Home Grown Humanitarian

How Gary Mervis turned personal tragedies into triumph

By Deborah Blackwell

More than once, life-altering events shifted the path of Gary Mervis, a Rochester-born humanitarian whose resilience and strong dedication to help others is what drives him, even in his darkest moments.

He suffered a debilitating car accident at age 18 that prohibited full use of his left lung. He lost his youngest daughter Teddi, 9, to brain cancer.

Mervis may be best known for his two-decade stint in politics, and from what he feels is his greatest gift — founding and running Camp Good Days and Special Times in Mendon. The free residential camp for children with cancer is one of the largest organizations of its kind in the country.

“I just feel those for whom much has been given, much is expected. I have always had a feeling of wanting to make a difference in people’s lives,” said Mervis, 72, who founded Camp Good Days and Special Times in 1979. “To give something back, that’s what you do, and I learned that first from my parents. They always truly believed in helping if they could.”

It was his underprivileged childhood growing up in the city of Rochester with his brother and two hardworking parents that Mervis said first helped him appreciate the value in helping others. His father sold clothes at the Old National Clothing Company and his mother was a hairdresser who owned her own salon. They always rented home, he said, but it never pazed Mervis, who spent long afternoons at the local recreation center.

Mervis was drawn to recreation early and wanted to be a physical education teacher. But a serious car accident shortly after high school derailed that dream when his rib cage dislocated, limiting his ability to expand his left lung. With the risk of surgical repair too high, he changed his plans.

“The doctors said I couldn’t pursue physical education but I could live a normal life without the surgery,” said Mervis. “After I healed from the automobile accident and realized college wasn’t for me, I got a job as assistant produce manager for Star Supermarkets and decided to marry the girl I had been going with.”

But it wasn’t long before Mervis realized supermarket management was not his calling.

“I asked myself, ‘Gary, do you really want to do this for the rest of your life?’ and I knew the answer,” he said.

So he borrowed $180 for tuition from his uncle and enrolled in the recreation program at Monroe

Community College in Rochester. In spite of his injury, Mervis pushed forward with his dream of a career in recreation.

The summer after his first semester at MCC, he knew he was on the right path, but also knew he might need to pull some strings to secure a role working for the City of Rochester’s Recreation Department.

“In those days, recreation positions were all political,” said Mervis. “But one of my mom’s clients was the secretary with the Democratic committee, and with her help, I went to see my ward leader and got a job working on the playgrounds. I had a great summer.”

He was asked to stay on with the department permanently and was able to attend MCC in the mornings and go to work in the afternoons.

But that still wasn’t enough for Mervis — He wanted to manage his own recreation department. He took civil service exams and after graduating from MCC, enrolled at SUNY Brockport.

For three years, Mervis studied and worked seven days a week. He ran the Carter Street Recreation Center and obtained a bachelor’s degree in recreation administration and a master’s degree in urban sociology.

Then his path changed again.

Into the political arena

After attending the National Recreation and Park Association conference in 1971, Mervis received a phone call from the mayor of East Brunswick, N.J., inviting him to interview for the directorship of the recreation program there. He accepted the job. But when he realized the cost of living was significantly higher in New Jersey than Rochester, he decided to commute each week.

Camp Good Days and Special Times, founded by Gary Mervis in 1979, has served nearly 50,000 campers from 22 states and 35 countries.

For several months, Mervis drove five hours one way to work, living in a motel room each week while his wife Sheri and three children remained in Rochester. It wasn’t long before Mervis found another job in his hometown, this time overseeing Vietnam veterans returning home from war.

But it was his part-time role teaching an evening communications class at the College Cooperative Center in 1972 that led him into politics. One of his students did an extra-credit project volunteering to work on a political campaign that introduced Mervis to former New York State Assemblyman and Monroe County Republican Chairman Don W. Cook. Shortly thereafter, Cook offered him a job as his executive assistant.

“My dad said, ‘You can always find a job, but this is an opportunity that might never come again,’” said Mervis. “Here I was this guy that nobody knew. I didn’t come from a political family, yet there I was. So I changed my voter registration to Republican and spent the next 22 years working in various roles in the New York State Assembly in Albany and Rochester.”

There were times Mervis had to “pinch himself,” he said. He worked on both the local and state levels as a political strategist directing more than 75 campaigns. He was an administrative aide to Assembly Speaker and Minority Leader Perry B. Duryea, and an executive assistant to Assemblyman James F. Nagle.

Throughout his tenure in politics, Mervis’ true nature of helping others was not always dictated by his party affiliation.

“You learn there are good people in both parties, and you try to support people in both parties,” he said. “I never thought about what I would do down the road if we lost the election, so I sat on various committees.”

Little did Mervis know his time on a pediatric hospice care committee was foreshadowing his future.

To the edge

In April, 1979, Mervis learned his youngest of three children, daughter Teddi, was diagnosed with a malignant brain tumor, so he left his career in politics.

“Needless to say, whatever was important the day before, it’s not so important the day after someone you love is diagnosed with cancer,” he said. “I could have never kept the kind of schedule I was keeping with her if I had stayed working in politics.”

He became his daughter’s primary caregiver, which he said to this day was the hardest thing he has ever had to do. But it was not the nine-hour craniotomy or the eight weeks of radiation therapy following the surgery that were the hardest for Teddi or her father. It was the loneliness.

“Here is my little girl, 9 years old, trying to understand why this was happening to her. It was 1979 and there weren’t computers or smart phones. In her world, like most 9-year-old children’s world, understanding life is what you see and hear,” said Mervis. “She was the only one dealing with cancer, and I can remember her looking up at me trying to help her understand why this was happening to her. I would try to explain it then go into the bathroom, lock the door and start crying. I couldn’t help her; I didn’t even understand what was happening.”

