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5. too many variables: relationships within the household
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too many variables: relationships within the household five W hat happens to love when the lovers are forced together, in close quarters like a bathroom, or a toilet? What happens to love if the lovers are Siamese twins? Or when one of the lovers is a Siamese twin-with his attendant? What happens when one of the lovers is, in twelve-year-old Bret's words, in charge of both bodies? If the two of you were the only ones left in the world, what would happen to love, even without that onesided dependency? What happens to love during just plain hard times, temporary hard times, when things are simply not going well? Jeff and I kept our love life and our sex life throughout most of what we've gone through, both the ordinary stress and the dire straits. We even chose, nine years ago, when he was already a wheelchair user, to have another baby. We probably never stopped communicating; certainly I said what was on my mind, and I tried to say what was on his. He was less articulate, more of a denier. I would try to get him to stop denying, not only for his sake but also because the denial was often too much for me. Or it would hurt me. If, 86 Copyrighted Material too many variables 87 for example, he denied that he was having more and more trouble turning over in bed, that meant the difficulties in turning him were my fault. It also meant that those difficulties went unacknowledged. So, sometimes gently, sometimes angrily, I fought his denial by trying to get him to say, and usually eventually myself saying, what was on his mind, or what I thought should be on his mind. People have said, "It's amazing, how you kept on going. Such a terrible thing happened and you just kept on going." For a long time we provided a life and a home for ourselves, our kids, and our cats. More and more, however, I felt less compassionate toward Jeff, less able to love him strongly, to say a long tender good-bye to the love of my life, and to mourn the gradual losing of him and the anticipated sudden loss of him. I was too busy doing nights, lifting, and toilet, or worrying or tantruming about them. I was also busy sorting things out, protecting the me in me (finding time and space for writing, teaching, thrift shopping, singing) and protecting the mother in me, for the sake of both the kids and me. I was, in short, fighting for my life. I once spoke with a mother who lost a baby in the second trimester. "As soon as I started hemmorhaging," she told me, "the focus immediately switched from saving the baby to saving me." That's what was happening to my focus. It was pure survival instinct. Jeff was aware of all this, because I told him, many times. He would nod. I hoped that meant he understood that, eventually, he would have to be in a nursing home. But I see now that he was probably caught up in his own survival Copyrighted Material [54.81.185.66] Project MUSE (2024-03-19 03:09 GMT) dirty details 88 instinct-to stay home with his family, to keep his life, the him in him. I'm not fighting for my life now. And he, for the most part, has accepted what is happening, if not what is going to happen. And even as his condition advances, his voice weakens, and we worry about money, our relationship can proceed ... well, to its natural conclusion. I can begin to feel the loss, both the present loss and the future loss, and I can begin to say good-bye. We can begin to say good-bye. _ In an early poem I wrote that Jeff and I were "becoming separate species"i that poem is a favorite among well spouses. At the time that I wrote it, only his diet and sleep habits were separate. Over the years the separation grew. There were nights when Bret or Aurelio or Beverly would be "on" with him, and we would be in separate bedrooms. The mornings after those nights I'd find that I liked to get dressed, washed, teeth brushed, breakfast made, and any other chores done first, before my final chore of going downstairs to say good morning to Jeff. For that was a...