Life and how to live it

The time immediately following winter solstice is bittersweet, a time to remember the people and events in our lives that made the years past worth remembering and the years to come worth cherishing.

These essays exemplify the human spirit and give lie to all the hatred and fear we’re seeing on the national stage. While in one way, they’re about loss, in another, they’re about hope. Have a great new year.

The enormity of the news didn’t sink in fully, not at first, even after my doctor uttered the words: “I’m sorry, we did find cancer.” My husband, Dave, and I had only the faintest sense that evening that someplace off in the distance our lives had been hijacked forever.

Early 2014 brought major head and neck surgery, then six weeks of chemotherapy and radiation. Eight months later they found cancer again, so it was Christmas surgery and more of the same. When a scan last June showed new tumors, the outlook turned bleak. The cancer—a rare type called metastatic squamous cell carcinoma of the head and neck of unknown primary—had gone systemic.

Like all doctors, oncologists want to offer patients hope. Who can blame them? But with a little prodding, I was able to learn the approximate truth. A Stanford specialist gave me six to nine months to live. “But there are people who do a lot better,” he said. My surgeon told me, “Months to a year.” My University of California, San Francisco, oncologist said, “The average is a yearish … but nobody’s average.”

So there it is. I’m 59. I have terminal cancer. And I’m dying in a yearish.

Born and raised in Los Angeles, schooled at UC Davis, and fortunate member of the team that brought SN&R to Sacramento in 1989, it might have been natural for me to write or blog about all this as it was unfolding. I’d reported about end-of-life issues before, especially after my brother Marty Welsh, a physician from Placerville, died of Lou Gehrig’s Disease five years ago. But I just couldn’t bring myself to write about my cancer, however much I admire the people who find the voice to go public with their tales. I didn’t feel I had anything new to offer.

But I’ve turned a corner on that somehow and feel ready to explore some of the questions that emerge for people who face a grim diagnosis. Like this one: How do I best spend the time I have left?

I feel perversely well right now—having recovered from the worst side effects of treatment and not yet experiencing the corporeal failure that is to come. I’m continuing to work part-time until I can’t anymore. I love what I do and am lucky enough to have purpose, supportive colleagues and employers who are good friends, and a job where I feel I can make a difference.

Besides writing, I plan to spend much of the time that remains with Dave, my friends and our big crew of a family. We have arranged gatherings with various people of importance in our lives. My sister and brothers and our clan joined for a summer family reunion on the Monterey coast. We checked into the same hotel and laughed and celebrated one another’s company. My niece came over from France, bringing her young daughter and new baby. We sobbed quietly in each other’s arms as farewells were said, both knowing we’d likely never see each other again.

Dave booked us a cruise to Alaska in late August, and we luxuriated in the beauty and expansive time together. And we’re planning a few other special trips.

But mostly we’ve just become devoted to taking pleasure in the small things. We read and laugh. We work. We walk and watch movies. I was told: “Don’t skip dessert”—so we don’t. We play the Neville Brothers and dance around the living room.

We’ve taken to getting up early a few mornings a week and driving out to see the sunrise over the flatlands of Yolo County. Our dog, Scout, thrusts her head out the window from the backseat, passionate on behalf of the here-and-now. We’ve become startlingly aware of how differently the sun announces itself into the world each day.

In her famous essay “Illness as Metaphor,” Susan Sontag wrote about “the night-side of life,” a kind of parallel universe that opens up when a person moves from the kingdom of the well into that of the sick. I didn’t know it at first, but I’d immigrated to that new place the moment I was diagnosed with cancer.

I’ve been lucky enough to have friends and loved ones escorting me to and from the hospitals, clinics, chemo infusion rooms, scanning stations and radiation lobbies. But many who arrive unexpectedly in cancer’s kingdom have come alone. The rail-thin man in the corner with the clogged IV, the elderly woman in the stunning purple hat waiting for her turn on the radiation table, the state bureaucrat who took his chemo wearing a tie, the university student who arrived at the infusion center in a taxi. The solidarity I feel with the other cancer patients is almost overwhelming. Like me, they probably weren’t aware this “night-side” even existed until they arrived in it.

