The Working Title Is…Until Death Do Us Part

Last weekend, a 29-year-old woman named Brittany Maynard took her own life. She was suffering from terminal brain cancer. After careful thought, she chose a path she believed would be the most dignified given her painful and incurable illness.

I am sure it was a decision she did not come to easily. I pray she was at peace when she chose to act. And I hope those who loved her can find comfort through their sympathetic support of her choice.

I just can’t agree with her decision.

The end-of-life debate has challenged me academically, professionally and personally for more than 30 years…longer than Brittany was alive.

In the early 80s, I was part of our high school’s Forensics Club. We were super cool, despite what the yearbook photo might suggest.

I wrote a speech in support of withdrawing life-prolonging medical treatments when cure was no longer an option. I would build my case to a dramatic conclusion and stomp my argyle-sock-filled penny loafer declaring, “Simply because a technology exists, does NOT necessitate its use.”

Again, it was the early 80s. The end-of-life debate was just beginning to grab headlines, and my speech was not always well received. People would tell me that what I proposed was one step away from mercy killing. They would challenge me saying, “But what if you did nothing to prolong a life, the person died and a cure was found the very next week?”

I knew what I felt in my heart, but I learned at this young age that the most provocative debates could quickly turn inflammatory. No matter how hard I tried to articulate my position, I couldn’t truly capture what I believed.

In the early 90s, I started my decade long employment with Hospice of Michigan. It was a time of exponential growth for this model of healthcare. The board and administrators were dynamic, compassionate and smart. I was proud to be associated with an organization that embraced families during life’s most difficult days.

When hope for a cure was no longer possible, Hospice helped redefine hope for the patient and family: pain free days, controlled symptoms, making the most of every moment.

One day, I learned that one of our new patients had been consulting with Dr. Kevorkian. She had even appeared with him on Phil Donohue’s talk show discussing physician-assisted suicide.

I was perplexed and intrigued and asked my boss if I could meet with the patient. I was certain that I could convince her that Hospice, not Dr. Kevorkian, could best support her journey.

Again, it was the early 90s. This was well before HIPAA was even a thing. I didn’t work directly in patient care, but I pulled her chart and read it cover-to-cover. She was entering the end stage of ALS. She was confined to a wheelchair and had limited use of her hands. Her speech was often slurred and unintelligible. The social work notes, however, were the most telling. For many years before the patient became sick, she was a not a very nice person was now estranged from every friend and family member.

(To complete the back-story, I was 25-years-old, totally consumed with the details of planning my wedding and feeling more than a little self-important.)

I first met Marguerite in her barren hospital room. The physical effects of her disease caught me off guard, but I could clearly understand the, “Who the hell are you?” that greeted my arrival.

She was mean. And she was fighting a horrible disease. Alone.

I started to explain who I was and where I was from, and, just like in high school, I had trouble articulating my thoughts. I knew what I felt in my heart, but words failed me.

Feeling defeated, I left for a moment and went to the gift shop. I returned with flowers, a stuffed bear, magazines and some Russell Stover chocolates that my grandma used to love. The room was now not so barren, and as I babbled on about my personal love affair with chocolate, Marguerite actually turned and made eye contact. It was clear that her loneliness was more painful than any physical manifestation of her disease.

I stared into those eyes and said, “Ok, do you know why I really wanted to meet you?” Her brow furrowed, and I confessed, “I saw you on the Donohue show, and I wanted to hear all about Phil. I love that guy!”

And there it was… a smile.

We chatted for almost an hour, and she asked if I would visit again. I promised I would. As I left, I watched her struggle to turn the pages of the magazine, and so began my preoccupation with this woman and her devastating disease.

For the next five weeks, I visited most Tuesdays and Thursdays. I would bring a little something each time, but no gift was more appreciated than a simple office supply…a little rubber finger thimble that I took from my fiancé. He used it to whip through piles of paperwork, so I thought it might help Marguerite as she struggled to turn the pages of her magazines. The look on her face when we realized it worked is etched in my memory forever.

Most of the time, ok, all of the time, I got our chats started by talking about myself. I brought her my wedding planning binders and would share all the details of my impending nuptials. In the conversation that followed, she would reference her family, but I would never push. I would go back and tell her social worker what I had learned with the hope it may prove helpful in rebuilding relationships.

Early in December, I brought a swatch of the fuchsia fabric that my bridesmaids would wear. Her eyes brightened and in a combination of garbled speech and notes on her whiteboard, she told me the peonies that grew on the side of her house were this exact same color. She said in the spring she would have me over for lunch so I could see. Maybe they would even bloom before my wedding day!

On a Tuesday afternoon a few weeks before Christmas, my boss entered my office with tears in her eyes. Marguerite was dead. Dr. Kevorkian’s suicide machine had ended her life and that of another woman inside Marguerite’s home; steps away from the dormant fuchsia peony.

