by Diane Rehm
My father suffered a massive heart attack eleven months later. The doctors assured us he’d be fine, but that same night at 1:00 a.m., I received a call from the hospital saying he had died. To my mind, his heart was literally broken at the loss of his beloved Eugenie.
To this day—and as I write I am seventy-eight years old—I grieve the loss of my parents, most especially my mother. I never got to know who she was, never understood her sadness, never realized the losses she had experienced, never grasped why we had such a difficult relationship. I grieve the lack of understanding between us.
I grieve for my adulthood without her, believing that if only she had lived and I’d had the chance to ask her about her life not only here in this country but with her family back in Alexandria, Egypt, I could have begun to understand her better. As it is, I will forever grieve losing her.
But does any human being really know another? John was so internally focused that it was enormously hard for him to share himself, with me or anyone else. One moment I would think I truly understood him, the next he would do or say something that would force me to reevaluate. Still, I’m grateful that, as his life was drawing to an end, he wanted to express his regret to me for the many moments, hours, months, even years, of emotional hardship we’d endured. It was a moment of clarity, and certainly a relief for both of us. Yet exactly what motivated him at that very moment, why he spoke out, he was never able to explain.
Had John died suddenly, would I wonder forever, as I have with my mother, why our lives together couldn’t have been easier? Would I have gone on blaming myself for not having been the right woman for him? I must confess that I still think in those terms. Had the woman he married been more passive, happy to be led, more submissive (as clearly I was at the beginning of our marriage), would John have been a happier husband? I’ll never know.
I do realize just how needy I was, first as a young wife and mother, and later on, too, looking for emotional support. I craved attention, and perhaps the more I expressed that need, the more defensive and distant John became. He, after all, had his own career, his own burdens of responsibility. He supported our family through my years of nonworking, volunteer work, and finally modest salaried employment. He bore the financial burden and perhaps had to protect himself from the burden of years of my neediness.
In fact, in July 1987, I wrote a letter to a dear friend who had gone to a clinic in Florida for food addiction treatment. I came across that letter recently, going back through a journal I kept for almost thirty years. Here is what I wrote:
The whole idea of addiction fascinates me, not only as it relates to food and alcohol, but as it relates, in my case, to a relationship. I’m only beginning to get a glimmer of the reality that is my addiction, but I can describe it as a fear, a basic insecurity, that comes over me when I imagine myself without that relationship, i.e., my marriage. It’s as though I have to constantly quiet the internal hunger for closeness, for affirmation, for love, for acceptance, which I don’t seem able to supply to myself. In much the same way that perhaps you feed yourself with food, I feed myself with constant thoughts and fears which, in a strange way, eat away at me, so that the only way I can be nourished is by the constant reaffirmation that Scoop loves me and won’t abandon me. The fear of abandonment is so overwhelming that I drive myself deeper and deeper into depression, knowing there is no internal resource with which to comfort and succor myself. It has to come from him and that has been my sickness.
All this is by way of saying that you’re the one at the treatment center for what is an externally visible addictive disorder. I’m the one sitting at this typewriter, who, at least by external signs, would be judged a non-addictive personality. But I know that’s not true. My ongoing struggle is to quiet the non-visible demons that drive me—not to food or drink, but to self-doubt and hunger for other’s (Scoop’s) adoration. I can’t have it, and I have to learn to be a big girl and find the love and acceptance within myself. What I’m trying to say (and doing a lousy job of) is that your willingness to confront yourself is inspiring to me, and I am trying, minute by minute, to confront the reality of my own addictive behavior. Change is probably a long way down the line. Someday I’ll even have the courage to say all this out loud, and that will be a big step forward.
And in fact, that’s what I am at last doing now. When John’s illness began and I realized we had to concentrate more on his physical and emotional state of being, our relationship began to change rather dramatically, into a softer, more mutually supportive engagement. I went with him to every doctor’s appointment, helping to clarify, for both of us, what we were hearing and how his illness might evolve. We shared with each doctor how Parkinson’s disease was affecting his walk, his movement, his alertness, his appetite. We understood—together—that there were few options, and that the way forward would not be easy. But we were together, perhaps in sickness even more than in health.
Sickness
Throughout our long marriage, when one of us was sick, the other fell into the role of good nurse. John’s comfort with that role went back to his childhood when he and his mother were living alone in New York City and she came home from the hospital after a hysterectomy. At this time his dad was back in Europe carrying out aid operations for the government. John completely took over running the household. It was during World War II, so there were rationing stamps to be dealt with, food preparation, dishwashing, and the cleaning of their tiny apartment. John learned how to care for his mother and, subsequently, me.
Whenever I was ill with a bad cold or flu, or after two surgeries, he was a wonderful nurse to me. In fact, early on in our marriage, when I was in the first months of pregnancy with David and forced to bed rest, John left his job at the Department of State every day to come home to prepare lunch for me so I wouldn’t have to use the stairs. Later on in our marriage, after he had the first of two major back surgeries, we had dinner in our bedroom every night after I returned from work, meals I came home to prepare and take to him. Those moments are very special in my memory. Of course we both knew that he would get better eventually, that each day as he grew stronger the long siege was coming closer to its end. And that made all the difference. It was a very different outlook from the one that faced us with John’s Parkinson’s disease, which slowly but surely robbed him of everything that made him feel useful in this world.