I’ve told my team of doctors, who have been skilled and caring, that I’m not interested in “maintenance chemotherapy” since, for me, the possible benefit would not make it worth the downslide to my quality of life and would give me little extra time anyway. I am a “do not resuscitate” person—desperate to go on living but against prolonging my dying once that process is in full swing. As an extension of this belief, I fully support California’s new “right-to-die” law, though it does not go into effect until 90 days after the current special session on health care closes.

My UCSF oncologist, a skin-cancer specialist doing cutting-edge work in personalized medicine, is now attempting to extend the time I have left by getting me in clinical trials that don’t come replete with debilitating side effects. I am utterly grateful for his efforts. I’ve started gene therapy—injections of pIL-12 with electroporation—that has shown promise in other patients. If I’m fortunate and push hard enough, I might also get access to the breakthrough immunotherapy drug pembrolizumab (the “Jimmy Carter drug”), though it is not yet FDA approved for my type of cancer. Any of these might net me more months, maybe even years before the decline … and boy, would I take that time!

Still, my basic trajectory is unswerving.

I sometimes worry about my ability to exit life with grace and humor. And what if I’m bad at suffering? I admit I can fill up with fear. But what’s the point? For counsel, I turn to my favorite philosopher, Lao Tzu: “Be content with what you have / rejoice in the way things are / When you realize there is nothing lacking / the whole world belongs to you.”

Then, I try to focus on the present and my gratitude for having lived a charmed life that includes Dave, my family and devoted friends, and work that has always held meaning for me. In the big picture, I see the universe as brilliant and the fact of life on earth as extraordinary. But I know my teeny, tiny piece in it all is coming to a close. Still, it’s impossible for me to imagine going to sleep and then … nothing.

But I will not awaken that next morning and drive out to see the sunrise. And I will not walk with my husband on our daily stroll with Scout out onto the greenbelt behind our home. And I will not marvel at the news of the world as my iPad streams its conflicting arguments for hope and despair about the fate of humanity. And I will not share further moments of warmth and joy with my cherished friends and family. And I will never, ever hold Dave again.

Letting go will be difficult.

But death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from that breach, I will continue to radiate a few simple reminders: Time is limited. Life is miraculous. And we are beautiful.

Melinda Welsh is the founding editor of the Sacramento News & Review and served as its editor for the better part of two decades. A shorter version of this essay appeared in last Sunday’s Los Angeles Times.

The city of Gatesville, Texas, lies 37 miles west of Waco. Of its 15,945 residents, some 2,600 are employed by the city’s five prisons and one state jail.

Around 9,000 are incarcerated, roughly 58 percent of the city’s population. Prison City.

I’m familiar enough with the geography and architecture of Central Texas to conjure mental images of these sprawling sand-gray compounds, but I can only imagine what it’s like to live in one. My understanding of their inner life relies on fictional portrayals and whatever information makes it to the public record.

The public record informs me that somewhere inside Gatesville’s Alfred D. Hughes Unit, a prisoner I’ll call Daniel Jay is a decade into serving two concurrent 14-year sentences.

The date on these charges is still capable of sending little chills up my spine. December 23, 2005. Two counts of intoxicated manslaughter.

One for each of my parents.

This week, it will be 10 years since the night Daniel Jay had too much to drink at a Christmas party and smashed into my parents’ van. Mom died instantly. Dad was responsive when police arrived but bled to death a few hours later in the hospital.

I am still the same person, but much of the daughter my parents knew died alongside them. I have since grown in unexpected directions, like a tree whose shape is transformed by being struck by lightning.

Up until December 23, 2005, I was a member of a close-knit Midwestern family—the kind that loves you tightly but also makes you feel vaguely guilty for growing up and leaving home.

In the early hours of December 24, I became an Orphan in the Void with no living ancestors or descendants, thanking God that my sister had not been in the van with our parents.

What do I mean by God? I mean the sensation you encounter when you are a newly minted Orphan in the Void crying exponentially into the carpet, and you can see that the Emptiness that meets your cries is alive and that there are still things in it to be thankful for.