Again, I couldn’t find the words to explain what I felt in my heart. But now, I was angry because instead of acknowledging the patient’s depression that accompanied her terminal illness, I knew Dr. Kevorkian exploited her to advance his cause.

Time marched on, and as we moved into the new millennium, my principal role became one of caregiver. I was raising young children, caring for my aging dad suffering with Parkinson’s and assuming greater responsibility for my brother in his lifelong battle with mental illness. And as the decade drew to a close, we faced my husband’s brief illness and death.

I can’t begin to calculate the amount of time I spent in hospitals, doctor’s offices, assisted living centers and nursing homes. I can’t count how many times I thought things like, “Really, God? What’s the logic here? Why would death come to a young person with an entire life yet to live, and yet, this elderly person who suffered a stroke that rendered him in a near vegetative state has survived for years?”

I hear and understand the arguments presented by the proponents of physician-assisted suicide. I can truly empathize with the fear Brittany Maynard faced. But I continued my struggle to put my position into words.

Last week, someone whose faith-filled example inspires me on a daily basis suggested I check out Notre Dame’s daily gospel reflection. So I signed up to have it sent to my email every morning.

On Monday, my television announced Brittany Maynard’s death, and my email gave me the perspective I’ve waited thirty years to find.

Rebecca Roden, Notre Dame Class of 2012, was reflecting on Luke’s gospel where Jesus goes to the house of a Pharisee and tells him to “invite a bunch of randos” (my words, not those of the eloquent Irish alumna) to his banquet.

Neither the gospel nor her reflection had anything to do with assisted suicide, or death or dying. And yet, the author’s words sung to me.

She wrote, ”Often I catch myself thinking or acting like my life is a story about me. I discover I have fallen into assuming that I am the protagonist in my own saga, and my family and friends are the supporting cast.

Christianity, however, tells a different story—one in which this life is only half the tale, in which God is the main character. Naturally, if see ourselves as the main character in our story, we will want to be surrounded by our own particular supporting cast.

Our place is to be a true supporting character. Everyone beloved by the Lord also becomes our beloved as well. God’s concerns become ours; our time becomes God’s.”

Oh, thank you, Rebecca. That’s what I’ve been holding in my heart, yet unable to put into words.

Out time is God’s. Our life is not our story to tell alone. We are not the lead character in this drama. Our every word, our every move and every path we choose impacts a much greater story, one in which we are neither the author nor the editor. We are, simply and profoundly, the essential supporting characters.

So when I see the tiny woman reclined in a massive wheelchair, unable to communicate or feed herself, my thought of “to what purpose…?” is interrupted by seeing the nurse’s aide come over and adjust the woman’s blanket and gently hold her hand. A nurse’s aide whose job provides her the insurance she needs to pay for her son’s heart surgery. A son who, should he survive, has untold potential to change the world.

As supporting characters, we all have the potential to change the world. And as difficult as it may be, we should never knowingly discard any one of those days regardless of what we fear they might hold.

In concluding her reflection, Rebecca Roden wrote, “Christ calls us to participate in God’s story. Let us pray for the grace to follow.”

I promise to pray for that grace, until death do us part.

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7 thoughts on “The Working Title Is…Until Death Do Us Part

  1. Tina Donovan says:

    Amazing coincidence . . . Bert and I were just talking about this ND reflection passage the other day!!! We get these every day too (just another great thing coming out of ND 😃). It really struck me (especially coming from someone not much older than our girls) how spot-on Rebecca was with something that is so difficult to put into words and that applies in so many contexts. Thanks, Katie, for another wonderful entry. I always get excited when I see one of these in my inbox!

    Liked by 1 person

    • Tina, you know it’s killing me that I keep being inspired by ND. Come basketball season, I’m going to have to create some conspiracy theory about the real reason Digger matches his tie to his highlighter.

      Like

  2. Molly doherty OShea gallucci says:

    spot on and brought me to tears. To recognize and articulate our role and place in the world and in relationship with one another and God has rarely been so beautifully put in words. End of life issues remind me always that every moment of life is to be lived and not cut short or wasted. God lives on the earth in the relationships we have with one another and in the beauty of the able and disabled, the sick and well who offer us the opportunity to know ourselves and therefore God that much better.

    Liked by 1 person

  3. Marla Debbaudt says:

    Again an insightful perspective on this many sided topic. I struggle with this one myself feeling almost “lucky” that my Dad’s cancer took him quickly rather than a multi year battle where it takes him piece by piece. But, now that I read this, I guess that’s the point. It’s God’s plan, not mine. It’s not that God wants some to suffer and others to not, he doesn’t play favorites (I hope 🙂 ). But there is a message in everyone’s journey and who are we to cut those messages short?
    Thanks for this, Katie!

    Liked by 1 person

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