The Dance of Connection

Rescuing women and men from the quicksand of difficult relationships.

The Saddest Happiest Most Inspiring Boring Cancer Story

Here's the saddest happiest most inspiring boring cancer story you'll ever read.

This is a story of big tragedy and big friendship. And this is a story about how friends can do more than just say “Let me know if I can help.” Space confines me to the Readers Digest version, with a focus on the practical, although this is a story of love.

THE COUPLE:

Lynn Bretz and Janet Hamburg were major “movers and shakers” at the University of Kansas in Lawrence. They were lifelong partners, lovingly committed to each other, to the University, and to their work. They were my friends and neighbors.

THE TRAGEDY 

Within the span of 10 days, Lynn faced the diagnosis of terminal esophageal cancer and the unexpected death of her beloved partner Janet.  Janet died days after the couple flew from Lawrence to New York to consult with a cancer specialist at Sloan Kettering Hospital.

LYNN BEGINS TREATMENT

Following Janet’s death, Lynn stayed on for 6 months of cancer care at Sloan Kettering. She moved in with her devoted younger sister Anne Bretz-Aronoff whose New York apartment was close to the hospital. Anne was Lynn’s principal caregiver up until Lynn took her last breath in her Lawrence home. Anne is among the strongest, most loving people I know, but she couldn’t do it alone. Life’s most difficult times demand the proverbial village—or two.

THE TWO VILLAGES

In response to the double tragedy, two support groups formed and sprang into action. They were THE NEW YORK TEAM based where Lynn first received treatment, and THE HOME TEAM here in Lawrence Kansas.

I'm not a list maker, but Lynn was. I was so impressed with how the two teams functioned that I sat down with Lynn toward the end of her life and had her make a list with me. When it comes to helping our friends and family, grace is in the details.

THE NEW YORK TEAM

In Lynn’s own words, here’s what THE NEW YORK TEAM did.

 * They showed up individually at first at Anne’s apartment in the immediate aftermath of Janet’s death to grieve with me.

*My friend Tedde first suggested creating a group, what we first called a “circle of care.” So we met, every Sunday afternoon in my sister’s apartment for several months, trying at first to follow organizing suggestions from a book called “Share the Care.” Two of them, Kathryn and Sally, lived 90 minutes out of town and drove in to the city each week to meet with the group.

• If I had a test or medical appointment coming up, someone would volunteer to go with me or to check in with me afterwards.

• They assigned each other to run errands or come by the apartment and just be with me or help me go for a short walk or go to lunch, so I didn’t have long stretches of alone time.

• Kathryn set up an online calendar so everyone could see my appointments and receive notices on who was volunteering for what or if someone was needed quickly.

• Sally loaded my iPod with music, and hunted down music I thought I might want to use in a memorial service for my partner, Janet.

• Barb came by every Monday at noon with homemade soup that we would share.

• Tedde, a lawyer, researched several legal issues in New York that came up regarding Janet’s death and accompanied me every other Saturday when I had to go to the hospital to be disconnected from my infusion pump.

• Helen, a cancer survivor, helped with medical questions. She made a point of joining me and my sister for many biweekly appointments with my oncologist.

• Karla helped us order and install a set of blinds for my sister’s apartment so that I could control the sunlight when I sat by the windows in the living room.

• They all helped my sister and I think through housekeeping issues – mundane things like how to locate a dry cleaner in the neighborhood who would pick up and deliver laundry; the most economical way to supply the apartment with the large quantities of spring water I was drinking, etc.

• Several helped me plan a memorial service for Janet. Helen and Frances, who happened to live in the same building, hosted the service and reception. Kathryn and Sally, who are printers, designed and printed the program. Julie offered to lead the event; her husband performed a piano piece for it. Karla created a wonderful video of photos and video excerpts of my partner for the memorial, scanning photos she and Kathryn had solicited from friends and family. Karla updated that video for a second memorial event I held in Lawrence months later.

• Frances put me in contact with an artist friend of hers who helped me pursue an idea I had of making a memory quilt from clothes of Janet’s that I felt sentimental about.

THE HOME TEAM IN LAWRENCE

Here’s Lynn’s run-down of what THE HOME TEAM in Lawrence did.

 * Team Lawrence checked on me weekly at a minimum, helped arrange transportation to my chemo sessions in Kansas City, accompanied me to doctor’s appointments and helped me problem-solve things that came up.