My parents were buried in my mom’s hometown of Hubbard, Iowa, and Mr. Jay disappeared into the unfathomable labyrinth of the Texas prison system. I have seen him in person only once, at his trial. We glanced at each other for a moment, and he quickly averted his eyes.

This was not his first drunk-driving offense. At the time of the accident, he was actually ineligible for a Texas driver’s license due to prior brushes with the law. Given this history, it would not be unreasonable to conclude that he struggled with alcoholism and should probably have had access to treatment. Instead, he’s a warm body in a multibillion-dollar prison industrial complex.

He is now 54 years old, the age my parents were when they died.

The prison is his punishment, the means by which his debt to society may ostensibly be paid. In this case, “society” is my sister and me, the kids whose future ability to regard family gatherings with anything other than the dull heartbreak of orphandom was lost as a result of his carelessness.

Cause and effect. The “justice system.”

Despite his role in my parents’ death, I have a hard time feeling anything but sympathy for Daniel Jay. When I tell people this, they often react by congratulating me, as though I must have worked through some very deep anger in order to achieve a benevolent, Zen-like state of forgiveness. This reaction makes me uncomfortable. It seems to imply that “an eye for an eye” is the default human reaction to tragedy, and that perhaps I am entitled to feel somehow more evolved or self-righteous for not hating a person who made a terrible mistake, even if his entire life had been nothing but a series of terrible mistakes.

My feelings would be different if Daniel Jay had, say, walked into my parents’ family therapy practice and gunned them down in cold blood. But drunk driving is so ubiquitous as to be banal. I have several friends who have gotten DUIs through the years, and if I’m honest, there have even been times when it could have been me. This doesn’t excuse what happened, but it helps me put it into context.

Car culture killed my parents just as much as any one person’s choices did. They were sacrificed on the altar of far-flung communities where people drive 20 miles to party and 20 more miles to get home.

A culture where alcoholism, mental illness, and depression are stigmatized and those who suffer are routinely denied access to treatment killed my parents, too. This system sends people who make deadly mistakes to prison instead of helping all of us build better, more humane social structures, and it is conveniently positioned to profit off its own horrific outcomes.

According to the U.S. Department of Transportation, more than 10,000 people die every year as the result of drunk driving. That’s enough people to fill all the prisons in Gatesville, Texas, and staff half of them. A city of ghost prisons.

When I think about all that has happened in the last 10 years, the idea of spending that long in prison gives me a sense of vertigo. Does the time crawl by, like you are a child in church? Or does it pass in the blink of an eye, your body aging as though it were in a time-lapse film?

As the 10th anniversary of my parents’ death approaches, I have been thinking about sending Daniel Jay a Christmas card with a kindly worded note. Could it make him feel worse? Or could my acknowledgement that he is a human being who probably resonates in pain according to the same calendar that I do provide some semblance of solace?

Am I naive for assuming he feels anything at all?

Perhaps. But when my sister was cleaning out our mother’s home office, she stumbled on a folder with Daniel Jay’s name on it.

My mother, a bookkeeper, had once done his tax return.

It is likely that he had been in our home. I can only assume that he remembers who my mother was and is therefore aware of the light that he extinguished.

One of the unfortunate consequences of American culture’s puritanical roots is that we have done much to demonize the evil that others do, as though that evil is something we ourselves are incapable of. The reality is that Daniel Jay could be just about any one of us, or at least someone we know and love in spite of their flaws.

The many prisons of Gatesville, Texas, are a manifestation of capitalism, to be sure, but they also exist because they allow us to feel like we’re doing something to punish people who deserve it. As long as we are identifying and punishing evil in others, we can ignore the evil in ourselves.

The desire to ignore the evil in ourselves is powerful. It’s a power that builds prisons and can rationalize turning a profit from pain.

I don’t want to punish Daniel Jay. I want him to get better.

Emily Pothast is a musician, visual artist and writer living in Seattle. She is the frontwoman of the band Midday Veil and the co-founder of the record label Translinguistic Other. A version of this essay appeared in Seattle’s The Stranger.