Updated: Jul 9, 2020
| This is the 126th story of Our Life Logs |
I was much more scared than I was thrilled when we got the call to come to Jewish hospital where someone was dying of chronic heart disease. His liver and kidneys were a match.
“Do I have time to pack a suitcase?” I asked.
“Yes, but get here as quickly as possible,” the attendant said. One minute later, she called back. “Just get down here,” she said this time.
As soon as I arrived, the staff put me in a wheelchair and rolled me to the surgical theater—for the drama, I have to assume. I was perfectly capable of walking. It took two minutes to get the stair chair working so I didn’t have to go down three stairs.
“You know, I could just walk down those stairs,” I told my attendant.
“We’re really in a hurry here,” she said with exasperation, while struggling to get the machine to work.
I was begowned and hooked up to machines. As the sedation was kicking in, I had a scary thought. “Wait. What are you all here for?” I asked.
“You tell us,” the nurse said. I swear it’s true. I’m not imaginative enough to make up something like that.
“Liver and kidney transplant,” I said, struggling to add, “Please. I really don’t want to wake up with a new knee cap…”
I woke up four days later, fighting to breathe.
I’m not the first person who has ever fought to stay alive. When I hear other people talk about their brushes with death, a common phrase emerges: “I was fine, until I wasn’t.” We all say that because, while our disease and recovery might be a turning point, it doesn’t define us. Most of us were fine until we weren’t.
I had 55 mostly good years. Life started for me in 1958, in Wheaton, Illinois, a quiet, undistinguished suburb of Chicago. I remember a mostly sunny childhood, checkered with dark moments when my father went on angry rampages. I know now that my parents struggled financially. Like many parents of that era and today, they bought more house than they could really afford, and the mortgage payments were a heavy weight. They both worked full time to maintain those payments. I was blissfully unaware of that as an only child.
At some point while I was studying for first grade, my father died of kidney failure, the result of polycystic kidney disease which would come back to haunt me fifty years later.
Our lives changed after that, not for the better. My mother could not afford the payments on our house, so we went to live with my grandmother. I would love to tell you that grandma was a sweet old woman, but I would be lying. My grandmother was of the “children should be seen—occasionally—and not heard” school. Neither my presence nor my precocious sarcasm brought her any joy. I think, though, that she did get some satisfaction from sending me to bed before my favorite Sunday night program, “Lassie,” came on, even though my mother let me stay up to watch it when she was around.
I succeeded in school. I was always a good student, eager to please, far too gratified by getting the right answer. I went to Wheaton College (1976-1980) and majored in Literature. If I were attending college today, I would major in sustainability, but they didn’t have designer majors in the seventies. I failed to get engaged my senior year of college. At Wheaton, we used the term “senior panic” to describe the drive to pair up before graduation.
Wheaton is a Christian college, and somehow many of us got through four years of it without having sex—in keeping with our religious principles. However, when you are taught not to have sex until marriage, you naturally want to get married as quickly as possible. I suspect these early desperation marriages caused a lot of divorces amongst my Wheaton peers.
During the 80s and early 90s, I picked a few bad boys to have affairs with. As I crept into my mid-30s, people started offering me pity at not having a husband and children. It always came as a shock when this happened, and I was, somehow, never ready with a glib response. I thought I was having a blast. I had work I really enjoyed, friends, enough money to rent a house at the beach, and enough leisure time to enjoy living on the beach.
In my late 30s, I asked my neighbor, Joel Worth, out on a date. People say things like this, and I never believe them, but here goes because it’s the truth: I knew on that first date that I would spend the rest of my life with him. He tells the story a little differently. “She came up and kissed me on the mouth after I cooked her breakfast. I was pretty confident after that.”
In the story of how we got together, this is usually where I protest, “I had NEVER done that before.”
“Yeah, right,” he says. But it’s true. I’m one for one on that. I have planted exactly one hot kiss on the mouth of a guy I was not dating, and then I married him. Am I sounding smug yet? Definitely picture me being smug here.
We got married on the beach, in 2006, after living together for several years. I was no bridezilla. I said my vows in bare feet. We spent absolutely no money on our wedding. We said traditional vows, at my insistence. INMHO, when couples write their own vows, they run the danger of not making any real promises. “You’re my joy, my sunshine, my life,” they gush. Okay, but what happens when you wake up one morning, and he’s not a joy or full of sunshine? By contrast, let’s look at “For better or for worse, in sickness and in health.” Now that’s a promise.
Let’s skip straight to the part where my kidneys and liver are failing. Joel is taking me to yet another doctor.
“You can leave if you want,” I tell him. “I know you didn’t sign up for this.”
“Yes, I did,” he says.
It’s true, kind of. When we first started seeing each other, I gave him fair warning that I had already been diagnosed with polycystic kidney disease. I would have some bad days. And, at some point, I would get really, really sick and probably die.
Not a quick, heroic death, either. It would involve getting weaker and weaker over years, going on dialysis, dealing with the infections and crushing fatigue that