I am returning in this blog to Leslie and Harvey, the couple who was dealing with Harvey’s diagnosis of lung cancer. They had never spoken about their fears of Harvey dying, leading to his pulling away in order to protect her from the pain of his possible death.
Before continuing, however, I would like to clarify that just as in my book, Love and Loss, most of the patients in my blogs are composites of individuals I have worked with over the years, although I do try to remain true to the patient or idea I am presenting. Similarly, the dialogue, which I use extensively to bring the patient/therapist relationship to life, flows from my mind, not from verbatim transcripts.
I return now to the couple. Although Leslie is my patient, Harvey has asked to come in for another joint session, a request his wife Leslie is more than happy to accommodate.
“I appreciate you agreeing to see me, to see us again,” Harvey says, smiling a bit as he switches the “me” to “us.” “I guess you’d call that a Freudian slip, ‘cause I do think this session is more for me than for Leslie.” He looks pensive. “I’ve been thinking a lot about what you said last time I was here, how the awareness of death can provide an opportunity for greater closeness, for a chance to live life to the fullest.”
I nod.
“It’s never been like that for me. I mean not only since I’ve been diagnosed with lung cancer, but forever. I’ve always been terrified of loss, of death.”
“Really?” Leslie says, clearly surprised. “I never knew that.”
“I’m not sure I really knew it either until that last session. But then I realized it’s always been this way, even as a kid. I’d like go to the drug store to get some candy, there was this one guy behind the counter who was always nice to us kids, and I’d leave and wonder what would happen if I never saw him again and how terrible that would be. Or if one of my kids got sick, even like a cold or something, I’d wonder how I’d survive if they died, like I didn’t think I would survive. And then when I got sick, it’s like, wow! I’m going to lose everyone, everything, how horrible is that?”
The session is suffused with a heavy sadness.
“Harvey,” I begin tentatively, aware that he is not strictly my patient, “Hasn’t Leslie told me that your father died of cancer when you were quite young?”
“Yeah. I was seven. It was terrible. My mother was a wreck, depressed – not that I blame her – and us kids were pretty much left to fend for ourselves. I don’t know what we would have done without my grandmother, my father’s mother, although she wasn’t in such great shape either.”
“So your whole childhood became filled with sadness and loss and death.”
“Yeah, and my dog died right about then too.”
“I’m so sorry, Harvey. What a lot for a little boy to bear. You lost everyone who was dear to you, everyone who you needed to depend on, to rely on. And, not surprisingly, it’s still a sadness you carry with you.”
“But I guess that’s what I’ve been thinking about. Even though I’d constantly have these thoughts about loss or death almost whenever I met someone, even if they weren’t someone close to me, I’m not sure I felt the sadness.”
I look at him quizzically. “You certainly seem to be feeling the sadness now, right here in this room.”
“Yes, I definitely feel it now and I’ve been feeling it more, but I realize that I’ve protected myself from those feelings my whole life. I mean even though I really, really love Leslie and my kids and even though I think I’ve been a loving husband and father…”
“You have been!” Leslie interjects.
“But not completely,” Harvey continues, sadly shaking his head. “I think I’ve always kept a piece of myself back. And I don’t want to stay at this place. I don’t want to get to the end of my life and feel that I’ve cheated myself and the people I’ve loved because I haven’t been able to totally let myself go, let myself love to the fullest and get the very most out of life.”
Leslie is crying. “I’m so sorry, Harvey. I’m so sorry I didn’t know.”
“I didn’t know myself, Leslie, so it’s hardly your fault.”
Tears fill my eyes, as I think of the good-fortune of my intensely loving relationship with my husband and, of course, the pain of his loss.
I’m not sure where Harvey will go from here, but he’s clearly taken a big step towards greater love and connection.
Thursday, July 18, was Nelson Mandela’s 95th birthday. The day before, I read an article by Ellen Goodman, the founder of The Conversation Project, a public engagement endeavor to encourage families to talk to their loved ones about end of life decisions before being forced to shoulder the burden of those decisions without any guidance.
In her article about Mandela, she comments on the contentiousness between various family members and the repeatedly conflicting stories about his improvement or continuing critical condition. She writes, “The only voice we do not hear in this cacophony is Nelson Mandela’s.… How tragic if this eloquent leader, who not only demanded justice but inspired reconciliation rather than revenge, has left his own family – and his countrymen – in emotional disarray, facing such hard decision without his words to guide them.”
