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"One of the real losses in being paralyzed," he says, "is the absence of spontaneity. You can't do things like go for a cup of coffee on a whim. Whenever I leave the house, it's a huge operation. I have the nurses. The van has to be equipped with an oxygen tank, emergency meds and an Ambu bag, which is like a balloon used to pump air into someone manually. We had an episode when I was coming back from New York one time in the winter, and the vent failed just as we were coming up the driveway to the house. We needed the Ambu bag to ventilate me until we could get up to the house. And we were stuck in the driveway in the snow. The nurse was ventilating me as Dana was trying to get the car up the driveway. Without an Ambu bag right there, I would've been in serious trouble."
A subtler difficulty entails a psychological riddle: the simultaneous acceptance of his disability and the desire to fight it. On the one hand, the disabled say to others: Take us as we are. On the other, nobody wants to be disabled. Reeve is both who and what he is and who and what he does not want to be. "You don't want the condition to define you," he says, "and yet it occupies your every thought."
The first brief visit home that he was allowed from Kessler last September was the weekend of his birthday. "It was my first time home since before Memorial Day. And I came up the driveway, and at first I was thrilled to see the house and everything the way it was, and then I just broke down because you realize how much everything has changed and how you are going to be different in the house and how everyone is going to have to make so many changes to accommodate this new life. I got out of the van, and it took me a while before I could come inside. Dana and I just sat in the driveway and held each other until I could sort of pull it together."
In some ways, the injury has proved useful. Everything in his life has become intensified. He focuses more on family than ever before. He observes that a good marriage will be strengthened by such a calamity, but a bad one tends to get worse, and his was good. He is closer to all three children. "I used to sneak away in the mornings and train my horse. I wouldn't give the children the attention they deserved. All these missed connections," he says.
Yet the attention he requires is double-edged: "It takes away other people's opportunities. It changes their expectations. It makes them accommodate me first." There is a bittersweet quality even to some of the good things gained. The first day he got back to his Williamstown home, "I parked myself on a ramp. It was a beautiful, cool afternoon, and I just looked up at the mountains for about two hours and felt very, very peaceful." Then he adds, "These are things that I thought I would learn to do when I was 75, not 43."