One and the Same (31 page)

“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 have 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.

“Five or six times over the course of the afternoon. Charlie and Blyth were with her. And then she would come back. It was very hard. And it was exhausting. And everybody couldn't figure out why she wouldn't let go. We were asking each other, ‘Why isn't she letting go?'
And then we realized that Taylor hadn't been in to see her, and maybe Cameron was waiting for that. And so then Taylor went in to say good night.”

Tim has tears on his face.

“And Cameron died ten minutes later.”

Tim and Charlie represent to me the paradigm of a twinship that managed to expand over the years—to include friends and spouses—in a way that appears unforced, and without modulating the brothers' intensity. That's not to suggest their foursome is flawless—there have been strains and spats. But overall, they've built an intimate universe that salutes each person's importance in it. Which is probably why Blyth said she doesn't spend a lot of time measuring her bond to her husband against his with Tim.

“I have a reverence for their twinness,” she says. “I'm like, ‘Whatever that needs to be, you get to have that.' Because I can't even imagine what they have. That's cool as hell. Their relationship preceded me by twenty years. So I have a reverence and a deep respect for it. Now, there have been times, like when Tim's son, Hayden, was dying and Charlie was focused on Hayden's being sick and being about to die, and he had to be in New York over and over again, and I was eight months pregnant with my third child and I had my three-and-a-half-year-old, Taylor, and my one-and-a-half-year-old terminally ill daughter, Cameron, having seizures, and I was managing at home—sometimes I was like, Hello!? But then I would realize, Of course he has to be down there with Tim.”

Blyth takes a heavy breath. “My issues with relation to the Charlie-Tim thing were never that I felt that I was being locked out by Tim, but more that my husband's intensity of focus was not on me at that moment. And yet I respected it. I had moments of feeling sorry for myself, but I realized, This is not a competitive thing, Blyth; it's just that now's the time for his focus to be on Tim and Tim's dying baby. That's where his focus belongs. It doesn't belong on you right
now. Get over yourself. That's the way I would describe it. Because I'm not the twin here.”

“We don't actually talk about our marriages very much,” Charlie says. “This was the one time we leaned on each other for that.”

I ask whether it was indeed a big strain on their relationships.

“We dodged some bullets,” Charlie replies. “And maybe it's because we've chosen well in terms of being with women who have similar basic values. Not only did Tim and I have ultimately very similar feelings about life and death but our spouses did, too.”

“I also remember a walk that the four of us took that Thanksgiving weekend,” Tim says. “We had just found out that Cameron had Tay-Sachs—so it was three weeks after Hayden had been diagnosed and three days after Cameron had been diagnosed—and the four of us were walking around Boston together, and feeling this weird sense of ‘Thank God we have each other. I wish this wasn't a club I had to belong to, but I have a club.'”

I rented an office to write this book—a street-level room in a chiropractor's office on Fifth Avenue, with a picture window overlooking Central Park. There were times where I felt like performance art:
Live Twin Typing
. Pedestrians who know Robin would happen by, gape, wave tentatively, or look generally confused.

One day, Robin forwarded me the following e-mail from an acquaintance of hers: “Subject: Are you working in a building on 5th avenue in the 70's today?”

It isn't unusual for me to be mistaken for Robin on a weekly basis in Manhattan (no exaggeration), and this means I'm regularly reminded that I'm someone's double. What does it mean to be a copy of another person, for there to be two of you, for you to impersonate or replicate someone else just by existing?