All Hands on Deck with Palliative Care

Every so often, I think that it's time to take a break from my blog. This happens when I feel like I'm reaching for topics and even though life seems to be full of them, I can't see the forest for the trees.

What I know is this: I've got a presentation for our Pediatric Palliative Care Consortium here at UC Davis Children's Hospital that's scaring the pants off me--nearly. Because instead of playing it safe and using Powerpoints to hide behind, my co-facilitator and I are going to ask people to break up into groups and interact with one another.

That's not such an unusual thing in the art therapy world, but when you switch to the academic and medical world, there is an increasing distance between the tangible and the virtual.  In a recent New York Times editorial by Richard Kearney, entitled: "Losing our Touch" he notes,

In medicine, "bedside manner" and hand on pulse has ceded to the anonymous technologies of imaging in diagnosis and treatment.

All around us, we are showered with information from ubiquitous social media (of which this blog is a part), wherein we remain at a discreet distance from whoever is providing information on the other end. Now in classes, we often face computers instead of professors. And as you gain professional status, you frequently find yourself in your own office, trying to engage a in webinar, which tends to lull you to sleep rather than enliven the finer points of a subject.

During our part of the day, I want the participants to experience as much as possible, the kind of immediacy that occurs when one is faced with a palliative care patient; the overwhelming feeling of questions that you have no idea how to answer such as : "Is this diagnosis dangerous?" and reaching deep down for some untapped source of strength.

Full humanity requires the ability to sense and to be sensed in turn: the power as Shakespeare said, to "feel what wretches feel":--or one might also add what artists, cooks, musicians and lovers feel. We need to find our way in a tactile world again. We need to return from head to foot, from brain to fingertip, from iCloud to Earth. --Richard Kearney

To this end, we've reserved a room that has tables facing each other rather than toward the front of the room. We'll divide up into groups and tackle a case that involves the anticipatory grief that patients face upon diagnosis. Then we'll take that case through the course of an illness to hospice and beyond, to bereavement.

I hope to model the kind of direct hand to hand care that we want practitioners to offer patients. To do that we want to identify inner strengths, the qualities that each of us possess which allow us to enter tough situations and to be of service, no matter how daunting the circumstances. We'll lay out a banquet of images and after explaining a simple SoulCollage technique, we'llask people this question:

What quality do you call on within yourself to support children and families in their grief?

We'll invite them pick images that speak to them, to their soul, about the qualities that give them the strength and compassion to approach and support families and children at the this crucial stage of life. Can you imagine what will happen if we share these qualities with each other?

Finding Renewal, or, "Self Care 101"

Self-care. The word sounds a bit stiff, as if someone who liked the meaning of the two words separately, put them together and ended up with less than when they began.

Many times, this essential, bottom line topic is trivialized and minimized so that we keep it at a distance. Frequently, at a healthcare conference, it is the last topic of the day. You are filled to the brim with useful information and ideas, you’re ready to call it a day, and with a scant half hour to go, the moderator gets up to speak on self-care.

The advice is boiled down, then offered up like overcooked vegetables: Remember to breathe. Eat well. Sleep. Rest-- and of course, exercise. All good advice, but how many of us are listening?

We need to be more resourceful in how we look at self-care. It is, in fact, a form of treatment. Vital word: as in therapy, remedy, cure, to care for. Rather than leaving it to chance and the final scraps of the day, I propose that we look at caring for ourselves as if we were a patient or client under our own care. We need to assess ourselves as carefully as we would that patient.

I like to remember quotations I learned in college. One that stands out is from Shakespeare’s Hamlet: “This above all… To thine own self be true.”

I understand Shakespeare's words to mean, in this context, that each of us finds unique ways of getting whatever we need to redeem ourselves. Those ways are going to be different for each person, just as the course of treatment for the same disease can be different for each patient enduring it.

As I thought about it, I realized there were at least two levels of need for self-care—immediate response to a potentially overwhelming crisis and those activities that we can pursue in abundance, say when on vacation.

One of my tried and true "emergency" treatments is to resuscitate myself with a cup of tea. Taking those few minutes allows my thoughts to settle and often, I regain the clarity and energy I need to meet the next wave of challenges.

If each person reading this blog wrote down all the things they do to care for themselves when they do have time, the list might be very long: making art, running, yoga, getting together with friends, reading, rock climbing, going to a movie, listening to music, swimming, dancing, hiking, hitting the beach, etc.

There may also be an intermediate level of self-care. We want to create ways to sustain ourselves while at, or after work, --an ongoing renewal-- when we don’t have the opportunity to travel to our favorite get away or sanctuary for a few days.

Recently, I presented a workshop on self-care to our Child Life Specialists Network of Sacramento, in which I shared many of these ideas with them.

Afterwards, I introduced and led them through a SoulCollage® workshop; a wonderful and pretty quick route to renewal. We looked right into the heart of the matter: “What sustains me? What nourishes me?”

The results were astonishing. Many participant's artwork revealed aspects of themselves not readily seen. Many uncovered feelings that may have lain hidden, unexplored or simply forgotten.

One of the most surprising results was my own collage. Initially I thought it must have come from my silly side, the side that remembers the theme music from Captain Kangaroo, or spontaneously makes up nonsensical songs. What I realized the next day though, was that in fact, the dancers in their rabbit costumes extolled the power of partnership as a means to self-care. For those introverts among us, we sometimes forget that a powerful form of renewal is to share the company of others.

