On My Own

by Diane Rehm

  Mike Rosenwald wrote a follow-up piece for the Washington Post. It was headlined FOLLOWING CRITICISM, NPR HOST DIANE REHM SCALES BACK EFFORTS IN RIGHT-TO-DIE DEBATE. He noted that NPR and WAMU had issued a joint statement saying I would continue to host shows on the topic but would remind my audience of my affiliation with Compassion & Choices.

  Then, a month later, on March 15, 2015, came a lead editorial in the Sunday edition of the New York Times, the first sentence of which read: “Last year, the radio host Diane Rehm watched in agony as her husband, John, starved to death over the course of 10 days.” The editorial went on to discuss current laws allowing health-care providers in five states—Oregon, Washington, Vermont, New Mexico, and Montana—to assist in hastening the death of terminally ill patients, and urged other lawmakers around the country to consider how successfully and responsibly Oregon’s Death with Dignity Act has been carried out since it went into effect in 1997. The law “gives doctors the right to prescribe a lethal dose of medication to patients who are terminally ill and who have been advised of their alternatives, such as hospice care. The law provides layers of safeguards to ensure proper diagnosis of the disease, determine a patient’s competency to make the decision, and protect against coercion.”

  And so, without fully realizing what was happening, with those articles and that editorial, I had emerged as what the Washington Post called a “key force in the right to die debate.”

  The fact that laws had now changed in six states indicated the beginning of a change in thinking about this profoundly serious subject. Lawmakers in twenty-six other states and the District of Columbia had in recent months introduced so-called aid-in-dying bills to make such a humane option available to millions of Americans at a time when the nation’s population of older adults is growing. This past June the California state senate voted to allow physician-assisted dying after the California Medical Association withdrew its objections, and Governor Jerry Brown signed the bill into law. I pray that this will signal the way for other states to follow suit. And with Canada’s Supreme Court decision, I am optimistic the issue will gain further traction among states in this country.

  Each and every one of us should have the right to choose. The idea of suffering as being noble does not persuade me that extending life for the sake of someone else’s religious beliefs or social philosophy is fair or even reasonable. Let each of us make our own decision.

  Unlike the Netherlands, where euthanasia is permitted when an individual is terminally ill and a doctor is present to carry out the act, these six states allow doctors to prescribe medications only to patients who have been deemed to be within six months of death. At least two doctors must make that declaration. The individual might or might not choose to take the medication, but—as has been said many times by Barbara Coombs Lee, president of Compassion & Choices, which lobbied for the groundbreaking law in Oregon—having that medication in hand provides a sense of comfort and control over one’s own life.

  In November 2014, when Brittany Maynard decided she would take her own life after being diagnosed with inoperable and terminal brain cancer, she moved from California to Oregon with her husband and family to put herself in the care of doctors there.

  Brittany declared she would end her life on November 1, 2014, with her husband and mother by her side. And she did exactly that, reportedly waking that morning with her decision firm. She indicated that the time had come to take the life-ending medication. In her public statements before her death, she advocated for aid in dying for all who make such a choice. She chose to end her own life without suffering the final degradations, the ultimate decline, in a bed of her own, with her family supporting her and standing by her side. This was my husband’s choice, and I felt precisely the same way he did. But he was denied this option.

  I do believe I can be of use in this very controversial movement, carrying on for both myself and John. It feels ironic that I have been thrust into an ambiguous situation with regard to my employment. Somehow the right to die seems such a basic issue, one that perhaps should not be left up to state legislators. Why should someone who may have a totally different set of beliefs and values from my own have the legal authority to decide whether I should continue to live and suffer or to die peacefully? It makes very little sense to me. And the idea of a so-called slippery slope is disproven by the fact that, since the Oregon Death with Dignity law was first passed in 1998, a total of only 1,327 patients have received life-ending prescriptions, of whom 859 have actually taken their own lives.

  As for life-prolonging measures, I have decided that if, on physical examination by my physician or via self-examination, I discover a lump in my breast, it’s too late in my life for me to undergo the traumatic and painful procedures associated with either surgery or radiation and chemotherapy, or both, although pain isn’t, and has never been, for me a deciding factor in treatment. These treatments might very well succeed in prolonging my life, for which I would certainly be grateful, but not at the cost of the rigorous and debilitating effects that such treatments would likely entail. I’ve been fortunate to have lived a healthy life, with only minor bumps along the way, and I’m content with what I’ve had and am ready to go before life becomes a misery.

  Needless to say, this is a highly personal choice, and one determined by my age and circumstances. Certainly if I were younger, even by ten or fifteen years, or had a family dependent on me, or if John were still with me, I might have a very different perspective. I completely understand and sympathize with those who are determined to hang on to life as long as is remotely possible—Susan Sontag is a formidable example. But paradoxically I prefer to go when I still have something to live for—and on my own terms.

