Rising above personal pain, Rockford native Tom Zuba uses his own experience with grief and tragedy to comfort others.
When it comes to the subject of death, Elisabeth Kübler-Ross, M.D., wrote the book. Literally. The psychiatrist authored the groundbreaking On Death and Dying, which made her the expert on a subject most try to avoid.
Tom Zuba has become somewhat of an expert on death, too, although he never meant to be one. He’s been learning to live with heartbreak since the untimely loss, one by one, of his young daughter, wife and eldest son.
Rather than wallow in self-pity, Zuba uses these experiences to help others to work through their own despair. Today, the 54-year-old is a grief guide, motivational speaker and author.
“We all want to be accompanied through the grief journey,” he says. “Elisabeth Kübler-Ross changed the way we look at death and dying. I want, literally, to change the way we accompany people as they learn to navigate their own grief journeys. I want to assure them that it’s going to be OK, that they’re not alone.
“I have been in the deepest, darkest, most frightening pit that words cannot describe. Not once, not twice, but three times. I can’t describe it. I feel like I’ve been totally stripped bare, but I clawed my way out three times. I searched for something different, out of total desperation.”
Born in Chicago, Zuba moved to Rockford when he was 3. He first experienced loss at age 6, when his infant brother, Daniel Patrick, died unexpectedly, from an undetected heart defect, on the night of his baptism.
As a young adult, Zuba graduated from Northern Illinois University in DeKalb and taught special education in Rockford for two years, before moving to Arizona, then Los Angeles. In time, he found his way back to the Midwest, settling in Chicago.
It was there that Zuba met wife Trish (Trici), a colleague at the American Cancer Society, where he worked as a fundraiser. They married in 1985, settled into the suburb of Oak Park, and celebrated the birth of their first child, Erin, four years later. Their happiness was short-lived, however. The 18-month-old died suddenly in 1990, from a disorder called hemolytic-uremic syndrome, which occurs when an infection in the digestive system produces toxic substances that destroy red blood cells, causing kidney injury.
His daughter’s death left the normally rock-solid Zuba shattered, confused and angry. “My foundation was destroyed,” he says. “Erin taught me how to love, and I loved being a family. After she died, I had no way of knowing if there was a light at the end of the tunnel.”
In 1991, the couple welcomed son Rory, then son Sean in 1995. In 1999, when the boys were just 3 and 7 years old, Trici, 43, died suddenly on New Year’s Day, from protein C deficiency, a condition she was born with but had never known about. Four months later, Zuba was invited to share his story on “The Oprah Winfrey Show,” with The Seat of the Soul author Gary Zukav. “When my wife died, I knew I would survive,” Zuba says. “I had done this before. This time, I knew there was a light at the end of the tunnel.”
But it wasn’t easy. To escape the constant reminders of loss that were all around him in his Oak Park home, Zuba packed up his two boys in 2000 and moved to northern California, to find a new beginning. Together, the father and sons enjoyed the beauty of the West Coast, until Zuba felt a calling to return to Rockford, to raise his boys near family.
In 2004, with the family settled into new surroundings, Zuba’s world was rocked again. Two days after starting the seventh grade, Rory began experiencing seizures; he was eventually diagnosed with a brain tumor. Despite the treatments he received in the best facilities across the country, and the prayer vigils held by classmates and strangers alike, Rory died in February 2005.
The easygoing boy – who had enjoyed explaining Einstein’s Theory of Relativity to his father, who had devoured Shakespeare, who had stayed awake late at night, contemplating weighty world issues like overpopulation and famine – was gone at 13.
“Rory was the most kind, loving human being,” Zuba says. “He was an old soul.”
Despite his anguish, Zuba refused to surrender to his grief. He had been down this lonesome road twice before and each trip had made him stronger. “This time, I was able to observe my journey and not feel victim to it,” he says. “This time, I learned so much about grief, about mourning, about the gifts of denial. This time, I realized that I could consciously participate in my own transformation. This time the grief tunnel was lit.”
For the past nine years, Zuba and Sean have shared a cozy Frank Lloyd Wright-style home on Rockford’s northeast side. It has a smattering of photos and other keepsakes but is by no means a shrine. Zuba calls his home “sacred ground,” a place of serenity, where he tends his garden and enjoys his vast book collection – mostly self-help and history titles.
His main priority is raising Sean, now 16. Despite losing his mother, brother and sister, Sean’s a typical teenager who participates in school activities and plays football and baseball. “As Sean has gotten older, he’s begun looking at the events differently,” Zuba says. “He’s wiser, more sensitive and mature for his age.”
Zuba is busy, too, working on a self-help book about navigating the first year after a loss. He pens a column for Caring, a national health magazine; manages his website, tomzuba.com; and shares his message with a variety of community groups, including health care professionals.
“Tom has a unique perspective,” says Amy Kroos, R.N., a member of the OSF Saint Anthony Medical Center Nursing Ethics Council, who hires Zuba to speak during annual conferences. “He was part of the medical system, with three family members being cared for, so he understands what families are dealing with. He is very warm, compassionate, and has a way of helping people at whatever stage they’re in. That’s not easy to do.”
Perhaps Zuba’s greatest impact, however, is made via social media, where more than 1,200 people have come together on his Facebook page, facebook.com/tomzuba1, to share hopes and fears with one another. One of his followers is Sylvia Markley of Rockford, whose two eldest children, Ken and Phil, were diagnosed at an early age with Duchenne muscular dystrophy, which rapidly attacks voluntary muscles. Phil died in early 2011, just four days shy of his 23rd birthday.
Homebound with 25-year-old Ken, Sylvia has struggled to cope with her sorrow. While she’s never met Zuba in person, she’s found encouragement and friendship on his page, and says that knowing his site is “just a click away at 3 a.m.” has saved her life.
“Tom has been through so much, but the way he’s been able to deal with it gives others strength and hope that we can get through it, too,” she says. “You don’t have to know someone for them to make an impact on you. Tom has been a beacon of light through the darkness.”
This year, Zuba marked the 21st anniversary of Erin’s passing. Rory would have turned 20. And thoughts of Trici are never far away.
“We minimize the impact the death of a loved one has on us,” he says. “Death is a life-changing experience for all of us. I say we should have two funerals – one for our loved one and one for ourselves. A part of us dies with the death of someone we love. What we all have in common, when someone dies, is that we lose the dream we had for our lives. It requires incredible strength, courage and perseverance to be willing to create a new dream.”
Zuba has created just such a dream.
“I feel grateful, because my work is all about life,” he says. “We’re each able to create new full, joy-filled lives as we learn to live with the deaths of the people we love.” ❚