Playing the Hand

Now alone, I see how the past is helping me to move ahead. It’s easy to conjure up memories that fill me with laughter, or that make me yearn for the hectic days before life totally changed. These recollections always take me back to the teamwork that my husband and I developed over the years, and that guided us through a long and complex, fatal illness.

Together, we made a decision to fight back with as normal a life as possible. We faced hurdle after hurdle, debilitating treatments, discouraging news, but we were stubborn enough to remain productive. We held onto strong commitments to our work—his as a physician and teacher, mine as a journalist.

We hung on to the light touch. I like to look back on ordinary moments—teasing him, “If you don’t stop bringing home healthy seeds and grains, I will throw away our dishes and get you a bird feeder,” rolling my eyes when he told me that his patients thought he was God, enjoying his smiling audience as I practiced a Mozart sonata, dragging him out into the garden to watch the opening of a tiny rock garden iris. Even now, I can get nostalgic for countless hours I sat on my coat in the infusion room, editing a story while he slept through hours and hours of treatment.

Sometimes he was the bold warrior, on the run from the hospital where he worked to the hospital where he was being treated. Though he could no longer run marathons, he exercised and read and stuck to a demanding schedule of patients and meetings, while I conducted interviews, met deadlines for articles and speeches, also dreaming up adventures we could still enjoy when we could no longer travel. We were living our lives, making some adjustments, but not giving in.

In January 2002, at just under age 67, he lost his long and courageous battle with lymphoma. During the upheaval that followed, I relied totally on what I had learned from him during those 15 years of struggle: What counts is how you play the hand you are dealt. How many times I heard those words. Not that I always wanted to.

But without him by my side, I still carried his influence. I was determined to show my adult sons and daughter that I was no slouch either. I felt off balance. I felt lonely. But at the same time, I felt an urge to explore. I would ask myself, will I ever feel comfortable again? And at other times, I would wonder, what’s out there for me?

It was challenging to keep going. I had no real sense of a goal or direction. I just knew I had to put one foot in front of the other, eyes open, ears open. Within months of having my whole world turn upside down, I did a favor for physicians who had cared for us. I agreed to share my experience with end of life and grief by “teaching” medical students in courses my husband had taught for decades. How ironic that I was now an expert at something “medical.” But as it turned out, what I thought I was doing to help others was an unparalleled opportunity for me.

Students arrived at my classes from many hours of learning about the newest discoveries of the genome project, or from learning to examine patients in the hospital. They told me they found my story compelling. Their questions were sensitive and probing. And they thanked me for providing insight into the most painful parts of life.

My instinct was to write them letters of thanks. The chance to interact with so many intense and compassionate young people showed me today’s version of the eager first-year medical student I had married 45 years earlier. It was a rare privilege to have a close look at people entering the field that he had embraced so long ago with all of his intellect and heart.

I felt lucky to have this way to revisit the life of medical students, activating the values and aspirations of service, compassion, and learning that we had chosen at age 21, and that had then formed the basis of our work and our family life.

The values were familiar and well ingrained. What amazed me was my natural sense of connection to the medical world. I had never been active in my husband’s career, or he in mine. Yes, I had taken some phone messages, heard countless phone conversations with patients and other physicians often in the middle of the night, sat outside of emergency rooms rather than staying for the last part of a BSO concert, served drinks and meals to medical students and doctors in training, perused the covers of medical journals, stood in for the absent doctor at his son’s hockey games, and listened when he needed a place to talk. I was his wife. I was not his medical colleague.

All through our marriage, my own work kept me quite occupied, to say nothing of the work of raising three kids. After a few years teaching school and developing school programs, as the mother of very young children I did volunteer work in the community, running campaigns for local political officers and other short-term, intense projects. It was at age 52—when my husband was diagnosed—that I decided to devote myself to writing. As a freelance journalist I traveled locally on assignments, usually related to human services or social justice. I interviewed experts and dignitaries, and when the huge exodus of refuseniks arrived from the former Soviet Union in the late 1980s, I met and wrote stories about the plight of many prominent scientists and political prisoners who came to live in the Boston area.