So now I wonder: Who will take care of me when I get sick? Who will cook for me? Who will sit by my bedside? I try not to dwell on these thoughts, instead relying on my awareness of my good health and strength. Yet the feelings creep in. What if I were to fall again as I did five years ago, when I broke my pelvis? What if I were, again, in the hospital for three weeks? How would I manage? The what-ifs are endless.
Those what-ifs include fear of a stroke, or of Alzheimer’s. So many people I know have suffered from some form of dementia and lost the ability to care for themselves. Those are my greatest fears. I pray that I go suddenly, quickly, and of course without pain. But how many of us are lucky enough to experience that kind of death?
I want to be prepared. I want to know I can be in control of my own life and, indeed, my own death. Of course all is in the hands of God—I believe that—but I can’t help wishing I won’t be burdening my family with a long, debilitating decline.
The other night I invited a few women friends over to watch the 2015 Super Bowl. Each of us had prepared food to enjoy while watching the game. But before it began, I told them I could offer them another option: I had a screener of the movie Still Alice, based on the novel by Lisa Genova. Without hesitation they all said they’d rather see the movie.
I don’t think I’m alone in worrying about whether I’ll find myself experiencing the same plight as the heroine of that novel and movie. She is a brilliant Harvard psychologist who begins forgetting—small things, at first: words, phrases, directions—until ultimately she finds herself lost in neighborhoods that she’s known for decades. It’s all downhill from there
. I’m certain that each one of us watching that film was saying to herself, Please, God, not me.
My children, as I’ve said, have their own lives. My beloved closest friend, Jane Dixon, is gone. I have many good and even “close” friends, but naturally they all have their own lives and their own frailties.
The Team of Rehm is no longer. I was once half of a complete team, and although the other half of the team was frail over the past few years, my half was strong. Now I’m on my own. How will I make preparations for serious illness? Legally, financially, I think I’ve done all I can. But emotionally? It’s a fear I have, and one about which I’ve begun to think seriously. Like John, I don’t wish to suffer endlessly without hope of return to a normal life. Preparation is the only answer.
E-Mailing Scoop
My Dearest Love,
I’m so tired tonight. It’s been more than nine months now since you’ve been gone. If you were here and I’d come home feeling and looking as I do right now, you’d be urging me to slow down and take better care of myself, to eat more (you don’t like it that I’ve lost twenty pounds), to get to bed early. You’d tell me to get into bed, and then you’d bring me a glass of champagne.
The world is such an awful place right now. In some ways I’m glad you’re not here to witness the horror of what people are inflicting on themselves and on others. I’m so afraid that America may be drawn into yet another terrible foreign war, with the loss of many lives, and even the threat to civilians in this country.
You’re not here, smiling as I leave the apartment, helping me to get through each day when I have to go on the air, to deal with questions, to be strong, to be fair, and to try to transfer the belief you’ve always had in me to this wide audience that has come to rely on me. Yes, I’m feeling sorry for myself, and I really have no right to. I grieve, my darling husband, I grieve.
Losing you is so hard. I’m alone, as I never expected to be. Your mother lived until she was ninety-two years old, so I assumed that you had longevity on your side. But she had a very bad hip and lots of pain, having refused surgery. We both knew that someday she would take her own life, and she did. Your father died at seventy-two, suffering from diabetic retinopathy. His life became impossible for him, living alone at his farm, so he, too, took his own life.
And now you. You decided it was time for you to die. I will always wonder whether you did it, really, because you didn’t want to live any longer, or whether you decided you wanted to spare your family the difficult long-term consequences of your staying alive, watching you lose more and more of your ability to speak, to care for yourself, to think and reason. Was it for you, or was it for us? I should have asked you that.
Instead, I accepted your decisions because they were your stated wishes. I didn’t feel I could interfere. Should I have? Should I have begged you to stay alive? Should I have said to you, “It doesn’t matter, just keep going! Whatever your condition, we’ll be here for you.”
But I didn’t try to change your mind. And I will forever question my decision.
I know I have no right to feel self-pity. I am healthy, I have work to keep me busy, I live comfortably. But the loss of you has been so hard. I want to bring back the memories of times when you and I were here together, working on Christmas cards or finances or e-mailing your book editor, or just talking. You taught me so much about patience and tolerance and perseverance. You educated me about so many things—literature, art, the world I didn’t know until you. I want to hold on to every one of those memories.
I love you, my darling Scoop. I hope you can hear/see/know that.
Heaven
One day as John and I sat together in his room at Brighton Gardens, it began to rain. We both love rain. In fact, when I was a child, my mother and I used to sit together on the sofa in our small den with our faces turned toward the window, watching the raindrops fall. It’s one of my special memories of being with her. John said, “I wonder whether there’ll be raindrops in heaven. I’d miss the rain.” And before I could say anything in response, he said, “Perhaps they’ll be bigger raindrops.” We both smiled.
