Page 67

Pimiento Cheese.” In the background, muffled body slams, moans and groans come from the bedroom where Matt is watching SmackDown! from World Wrestling Entertainment. “Why don’t you invite Mary Lou over, Will?” Alex says. Will takes the phone from his dad. “Call Mary You,” he tells it. The phone obeys. Mary Lou answers. “How are you doing?” Will asks. “I was calling to let you know you could hang out with us and eliminate your loneliness.” Mary Lou accepts, and Will, visibly elated, tells her: “As the Inyish say, that sounds grand.” Will’s speech is slurred by muscular dystrophy. He and Matt were diagnosed with MD, which is totally unrelated to MS, when they were 3, about two years after Liz’s diagnosis. MD first attacks skeletal muscles. The muscles are replaced by fibrous scar tissue and fat, and as the disease progresses, individuals lose control of their limbs and, ultimately, anything else controlled by muscles, including their lungs and heart. It’s an end-stage disease, sometimes limiting life expectancy significantly. As Will hangs up, Liz’s arm starts flailing as if she’s trying to hail a cab, which is her way of letting Alex know she wants to say something. He bends down so close he can hear, even feel, the passage of air coming from her mouth. “Do you want something?” he asks. No. “You want to say something.” Yes. He’s on his knees and holding one of her hands. They’re both smiling, happily working together on a puzzle, Alex joking, Liz forming words with her mouth in a whisper only he can hear. They’re eye-to-eye, their noses almost touch, reminding me of a pair of doves cooing and billing. Alex switches to a system where Liz spells out words. “G?” Yep. “I?” Yep. “V? “Give!” “Give David?” “Oh! Give David some tender-loving pimiento cheese!” I ask Ann Shepherd, who comes over to the house several times a week to take dictation from Liz for thank-you notes, whether Alex and Liz are still as in love and as intimate as they seem to be. “Oh, yes, there’s real magic there,” she says. “Liz can do nothing, so there are no secrets between them. Liz trusts him completely.” By Alex James’ calculus, their love has actually grown because of her MS. “Her loss of speech has made us closer,” he explains. “It’s forced us to communicate in a different way that’s very intimate. Taking care of people’s The Art & Soul of Greensboro

every need creates an intimacy that’s real hard to describe, but the level of trust all three of them have in me is a real blessing.” In fact, to hear Alex James tell it, he and his family live a blessed life. A crew of eighty-five volunteers, called Joy Friends, come by the house to do everything from taking out the garbage to giving the family a wheelchair-accessible Dodge van a few years ago. He and Liz go out on dates to movies, sometimes double-dating with Will and a friend. Alex and the boys go bowling and to baseball and basketball games and, a favorite of the boys, to Hooters with their “blonde-tourage,” a group of women who help Alex with the logistics of getting two wheelchair-bound 23-year-olds from here to there. At home, the family enjoys TV, music or silly clips on YouTube. After hanging out with them over several weeks, I decided they were as happy as any family I know — and measurably happier than many. “Are you in denial?” people, myself included, sometimes ask Alex. “I believe it’s about choices,” he says, a dimple on his chin and the smile lines on each side of his mouth coming into play, his blue eyes sparkling, “deciding to focus on what’s good about this rather than what’s bad about it.” There are plenty of things he’d like to change, but can’t, “but you can control your reaction to them,” he says. “We experience pain, sorrow and all those things, but I see that as a natural part of life and you just sort of look at it, acknowledge it and just move on.” “They seize the moment,” Ann Shepherd says. “They live like many people say they’re going to live — but don’t.” Their life is very different from others, she says, “but it’s not bad. They don’t have that feeling about it at all. People come over to, quote, help them, and leave having been lifted up. They give back so much more than you give them.” The phrase that Alex James likes to use to explain the seeming contradiction between his family’s progressively deteriorating health and their constantly upbeat life style is, “There’s room for joy.” What he doesn’t tell you is that he has become the master of making room for joy. Alex James grew up solidly middle-class; his father was a textile executive, working first for Burlington Industries, then Fieldcrest-Cannon before December 2013

O.Henry 65

December 2013 O.Henry  

The Art & Soul of Greensboro

Read more
Read more
Similar to
Popular now
Just for you