannabis oil made from marijuana is an effective treatment for seizure disorders.
Rep. Allen Peake of Macon is sponsoring a bill to legalize cannabis oil this legislative session. Last October in Dallas, he hosted a screening of “Growing Hope,” a film promoting medicinal use of cannabis oil that focused on three Georgia families whose children suffered from seizures. The room was packed with legislators, advocates and families of seizure-stricken children. Afterward, Peake opened the floor to questions.
Blair rose unsteadily, shaking in the dark shadows cast by the velvet drapes of the Dallas Theater.
“How are you going to help people like me?” Blair asked, her voice cracking. “It’s easy to get this through for children, but it’s very hard to explain it for adults.”
Jim had driven them almost two hours to the meeting in part to meet others with seizure disorders. But there wasn’t anyone like Blair in the sea of children and harried caregivers.
Under the current version of the bill, the oil would only be allowed to contain a small percentage of THC, the psychoactive component of marijuana. That might be fine for children, but Blair worries the medication won’t be potent enough to help adults like her, who weigh more and require stronger doses.
About the reporter
Nick Fouriezos is a reporter from Atlanta who interned on The Journal-Constitution’s politics desk for seven months in 2014. He’s also worked on the Baltimore Sun sports desk and St. Augustine Record news desk. A recent graduate of the University of Georgia, Nick currently is working as a freelancer while hopping through the many islands of Indonesia.
A woman approached Blair after hearing her speak. She was the mother of a teenager who had just been diagnosed with epilepsy. Would Blair be willing to talk to her?
Of course, Blair said, and gave her Jim’s business card with their phone number. For the first time, she was beginning to tell her story. Jim thought it could be motivational. Blair wasn’t so sure, but she was willing to help.
“It has that stigma,” Blair said later, contemplating the potential treatment. “But if you can take the oil and be more productive, it’s a no-brainer.”
Living in the moment
Thin plastic tubes snake around Blair’s wrist, pumping a drug-laced cocktail of pain relievers and seizure deterrents. For the last three weeks, she had a constant severe headache. She hoped it would go away but it didn’t.
After decorating the house for Christmas, including two fake trees and one real one, she couldn’t take the pain any longer. Jim took her to the hospital. Three days later, Blair was still at Athens Regional Medical Center, stuck in a partial seizure, often screaming and crying in pain.
About the photographer
Brant Sanderlin has more than 20 years’ experience as a photojournalist, including 14 at the AJC. He shoots a variety of assignments, including front line action during the Iraqi war, sporting events, breaking news and human interest stories. He grew up on the family farm in eastern North Carolina.
Despite the sterile heat that fills the dark hospital room, Blair clutches two blankets to her chest and wraps another around her double-thick wool socks. A nurse rolls in a wheelchair. The doctor wants one more EEG, a scan that measures brain activity. For a patient like Blair, it is used to detect early seizure indicators. She protests, but knows it won’t do her much good.
In the Neurodiagnostic Laboratory, Blair lies down and loosens her hair bun. A nurse uses cotton swabs to dab a lotion called lemon prep on her head. It smells like oranges and leaves red stains behind. The nurse asks questions as she applies the lotion.
“Do you work?”
“No, I am not able to.”
“Do you go to school?”
“No, but I love that you think I do.”
The nurse places cotton balls on the sticky material. She attaches dozens of sensors to the cotton. To track potential seizure activity, doctors have to induce them. Blair closes her eyes. A square, black box hangs over her.
With a shuttering sound, the box begins to emit a bright flashing light in staccato bursts. The nearby monitor screen looks like a note ledger that tracks each changing brain wave.
If she clenches her jaw or squints her eyes, the chart spikes. For 25 minutes, each new frame resets the one before. Peace is erased for chaos.
Memory works in mysterious ways. Every summer, starting when she was 5, Blair flew to New York to visit a childless family friend she affectionately called Grandma. Blair may not be able to remember her wedding or the birth of her child, but to this day, New York’s winding streets remain imprinted on her mind. She still knows them, Jim says, “like the back of her hand.”
Another thing Blair knows is where she will be every Sunday.
That’s when she and Jim, along with family members spanning four generations, gather at the home of Jim’s mother, Irene Miller, in Milledgeville.
It’s late November and two pumpkins greet visitors as they enter the forested driveway. Inside the home, Christmas cookies and frosting lay scattered across the kitchen table. “It seems like we’re always between holidays here,” says Irene.
Before lunch starts, Jim and Blair go upstairs. The second floor is filled with photographs and holiday cards, framed portraits of Benjamin — taken by Blair. This one shows Jim’s former brother-in-law. Another a college roommate of Blair’s she doesn’t recognize. The hallway corkboard has become a graveyard of such things.
Downstairs, Irene pours champagne as the family gathers at the dining room table.
“Dear God,” Jim’s stepfather begins, “thank you for everything you do.”
Irene ladles creamed corn onto outstretched china plates. The family begins to tell stories. They talk about Jim’s grandfather, who at 92 still works until 5 p.m. every day at his concrete company.
“That will never change,” Jim says.
They bicker and interrupt each other, led by the great grandma, also 92, whose tongue has only sharpened with age.
“If there’s anything I can remember, it’s Sundays,” Blair says. “I can forget life, but I know we’re going to be here.”
This is just one day in her life, and it is one of the better ones. From hospital stays to ambulance runs, there are plenty that are worse. Still, there are also days spent playing Jenga with Benjamin, or movie nights with Jim. Tomorrow she may remember a little more than the day before. One day soon, she hopes, she will be able to speak to Georgia’s legislators about how important cannabis oil is for mothers like her.
She will probably never be completely seizure free. But that won’t stop her from living without regrets.
“I just can’t live my life like that,” Blair says. “That’s not how any of us were meant to live.”
Presentation by Shane Harrison.