Leaving More Than Money – Susan J. Ellis

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Becoming One of the Grateful Dead Susan Ellis

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Leaving More Than Money - Susan J. Ellis

Susan Ellis has been living with cancer for the last seven years. Because she was told at the very start that her prognosis was bleak, she immediately updated her will. This was nothing new for Susan. She’d been updating her will on a regular basis with each new life circumstance. Susan wrote her first one at 22-a simple will crafted by an estate-planning lawyer. She had just graduated from Temple University in Philadelphia, where she was planning to stay and work. Her parents lived in New Jersey. The indomitable Susan Ellis, preparing for her fourth round of chemotherapy. Most new college graduates don’t think of wills, but Susan’s relationship with her parents was exceptionally close. “In case something happened,” she said, “I couldn’t imagine not sharing my final wishes with my parents. We were a very tight unit.”

The only child of Holocaust survivors, Susan understood the fragility of life from an early age. All four of her grandparents, as well as aunts, uncles and cousins, had died in concentration camps. The relatives who escaped their native Austria were dispersed around the world. Susan’s parents were spared the fate of others because her father had skills as a tool and die maker. This expertise secured them a special visa to escape to Australia, where they lived for nine years before immigrating to the U.S. to be closer to Susan’s mother’s brother. Within six months of settling in Manhattan—when Susan’s mother was 38 and her father 47—they were delighted by their news of a late-life baby, especially because Australian doctors had diagnosed her mother as infertile. Susan has been surprising people ever since.

By the time Susan was 30, her father had died. Ten years later, the relatives who’d escaped the camps were all dead, too.

Professionally, Susan wanted a job working with delinquent children. She found a position with the Philadelphia Family Court in a prevention program requiring a community volunteer program. At age 23 with no volunteer management training, the top executive figured she’d be fine for this role! In her five and a half years in this job, she fell in love with the program’s volunteers, eventually began to train other leaders of volunteers in other agencies in the city.

In 1977, Susan founded Energize, Inc. to assist organizations of all types—health, human service, cultural arts, schools, business, government agencies—to start or strengthen their volunteer involvement. Knowing how little had been written on the subject, she co-authored By the People: A History of Americans as Volunteers (by Susan J. Ellis and Katherine Noyes Campbell, now in its third edition).

“There have always been volunteers,” said Susan. “Let’s face it, volunteers-built Noah’s Ark. But there were no professional management guides.”

Between the 25 books Energize published and Susan’s continuing invitations to provide training to others on the subject, her career continued to widen. Over the next decades, she worked with clients across North America, Latin America, Europe, Asia, and Australia and New Zealand. When her company took off, she again updated her will, naming the individuals she wanted her executor to approach to take over the company in the event of her death. “My parents certainly didn’t want the business and there needed to be a succession plan. I also wanted to make sure that my authors would never lose their copyrights.” When Susan married in 1984, she went back to her attorney for an estate update. Given that her husband had three children by a previous marriage, she wanted to make sure that her mother would be taken care of. Seven years later, when the couple divorced, Susan again headed to her lawyer’s office to update her will.

It was about this time-in the mid-1990s-that I met Susan. We were both on the faculty of the Learning Institute for Nonprofit Organizations. Every year for five years, we filmed a series of lectures for PBS. I’ll never forget the first faculty meeting. Susan and I come from similar stock and both look like little dumplings, though Susan has black hair and I am a bottle-redhead. Another significant difference between us: Although we were both 48 at the time, she was at the top of her field and internationally known; I had started my company just three years earlier, which made me a novice, intimidated by the rest of the faculty.

Susan was a major alpha female and brilliant. I liked her immediately. She kept asking the director a barrage of relevant questions: Who is going to be listening to these broadcasts? Professionals? Newcomers? What assumptions should we make regarding their skill level? Will this be aired in other countries where the content would need to be broader to include cultural differences? Would this be shown with subtitles? If so, would we be able to work with the translators? The director didn’t know a single answer and was clearly under-medicated to do battle with Susan. The entire faculty recognized that this guy was out of his league. Perry Mason was an amateur when it came to interrogating this unprepared witness. As the director’s sweat stains dripped almost to his waist, it dawned on me that I had not thought of one of Susan’s audience-focused questions. For the first time in three years, I really understood what it meant to understand one’s audience. A gigantic lightbulb shone over my head.

