Health care from the heart
Marian Adly (BA ’03, BS ’06) merges personal experiences in caretaking with her vision for health care
By Anastasia Busiek
Marian Adly (BA ’03, BS ’06) was set on a career in health care from the beginning. She planned to follow a pre-med track when she entered Loyola as a freshman. But she didn’t know then how personal experiences with health problems—and the health care system—would shape her life and her work.
During Adly’s sophomore year at Loyola, she was diagnosed with cancer. While in treatment at Loyola in Maywood, she began to rethink what she wanted to study and what goals to pursue in life after graduation. “We all think we’re masters of the universe until something happens,” Adly says. “We don’t realize how fragile we are. Everyone, regardless of how little money or how much political power you have, experiences vulnerability in the same way. I knew that I wanted to protect the vulnerable.”
Adly graduated with a BA in philosophy, political science, and international relations, and a BS in chemistry. After graduation, she was awarded a Fulbright Scholarship to study public health in Toronto—specifically the city’s response to the SARS outbreak. During the second year of her Fulbright program, while Adly was planning to go to China to study SARS in the context of the Chinese health system, a health emergency interrupted her studies once again. Her mother was diagnosed with cancer. “I moved home overnight,” Adly recalls.
She stayed there for a year, taking care of her mother as she underwent difficult but ultimately successful, treatment. Meanwhile, Adly’s research in Toronto had been noticed by officials in Illinois. Based on that work, she was asked to brief the Illinois Terrorism Task Force in Springfield.
“It wasn’t in my plan,” Adly says. “I wanted to go to China. But I thought, ‘God’s telling me something.’ By working here, I could stay close to my mom, share my work with my home state, and gain experience at the local level. I decided to follow the path God put me on.”
She presented her work in Springfield and was brought on as a consultant at the Illinois Department of Public Health, advocating for a bottom-up approach to public health preparedness, based on lessons from her work in Canada. She traveled the state organizing town hall meetings and engaging faith and community-based organizations.
“I don’t know why public health and private health care have taken such divergent paths when they should be more synergistic,” Adly says. “They should be coordinating and collaborating more often. I wanted to achieve that through this program.”
In 2008, with her mother’s health stabilized, Adly moved to New York City to work on a pandemic preparedness report for a United Nations conference in Egypt and to finish writing her thesis on her studies in Toronto.
Then again, disaster struck. In January of 2009, Adly’s father slipped on ice and hit his head. “My mom called and needed advice—she said he had a bad headache,” Adly says. “I made it to the hospital just in time to see the surgeon in the hallway.”
Adly’s father survived two and a half hours of brain surgery, but, a few days later, he fell into in a coma. Adly didn’t leave her father’s side. She made his medical decisions and monitored his progress relentlessly. “I wouldn’t leave him for a moment,” she says. Adly’s academic work, not for the first time, had taken on a more personal meaning.
“In Toronto, I had spoken to individuals who had made critical decisions in times of crisis,” Adly says. “I asked how they made decisions in the face of conflicting interests and agendas, how they allocated resources and determined priorities. I collected and analyzed that information for my research, but it ended up informing how I made decisions for my father—how I allocated limited resources and made decisions to protect him and keep him alive.”
Adly’s father underwent a second surgery, and, in March, his eyes slowly began to open.
“Incrementally, I saw my father reboot as a human being,” Adly says. “He would just stare ahead. I held up pictures of our family. He didn’t start making sounds until June.”
After a third surgery, Adly’s father moved to a nursing home.
“Dad’s situation was complex. He was more fragile than a baby,” Adly says. “We stayed there for six months working on his rehabilitation. I put him in bed, changed him, gave him a bed bath. I never thought I would do that for my father, but these were things he did for me when I was a child.”
Adly lived in the nursing home with her father, sleeping in another bed in his room. “I got to know the staff; they became our family,” she says. “I managed his medications and exercised him by lifting his arms and legs, which was a workout for me too. I was constantly engaging my father. Keeping him alert and supporting his recovery. For six months we did that.”
Adly had been trying to get her father into inpatient rehab facilities all over the nation, but her applications were repeatedly turned down. Finally, after multiple applications to the Rehabilitation Institute of Chicago, a vice president of the institute agreed to interview them in person.
“He said to my father, ‘follow my commands,’” Adly recalls. “Dad looked him in the eye. He said, in broken words, “Why are you commanding me? I have a degree in nuclear engineering.” Adly’s father was accepted. He spent the next month in rehabilitation.
“Our original goal in the spring was to get him home in time for his birthday on October 21,” Adly says. “We got him home October 19.”
Since that October in 2009, Adly has managed her father’s care at home. Although he is still wheelchair-bound, she says the progress he’s made has defied all expectations.
“He understands things. He still has a sense of humor. If you’d seen him years ago, you wouldn’t believe it to see him now.”
Today, Adly is focused on advocacy for caregivers and now works on ventures to improve the lives of the disabled, while still taking care of her father.
“What I’ve been doing is working on restructuring health care so that it is more accessible to individuals and meaningful to individuals receiving care like my father,” Adly says. “Health care and policy have turned into something very personal for me.”
She is also working on a series of endeavors to serve the disadvantaged and protect others from existing gaps in health care, spanning from academic to community to startup environments.
“My parents and I were homeless in the health care system,” Adly says. “Through my work, I’m trying to create a model that does what I did for my parents—where individuals and their families would coordinate care between providers, nurses, community-based services, and specialists. Health care is unnecessarily complicated, and we need a system that works for us all.”