Ms. Goodman’s article brought many thoughts to my mind, both personally and professionally. As many of you now know, my book, Love and Loss in Life and in Treatment, chronicles my relationship with my husband, George, from the beginning of our intensely close and loving relationship, through his illness and eventual death, to my life as a widow. Since George was twenty-one years my senior, I always believed he would die before me. And we certainly had many conversations over the years about no extraordinary measures, no being kept alive by machines, no sustaining of life without any quality of that life.
And yet, as George battled his ever worsening metastatic prostate cancer, coupled with heart disease, it became clear to me how determined he was to live, despite his pain, despite his severely restricted mobility, despite his shrinking world. He didn’t want to leave me, he said. I still lit up his world. Just seeing me walk into a room made him happy. And so he continued to fight.
Until he was ready to stop fighting. As I write in my book, the decision to put George into hospice was difficult, but not agonizing. Even this last time, George took care of me. He was back in the hospital and was preparing for a procedure to drain his bile ducts from what might have been yet another type of cancer. Our doctor came into the room and asked if his heart stopped during the procedure, did he want to be resuscitated. Much to my surprise, this man who had fought and fought to live said, “No, it’s enough already.” He had made up his mind. It was time. He did survive the procedure, but his body was shutting down. I made the decision to put him into hospice, he died 36 hours later. George died with as much determination as he had lived.
So mine is definitely “a good death” story. And over the years I have certainly known many patients, as well as family members, who have had “good death” stories. I totally agree that it is imperative to have conversations with family members so that their final wishes are clear. But, I have also known instances where “the conversation” alone has either not been sufficient or totally disregarded.
On one side of the continuum, people who say they want no extraordinary measures when they are relatively healthy, may decide to try every experimental drug available to prolong their life even for a few weeks. Or a parent who has opted for no extraordinary measures prior to developing Alzheimer’s, may have an adult child who perhaps because of guilt or an inability to let go, will order a tracheotomy to extend the parent’s life. Both patient and caretaker are in highly emotional states and their decisions cannot be assumed to be consistent or what might seem reasonable to an outside observer.
Coincidentally, The New York Times Magazine’s cover story this past weekend, featured the heart rendering story of a bioethicist who had spent her career defending the right of patients to choose to die and her vibrant, athletic husband who had previously said he wanted no extraordinary measures to prolong his life. Then he became a quadriplegic in a tragic bicycle accident almost five years ago, and the theoretical became personal, leaving both husband and wife to struggle anew with the question of living and dying.
On the other side of the continuum, there are people who have made clear that they want every possible treatment, machine, anything and everything done to keep them alive, with the idea that as long as there is life there is hope. These people may also change their minds, as any quality of life slips further and further away. There are also caretakers who may choose to ignore their parent or spouse’s wishes, often because they cannot bear to watch the patient continue to suffer, sometimes because the cost becomes prohibitive.
Again, I’m a total and complete believer is having “the conversation,” in fact, many conversations, but the complexity of human emotions, particularly during times of great stress, cannot be ignored.
An acquaintance asked me the other day how I knew if patients were telling me the truth. I gave her the response I usually do: It doesn’t really matter. I can only know the world through my patient’s eyes, so whatever he or she presents is what matters. Besides, I added, none of us ever know if we’re telling “the truth,” we’re only telling our version of what we assume the truth to be.
After I left, however, I began to think more about my answer. Did I really believe it didn’t matter if a patient deliberately lied to me? Since I believe in the crucial importance of the therapist/patient interaction, certainly a patient’s deliberate lie has meaning. It’s not that the patient is “bad” for lying or that the content of the lie is important in and of itself, but rather that the patient’s need to lie says something about what is happening in the relationship.
I thought of a patient I saw many years ago who had been raped. After I returned from a vacation, she told me that she had been raped again by the same man. A look of doubt must have passed across my face, because she angrily proclaimed, “You don’t believe me!”
Oops. I remember hesitating, feeling uncomfortable. “Well,” I said, “I certainly wouldn’t say it’s not possible, but I wonder about the timing. Is it true that you were raped again, or are you saying that you’re angry with me for leaving you and that you felt much more unsafe while I was gone?”
She burst into tears, told me I was correct, and then started yelling at me for abandoning her.
Despite our difficulties, that patient and I had a solid relationship and her lie made sense in the context of that relationship.
And that led me to think of Jessica, the adolescent I saw who just lied – all the time, for no apparent reason, regardless if her lie would be discovered.
