Something Terribly Wrong with this Picture

A Role Reversal of a Different Kind

Rose and I have known each other for over 40 years, so when I read her message on May 24^th that began with the words “Dear Jackie and Marius”, I knew what was coming.  Rose’s next words were, “I am deeply saddened to write that A. passed away around noon”.  

Her 18-year-old nephew A. had lost his 21-month battle against a very rare form of cancer.

You may wonder why I’m writing about a young person who has died, when Role Reversal has focused on a loved one who suffers from cognitive decline.  Let me explain.

For me, A.’s death represents a significant role reversal, since his parents and sister S. (20) have lost their son and brother.  This is not the way things are meant to be.  There’s nothing normal about parents who lose a child and a sister who loses her 18-year-old brother.

I saw A. only once, but I’ll never forget the encounter.  Marius and I were on vacation in the United States.  Rose, Carolyn – my Role Reversal partner – and a mutual friend of ours met in New York City to spend a weekend together.  Rose’s brother T., his wife A. and their two children, S. and A., lived close to the city.  They, Rose, and her mother met us for lunch.  S. was 5 and A. was 3 then.  A. was very talkative and made sure he and his sister didn’t get “drowned out” by the adults!  Perhaps A.’s talkative and funny nature was a foreshadowing of where his passion would later lie.

I imagine A.’s journey to have been nothing less than an emotional rollercoaster ride and a physically exhausting race against a very tough and tenacious opponent.  I’d like to share with you how A.’s 21-month odyssey has left its mark on me.

Heart-wrenching news

In July 2021, Rose spent a weekend with Carolyn and received a phone call from her brother T. that something was “not right” with A..  Carolyn sent me an email paraphrasing the conversation between Rose, who is a doctor, and her brother.  I was working from home when Marius came downstairs and handed me a print-out of Carolyn’s email.  The only thing he said was, “Something’s not right within Rose’s family”.  My immediate reaction was, “Oh my God, Rose’s mom (she was 81 at the time)”.  Marius said, “No, it’s not Rose’s mom.  It’s A.”. My jaw dropped and I could feel my heart sink to my stomach.

About 1&1/2 weeks and several tests later, Rose informed Marius and me that A. was diagnosed with a sarcoma in his abdominal cavity which was difficult to treat.  The news took the wind out of our sails. Marius and I stared at each other in disbelief and utter shock.

I had no doubt A. would have a difficult road ahead of him. At the same time, I knew I would be there for Rose and the family.  

Against all odds

During my many conversations with and messages from Rose, I learned how loving, selfless, dedicated, and determined A. was.  Even after he received his cancer diagnosis, A. wanted to go to school.  He started his junior year in high school in September 2021 and attended classes either physically or online while undergoing treatments.  A. was a devoted actor and singer and continued starring in productions.  He played the main character Amos in the musical Chicago, which took place in January 2023, just four months before he passed away.  A. was also committed to his volunteer work as a teenage advocate, helping others his age and younger who had experienced bullying.

During his senior year in high school – and despite continuing treatments and longer stays in the hospital – he mustered up the energy to apply to colleges and universities.  In February 2023, A. visited his first-choice college.  He auditioned and was accepted!  I sent A. an email congratulating him on being accepted to his first-choice college, where he had planned to pursue a Bachelor degree in Fine Arts.

It was obvious A. was determined to live his life as many teenagers do…doing what he enjoys and having fun with his friends and family.  At the same time, he was very aware of the ominous cloud hovering above him.

A. did not let a life-threatening illness keep him from fulfilling his dreams.  Unfortunately, A.’s road to fulfilling even more of his dreams came to an abrupt halt.

The fragility of life

On Thursday, March 23^rd, during my train ride from Bern to Zurich, I received a text message from Rose.  She wrote, “Last Friday was a difficult day for A. after the visit with the oncologist”.  I became short of breath as I continued reading.  When I was finished, I sat there in disbelief and pinched my arm to assure myself I had not just awakened from a terrible dream.

The quintessence of Rose’s message: The medical options to cure A.’s sarcoma had been exhausted.  The pendulum had swung from “life-saving” to “life-extending”.  I wrote, “Dear Rose, boy, what can I say?  That is indeed a VERY hard pill to swallow…”.  Only one thought raced through my mind, namely, “This cannot be happening.  We’re talking about an 18-year-old boy. Is this really the beginning of the end?”.

On Monday, May 22^nd, I received another text message from Rose which I read to Marius before I left for the office.  When I read the words “liver dysfunction”, Marius and I looked at each other and didn’t say a word.  We sensed the end was near.  Two days later, A. passed away, and the many dreams we were sure he had wanted to fulfill were blown out like a candle.  When I read Rose’s message, Marius and I were devastated.  We cried and hugged each other.  I had planned to call my brother and his family that evening, but I was too heartbroken to do so.

I could only imagine what A.’s parents, sister, and extended family – including Rose – were experiencing.  I recalled the words of Herman Van Veen, one of Marius’ and my favorite stage performers and musicians.  They go something like this:

“A woman who loses her husband is a widow.
A man who loses his wife is a widower.
A child who loses his or her parents is an orphan.
But what do you call a parent who loses a child? For this, there are no words.”

Remembering someone dear

At the end of May, I spoke to Rose, and we cried, and cried some more.  I asked Rose what A.’s favorite color was, and she said, “Purple”.  I ordered a floral arrangement for the funeral with purple flowers.  A.’s favorite color has brought about a special connection between us.

In June, Marius and I spent a few days in northern Italy.  During one of my hikes, I passed by a spot where magenta-colored flowers were in bloom.  

Thinking of A. during my hike in Italy

I took a photo of the flowers and sent it to Rose, writing, “I immediately thought of A.”.  

During the month of July, the lavender in our garden is in full bloom.  I took a picture and posted it on A.’s mother’s Facebook page with the comment, “A. and the three of you are omnipresent here in Switzerland”.

Our lavender as a “trigger”

A. received his high school diploma posthumously.  His mother was given his diploma during the graduation ceremony in June.  On her Facebook page, she posted, “He wanted that diploma”.  Despite all of the odds, A. did everything in his power to get it!

I learned so much about A. from his Aunt Rose.  I would have loved to have known how his life would have continued to unfold.  Would he have been a famous actor?  Would he have become the next Michael Bublé or Frank Sinatra?  Unfortunately, I’ll never know.

What I do know is that A. will always have a special place in my heart.  And every time I see something purple, I will immediately think of him!