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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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The Working Title Is…A Most Improbable Life Coach

In 2011, the Harvard Business Review reported that Life Coaching was a $1 billion-a-year industry.  In two years time, that figure had doubled.

Not bad for a term that wasn’t even added to the Merriam-Webster Dictionary until 2012.

Just last month, it was reported that pop star Ariana Grande’s Life Coach, who was responsible for keeping the 21 year old singer “centered and healthy,” was so incensed by Grande’s pompous personality that he quit.

(#onelessproblem)

Over my lifetime, I have been blessed with many relationships that have kept me centered and healthy: loving family, skilled professional mentors and the very best of friends.

I have also gained incredible strength and perspective through the relationship I share with my Life Coach. Our bond dates back to 1981. Our weekly encounters happen most often on Sunday, but with crazy schedules, sometimes I have to postpone gaining this insight until Monday.

No, it’s not exclusively religious in nature, although I have been fortunate to receive weekend inspiration and spiritual guidance from compassionate Catholic pastors and an exceptional Orthodox Jewish Rabbi.

My Life Coach brings perspective to every relationship in my life and has helped me build my bucket list, count my blessings and face my fears…all in less than 20 minutes each week.

Not surprising when you consider that my Life Coach is….

 

 

 

 

 

The Sunday New York Times Obituary column.

Believe me when I tell you there is much to learn within these poignant lines of text.

I’ve invested a few moments every week honoring the legacies of people I will never know by carefully reading the final summation of the lives they lived. As a result, I now believe that every single person who crosses my path has a fascinating story to tell.

We may not all be natural storytellers, and maybe we don’t even appreciate the beauty of the tale we have to tell, but if the right questions are asked, I find the story comes together in a dramatic and unforgettable way.  And so, I ask.

It’s how I came to know my Orkin man was actively involved in prison ministry following his daughter’s incarceration for a white-collar crime. He kills bugs by day, saves souls by night and every other weekend. He should write a book.

In the last few Sundays alone, I read about a woman who, at the age of 12, was responsible for shepherding her mother and five siblings from China to Hawaii to avoid the threat of kidnapping of families of high-ranking government officials.

I read about a woman who was involved in the final modification of combat aircraft for US Naval forces in the Pacific Theatre.

And, I read about a Fulbright Scholar turned physician-scientist who made major contributions regarding human skin conditions such as cutaneous porphyria.

I looked it up, and I suggest you don’t.

Very often my Life Coach expands my horizons through trips to the dictionary. One fella was graphically described as an oenophile, which looks like it would be something super naughty, but actually is something that I aspire to be someday.

A couple weeks ago, two different people were acknowledged for their unique and elaborate gift giving, noting in particular their distinctive gift-wrapping abilities. I assume that means they weren’t as excited as I was when Hallmark debuted the convenient gift bag/tissue paper/curly ribbon combo package. Food for thought.

Each Sunday, I define the things I pray will be considered for my obit and the things I pray will be excluded.

For example, I would be happy with “Friends and family will miss (her) intelligence, sharp wit and internal clock which always knew when it was 5pm,”  but would be fine avoiding “a courageous battle with ocular melanoma.”

I’d be good with “remained active, involved and engaged until (her) death,” but would like to steer clear of “complications related to Alzheimer’s.”

I really hope my life never dissolves into “she had a strong affection for cats and especially appreciated their company in the later years of her life,”  but I’ll jump at the opportunity if it means forever avoiding “predeceased by her daughter.”

Each week, my Life Coach impresses upon me a very important point…tomorrow is promised to no one.

As a result, each morning when my eyes open up to a new day, I recognize it as an incredible gift.

And now, if you will excuse me, it is suddenly important for me to find a kick-ass way to wrap this gift I have once again been given.

kmp

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