Acknowledging Spirituality in Life's Final Journey
By: David Seaburn
When I first met Andrea, she was a walking, talking spitfire of a woman, who could swear like a truck driver and weep like a baby. A vibrant 52, she laughed, patted my knee, and talked freely about her husband, with whom she fought continuously, and her daughter, whom she considered her mainstay.
Shed been referred to me by a friend after receiving a diagnosis of advanced ovarian cancer. Yet during our first session, she reviewed her medical history as if she were bragging about what shed bought on a recent shopping spree. It all started, she said in a sprightly tone of voice, with a hysterectomy, then a bladder repair, a cyst on her ovaries, and finally a diagnosis of ovarian cancer. Surgery gave way to chemotherapy, which gave way to radiation, which led to embarrassing hair loss, which she turned into a fashion opportunity: Hey, how do you like this scarf? she said, almost coquettishly.
As we started working together, it seemed unlikely that shed die, if only because she didnt have time for it. She kept working, kept moving, kept running as fast as she could, staying one step ahead of what was chasing her. She met daily with friends to shop, to lunch, to talk. She injected herself into the life of anyone who came near her, turning the black-and-white of daily existence into vivid color through her hold on living itself. She wanted to make everything better before she died; and she meant that quite literally, although shed laugh and say, I know, I know each time I said, Really?
Once in a while, though, it caught up to her: Im crying every day and I dont know why. How long do I really have? I just want to focus on feeling good and getting through this. Then, as we stood to say our good-byes and hug each other at the end of our twelfth session, she looked at me, her eyes filled with tears, and she asked, Dave, would you do my funeral?
Andreas husband, Tom, was desperate to support her, but could seldom see beyond his own worries and insecurities. When the pressure was too much, he disappeared into his work, only to be chided by Andrea for not being more available to her. He wept about her dying when she was talking exuberantly about living; and when she was depressed, he tried to stay with her, admitting that he didnt know what to do. Nevertheless, he loved her. He was affectionate and wanted to care for her, and went at it with workmanlike commitment, if limited emotional stamina.
Most of us live in a wonderful, protective dreamworld, in which others die as we project our lives into the future with careless confidence, rarely considering the reality of our own mortality. Nothing calls this insouciance into question more than a terminal illness, with its relentless progress toward death. As a psychotherapist whod worked in health care for almost 20 years, I, like my colleagues in the field, often worked with people confronting their imminent death. But there was a difference between the other clinicians and me: in addition to being a psychologist and family therapist, Im an ordained minister. Although at the time I saw Andrea and Tom, I hadnt served a church in more than 25 years, I carried with me a deep respect for the spiritual dimension of life and its role in the way people struggle to make existence meaningful. In fact, my theological roots in the Judeo-Christian tradition and organized religion had often made it easier to talk with patients who turned to church, synagogue, or scripture for solace. Many patients leave their religious beliefs and practices at the door when they see a therapist, assuming that it isnt something that a mental health professional would discuss. This is similar to patients who visit their physicians, but are hesitant to discuss emotional aspects of their lives because they believe the doctor is only interested in their bodies.
When patients find out about my background, or when I show interest in their religious traditions and spiritual practices, they breathe a sigh of relief because they can bring this part of their identity with them into the therapy office. I keep a Bible on my bookshelf, with all my other books and resources, and when patients hint at involvement in religious or spiritual practices, I always inquire further, assuming that it may be a vital part of how they make sense of their lives. When I encourage them to talk to their clergyperson or to read scripture or to pray if thats been a vital part of their lives, they appreciate my respect for whats important to them. Its a good reminder that mental health providers should always inquire about the spiritual or religious aspects of their patients lives to understand not only how they cope, but how they make meaning.
During the time I worked with Andrea and Tom, I accepted an invitation to pastor a small church for a brief period while the congregation dealt with some difficult transitions. For convenience, I began to see some of my private psychotherapy patients there, including Andrea and Tom. So, youre a minister, thats very nice, commented Andrea when she walked out of my little church office for the first time, as if Id just made Eagle Scout. Its mostly all bullshit to me, said Tom. Andrea screamed at him as we went our separate ways. Eventually, my being a minister would become a resource to all of us as Andreas fate began to dominate our discussions.
When I was a rookie therapist, one of my first supervisors told me that if anyone asked him what he did for a living, he responded, I sit with people. I laughed, but over time, came to see that this rejoinder captured something fundamental about what I do. I sit with people--much like mindfulness meditation or Buddhist sitting practice. I listen, I attend, Im curious and respectful, and in the end, Im enthralled by the intricate and often painful stories people tell. So I sat with Andrea and Tom when they argued about his self-centeredness or her nagging or their fear of the future or their anger at God for cutting her journey short. Somehow, my trying to remain still in the eye of the storm was helpful to them. They knew Id continue to sit with them through the awful waiting as the cancer spread and test results became more difficult to bear.