What I came to most appreciate about Susan was that, during down time, she generously coached me and continues to do so to this day. There was no question that I couldn’t ask her, and I usually had a myriad of consulting, publishing and speaking questions. When I was having trouble getting paid for international speaking gigs and aware that Susan was speaking all over the world, I asked how she got the international clients to pay. “I don’t always get paid,” she said. “I love to travel, but, as a single woman, I would have had to pay a supplementary charge for a single room, sit at the back of a bus and hope that some kind couple invited me to join them for dinner. Obviously, this setup was not appealing.

Since this was the International Year of the Volunteer, I let it be known that for one year I would speak anywhere if I didn’t have to open my wallet.” In the following years, negotiating these overseas trips, Susan would mention that if a client had someone who would put her up for a few days, she would love to see the country and would lower her fee based on this travel opportunity. “My clients were thrilled to have some extra consulting time, and I loved seeing the country through their eyes. The result was that for talking about one of my favorite subjects - helping organizations make the most of their resources - I was picked up at airports around the world, feted and housed in people’s homes, and given so many presents that I often had to buy another suitcase to bring them all home.” I had made friends with a genius, a bold one at that. And I’ve continued to learn from her, most recently about setting short-term goals as we age.

When Susan’s mother died of Alzheimer’s in 2004 and Susan no longer needed to set aside funds for her care, she once again headed to the office of her estate lawyer, who by now had been with her 40 years (and still is). Much as she wanted to keep her life’s work alive, Susan had no heirs and didn’t think anyone else would want to run her 30-year-old company. So, she chose a group of friends and colleagues who agreed to be on a transition committee if her health failed. Their charge was to make sure that Susan’s efforts to support volunteer management - her legacy -continued, in whatever form they saw fit. When diagnosed with cancer in 2011, Susan changed her will again, asking her transition committee to ensure the future for her library on volunteerism, one of the largest in the world.

The library consists of: Susan’s writings on the subject, which comprise 17 books, chapters in other books, journal and newspaper articles; other people’s work on volunteerism in various languages; articles and books from other authors that Energize has published; the libraries and archives of two of her late mentors; and the company’s comprehensive website Energizeinc.com, which contains thousands of pages on volunteerism. As both a teaching and archival organization, Energize has captured the centuries-spanning trajectory of thought leaders in the field. Because Susan has a large selected “family” but no living relatives, she is working on a plan to leave her life’s work to the volunteer sector. The easy choice would have been to sell the company and donate the money to a volunteer organization. As an alpha female, an entrepreneur and a community builder, however—not to mention a teeny tiny bit of a control freak about how few of the large organizations deploy their volunteers well—she is seeking an alternative path.

In her most recent will, Susan and her various consulting staff decided that, while the publishing and training work of Energize could continue as a business, the company’s large resource archive needed to continue as a nonprofit to serve the volunteer sector. In December 2018, she bequeathed money to ensure that a transition committee is explore what to do with her life work, and what form Energize should take in the future, and how to raise money for such services.

The cancer was “supposed” to end Susan’s life in five years, but she was noncompliant. At the first symptom in 2011, she didn’t futz around googling symptoms or ignoring them. She went immediately to a doctor. A hysterectomy and a round of chemo and radiation brought two years of remission, but the cancer returned in her lymph nodes. A determined warrior who still had things to do, she marched back to the chemo chair. Last year she was accepted into a drug trial for her kind of cancer, and while the treatment helped her cancer it also caused a brain tumor.

Susan wanted to share how she was doing with her multitude of friends, colleagues, and employees around the world, so she created “Magical Medical Monday,” a weekly e-mail blog on her journey through the foibles of our health system. Her column features the views of both an oncologist and her primary doctor, whom Susan calls Saint Lisa. The blog reveals poignant, frustrating and devastating moments and is Oscar Wilde-witty. One of my favorite examples: “If you are one of my male friends and tend to be squeamish, you might want to skip this section because it discusses my lady parts.” Those on Susan’s mailing list often had something to say and grew to know one another. Said Susan, “One wisenheimer friend wrote, ‘The next time I hear you saw a doctor, I want to hear that he bought you dinner and that you were both undressed later.’”

