Fixing? Helping? Or Serving?
By Dr. Stan Goldberg
to ask you to fall in love with people who’ll leave you within months or
even weeks. Then we’re going to ask you to do it again and again.”
It was the
first day of my volunteer training session at the Zen Hospice Project. The
sessions were run by its founder, Frank Ostaseski, who’s devoted his life
to serving the dying and training people similarly committed to their
care. It was an unnerving concept. How would it be possible to allow
myself to fall in love with someone, knowing with certainty they would be
leaving me within a very short period of time? As Frank continued talking,
I wondered if I would have permitted myself to fall in love with my wife
of 35 years if I knew she would die within weeks or months after our first
meeting. Most likely, I would have pulled back, in spite of the intense
feeling I had knowing her for only a few hours. I wouldn’t have allowed
myself to enter a relationship that would result in the loss I knew would
be coming. But here was someone asking me to do it, not once, but
repeatedly. Before I had a chance to come to terms with his first
statement, he uttered a second and more difficult one.
distinction between "fixing," "helping," and "serving."
In my mind,
I didn’t see any difference. I viewed all three as identical. As a
speech-language pathologist, I thought I had been doing these three things
simultaneously for the past 25 years.
fix, you assume something is broken. When you help, you see the person as
weak. But when you serve, you see the person as intrinsically whole. You
create a relationship in which both parties gain. The purpose of hospice
is to serve.”
distinctions were deceptively simple, they are fundamental to
understanding intentions. I realized for my entire professional career, I
was a “fixer” and “helper.” Someone who could look at a problem a child
had and either find a solution or minimize its effects. I now was being
asked to place a defining characteristic of my identify on a shelf and
assume a new role, a “server.” Instead of continuing explaining with
words, Frank pulled out a stack of 100 black and white photographs of
people who died in hospice over the past year.
you to intently look at each one before passing them to the person on your
right. Everyone here has already died, but imagine they’re still alive.
Just think about your reactions to what you’re seeing. Then we’ll talk.”
As we looked
at the beautiful photographs of people who were in the process of dying,
my first reaction was to do everything in my power to help them. At about
the 50th photograph, I realized there was nothing here to fix. In spite of
my knowledge and experience, their condition would only progress, ending
in death. Everyone would still die in spite of all my efforts, in spite of
anyone’s efforts. Nobody would have been able to fix or help. All that was
possible was to serve. I was beginning to have a theoretical understanding
of “service.” But I’ve come to believe that theory is the lowest level of
understanding. The next up involves the concept’s application. I saw that
often during our training. I was able to watch experienced volunteers
serving the dying. But the highest level of understanding is when you’re
engaged in what you thought you knew either through theory or observation.
I didn’t have to wait long for that to happen. It occurred during my first
week as a volunteer.
so many of you,” she wrote on the small erasable slate outlined with
yellow plastic flowers.
“I know,” I
said. “We multiply like bunnies.”
referring to the number of volunteers at the Guest House. She tried to
laugh, but only the right side of her face and lips moved in a slight
upward direction. The surgeon had removed her cancerous pharynx and
tongue, and created a stoma, which is an opening in the front of her
throat to breathe. Neither food nor water could be taken by mouth, since
it would enter her lungs and immediately suffocate her. To prevent it from
happening before the planned reconstructive surgery was performed, her
mouth was wired closed and food, water, and medicine were administered
through a tube directly into her stomach. Unfortunately, the tumor spread
rapidly and surrounded the carotid artery. Reconstruction wasn’t possible
and her prognosis was poor. For two years, Anna, her mother, was with her
constantly, taking care of every need. As her condition worsened, she
could no longer care for her 57-year-old daughter in their one bedroom
apartment. They came to the Guest House to spend their last weeks
House is a restored Victorian home in San Francisco with space for five
residents who are not expected to live for more than six months. The
actual stay rarely exceeds two, with many leaving us within weeks of
arriving. Located on a residential street, there is no indication anything
remarkable is going on inside. There are no signs, and to enter, you ring
a doorbell as you would with most homes. For each five-hour sift, two
volunteers and an attendant, either a Certified Nurse’s Aide or a Home
Health-Care Worker, are upstairs with the residents. Sometimes an
additional volunteer is downstairs cooking. Since most volunteers do one
weekly shift, there were about 40 who cover the house weekly between
8:00am and 10:00pm every day.
