Ten Years Later

by Hoda Kotb

  “It was really disturbing for me to see a seizure, knowing the physical exhaustion and the effort and the negative things that were happening during that seizure,” Scott says, “and so we were very protective of the kids about that. I don’t think we were entirely successful.”

  Diane had little control over when a problem flared inside her brain.

  “I didn’t want my kids to see me having a seizure. As a mom it just sucks. That’s what my tears were for. What am I putting my kids through?”

  Even more stressful: the possible tragic consequences of Diane’s having a seizure while she was caring for the children.

  “When I took a bath, I’d always let the family know,” Diane explains, “and whenever I took the kids swimming, I’d always have to go to the lifeguard and say, ‘My kids are fine, but you need to watch me. If my arms aren’t going, if I’m not breathing, you gotta come get me.’ ”

  They eventually hired a nanny to help Diane but still wanted to arm the kids with preventative measures.

  “My kids at a very young age had to learn how to drive a car, because if Mom seized in the car, they would have to know how to take over,” Diane says. “We lived on a ranch with a John Deere tractor, and we’d take the kids out and teach them to steer. Grandma and Grandpa would take them out in golf carts, too.”

  Diane always drove in the right lane so she could easily pull over to the side of the road if she experienced an aura. Driving became a source of tension for the Van Derens, as Diane battled for normalcy and Scott managed reality. They ultimately hired a driver.

  “If Diane says, ‘I feel okay, I can drive,’ she is an adult and she can make that decision. But if she’s driving our children, and I think her eyes are sunken and I don’t think she looks quite right in the morning, then I have an opinion about that.”

  Determined to gain more control over Diane’s seizures and their family life, the couple was constantly on the hunt for effective doctors and drugs. Prescribed medications were ineffective. Diane was either allergic to the meds or suffered from their side effects. Her seizures raged weekly.

  “Our life revolved around what Diane needed. The parts of that Diane was aware of,” Scott says, “she really resented and really did not like. She was very embarrassed when she had a seizure. She didn’t want the attention, she didn’t want to be a bother, she wanted to be self-reliant, and she didn’t want help from other people. She resented not the family, but having to be in that situation, or to have other people see her have a seizure or not be her normal fun-loving self.”

  After repeated visits to various doctors over the years, Diane was diagnosed with epilepsy—basically, another word for the condition of someone who suffers from recurrent seizures.

  “I didn’t know how to spell it, didn’t know what it was, didn’t know what it meant,” Scott says. “It was, at that time, a really big word with a very negative connotation.”

  Scott and Diane armed themselves with as much information as they could about epilepsy. Scott scoured the Internet, read books, and reached out to the area Epilepsy Foundation for guidance. They were both exhausted, drained from the combination of ordinary and extraordinary challenges. Scott was juggling his many roles: father, husband, businessman, patient advocate, and fill-in mom.

  “It’s like if your toilet’s overflowing, you gotta do what you gotta do. I was simply reacting over the years. When’s the next doctor’s appointment? How’s Diane doing today? What needs to get done?” he says. “Yeah, there were some times when you just became exhausted, but it was pretty much, what needs to happen today and what are we gonna do about it?”

  The daily uncertainty dominated the mood and focus of the entire family. No one meant to lay out an invisible layer of eggshells, but sidestepping it was nearly impossible in the Van Deren house.

  “I remember the talks with the kids. I remember the, ‘Mommy, are you gonna get better?’ The kids didn’t want to upset me or stress Mommy out because they thought if Mommy had a seizure it was their fault.” The limitations for Diane created by the seizures were extremely difficult for her to accept. As an athlete and active mom, she despised the intrusion of epilepsy.

  “Diane did not take it seriously enough,” Scott says. “I had multiple differences of opinion and discussions with her. ‘No, honey, you didn’t eat something bad yesterday, this is related to your seizures.’ ‘Denial’ might be too strong of a word. She only knew and understood what was happening in her head and she thought that was normal. For us, it was just this ever-present fog of not quite understanding everything that was happening and not knowing the way out.”

