“Well, yeah. I play that one out fairly often. I’ll say, What parts of Tim are more attractive to me than Charlie? Like Tim’s a better dresser now, probably because he lets Ali dress him. Charlie doesn’t let me dress him. Tim’s hair is looking better than Charlie’s hair these days, and maybe that’s because he wears hair product, but my husband won’t.”
“I am not attracted to Charlie,” Alison tells me in our interview at Lowe Advertising, where she’s head of human resources at the time we talk. “To me, the brothers look and sound different, and just are totally different. I think Tim is much cuter than Charlie.” She has only mixed them up once—when Tim changed his T-shirt without her knowing and she mumbled hello when he walked by her, without realizing it was her husband. “I was completely freaked out,” she said. “But that’s the only time.”
Tim and Alison finally started dating a full five years after graduation, when Tim was living in Manhattan and Alison was living with Blyth in a rental house in D.C. (To complete the incestuousness, the girls’ roommates included the Lords’ sister, Deirdre, and, at one point, Tim’s then girlfriend, Delia.) It was only after Tim and Alison had each broken up with their mates that they started noticing each other—strangely enough, just two weeks before Charlie and Blyth’s wedding day, June 27, 1992. “I saw Alison completely fresh, almost instantly,” Tim says now.
“We ended up making out all night in Washington Square Park.” Alison smiles. “But we basically agreed that we were not going to say or do anything about it because Blyth and Charlie were getting married in two weeks and we didn’t want to make us a thing to distract from their wedding.”
The secret didn’t last long. At the wedding, Alison told Blyth the news, and Tim told Charlie. “They were delighted,” Alison recalls. “But we didn’t tell anyone else.”
“I was incredibly excited,” Blyth says now, “because I just thought that the four of us married would be really fun—assuming it worked. I did get very anxious that it might not work and that then it would be incredibly awkward if they had a terrible falling-out and all of a sudden one of my best friends and my brother-in-law weren’t friends anymore. Obviously nothing like that happened.”
“Alison and I were in love very quickly,” Tim recounts. “But Charlie’s wedding was a really emotional day for me. I remember when Charlie and Blyth left at the end of their reception, I went out into this field that was behind the tent, and my mom and dad really sweetly came out and found me. They were really conscious of things like that. They knew, I think before I did, that it was going to be an intense day. And I really couldn’t even articulate it, but it was really hard. I’m sure a psychotherapist could tell you the obvious thing: Your twin has just ridden off with his wife for his honeymoon and you guys are entering a new phase in your life. But I hadn’t been able to articulate that.”
Tim and Alison were engaged sixteen months later, and married in September 1994.
Charlie and Blyth had a daughter, Taylor, in 1997 and another daughter, Cameron, in 1999. Tim and Alison had a son, Hayden, in 1998.
The nightmare began when Tim’s son, Hayden, a towheaded, cheerful infant, started to show signs of failure. He was diagnosed first with cerebral palsy; then at eighteen months, the diagnosis was changed to Tay-Sachs disease. Tay-Sachs is a fatal breakdown of the central nervous system. The gene mutation occurs in 1 out of 250 babies around the world, predominantly in descendents of Ashkenazi Jews. Children with Tay-Sachs have, by all appearances, completely healthy infancies, but gradually they start to lose their ability to smile, grasp, or eat with their hands. Eventually they become blind and paralyzed. Few children live past the age of five. For a baby to have the disease, both parents have to be carriers, so most Jewish parents get genetic testing early to rule it out. Tim and Alison, despite having no known Jewish blood, were that rare exception: Both were carriers.
The news was devastating. Charlie’s first impulse was to go be with his brother in New York.
“You were there that same night we found out,” Tim recalls.
“I was,” Charlie confirms.
“That was probably the most important thing—outside of Alison,” Tim tells me. “That Charlie was there. And through that whole thing, I think we were more open about how we felt about each other and how much we needed each other.”