 • One Team Lawrence member, Cathy, who had been a financial and legal adviser for me and Janet, took charge of financial and legal concerns, which were considerable. She retrieved documents from files in the study at my house. She created legal forms to give my sister and Cindy, a Team Lawrence friend who was a former nurse, legal authority to make medical decisions for me. We formally gave another friend, Sharon, power of attorney for financial matters so that she could help Cathy by writing checks to cover my bills.

• Sharon set up a site for me on Caring Bridge, a website that helps friends and family stay connected on health updates. I send messages to Sharon, which she posts along with updates on my chemo appointments; readers post messages on a guestbook page. I can’t tell you how many times I’ve looked up the site to read the guest messages to buoy my spirits.

• Janine collected and monitored my mail.

• Cathy Fed-Xed countless items I needed to sign for insurance and medical purposes.

• Cindy checked my house regularly, had the refrigerator cleaned out, took my car in for a tune up, and saw that snow was shoveled when needed.

• Cindy and Sharon cleaned out my garage so that when I returned to Lawrence for a short visit in December, I could park my car in it and avoid cold weather.

• Cathy and Cindy cleaned out Janet’s car and donated it to a local nonprofit.

• As fall turned to winter, Sharon pulled warm clothes from my closet and shipped them to me.

• When I was up for a weeklong trip back to my home, Kathryn accompanied me. Lawrence team member Cindy ferried us to and from the airport, while Sharon filled the refrigerator with food.

*They inspired another Lawrencian to organize a “birthday card blast,” resulting in my receiving more than 100 cards on my birthday.

Lynn told me that the two teams stayed connected and updated each other. In the six months Lynn was in treatment she didn’t see a hospital or doctor bill – all had been taken care of by her Lawrence team.

LYNN WAS NO GIRLFRIEND MAGNET

Prior to Lynn's  diagnosis, Janet was the expert at cultivating and sustaining relationships, so Lynn didn’t pay much attention. That changed quickly with Janet’s death, as Lynn learned how critical friendships were to her health and well-being and that sustaining these relationships is a two-way proposition. When friends showed up, Lynn tried to acknowledge their caring energy and meet it with her own, as much as her health allowed. “The more I become engaged in my friends lives,” Lynn told me, “the more I fill my own life.”

GIVING BACK

“In moments of frustration” Lynn told me “I wondered if things weren’t just terribly out of balance: tragedy had rendered me a ‘taker,’ my best friends were ‘givers.’"

For all of us, being useful is the greatest antidote to despair.

Of course, being of service in the life cycle of birth and death is a gift in itself.  Lynn gave back a lot, even when she couldn't see it. I think Lynn’s “Who did what” lists are also a gift, serving as a template and testimony to true friendship and community.

Neither Lynn nor Janet would have wanted me to write a tear-jerking blog about two untimely deaths that no one saw coming, and that ripped a great big hole in the fabric of Kansas University and the Lawrence community. Both women were practical and hardworking, with a towering competence, a drive toward making a contribution, and a commitment to hard work well done. Their style of living and loving was whole-hearted but decidedly unsentimental. What Lynn and Janet would have wanted, I think, is for me to share the details of how their communities responded to tragedy so that other communities might learn something from the example.

THE 'TAKE AWAY"

"What's the take away?" a teacher friend asked me, questioning who would identify with the care Lynn received, or plow through the tedious lists documenting what her two teams did for her.

My friend had a point.  It's hard to identify with Lynn's story. Most of us would be lucky, in the face of prolongued illness and impending death, to have a responsible partner, a few best friends, a sister like Anne, even one of the above.

Maybe one small "take away" is this:

"Let me know if there's something I can do to help," is a well-intentioned sentiment. But it's rarely received as a true offer to help.

"Can I shop for you today and clean out your refrigerator?" is worth a lot more. So are all the little actions like "checking-in" emails and phone calls, an offer to come over and wash someone's hair, or an invitation to a meal, movie or outing.  If you can organize a team effort, yes, do it.

Let Lynn's story be an inspiration, along with Cappy Capossela and Sheila Warnock's book,  Share the Care.

A lot of real life consists of list-making. Like I said, grace is in the details.

______________________________________

Janet Hamburg      August 7, 1951 - September 4, 2010

 Lynn Bretz            December 18, 1949 - May 27, 2012

 

 

 

Harriet Lerner, Ph.D., is best known for her work on marriage and family relationships and the psychology of women. Her book The Dance of Anger has recently been reissued.

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