  Diane also hated taking medications, another source of tension between her and Scott.

  “Diane would get on effective meds and stop having seizures, and say, ‘Hey, look. I’m not having seizures. I don’t need the meds anymore.’ And then have a seizure. That happened probably three different times.”

  Managing the unpredictable was complicated. Everyone wanted to protect Diane; Diane wanted to live a full life.

  “Her dad would come over to the house,” Scott says, “and Diane would be working in the garden and it would be hot out, and her dad would say, ‘Diane, you can’t work in the garden! You have to stop or you’ll have a seizure.’ That was the exact opposite of what Diane wanted to do, so she’d stop, and her dad would leave, and she’d go back out into the garden and work.”

  The dilemma was that Diane’s decisions and their resulting consequences affected everyone. A seizure was the lead domino in a cascading series of kid shuffling and task reorganization.

  “The tough time was not even the day of the seizure, especially if she had a grand mal seizure; it was the day after,” Scott explains. “The recovery from the seizure would just lay her out.”

  During a grand mal seizure, the entire brain is engaged, as well as the body’s muscles, which strain and contract. In an effort to stop the seizure, the brain does too good of a job, shutting down everything from emotions to memory. While the seizure itself lasts for perhaps a minute, the brain’s busy work of shutting down and rebooting every system can continue for hours.

  “When you come out of it,” Diane describes, “you feel like you’ve been hit by a truck.”

  In 1995, by chance, Diane discovered a possible strategy for eluding a seizure. She was walking the family’s golden Labrador retriever about two miles from home. Suddenly, she felt the onset of an aura.

  “I started running home. I just thought, I gotta get home to a safe spot. And when I got home, I realized I didn’t seize. And I thought, Wow!”

  From that day forward, Diane used running as the most powerful weapon against her very worthy and wily opponent, epilepsy.

  “My thought was, I’m gonna beat it. I’m gonna beat this SOB.”

  Diane’s running shoes were never far from reach. When an aura bloomed, she’d strap on her shoes and hit the trail leading to the Pike National Forest, six miles from her backyard. Her goal was to run as long as it took to block the seizure, sometimes a two- or three-hour outing.

  “That’s where my love for long-distance running came from. I’d run for hours. The fear of the seizure was just gone. It was euphoric. It was my safe spot. It was heaven.”

  The strategy worked often, but circumstances didn’t always allow for an escape. The reality was, Diane frequently seized at inopportune moments: during a work dinner for Scott, in a crowded movie theater, in front of hundreds of spectators while coaching her daughter’s basketball team. Regrettably, the auras began to offer Diane shorter and shorter warnings. Chronic seizures, small and large, for more than fifteen years, created medical mayhem in her brain.

  The Van Derens were running out of options. Medications and multiple doctors were not providing solutions.

  “I had one doctor who told me, ‘You’ll never drive, you’ll never swim alone, you’ll never beat epilepsy, here’s your prescription,’ ” she says. “And I looked him in the eye and I said, ‘You son of a
bitch.’ And I just walked out. I kept going and going until I found a doctor that let me be me.”

  She found him in 1996. The executive director of the Epilepsy Foundation of Colorado referred Diane and Scott to Dr. Mark Spitz, a neurologist at the University of Colorado. Interestingly, Diane was not a unique case. Spitz says about a third of epilepsy patients continue to have seizures even though they are taking proven epilepsy medications.

  “She was very frustrated,” recalls Spitz. “If you take her as an individual, what was especially hard for her was that she had been a very high-functioning person. She was an outstanding athlete in high school and college, and with all of her seizures, she was afraid to go out of the house. She couldn’t drive, and to quote her, she had three kids, and her kids were mothering her; she couldn’t mother her own children.”

