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Family Histories

The Influencing Machine

When a genetic disease looms, we’re more like our parents than we’d like to believe—and when we become parents, that fear only grows.

Sink, Peter Funch, 2013. Courtesy of Peter Funch and V1 Gallery.

My father has a Facebook page for his kidney. It’s not as weird as it sounds because he has been on the donor list now for over three years and counting. He’s slowly dying, turning into a kind of biochemical soup—phosphorus and water and iron and beta-keratin.

I take prenatal vitamins with all of these things, and supplements like fish oil, which my husband buys in extra-large dark-colored containers. I’m a different kind of chemical soup, the productive kind, because my insides are making something new, while my father’s insides are slowly become useless. Both of us are listless and have swollen feet and ankles. We discuss the best kinds of supportive socks. I like the ones you buy in the geriatric section of the drugstore. They hug my feet in a comforting way.

Here’s what we don’t talk about: What happens if no kidney comes?

 

On his Facebook page, my father has a picture of a beach, which I find kind of funny since I don’t remember him ever liking the beach. He also has a photo of himself that looks like it’s from his work ID. I want to tell my father he should find a friendlier picture to make himself more attractive to potential donors. It’s like an advertisement, I reason, and you want to look as worthy of saving as possible.

“I want to live to see my grandchild,” he posts.

It’s hard for me to look at his page. At first it was because I felt embarrassed in the way children are of their fathers. I was embarrassed by his naked need, by his desire to live.

But something else bothers me too. I have the same genetic disease, and my children might, too. And I want us all to live. So, inside, I guess I feel the same way.

 

Right now the country is facing an organ crisis. It’s not a very popular crisis to talk about because it’s about organs, which are ugly. I know because I’ve seen my kidneys in a sonogram, and I had to turn away. There are more than 70,000 people on the kidney transplant list. In most places the average wait time is five years. Five years is a long time to wait.

He watches Battlestar Galactica, streaming episode after episode, while machines move the blood out of his system, clean it, and then put it back.

My father is not a patient man. He’s the type of person who grows impatient waiting in restaurants. I know when he’s upset because his mouth sets in a particular way and his nostrils flare a little, although I’ve also never told him this.

Now he has to sit in a dialysis chair three times a week for hours on end. He watches streaming television shows, ones I’ve heard of and ones I haven’t. We don’t really talk about what he watches, but I know because he uses my Amazon instant account. As a result, I get emailed recommendations for things I don’t remember watching. Sometimes I assume I did watch that show – maybe I fell asleep – but then I realize it was my father. He watches Battlestar Galactica, streaming episode after episode, while machines move the blood out of his system, clean it, and then put it back. He thinks about outer space while he tries to keep his body in functioning order.

 

My father is on what’s called the “death donation” list, meaning he is waiting for someone to die. I hope it’s a peaceful death, that the person enters a coma first. Preferably, their family is also agreeable, and the person doesn’t have any little kids. Best if the donor is older, with dementia perhaps, so they don’t know what’s happening to them. But not too old, or the organs will be useless.

The other way to get an organ is to have someone give you one. Luckily, people have two kidneys. It’s hard to ask someone for a kidney. It sounds OK in theory—sure, I have two. But most people don’t like surgery. Or it’s just too personal. It implies a closeness that can never be severed.

I asked my husband if he would give me a kidney, and he hesitated, just for a moment.

“I’d have to think about it,” he said. “But probably yes.”

It was too late. I only heard the hesitation.

That’s what happens. People don’t think these kinds of promises through. You get married and promise “till death do us part,” but you don’t sign up to hand someone your organs.

 

My father has a disease called polycystic kidney disease, or PKD. It is, I have since discovered, one of the most common kidney diseases today. It is also one of the few diseases researchers have linked directly to genetics: It’s passed through a few different genes. PKD is a dominant gene, meaning offspring have a 50/50 chance of inheriting the disease. Both my brother and I have it. My father has two brothers who have it—they’ve both received kidney transplants.

Once my father was told that he was number 50 on the transplant list. I thought that sounded like a positive sign. Surely more than 50 people die each year in car accidents and the like. Other people’s lives become just bodies, statistics. The woman was wrong, or the number was off, or something else came up, but in any event, it’s clear he’s no longer number 50. Immediately I felt guilty, just as I maybe should feel thinking about the numbers of people who die that I don’t know about.

 

I found out I had polycystic kidney just before I got pregnant, during a physical that was long overdue. While I was in no immediate health danger, I found myself in a world suddenly fraught with dreadful possibilities. A simple blood test was no longer simple; it might reveal another sign of my mortality. Simple things began to terrify me. I remember that summer as one of living in suspended animation; I looked forward to watching the Bachelorette each week because it meant I had made it another week. Would she choose the guy with a winery and floppy hair or the bald guy in construction? Would I be around to see it? Her choices carried a life-or-death import for me.

At the same time, I remained in some degree of denial about how my kidney disease might progress. This, I think, is sort of healthy. As my father gets sicker and sicker, I learn more about dialysis and treatment, and I inevitably realize I likely will be in that same situation one day. I try to think of something else.

As we grow older, we find out that perhaps we are more like our parents than we want to think.

Most of my life I assumed I was very much unlike my parents. I mean, I knew I was like them in the obvious ways—I have eyes like my mother, ears like my father. But like most children, I liked to think I was quite different and distinct from them: I am a writer, while my parents are scientists. And I also assumed I didn’t have PKD—my blood pressure had always been low and I was relatively healthy.

But, as we grow older, we find out that perhaps we are more like our parents than we want to think.

I told my husband that PKD is a “chronic condition.” I’m not in pain. I don’t suffer obviously, nor must I undergo painful procedures. But sometimes I wonder if that’s just my way of avoiding the fact that I will need something—desperately—from someone else.

