Last drive with Mom

My mother hardly knew me. It wasn't until she was facing death that I discovered how little I knew her

Topics: Real Families, Life stories, Liver disease, Hepatitis C, Liver transplant, Mothers, Motherhood, Editor's Picks,

Last drive with Mom (Credit: MaxyM via Shutterstock)

On a completely unextraordinary evening one June, my mother accidentally drove me to Pennsylvania. This was around the time I entered my teens, when I realized how my mother was different, when I no longer wanted to talk to her about anything. She and I developed a new tradition then, in which we would get in her car and drive from D.C. out to rural Maryland, out to the countryside. From there we would let ourselves get completely lost. The only navigational rule was that we had to follow the sun, to drive in its direction as far as we could until it was completely below the horizon. There was nothing metaphorical about it; we simply wanted to see the sunset for as long as we could.

We wound up in a parking lot in Bedford, Pa., one night, sitting in my mother’s silver car, with its floor of used tissues and empty coke bottles. This was several years after she hired a homeless woman to come clean the house whenever we could no longer see the carpet (I watched Cartoon Network and listened to her cry as she organized the shelves), so the detritus-filled car was truly an extension of home. We sat in silence – our usual, our home base – and watched an unexpected fireworks show from the parking lot at the foot of a mountain. The sun went down.

My mother lived alone. She was divorced, barely employed. She walked around with her pants slipping off, napped most of the day, had read enough books to fill three public libraries. Once every couple of weeks, she mustered the energy to put on clothes that weren’t necessarily pajamas. She gathered together her three purses, their contents resembling the trash-ridden floor of the car, and embarked with me on one of those full-day drives. She would bring bottles of chocolate milk. I would snap at her for taking too long to get ready.

* * *

On a completely unextraordinary evening in a different June, the summer between my junior and senior years of college, my mother tells me she’s dying.

She does not say these words exactly. She sits me down on the couch and explains that she has Hepatitis C, a disease that destroys the liver, that she’s had it since I was 4. She has never told me this because for years it was in remission, but a recent hospital visit has indicated some disturbing developments. She says it’s still probably not serious and she doesn’t want to scare me and everyone is probably just making this into a bigger deal than it is. She looks at the floor and speaks quickly when she says this. I don’t dare ask for clarification – so are you going to die? – because I won’t make her say the words if she doesn’t want to.  But I do need to know.

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“Don’t listen to your dad when he tries to convince you that this is more serious than what I’ve told you,” she says.  “It isn’t.”

Of course it is.

* * *

At this point, I am 21 years old.  At this point, my mother does not realize that I like foods other than macaroni and cheese. She does not comprehend the fact that I can drive a car without crashing it, that sometimes I drive without her, and so she stands on the sidewalk and watches nervously each time I drive away. She cannot fathom why I never wear the bright pink, flower-speckled T-shirt she bought me last year. She does not know how to talk to me at night when I’m quiet or moody, and she thinks that if I don’t want to talk at all, it must be drugs.

She doesn’t know me. To her, I am an idea. A trophy daughter. Yet she loves me more than anything in life. She lives to bake us cookies at midnight, to see my plays at school, to buy me soft blankets and colorful socks.  For years I straddle the line between gratitude and loathing.  How, I think, how can you love someone you don’t even know?  I imagine my mother’s love like that of a child for a butterfly, so entranced by its foreign beauty that she reaches out to touch its wing, again and again, stroking it until the butterfly can no longer fly.

My mother’s illness, her keeping it a secret until the moment it finally matters, trying to protect my perceived fragility: I add this to the list of ways in which she does not know me or my needs. This time – unlike most times – I try not to resent her for it, and this time – unlike most times – I do not have to try very hard. Perhaps it is easier to love someone you don’t know.

The first time I go to the hospital with my mother is in July. We start in the waiting room, a tiny rectangle of gray chairs, where nervous patients fill out forms while doctors pass by in the hallway, smiles on their faces, coffee mugs in hand. They glance at us with perplexed expressions: This is not the emergency room, this is not the ICU. Why do you patients look so solemn?

It’s been two weeks since my mother broke the news. She is already in the waiting room when I arrive. Her face breaks open when she sees me, like a kid who’s been waiting outside of school 15 minutes later than usual and finally sees her parents driving up the hill. She beckons for me to sit next to her.  Her hand shakes as she fills out the form in her lap. She keeps smiling tentatively at me, as though she’s checking to see whether I might burst into tears at any moment, fling my arms into the air and say, “I can’t handle this!” I try to appear Totally OK by glaring at everyone who looks at me.

“All families here for the liver transplant evaluation, please follow me.”

The woman who leads us to the conference room is the spitting image of Babysitter Barbie. I think: “This must be the intern.” A detached young woman from a local medical school – probably Georgetown, since this is their hospital, which would mean she probably lives in some pretty little row house on M Street and eats gelato and shops at Anthropologie when she isn’t at the hospital, posing as a doctor, watching mothers’ death sentences delivered to them like the morning paper.

