Rachel Simon's Blog

I worry that I’ll get lost, but she is at my side, guiding me, saying, “Around this corner, down this hall.” I put my trust in her, and we walk forward.

I am a hospice volunteer. Usually that means I visit terminally ill patients in their homes, which might be actual houses, though they might be Alzheimer’s facilities. When I see my patients, I ask what they would like me to do. Sometimes I sit quietly across the room while they sleep. Sometimes I engage them in conversation. Maybe we sit on their patio, window-shopping past their memories.

My role is to serve them. My goal is to love.

People ask why I do it. When they too volunteer in some capacity, I can skip the part of the answer that involves words like “giving”, “setting myself aside”, and “doing unto others”, and move directly to the chain of losses that nudged me toward this specific form of giving. But when the idea of volunteering is foreign to them, either because they have too many other commitments or find the very notion baffling (as one person said to me, “Why would I do anything for a stranger—for free?”), I get stuck in what is only a prefix to the real answer.

I suppose if I had to boil it down, I’d answer this: “Because everyone deserves to die with a caring person beside them.”

“Now,” my own guide says, pausing at the elevator, “up to the sixth floor.”

The hospice movement began in the 1960s, when a British medical social worker, Dame Cicely Saunders, started giving lectures about how she was inspired by a dying patient to think about options besides medical settings where patients could go to die. Then Dr. Elisabeth Kubler-Ross published her famous “On Death And Dying,” which brought the process of dying out of the shadows. Soon a philosophy formed that said dying patients have the right to palliative, emotional, and spiritual care, and to focus on quality of life over cure.

Most people think of hospice as being in its own building, and in some cases that’s still true, though a substantial portion of patients are served in their homes. The agency for whom I volunteer, Compassionate Care Hospice, in northern Delaware, didn’t even have a separate building for many years. But recently, St. Francis, a local hospital here in Wilmington, DE, found itself with an unoccupied floor, and an arrangement was made. And so today, led by Anne, the staff person who trained me in giving, I am visiting this in-patient unit for the first time.

The elevator doors open.

To my surprise, Anne and I step out into a space with carpets and plants, upholstered furniture and sunlight. The effect is more homey hotel than austere hospital, a place not of cure but of kindness. My confusion about our way here begins to recede, a process hastened by my meeting the receptionist, with her gentle smile.

The nurses, too, sense my disorientation. They say hello, and their looks are rich with acceptance. I can be lost, I think, as I shake their hands and learn their names, but they’ll be here with me, letting me feel whatever might feel, being understanding if I should need a helping hand.

Anne takes me through my tour.

The facility has fourteen beds, each in its own room, each decorated with patchwork quilts, living room-style chairs that open into beds for family sleepovers, old-fashioned blinds, earth tones. There is a family room where relatives can watch television, sit quietly, or talk to each other, while their parent, spouse, sibling, or child sleeps. One side of the family room has been specially set up for children, with a small table, chairs, and coloring books.

The families also have access to a full kitchen – complete with cookies and other treats brought in by the staff.

There is even what Anne calls a quiet room, which looks like a nondenominational chapel (hospice is for people of any faith, including no faith at all). “Families can come in here,” she says, “when they need to be alone, or to pray, or to cry.”

But I do not see tears today.

There is only one patient in the unit, and I see him only fleetingly, when his door happens to be open and we walk by. A gray-haired woman is with him—his wife, maybe—and she smiles at us, and waves.

And as we continue on, and I walk past the empty rooms which, someday soon, will be occupied by the kind of people who led me, as Anne is leading me now, to hospice, I remember so much more than tears.

There, flashing quickly before me in an empty room, is Angelo, the father of my best friend from fifth grade. A bank teller, jazz drummer, and man of wit and folk wisdom, he had opinions on just about everything—and an open mind if challenged. I think of him before the cancer, at his kitchen table, he in his late sixties, I in my thirties. He is holding up a carton of milk, pontificating about the appalling way most people open the spouts by pushing their fingers inside the folds of the lid. Then I remember his daughter, still my good friend, on the day of the funeral. She is saying to me, “Those people in hospice were amazing.” That is the first time I hear about hospice, and immediately I want to know more.

There, in the next room, I see my best memory of Kenny. A friend who was the bookkeeper at my food cooperative, he told me, soon after we first met, that he could eat whatever he wanted, because he was HIV-positive, and someday he’d be getting too thin. I was in my mid-twenties, he in his mid-thirties, and the closer I got to him, the more I worried. When I learned, a few years later, that he’d come down with pneumonia, I worried harder. When I learned, a few months later, that he’d caught it again, I knew. He left the food cooperative and settled into bed at home. I said, “I’ll come to see you every week,” and for the better part of the next two years, as his partner John tended to him, I did. I hadn’t yet heard about hospice, but, as I later learned, I was practicing it. When I came, John was able to take a break, and Kenny was able to have company. I sat on his bed, listening to his stories about his life, his sadness over the life he wouldn’t have, his happiness about all the love he’d come to know. We never cried. We laughed, especially when he sang along to his favorite Bette Midler video. He had a big booming laugh, and that is what I envision now: his head back, his mouth open, our hearts open wide to the world.

I see others in my memory as we proceed down the halls. The ones killed by accidents, brain hemorrhages, undiagnosed heart conditions, who went too fast to know they were going. What their families would have given for the pause before it was over, for the opportunity to hug, or listen, or assure them someone was there. For what each of their losses taught me was the luxury of hospice.