  I have begun to formulate an idea. Just as John’s death was an ending to that chapter of my life, by his death he has actually given me a final gift, the impetus to carry on in a new and vital way. Once freed from my station’s and NPR’s ethical constraints, I shall do all I can to promote the right of aid in dying. When invited, I will speak out on what I believe should be our right to choose, and help to formulate ways to communicate that idea to members of state legislatures and to the general public. I believe this country is at a tipping point with regard to this issue, much as it was with gay marriage several years ago. And now that a chance meeting with a Washington Post reporter has given my position on the issue a voice, I shall use it.

  I find it interesting that, even as I consider what lies ahead, I begin thinking about my own death—not in a morbid way, but wondering whether it will come sooner rather than later. How long do I have to live? And how long do I really want to live? How soon might I succumb to some disease or disorder lurking or developing within me? Do other widows and widowers wonder whether they really want to go on after a life partner dies?

  For some time I focused on what I believed would be the death of my career. But no longer. Now I know I do not have to give in to self-pitying thoughts, because I do plan to go on. I plan to have new experiences, meet new people, travel to new places. Most of all, I plan to continue to be a fully engaged human being.

  Closure

  This week I received a card from the widow of Malcolm Browne, a Pulitzer Prize–winning New York Times journalist and photographer and a dear friend of John’s when they attended Friends Seminary together in New York City. Malcolm also died after a long battle with Parkinson’s disease. The last time he and John spoke on the phone was at least a year before Malcolm’s death. At the time, John reported that Malcolm was suffering greatly, wheelchair bound, and barely able to speak.

  Something his widow, Le Lieu, wrote to me when John died really struck me. She said, “Malcolm died two years ago and I miss him even more.” I, too, am finding that, as the days go by, I miss John “even more.” I think I had anticipated that the grief would be extremely intense immediately after he died, and that, as the days went by, that grief would grow less and less intense, especially because he’d been gone from my daily existence f
or so long before he died. Instead, what I find is that I spend more and more time thinking about him, seeing and hearing flashbacks of our time together. I rarely think of the sad times, but memories of our good times keep running through my brain, demanding attention, making me smile. Then, even as I smile, the sadness overcomes me, as I wish there were a way to redo so much of our lives together.

  Malcolm’s wife, two years after his death, misses him even more. I think that’s what’s happening to me as well. Had John died a more peaceful and comfortable death, I wonder whether I’d feel different. I also wonder whether some of us believe there’s a “right way” for us to grieve; whether, given that so many of us have read Elisabeth Kübler-Ross’s book about the stages of grief, we’ve come to believe there are certain designated periods allotted first to denial, followed by anger, bargaining, depression, and finally acceptance. But even in these very early months following John’s death, I seem to follow no pattern whatsoever. Some days I feel just fine. I smile, I laugh, I interact happily with my friends and neighbors. Other days I’m sad. Still others, I’m really down and can’t talk to a soul. I just want to be alone with my memories.

  Is there something wrong with this? Somehow, I don’t think so. I think it’s my own way of dealing with a profound loss, the most profound since my parents died, sixty years ago. How can I not be on this roller coaster of grief when each day feels different, when some thought or image or sound reminds me of John and the life we lived together?

  No one, thank goodness, has said to me, “It’s time to move on.” And I sincerely hope no one ever does, because I know that some part of me will grieve forever. That doesn’t mean I’ll be weeping or wailing on a daily basis. What it does mean is that there will always be a deep sadness in my heart for the loss of John, for the life we built together, for the glorious moments of love we shared, and even for some of the most profoundly difficult moments we experienced together.

  I don’t believe in closure. What does it really mean? Does it mean the closing of a door, the locking up of memories, the refusal to allow a flow of consciousness that may involve some measure of grief? There’s rarely been a day since my mother and father died when I haven’t thought of them. How could I possibly experience something like “closure” about my husband’s death? Can there be such a thing as closure in regard to the death of a child?

  Recently there have been several airline crashes into the sea, one in which no trace of plane or bodies has been recovered, another in which a black box has finally been found, along with the remains of the plane and dozens of bodies. And a third where it was determined a pilot deliberately crashed a plane carrying 148 passengers into a mountain. Will those who’ve lost loved ones in such disasters ever achieve “closure,” even if the bodies of their beloved relatives or friends are recovered? I doubt it.

  Death is final, but grief is ongoing. The extent to which we experience it may or may not depend on the depth of love or even the depth of regret we feel. But it is our own experience. No one else can define it for us. In fact, perhaps grieving, at some level, is the ongoing effort to continue to live with those we’ve lost. When the tears flow from my eyes, I can almost hear John speaking to me, comforting me, and feel him drawing me close. It’s my grief, my very own, and I know that as I experience it and allow it to be part of who and what I am, I shall grow.

  Who Am I?

