The purple quilt of courage

Between the ferocious anger and tearful relief that characterized the responses of the most ardent activists to the recent Supreme Court decision about the Affordable Care Act, there are many more Americans who, regardless of any legislation, simply devote themselves to living, working, and praying for a million smaller healthcare solutions every day. These are the people who bring hope to the broken, relief to the suffering, and courage to the desperate in the life and death, sickness and health struggles that take place every day. Let me tell you about a few of them--the prayer quilters of Hudson, Ohio--and what they meant to my sister and to me.

In May, I with my brothers and sisters, received awful news about our sister Maureen. She, after an 11-year struggle with breast cancer, was told by her longtime doctor that there were no treatment options left. The shock of this news prompted Maureen to call me, her closest sibling, to explain.  

Maureen never was very good at explaining things like this because a part of her simply would not countenance, let alone speak about, the thought of death. But, she did her best. She told me that her doctors thought it was time for a break from treatment, a respite that might offer time for a creeping neuropathy, likely caused by years of chemotherapy, to recede. This, she noted, might give her the chance to regain some of the strength, feeling, and function that had been sapped from her arms and legs. With some skepticism, I bought the story because when I’d last seen her in March, Maureen remained quite determined and very much alive.  The plan, she said, would be to set up for hospice care at her home—the only non-hospital treatment option open to her—and hope for the best.

Maureen always maintained that she had beaten the odds, year after year, through sheer “stubbornness,” a signature trait of her character. This trait saw her through everything from athletic achievement (a varsity letter just two months into her freshman year in high school), to years of reconstructive surgery after a devastating automobile accident, to news a decade later, at age 39, of an aggressive breast cancer. While she passed the age of 50 in March, Maureen’s resilience had long ago passed from practical fact into family legend. A lesser soul might have died long ago. Maureen simply refused.

In early June, Maureen, now bedridden, got another shock. Doctors told her that she had a carcinomatous meningitis—a spread of metastatic disease throughout her brain and nervous system.  This, not chemo-induced neuropathy, was the cause of the advancing paralysis that now confined her to a hospice bed in her home.  And this, I learned after a bit of medical research, would not respond to any respite:  it would mean her death.  

A day or two later at church, I shared this news with a fellow parishioner, Lori, who had recently recovered after treatment for a serious lymphoma.  She listened sympathetically, then took me aside and said, “Let’s get your sister a prayer quilt.” She walked me into her parish office and took out a bag containing a number of neatly folded, nearly finished quilts, beautifully hand-made by a group of local women from several churches to comfort the seriously ill. “Which one would she like?” Lori asked. After a moment’s thought, I pointed to one made with purple and orchid flowered squares, framed in crisp white. “That one,” I said.

“Ask Maureen what it is she would like us to pray for,” said Lori. “We’ll finish the quilt with a series of knots. Each knot is for a prayer.” Hmm, I thought. Part of Maureen’s stubbornness had always been directed at God—the author, she thought, of her many troubles.

“I don’t know, Lori,” I said. “If Maureen thinks this is something religious, she might refuse.”

“Just ask her,” said Lori.  I agreed.

The next day, I called Maureen, who was having a good day. She was able to answer the phone right away.  “Hey Moe,” I said after a few minutes of conversation, “some ladies I know found out you were sick and they want to make you a quilt.” From a thousand miles away, I could hear her choke up with emotion—For Me? Really? —so I continued: “They said that you could pick the color. They showed me some patterns and I thought you’d like one that’s made with purple and orchid flowers,” I said. “How does that sound?”

She paused. Maureen, a woman who recalled receiving hand-knitted mittens and slippers as a child, and who sent simple, homemade blankets to us for Christmas, was still surprised by the thought of such kindness from strangers.  Wow,” she replied. “That sounds fine.”

“OK,” I said, adding, “Moe, there’s just one more thing they need to finish it. They want to know what you want them to pray for, something that you need.”

Maureen knew she'd been had. Though she composed herself before replying, she couldn’t mask a mix of frustration and sorrow. “What do you think I need?” she sobbed quietly. It was a statement, not a question.

I paused then said, “Courage. I’ll ask them to pray for courage—for you and the girls.”

There was a bit more to our call that Wednesday, but no more talk like that. Instead, brighter, happier talk of the kids, an upcoming wedding, and a few jobs that I—or one of my brothers—might do around her house on our next visit.    

On Saturday, the day that I mailed the package containing that lovely quilt to her Florida home, Maureen fell into unconsciousness. Despite that, she was never alone. Her daughters, my parents, several of my brothers and sisters, her best friend, and a Catholic priest continued to visit and speak to her.  Early Sunday morning, she died at home with a hospice nurse and her daughters at her side.  

The quilt arrived a couple days later, shortly after my family and me, and just a day before Maureen’s funeral. At the church, a niece, the older of two of Maureen’s daughters that lived with her, asked me what to do with the quilt, now beautifully finished with dozens of small white knots and a handmade label containing a short prayer under the inscription, “Maureen.”

“Keep it, to remember your mom,” I said, thinking that someday, I’d need to explain more about what that quilt means to those who gave and received it.

The following day, I learned from my niece that after a tiring funeral, her teenaged sister, Maureen’s youngest, wrapped up in that quilt for a long afternoon nap.

Good, I thought. She knows exactly what that quilt means.