ED AND ROBYN Schaffer of Pikesville have had some of the most trying nine months of their lives as Ed, 60, has been living with brain cancer. But out of this trying time, the couple is feeling immense gratitude as the community has stepped up to help in a major way.
Last spring, Ed was diagnosed with glioblastoma, an aggressive and incurable form of brain cancer. A large portion of Ed’s brain tumor was removed last July, but his physical abilities have been declining, requiring that he receive assistance during most of the day.
The diagnosis and surgery came during a transitional period for Robyn, who was looking for a job. Her first day of work was July 9, only one week after Ed’s surgery. To make sure he would be taken care of during work hours, Robyn created a page called Ed’s Helpers on signup.com, a project management website where members from the community can sign up for shifts, two hours each, to hang out with Ed and provide whatever help necessary.
Since the page became active, the help and support for Ed and Robyn has been copious. Robyn calculated that between July 26, 2018, and Jan. 31, 2019, 37 volunteers have dedicated 588 hours.
The helpers come from many different circles including fellow members of Netivot Shalom synagogue, friends from Ed’s long-distance bicycling cohort and a group of musicians who have played old time Appalachian music with Ed over the years.
Despite Ed’s failing health, he’s managed to play the fiddle as recently as last week.
“He’s been in bed for two weeks now, and hasn’t left bed for anything,” Robyn said. “But last Sunday he was feeling good and he helped him into a chair and he played. On Monday we propped him up in the bed, and he played”
Ed, still a jokester, could be heard in the background saying, “I didn’t play as well as I would’ve liked.”
Both Ed and Robyn have maintained their characteristic positivity during this difficult period. Robyn says Ed’s happiness rubs off on her.
“I’m blown away. Ed’s body is failing him in so many ways, but he’s like ‘I’m good with it,’” she said with a laugh. “He’s not cranky and nasty. And if he’s happy and joyful, then I can be.”
Of the 37 helpers, Brian Berele, Ed’s closest friend for 25 years, holds the record. Berele has volunteered for 48 sessions, but hardly considers the visits an obligation.
“Visiting Ed is an easy mitzvah. He’s pleasant, he’s a nice person and he’s my buddy,” Berele said. “I just hang out, and we talk. If he’s up for it we play music or listen to music. We’ll listen to The Who from the 1960s or 1970s and get in our time machine and go back. It’s a visit with a friend. Ed’s illness has not robbed the Ed-ness from him. He remains the person he was.”
For Berele, the mitzvah is reminiscent of a message from the book of Job.
“When bad things happen to good people, you do not philosophize about the nature of place on earth,” he said. “When someone is hungry, you feed them; when someone doesn’t have clothes, you clothe them; when someone is sick, you comfort them. That’s what my Judaism is.”
Ed, who worked for eight years as a contractor for CHAI, an agency of The Associated: Jewish Federation of Baltimore, started having problems with his vision last spring. He first noticed it while driving, as he couldn’t see vehicles to his right in his periphery.
Ed tested his vision in a safer setting, a Shabbat service at Netivot Shalom where he tried to determine if he could see the person sitting to his right. He couldn’t. Once services ended he approached a member of the congregation who is a physician to describe his symptoms.
“Don’t be silly, go to the hospital now,” Robyn recalled one congregant telling Ed.
“When someone is hungry, you feed them; when someone doesn’t have clothes, you clothe them; when someone is sick, you comfort them. That’s what my Judaism is.” — Brian Berele, Ed’s friend of 25 years
Ed’s initial visit to the hospital was during Shavuot, and the same night as the Preakness Stakes. A series of tests were taken and on May 23, doctors confirmed that Ed had a brain tumor, “primary to the brain, nowhere else in the body,” Robyn said.
Ed was scheduled to have an MRI and biopsy on July 1 and 2, but the tumor had grown significantly since it was first discovered in May. Instead of having a biopsy, Ed underwent brain surgery to remove as much of the tumor as possible. In addition to the decline in Ed’s physical abilities, his vision was also greatly impacted by the procedure.
For Ed, working with CHAI was a passion that provided him great joy. A number of the volunteers were people Ed knew through CHAI.
“I helped senior citizens who couldn’t afford their house repairs. I was a professional contractor, remodeler, and very much into home repairs,” he said.
Rabbi Elliot Kaplowitz, the spiritual leader of Netivot Shalom called the Schaffers’ positivity during such a difficult period “a reflection of who they are as people.”
“They are amazing people to be around,” he said. “They are very well-loved by everyone who knows them, and they are dealing with a pretty lousy situation. They don’t beat around the bush about how difficult it is or how trying it can be, but a lot of it is dictated based on the attitude they have. In many ways they are teaching us. Teaching everyone who is there in supporting ways about what perspective to have.”
For Robyn, that perspective includes viewing Ed’s illness as a way to bring the community together.
“He was given this illness at this time in his life because it would have the greatest impact,” Robyn said. “He’s leaving a huge positive impact that I’m grateful for.”
Ed described a sense of shock that came over him when so many community members agreed to help. He wasn’t aware of how much of a difference he’s made in the lives of others, he said. The circumstances of the realization make him a little sad, but having made the realization at all is a blessing.
“I have a level of gratitude that I didn’t have before. It’s also humbling because even if I were healthy, I can’t do it all myself,” he said. “We need one another and we need to work together. We can’t do it ourselves, and we can do tremendous good in a community with all the resources we have available to us. I’m seeing it firsthand, and I’m just overjoyed.”