And then I imagine the patient I have been visiting for the last several months. We also do not cry. With her Alzheimer’s, I’m not even sure she knows she’s going. Sometimes she’s distressed because she’s convinced her mother—dead for decades—is expecting her, but she can’t find the door out. Sometimes she thinks the floor is a cliff and she’s going to fall off. I touch her hands and speak to her. I ask her to tell me about her mother. I suggest we look up from the floor to watch a video of Lawrence Welk. And on warm days, I offer to wheel her outside. She loves the sun, and we sit on the patio, getting warm. I ask her if she wants to sing, and she always does. That is what I see now: us sitting on the patio, singing “America The Beautiful” or “When You Wish Upon A Star.” Singing is good for the memory, I’m told. But as I know from Kenny, it’s just as good for the soul.

“Why do you do it?” people ask.

I think about this question again, as Anne and I say goodbye to the nurses.

She leads me back down the labyrinth of hospital corridors, away from this place of loss and love, where I will spend so much time in the months to come, and where many lives will change, including, in ways I cannot predict but know I will cherish, my own. And as we reach the ground floor, and step out into the light of everyday life, I realize I have a better answer than any of the ones I’ve been giving.

I do it because everyone deserves to be heard.

I do it because everyone deserves to pontificate about milk, or sing along to Bette, or sit in the sun on the patio.

And I do it because everyone deserves to reach out for another hand. Even though nobody knows exactly what lies ahead, with hands intertwined we will walk there together, side by side, for as long and as far as we can.

When my three siblings and I were kids, living with our mother, there were only a few activities we did outside the house as a family. We saw movies (usually at drive-ins), got ice-cream (usually at a local family restaurant), and went bowling.

We were champion commentators throughout a movie. Hence, the merits of drive-ins. (Being able to take the dog was a plus, too.)

We were champion devourers of ice-cream, as long as we each got our favorite flavors, which ranged from chocolate to coffee to black raspberry. Hence, that one local family restaurant.

But when it came to bowling, we were clods. The balls were heavy. We dropped them. They careened into the foul lanes. Occasionally we did hit pins, though only when guided by the hand of luck. Skill sat off on the sidelines.

I remember scores of 27. Once, one of us bowled a 1.

Not surprisingly, when we grew up, although we continued seeing movies (in theaters) and eating ice-cream (or less calorie-loaded cousins like sherbet), we left bowling behind. We were oafs. We were so inept that bowling was sheer comedy, an opportunity to laugh at ourselves as a family.

Many years after I had last fit my fingers into a bowling ball, I read the groundbreaking, data-packed book Bowling Alone, by Robert Putnam. You’ve probably heard of it, or its premise: American were once avidly involved in social groups, from organized gatherings like Rotary and bowling leagues to informal visits with friends. But increasingly we don’t join groups and don’t see friends. In other words, we figuratively, and sometimes literally, bowl alone.

Putnam provides many reasons for this decline, most of which we could name: more solitary attractions like TV and computers, changes in family structure and work commitments that ask more of our time, a suburban environment where large lawns separate neighbors and cars are required to reach nearby stores.

Bowling Alone made me think about why I don’t belong to any organized groups. Pretty much all the reasons Putnam gave applied to me at that time. In addition to living in car-oriented suburbs, I was single, childless, lived alone, and had multiple part-time jobs. I supported organizations with donations, but lacked the time—and maybe the necessary level of passion—to give them my presence. I did better with friends, but wondered if I’d ever become someone who joined.

I felt guilty. Here I was, a voting, law-abiding citizen who always returned library books on time, held doors for strangers, and was consciously trying to be the good I wanted to see in the world. Yet for the most part, I was a lone bowler. Actually, I wasn’t a bowler. The thought of bowling gave me such feelings of incompetence that joining a league was out of the question.

The same, in its own way, applied to most other organized gatherings I could think of. I’d try to envision myself as an attendee and I’d imagine myself feeling socially clumsy. I was part of the problem, and I’d just have to accept that.

Then in 2001, I got married. My husband lived in an old, artsy, urban neighborhood in Wilmington, Delaware. It had narrow streets, generous porches, and a mix of ethnicities, ages, and sexual orientations, and pretty much everyone agreed that we were an actual community. Dog walkers, porch sitters, backyard gardeners would pause to chat, trading the news of their lives, commenting on the news of the day. Neighbors would help neighbors shovel snow and rake leaves. We would attend each other’s art openings, admire each other’s porch gardens. And the parties! Block parties, progressive dinners, backyard celebrations of seasons. I learned what it was like to belong.

And I realized that part of why I had, figuratively speaking, bowled alone was I hadn’t naturally found myself in a group that suited me. In this neighborhood, I could chat at the curb or drift into my house, attend parties or stay at home, make dear friends or keep it to acquaintances. I could do as much or as little as I wanted, the way I wanted. And so could everyone else. If our balls went into the gutter, no one cared.

It was luck, again, that guided my hand. Or may be it was something a little wiser than luck, because it gave me what I needed, and what would make me be the good I wanted in the world, without my even needing to try.

If you’d like to read about how this sense of community changed the course of my life, go to my most recent memoir. In hardback, it’s titled Building A Home With My Husband, and in the paperback, which comes out in May 2010, it’s titled The House On Teacher’s Lane. (Yes, it’s the same book, but with a different title and cover.)

You can also see my neighborhood in these two videos, both made by our neighborhood videographer, Tom Davis, whose professional name is TCDavis. The first one is from our block party this fall, and the second from the blizzard this winter. Both videos are about four minutes long, and give a good feel for the architecture, friendliness, and diversity of our community.