  Diane shared with Spitz that running was the only way she could partially control her seizures. While Spitz had seen other patients who’d developed a strategy to abort their seizures—like a firefighter who would grab his shaky right wrist with his stable left hand when a tremor began—he had never known someone to use running as a suppression tool. He calls the concept a real medical phenomenon, not just Diane’s imagination. Spitz explains that when brain cells are restful (for instance, when you are eating at a quiet restaurant or watching a movie), they are more apt to accept the invasion of abnormal electrical activity that sparks a seizure.

  “In contrast, I think what was happening with Diane when she was running,” Spitz says, “is that she would get in a specific mind set where the cells the seizure might normally spread into instead wouldn’t accept that abnormal activity. The seizure would start, but it would fizzle out. It wouldn’t go anywhere.”

  The first move for Dr. Spitz was to put Diane through a series of neuropsychiatric tests to assess her memory and brain function. Not surprisingly, based on Diane’s extensive history of seizures, the results indicated she suffered from short-term memory loss and problems with directional aptitude.

  “The part of her brain that was abnormal to begin with, that her seizures emanated from, has two main jobs: one is short-term memory, the other is processing information with regards to its emotional content,” he says. “The seizures that she’d had over the years further injured her brain, and her brain wasn’t normal because of that.”

  Spitz next ordered an MRI for Diane. The results were telling. Images revealed scarring of her right hippocampus. The doctor saw hardening and shrinkage of cells in a very isolated area.

  “The next step was that I had this hypothesis that her seizures were coming from a relatively regionalized region of her brain, and that it was a region of her brain that we could safely remove surgically, and hopefully stop her seizures and not leave her with a significant neurological deficit.”

  In June 1996, the doctor began a procedure considered standard in major medical centers around the country. He admitted Diane to Denver’s University Hospital so she could have several seizures in a controlled setting. Technicians wired up the outside of her head with electrodes so experts could monitor her brain’s electrical data during the seizures. Diane would also be videotaped seizing, since specific body movements also indicate the epicenter of a seizure.

  “What I’m interested in as an epileptologist, specifically for this type of surgery, is not how big and bad the seizures are, but anatomically where they start,” Spitz explains, “because where they start is the key to the possibility of doing surgery.”

  Diane hoped fervently for a seizure to occur while she was hooked up in the hospital. It did. When she felt the aura come on, she willed her body not to fight it, but instead to let it flow, knowing intense pain would follow. Diane’s brain generated multiple seizures during her four-day stay, one a grand mal. Diane says when she came out of it, she heard Dr. Spitz cheering.

  “He was like, ‘Yeah! We got it! We got it!’ ”

  Data revealed where in the brain Diane’s seizures were originating.

  “It was the sweetest spot,” says Spitz. “If I could have put it anywhere in her brain, that’s where I would have put it.”

  Here’s where we revisit the question posed at the beginning of Diane’s story: Why would someone possibly elect to have brain surgery? The reality for Diane was, the risks of having surgery (a blind spot in her vision, a 3 percent chance of a stroke, an even lesser chance of dying) were smaller than the risk of not having surgery. Diane could either lose a golf-ball-sized chunk of her brain or, very probably, lose her life.

  “She would have continued to have seizures, and there are good studies that tell us that continued seizures of her type would have caused her memory and other brain functions to continue to deteriorate further,” says Spitz. “The other thing is death. If you look at good statistics, the chance of dying for her as a direct result of a seizure after ten years was one in ten.”

  Diane was a mother of three, a wife, a gifted athlete, and a fighter. She’d finally found in surgery the sword she needed to slay the beast once and for all.

  “Oh, slam dunk,” Diane says. “I didn’t have any hesitation. I really and truly felt like I was at such a risk of dying at that point. You can call it radical brain surgery, but what was really radical were the three to five seizures a week. I couldn’t get it fast enough.”

  Diane’s eagerness was also driven by a stark black and white video image. Back when she was lying in bed at University Hospital, hooked up to electrodes, exhausted from a grand mal seizure, Diane asked Dr. Spitz to show her the videotape they rolled to capture her movements.

