What will you do when you know?

That was one of the questions we pondered today in a class at Georgetown University on genetic counseling. Judith Benkendorf, a well-known leader in the field, took us through some scenarios where patients and their families struggled with the decisions that they had to make after genetic testing was done.

How does faith fit into the questions one is asking?
How does one hear the questions underneath the questions?
And when you have two or three hard options, which one do you choose?

Despite the arguments of those who would have quick and easy answers to these situations, I have seen enough as a chaplain to know that it’s never easy. It’s never cut-and-dried. It never happens to a family that “deserves” it. And there’s always second-guessing and “what ifs” for most people after-the-fact.

As I work through my own questions relating to theodicy and human suffering, I remember stories of women who bucked up and barreled through a hard situation, thinking that they “had to.” I think of patients I have listened to as they tell me about abuse. Of women who turn to cutting or drugs or bulimia/anorexia to anesthetize an inner pain. Of families stretched to the core of their relationships in dealing with serious illness or births with poor outcomes that they splinter in divorce or go down in the flames of bankruptcy.

These are real people. Their stories make my heart ache. And as I have said before, I think they make God’s heart ache too.

The problem is, we don’t give this pain a voice in the Church. Women are given orders from Scripture like it’s the Prime Directive. Words like “love” and “submit” get re-defined. “Pro-life” and “Pro-abortion” and “pro-choice” and “anti-choice” labels are slung around like so much… fertilizer!

A rape victim never hears that her experience is known and grieved by God. The story of Dinah (Genesis 34) is not in the Common Lectionary. Only seminarians (like I was) dare to read and struggle and write about it. It’s not pretty. It’s not easily explainable. And it’s not a soap opera that’s viewable through the lens of modern society.

The questions surrounding genetic testing also don’t fit the current landscape or  experience. You don’t hear a patient say, “you know the other day I was at the kids’ soccer game, and three of us moms were discussing what we were each going to do about our positive BRCA2 results…”

It’s a lonely place. And it can shatter a day, a life, a year, a decade as the work-up, therapies and prophylactic treatments begin to order your daybook instead of the “life” you thought you would have.

What would you do?

I thought I knew the answer to that question. Now, I know I need to think more, pray harder, listen more, and give much, MUCH less advice!

Praying in a song…