Many of them found places to live in the largest HUD-funded, low-income elderly housing development in the area, Jewish Community Housing for the Elderly (JCHE). There they lived in their own small apartments, often right next door to an east Asian immigrant, also a political refugee who might have been a writer or professor or doctor, and who also came to Boston after finding life impossible in the oppressive political climate of his or her native country. People from vastly different cultures were living side by side, each speaking a language that was incomprehensible to his neighbor, one preparing a steaming pot of borscht, the other placing dumplings in a simmering pan of soy and ginger. I couldn’t get enough of the atmosphere of welcome that an American housing organization was giving to hundreds and hundreds of these people in our community. I kept finding stories. I kept meeting heroic, daring people.

Soon I was hired by JCHE to develop and run their communications. For about 13 years until I retired in 2003, I wrote articles, letters, and grants and worked to develop media and video, all geared to making the community aware of the efforts these people were making to become American citizens, to learn to live in a democracy, and to join in volunteer activities and other cultural opportunities available to them for the first time. I found them fascinating. Think about what it means to be 86 with legs too swollen to walk on and little command of English, and required to study for a citizenship test. Imagine what it means to be 90 and go into an American supermarket for the first time. Or think of what it is like to be the author of a Russian radiology textbook, now working as a hospital volunteer transporting patients to x-ray, or a prominent engineer from China now working in a community center repairing old lamps and toasters.

In 1996, our government decided to make it harder for these people we had welcomed. To cut the costs of welfare, the government tacked a measure onto the Welfare Reform Bill that would take these immigrants off the welfare rolls if they did not achieve citizenship within five years. This meant that someone too old and physically ill to attend classes or too demented to understand and learn about American history would not be able to afford to live anywhere. At JCHE, we took a strong position that our country had a responsibility to continue to support people for whom we had opened the doors to freedom. Lucky for me, I had the job of getting this story placed on page one of The New York Times and The Boston Globe, and coverage on all the major local TV news outlets. I also prepared speeches for new Americans who traveled to the Press Club in Washington, DC, and who spoke at the Massachusetts State House and other places on behalf of their “countrymen.” The attention we called to this issue has been credited with preventing passage of an insidious act against old and poor immigrants. It was satisfying, to say the least, to be in a position to educate and influence our community and our government on issues about which I felt so strongly.

I left this exciting work after my husband’s death. It became very difficult to concentrate. My own sense of imbalance began to distract me. It was hard to control the time and energy it took to do that job well. Possibly this was a case of burnout. I began to feel more at home in my new opportunities related to healthcare. The medical school “teaching gig” had made quite an impression on me. Without the partnership that had been the motivating force in my life for decades, and certainly without medical knowledge or scientific expertise, I found to my surprise that I had some sophistication about the medical system. I knew more than I had suspected about how doctors think.

Other opportunities came my way. I became an overseer at Spaulding Rehabilitation Hospital, where an adaptive sports program was set up as a tribute to my late husband. Since I retired, I have worked hard to help this program grow and to spread its message widely. The program serves people of all ages with severe physical and mental disabilities, giving them a way to improve their health and get more out of their lives. People of any age with spinal-cord injury, stroke, brain injury, cerebral palsy, or multiple sclerosis are windsurfing on the Charles River, or kayaking, paddle- or pedal-boating, and engaging in many other water and land sports activities with a team of a physical therapist and a disability sports instructor. Children from Perkins Institute, the Doug Flutie Autism Center, and other organizations are taking part in this. We have had teachers or parents comment that they would never have expected their child to take part in or even enjoy the activity. As one adult participant with multiple sclerosis told me: “Just imagine, I can’t walk, but I can kayak under the Zakim Bridge! How’s that?” Therapists comment that adults and children gain confidence and make progress more quickly than in regular therapy sessions. When I am working with the program’s incredible staff or with the hospital’s Development team, my own work experience and my past life come together. How fortunate I am to be part of something that opens our best local resources to hundreds of people who would otherwise be left out.

Finding my way into volunteer roles in healthcare at a time when I struggled with a crucial loss of identity helped me to feel that I was not totally alone. In addition to the teaching and the work with Spaulding, I have been asked to join an advisory committee for the Harvard Medical School Palliative Care Program. With these medical connections, my past is carrying me forward in ways that I could not have imagined.

