Ten years ago, Laura Miller was a 14-year-old, high school freshman in Milwaukee, when she began getting headaches.
Doctors didn’t find a cause for concern, but three weeks later, she had a seizure and was taken to the hospital, where she was given a CT scan. She was diagnosed with medulloblastoma, a rare, aggressive childhood brain tumor. Three days later, before she could receive surgery, she was declared brain dead, due to complications caused by the pressure of the tumor.
Her mother, Susan Angel Miller, said the family was in shock.
“It was almost like she had been in a car accident, rather than that she had cancer,” Miller said. “She had just been at school; we were planning her sister’s bat mitzvah. Everything happened so quickly.”
The family was contacted by what is now Versiti Organ Network about organ donation, and Miller said she and her husband, Ron’s, middle daughter, Sara – 12 at the time – was adamant that they donate Laura’s organs. Sara couldn’t understand why there would be a question, when it would mean helping other people.
“Our rabbi said organ donation is the highest mitzvah (something that God would smile upon),” Miller said.
In the end, they decided organ donation was what they wanted to do.
As it turns out, on the day of Laura’s funeral, unbeknownst to them at the time, Trish O’Neill, a 40-year-old special education teacher in upstate New York, woke up after having received Laura’s liver the day before. And it saved her life.
“We were told later that Trish was at the top of the national transplant list,” Miller said. “We began writing back and forth anonymously, and about a year later, we all signed legal papers that would allow us to meet in person.”
They have since formed a deep bond, and Miller said they are now more than friends – they are family.
Fast forward to 3 1/2 years after Laura’s death, and the Millers were planning the youngest daughter, Rachel’s, bat mitzvah, when Susan began getting headaches.
“There were lots of emotions, because when Laura died, we had to cancel Sara’s bat mitzvah,” Miller said. “I didn’t want to have to cancel this time, so I didn’t tell anyone about my headaches.”
Ten days after the celebration, she had an MRI and discovered she, too, had a brain tumor, albeit a different type. Hers was a meningioma, a benign tumor that was removed two days later. She was told that her tumor and Laura’s were totally unrelated. But still … what are the odds that mother and daughter would both have brain tumors?
“I had an unexpectedly good recovery,” Miller said, “but I knew I had to write about it, starting with what happened to my daughter.”
She wrote the book, “Permission to Thrive: My Journey from Grief to Growth,” released earlier this year, which chronicles what the family has been through, for many reasons. No. 1 is to honor Laura and her legacy. It also discusses organ donation. She hopes to help those who are grieving, and help decrease the awkwardness for those who care about the people who have suffered loss, by sharing insights she’s learned.
“Those who are grieving don’t want pity – they want empathy,” she said.
Along the way, she also discovered the term post-traumatic growth, a hopeful, universal concept and term coined by two professors in 1995.
Basically, PTG is the idea that people can gain wisdom and emotional growth in the face of tragedy.
“Many people experience things like increased compassion and gratitude, or learn to reorder life priorities,” Miller said. “But nobody should feel guilty for growing or finding joy – and nobody should feel judged if they don’t feel these things.
“Bad things happen, it’s how you respond to them that matters,” she added. “Growth can happen. People are more resilient than we think.”
Miller now works with Versiti, telling her story as an example of the healing power of organ donation, and to help alleviate the guilt that some organ recipients feel. She advocates that not only is it physically healing for the recipient, it is emotionally and spiritually healing for the donor family.
Daughter Sara became totally committed to organ donation, and while attending Washington University in St. Louis, founded Student Organ Donation Advocates, which inspires and supports student-led organ donation education and registration efforts through high school and college campus chapters.
Miller shares her story in the book and in speaking engagements around the country, as she will at 10:30 a.m., Monday, Nov. 4, at the St. Louis Jewish Community Center’s Staenberg Family Complex in Creve Coeur, as part of the St. Louis Jewish Book Festival.
“But it’s not morose. It’s telling my story; Laura’s story,” she said.
For more information on Miller, visit susanangelmiller.com.
The St. Louis Jewish Book Festival runs Nov. 3 to 15, and is nationally recognized for its excellence and size, as one of the largest in the country. People from all backgrounds and faiths attend festival events to hear premier authors speak on topics such as history, music, politics, cooking, family, religion, sports and more.
During the 2019 Festival, more than 30 authors will present their latest titles, including two New York Times best-selling authors: novelist Pam Jenoff, with her book “The Lost Girls of Paris,” also on Nov. 4, and Dr. Michael Roizen with “What To Eat When” on Nov. 11.
The Premier Pass is $110, and allows entry to opening night and all Jewish Book Festival events through June 2020. Passes are on sale now and can be ordered by calling 314-442-3299 or visiting stljewishbookfestival.org.