Her parents, who seemed concerned and caring, had no idea what to with their daughter. My initial assumption was that Jessica lied like all adolescents lied. I’d been an adolescent. I remembered. Lies about where you were, who you were with, what time you got home.
Jessica did tell those “normal” lies, lies about going to school, about showing up for soccer practice, about spending the night at the home of one of her girlfriends. And she was good at it. She’d look you straight in the face and you’d believe her. Except now her parents checked on her. They called the school, the coach, the friend’s mother. She was always found out. She’d shrug and move on.
She also told stories. Some of them might even have been true. “On my way to school today I saw a man on a motorcycle hit a deer. He was hurt. I ran to the house near-by and they called an ambulance.”
Realizing that questioning everything Jessica said was getting us nowhere, I tried to understand the meaning behind the story.
“How did you feel being able to help that man, Jessica?”
“I don’t know. Good, I guess.”
“Was the man grateful to you?”
“I couldn’t wait around. I had to get to school.”
Or, “I was home alone and some guy knocked on the door asking directions. When I opened the door he looked kind of dirty. I got scared. I started to shut the door. He tried to push it open, but I managed to close it. I called the police. They came and talked to me. I gave them a description of the guy. They said they’d look for him.”
“That must have been scary,” I say, again deciding not to question the validity of the story.
“Yeah.”
“And how do you feel being home alone, Jessica?”
“I don’t know. No problem, I guess.”
“Will this incident make you more afraid?”
“Maybe. Maybe not. I just won’t open the door.”
Trying to talk with Jessica more generally about her stories also got us nowhere.
“Jessica, do you know why you make up stories? Does it make you feel smart, creative, like you can out smart other people?”
“I don’t know. I’m not so smart.”
“Is it that you don’t feel smart? That you feel bad about not feeling smart?”
“I don’t know. I guess I’m smart enough.”
This isn’t a story that has a miraculously happy ending. Jessica and I never formed a relationship. I was never able to help her. In fact, I wasn’t even able to understand her. Sometimes I wonder what became of her. Did she become a thief? A politician? Or is she just someone who always lies?
I’d seen Billy before, during his senior year of high school. His plan was to go to school in central Florida, about three hours from his home, a plan he carried through despite considerable anxiety. He wasn’t sure what he wanted to major in or what career he wanted to pursue, pretty typical feelings for many adolescents. Still, his anxiety seemed excessive, related to a fear of separation and much ambivalence about growing up.
Billy is now seeing me again after moving back home having graduated from college with a degree in English. Not surprisingly he has been unable to find a job.
“I haven’t really looked all that hard,” Billy says sheepishly, his sandy blonde hair hanging over his eyes. “I mean, I know it’s rough out there – the unemployment, especially for kids my age. I don’t have anything special to offer. I’m not sure I could stand the constant rejection.”
“How’s it feel being home?” I ask.
He shrugs. “OK, I guess. It’s like always.”
Billy is the second of six children, all spaced closely together. His parents have a marketing business they run from home. The house is usually pretty chaotic. Not much time put aside specifically for the family or for quality one-on-one time with each other.
“Are all your siblings home?” I ask, trying to gauge the degree of chaos.
“All except Christine. She’s working in Boston. And Melody will be going back to college, but other than that they’re.”
“What led you want to come back to see me?”
“I’m feeling kind of down. I’m like stuck, not doing anything. Mostly I stay in my room and busy myself on the computer. Just passing time.”
“You’re not seeing your friends?”
“Most of them aren’t here anymore. Or they’re working. I haven’t really called around much.”
“You do sound pretty depressed.”
“Yeah, I know. I was thinking I should go back and see the psychiatrist. I hate going back on that stuff, but I feel lousy.”
“Well, calling me and planning to call the psychiatrist is certainly taking action.”
“I guess. But that’s not going solve my problems for the rest of my life.”
“What do you think your problems are, Billy?”
“I don’t know. I don’t know what I want to do.”
“Is that the problem, or is the problem that you’re not sure – or at least a part of you isn’t sure - that you want to do anything.”
“What do you mean?”
“Well, I wonder if part of you feels comfortable living at home, having your parents take care of you.”
“That’s kind of true, but it also doesn’t make sense to me. It’s crazy at home. It’s like a zoo. And it’s like no one even knows I’m there!”
“I think you just said something very important, Billy. Maybe it’s that you want to stay home until someone does know you’re there. Maybe what you’re feeling is that you never got to be seen, to be appreciated and that until you get that – until you get what you never got – you’re going to stay home and wait.”
“But I’d wait forever!”
