Into the Wilderness: Parenting a Terminally Ill Child
by Emily Rapp, guest contributor
“You feel your obligation to a child when you have seen it and held it. Any human face is a claim on you, because you can’t help but understand the singularity of it, the courage and loneliness of it. But this is truest of the face of an infant. I consider that to be one kind of vision, as mystical as any.” ~from Gilead by Marilynne Robinson
I woke up and held my son for a long, long time. I’d been gone for three days at the National Tay-Sachs and Allied Disorders Family Conference and had missed him terribly. Driving through Boston on the way to the airport, I told my friend Kate that it was so difficult, so impossible even, so disastrous to imagine feeling that way forever. The missing, the ache.
We agreed that, say what you will about heaven or where we go or visions of the afterlife, the truth about someone being dead is that they’re gone from this life, right now, here on earth, with you. That particular person has been removed from your particular life. That’s the gut punch and there is no balm for that, no platitude, no prayer, and, I would argue, no belief even that will fix it. My son will be dead within three years and there’s nothing I can do about it.
Sex, Death, and Secrets: A Reporter’s Notebook
by Sasha Aslanian, guest contributor
On January 1, 1990, Jeff Johnson, a gay man and pastor of First United Lutheran Church, and Ruth Frost and Phyllis Zillhart, lesbian pastors of St. Francis Lutheran Church are ordained in San Francisco. Both churches were suspended in 1990 and expelled by the ELCA in 1996. (photo courtesy of Extraordinary Lutheran Ministries)
My old English prof used to say “The Victorians were obsessed with death. We’re obsessed with sex.” I made an unexpected discovery on a recent assignment: sex and death have something in common: secrets.
In August of 2009, the Evangelical Lutheran Church in America (ELCA) voted to allow gays and lesbians in committed relationships to serve as pastors. As a reporter for MPR News, my assignment was to follow up a year later on the impact of the vote. I stumbled into a news story: the church was in the process of reconciling with partnered gays and lesbians who had previously been unwelcome. In July of this year, the ELCA added seven people back to its roster in San Francisco. Then, this September, they did the same with three women in Minnesota.
Two of the Minnesota women, Ruth Frost and Phyllis Zillhart, were the first lesbian couple to be ordained without the blessing of the ELCA in San Francisco in 1990. They invited me to their home for an interview.
For the next 70 minutes, their story spilled out, spanning a sweeping slice of a social revolution moving rapidly through in our times. They told of coming out, falling in love, losing jobs then gaining them, and feeling God work through them during the AIDS crisis and hospice chaplaincy. Their story transcends Lutheranism. It’s personal, yet tethered to movements on both coasts, inside churches, seminaries, universities, courthouses, and workplaces.
“When you’re a change agent,” said Frost, “you act where you are. Some people do in the secular arena: political activists, social activists. Our arena was the church. I’m third-generation Lutheran clergy.”
For me, the unexpected part of their story was how they connected their work in hospice with the battle for inclusion in the Church. Zillhart and Frost began their ministry in San Francisco just as AIDS was ravaging the city. As they plunged in to help the men, their partners, and their families prepare for death, the two women saw opportunities for forgiveness, reconciliation, respect, acceptance, and love.
The “tape” at the top of this post is my favorite, but I had to leave it out of the final radio version. My news piece needed to cover the ordination, expulsion, and eventual embrace — already a tall order — and I wasn’t sure my editor would let me wander into end-of-life stuff at all. Thankfully she did, and it gave the story more depth. I think it also showed what Frost and Zillhart have been striving to show all along: there’s more that unites people than divides them. We all have secrets. Death is a universal unburdening of secrets.
Sexual orientation can be just one of them.
“There isn’t a family that doesn’t have a secret that they yearn to share and talk about the hurts and hopes we all have,” said Zillhart. “Our difference is more obvious, more politically charged, people do a lot of fund-raising around how scary we seem — that feels electrifying — but the differences we have are all among us. The commonalities are so much deeper.”
Frost adds with a note of amused exasperation, “I would love to get past being an issue in the church as a lesbian. I’ve been a professional Lutheran lesbian all my life. It’s time to be meeting one another in deeper ways than that affords.”
Frost and Zillhart show just where that depth can take us.
Unedited Interview with Frost and Zillhart (mp3, 71:00)
This interview is what I call “a spigot interview” — the story spilled forth with very little coaxing. Their narrative connects their individual lives to a larger canvas of social and religious history.
Sasha Aslanian is a reporter for MPR News and creator of MPR News’ Youth Radio Series. From 2000 to 2008, she produced documentaries for American RadioWorks, the national documentary unit of American Public Media. Aslanian has won awards named for famous news men: Edward R. Murrow, Lowell Thomas, Heywood Broun and Eric Sevareid. She is a graduate of Grinnell College.
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Dr. Byock sees this as a human opportunity and challenge. Medicine is remarkable, he knows from the inside, and will continue to get more remarkable with the passage of time. But we must “grow the rest of the way up” and acknowledge that we have yet to make one person immortal. Even while we fight for life with all the tools at our disposal, we have to reckon with the reality of death. The good news, as he tells it, is that there are riches to be gained in that reckoning. That edge of life — which our miraculous medicine allows some to perch on longer than ever before — can be a time of unparalleled repair and celebration. Like it or not, as Dr. Byock says, death completes us. These days more than ever before, we can shape that moment of completion together with those we love.