In the summer of 2005, I sold my house and moved to Cambridge. My adult sons and daughter had moved out of town. But as I explored my new neighborhood close to Harvard Square, I was listening for calls from my one local family member, my mother in her mid-nineties. Sharp as she was, she no longer thought of me as her daughter. She had started to call me her “manager.” I paid her bills. I monitored the gaps between her determination to keep active and her increasing physical frailty. Frequently, I mediated disputes between her and the caretaker whose presence enabled her to continue to live in her own home with hardly any vision and with severe osteoporosis.

I was starting over, learning how to live alone. There were seven days (and seven evenings) a week to turn into productive, satisfying times. I had to figure out how to relate to old friends in my changed life situation. I had to make new friends. At the same time, I had to make myself available to support my mother with her fractured hips and other serious problems. Was it my life I was building? Was it hers? This felt like a dilemma.

It was an unusually beautiful fall season that year. I often sat in on Harvard College music classes at Sanders Theater. What a treat to walk there for an immersion in Mozart, which I had played as a long-time adult student of piano. As I made my way through Harvard Yard to class, I felt like an almost 70-year-old version of my old self. The best way for me to keep going, I realized, would be to go back to school.

It was an intuitive step for me to send in an application to HILR. I went for the interview and faced the reality of more applicants than could be accepted. A stroke of luck in the form of a welcome to the program was something I really could appreciate at a time when I was struggling to find myself.

At first, I wondered if I was a good fit at HILR. I felt way over my head in a course about the founders of the United States Constitution, aghast at how little attention I had paid in my earlier life to the battles that had shaped our democracy. How would I ever have anything to contribute among the brilliant history buffs in the class? It wouldn’t work for me to be part of a community that I couldn’t give to.

That first semester, I was given a volunteer project at HILR to mentor a young woman who came to the Harvard Extension School from a community college. English was her second language, and she would have to develop her writing skills and strengthen her academic skills to get through demanding courses. Together we worked on language usage, sentence and paragraph structure, organization of ideas, and steps in building an argument. As incompetent as I felt in the history class, that’s how surefooted I was in guiding this passionate, intelligent and ambitious young woman through her struggle to increase her academic heft.

And how she improved! I carved up her first drafts. She went to work all day, then to Extension School classes in the evening, and late into the night she reread class texts, analyzed material, appraised my critiques, and rewrote her papers in more articulate ways. I have edited and advised people countless times about writing projects. But I never saw anyone learn more rapidly or with greater depth. She made dramatic strides with each assignment. I believe I have learned as much from her as she has from me.

We have continued to meet for weekly sessions in the early morning during the academic year. This passionate young woman has the vision of a better life for Hispanic people who have moved to our country, and she will devote her career to helping her people find their fulfillment in American life. In two-and-a-half years at the Extension School, she grew from a provisional student to one who has just earned a bachelor’s degree cum laude. She got the honors, but I feel I really got a gift in working with someone who will tackle anything if it will help her grow. One day, I will write her story. We are talking about that now.

I am inspired by creative people like my student in her early thirties, who knocks down hurdle after hurdle, determined to keep growing. I was inspired by my mother’s ability to learn new skills and work even harder at maintaining her mental, social, and physical strength as she reached her late nineties. Until her recent death at almost 97, she studied music, read the biographies of today’s leaders, exchanged ideas with her grandchildren about politics and careers. I have been inspired by the elderly immigrants with their swollen legs and their failing eyesight who taught me about adjustment and change. My husband really introduced me to the concept that no matter what is out of our control, we keep growing as productive people who leave their imprint on a changing world.

HILR has really begun to inspire me. I have found people with vision and drive who work hard to build a strong community. Among them are new friends whose talents and warmth are enriching my life. In response to the sense of belonging that I feel more and more in this program, I look for ways to contribute my own interests and abilities. One way has been through writing opportunities that have been presented to me, or that I create myself. Another way has been through volunteering to serve on the Development and Diversity committees. It is a pleasure to use my craft and my experience to help strengthen the program.

I have been developing more of a sense of ownership of my current life. I could map out ten different scenarios for myself each time I look over the catalogue for a new semester. But I still plan too carefully. I am waiting for that phone call that will curtail my activities, as in the past. My challenge now is to build confidence in my freedom from all those cares. That’s when I’ll be ready to think about leading a course. With one foot in front of the other, I’ll figure that one out.

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