first two weeks, Cindy was still alert enough to communicate by using her
slate and gestures. There were many things she didn’t need to say. Often a
look was sufficient. A movement of her head towards Anna meant she would
like to talk with me without her mother present.
don’t you take a break? You can have a nice cup of tea downstairs. Cindy
and I will be fine together.”
sure?” Anna said, looking anxiously towards Cindy.
gestured towards her mother, as if shooing a child out of a room. She left
and Cindy just shook her head. By the third week, it was difficult to
I’m gone,” she wrote.
We’re all doing whatever we can to prepare her. I think the social worker
is trying to find a support group when you leave.”
shook her head and laid it back on her pillow while straightening her
blanket. Cindy was meticulous about her appearance, even as she approached
death. When I came the following week for my Thursday shift, I learned she
had refused to take any more nourishment or water. She said it made her
nauseous. In hospice, the wishes of the residents are paramount, whether
it involves something we think is trivial, like the placement of flowers
in their room, or something serious such as refusing food. For the
volunteers and staff, it was irrelevant why she chose not to receive
nutrients. Choices are respected.
was no longer eating and grew weaker, her need for modesty became a
problem. During the first two weeks of her stay at the house, when clothes
or bed linens needed to be changed, Cindy would allow only female
volunteers to be present. Initially, it wasn’t a problem, since if only
male volunteers were available, she was able to support herself in bed or
move with minimal help to a chair or commode. As her weight dropped to
less than 80 pounds and muscles atrophied, it became difficult for her to
move or remain in a position for the attendant alone to clean or change
her. Anna often wouldn’t have the strength to assist. As Cindy’s health
continued to deteriorate and our friendship increased, modesty was
replaced by practicality. There came a time when there were no female
volunteers on my shift and the attendant asked for my assistance in
Cindy, don’t be embarrassed, look who it is,” Anna kept repeating.
and smiled at me. She didn’t need any reassurance. We had become friends
and confidants over the past few weeks. Most of our conversations involved
gestures and nods. Neither of us was embarrassed the first time I helped
in cleaning her body. Afterwards, it was just another thing we did
together, no different than having a conversation or me sitting quietly at
her bedside holding her hand. Most of the time I would hold her while the
attendant cleaned. These were very intimate moments, where she was utterly
helpless. During the last week of her life, the bedsores on her back
became extremely painful. When changing her shirt, I supported her as she
sat on the edge of the bed. After everything was completed, she refused to
lie back down. Squeezing my hand firmly, she indicated with her head she
wanted to continue sitting.
I had been
standing at the edge of the bed gently holding up her back with my hand,
avoiding touching the sores near the base of her spine. I decided to sit
close so my entire arm could support her.
ok?” I asked.
nodded her head with her eyes closed. Although I thought it would be fine
even before I asked, I never assume anything with residents. Each is
unique in their needs. There is no such thing as uniformity in dying. What
pleases one resident angers or causes pain to another. I usually was right
when interpreting Cindy’s needs since I was spending most of my time at
the House with her and Anna. In addition to my regular shift, at least
once a week I would spend the night sitting next to her so Anna could
rest. As I held her, I noticed she began leaning on me. As I felt my right
side support her entire body, the words and music of Bill Withers song
“Lean on Me” formed in my mind.
- Sometimes in our lives, we all have pain, we all have sorrow.
- But if
we are wise, we know that there’s always tomorrow.
- Lean on
me, when you’re not strong and I’ll be your friend.
help you carry on, for it won’t be long ’til I’m gonna need someone to
went from supporting to cradling. I couldn’t tell when our positions
changed, but it was a difference noticed by both her mother and the
attendant. No one spoke. My left hand held hers. As the pain increased, so
did the strength of her grip.
swallow your pride, if you have things you need to borrow.