“I made a decision,” Charlie says, “as soon as I knew what was happening, that I was going to come down to see Tim and Hayden every three or four weeks. That I was going to come to New York. It was just unspoken that I had to be there.” He looks at Tim with a kind of fierce focus. “That I had to get to know Hayden.”
“The first thing that happened when he got there the Friday that Hayden was diagnosed,” Tim recalls, “Hayden was upstairs in our apartment, and Charlie and I just went out in the park and threw a ball together and just talked and tried to reorder where we were. And I just knew that you and I were going to do it together. You said, ‘I’m going to be down here every couple of weeks.’”
Charlie continues the story: “When I got to the apartment where I was staying in New York that night, I called Blyth to check in and to try to describe what it had been like to be with you.” He’s looking at Tim. “And Blyth said, ‘Did you ever notice that Cameron startles easily?’ And I said, ‘What are you talking about?’ She said to me, ‘Charlie, you’re obviously a carrier because you’re twins. I went on the Web site and it says the first sign of Tay-Sachs is an exaggerated startle reflex. Cameron has an exaggerated startle reflex.’ I went cold. When she said it, I went cold. I thought, ‘Fuck, I’m a carrier.’ It hadn’t even occurred to me. I said, ‘I think we should get her tested and get you tested, so you feel better.’”
Tim looks startled. “Oh my God,” he says. He’s never heard Charlie’s side of those first horrible hours.
“What’s interesting,” Charlie goes on, “is that I didn’t call Tim about my fear for my daughter until Blyth was tested. So I went through the first ten days of waiting for Blyth’s results—”
“By yourself,” Tim interjects, sounding sorry.
“—not talking to anybody because I had decided, Everyone is struggling with Hayden. I’m not going to add to their worries. I thought, This will be a drama-queen move if I mention it. It will suddenly be about me and Blyth, and it shouldn’t be about me and Blyth. It’s about Hayden and Tim and Ali.”
The waiting period for Blyth’s test results were rough. “That was a really bad ten days,” Charlie says. “But it wasn’t ridiculously bad, because the genetics counselor we saw had said to Blyth, ‘Statistically it is so improbable that all four of you would be carriers. There’s just no way Cameron has Tay-Sachs, but I’ll just indulge you anyway and get you tested.’”
But the unimaginable scenario unfolded before their eyes. Blyth was a carrier, too.
“When Charlie called and said, ‘Blyth is a carrier and they’re testing Cameron,’ I almost went crazy,” Tim recalls. “I remember my partner at work, Jason, was trying literally to make sure I didn’t lose it. I was that emotional. All of a sudden it was almost as if I was getting a sense of what this looked like from the outside—what people were seeing in terms of what we were going through. It seemed much more terrible, more horrible. I think I almost went crazy when I got that phone call. All of a sudden I was running around One Hundredth Street and the East River Drive, screaming. I could not believe that this was going to happen. I literally could not believe it.”
Charlie looks stunned. “I never heard that story.”
Cameron’s test came back positive. She had Tay-Sachs, too; double death sentences for two cousins whose fathers couldn’t be closer.
Blyth said her first reaction was, Of course. “It made total sense to me,” she says. “Ever since Cameron was diagnosed, I’ve always said that the coincidence was connected to their ‘twin thing.’ Because it’s so inexplicable otherwise. I mean, it makes sense that they’re both carriers: They’re identical twins; they have the same gen
etic makeup. It is possible that their wives are both carriers—that is possible. But statistically, it’s like one in—I don’t even know the math on it. And therefore the ‘why’ of it to me is fatelike, mystical; this was always going to be their thing. They needed to be there for each other.”
“Tim’s and my mutation is a random mutation,” Charlie explains. “It was a mutation they’d never seen. The Genome Project maps this thing, and our case is a unique spot on the seventeenth chromosome.”
“If the letters are switched,” says Tim, helping to explain, “or if there’s a missing code, it will happen. And ours happens on a stretch of that code where they’ve never seen it happen before. So it’s literally completely random and unique.”