  For fifty-four years I have been a wife. Now I am a widow. Am I someone new? I was part of a couple. Now I am a single person. When we married, if I had a question, John could answer it. Now if I forget something, who will remind me, or who will know what I mean to say? What if, at some point, I develop dementia? Who will remember for me? Who will remember what I have forgotten? Where will my memories be? Will they reside at least in part in my children, whose lives are busy creating their own memories? And what of my grandchildren? They will know who I am through only the barest of their parents’ memories.

  For the first time I am struck by the realization that who I am is in large part a lifetime of memories, from early childhood on. Where do those memories go when we die?

  I once asked John if he could have any time of his life back again, which years would they be? What were the favorite years of his life? It didn’t take him very long to answer that they were his teenage years at Friends Seminary. I was not surprised. He had lived alone with his mother during those years at Friends, an only child whose mother doted on him.

  Through all these years I’ve defined myself as wife, mother, friend, and radio broadcaster. As I move into this new phase, who and what shall I be? If no longer wife, surely still mother, but in very different ways from those of earlier years. I’ve learned from my children to keep my distance, to listen to each of them more carefully, and to honor their decisions without probing.

  As a grandmother, I can have more fun. Should the children come and stay with me for a short or long period of time, I can learn from them and they, one hopes, from me. We can enjoy each other in ways I didn’t allow myself to enjoy my children when they were young, because I was so tied up in knots about my career and my relationship with John.

  When John and I first walked into this apartment, gauging whether it might be right for us, the first words he whispered to me were “Diane, look at the light!” And indeed, the apartment was totally free from shadow, wide windows opening onto parkland fourteen stories below, sunshine pouring into every room.

  I found myself thinking about those first moments in the apartment when, last night, I began wondering whether John had “seen the light” as he lay dying. And, alternatively, whether he is telling me, from wherever he is, to “look at the light.” To look ahead, to plan, to investigate with excitement what possibilities lie ahead. He planned carefully for his family, so that each of us could move forward at different stages of our lives.

  Now, in this new place in which I find myself, I hope I, too, can see the light ahead, that I am open to new avenues, new views of life, knowing that what is past lies only in my heart, and that possibilities of the future, if I allow them to enter, await me.

  Last night, after I’d written about the light he saw and the light ahead, I dreamed I saw John as a young man, standing totally naked in a bathroom while I lay in bed looking through the door watching him shave. Then he came to me and took my arm, which was inside a red knit sweater. He began unraveling the edge of the sleeve, stitch by stitch and row by row, until he had removed about an inch of the sleeve. In the dream, I asked him why he was doing that, why he was in effect changing the look and length of my sleeve. His response: “Because it looks more modern this way.”

  However one is given to interpret dreams, the message I took from this one was that he was encouraging me in my decision to move on from the daily work of broadcasting, to search for something new, something “more modern.” Sometimes I dream and don’t remember. This dream was powerful and totally recalled. Thinking about it gives me a measure of comfort and reassurance. John is with me, if only in my dreams, easing me into new pathways, taking my hand along the way, helping me to learn to be unafraid.

  Years ago, when I first began my broadcast career, I was so deathly afraid every morning before going on the air that I was almost paralyzed inside. No one other than John knew that; no one seemed to notice it. He and I talked about this fear a great deal, and one day he said to me, “Just let the fear in. Don’t try to fight it. Let it be a part of who you are.” Words I shall never forget.

  So now I move forward, still grieving, but knowing that my husband will always be part of my life, a huge part, and I shall love him forever.

  A Mass Memorial Service

  On April 26, 2015, nearly a year after John’s death, I attended a service for family members and friends of those who’d donated their bodies to George Washington University’s medical school. The service was produced by the first-year medical students, the class of 2018, to express their gratitude to the donors and loved ones. In the program, they wrote:<
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  It is often said that our donors were our first patients, and we believe this to be true. Your loved one has given us an education both inside and outside of the classroom whose value cannot be overstated, and this is an act of graciousness we will honor throughout our careers.

  John would have loved the service, one of music, dance, and poetry. He would have loved the reading of the names, first name and last initial only, to preserve anonymity. He would have remembered that Jennie had called the gentleman on whose body she was privileged to work Herc, short for Hercules, because he was such a large and presumably strong man. He would have appreciated hearing of the joy of discovery about which these young students spoke, their wonder at the variety of our species, the intimacy of the relationship between student and subject, the reality of recognizing the body as a miraculous work of art. One student spoke of being humbled and inspired by the realization that “the pain passes, but the beauty remains.” Another said she had gained reverence not only for life but for death, and this service would help her as she moves forward to contemplating her own mortality.

  I, too, was inspired by these students, their reflections, and the honor with which they viewed the human beings whose lives they could not know but whose bodies they were touching, holding, examining with such care and gentleness. John R. would have been pleased to have made his donation.

  Retirement

  My career has given me extraordinary gratification, more than I could ever have imagined it would. Being on the radio for more than thirty-five years, doing a program I first inherited and then made my own, creating something new and exciting, has given me immense satisfaction. I have not only met and talked with the most fascinating people in the world but learned from all of them.