I want you to step up, for once! I want you to be there for me and stop focusing on yourself ! Andrea would yell at Tom.
I know. I just cant stand to see you like this, and when I do, I want to run.
Then get the hell out, shed say.
Id insist that they try to stay in it together---that this was the most important thing they could do for each other. This sucks, Tom would reply.
After an ominous scare, Andrea rebounded, and life went back to a semblance of normal. They canceled one appointment and then another. Four months later, when tests showed the cancer had spread to her colon, they called once more. I talked with her doctor, and the prognosis was grim.
When I saw them again, they were angry and afraid. Why is this happening? What should they do? Couldnt this just go away? I was pelted by their constant, desperate questions---questions I couldnt answer.
At times, I thought of my religious beliefs and the image of a journey through the wilderness, going out into the future, not knowing where it would lead, but having faith that thered be something at its end. At one point, not knowing what else to say, I told them, If I could reach into your lives and take this away, I would; but I cant. I can promise you, though, that Ill walk down the road with you wherever it leads.
Faith is a tricky term. It isnt the same as belief. Belief implies a degree of certainty thats supported by the doctrines, confessions, and injunctions forming the heart of a religious tradition. Beliefs are like the scaffolding of a religious life. Faith, by contrast, has the quality of free-falling into life, not because youre certain, but because youre willing to trust, even when theres little visible evidence to support that trust. Faith allows for and even encourages not knowing as a posture toward life; it welcomes what comes, trusting that what comes has meaning.
When the cancer took up the march again, I felt my role was to walk faithfully with Andrea and Tom, even if the road ahead was dark and the directional signs were few. So much of therapy is focused on change and solving problems that we can lose sight of the importance of just being with people, even when the problem cant be solved and change is well beyond our control.
At times during the therapy, Id met alone with Tom, so that he could have an opportunity to speak more freely about his own feelings. He never sat completely still during these conversations, and never stopped talking. Sometimes, it seemed as if he used his words, which often came at me rapid-fire, as a defense against my understanding him better. I knew that his father had died of cancer, but hed been reluctant to discuss it, saying he didnt remember the details because it occurred during his drug days.
Finally, in one of his less-guarded moments, I tiptoed toward the topic again. Tom, I know youve been through this before with your dad. He looked at me, as if deciding what to say. Then he told me that his fathers illness had been long and painful. He said that during that time, he avoided his father as much as he could, and that when his fathers death drew near and his mother needed him most, he abandoned them. When my father was sick with cancer, I ran away and started using drugs, he said brokenly. I just couldnt be there. I left my mother to deal with all of it. I never forgave myself. And so now, this.
He glanced at me, perhaps expecting me to judge him. There was a long silence. He looked at me again, this time smiling faintly, and explained that he felt he was being punished; that his wifes cancer was intended as a punishment of him for what hed done when his father was ill. When I asked who was punishing him, he answered, God.
Ive often noticed that the key to understanding how people cope with an illness--their own or that of a loved one--lies in the meaning they assign to it. For Tom, Andreas cancer wasnt only a disease that had taken over her body, but was also an indictment of him and how hed missed the opportunity to be a faithful son. Hed carried this memory all of his adult life, and now hed come round again to the same point: someone he loved was dying. Would he fail at the end once more?
It was pointless to challenge his view of God directly. His guilt about what hed done when his father was dying was so great that his view of God as condemning and unforgiving was an apt reflection of it. As long as he struggled with his shame and self-loathing, hed believe in a God who was punishing him. Ive found that this isnt uncommon. Many peoples perspectives about God embody, in part at least, the worst feelings they have about themselves or others.
I talked to Tom about forgiveness, but he didnt buy it. His only way forward would be to stay by his wifes side no matter what. The ministerial part of me realized that his capacity to care for Andrea through her dying despite his own pain would be his saving grace. So that became the focus of our therapeutic work together. We discussed what it would take for him to sit with Andrea and to walk with her and to be there when the time came.
Tom warmed to these conversations, especially when we could focus on concrete tasks--holding her, feeding her, washing her, cleaning the house--anything that helped him touch her and feel useful. This was heavy lifting for him. He struggled to stay at home and, at times, disappeared for hours during the day, but he always found his way back. Andrea appreciated how difficult it was for him to be there with her, and loved him for doing it.
