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Archive for February, 2010

Her feet were perfect.  Long and slender, with toenails painted a sparkly shade of Grape Fanta, like any other teenaged girl’s would be.  I had no choice but to notice these lovely feet; I was massaging them gently as the patient lay in her hospital bed.

Grateful for their ordinariness, yet trapped by it, I struggled knowing that I could go no further.  Because if I attempted to massage any other part of her body, I would have to move closer to the hole in her face where her nose used to be.

Serena was under the care of Hospice due to an aggressive form of skin cancer.  It was attacking the parts of her body that had been most exposed to the sun.  Like most of us, her face had seen the most direct sunlight, and it was on her face that the cancer was its most virulent.

She was blind, and bandages covered the top of her head down to just below her eyes.  Right below the bandages her face looked like some rabid animal had been feasting on it.  In a sense, that’s exactly what had happened: the cancer was eating her alive.

When I entered her room, soft Spanish-language hymns were playing on a boom box.  Her mother was sitting on the cot by the window, stringing beads.  She had boxes and boxes of beads, and bags full of finished bracelets and necklaces. Serena was wearing one of the beaded bracelets around her right ankle, a gift of adornment any girl might receive from her mom.

“Hola Senora,” I said, as I reached into my limited repertoire of Spanish phrases.  I explained as best I could that I had come to offer her daughter a massage. She approached Serena’s bed and asked her if she would like a massage. “Si,” came the whispered assent, lisped from a mouth missing its upper palate.

I brought a chair to the foot of the bed and glanced up along her skeletal frame.  In addition to the facial disfigurement, she had large tumors dotting her skin at various sites on her body.  Although the nurse had told me I could massage Serena’s shoulders, I knew with one glance that I would not be able to.  I was afraid that if I moved closer to her face, I would freak out.

I’m aware that my admission of this aversion might seem unprofessional or insensitive.  It’s not meant to be.  It’s just that I had never before encountered such an utterly disfiguring disease.  I did not feel equipped, emotionally, to look it (literally) in the face.

Gingerly, I lifted the sheet from her feet.  When those sparkly purple toenails peeked up at me, my relief was palpable.  “You can do this,” I told myself.  “Just keep breathing, and focus on her feet.”

As I applied lotion to the only part of her body that was covered with appropriately young, unblemished skin, I looked up at her mother, who had clearly had been the one to paint Serena’s toenails. It was a way that she could honor her daughter’s beauty, to give her something that Serena couldn’t even see, but everyone who cared for her could. This one area, a demilitarized zone on the ravaged body of a teenaged girl, sparkled in the soft light.  I sat, mesmerized by the simple beauty of those young, elegant feet, and tried not to cry.

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Although this is a little bit off-topic, two of my Wise Hands colleagues, Lesley Majzlin and Ellen Roth, recently returned from a service project in Ethiopia. They spent a month instructing orphanage caregivers in massaging the infants and children under their care.

For more about this inspiring project, please click this link:

Massage Therapy Comes To Layla House

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Massage therapists are often nurturing, giving people. It should not come as a surprise that some of them might want to donate their time and skills by volunteering with hospice.

In the dozens of conversations I’ve had with prospective volunteers, I have noticed some common themes. Some people are a perfect fit for a hospice volunteer program; others are not. If you are a massage therapist and you are considering volunteering with hospice, it may help to ask yourself the following questions:

1) Do I have the time in my schedule to make a weekly volunteer commitment? Hospices dedicate significant resources towards training volunteers, and they will expect you to be reliable, available, and committed.

2) Have I processed my own grief regarding loved ones I have lost? Many volunteers come to hospice after having received hospice services for a family member. If the death is recent, or if you are still grieving, it is important to give yourself time to heal.

3) Am I willing to comply with the rules and regulations regarding immunizations? As in any medical setting, volunteers must have a physical exam and show that they are immune to a number of communicable diseases. If you are opposed to vaccines or uncomfortable receiving a TB test, a medical setting is not an appropriate place for you to work.