Mervis said the cruelest part of cancer for a child is that it robs them of the childhood feeling of invincibility, the special time when we think we’re going to live forever, and he struggled with that.

It was only by chance while watching NBC’s “Today Show” that Mervis saw a story about a camp for children with cancer. He was so excited about it that he called the show and spoke with the reporter who did the story. Mervis knew then what he needed to do for his little girl. He called the physician running the camp in Kalmazoo, Mich., to find out how he could start a camp in Rochester.

“It was a relatively new concept. There were only three camp programs in the country. It was a way for the clinicians to see their patients outside of the clinical setting and the children to see their doctors outside of the hospital,” said Mervis. “But because it was specific to each child’s doctor and hospital, Teddi could not participate.”

Determined to offer Teddi an opportunity to experience something that might help her better understand and cope with her terminal illness, Mervis called three New York state facilities and learned there were over 1,100 children being treated for cancer in those three hospitals alone. That was more than enough to start a program in Rochester, and after calling on everyone he knew who had offered to help, that’s just what Mervis did.

Escape mode

Camp Good Days and Special Times is a place where children with cancer can have fun, fit in, and spend time with peers outside of treatment facilities while still being clinically supervised.

“We had no money, no staff, but we had the children. There are a lot of children who need help,” Mervis said. “Nothing we did could be associated with trying to find the answer. It was more about trying to find a way to improve the quality of life for those families at no cost to them.”

Word quickly spread through the medical community about the project and it was only a short time before Martin Klemperer, former chief of pediatric oncology at the University of Rochester, agreed to become the camp’s medical director. He stayed on for the next 27 years, and Mervis credits Klemperer with helping bring the dream of the camp to fruition.

Camp Good Days and Special Times was the first cancer camp program for children started by a layperson, and the first in the United States to also establish a program for siblings, for other children of a parent with cancer. It has served nearly 50,000 campers from 22 states and 35 countries — free of charge — and is used as a model by other child cancer treatment centers, according to Mervis.

Bridgette Merriman, 19, of Penfield, attended Camp Good Days when she had Hodgkin’s lymphoma at age 11. She loved the camp so much she wrote a speech about it for her high school English class.

“I can say with confidence that my weeks at Camp Good Days are my favorite times of the year. Gary, the Camp Good Days staff and the volunteers are completely invested in making sure campers have the time of their life, and this loving community helps restore the courage that cancer takes away,” she said. “In a weird way I can say that I am lucky to have had cancer because it brought me to Camp Good Days.”

Although he sees many success stories, Mervis said he also never thought in his lifetime he would attend so many funerals with parents burying their children, and was struck by the pain of that. In 2010, he launched Cancer Mission 2020 — a grass-roots initiative with a goal to put an end to cancer.

“The reality is that 11,000 Americans a week are dying from cancer, the second-leading cause of death in the United States,” said Mervis. “One in four people; that’s not acceptable.”

Amy Swanson of Stafford understands first hand what it’s like to make unthinkable decisions and deal with life and death. Her son Anders has a brain tumor.

“We are so fortunate to have Camp Good Days and especially Gary as an integral part of our family. Gary fosters that safe place where kids can be kids despite the struggles and scars that cancer has left on them — socially, emotionally and physically,” she said. “I will forever be grateful to Gary for giving Anders that which I can not.”

Selfless approach

In spite of witnessing unimaginable tragedy, Mervis said being involved with Camp Good Days and Special Times has been the most important part of his life. But so was politics, and he keeps his connection to that strong. He still works 70 hours each week on his humanitarian callings, including his PAVE initiative: Partners Against Violence Everywhere, and several other affiliated programs to curb crime and violence in the Rochester area.

“For almost 40 years, Gary Mervis has turned personal loss into a labor of love that has made a huge difference in the lives of so many children and their families,” said State Sen. Rich Funke (R-Fairport). “From Camp Good Days, to Cancer Mission 2020, to the Courage Bowl, to Project Exile and more, Gary’s impact has been irreplaceable and will be felt in our community for generations to come.”

“Gary and I share the work ethic and understanding that when you are blessed you should always give back. We try to do that every day by providing important programs supporting those in need, and hope we are making the world a better place.”

Wendy Bleier-Mervis, executive director, Camp Good Days and Special Times

Mervis also coaches football at St. John Fisher College in Rochester and prides himself on being the longest member of their staff — 27 seasons to be exact.

He does find time to relax with his wife Wendy of 22 years, the executive director of Camp Good Days and Special Times, and their three dogs. They also love spending time with Mervis’ two grown children and their families, including five grandchildren.

But he’s not ready to retire and appreciates all the people who have come into his life and shared in his dreams.

“There is no limit to what we can accomplish as long as it doesn’t matter who gets the credit,’” said Mervis. “I saw that phrase on the wall of one of the hospitals a long time ago and have tried to base my life on that. We all have gifts and if we pull together we can make a difference.”

In 1982, Mervis asked writer and former St. John Fisher College professor Lou Buttino to pen a biography about his daughter Teddi in hopes it would be helpful to others. Dedicated to all children with cancer, the book, “Camp Good Days And Special Times, The Legacy of Teddi Mervis,” is a story that not only shares Teddi’s plight and honors her legacy, but helps bring the attitude toward childhood cancer and death to the forefront.

“I was in awe that a father would entrust me, someone he barely knew, with such a personal story,” Buttino said in the book’s introduction. Currently a professor of film studies at the University of North Carolina, Wilmington, he said writing the book was a life-changing experience.