D&Sdocs: Outliving an MS Prognosis

Video and story by André Beganski

Joe de Cubas has lived in the same Manhattan building for nearly half his life. In 1983, after he was diagnosed with multiple sclerosis, he moved to an apartment in a brand new building on 1st Avenue near NYU Langone’s Tisch Hospital, in the Kips Bay neighborhood, where he would be treated. At the time, de Cubas was told he had no more than 20 years left to live.

After 35 years of battling MS, de Cubas has long outlived his prognosis. In 2017, he was forced to sell his apartment to finance his medical treatment; he now rents the same apartment.

Nevertheless, at his building, de Cubas is a community fixture. Soon after moving in, he became the first president of the building’s board of directors and a mediator for tenants.

As his illness has advanced, de Cubas’s building has become his world–though not always a comfortable one.

In 2000, not long after resigning from his position as head of the board, De Cubas’s condition deteriorated quickly. First, he began to lose his ability to walk and limped with a cane.

A year later, de Cubas was in a motorized wheelchair and got into a dispute with the board when he asked the building either to build a ramp or construct a wheel chair lift for a staircase in the lobby. The building repeatedly denied his request; at one point, the building’s board suggested that de Cubas hire someone from a nearby gym to lift him up and down the lobby stairs. Instead, de Cubas relied on caretakers and security guards to do the lifting anytime he needed to leave or reenter his building.

Only after pleading his case to a city agency was the building informed that, by law, the building was required to construct and pay for a lift. “It just wasn’t the friendliest building,” said de Cubas’s caretaker, Rosario Coyne.

Coyne came into his life in 2002, when de Cubas still had control over his upper body. Today De Cubas requires around-the-clock nursing that is not covered by his insurance. When de Cubas didn’t have enough money to continue paying for his care, Coyne took a pay cut. “It’s a shame, in my mind, that somebody has to spend all their money on their care and sell their home,” she said, referring to the sale of his apartment.

More recently, de Cubas has been able to rebuild his relationships in the building. One of his regular visitors is 6-year-old Chiara Bucouy, the daughter of the current board president. “Joe and Chiara have a very special relationship,” said Michelle Bucouy, Chiara’s mother. “They met each other and just clicked.”

De Cubas also has been fortunate to build a support network of medical professionals. Alexander McMeeking began living in the same building as de Cubas in 1992. He’s a physician at Tisch Hospital and makes house calls to de Cubas whom he has known for nearly 30 years.

It is the support of his community, as well as the care he gets from helpers like Coyne, who have kept de Cubas alive even though he has been bed-ridden for over 15 years, according to McMeeking. “He’s got a tremendous heart, great cardiovascular system and nothing but the will to live,” says the doctor.