4) Are my beliefs about disease, and about healing, in line with hospice philosophy? One prospective volunteer told me that, as a “healer,” he had personally beaten cancer through spirituality and he wanted to bring hope to our patients to help them get better. Another said I was “allowing the possibility” that I would get sick when I was explaining that I get the flu vaccine every year so that if I catch the flu I will not pass it on to my patients. She believes that she is healthy because her attitude keeps her healthy, which is a logic that could lead to blaming sick people for causing their own illness. It is inappropriate to bring these kinds of belief systems into an environment where people are suffering from terminal illness and facing imminent death.

5) Do I have adequate emotional support in my life from family and friends? Working in hospice can be exhausting and depressing. It is important to be able to share your feelings with trusted loved ones and receive nurturing in return.

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As a massage therapist I tend to believe that my work matters. In a typical work day I get a lot of positive feedback. Over and over again my clients tell me how much better they feel after their treatments, how much they look forward to seeing me, how much of a difference I make in their lives. Not many jobs provide so much ego gratification. At the very least it’s nice to feel popular.

This is especially true working with seniors and in hospice. Towards the end of life, many patients express appreciation and gratitude for the massages I give them. Some of them tell me that it’s the one thing they look forward to in a day. Others say that it relieves their pain, or that it helps them get a few hours’ badly needed sleep.

Non-verbal patients often show signs of the relaxation response, providing essential feedback that tells me I am helping them: breathing slows and deepens, facial expressions soften, hands unclench. I walk away from those patients feeling the same kind of satisfaction I would have felt if they had said “That was wonderful.”

And then there are patients like Ms. B. Admitted to one of our hospice inpatient units after her husband had found her suddenly catatonic, our nurse asked me to see if I could help her. When I entered the room she was lying there, eyes wide open, face expressionless. Unless I know that a patient has some kind of cognitive impairment, I always speak to her as if she can understand me, so I told Ms. B. that I was there to give her a massage, and that I would start by putting some lotion on her hands. When I reached for her left hand, she extended it towards me. I took that as a positive sign and began her massage.

During the entire session she stared blankly at me: her eyes followed me as I moved around her bed, massaging first her left hand and arm, then her lower legs and feet, and ending on her right arm. I observed none of the usual signs that I look for to indicate a positive response: no change in breathing patterns, no eyelids fluttering. And because she could not speak, I was unable to ask her how the massage felt. I thanked her and exited the room feeling perplexed and somewhat unsettled.

Two weeks later I went back with M., one of my volunteer trainees. The nurse told us that Ms. B. was starting to emerge from catatonia, uttering a few words and phrases. When M. approached her and began to introduce herself, Ms. B. shouted “I’m hard of hearing!” M. leaned close to her and spoke loudly, directly into her ear, explaining that she was there to give her a massage. As she did the previous time, Ms. B. simply stared, eyes wide open, as M. began to work.

The session proceeded much the same as mine had two weeks before: Ms. B.’s eyes followed M. as she moved from body part to body part, but she showed no other engagement with, or response to, the massage. She was completely unreadable.

As M. was finishing up, and saying goodbye, Ms. B. exclaimed, “Nothing happened!” M. smiled and said “Nothing was supposed to happen.” Our patient was not, like so many others, full of gratitude and appreciation. She was simply puzzled.

Before Ms. B. was discharged, M. and I went to see her one more time, while her husband was visiting. We explained to him that we had been giving her massages, and he agreed that it was a good idea. It was clear that it gave him comfort to see us caring for his wife. Her affect, however, was unchanged from the previous week, and her response to the massage was, once again, neutral.

Situations like these challenge me as a practitioner, and as a teacher. What does it mean when a patient does not understand the treatment we are providing? How do we measure the benefit of our work when we receive no positive signals from a patient? Does the absence of negative signals suffice? And, finally, if the family receives comfort from the fact that we are massaging their loved one, is that reason enough to provide the treatment?

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