PBS Show Religion & Ethics Newsweekly Spotlights Tobi Kahn and His Artwork, Including Commissions for HealthCare Chaplaincy’s National Center for Palliative Care Innovation
Photo: Father Smith and Tobi Kahn in the artist’s Long Island City studio discuss one of Tobi’s sculptures that he is creating for HCC’s National Center for Palliative Care Innovation.
“God moves through the artist,” says the Rev. Dr. Walter J. Smith, S.J., HealthCare Chaplaincy president and CEO. The paintings, sculpture, and installations that artist Tobi Kahn creates seek to bring one, as Tobi says, “to that sacred space. To the place that brings one comfort.” Watch the video here.
Cancer Patient and Chaplain Holly Gaudette
Editor’s note: Holly Gaudette, HealthCare Chaplaincy (HCC) staff chaplain at NYU Langone Medical Center, is on medical leave as she undergoes treatment for her third bout with Hodgkin’s lymphoma.
Inspires and Teaches Us
Holly, her mom, and her oncologist intend on August 3rd and 4th to cycle the entire 192 mile Pan Mass Challenge bike-a-thon cycling ride in Massachusetts from Sturbridge to Provincetown. This fundraising event supports cancer research and treatment at Boston’s Dana Farber Cancer Institute.
The remarkable Holly has recently written two exceptional articles from her perspective both as a Board Certified Chaplain and as a cancer patient for HCC’s online professional journal PlainViews®. We are pleased to reprint them here for our many HealthCare Chaplaincy Today subscribers.
If, after reading the articles, you have a comment that you would like to send to Holly, please reply to email@example.com and it will be forwarded.
Diagnosis: Meaning Fatigue
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, 10 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.)
||A “Sirius” Complaint
Holly Gaudette’s dog, Sirius, named for the brightest star in the night sky, was a bit put out by having Gaudette home all day on sick leave and thus, disrupting his sleep schedule. “He actually put himself back upstairs to bed the other morning,” Gaudette said of Sirius, who best she can tell is a redbone coonhound mix. “He came downstairs, looked around, apparently decided I was staying put, and then turned right back around. He was accustomed to a good 12-hour nap downstairs while I was at work. And he’s annoyed that I’m home keeping him awake all these days. Silly dog…”
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.
Be Mindful of the "August Fifths" in Patients' Lives
|Thumbs up from Holly after the odometer on her bicycle reached the 1,000 mile mark during her training for the 192-mile Pan-Mass Challenge fundraising bike-a-thon from Sturbridge, Mass. to Provincetown, Mass. to support cancer research and treatment at Boston’s Dana Farber Cancer Institute.
August 3-4, 2013, have been marked on my calendar since late 2012. Sometime last fall, discussions began about training to ride the Pan Mass Challenge (PMC), a 192-mile bike-a-thon across the state of Massachusetts. The more we thought about it, the better the idea seemed. 2013 would be the ten-year anniversary of my autologous stem cell transplant, and the tenth year I had been considered cancer free. So the date was set.
Early in 2013, we registered (my mom and I), and started training. Bosses were notified of the need for time off. Vacation accruals were calculated accordingly. Fundraising letters were sent. Dreams of triumphant finishes were hatched. August 3 and 4 quickly became the metric around which a year was organized. Events were either “after the PMC,” or would need to be fit into a training schedule. Quickly, my sometime bike rider self became a weekend warrior and eventually, a Cyclist.
That turned out to be a very good thing in a way that I never anticipated.
In April of 2013, just as training for the Pan Mass Challenge was really heating up, I was diagnosed with a recurrence of the same cancer that had supposedly been cured ten years ago.
As our life filled with doctors’ appointments, tests, surgeries, and chemo regimens, the PMC stayed at the top of our consciousness. “Can she still ride?” was the constant refrain. Doctors knew of my goal. One said, “I know you’re fine as long as you’re riding. If you stop riding, I’ll get worried.”
Cycling has become much, much more than a hobby since my re-diagnosis with cancer. And although it has provided much distraction, it is much more than even that.
Within the space of a few weeks, I went from a cyclist with a strained back to a cancer patient. I went out of work on disability. I started chemo. Yet as much as those facts pushed to define me, I pushed back: I’m not just a cancer patient. I’m not even primarily a cancer patient. I’m a cyclist. I’m training. I’m training to ride across Massachusetts (ironically, to raise money for cancer research). And I will do it as a cancer patient. Cyclist first, patient second.