“It turns out that Blyth’s grandmother was Jewish,” Charlie says.
She hadn’t known that?
“She hadn’t.”
Nova, the science series on public television, did a segment on the Lords’ case for their genetics special, Cracking the Code of Life, which aired in 2002. The correspondent, Robert Krulwich, calls their situation “an unbelievably bad roll of the genetic dice.” Poignant home videos of Hayden as a vibrant blond baby with long eyelashes give way to pictures of him lolling in his baby seat, listless in his father’s arms, eyes rolling up in his head, clearly losing his connection to the world. Tim cries on the program as he says:
“I remember the last time Hayden laughed. I took a trip with him out to pick up a suit because we were going to a wedding that night, and we came back and it was really windy, and he just loves to feel the wind, and so we had a great time. We came back and I propped him up right here on the couch and I was sitting next to him and he just kind of threw his head back and laughed, like, you know, ‘What a fun trip,’ you know? And that’s the last time he was able to laugh.”
The footage of Charlie and Tim sitting on a bed, each holding their adorable, limp children in their arms, is shattering. The twin fathers just keep massaging their babies’ tiny feet, kissing their cheeks, over and over again, as if to will them to reanimate. Tim says on-camera, “Charlie and I are incredibly close and have been all our lives. And when I think about him and Blyth having to go through this, it just seems really cruel. It just seems too much.”
Charlie says now, “I had really geared up in the three weeks after Hayden’s diagnosis to be Tim’s rock. I had a book that I bought that was designed to help figure out how to be a real source of support for Tim. So when we got our diagnosis, the first thing I thought of was, How am I going to play that role and also go through this myself?” He looks at his brother and says, “When Cameron was diagnosed, the second thing I thought—after obviously thinking about Cameron—was that I was sorry that I wasn’t going to be as available to you as I wanted to be.”
“I had the exact same feeling,” Tim admits. “First it was too painful to think that you were going to have to go through what I knew we were going to have to go through. That just seemed like too much. It was like that whole thing we talked about earlier: wanting very much for you not to feel something that bad. And then the second part of it was like, ‘How am I going to be able to support you and how are you going to be able to support me when we’re both having to deal with this?’”
Hayden was eighteen months when he was diagnosed. Cameron was six months. “This child was thriving up until that time,” Charlie recounts. “The symptoms for Tay-Sachs don’t kick in till about eight months old.”
Hayden lived a little over a year more, and died in December 2000, when he was two years, eight months old. Cameron lived for eighteen months after her diagnosis, and died just a week past her second birthday, in May 2001.
“There’s a lot of very difficult stuff that goes on at the end,” Tim says quietly. “It’s terrible. It’s terrible what happens to them. There were some people you couldn’t describe it to—it was too horrifying. But I could share it with Charlie, and it was important that we did.”
“We made a lot of our key decisions together,” Charlie says.
Tim clarifies: “Our decisions about how to take care of the children. Because the decisions are so hard. … The two critical junctures are about whether or not you insert a feeding tube, because essentially you pump food into them. And what we’d come to is that, when they couldn’t eat anymore, I think intuitively that was going to be—”
“That they were ready,” Charlie says, finishing Tim’s sentence.
“Our belief ended up being that that was going to be their way of saying they were ready to go,” Tim continues. “And then later on, what happens, which we hadn’t expected, is that they get new things like pneumonia and other complications, and then there’s the decision whether there’s one complication that you finally don’t treat with antibiotics; you sort of allow that also to be a moment that they choose. For both of the children, there was a moment where they didn’t eat anymore, and a moment when they were sick. And it was very much about doing our best, as everybody does in those situations, trying to imagine that you’re really listening to their choice. End of life is something that society is tremendously poor at, and so we were able to share decisions about how we were going to handle the end of their lives.”