In the Midst of Spring

I look out the door of my studio: the redbud is in bloom and small oak saplings are popping up everywhere after our recent rains. I welcome these drops from the heavens.

My challenge is to bring the energy of spring into the hospital.

After admiring the redbud, it's off to work where I'm met with a referral that seems to be at the opposite end of the spectrum from my earlier musings: Help a family with enough children to fill a school classroom to mourn the imminent passing of a beloved family member.

I have just half an hour to come up with an intervention and enough materials to carry it out. I try to remain calm inside and talk out ideas with the palliative care social worker. Each plan has it's drawbacks but finally, we come up with one that might work. She leaves to go back to the family. I assemble the art materials.

When I arrive at the waiting room, the television is on, a laptop game is in session, a baby is crying. Where do I find an entry point?

Go straight to the heart I tell myself. I ask the children to tell me their names, their ages. They're a bit defensive, trying to keep up the barrier--I'm a stranger on their turf.

I tell them why I'm there and that we're going to make something together, something that they can keep for the rest of their lives to remember their family member.

Just to make sure they have an understanding of what is happening in that room across the hall, I ask: "do you know why your relative is here?" Hands shoot up and slowly we zero in on the answers. Like water that swirls slowly around the drain and suddenly forms a vortex, their understanding takes hold.

Both the children and their parents tear up. We talk about the tears; like rain they clean us out.

I pass paper and ink pads and markers and stickers and ribbons--even a hole punch. All of the kids make a print of their hand and draw on the paper; flowers bloom on the page, purple stick people hold hands and hearts. Some of them write messages. Then one by one, they visit their relative to add that person's print to the paper.

Its a sacred and scary thing, this printing. The children hold back at first, but once I help them put their hand on top of the hand that reaches out, they relax into it. The atmosphere builds until the last children are hugging and kissing and giving messages and the grownups want to make their own hand prints.

I'm always surprised that it's the simplest of actions which mean the most at the end of life: one hand on top of another, words whispered into an ear or scribbled across the top of the page.

What I'm Learning in my Fifties

I recently read an article in the New York Times entitled, "What You Learn in Your Forties." A humorous article, it included such tidbits as "There are no grown-ups. We suspect this when we are younger, but can confirm it only once we are the ones writing books and attending parent-teacher conferences. Everyone is winging it, some just do it more confidently."

That got me thinking it might fun to consider what I've learned in my fifties, because, as my office mate reminded me this morning, we'll both be turning 59 this year.

The term "synaptic pruning" springs to mind. This term refers to the brain's regulatory processes, in charge of pruning the neural structures in the brain, and thus reducing the number of neurons and synapses in order to create more efficient synaptic connections. This tends to occur in younger folks...

I've experienced a similar kind of pruning in my 50's. As we grow, we make choices and those choices close off certain possibilities--while others open up. It is true that I will never climb Mt Kilimanjaro or become a lawyer, however, in the areas in which I've chosen to focus, the possibilities appear to be growing.

I've been pondering a new series I've just started: "the ecology of place”–or, “my ecological niche”: a series using plants gathered within my immediate surroundings, to create monoprints exploring the relationship between me (the human) and my environment (my yard).

As I thought about pruning choices, I realized that it was no surprise that I’d chosen this theme. I’ve had an ambivalent relationship to staying in one place for a long time; the result of moving frequently as a child. Although I truly love my small Central Valley town, there is always a part of me that wonders "I wonder what it's like in…"

This little thought keeps me from living fully in the present, in Davis, CA on Olympic Dr., in my house, and probably in any number of places I frequent. What better way to settle in, than to make a series out of it?

I look forward to sharing this work with you as it unfolds, both in my backyard and beyond.

Returns, Reunions

I've been stirring an idea around in my head.

Recently, I was offered a real, bonafide, 100% full time art therapy job at the hospital where I work. I would be doing essentially the same job I'm doing now but because of the extra time, I would be able to extend my services to the PICU and NICU, which so far, I serve infrequently.

Knowing that this offer would not likely occur again in my life time, I jumped.

I'd heard it was a possibility, but knowing that the coffers of the University of California aren't exactly flush, it just seemed like a wonderful dream. I also knew that if indeed it happened, it would herald a radical change to my art making practices.

At present, I've been able to spend several morning hours working in my studio, before I hit the road to work. I'm used  to considering, imagining, formulating and then sewing, making collage...creating. With the new job hours starting in September, my morning art routine will be reduced to an hour. I'll have weekends to work out too.

So back to this idea. Many years ago, when my children were young, I worked on several series which were an outgrowth of my meditation practice. I loved the idea that I'd gotten from Japanese American artist, Mayumi Oda, of beginning each day with a mandala.

One of the series was just that, a daily mandala. Another consisted of 5x7 inch wooden panels which depicted the phase of the moon as it intersected my menstrual cycle. Yet another became a series of alchemical flasks, each one holding the ingredients of life that were moving and transforming inside of me.

While I've been skeptical of the concept of self care in the therapeutic profession, as I look forward to a longer work day, I'm seeing it in a new light.

I want to return to the idea of practicing art as a form of meditation, using my hour as a time to make small repairs, adjustments to the soul, so to speak, that will keep me on my way. As the days grow subtly shorter, even here in the midst of summer, I'm looking forward to my own not-so-subtle changes, eager to see what the fall colors will bring.