Cycling gave me an identity I could hang on to when Cancer Patient threatened to overtake them all.
But I’ll tell you what strikes real terror into the heart of this Cyclist Who Also Happens to Be a Cancer Patient: August 5th. On August 5th, the ride will be over.
Sure, I can still go for a bike ride, but I won’t be training for anything specific. Somewhere around August 8th, in fact, my primary identity will become HG12-317, participant in a Phase I Clinical Trial. Rather than training rides, my schedule will be set by the trial protocol; blood draws, pet scans, and treatment doses will replace high intensity training.
As a palliative care chaplain, I have helped patients and families identify key events to which they can look forward, like the Pan Mass Challenge. I have advocated on behalf of those events, letting the treatment team know of their importance.
I have used those events to remind the treatment team that our patient is not just a patient, but is a grandmother, anxious for the birth of her sixth grandchild, or a father, proudly anticipating his son’s high school graduation.
I have folded those events into prayers of hope, and cried out in anguish when dreams were not realized.
But never once have I invited a patient to consider what the day after that big event will feel like, and in that, I think I have done a disservice to my patients.
How does one face the day after checking off the last thing on the bucket list, after all? When one date, one event, has been your motivation to endure physical suffering, how will you endure it once that event has come and gone?
Will you be able to seamlessly move your energy towards the next event on the horizon?
Is there a next event on the horizon?
Or are we to become, on August 5, just Patient #HG12-317?
For chaplains, especially those in palliative care, who daily encounter patients and families juggling complex illnesses, I would encourage you to be mindful of the August Fifths in their lives. You might plant the seed in their minds, inviting them to consider what that next chapter of their lives might look like.
Or you might make a point just to visit on that day after the big event, and wonder with them where you will go from there. You might state, emphatically, that although the big event has come and gone, their identity has not been reduced to merely that of Patient.
For myself, as anxious as I am to pedal across the finish line on August 4, I grieve for what I will lose in that moment. Perhaps I will hang on to my identity as a Cyclist. Perhaps my hope to ride the PMC again, cancer-free, in 2015, will be tangible enough. Perhaps my identity as family cook, canner-of-all-sorts-of-summer-produce, and knitter will suffice. Perhaps I will find that being HG12-317 isn’t so bad after all.
I suspect I will not know until well after August 5th.
Holly Gaudette received her Masters in Divinity degree from Duke University. She is certified in Thanatology through ADEC. She did her CPE residency in EOL/Palliative Care at Duke. Holly is currently on medical leave as a staff chaplain at NYU Langone Medical Center in NYC, a HealthCare Chaplaincy partner institution. She is certified as a chaplain by the Association of Professional Chaplains. You can follow her blog, Holly's Pan Mass Challenge: Training. Progress. Defiance. here
New CPE Fall and Spring Courses Offer Flexible Timing Plus Course Designed for Jewish Women
“Transformative” is how one alumnus describes her Clinical Pastoral Education (CPE) training at Health Care Chaplaincy. She says, “The quality of the instruction and supervision were outstanding.” Another student described it as “one of the best educational experiences I’ve ever had.”
If you or someone you know is thinking about gaining valuable experience in providing effective pastoral care for those who are ill and their loved ones or perhaps a career in chaplaincy, CPE at HealthCare Chaplaincy is the smart choice.
That is because HealthCare Chaplaincy is one of the largest and most experienced providers of clinical pastoral education.
Through hands-on practice, clinical supervision and academic study, chaplain interns, from a wide variety of faiths, learn how to listen and attend to patients more effectively.
Fall 2013 CPE units now open for enrollment:
- 38-week units, with a commitment of approximately 10 hours/week, at Beth Israel Medical Center and New York Hospital Queens (September to May)
- 38-week unit for Jewish women, at Beth Israel Medical Center (begins October 7th)
This course is a new initiative through the combined resources of the National Association of Jewish Chaplains and HealthCare Chaplaincy to better prepare Jewish women who are not on the ordination track for professional pastoral service.
- 18-week units at Memorial Sloan-Kettering Cancer Center, St. Luke’s-Roosevelt Hospital Center and NYU Langone Medical Center (September to January)
Spring 2014 units (February to May) now open for enrollment:
- 18-week units, with a commitment of approximately 20 hours/week, at Memorial Sloan-Kettering Cancer Center, St. Luke’s-Roosevelt Hospital Center and NYU Langone Medical Center.
Learn more here or contact Registrar the Rev. Amy Strano at firstname.lastname@example.org, or 212-644-1111 x219.
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