Fully Alive

by Timothy Shriver

  But I was still puzzled. He was describing an experience of loneliness and despair but he’d come through it and landed in a place of trust and happiness. “You have to take it in,” he explained. “You have to let it draw into your heart. You have to experience it. You have to relax your mind. You have to let that darkness draw into your head to understand, you know?” There was nothing impulsive about Daniel’s take on the dark spaces and the journey to belief. He was deliberate and focused about it. He had “let it in.”

  “So sometimes, things don’t turn out well,” I said.

  “Right.”

  “Like you having cancer.”

  “Mm-hmm.”

  “That’s not—”

  “Right. I mean, I wish they would have caught the tumor on time and I wish they would have gotten that from the bladder and it not spread to my liver and lungs but it did. And there’s no turning back the clock. There’s only to go forward and I chose not to have chemotherapy because the doctor said that if it made me sick then they would stop it and then it would only guarantee me maybe two more years. And my grandmother, my dad’s mother, she had radiation and was guaranteed six months with radiation, and she only lasted six weeks. So you know, I take all that stuff into account in my head, and I prayed about it and I prayed about it. And I talked to my senior pastor at church about it and a couple other people, and then I came up with the decision that it would be best if I just relax and not done any chemotherapy and just live in peace with myself and just not do it. And after that, I was able to sleep really good, so I’ve made the right decision.”

  “But this didn’t turn out the way you wanted it to.”

  “No it didn’t.”

  “So how do you—I mean, most people—I mean, you know it’s disappointing. It’s heartbreaking when things, I mean…”

  “Yeah.”

  “Somehow you’re able to pray on it?”

  “Mm-hmm, right. Because I have faith…”

  “Right. So when you prayed, how did you pray on this?”

  “I said, ‘Lord, give me the guidance as to which way you wish me to go.’”

  “Do you feel like the Lord spoke to you?”

  “Yeah. I feel like the Lord spoke to me and told me, hey, you know, don’t do chemo because this will make you sick and then—because chemotherapy is poison, you know, and it destroys part of your organ. It could have even destroyed my heart murmur. I have a heart murmur, and it could have affected my heart valves and stuff as well as my life and my kidneys and all.”

  “So did you ever ask God why God put you in this position?”

  “No. I never asked why God put me in this position.”

  “Do you ever want to ask God that question?”

  “No. I have no reason to. The Bible tells us there’s a time for everything. You know, there’s a time to die, there’s a time to live, there’s a time for everything.”

  “Did you ever get asked by anybody who didn’t have any faith how do you get faith? What if I don’t believe?”

  “I’d tell them they need to—that God is real. And they need to find God and figure it out.”

  “And if somebody were to say to you, how do you know God is real besides what the Bible says, do you have anything in your life that tells you—that confirms for you that God is real?”

  “You bet. Me! Because I was able to prove to teachers and some grade schools that thought I would not amount to anything, because I did amount to something in my life. And when I go, I will leave a legacy behind. Just like all the plaques I have here and awards, the award from my church, what they gave me, and I also have a distinguished rescue award and Special Olympics camp award from where I helped out a lot and, you know, I have a lot of things that I will leave behind … because I was able—because God just, you know, when I was down and out and needed help and I didn’t want to ask, God took me and led me to the right places and the right people. I mean, you know, God led people—God led me to the right people to help me out so that I wouldn’t have to worry. I mean, I have had miracles happen.”

  “Mm-hmm.”

  “You know? And I have friends right now who are praying that my cancer will go away on its own, which I think is good.”

  “Do you think it’s going to work?”

  “I’m not sure. It’s up to God. Whatever God chooses for my life, it will be.”

  Daniel and I talked on and on. We were in the basement of his house—a full basement of one large room with every inch of wall space decorated by a Special Olympics medal or a certificate from a local Bridgeport church or civic association. There were a few bookcases—cubes that you get at a container store—and they were mostly full of scrapbooks and photo albums from his many adventures with local organizations, and with Best Buddies and Special Olympics around the world. From time to time, he’d point out a keepsake and digress into a story about how he’d won it. “Here’s my medal that I won at the State Games in Charleston … Here’s the computer that I use to send all those e-mails that you send to everyone…” He was proud to show off the markers of his life, but as quickly as he’d point to them, he’d put them down gently and casually, as if moving on. He seemed to love them all, but he didn’t hold any of them as if they mattered all that much.

  I mustered the courage to press him to open up to me at an even more personal level. “How did you get to the point where you experience God…? Do you remember the last time you really felt God’s presence?”

  Immediately, he returned to cancer.

  “Well, when [I was in the hospital] I woke up and I knew my pastor was in the room, in the recovery room, and I woke up from my surgery and the nurse gave me my hearing aids and stuff and I experienced God trying to help me to wake up, you know, and I knew something was wrong when I saw my CPR band taken off and then I knew something was wrong when I seen my two brothers come and both of them have power of attorney. You know, they were like—and my niece was crying a little bit and I knew something was wrong and I was like ‘Okay, God. What’s going on here?’

