Facing death

Hospice is a Busy Place

by Carolyn Baker

Speaking Truth to Power

5 February, 2014

How soon will we accept this opportunity to be fully alive before we die?

Stephen Levine, A Year To Live: How To Live This Year As If It Were Your Last

Whenever the topic of near-term human extinction arises, I invariably hear comments like, “Well, if it’s true, I might as well lay down and die then.” I never fail to respond with my perspective that if there is anything we must not do, it is to “lay down and die.” Die we will, but it’s the laying down part that I cannot abide for the simple reason that we have a choice: to die lying on our butts under the influence of some recreational substance that keeps us in a state of mental and emotional oblivion (which does not arise from the same motivation as using medication to relieve pain) or to embrace our dying consciously and with intention. Why reject the former and choose the latter? The following fictional vignette may be instructive.

On a warm spring day, Maggie checked into hospice in a nearby town. At the age of 65, she had Stage Four ovarian cancer, and having refused chemotherapy and radiation treatments, her doctors recommended that she enter hospice as soon as possible. Without doing much research on this particular facility, Transitions, Maggie discovered that it had everything she could possibly want or need. She was accompanied by her son Bennie, age 41, his partner, Jason, and her dog Creature whom the facility allowed her to keep with her indefinitely. Creature was a medium-sized Beagle mix who hadn’t left Maggie’s side for at least ten years.

The rooms at Transitions were much to her liking. A comfortable bed, private bathroom, a small sofa, a TV and DVD player, and naturally, Bennie brought Maggie’s iPod which over the years she and Jason had loaded with a vast assortment of tunes. Throughout her life Maggie reveled in music, and particularly her grand piano. Saying goodbye to it in order to enter hospice was perhaps the most painful farewell of all. But Maggie’s collection of technical toys would not have been complete without her laptop which she quickly set up with Bennie’s help. She brought a small library as well, being careful to have access to all of Stephen Levine’s book, especially her worn copy of Who Dies?

Maggie had lost 20 pounds in the past two months, and most of her clothes were beginning to hang on her body. Doctors were certain that the cancer had spread to her liver, and her yellowing color appeared to confirm their assessment. Maggie, Bennie, Jason, and Creature toured the facility with a lovely nurse, and soon Maggie felt oriented but suddenly very tired, so she said goodbye to Bennie and Jason so that she could nap.

Maggie knew that her days were dramatically numbered. Her appetite had markedly diminished, and nothing tasted particularly good. She ate mostly vegetables, nuts, and fruit dutifully, not because she really wanted to eat anything because she didn’t. And while Maggie was working consciously to accept the inevitable, she also vowed to remain as lucid, vibrant, and functional as possible until the very end.

At dinner that evening Maggie picked and poked at her food, but she was thrilled to meet other patients at the table and beyond. Some were very ill and unable to walk; others had energetic moments and were able to sustain longer conversations and even laugh, play the piano in the lounge, or engage in board games. Maggie had not anticipated having a piano at Transitions, and so at least an hour of her “good days” was spent playing it. But that night at dinner, as she sat with other patients around the table, a man named Earl joined them, and his eyes and Maggie’s locked.

Soon Maggie found herself sitting in the lounge with Earl and listening to his story. He had been there a little more than a month and was able to get around with a walker most of the time. He had stomach cancer and was given only three months to live. Since he had lived one of those months already, his time was short. Maggie and Earl soon found themselves spending several hours together each day—that was, on days when they both felt up to it. They connected deeply and had a great deal in common beyond the loss of their spouses some years prior. In fact, although Maggie refused to write the words in her laptop journal, “soul mate” kept wafting through her mind.

And speaking of her laptop, Maggie spent as much time as possible each day visiting sites concerned with climate change, economic collapse, energy depletion, homelessness, animal welfare, and other issues. While she could no longer protest or help organize on behalf of her favorite causes, she was committed to being a “clicktivist” there in her quiet hospice room at Transitions. When her stamina permitted, she wrote letters and signed petitions and made comments on a variety of blogs and websites. She was determined to resist the corporate death machine until her last breath.

Maggie formed other friendships besides the one with Earl. Sometimes when she felt as if she needed to lie down, another patient would visit her, and they would chat until Maggie fell asleep. Always aware of the needs of others, Maggie often visited other patients, never failing to ask if there was anything she could do for them. Often Creature followed her to other rooms and assisted her in brightening the day of her human friends.

The pain in Maggie’s body was now intensifying, yet occasionally she had days that were almost pain-free. On one of those days she found herself in the lounge with a half-dozen other patients watching “The Bird Cage” for probably the tenth time in her life. Yet it was different this time because she caught herself thinking, “I’m sitting here in a hospice lounge, I have ovarian cancer, I probably have only a couple of months to live, we are all dying, yet we are all laughing hysterically.” Following her afternoon nap, Earl came to her room, and they sat on the sofa and chatted for at least an hour while Creature lay on the floor snoring. They talked about movies, comedy, about laughing hysterically while dying, and the endless ironies of their lives. During their conversation, a nurse peeked in and asked if either one of them would like a massage in the evening before bedtime. Maggie signed up, Earl wasn’t sure.