Instead of meeting a neurosurgeon for dinner, Susan met several in the operating room to remove a cancerous brain tumor. The surgery left Susan disoriented and weak, and, in December 2017, she went on hospice. Her executor emailed her friends that it was just a matter of time before an inoperative blood clot in her leg would break off, go to her heart and kill her. Across the world, friends and colleagues felt the blow. I felt that the world would soon lose a force of nature. But Susan is nothing if not full of surprises. After a few months of not dying, she was released from hospice care. Susan is one tough little spud. The question is whether her cancer is more tenacious than she is. Housebound for almost a year since the latest operation, Susan looks forward to engaging in real life again.

“As I continue this mysterious medical journey, I want to feel that I am still contributing to things that matter.” If nothing else, she has had more time to plan for the future of Energize, Inc. than she had anticipated. In reflecting on her life, Susan said she would have loved to have children and a second marriage. But if she had, “I wouldn’t have had the opportunity to experience so many people from different cultures. I feel my life has had real meaning. If I had children, I wouldn’t have been able to do as much to enhance a field I love. I feel good about my legacy. When I can drive again, I’ll feel even better!”

Lessons learned

For nonprofit leaders: Many donors own intellectual property, which can often be a far greater gift than a check with lots of zeros. Probably the most famous example of this type of gift was in 1929 when author J. M. Barrie left the rights to Peter Pan to Great Ormond Street Hospital in London. His legacy has provided a significant source of income to the hospital ever since. The rights were supposed to last only 50 years, but Prime Minister Lord Callaghan successfully proposed an amendment to the copyright law granting Great Ormond Street Hospital the right to royalties for all things Peter Pan, from peanut butter to films to e-books.

You need a policy about what kind of gifts you are willing to receive. You could find yourself with a piece of land that is a toxic waste site, or an old farmhouse that is an Antiques Roadshow dream. Sometimes you have to take the time to really explore unusual gifts such as intellectual property and unique properties. Who would have guessed that a book written decades ago would support sick children when we eat peanut butter?

For donors: We have more to leave behind than a pot of money and the proverbial garage full of junk. We have copyrights. We have patents. We have collections. Some are financially valuable, others offer only sentimental value. Look at your life holistically. If you have children, friends or relatives, find out who wants what. A dear friend of mine was dying and wanted to return the suit I had given her to get married in. I wanted her opera tickets, which she graciously passed on since no one in her family wanted them. These tickets—third-row seats for four— are priceless to our family. Every time we go, I think of her.

Discuss who would want to have a specific item. One pair of mega-millionaires wanted to leave a collection of rare French porcelain to their grown children. But none of the kids wanted to pay for the hefty insurance, plus, one lived in Manhattan and didn’t have the space, so the parents bequeathed the collection to an art museum. The couple received a tax deduction as well as the joy of seeing their collection displayed in a room they funded during their lifetime and endowed in their estate plan.

Don’t make assumptions. In my case, I no longer fit into the suit I gave my friend, and the art collector’s children didn’t want their collection. Look for creative ways to share the things that you or your donors have collected and valued. Susan’s committee will shepherd the body of work she created for generations to come.




About the Author

Carol Weisman
Carol Weisman is the President of Board Builders and is an internationally known speaker, author, trainer and consultant. Carol specializes in volunteerism, fundraising and governance and has served on 40 boards and has been president on 9. She has written 11 books including her latest offering, Becoming One of the Grateful Dead: Where's there's a will, there's a way. Carol is currently on the faculty of Everyone Ready. She is a past faculty member of the Learning Institute for Nonprofit Organizations and was an adjunct professor at Washington University in St. Louis at the George Warren Brown School of Social Work. Carol has a Master's Degree in Social Work from Washington University in St. Louis. Carol was a pediatric oncology and hematology social worker at St. Louis Children's Hospital and Children's Hospital National Medical Center.