“That’s true, Billy, you would. You’d never get what you wanted and you certainly couldn’t get what you wanted in your past. There’s no way to turn back the clock.”
“Wow! This is heavy. Do you think that’s it? Do you think that’s why I’m stuck.”
“I think that’s one reason. We humans are pretty complex beings and it’s not like one reason explains everything. And not even knowing that one reason – assuming it’s correct – is going to automatically make you able to do things differently.”
“What will?”
“I think that involves really feeling what it was like for you as a little boy, surrounded by all these siblings, your parents harassed and busy with their own lives, never feeling cherished as a unique you. That means feeling your sadness and your anger, neither of which is exactly easy for you.”
“So you really think it’s about the past?”
“I think it’s about your past and your present and I think they both really impact your future.”
“It sounds hard. But I guess I’m not doing anything else. I might as well work on me.”
“That’s a very courageous response, Billy. I hope you can allow yourself to feel proud of yourself, because I certainly do.”
Billy turns red. Mumbling, “See you next time,” he makes a beeline for the door.
I’ve only seen Sergio for a few sessions. Originally from Columbia, he and his wife risked all they had to come to the United States, seeking a better life for themselves and especially for their unborn children. They have four children now and it’s because of them he came to see me.
“My wife says I push them too much. And that it got worse after Mother’s Day. You know, school’s about to get out. I tell them, I don’t want any presents, save your money. What I want is all As on your report cards. I work hard. I carry bedpans, wash people’s butts, put up with not nice people. I smile. I don’t complain. It’s a steady job. I’m lucky to have it. I’ve taken my kids to that nursing home. I show them what their father does all day. Is this what you want, I ask them? And my wife, she’s cleaning people’s houses. All we do is work.”
“Do you think you might be pressuring them a bit too much?” I ask gingerly.
“No!” he replies emphatically, “My wife and I struggle every day. Every day we work to give them a better life. So why shouldn’t they get all As? That’s their work.”
I like Sergio. I admire his grit, his determination. Yet conflicting and complex emotions course through me. The immigrant experience, I think warmly to myself, flashing on my beloved grandparents who only wanted “better” for their children and for me. I think of being five and sitting at their kitchen table and my grandmother telling me I was going to be the next Madame Curie. That’s the warm side, the good feelings. But then there was my father. He was contemptuous of his immigrant parents, wanting only to distance himself from them, avidly pushing education and success for both himself and me, his only child. The pressure often felt unbearable.
“And did all you children bring you straight As?” I ask.
“No!” he says angrily.
“And you were obviously angry. How did you show your anger?”
“I wouldn’t talk with them all Father’s Day.”
Ouch! I think to myself, feeling the press to protect his children, as I wish I too had been protected.
“Sergio, is it possible that not all of your children are capable of getting straight As in every class, every time?”
“Why shouldn’t they be?”
“Well, different children have different strengths. Some are good in math and not good in English or the other way around. And sometimes if you’re too strict with children, they rebel, they try to get back at you by not doing well, even if they’re not aware of it.”
“No!” he exclaims, shaking his head from side to side. “That will not happen!”
This isn’t working. In my eagerness to protect the children, I’ve lost sight of my patient.
“Sergio, how do you feel when say – what’s the name of your eldest?”
“Eduardo.”
“When Eduardo doesn’t get straight As?”
“Angry. He’s not working hard enough! Too much time on the computer.”
“I understand, but what does it mean for you that he’s not working hard enough. In addition to anger, what do you feel?”
Sergio sits thoughtfully. “I don’t know how to say it. It makes me feel bad. It makes me feel, I don’t know. I can’t find the words.”
“Do you think it makes you feel sad for you, for your life? You’ve made so many sacrifices. You continue to make so many sacrifices – a job you barely tolerate, long hours, no time with your wife – that it’s really, really important that your children make it all worthwhile.”
“Yes, that’s it,” he says smiling.
“I know this may be hard for you to believe, Sergio, but you can’t expect your children to make your life worthwhile. You can make your own life worthwhile. Wait! Wait!” I say, seeing that he’s about to interrupt me. “Of course you want your children to do well. But hopefully you want that for them, not for you. Hopefully you want them to do what will bring them good feelings about themselves and their lives, not necessarily what you want for them. What if Eduardo was really good working with his hands? What if he wanted to be a mechanic or a carpenter?”
“I don’t know,” he says hesitantly.
“I know,” I say. “That was a long speech.” Directed, I think to myself, to both you and to my father. “You can think about it and we’ll talk more next week.”