Alison underscores they were all in sync on a philosophical approach. “I think we all decided intuitively that we would go in the general area of nonintervention,” she says. “Because the basic decision path is: Are you going to use all of the medical tools available to you to prolong a life that is ultimately not sustainable, or are you going to use medical tools and intervention to increase levels of comfort and help ease the transition into death? And we all knew that we would be in that latter category. I don’t know how you know that, but we just knew that.”
“We helped each other,” Tim says. “It was pretty unbelievable.” He takes a breath. “Charlie was there for the entire last week of Hayden’s life.”
“That was extremely important,” Charlie asserts. “Because it took away my fear of the end of Cameron’s life. So there was a profound way in which Tim and Hayden were a remarkable foundation for us and what we would go through after them.”
Blyth says the symmetry was a solace. “I remember being so incredibly grateful that they were there with us,” she says.
I ask if she was able to lean on her brother-in-law, Tim, as well as her husband. “Oh, tremendously,” she replies. “He and Alison were amazing—”
She’s suddenly overcome and can’t continue. “They were so generous,” she says finally, through tears. “Tim has a beautiful relationship with my children, especially Taylor, whom he’s known longer, who is the eldest grandchild; he just swept in and was so amazing with her. During the last week of Cameron’s life, he was up in Boston the whole time, keeping Taylor occupied. He knew exactly what needed to happen, that Charlie and I needed to be free to focus on Cameron.”
Charlie echoes Blyth in his interview. “Tim’s ability to be there for Taylor was one of the most remarkable things I’ll ever see in my life.”
Alison says she missed her niece’s final days because she and her daughter, Annie, were staying at her parents’ apartment in Boston at the time. “I don’t know what happened when Cameron died,” she says. “I wasn’t there. Our son, Hayden, died very peacefully. We took him into our room, which we had almost never done, and Annie was in there—we were all in there together—and he basically took a huge breath and didn’t breathe again. That last week was horrific from the standpoint of watching him go. It was not easy. But it was very gradual and very peaceful. I don’t know what happened with Cameron, but it was not like that. It was a struggle. That’s what I know. Tim has never spoken to me about it. He left the morning after she died and drove back to New York to see our therapist because he was so upset. So I don’t really know what happened.”
I ask her why she never asked Tim about it. “I don’t want to know, actually,” she admits. “Because it’s done and it happened and it’s over. I know enough about what it might ha
ve been, just in terms of how someone might struggle against dying and what can happen.” She pauses. “I don’t want to know about it.”
She says the four of them, as a group, don’t talk about it today. “It’s referenced, but I don’t really talk about it with barely anybody. I’m not the person ‘Talking’ about it with a capital T. Tim and Charlie do. On their birthday, if they can be in New York, they’ll go to Green-Wood, where we have a family plot, and they’ll hang out there and read poetry and write in their journals. Then they’ll go have a big boozy lunch together.”
In my living room, Tim suddenly gets emotional. “You know, the thing about my son, Hayden, dying first”—he falters—“was that I realized I hadn’t really gotten to know Charlie’s daughter Cameron. And at first that was really difficult for me”—he addresses Charlie—“because you got to know”—he can’t say the name for a moment—“Hayden. But I did get to know Cameron the last few months, and that was very important to me. And her death was actually the hardest part of the whole thing for me, oddly enough.”
“Was it really?” Charlie asks genuinely.
“Yes,” Tim admits. “I don’t know why. Her death was the thing that completely ripped me apart.”
Tim asks Charlie’s permission to talk about it.
“Can I describe it actually?” he says.
“Yes,” Charlie replies.
“I know you should be the one to describe it, but I want to, because I think it’s very important,” Tim continues. “This is an amazing thing: Even though they’re ravaged at this point in their lives, there’s obviously a spirit. If you’ve been through something like this, I think you would know what I’m talking about. We were so concerned about Taylor [Charlie’s older daughter] that we took her away that day. And we took her away much of the day before. We took her to the park. And her sister Cameron hadn’t seen her all day. She had basically stopped breathing a couple of times, right?”
“Five or six times,” Charlie affirms.
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