The following day was wrenching for Maggie. Bennie came to visit for awhile, but her abdominal pain was almost unbearable. She didn’t get out of bed all day and slept as much as possible. As the pain wore her down, Maggie began reminiscing, remembering stellar moments with her husband Bert and the kids—falling in love with Bert, the Christmases, birthdays, graduations; the time Bennie fell out of the tree and broke his arm, and the time that her beloved daughter Vicky had her first her period. Maggie then fell into deep sorrow about the fact that Vicky had moved so far away and hardly communicated with her anymore. (Vicky was working with Goldman Sachs in energy investments and had no patience with her mom’s ranting about climate change and Occupy Wall St). Vicky had two kids in college, and she and they lived far away. In fact, Maggie hadn’t seen her granddaughters for almost five years. They had sent cards and written to her when she was first diagnosed, but she hadn’t heard from them since, and she was almost certain that she would never see them again.

With the iPod headphones in place, Maggie clicked on Garth Brooks singing “The Dance,” and let the tears roll. Eventually, she fell asleep and woke up well past dinner, just long enough to know that she had missed it, then soon fell back to sleep until morning.

Yesterday’s deep reflection on her relationship with Vicky inspired Maggie to compose a hand-written letter to her daughter, apologizing to Vicky for specific ways she may have harmed her. Maggie wasn’t a martyr, nor did she blame herself entirely for the lack of connection between them, but more than anything, Maggie wanted Vicky to know how much she loved her, and she wanted to die knowing that she had reached out to Vicky one more time in a spirit of love and accountability.

In hospice, bad days are often followed by spectacular ones, and the next day, Maggie awoke feeling better than she had in months. Very little pain, even a spike in her appetite–and a desire to see Earl. Later in the day she slowly walked to Earl’s room and found him sitting quietly on his sofa, reading a book. Creature came along for the walk.

“Whatchya reading?” Maggie asked. Earl shared his historical novel with her, and they began another deep conversation. This time, something magical happened. Earl took her hand, looked deeply into her eyes and began telling her how much he liked her and how much their conversations meant to him. Maggie felt a rush of erotic energy pulsating through her body, and she looked deeply into Earl’s eyes, drinking in his tender compliments. Then Earl leaned over and kissed her. Suddenly, Maggie, 65 and Earl, 76 were making out like two teenagers in the back seat of a ’57 Chevy at a drive-in movie. Then gradually, they slowed down and composed themselves. Earl confessed, “My plumbing doesn’t really work anymore, but I’d love it if you just crawled in bed with me and I could hold you.” Maggie couldn’t get there fast enough, and for another hour, she snuggled in Earl’s arms as they reminisced together about their youth. Eventually, Earl fell asleep, and Maggie, quietly crawled out of bed, being careful not to disturb him. She kissed him gently on the cheek, and she and Creature went directly to the lounge where she began playing “Clair de Lune” on the piano followed by a medley of Debussy selections.

Maggie’s next month was a roller coaster of pain-wracked days, followed by days that were relatively pain-free and nourishing. She kept a daily journal and one morning wrote, “I’m dying, and I know I’m dying. That’s why I’m here. I can’t and won’t deny that, but I’m also living—maybe living fully for the first time in my life. My days are filled with wild fluctuations between misery and magic. When I can taste the food here, it’s heavenly. The staff and the other patients are lovely. So much compassion and caring here. For the first time in many years I have time to do nothing really but reflect. The closer I come to dying, the more I want to do that. I have more people to make amends to. I think I’ll spend today writing letters on my computer. Oh, and note to self: Make love as often as possible, not just with Earl but with all beings.”

Bennie came to visit every day, but today he came early. “Brought you a letter from Vicky.” Maggie was doubly surprised because she hadn’t received a letter from Vicky in over a year, and of course, she had just spent some hours pondering her relationship with Vicky and writing a letter of amends in longhand that she hadn’t had time to send yet. Bennie sat with Maggie as she read the letter from Vicky. Nothing profound, nothing containing much emotion at all, but at least Vicky had written. Maggie then asked Bennie if he would mail the letter she had written to Vicky as soon as possible. He promised he would.

When both Maggie and Earl felt well enough, they continued their not-so-secret trysts. On a couple of occasions, a staff member peeked in as they were sitting on a sofa together or as they played Scrabble in the lounge. No one said anything, but everyone knew of their close friendship. It was glaringly obvious, for when either one walked into the presence of the other, they both became as radiant as tenth-grade lovers.

