Wednesday, June 8, 2016

Karen and Harriet

My Aunt Karen was born with a muscle wasting disease that the doctors said was like Muscular Dystrophy, but for some reason they couldn't name it that. They told my grandparents that she would probably not live beyond the age of seven, a prognosis they later changed to age sixteen. My grandparents did everything they could to give her a good life, taking her to medical specialists, revival meetings for healing prayers, and always providing a happy, positive, and energetic environment for her grow up in. When she was fifteen, they became interested in the teachings of a particular church. Its ministers told them that God promised to heal the sick and that Karen could be healed. Although the church normally only baptized adults, Karen was baptized at the age of fifteen. Then the ministers anointed her with oil and prayed for her healing.

She wasn't healed, but she didn't die at age sixteen, either. She graduated from high school and opened her own business, typing papers for college students from the schools near their north Portland home. Her reputation for speed, accuracy, and reasonable rates brought her plenty of work, and she was soon on the schools'  "Blue Book" lists. This meant that she typed only theses or dissertations of graduate students. Her business thrived and her general health remained stable over the next twenty years until her late thirties or early forties when she was hospitalized with diverticulitis. As a result of having her wrist and hand immobilized for an IV line, she lost the ability to type, which forced her to close her business. She told me how humiliating it felt for her to apply for Social Security Disability, which she referred to as “going on Welfare.” But she remained interested in life, kept busy with various hobbies, and always looked for ways to be useful to others despite gradually declining health and increasing discomfort.  She died of breast cancer in 1998, four days before her fifty-fourth birthday.

I was at the public library one day in 2005 when I came across a new book, Too Late to Die Young: Nearly True Tales from a Life, a memoir by Harriet McBryde Johnson. Like Karen, Johnson was born with a muscle wasting disease, and she grew up thinking that she would die young. But she decided at that if she was going to die young, she might as well die doing something that was important to her, beginning with going to kindergarten. She became an attorney and joined the fight for the passage of the Americans with Disabilities Act. Along the way she discovered many others like herself, people with muscle wasting diseases who also lived "too late to die young,” most of them living into their fifties. Harriet died when she was almost fifty-one. Unlike Karen, Harriet was an atheist. She never asked to be healed.

After Karen's death we told each other how her doctors had said she would die young, and we said how thankful we were that God had extended her life. When you want to believe something, it's only natural to interpret events to fit those beliefs. There’s even a name for it: confirmation bias. But the more I thought about the last fourteen years of Karen's life, the harder it was to reconcile the idea that a loving, merciful God had prolonged her life by decades only to let her suffer the indignities of a colostomy, increasing and continuous pain, a loss of financial independence, and struggles with depression before she finally died of breast cancer.

It seems more likely that Karen had the same type of muscle wasting disease that Harriet McBryde Johnson had. Not everyone in my family agrees with me about this. They think that God had some higher purpose that we can’t comprehend, and that "everything happens for a reason." That’s comforting if you don't think too hard about what "everything" is. It’s not that everything happens for a reason; it's that sometimes terribly unreasonable things happen. And despite what it says in the Book of Job, there not much to be gained by thinking that it’s God’s will.

What does all this have to do with children whose parents deny them medical care? It's just this. There's simply too much ambiguity about purported instances of healing for parents to put their faith in prayer to the exclusion of seeking competent medical care for their children. If you think that Karen's extended life was an answer to prayer, how do you explain Harriet McBryde Johnson's additional years (which, incidentally, were far healthier than Karen's)? And what of the many others, like Harriet, who also lived too late to die young? The simpler answer is that the doctors were mistaken, not realizing in the 1940s and 1950s that some strains of muscle wasting disease don't kill people when they are young. And if there was no healing, there was also no divine refusal to heal, or lack of healing because someone lacked faith.

If God is good, why would He ever want to see your child needlessly suffer or die? No God worthy of worship would demand such a thing, especially of a child. How can we?

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