 

People talk about feeling in debt when someone donates an organ. Dr. Sally Satel, who had a kidney transplant and is a doctor, eloquently writes about her mixed feelings of relying on someone else for a vital organ. She thinks organ donation should be a purely financial transaction, more like buying a used car, without all of the feelings that come along with a personal exchange.

“I wanted my donor to be completely anonymous so I could avoid the treacherous intimacy of accepting an organ from someone I knew,” she writes. She later quotes the work of two sociologists who discuss the “tyranny of the gift,” the idea that once someone does something altruistic, they are bound forever like debtor and debt holder, “in a mutually fettering way.”

I see where she’s coming from. Permanent ties to people used to make me nervous. But then I had a child.

My uncle received a kidney from an old student of his. I’ve met the donor, and he seems like a nice guy. He gets a lot of hugs and congratulations. I don’t know if my uncle feels indebted, but I suppose he might. Maybe he is more comfortable being intimately entangled with other people.

I’ve heard there are strangers who offer to donate kidneys. My father has received emails from around the world—war-ravaged African countries, China, the Middle East—from people offering their kidneys. They don’t name their price, but he usually assumes the debt would be too big to ever repay.

It turns out Dr. Satel got a kidney from a friend who was just the right distance: not too intimate, not too far. I’m glad it worked out for her that way, but it must be a struggle to maintain relationships that aren’t too entangled, that aren’t too fettering. She was relieved to find out she wouldn’t have to talk to her friend about the kidney she gave her; all that gratitude would just go unsaid.

 

While I was pregnant with my daughter, I assumed we were the same person. We liked the same things—when I wanted a mango smoothie, she did too. When I was tired, so was she. I didn’t know what she would look like then, of course, but I pictured her as pretty much just like me, only less formed. And I also feared she would have PKD, like I do. But unlike other qualities I pretended my daughter had, I wasn’t sure I wanted to know if she’d need a kidney one day, too.

I hated him because he was pushing me to see my unborn daughter as anything other than perfect.

PKD can be detected in fetuses using genetic testing from the results of an amnio. I elected not to have an amnio; I was 35, the borderline recommended age for one, but all other tests indicated my risk of most major problems was low. I did not consider PKD to be a major problem although I, of course, dreaded the idea of passing it along to my child. But I could justify this decision quickly—what about genes for obesity, surely just as dangerous in the long term?

When I told the OB I was not planning to test my fetus for polycystic kidney genes, he said, “Perhaps you think that because you feel fine. For now.”

He was a severe man with an Israeli accent. He handled my belly with calm authority and smooth hands. Later on in my pregnancy, he would try to flip my daughter manually, using those hands to turn her the right way to descend into the birth canal. He showed my kidneys to the residents who were watching me with wide eyes while I lay splayed out on the table.

“Have you seen a kidney with polycystic?” he asked them, as if it were a tasty roadside diner on the way to the Maine coast.

I hated him because he was pushing me to see my unborn daughter as anything other than perfect.

“What if she’s sicker than you are?” he asked. “What if she isn’t like you?”

In the moment, I felt weepy, but I also felt surprised. I had not considered that my baby might be something other than perfect. I mean, I knew it was an objective possibility, but I hadn’t really thought about how my own biases and feelings about my own health would affect any child I might have.

 

Of course, now my daughter is a person in her own right, and she is not like me. She likes things I remember dreading as a child—the sound of running water in a bathtub, the feeling of being suspended upside-down. She discovers new foods, the ones my dad must give up: pasta and potatoes and bananas and orange juice. Children are like us, and they are not.

As a child I was always fascinated with family history. I wondered where we came from and what my distant relatives were like. I made up stories about them because we knew so little, as many immigrant families do. I tried to find justification for my own habits in people around me the same way people inspect children and look for generic identification—her nose is like my mother’s. Her mouth moves like my husband. Her eyes remind me of my brother.

 

I’ve had many occasions to think about my choice not to do a genetic test on my daughter, not to find out for sure. My rational defense was that I was already pregnant; it wouldn’t have affected my decision to have her one way or the other. And now, I see her running, playing, calling out to me, and I wouldn’t have her any other way.

But at the same time I am, at heart, a little bit unfair about genetics. I did, after all, undergo the usual tests for things like Fragile X and Down’s. If you asked me, I would have told you I would probably not have chosen to continue the pregnancy if I’d found out she had any of these diseases, the ones I consider more serious. I’m not objective, I’ve found. I’m biased against diseases that are not my own.

 

Like many new mothers, I held the same vigils and talismanic rituals designed to keep my new daughter safe. I tried to do everything right: swaddles, sleep, feeding, and air circulation. I trembled over the decision to keep or remove a crib bumper. But in fact, I already knew the greatest harm I could do to her was probably already done.

She’s too young to understand all this, and we won’t know what kind of debt I owe her for many years. But one day, I will be my father, reliant on machines, and she will be me, watching. We probably will never talk about this, just as my father and I never talk about it.

I find I am frightened less by my own health than I am afraid I will not be able to keep it together for my daughter. I do not, I realize, want her to see me afraid. Sadly, I am not beyond fears. I am wracked by them daily. But all the more reason, then, for me to protect her from that part of me.

It is hard for me to see my father afraid, but I can understand it. I like to think I will be different, but I am not so sure. I like to think I can protect my daughter from all kinds of things—she is mine and at the same time, I must accept one day she won’t be.

Jessica Pishko graduated with a JD from Harvard Law School and received an MFA from Columbia University. She practiced corporate law, specializing in securities fraud, and represented death penalty clients and victims of domestic abuse pro bono. More by Jessica Pishko