I’d like to think there is a heaven. When I asked Roger Mudd whether he believed in heaven, his answer was yes. “What does heaven mean to you?” I asked. “An absence of pain and suffering,” he responded. That answer appeals to me, but I want to believe there is more. I want somehow to visualize something, however nebulous. I want to believe in the reports of those who say they’ve experienced some form of heaven, whether it’s “the light” or a “presence” beckoning them. But I think my own idea of heaven goes beyond that. I want to believe that my husband has been reunited with his parents, has met my parents, and is with Jane, his godmother, who adored him. I still hear her laughing, amused at some outrageous statement or action of mine. She would be so welcoming to John, greeting him with open arms, and he would feel totally comfortable and happy in her presence. E. J. Mudd, always so kind and solicitous of John, is there to shine a sweet smile his way, understanding his decision to end his life, ready to help him begin a new “life,” in the arms of God.
My dear friend Mary Beth Busby wrote an e-mail to me one day when I was feeling particularly down. She said, “I have no clue as to whether or not there is a heaven, but I believe in it because it makes me happy to imagine a continued relationship now—and a reunion later on—with those I have loved. And your Scoopy is right up there.”
My own belief, I realize, is rather childlike: they—all of my beloved relatives and friends now gone from me—are with John, and he is refreshed, he is new, he sparkles in their presence. He is without illness, as they are, and somehow each of them is engaged with all the others. Heaven, in my mind, has no bodily presence, only spiritual. And it is through the spirit that my loved ones are connected with each other. Do they see us? Do they know what is happening here in what many refer to as the “real” world?
I have always felt such strong connections to my parents, now gone more than half a century, that I can’t help feeling (again, that word feel) the same about my husband. He is with me still, he’s by my side, encouraging me to face my fears, reminding me of how strong I am, watching over me, letting me know each day, in the music I hear, in the flowers I tend on the balcony, in the raindrops I feel on my face, that he is with me. Is that what heaven means? That’s what heaven means to me.
Recently I watched the movie Heaven Is for Real, the story of a four-year-old boy, the son of a Nebraska Wesleyan Church pastor, who, while undergoing emergency surgery, slips from consciousness and enters heaven. When he awakes, he shares his experiences, to the amazement of his parents and others, who believe he’s making up stories. Slowly, the child’s father realizes the boy is telling the truth of what he’s seen, including being seated in the lap of Jesus.
This film reflects my own childhood and adult wish, hope, or even belief: that once I die, I shall see again all those I love and have lost, and that I shall encounter the Christ. I realize I’m fantasizing, but it’s remarkable that there are so many stories of those who’ve had near-death experiences and who recount similar experiences of seeing people they love and having a sense of peace and utter contentment.
I like to imagine that John is with me. I talk with him a great deal most days, especially when I experience something beautiful or encounter frustration or difficulty. There are times I hear his voice, laughing or saying, “Oh, sweetheart, don’t let that get you down.” And I’m comforted by that sense of his presence.
I’ve talked with others who have no belief in heaven but who nevertheless have experienced that “voice” of a lost loved one. NPR’s legendary Susan Stamberg is one. She lost her beloved husband, Lou, to pancreatic cancer. He began complaining of stomach problems early in 2007, but after an initial exam he was told there were no indications of anything serious. Then in California the stomach discomfort recurred, and yet another medical check, but with the same diagnosis. When Susan and Lou returned home, the discomfort persisted. Finally,
with examinations using what Susan called “the Big Machines,” they were told Lou was suffering from pancreatic cancer, which, because the pancreas hides behind the stomach, is very hard to diagnose.
Lou underwent surgery in April 2007, but it was found that the cancer had already metastasized, and that there was no effective chemotherapy. Nevertheless, he went through one round of chemo, then said he wanted no more. A very tough decision, but Susan said she knew it was the right one. The doctor advised her to take her husband home, since there was nothing more to be done.
Susan spoke of how difficult it was to watch the person she loved dying in front of her. At home, after about a week, he begged her to help him die, saying he had no desire to live through another hopeless day. But how could she help him? The two had spoken in earlier times about dying, each promising not to allow the other one to suffer and to help the other when the time came.
At this point, Susan said, she was frantic and irrational. Desperate to end his suffering. What could she do? “Here he was, begging me, and I felt helpless.” Later, after Lou died, Susan realized that, because it was she who administered his morphine each day, she could have given him a larger dose than prescribed. She remembers clearly each dose she gave him and how careful she was to document it for the hospice nurse and doctor. Now she sees she could have given him extra morphine. She’s still tormented by the question: Should she have done it? But she realizes that either she would have to live with the pain of not helping him or with the agony of watching him slowly die.
One night, at 3:00 a.m., Susan got out of bed to give Lou his last dose of morphine and then went back to sleep. When she awoke the next morning, Lou had died in his sleep. She had heard no sound, no crying out. Like me, she was not by her husband’s side to hold his hand as he passed. But at least she is comforted by the thought that he died at home, in his own bed.