Another month passed, and one morning Maggie was awakened at 4 AM by Creature. Wondering if he needed to go outside, which never happened in the middle of the night, Maggie sat up in her bed. Creature continued to pace. Then a quiet knock on the door. Her favorite night shift nurse, Karen, entered the room. Maggie mentioned that Creature had been pacing and may need to go outside. Karen said she would take him, but that first, she had something to tell Maggie. Oh dear, Maggie shuddered. What now? Karen then told Maggie that about an hour earlier, Earl had passed. Karen sat with Maggie and asked another staff member to take Creature outside. Maggie allowed herself to cry and not to hold back. Karen’s arm around Maggie quietly communicated a strong, nurturing presence and unrestricted permission to grieve this inevitable but wrenching loss.

The next day was not a good one for Maggie. So much emotional and physical pain. She had told Karen to wake her when Earl’s relatives came for his things. Karen fulfilled her promise and brought Earl’s daughter to Maggie’s room. They chatted briefly; however, Maggie’s pain was decidedly worse than it had ever been. “He spoke of you so often and thought so much of you,” said the young woman. “We’re glad that he had you in the final days of his life.”

Nestled lovingly behind Transitions was a two-acre swath of woods. On several good days, weather permitting, Maggie had trudged into them. On this day, as she felt the presence of Earl all around, above, and below her, Maggie walked slowly and contemplatively amid the trees. She was weak, and everything in her body hurt. Yet, she allowed herself not only to weep but to immerse herself in the healing presence of nature. She leaned over and picked up a handful of dirt, inhaling deeply the earthly fragrance. Rubbing the dirt between her palms, she then rubbed some on her face. Birds chirped gently, and the wind softly caressed the leaves of the trees. Although drowning in her sorrow, the words “I came from you, and I will return to you,” began burning themselves in her mind. It was now mid-September, and there was a bit of a nip in the air. A few leaves were falling from the trees. Yes, Maggie knew that she would soon follow Earl in making her own transition, but now she felt in every cell of her body the reality that she came from the earth and to the earth she would return. She knew that this had nothing to do with burial or cremation, but rather the origin of her essence. “The real Maggie erupted from the earth and will return to it,” she thought. This was the most profound awareness Maggie had ever experienced. As death approached, this realization was both life and death-altering.

Maggie had a number of activist and personal friends in the community. Nearly every day one of them had visited her for as long as she had been in hospice. Her pain was now increasing in both incidence and severity. The lounge with its glorious piano seemed like light years away. The possibility of getting out of bed and using the computer was becoming a distant memory. Even reading in bed was becoming impossible. Bennie came a couple of times a day, and Creature never left her side. The staff, ever so mindful of Maggie and Creature, attended to both of them diligently.

On one of the last occasions when Maggie was conscious for a visit from Bennie, she asked that at the time of her death, Creature be allowed to lie beside her in the bed. Both Bennie and the staff assured her that her request would be honored.

Two days later in the late afternoon, Karen placed a call to Bennie and asked him to come as soon as possible as Maggie’s vital signs were plummeting. Bennie immediately called Vicky, then he and Jason arrived at Transitions within ten minutes and stood by Maggie’s side as her breaths grew longer and slower. He gently picked Creature up and placed him next to Maggie on the bed. Creature seemed to know exactly what was happening and lay beside Maggie with a solemn reverence that animals express when one of their own is dying.

At 8:13 PM, with Creature, Bennie, Jason, and several friends at her side, Maggie breathed her last breath. Creature went to live with Bennie, Jason, and their twin chocolate Labrador Retrievers, Betty and Walter. Vicky helped Bennie and Jason create a celebration of life ceremony some weeks later, and at her request, Maggie’s ashes were spread in a park where she used to play as a child.

Indeed, if Maggie were writing this account of her last days, I’m certain she would agree with me that while she may have wanted to live parts of her life differently and may not have described her life as one well-lived, hers was a death “well-died.” One thing I know with certainty is that Maggie never agreed to “lay down and die.” Rather, she stood up and lived with passion, kindness, service to others, accountability, a commitment to creating joy and beauty, and an undying intimacy with nature and other species.

Are most people fortunate enough to die this way? Of course not. But when one has the option to die with conscious intention and a commitment to being awake and aware in the process, who would want to “lay down and die”? Hospice can be a busy place where more of life is lived at death’s door than has ever been lived in life’s playground. Hospice nurses say that people die the way they lived. However, there can be exceptions. It is possible for people who have lived mindlessly to die with extraordinary mindfulness. Maggie is a composite of characters I have known in my life who have taught me that how one lives matters enormously, but how one dies may matter even more. Whatever our fate—near-term extinction or the unexpected privilege of celebrating our one- hundredth birthday, is it not time to practice living as if we were already dead?

If our only spiritual practice were to live as though we were already dead, relating to all we meet, to all we do, as though it were our final moments in the world, what time would there be for old games or falsehoods or posturing? If we lived our life as though we were already dead, as though our children were already dead, how much time would there be for self-protection and the re-creation of ancient mirages? Only love would be appropriate, only the truth.

Stephen Levine, Who Dies?