She is not the intern. She’s the evaluation program coordinator, one of the people who decides if my mother will live or die. She explains the evaluation process to us with a PowerPoint presentation, as casually as any of my high school science teachers. My mother and I sit with three other patients and their families, watching slide after slide of long scientific words, colorful graphs and blown-up pictures of bacteria. Afterward we are sent to a small examination room, where a team of seven or eight doctors and social workers and, of course, the financial guy, spend five hours talking to my mother and her family members to get to know her well enough to make a decision. If she is approved, her name will be added to the list of thousands of people waiting for a transplant, some of whom will die before one ever becomes available. If she is rejected, we might as well check her into a hospice tomorrow.

The doctors judge a number of criteria. They want to know that their patients are not alcoholics, that they will not destroy their precious new livers. They want to know that their transplant candidates have family to take care of them. They want to know that their patients are agreeable, compliant, that they will take their medicine on time and do what the doctors say. I stand in the back corner of the tiny room, refusing a chair, trying to look as unsurly as possible. I feel that I’ve been dropped into some dystopian novel, in which doctors make life or death decisions based on a whim, in which families are surreptitiously scrutinized, in which you’d better show love openly and obviously or watch your loved ones die. This can’t be our world, not our actual medical system. Are we not better than this?

My mother is slouched in a chair, her tattered blue sweater that I used to wear as a child now stretched over her sick, distended stomach. She looks at me before the first doctor comes in. She raises her eyebrow. Are we wondering the same thing? We’ve never been good at knowing what the other is thinking.

I’m also thinking that she should probably sit up in her chair. Compliance is a hazy term. Shouldn’t she try not to look so miserable?

I put my hair up in a ponytail, because I’m told it makes me look younger, and I think the evaluators might like my mom better if she has a young kid.

This is the day I learn of my mother’s alcohol history.

I already know of her prescription drug abuse when I was a toddler, the “witch doctor” who supplied her with pills, the hospital visits, the tentative diagnoses of bipolar and personality disorders. I know of her emotional instability, her breakdowns, her habit of biting her knuckle to keep from screaming. To learn that my mother was once a severe alcoholic, that she has already been on the brink of death once in my lifetime, still falls within the realm of what my imagination can grasp. Yet there is something unimaginably real this day: standing in the corner of a cold hospital room, watching my mother squirm and stare at the wall, hearing her stutter and try to communicate the details – the wine-stained solo cups, the hidden empty bottles – a whole life of which I know nothing. The doctors ask about every instance she’s consumed alcohol since the last time she went to rehab over 15 years ago.  A glass of wine at a Passover Seder three months prior deeply concerns them.

“If you drink any alcohol after a liver transplant,” the gastroenterologist says, “your new liver will likely fail.”

“I’m done with drinking,” my mother says.  How she tries to sound earnest – how stilted she sounds instead.  “I’ll do anything it takes to get better.”

My feet have fallen asleep by the sixth time this exchange repeats itself, and I don’t know how much more I can watch. Watching the woman who raised you, your adult mother, groveling for her life before a group of how-long-until-lunch doctors. Why isn’t she more friendly, why doesn’t she dress better? How appropriate that my mother’s ultimate cause of death will be her inability to fit in. How unforgivable of these people to condemn her for it.

I can tell my mother doesn’t like answering these questions in front of me. I’m surprised by how long it takes her to kick me out of the room. It doesn’t happen until one of the doctors starts to interrogate her about her brief stint in a mental institution 18 years earlier. I find this funny, because it’s the one thing I’ve heard all day that I already knew.

One week later, we find out my mother has been deferred.

The evaluation committee tells her that if she will complete a six-month alcohol rehabilitation program, they will consider putting her on the list.  One month earlier, my mother was told she had five months to live.

Ten weeks after her diagnosis of terminal liver disease, I give the authorization for the hospital to take my mother off life support – a job I’d never realized would legally fall to me. Had I known, I might have asked her how she felt about life support, perhaps one night at dinner, any of the hundreds we’d had together, just casually mentioned it over a bowl of macaroni Just In Case, so I’d know what to do when the moment came. Three days before her death she begs to be unplugged – to be given a glass of wine and her daughter and to be left alone. I am the one who convinces her not to claw the breathing tubes out of her mouth.

There’s still hope! Still a chance for a transplant!

Do I really believe that?

It does not matter who believes what, because as always, my mother does as I ask.  She keeps the tubes in, and goes into a coma shortly after. She never wakes up.

* * *

My mother was always the one who drove when we went on our drives. For my contribution, I made the mix CDs. We rotated through the same 12 songs every time. Our drives lasted all the way through high school, all the way into college, up to the beginning of that final June. We would sometimes argue in the car. I hated when she stopped to take a cigarette break, because I was terrified of wasting the daylight.  She did not like when I tried to play any music other than that first CD I made, the one she said was our favorite.  Most of the time we were just silent.

As I look back and think on how little I felt that my mother knew me, and how little I ultimately knew her, how time ran out before either of us could understand what we’d missed, I think about those drives. I think about sitting next to her, in silence, staring out the window at the cow-spotted fields and distant mountains. Connected in our unspoken thoughts, our misunderstandings, we chased after the horizon: two half-strangers racing the sun. When it was finally dark, we would wander into a diner – admit defeat, split a burger – and find our way home.

Amanda Bestor-Siegal is a freelance writer based in New York City, where she works in theater/ new play development and as an editorial assistant for the Brooklyn Quarterly.

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