When Andrea asked me to conduct her funeral, it seemed like the most natural of requests. Yes, I said, Id be honored. She then asked if I had another minute to talk, adding, I know theres a God. I asked how she knew. A week or so ago, we finally got everyone together for a family portrait, something Ive wanted to do for months. It was wonderful having everyone there. It was perfect. When I got up the next day, all my hair had fallen out. I was so happy it hadnt happened the day before.
Her proof of God wasnt that her cancer was disappearing miraculously, but that she could sit with her family one last time without having the cancer interfere. We hugged. Within a few days, Andreas daughter called to say she was on oxygen and was homebound. I said Id be glad to come to the house.
When I arrived there, Tom showed me around. It was a newly purchased and expansive ranch-style house. Theyd worked diligently and hurriedly to decorate it before Andrea became too ill to enjoy it. I sat in the living room, admiring the beamed ceilings, delicate floral arrangements, and carefully chosen antiques. Then Andrea came out from the bedroom, trailing 50 feet of oxygen tubing behind her, her face gaunt, a rash developing from the medications she was on, peach fuzz on her unadorned head, her clothes hanging limp. Tom became more and more restless as she approached, fetching her purse, then a bottle of water, then dusting the coffee table, then sitting with her, hugging her until she leaned away, the weight of him too much for her fragile frame. She breathed with difficulty and tried to say a few words each time she exhaled.
How are you doing? I asked her.
Im . . . ready . . . to . . . go. She closed her eyes and wobbled slightly, then opened her eyes again. This vibrant, brash, life-loving person was just waiting now, waiting for her life to end. Shed talked to her daughter, granddaughter, husband, and the constant flow of friends who came to visit, saying all she needed to say.
I asked her what she thought would happen when she died. She said she wasnt sure. She hoped there was a heaven, but then shrugged indifferently. In fact, she said, she was too tired to care.
Tom took an astronomy book from the coffee table and opened it, pointing to the picture.
Look at this, he said. This is Andromeda. It has over 200 billion suns! Not planets, but suns. It takes 20 billion years for the light from this galaxy to reach us. When it gets here, the source of the light may already be dead. Now, if theres a God out there supposedly in charge of all this, do you think hes going to stop and say, Gee, Tom and his wife are having hard time; maybe I should do something. I dont think so!
Tom was clearly angry and afraid. Could he take care of her in these final days? Could he handle the loneliness he was facing? Could he rewrite part of his own personal history?
The service? Andrea asked with a faint smile. She hadnt given it much thought. Her daughter arrived and we talked together about music and readings. Andrea seemed satisfied that others would take charge. With that, I reached for her hand.
Im so glad I had the chance to get to know you, Dave, she said.
Its been a privilege getting to know you as well.
I leaned over and kissed her forehead, and with that, I left.
Two days later, my phone rang. Andreas daughter told me that her mother had died the previous night. Tom came in to see me later that day.
She couldnt get comfortable and couldnt sleep. Finally she asked me to take her to the bathroom, he said. She couldnt even walk. I carried her, and then we sat on the floor together. I held her in my arms, and thats where she died.
I couldnt help but smile slightly.
Guess what, Tom? You did it. He smiled a little himself, with tears rolling down his cheeks.
The church was full. There was a framed picture of Andrea on an easel smiling broadly from the center of the altar. A bagpiper played Amazing Grace, its haunting tones reverberating through the rafters. Tom sat in the front pew, with Andreas daughter and granddaughter, and other family members behind them. Friends wiped tears from their eyes and talked in low tones to each other. I sat on the altar behind the pulpit, thinking. As a psychotherapist, I often attend funerals and memorial services for patients. Its a way to pay respect and reach personal closure. But this was different.
One of the things that makes ministry different from psychotherapy is that psychotherapists usually have to be invited into peoples suffering, while clergy are expected to go there of their own accord. Theyre expected to enter into someone elses suffering, and, when that suffering turns to death, bear witness to it for the whole community by holding up that life, as if for a brief moment its the only life, as if for a brief moment it reflects all life. As a psychotherapist, I needed to maintain Andreas confidentiality (at the funeral, only her family knew I was her therapist), while as her minister, I needed to speak to her essence, to that part of her that lasted.
On that day, as I stood at the pulpit and surveyed the faces before me, I was able to bridge these roles for Andrea. As I spoke, I no longer felt like her psychotherapist, but like her witness. Her life was no longer a clinical case, but a rich, nuanced story. And in the telling of that story, all the suns of Andromeda shone fleetingly on the place where a star once had been, and the source of all light came inexplicably near.
David Seaburn, Ph.D., director of the Family Support Center of the Spencerport (New York) School District, is the coauthor ofModels of Collaboration and author of the novel Darkness Is As Light. Contact: firstname.lastname@example.org. Letters to the Editor about this article may be e-mailed to email@example.com.