  “They wouldn’t tell me, you know. Well why would the whole family be there for? I knew that God was, you know, keeping me in peace and giving me comfort and guidance to get me ready for what was going to be told to me.

  “And then when my doctor told me [about the cancer], I took it better than what my family thought I would.”

  “Did you go to a dark space?”

  “Huh?”

  I couldn’t help but wonder if the news had drawn him back to the depth of aloneness and fear.

  “Did you go to a dark space?” I repeated.

  “I relaxed in my mind. I floated off into a dark space.”

  “Is that the same dark space you spoke of before?”

  “No. It’s two different dark spaces. The one dark space was loneliness stuff, you know, but the other space is where you go to give yourself peace of mind, a chance to relax, and to reenergize yourself and to think about stuff and life in general, you know?”

  “Is it sometimes easier to have your faith when you’re in that dark space?”

  “Yeah. Because you know you’re not alone.”

  “In the first dark space, you’re alone?”

  “Yeah. Right. You have nobody. But in the second dark space, you’re not alone. You have faith. You have the Lord. You build happiness, you know?”

  “Mm-hmm. There’s no way you could be in the first dark space now?”

  “Nope.”

  “And if everybody left you?”

  “Nobody is going to leave me.”

  * * *

  Daniel Thompson died a few weeks after my visit to West Virginia. He was reduced in a matter of days from a walking, talking, upbeat young man to nothing. He was raised in a faith rooted in the Bible and he died in that faith, too. But he didn’t just read the book; he sought the presence of the God to whom the book referred. He opened his heart to see the spirit come alive: he believed that love is more powerful than hate; he practiced that tru
st is more powerful than fear; he knew that faith is more powerful than doubt. He lived it all the way: life is more powerful than death. “Whatever God wants for my life, it will be.”

  As I prayed for Daniel in the days following his death, I kept thinking of the verse that is repeated over and over again in the Psalms and the gospels and in the writings of the early Christians: “The stone the builders rejected has become the cornerstone.” There was a paradox in Daniel’s life, just as there is a paradox in the text of the psalm: what you think is broken is, in fact, perfectly beautiful. The beauty is the work of the divine and can be seen by us mere mortals if we use the eyes of love, and then the broken is transformed into something “beautiful to behold.” With our hearts tuned to this beauty, we begin to see beauty in all things and then just beauty itself. Daniel had heaping amounts of struggle and pain, but he had learned, like Vanier, to love the enemy of the “dark spaces” and found his way through them to heaping amounts of triumph and laughter. He was as determined to change the world as any other great social activist. But he was equally focused on trusting that his destination was in the hands of the maker of that same world. The ultimate truth came from seeing the world as he saw it from the quiet, dark space: with trust, peace, gentleness. He was a cornerstone of faith and trust.

  Two years after Daniel died, my mother followed him to the light. Her last Special Olympics event was the World Games in Shanghai, where Hu Jintao, the president of the People’s Republic of China, joined with her in celebration of people with intellectual disabilities. Just over ten years earlier, a senior leader of that same country had called for the elimination of people with intellectual differences, but amid fireworks and tens of thousands of volunteers and a television audience of more than one hundred million, Hu declared those days to be over. “The Chinese government and people will use the occasion to promote the well-being of people with disabilities in China, and work with governments and peoples in other countries to improve the well-being of people with disabilities in the world and contribute to the building of a harmonious world of enduring peace and common prosperity,” he proclaimed. My mother was eighty-six at the time, and bone thin, and living on the other side of several strokes. She was no longer running games or delivering speeches. But maybe as a result, she was having more fun than I’d ever seen her have at games before.

  The ceremony dazzled the crowd. There were thousands of drummers; magnificent, staged adventures depicting the search for unity and harmony; enormous fireworks and light shows; and stars such as Yao Ming, Yo Yo Ma, Lan Lan, and Jackie Chan. Tens of thousands of Chinese volunteers embraced the mission my mother had fashioned from her own childhood. When she was recognized from the stage, she stood up, and eighty thousand cheering citizens of China stood up, too, waving in welcome, support, and gratitude. I spoke briefly to the crowd and called on the spirit of Lao-tzu, who wrote that “the way of heaven is to benefit others.” From where I stood on the field, I could see my mother’s face on the giant screen as people cheered and cheered for her.

  Shanghai was a long way from Brookline, where my mother had heard the lonely voice of her mother saying the words that would animate her life: “There is nothing for Rosemary.” It was a long way from the heartbreak of Rosemary’s operation in Washington, DC, and a long way from the summer camp in Rockville, Maryland, where my mother had spent hours upon hours in the pool trying to teach lonely children to swim.