- For no
one can fill those needs that you won’t let show.
call on me brother when you need a hand.
- We all
need somebody to lean on.
As I cradled
her body with my right arm, her tension began to diminish. As it did, her
grip also changed. It became soft and almost caressing. Occasionally, she
would release her grip and lovingly move her fingers over mine. I felt
honored serving her and being allowed to share such a profound experience
near the end of her life.
- If there
is a load you have to bear that you can’t carry,
right up the road, I’ll share your load if you just call on me.
- Call me if you need a friend.
- Call me.
As I sat
with her, I didn’t see a person whose body was ravaged by cancer. I felt I
was in the presence of a complete individual who graciously was allowing
me to share a profound experience. She was letting go of everything and
relying on my presence to get her through intense physical pain and the
uncertainty of the journey she would soon begin. She stayed in my arms for
over 30 minutes, with me occasionally stroking her forehead and gently
rocking her. In some ways it reminded me of the times when my son and
daughter were infants and I would hold them while they slept. For them,
helplessness was the beginning of their lives. For Cindy, who was two
years younger than me, it signaled the end.
When I try
to explain that every day I leave the Guest House I feel I’ve received
more than I gave, most people think I’m being unduly modest.
mitzvah [blessing] what you do,” my Jewish friend would say.
proud of you,” my family repeatedly tells me.
a blessing to us,” families of the dying say through tears.
who don’t do it, view serving as a sacrifice. Something altruistic and
totally giving. Nothing can be further from the truth. Few understand that
serving someone as they approach death is incredibly rewarding. It’s like
having an endless supply of water being poured into a small bucket. There
is no way it can contain the cascade. When I leave a resident’s room, I
often remember one the classic Monty Python sketches where a man is
stuffing himself with whatever food is placed in front of him. As his
gluttony increases, so does the size of his body. It becomes enormous.
When he lies back in his chair, covered with food he couldn’t put into his
mouth, a voice is heard from off-stage.
you like a little mint?”
man groans, “I’ll burst.”
on, just one little mint,” the voice pleads.
the man responds. “Just one.”
places the mint in the man’s mouth. As he’s savoring it, he literally
explodes. I often feel that way when I’m serving a resident. I’m unable to
contain everything that’s given to me. But just like the gluttonous man, I
can’t resist additional mints. Those who I serve become my teachers,
providing me with lessons about living that are transforming. Every time I
leave a resident’s room I leave with a greater understanding of life and
my place within it. The same feeling occurs regardless if I was feeding,
talking, changing bed linens, cleaning their body, listening, or just
quietly sitting at the bedside.
When I sat
with Cindy the next week, she would occasionally open her eyes and make
hand movements towards the end of her bed. I had no idea what they meant.
Before I left I kissed her on the forehead, saying goodbye for what I knew
was the last time.
to miss you very much. You’ve meant a lot to me and everyone else in the
house. Thank you for what you’ve taught me. I love you and we’ll watch
over Anna. Have a good journey.”
know if she heard me. There was no visible sign she did. But I’ve been
told people, who are near death and appear to be unaware of their
surroundings, are able to hear and understand what is being said to them.
I was no longer concerned with Frank’s statement that he was going to ask
us to fall in love with people who would leave us within weeks or months.
After serving Cindy, I knew I would do it again and again. Two days after
I saw Cindy all of the volunteers received the following email.
Cindy died peacefully this morning, pronounced at 8:15 am.
at her side and Irma was also there at 7:30 when she took her last breath.
