Steamboat native shares stroke experience to create awareness, art
STEAMBOAT SPRINGS — It was like being hit by a tsunami, said 37-year-old Maggie Whittum, describing how she felt in the midst of massive hemorrhagic stroke.
“It’s very scary — very disorienting. You can’t recognize anything anymore. It’s like a great inescapable thing that affects every part of your life.”
She showed a photograph of the Japanese coast after the 2011 tsunami to a group of physical therapists and physical therapists in training during a presentation last week at Johnson and Johnson Physical Therapy.
- 15 million people suffer a stroke each year worldwide
- Stroke is the No. 4 killer and No. 1 cause of long-term disability in the U.S.
- There are over 7 million stroke survivors in the U.S.
- Stroke kills 2 times as many women as breast cancer each year, yet breast cancer receives 2.5 times the amount of research funding
“It’s very personal,” she cautioned at the beginning. “I might cry. I might swear.”
Whittum described the years, days and hours leading up to her stroke, which was the result of a rare disease — a cavernous angioma in her brain.
She was 33, starting graduate school and engaged — having just sent out “save the date” cards for a wedding that never happened.
“I was bold,” Whittum said. “I took all of the risks — professionally, financially, personally. I loved adventure. I loved jumping into new things. I loved fun — partying, enjoying the lighter side life, being goofy and making people laugh.”
Seven days before the stroke, Whittum and her fiancé took a photo for their Christmas card featuring Whittum in a handstand.
She was a leader — directing, producing and running an improv company. “I helped others and never needed help. I was invulnerable, independent and thought I could achieve anything.”
Growing up in Steamboat Springs, she rode horses, played ultimate Frisbee, snowboarded, hiked and learned archery. She went to Perry Mansfield Performing Arts School and Camp every summer.
Then, she left Colorado to pursue her passion in acting. She showed videos of herself performing, well aware that “your body is your whole career. It’s all about your face and your eyes.”
Whittum showed pictures of herself just days before the stroke — a gorgeous young woman with a tall, slender figure. “By Western beauty standards, I was pretty smokin’ hot,” she said with a laugh. “I had this amazing body that would do exactly what I wanted it do.”
The photos of Whittum in the weeks and months after stroke showed a dramatically changed human being.
At first, she couldn’t speak. She couldn’t walk. Her vision had gone “crazy.” She was totally paralyzed on the left side of her body. She lost a ton of weight and was on a ventilator and feeding tube.
A movie buff, Whittum figured the best way to describe how she felt was with a picture from Terminator 2 of the T1000 “pretzel man” villain — his body split apart in different directions.
“It totally scrambles you,” she said. “It shatters you as a person.”
About a month after the stroke, Whittum showed a video of herself undergoing major rehabilitation. “I hope I am much improved when I look at this again,” the 33-year-old Whittum says into the camera in a broken voice. “I love you Maggie. Take care of yourself.”
Encouraged by her sister to document her progress, Whittum showed the audience videos taken 23 days after, opening her hand, and 30 days, wiggling her index finger, and 31 days, walking with assistance.
Five months after, she was taking steps on her own. Six months after, her eyes were re-aligning. “I never thought about how the face moves or why it moves,” she said, describing the damaged facial nerve she desperately wanted to regrow.
Whittum showed images of the art she created to express the pain, numbness and loss she has felt through the recovery process. Using Barbie dolls, Whittum illustrated what the left side of her body was experiencing.
Now, after four surgeries, countless hours of physical and speech therapy and dogged determination, Whittum is walking, talking and working on her “Mona Lisa” smile.
But she lives with chronic pain, and every day is a challenge. As hard as it is to look at what was, Whittum does her best to look forward and keeps a Teddy Roosevelt quote at the forefront: “Comparison is the thief of joy.”
She’s channeled her pain and personal experience into creating awareness about what it is like to be a stroke survivor.
The terminology matters, Whittum told the group — she wants “survivor” to replace “victim.” And she wants to create more empathy about what stroke survivors face — the hopelessness and isolation, as well as shame, in going from a participating member of society to being dependent on others for help.
Her advice to the physical therapists was not to tell stroke survivors there were things they would never do — especially with constantly evolving advances in areas of medicine like neuroplasticity.
While Whittum is part of the 20 percent of strokes that are not preventable, she also wants to raise awareness about the 80 percent that are preventable. And remind others it can happen to young, healthy people like her. Strokes are on the rise among people under 45, she noted.
Today, Whittum’s big focus is on her film, “The Great Now What.” She hopes to complete the project within a year, as she continues fundraising to finish with piecemeal days of filming.
And she’s started acting again and directing and producing with the Phalamy Theatre Company in Denver, which, for 30 years, has exclusively features actors with disabilities.
It isn’t the story Whittum planned for her life, but it is her story and an inspiring one of strength and perseverance. She believes her film has the power to be “impactful and important.”
For more information, go to thegreatnowwhat.com.
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