WHO WE ARE
We were at a water fountain in Central Park, New York, when Robert my youngest brother, then 5 or 6, began shaking. It was the first in a series of on and off seizures over two years that created a lifelong hurdle he was unable to overcome: He never could learn to read or write. Later, my mother would say that before his illness he was smartest of her four children.
Doctors had no medical answer for his condition. So my parents took him to a store-front church in Spanish Harlem where his “demons” would supposedly be exorcised. In 1979, my brother Peter wrote about that church visit. At the altar, a woman seemingly convulsing called Robert up to the front and prayed, “Saca le el diablo a este niño.” (Get the devil out of this boy.)
At different intervals, we all tried helping Robert. Santiago had a Harvard reading specialist work with him. No luck. Peter, an educator then in the New York City School System, sought help from a renowned literacy professor. His conclusion: “It’s the worst case I’ve seen in my entire life.” And at Mount Sinai Hospital after a battery of tests, I was told, “He’ll never be a cracker jack.”
Early on he married twice, briefly each time. No children. For more than 30 years, he was a custodial worker for the New York City Department of Social Services. How he passed the city’s written entry test, as well as how he graduated from high school, remain mysteries.
Still, over the years he surprised us with his knowledge of politics and world affairs. He became my go-topollster for predicting political races. His observations were often insightful. He once said, “Drug companies make medicines with side effects, so they can sell you other medicines for the side effects.”
His record keeping was extraordinary. He copied into dozens of notebooks dates, amounts and names of all purchases. Every line was perfectly written out. And his memory, one I would have wished for. Because of what he learned working part-time in a jewelry store, one might have thought he was an expert in silver, gold and precious stones. When we walked through his neighborhood in the Bronx, he shared a wealth of details about buildings, businesses and people we came across.
I don’t think I ever truly appreciated the extent to which he overcame his limitation. Nor did he. He would say to others, “My three brothers are the smart ones.” He was fully em- ployed, never a burden on anyone, and a model to learn from. Peter has said that some of the great teachers from the past could not read or write. They taught by example.
At our Easter Sunday family dinner in 2017, everyone noticed Robert had lost weight. Last August, Peter went to see him. He was even thinner and said he couldn’t swallow food. He seemed to be delusional. He kept repeating, “Lawyers are after me” and “The police will arrest me.” Within two weeks we concluded he needed medical attention and talked him into being hospitalized. He was diagnosed with pseudo-dementia caused by depression.
He complained about the white board in his room with his vital signs and the names of the on-duty staff. “I can’t read,” he pleaded with us. But he also shared stories of how he survived in a literate world. When eating out with others he would order last, pointing to someone at the table and saying, “I’ll take the same thing.” He would ask secretaries, friends and others to read everything for him.
His delusions grew more severe. “Everyone here is a dope addict” or “They want to steal my money,” he would say. As he slowly deteriorated, we knew there was no hope. He knew it. In his occasional lucid moments, he pleaded. “Let me die, let me die.”
On April 9th, eight months after Robert was hospitalized, my mobile phone rang. He had been moved to the emergency room once again. They wanted permission to treat him. We had decided what my answer would be this time. I gulped and said, “Do nothing,” almost apologetically. There is a wide emotional gap between knowing what to say in a “Do not resuscitate situation,” and saying it.
At the funeral services, Peter eulo- gized Robert. He called him a true teacher, a person we could all learn from. He spoke of his humanity, his generosity, and of his caring for others. It was a summing up of one person overcoming limitations and teaching us about resourcefulness and perseverance.
No one ever suspected the torment his illiteracy was building up inside him. Now I wonder how we missed seeing his pain. Often, we see without seeing.