Humorouz

As Angel Gonzalez greeted visitors to the Philadelphia Art Museum the other day a quote played in my head:

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Gallery:

“Be kind, for everyone you meet is fighting a hard battle.”

Behind Gonzalez’ smile, as bright as the gilded goddess on the grand stairway behind him, is the burden carried by a man caring for several family members who battle a rare and genetic condition.

Called Von Hippel-Lindau disease, or VHL, it strikes only one in 36,000 people in the U.S. and riddles the body with fast-growing tumors and cysts, sometimes cancerous. Four of Gonzalez’ family members carry the gene:

His stepchildren, ages 33 and 32, raised as his own since they were children. And their children, his grandchildren, ages 11 and 7.

In 1996, his step-children’s biological father died of the disease. His sudden passing at age 28 made no sense to the family.

Gonzalez’ wife, Jackie Perez, vaguely recalls a doctor mentioning something about having their children tested. But that wouldn’t sink in for years.

Around 2015, the hard to pronounce, harder to understand disease made another appearance in the family’s life, this time uttered by a doctor talking about Jackie’s daughter, Nitza Neco.

Nitza had been in a car accident. During a scan to make sure she wasn’t more seriously injured, spots were found on her liver and then, over the next few years,  tumors, in her head, behind her eyes. A tumor on her liver was malignant. After the removal of most of her left kidney, she’s now cancer-free.

Often, her older brother, Angel Neco, would ask her, “What do you feel?”

He was concerned, of course. But he also suspected he too had VHL. He suffered through the same pains, the bloody noses that made the bathroom look like a crime scene.

“I knew.” he said.  “I just didn’t want to admit it.”

After a car accident of his own, doctors returned the diagnosis for him too. A tumor on his kidney was cancer, so was one on his nose. It seems to have spread into his lung, he’s getting more tests soon.

For a month, Gonzalez, 50, drove his stepson to the hospital for radiation. Every morning, he’d drop him off, work a full day, and then pick him up before heading home, only to do it all again the next day.

The disease is a ticking time bomb, in charge of everyone’s life, even when they try as hard as they can to reclaim some control. A family vacation to Virginia ended early in an emergency room visit for Nitza Neco. The other day, his daughter started bleeding from her nose.

On break from his post the other day, his hands trembling, Gonzalez showed me a photo that his wife sent to him of their granddaughter, Mia, with the nosebleed. For his family, it could be the new beginning of the disease that has marked their lives.

“Day by day, tumor by tumor,” Nitza said as we talked around their dining room table.

She and her brother have had to stop working, with the constant doctor appointments and tests making it impossible to hold down steady jobs. They’ve applied for disability, but were denied. They are reapplying.

So, much of the financial toll falls to  Gonzalez, who has worked for the museum for nearly 20 years, and his wife, who does housekeeping for the Marriott Courtyard in Center City. Like her husband, at work she tries to push away what’s happening at home. She concedes that her husband is better at it.

Nitza and her daughter live with them. Angel has his own place close by. But he spends a lot of his time there. At some point, he might have to move in with them, too.

Gonzalez doesn’t mind; he only wishes they had a bigger house so that they could all fit comfortably. But looking around their rented place in Hunting Park, it’s hard to imagine a cozier home, one filled with more love.

He is lucky, he says. His bosses and colleagues at the museum have been supportive, always checking in, quick to offer a break when his smile falters, or time off or flexible hours so that he can get everyone to their appointments. A colleague, Ariel Schwartz, started a fund-raising effort for him on GoFundMe.

“Truly, he is such a wonderful, funny and caring person, and he is bearing this ordeal with amazing grace,” he said. “I don’t know how he’s able to hold up.”

The museum. “My spot,” Gonzalez says, is a big reason why.

His post, at the entrance at the top of the Rocky steps is his dream job, and now more than ever, his salvation.

Many tough days have been made better by the sweeping view of the city, and by greeting visitors often fulfilling their own dreams of climbing up the steps into the museum where nearly every day they are greeted by Gonzalez. Always smiling, always kind.