  But the distance from where she grew up to where she died was short. Her life ended in a hospital room with a view of Nantucket Sound, where she’d raced sailboats with Rosemary and all her siblings as a child, where she’d returned in the summer to raise her own children by the sea, where she’d laughed with her brother on the night when he was elected president of the United States, and where she’d gone to comfort her mother when he was murdered. Toward the end of her life and despite all her work, she worried that she’d done almost nothing of significance. “You should write a book,” I said to her a year before she died. “I’d have nothing to write,” she answered. “All I ever did was teach children with intellectual disabilities to swim.” The work was never done for her, and rest never came. She kept the faith. That was enough.

  At the end of her life, she was surrounded by her husband, her five children and their spouses, and nineteen grandchildren. She was enveloped by all of us. The brash games she’d played were finished, and she was ready for the heaven she’d always believed was her most important goal. In the bedroom of her house, there were thirty-four different images of Mary of Nazareth.

  Two thousand years earlier, Mary had declared, “My soul proclaims the greatness of the Lord … He has cast down the mighty from their thrones and has lifted up the lowly” (Luke 1:46, 52). Such was my mother’s life. Her great gift was to make it possible for Daniel and Loretta and Donal and Pearl and Ramadhani and millions more like them to have their rightful places of belonging and triumph. But I believe that perhaps her greatest gift was to those of us whom she taught to see them. She taught us to play her Olympic Games, so that each of us might know the unimaginable beauty of every child of God. Her games make no sense without the belief that each of us is precious, never to be left alone. And they make no sense if the beauty of all creation isn’t worth trusting all the way to death and beyond.

  SEVENTEEN

  Storm the Castle

  On October 19, 1962, President John F. Kennedy arrived in Cleveland, Ohio, for a campaign appearance at the Public Square. He was there to support his fellow Democrat Ohio governor Michael DiSalle, who was up for reelection against a tough Republican opponent. DiSalle was serving his first term as governor and had triggered widespread controversy with his adamant opposition to the death penalty and his attempt to expand services for the “mentally retarded” at taxpayer expense. With the election only two weeks away, DiSalle was trailing badly in the polls and the president was on hand to lend his support.

  He was also there for another reason: to maintain the appearance of a normal schedule in order to protect the secret of the presence of recently discovered Soviet intercontinental ballistic missiles just ninety miles from U.S. shores in San Cristobal, Cuba. That week was, by most accounts, the most intense week of his presidency and among the most dangerous in history. Just two days before the rally in Cleveland, the president had received an intelligence briefing documenting incontrovertible evidence of nuclear missile construction in Cuba. He had immediately begun meetings with top military commanders to prepare for a series of possibilities, including a nuclear attack against the United States and nuclear war with the Soviet Union. Within days, he would order a blockade of Cuba and the readying of the U.S. nuclear arsenal. When the blockade began, Secretary of State Dean Rusk alerted heads of state worldwide to “as grave a crisis as mankind has been in.” Soviet premier Nikita Khrushchev threatened “catastrophic consequences.” The fate of the world hung in the balance.

  But the threat had not yet been made public, and the president’s agenda was a world away from nuclear Armageddon: he was there to advocate for activism in government and in support of DiSalle’s agenda for Ohio. Days earlier, the president had received the report of the panel he’d appointed to study the issue of “mental retardation.” It argued for a significant increase in federally funded research, training, treatment, care, and community support for the nation’s largest population of people with disabilities, those with intellectual disabilities. DiSalle was the rare governor who thought the issue important.

  Just a month earlier, a resident of the Columbus State School (formerly the Columbus State Asylum), a twenty-one-year-old man with an intellectual disability named Eugene, had reported that he had been beaten with a pitchfork and baling wire. The sad probability was that beatings like Eugene’s in Columbus, Ohio, were probably the norm across the nation, though almost no one knew or cared. When Kennedy spoke in support of DiSalle at the noonday rally, he was acutely aware that no significant attention was being paid to the residents of insti
tutions such as the Columbus State School. But with the report of the presidential panel now completed and the recommendations thoroughly worked out, the president was ready to act.

  He invited the crowd in Cleveland to recognize the extent of the challenge facing the nation: “Do you know today that in the United States today three percent of the children grow up mentally retarded?” He cited the reduced levels of incidence in countries such as Sweden, where effective maternal health systems were in place and where more attention was being accorded to early treatment and education. “Can you imagine,” he continued, “that two percent of our children live with mental retardation who could be saved if we had the programs and the recognition of the need…”

  He looked straight at the crowd, and his voice rose a notch: “For those of us who have seen children live in the shadows”—and here he put the full weight of his voice behind the word—“a country as rich as ours can’t possibly justify this neglect.”

  “Can you imagine?” President Kennedy asked. He could imagine a nation that denied rights and privileges to those at the margins, because he’d grown up in that very nation. He knew the wages of neglect. He knew that there was no justification.