When Grief Becomes a Superpower

In the summer of 2012, Maria Kefalas’ world came crashing down.

At the age of two, her youngest child, Calliope, was diagnosed with metachromatic leukodystrophy (MLD), a rare and progressive genetic disease that severely impacts one’s cognitive and motor abilities and leads to premature death.

Doctors said that Calliope, or Cal, as her family calls her, only had a few years left to live — that Kefalas and her family would never see their daughter grow up. That summer, Kefalas and her family started making plans for Cal’s funeral.

But the heartbreak didn’t stop there. Her father, father-in-law and late husband, Pat Carr, Ph.D., former Saint Joseph's faculty member, were all diagnosed with cancer that same year.

“I was really lost, and I was in this state of anticipatory grief,” says Kefalas, Ph.D., a professor in the sociology department. That grief consumed her whole being, particularly in the first year following Cal’s diagnosis. Kefalas was in crisis mode, and to this day, she has no idea how she survived it.

But Kefalas started to see that there were two ways she could handle her grief: either keep it close and let it control her or find a way to use it to change the world.

Kefalas describes this perspective on grief and how it transforms her in her new memoir, “Harnessing Grief: A Mother’s Quest for Meaning and Miracles,” published by Beacon Press in 2021. Through detailed accounts and candid recollections, Kefalas tells her story of being a mother to a child with a terminal illness and shares the hope and possibilities she and her family found in tragedy and loss, including raising funds to support research on leukodystrophy and gene therapy, a promising treatment technique that could prevent the disease.

“Once I realized that you can tame grief — not conquer it, but tame it — by telling your story, I was able to get outside of my pain and harness it to do good things,” she says.

From Blogging to Writing a Memoir

It wasn’t easy getting to that point. Kefalas even thought she would never write again after Cal, who is now 11 years old and continues to receive hospice care at home, was diagnosed with MLD.

But a year later, she found herself sharing what she was going through on a blog under the name “The Recovering Supermom.” She regularly shared it with a few friends, and it became a way for her to process her real-life nightmare.

Kefalas also published a piece in Slate for Mother’s Day that year. In her essay, she talks about the lessons she learned mothering Cal — from cherishing every single second she spent with her child to the importance of checking in on friends with sick or special needs children. It went viral.

It was at that point when she got the idea to turn her blog into a book. She had a newfound compulsion to tell her story, “like the movie ‘Aliens,’ where the monster bursts out of people’s bellies,” she says with a laugh.

But while Kefalas had written academic books, from an examination of the rural brain drain to marriage and motherhood among young, low-income women in cities, it was her first time tackling a memoir.

“I was very fortunate to have an agent and a publisher to pitch it to, but I have to admit, it was a pretty bad pitch,” she says. “The blog was pretty much a primal scream. It was very raw, angry, intense.”

Kefalas says it took a long time to find a voice that was immersive without it being too overwhelming for the reader.

“I also tried to be funny because I do have a sense of humor, so I had to find a way to inject that in a way that worked,” she says. “It was also challenging to choose which stories would be in the book and create a narrative arc from them.”

Discovering the Superpower of Grief

One of the main concepts Kefalas explores through the events in her book is using grief as a superpower — a realization she had after conversations with Peter Clark, S.J., Ph.D., the director of the Institute of Clinical Bioethics.

A few months after Cal’s diagnosis and Kefalas’ return to work, a colleague suggested to her to see Clark. As a bioethicist who specializes in neonatology, Clark advises doctors and families with children who were born with severe disabilities or illnesses on the ethical challenges of making decisions about treatment.

“Maria really wanted to do what was in the best interest of her daughter,” Clark says. “She felt she needed some ethical background before deciding on how to proceed with her daughter’s care.”

In one of their meetings, Kefalas says Clark told her the wisest thing anyone has ever said to her. It was also the only thing that comforted her during that time, she writes in her book.

“He said, ‘If you have the courage to be around children like your daughter, children who are dying, they will teach you the very meaning of life,’” Kefalas recalls. “Even then, in my crazed state, I knew that was important and useful. I kept coming back to it.”

It soon became clear to Kefalas that a lot of the good in the world resulted from people who have gone through terrible trauma — from the organizers of Mothers Against Drunk Driving, who helped dramatically reduce the number of drunk driving accidents in the U.S., to the families of the Sandy Hook Elementary shooting victims, who advocated for gun violence prevention.

