When her lover, Joanne, died after a yearlong debilitating illness in 1996, Cheryl Jones was elated. The joy lasted a full six weeks.
Jones doesn’t expect people to understand, but she is willing to explain.
“There was no unfinished business between us,” said Jones, a psychotherapist in Oakland. “The simple fact is her body stopped. I was so close to Joanne, in a way I felt I went with her. Wherever she went was a good place. I don’t know where people go; I don’t expect to know until I do it myself.”
But Jones isn’t afraid of the concept anymore.
“I carried a lot of fear about death,” she said. “Joanne showed me how to feel more alive, to be more open, even in her last days. She accepted the fact she didn’t want to go. Acceptance didn’t mean feeling jolly or she liked the situation, just that this was truth at the moment. Her diagnosis helped us reshape our priorities.”
Hearing the news of limited time to live - days, months, a year - is undoubtedly the most urgent of wakeup calls. There is much to be learned from patients during such experiences; you might even call it a gift passed from the dying to the rest of us. In any case, facing death is hard work filled with surprises.
“I closed up my law practice last summer when I started to get sick all the time,” said Arthur Martin, a San Francisco attorney who is HIV-positive. “I was figuring to get things wrapped up before dying.”
But after going on a program of protease inhibitors, the new HIV-AIDS drugs that are succeeding in reducing viral loads, Martin says he is feeling much more hopeful about the future. Yet he is far from happy about how he lived during what he once believed was his final year.
“I spent the whole time knotted up physically,” he said. “I was living my symptoms first and my heart and mind second.”
How would you change your life if you were diagnosed with one year to live?
There is no one correct formula, only countless equations. But Stephen Levine, a New Mexico-based therapist and author who has worked with dying people, has discovered some real-life answers to a real tough question.
His latest book, and an accompanying series of workshops, takes a logical next step: He challenges healthy people to act as if the next 12 months were the last. Jones and Martin are both embarking on the program presented in the book, “One Year to Live: How to Live This Year as If It Were Your Last” (Bell Tower), and Levine is hoping to win over thousands of converts in the coming months. His goal is to create an urgency that acts as a springboard to more wide-open mental spaces.
“Fear is what stops you from taking risk, such as changing jobs, getting a divorce, moving to another city,” he said.
“Whenever people hear they are dying, they almost always get past the fear. In the process, they feel an incredible amount of release and freedom. People say something first tightens in the gut, then releases.”
Of course, the first stop for most patients with a terminal diagnosis is disillusionment. The gift is in how people stand up to death, surely not in the dying itself.
“There is lots of anger directed toward God or some higher power,” Levine said. “It is an issue that needs to be acknowledged.”
In his new program, Levine is following the teachings of Socrates, Gandhi and the Dalai Lama, who all have emphasized “the practice of dying” or being fully alive even when healthy. Levine refers to it as racing against death to complete our birth, to fulfill the heart’s destiny.
Levine’s program aims to circumvent human nature - which is to put off today, especially the big life decisions, what can wait until tomorrow or next year or next decade. Instead, we cram our lives with pending diversions such as job hassles, family errands and what to eat for dinner.
The late Beatle, John Lennon, had a point when he said, “Life is what happens when you are busy making other plans.”
“I call it futuring,” said Levine. “We obsess about what’s next and forget about right now. There’s also the temptation to be lost in the past.”
Levine said just thinking your next year might be the last one can change your approach to mental well-being. It can alter the security you feel in a “timelessness” that allows you to put off mending important relationships or dreams about different careers.
“If we imagine the future is not there,” he said, “our appreciation of the present will increase. Simply visualizing it can change us on the subconscious level.”
Referring to his work with hundreds of dying patients, Levine said surprisingly few actually run off to some tropical island or similar escape route, though he knows some people who take religious pilgrimages and others who have quit the monastery. People typically choose to “face their demons,” which inspired his new program.
It is common for patients to have regrets in their final days, said Levine, listing these as the top five, not necessarily in order:
People were sorry they didn’t reach their goals or dreams, particularly in terms of money and status.
Many individuals would have changed jobs, working less for the money and prestige and more for personal satisfaction and social good.
Spouses wished they would have filed for divorce rather than sticking with a mismatched partner because it was “safe.”
A fair percentage of people regretted they didn’t play more, have more fun. This is especially true for patients struck with illness in the mid-career years between 30 and 50.
Successful people, in terms of money and status, realized it wasn’t enough, that there was so little joy in their lives.
Levine has designed a one-year agenda that can help people to avoid such regrets. He doesn’t promise an easy 12 months.
“You will probably discover some things you don’t like about yourself or life situation or both,” he said.
Jones, who now works with many patients diagnosed with terminal illnesses, cautions that this kind of introspection can backfire. People can be left with a sense of failure if their expectations are not met.
“We get into a ‘thought police’ mode in this country,” she said, “even with the New Age perspective. People have this picture they will go through the process reaching a point of peace and being ready to die.
“It doesn’t necessarily happen that way. Then people feel they have failed at death.”
In his approach, Levine discourages people from judging themselves, aiming instead for honesty and self-acceptance.
The cornerstone of his program is two types of meditations that start with a focused breathing technique in which the abdomen is relaxed.
The first exercise is what he calls the forgiveness meditation, intended to “forgive the actor and not necessarily the act.” You might have several family members, friends and associates who need forgiveness, and it’s equally likely you need several of those people to forgive you for some past transgression.
“The forgiveness meditations are a lot of work,” Martin said. “Don’t try them all in one day or even one week.”
Levine’s gratitude meditation goes an additional step. It is a tool for starting to recognize the positives.
“This is basically a broken-hearted country,” he explained. “But nobody talks about gratitude.
“It is a state of thankfulness that expands life. We learn to be happy for others, share in the joy, appreciate every small and great happiness that comes our way.”
Levine said people learn from stopping in their usual busy schedule for even a few minutes to think about these issues.
“The meditations help me to make a choice every day when I wake up, either to stop doing something I don’t want to do or change my approach,” said Dr. Leonard Zwelling, a cancer specialist who supervises the clinical research programs at the University of Texas M.D. Anderson Cancer Center in Houston. “I also have made the decision to never work on weekends anymore, to be more present with my family.”
Zwelling said Levine’s book has even helped with his golf game: “I am more present on the course. I don’t worry about the last shot. It really works.”
Levine has other suggestions to live a more urgent, full life.
One is to make daily entries in a journal, noting “recurring states of mind” like fear, anger, insight, joy, love, clarity.
Another is adopting a personal song, a modern-day version of ancient death chants. The song can be any tune with words - Levine said he has heard people sing “Row, row, row your boat” in their final breaths - but the key is to sing it every day with all of your heart. (The shower seems a good place to belt it out.)
“Once that song becomes part of your life, it will change you,” said Levine. “It did for me during my one-year-to-live experience.
“The song itself may change many times in 12 months, and specific songs may shorten to one verse or line. The key is to sing every day.”
Levine said workshop participants already embarking on his “A Year to Live” program are not necessarily quitting jobs, though many have cut back on hours and stopped taking home so much paperwork in the briefcase or backpack. It is a critical issue, he said.
“People in European countries think Americans lack creativity with their money,” explained Levine. “Instead of finding ways to live life more fully, such as taking longer vacations or experiencing nature, Europeans think we tend to simply work more and increase our greed.”
There is truth in that argument, Levine said.
“When people are honest with themselves, they see that as they slowly gained more authority and responsibility, life got smaller,” he said.
“I’m not suggesting everyone quit their jobs as much as look for more joy and gratitude in their days.”