Tom, the volunteer with HBB who has been visiting daily, had been here
most of the evening and part of the night. Judy from HBB stopped in around
1am to check on Cindy and give support to Anna.
did not want to have the ceremonial bath done, so Hanna and Carrie bathed
and dressed her in the clothes that Anna had set out. We surrounded her
with candles and the flowers from her room. Cindy has a "Mona Lisa" smile
on her face!
mortuary will be here around 10:30 this morning, as Cindy’s wish was to be
picked up immediately. All are welcome to join us in honoring her leaving
at that time.
again, for all the support and love you have given Cindy and Anna.
gives purpose to life. Yes, it benefits others. But it’s unique among all
other human activities in what it does to those who practice it. In spite
of what you give, you receive significantly more. I helped Cindy in the
dying process, but in return, without asking, she taught me the importance
of letting go of what no longer works. Being involved in her death brought
me to that third level of understanding. Every resident I’ve served has
been my teacher. Lessons are never requested. They just occur. If I listen
carefully, I receive them. Metaphorically, they say, “Listen, this is
important.” Often, they have the subtly of a sledgehammer. Some I
immediately understand. Others, I’m still struggling with. But all move me
forward in my understanding of life.
people, these lessons are rare occurrences. For those involved in service,
they happen everyday. Serving a person results in a stripping away of
agendas and egos. Pema Chodron said that having an ego was like a very fat
person trying to get through a very narrow door. It’s possible, but
painful. Serving our residents is an egoless event, as I imagine it is in
all other forms of service. Things that are peripheral to being human
dissolve into their needs and fears. I remember a question I asked Frank.
“How do you
know what’s the right thing to say or do? With my clients, if I say
something wrong or even stupid, I know I can fix it next week. But with
the dying, there may not be a next week.”
hesitation he said, “You’ve been doing these things your entire life. Not
just as a therapist, but as a human being. If you’re present, you’ll know
the right thing to do, you’ll just know.”
right. The defensive layers of armor which for years insulated me from
both pain and compassion fell away. And the most amazing thing is I can’t
understand how I became a more authentic human being with so little
effort. Something happened to me as I served. I liken it to a caterpillar
metamorphosing into a butterfly. She doesn’t choose to change; it just
happens. Becoming a better human being isn’t difficult. In fact, I didn’t
even have to try. All I did was to serve. I think the transformation had
to do with how the residents treated me. Emptying a urinal or listening to
someone’s fear of dying brought an equal amount of gratitude. To be so
loved and appreciated by someone you’re serving changes the soul.
When I serve
I view everyone as intrinsically whole. As someone who is no different
than me. As someone who deserves every bit of compassion and happiness I
wish for myself. That’s the beauty of service. I am them and they are me.
The idea is embodied in the Tibetan concept of equanimity, where you look
into the soul of another human being, and see yourself. In hospice we hope
our service leads to a peaceful and dignified death for residents.
Sometimes it does; other times it doesn’t. But you always grow regardless
of the outcome. You grow through your intentions. Whether I place a box of
tissues closer to the weak hands of a resident, clean a commode, or guide
a friend along her final journey, my intention is always the same — to
serve people as if I was them.
visited my daughter in New York City. As we walked through Greenwich
Village on a cold winter day, we came upon a children’s pocket park on 6th
Avenue and Minetta Lane. Within the park was a small cinderblock building
that probably housed children’s playground items. As we passed by, I was
impressed by the wonderful scene painted by the children on the building’s
wall. I kept looking at it as we walked until I noticed a quote by a
well-known educator written in a child’s hand. It was the author of the
quote that caused me to stop. But it was the words that kept me there.
is the rent we pay for living. It is the very purpose of life and not
something you do in your spare time.
As I review
what I have gained by serving the dying, and how it has given purpose to
my life and changed me, I realize I’m not paying enough rent.
© Stan Goldberg.
Goldberg is a Professor of Communicative Disorders at San
Francisco State University with a Ph.D. in Speech Pathology, a M.A. in
Political Theory and a B.A. in Philosophy. For over 25 years he taught,
treated children, researched and published in the area of learning
problems and change. Used with permission from
The Power of Purpose Awards, Sponsored by the John Templeton
Foundation. [Ed. note: It was Marian Wright Edelman, founder and president
of the Children's Defense Fund, who said, “Service is the rent we pay for