August 16, 2017
Ask the Chaplain: Carol Schneider PlainViews Staff
Toward Quality Spiritual Care in Long-Term Care Bruce Kalish
Diagnosis: Meaning Fatigue (July 17, 2013)
(Editor’s Note: This article was originally published July 17, 2013).
If I were admitted to the hospital today, and if you were my chaplain, it’s likely that you would find me “difficult to engage.” Had you stopped by to visit, I would chat politely with you. I would make small talk with you about bike riding, the weather, or the interesting necklace you’re wearing. But when you try (and you will, because the nurses will have called you to address my apparent denial) to engage me, I simply will not go there. “How are you, really?” you will ask, filled with compassion for this 31 year-old who is facing her third bout with cancer. “I’m hanging in there,” I’ll reply, with a tired smile. “I’m fine.” Perhaps you’ll try again; perhaps you’ll leave at that point. Perhaps you’ll decide to try again tomorrow. Chances are good that you’ll feel I’m just “not ready” to have that conversation. Leaving my room, you’ll inform my nurse that you didn’t have much luck, and then you’ll move on. You’ll make your own meaning out of the encounter: at least I know you’re available if I do want to talk.
You might be inclined to agree with my nurses’ suspicions that I am in denial, yet I assure you, I am anything but. If I may self-diagnose, I would like to propose a pastoral diagnosis that would apply to myself and countless other patients facing serious illness: meaning fatigue.
Let’s review the events leading up to the pastoral encounter described above. I was diagnosed, as many patients are, almost by happenstance. As a freshman in college, I had a cough that wouldn’t quit. Hoping for a good night’s sleep, I went to the local ER between classes expecting to be given cough syrup with codeine in it. A few hours later, an oncologist was pointing out the large tumor that had been revealed by my routine chest x-ray. The next time the cancer appeared, I was completely asymptomatic. Then, this time, ten years later, back pain and slight anemia prompted a doctor to look a little deeper and discover that it had returned for a third time. Listen to patients’ diagnosis stories, and you will hear this theme again and again – who ever would have imagined that a cough was actually cancer?!
So we begin this journey with an otherwise insignificant physical symptom being discovered actually to be a sign of a very serious condition. And then, from the moment of diagnosis, you are under a microscope. Your body is scanned and tested from all angles, in hopes of identifying any renegade malignant cells. Every physical sensation must be evaluated for its significance: waking in a sweat, you wonder did I just have too many blankets on me for this summer night, or am I having a night sweat?? Having been instructed by your physicians to be alert to possible side effects, and to call at the first sign of fever, rashes, chest pain, and a dozen other symptoms, you find yourself staring at a mosquito bite on your forearm, wondering whether it really is a mosquito bite, or whether it’s actually the beginning of an allergic reaction. A pound gained or lost could be the sign of tumor progression. A pain here or there could be indicative of a boost in your white blood cell count. Far from being paranoia, this hypervigilance is encouraged by the medical system as being an engaged patient. Yet for the patient, the experience of being constantly on the alert is exhausting. Nothing can be cast off as insignificant. Not even a mosquito bite.
In this context, patients and families face meaningful conversation followed by meaningful conversation. As the news of the diagnosis is broken to each friend and loved one in turn, the relationships shift. A new weight of meaning settles in. Meanwhile, priorities have shifted. Bucket lists have been made, and patients have resolved, perhaps, to focus on what’s important. We pour what little remaining emotional energy we have into the relationships most profoundly important in our lives, and pull back from things less meaningful.
In the month since I began chemo treatments for the third time, I have not cracked the cover of a novel. After two weeks of listlessly moving daily newspapers from the driveway directly to the recycling bin, I suspended my subscription. My average response time to friendly emails is about two weeks; I require myself to write one email per day. A month later, I’ve only just opened the cards I received from my coworkers. Meanwhile, I’ve begun playing Candy Crush, an utterly pointless game that involves grouping blobs by shape and color. Diagnosis: meaning fatigue.
So how shall you, the kind chaplain who visits me, make the distinction between meaning fatigue and denial? And what can you offer me? (Because, believe it or not, there are chaplaincy interventions from which I would benefit.)
Making the distinction is easy: ask me. One of the side effects of meaning fatigue is that we don’t waste our emotional energy on coded messages or beating around the bush. I’ll tell you in very clear terms about the ways that my diagnosis and its ramifications have changed my life. I’ll tell you, too, that I wish I was in denial, as it sounds like a very comfortable coping mechanism. And if you suggest, as chaplains so skillfully do, that “it can be exhausting, constantly having everything in your life carry so much significance,” I will likely endorse that experience. So, you can be fairly confident that I am, indeed, experiencing meaning fatigue. How, then, shall you intervene?
The absolute wrong thing for you to do now is to try desperately to have a meaningful conversation with me. Eventually, you will succeed. You will nudge me to express my feelings of fear and grief, and I will go there with you sooner or later. My defenses are weak, and my emotions are all very close to the surface. Yet all you will have accomplished is to further deplete my emotional stores. What you can do is offer normalcy. Companionship. Friendly conversation. You see, my friends now are all desperately worried. When we talk, they don’t tell me about the mundane matters of their lives; they know I have enough going on. And by the time I give them the update about my treatment and my latest scans, I’m too tired to chat with them about the silly thing my dog did yesterday. But you, chaplain, could offer me a moment’s respite. You could offer me a chance to laugh, to listen, to have a conversation that does not carry any apparent weight or existential meaning. And thanks to the beautifully ironic nature of our work, I will one day write you a thank you note, telling you how meaningful your visits were.
Holly Gaudette shared her courageous and vulnerable spirit with the readers of PlainViews® through several articles that she authored about her illness journey. Her articles not only allowed readers a glimpse into her life; they shared important lessons about providing care to those in need that professionals – chaplains and other disciplines alike – could integrate into their practice. Holly Gaudette served as a staff chaplain at NYU Langone Medical Center in New York City, a HealthCare Chaplaincy partner institution. She received her Master in Divinity degree from Duke University where she completed her CPE residency in EOL/Palliative Care at Duke. Holly served as a staff chaplain at NYU Langone Medical Center in NYC, a HealthCare Chaplaincy Network partner institution. She was board certified as a chaplain by the Association of Professional Chaplains (APC) and was certified in Thanatology through the Association for Death Education and Counseling (ADEC).