“I realized I can use the pain and heartache I felt, harness it like this force of energy and do things that were supposed to be impossible because, when the worst thing happens, you have nothing left to be afraid of,” she says.

And so the ideas for how Kefalas and her family can help others with children who have leukodystrophy came flowing.

Inspired by the late cancer patient Alexandra “Alex” Scott and her lemonade stand, Cal’s brother, PJ, suggested selling cupcakes to raise awareness of MLD and help doctors find a cure. They raised $9,000 at their fundraiser in 2013, which helped fly families to Milan for an ongoing MLD gene therapy trial, a suggestion made by Amy Waldman, M.D., Cal’s neurologist at the Children’s Hospital of Philadelphia. The fundraiser also paved the way for the Calliope Joy Foundation and Cure MLD, advocacy organizations that were co-founded by Kefalas and Carr.

“I was struck with the fact that I had witnessed miracles, but I realized that people don’t really understand them,” Kefalas says. “You have to work really hard for miracles. That’s something that really motivates me — seeing a lot of remarkable things but also recognizing that there’s so much work left that needs to be done.”

Kefalas shares other stories of the seemingly impossible, including helping establish the Leukodystrophy Center for Excellence at CHOP. In 2015, clinical research studies in leukodystrophy — particularly in gene therapy — were showing great promise. Kefalas immersed herself in the research, connected with doctors and scientists to learn more and advocated for more resources and support for families. Waldman and Brenda Banwell, M.D., chief of the Division of Neurology at CHOP, knew it was the right time to create the Center.

“The Center was really born out of the fact that families needed additional medical and psychosocial support. The community really needed us to rally around newborn screening and other emerging therapies,” Waldman says. “So, we knew we needed to start thinking broadly about where the field was going and put together a program that would really address the advances that were happening in the field.”

Today, the Center is a multidisciplinary program with numerous clinicians dedicated to families with children who have leukodystrophies, including neurologists, pediatricians, physiatrists, genetic counselors, physical and occupational therapists, speech and language pathologists and nutritionists. The Center is also currently involved in numerous research studies exploring and evaluating specific leukodystrophies, including MLD. Waldman says that progress wouldn’t have been possible without Kefalas and her family. They also raised $450,000 from selling 50,000 cupcakes to support the Center, and got Jim Kelly, former NFL quarterback of the Buffalo Bills and fellow advocate for leukodystrophy research, to attend their first gala.

“Although [Kefalas’ family wasn’t] our first leukodystrophy case, there really was a fundamental shift in how we approached these disorders and how we supported affected families because of them,” Waldman says. “We’ve been able to grow and expand our clinical and research programs to help so many more leukodystrophy patients. And what Maria has done for this community in helping others — even through her suffering — is an incredibly selfless thing to do.”

Meanwhile, Clark says it’s amazing to see how far Kefalas has come since she first came to see him. He recognizes the impact she’s had on her community, the medical field and the lives of families with children who have MLD.

“She’s been a leader in the pediatric area of dealing with children who have genetic anomalies. She has courage, she’s not afraid to state her opinion and she’s not afraid to challenge others in how they form their opinions,” Clark says. “She’s an inspiration, not only to other parents who are struggling with this, but also to the medical profession. She’s taught us a great deal, and she’ll continue to teach us.”

Entering Her Second Act

Seven years after pitching her memoir to her agent and publisher, Kefalas is excited to finally share it with the world. She’s also looking forward to infusing her experiences and what she has learned into her work as a sociology professor.

Kefalas says she was fortunate to be able to take a sabbatical from the University in 2019, allowing her to finish the book. During that time, she was also able to look at her experiences from the lens of a social scientist.

When she returned to campus in the fall of 2020, Kefalas taught medicine and healthcare policies and other topics from a very intimate perspective. Her class, called Sociology of Medicine, gave students the opportunity to rethink healthcare and medicine as they know it.

The first exercise she had with her class was an introduction to narrative medicine, a burgeoning field that looks at the human side of medicine through storytelling. It was the most impactful teaching she’s done, she says.

“I find myself in my second act, discovering healthcare and medicine as a topic of study and coming at it with a combination of my training as a sociologist and my experiences as a parent and an advocate,” Kefalas says. “I’m really excited to take all of that and continue bringing it to the classroom.”

Micah Castelo is a web content editor at Saint Joseph's University.