11.23.04

Fixing? Helping? Or Serving?

By Dr. Stan Goldberg

“We’re going 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.

“There’s a 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.

“When you 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.”

While the 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.

“I’d like 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.

“There are so many of you,” she wrote on the small erasable slate outlined with yellow plastic flowers.

“I know,” I said. “We multiply like bunnies.”

Cindy was 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 together.

The Guest 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.

During the 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.

“Anna, why don’t you take a break? You can have a nice cup of tea downstairs. Cindy and I will be fine together.”

“Are you sure?” Anna said, looking anxiously towards Cindy.

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 write.

“Lonely when I’m gone,” she wrote.

“I know. 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.”

She just 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.

After she 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 changing Cindy.

“It’s ok, Cindy, don’t be embarrassed, look who it is,” Anna kept repeating.

She turned 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.

“Is that ok?” I asked.

She slowly 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.

I’ll help you carry on, for it won’t be long ’til I’m gonna need someone to lean on.

Gradually I 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.

Please swallow your pride, if you have things you need to borrow.

For no one can fill those needs that you won’t let show.

Just 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,

I’m 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.

“It’s a mitzvah [blessing] what you do,” my Jewish friend would say.

“We’re very proud of you,” my family repeatedly tells me.

“You’ve been a blessing to us,” families of the dying say through tears.

Most people 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.

“Wouldn’t you like a little mint?”

“No,” the man groans, “I’ll burst.”

“Ah, come on, just one little mint,” the voice pleads.

“Well o.k.,” the man responds. “Just one.”

A hand 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.

“I’m going 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.”

I didn’t 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.

Anna was 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.

Cindy 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!

The 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.

Thanks, again, for all the support and love you have given Cindy and Anna.

Blessings, Laurie

Serving 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.

For many 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.”

Without any 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.”

He was 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.

I recently 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.

Service 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.

Copyright © 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 living.]