  “I had no idea. I’d never seen anyone have a seizure,” Diane says, shaking her head. “And, whew. Wow. That’s the first time I understood why my family lived in fear. I understood why my son developed anxiety in class. My oldest would sit there in his coat all day like, Is my mom okay? When I saw that tape, it was the piece of the puzzle that was missing. I was always comforting everyone, ‘Mom’s fine, don’t worry.’ But then when I saw what I looked like, I could be more empathetic. I had chunked off a piece of my tongue. I have blood running down the side of my face. You can hear me on the tape just, ‘huh, huh, huh’ [rapid breathing sounds]. I have all this blood going down the back of my throat. I’m gurgling, I’m exhausted, I’m blue. I’m just trashed. And as I come to, I’m disoriented. I don’t know who’s who. And I have a massive headache.”

  The time had come. On February 20, 1997, Diane celebrated her thirty-seventh birthday. Several days later, the night before her surgery, she had one last grand mal seizure. Diane was now just hours away from a potentially life-changing operation.

  “I remember being in the operating room and I was joking around,” Diane says, “and then I turned to see all this equipment on a table and I said, ‘Okay, time to put me to sleep.’ ”

  In the waiting room, Scott was joined by Diane’s mother, his brother, and his parents. Diane’s father had died four years earlier. The kids, now eleven, nine, and eight, stayed home with the nanny. Scott slipped away to visit the chapel downstairs.

  “I remember saying a prayer in the chapel that day”—his voice cracks—“about Diane being God’s precious lamb and not knowing the outcome. It was beyond my control.”

  The surgery, described at the start of this story, went smoothly. In terms of her prognosis, if Diane could live one year without having a seizure, she would most likely never have another. There would be one post-op complication: a blind spot that affects Diane’s upper-right peripheral vision. The other complication was accidental, caused by Diane herself. Her shunt, a tube that drains excess spinal fluid from the brain to another part of the body, was sticking out of Diane’s head bandage as she lay in the intensive care unit.

  “When I came around I was quite combative, and I grabbed that shunt and dislodged it. When I grabbed the shunt, the fluid had nowhere to go,” she says, “and I was lying there in the most excruciating pain. I was kicking and dropping F bombs. But I didn’t know. I was in La La Land. I thoug
ht everyone was hurting me. I even pulled out my IVs and took off down the hallway. They eventually strapped me down. I was in such pain.”

  After eight days in the hospital, Diane returned home. She focused on recovery and regaining the fifteen pounds she’d lost post-op. The Van Derens had hired a nanny a month before the surgery to familiarize her with the family; she stepped in to help with the kids when Diane went in for the operation. Back in her own bed and relatively rested, Diane soon began to feel the itch to run, her “medicine” for so many years. (She does not recommend this idea for anyone else.)

  “After a few weeks, I was at the house and I could hop. Just three steps,” admits Diane. “And I thought, Hot damn! If I can hop, I can run! I remember tying my shoe and holding my head. The pressure was awful, but I just wanted to get on that mountain. I knew my running was my healing.”

  The physical challenges ahead were huge for Diane, but she also faced a significant emotional hurdle. Dr. Spitz says he broaches the topic with all of his brain injury patients before they undergo surgery.

  “I tell everybody: the hardest thing about what you’re going to go through is nothing medical. What you’re going to have to do with your family and friends is to figure out where you fit in this world when your life is not dominated by epilepsy. Are you going to go to school? Are you going to get a new job? What are you going to do?” Spitz explains, “These people are often very disabled psychosocially. They’re overprotected by family and friends, and we’re gonna take that all away from them.”

  The answers to those questions for Diane lay, literally, at her feet. She hit the ground running, euphoric about the new health and life she’d been given through surgery. Only time would determine if her seizures were gone for good, but Diane felt relieved and hopeful. The “What are you going to do?” concern did not apply to her.