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Amy Ofenbeck
Amy Ofenbeck at her home in Fort Myers, Florida
On the days she exercises, Amy Ofenbeck will make her way out to the boat garage that she and her husband have converted into a home gym. As the light streams in from the windows, she’ll step on the treadmill and slowly start to walk, a limp noticeable. The doctors told her to work on her form, so she’ll set the pace only to 1.7 mph. After 13 minutes she’ll move to the recumbent bike and pedal for another 10 minutes. She’ll repeat the routine three times. By the end, she’ll be breathing hard but feeling fulfilled. She always loved working out. The routine is different now. But the challenge is still there.
She was coming into the prime of her life—a newlywed with a rising career in television news. Then, everything changed.
An aneurysm had ruptured in the brain of Amy Ofenbeck. She was in a position many others face after surviving such a debilitating health setback. Everything is seemingly different. How to respond? Not just on the day after the surgery to save your life. But on the day of your eighth surgery. Or the day you realize you can no longer do the job you love. Or the day you realize you have to do something about the terrible thoughts that poison your mind.
Brain Matters: A True Story of Survival is about how she responded. She went from being on-air talent at ABC7 in Fort Myers to barely being able to walk or speak after the ruptured brain aneurysm almost killed her. Almost two decades later, she still feels the aftereffects. She details in her book her difficult journey with her changed life.
“There are a lot of people going through some major health crisis,” she says. “I’m hoping people can read my story and see if she can survive, so can I.”
A native of the Midwest, Amy Van Patten rose in the ranks of the TV world to become an anchor at a station in Southern Illinois. There, she met her soon-to-be husband, Todd Ofenbeck, who stuck to the behind-the-camera work at the station. They moved to Fort Myers in part to be closer to Todd’s father, whom they called Daddy O. They were enjoying Florida life, both working together at Waterman Broadcasting (which owns ABC7 and NBC2). She finished up a story on wildlife rehabilitation that day—July 15, 1997—and headed to her all-women’s fitness center. A self-described gym rat, she was there most days. She was lifting weights when it ruptured. She sat down on a weight machine, a splitting headache stopping her movement. Then she collapsed. As she learned later, she went unconscious, her eyes rolling into the back of her head.
At the hospital, Todd arrived and learned that his wife had a 50 percent chance of surviving. In the early morning hours, he came in and started talking to her, holding her hand. He told her to squeeze his hand if she was hearing his voice. She squeezed. Todd made up his mind: She would survive.
She had suffered an aneurysm near her brainstem. Blood had filled the space surrounding her brain. She was lucky to have lived, doctors told her. But she couldn’t talk above a whisper. She couldn’t walk. She was having difficulty with her memory—at one point in the hospital, she didn’t even recognize her parents. She started having trouble seeing. Migraines came and went. In old photos, she looks thin to the point of fragility—her hair shaved off for the surgery. But in most, she still has a smile.
She started therapy—physical, occupational, speech. She felt she was on a path back to normal. “I really didn’t think my life changed that dramatically,” she says. She thought she could return to normal. But after such a devastating setback, “normal” becomes something different.
She had her passion for exercise, so her outpatient physical therapies weren’t so bad. But recovery was laborious. Words came slowly. Steps came slowly. It was a challenge even to make something like macaroni and cheese.
She was still speaking in a whisper because of her damaged vocal cords. She eventually saw a specialist at the Vanderbilt Voice Center who put in an implant so she could speak like she once did.
Progress was being made. She was getting a life back. She met with her former boss, and they agreed that she could get back to reporting. But her job was much more difficult now. She struggled to come up with story ideas. She was passed over for an anchor job she would have been perfect for before the surgery. To make matters worse, she had to go back for additional surgeries. She couldn’t get back into the old rhythm of a job she once lived and breathed for. The news director eventually sat her down and told her an uncomfortable truth. She just couldn’t make it as a TV journalist anymore.
Life got worse. She found work at a fitness center, but her mind wasn’t right. She was having delusions. She imagined conversations that didn’t happen, meetings that didn’t occur. She thought everyone was turning on her—her husband, her parents. She thought the worst: They wanted her dead. Out of their lives. Was her husband trying to force her to take pills? Were her parents looking to cash in a life insurance policy? The questions drove her into hysterics. Her husband took her to the ER.
She was near her bottom when Dr. Frederick Schaerf stood bedside in the hospital. She didn’t trust him at first, but over the days, she warmed to the neuropsychiatrist’s presence. He told her that when a cyst in her brain had been removed, it had left a hole. The physical change was having severe affects on her mental well-being. She needed to be on anti-psychotic medication. She struggled with that. She would have to be on these meds for the rest of her life. But this was her normal now. And it wasn’t something to be ashamed of. Schaerf told her something that’s stuck with her: “We create our own stigma by hiding.”
She decided not to hide.
“What’s helped her the most through all of this is one thing—her spirit,” Schaerf says now.
She continued her rehab. She worked out every day in her home gym. The daily cocktail of medications balanced her moods. She was never one to sit still, so she continued to seek out work. She volunteered. She got involved in programs like Special Equestrians, which helps people with disabilities by putting them on horseback. But this new normal didn’t come easy. She fatigued quickly. She suffered short-term memory loss. She bounced from job to job until 2004, when she discovered Goodwill offers work for those with disabilities. She started as a volunteer and then was hired for a public relations position.
She’s still there, at the Goodwill on Tice Street, working for a few hours at a time. For all her determination, a full-time job is too taxing. She takes copious notes and carries around a tape recorder to account for her memory loss. But that’s fine. That’s her normal now. She’s thankful she can walk, even though it comes with the aid of a cane. She can still go out and about, but she’s cautious because at times she’ll forget where she parked the car. A good day is when she can go to work for a few hours and come home to work out. A bad day is when she just needs to sit alone because the pain in her neck and back is too much.
She credits close friends and family for helping her through the tough times—especially her husband. Caregivers often get overlooked in these situations. But they need to be there to be the rock—to provide support but not promote codependency. To be sympathetic even when their own frustrations trouble their mind. “I have my bad days,” Amy says. “But Todd’s patting me on the back, saying ‘Tomorrow’s another day. You’ll get through this.’”
Like his wife, Todd has learned that life is different now. Even the little things are different. Nights out may be an early dinner at a small restaurant they’re familiar with. Or, a night out turns into a night in watching Netflix with their two dogs. “We learn to live with it,” he says. “We deal with setbacks and victories. You get used to being different. You adapt.”
Brain Matters (co-written with frequent Gulfshore Life contributor Dayna Harpster) is brief, largely drawn from blog posts Ofenbeck kept. It’s not meant to be a best-seller. But her story is out there—including the pain, the disillusionment, the disappointment. It’s part memoir, part roadmap for anyone finding a way to live with disability.
How did she respond to crisis? By not pining for the past and living the life she has now to the fullest.
“Amy went to a place where no one wants to be,” wrote family friend and former co-worker Craig Wolf in the forward to the book. “But she occupies it with grace, a smile and fierce determination all of us want to possess.”