Wednesday, June 17, 2008
The end of another full and rich day. I just had my third helping of Claire’s incredible peach/blueberry crisp, made without dairy, wheat or sugar. Then a gang of us bundled out and walked out to the ocean and then up the road to see the full moon. She was beautiful.
As Michael predicted the other day, all of us are falling in love with each other. As each person’s life story unfolds, it is clear that we are all so much more than the illness we carry. In this safe space full of generosity, bounty and love, we are all unwinding, and the bond we share because of this disease is bringing us closer.
Today after yoga, breakfast, our morning support group, and lunch, I had my individual session with Lenore, who has got to be one of the most gifted therapists I’ve ever seen. I left that session with gratitude and insight into my role in keeping my marriage from being all that it can be and a vision of what I can do to move closer to love.
Afterwards I called home. Then I read and slept and woke up in time for yet another meal. I won’t describe them all because that might make you too hungry. But Claire’s magic was enjoyed by all. At this retreat, staff and workshop participants eat and socialize together. There is no artificial separation or distancing. We are all comfortable together.
At lunch today, a sheet was passed out to make sure all of our contact information was correct. The most striking thing was that there are more people staffing this retreat than participants! No wonder we feel so enveloped.
Tonight, we had our third evening session with Michael and Lenore. The topics were pain and suffering, and death and dying. Michael opened things up by saying, “If I talk about pain and suffering first, everyone will be holding their breath waiting until we talk about death and dying, so I’m going to talk about that first.”
He continued, “What sacred ground we walk when we talk about this passage we will all go through and that everyone we love will go through. We enter into a great mystery, a wordless place when we discuss this question.”
Lenore talked about the importance of this evening, saying that it gave all of us the chance to talk about things we might not be able to talk about with friends and family. Questions like whether to hasten death when there is great suffering.
“Wouldn’t it be amazing,” Lenore asked us, “to take this sacred, inevitable experience and do it in the most conscious loving way? We all need to be able to reflect on how to end our lives and also what we want to teach our children and our family in our passing.”
Michael had us all go around and talk about what we believe happens when we die. Next we answered the questions: “What’s your hope about what will happen when it’s time for you to die?” And “What would you like your family and friends to learn from your passing?”
After we each spoke, Lenore mentioned all the books that have been written in the past five years about “the good death.” “Sometimes,” she said, “It can feel like one more injunction of something we have to do well.” Then she paused. “The best thing about death is being prepared. Ask people if they’ll be there for you. Have a plan. Consider what you want and talk about it with your family. It’s important that you all be on the same page, that the people you love and care about know what you want. Where do you want to die? Who do you want to be there? What do you want to happen at your funeral? It’s worthy of a conversation.” Then she concluded, “You plan for your wedding. You plan for college. You can plan for this, too.”
Michael talked about the power of making the space you die in a sacred space. You can shift the physical environment so everyone who walks into the room senses that something holy is going on.
We discussed working with people who don’t want to face the reality that we are going to die, who insist we keep a “positive attitude” (ie. never talk about death) or who harbor the false assumption that talking about death somehow hastens death or means we’ve given up on living.
Lenore talked about the first conversation she had with her grown children about her own death. “I said to them, ‘I have no intention to die now or in a month or next year. I have a tremendous zest for life, but I want to introduce the conversation.’”
Initiating this conversation may be more challenging when we have a life-threatening illness, and even more so if our cancer has metastasized. But nonetheless, it is still important to talk about it.
Michael concluded, “It is a tremendous gift to the person facing death and to their family and friends to invest time and thought into this. It doesn’t mean you’ve given up the fight for life. By addressing the legitimate fears and anxieties, you can put them aside and focus on life.”
Moving on to the subject of pain and suffering, Michael said, “In the 22 years we’ve done the Cancer Help Program, we’ve heard about a lot of deaths of alumni. Mostly we hear that they were wonderful deaths. The kinds of people who come here and the kinds of preparations they make the kind of people they surround themselves with make it work out well.”
He went on, “It’s a matter of skill to make it work out. It takes conscious effort to limit the amount of pain and suffering. Depending on the kind of cancer you have, there are only a finite number of ways your death might come about. You need to find out what they are and have a plan to respond to each of them. If you have a kind of cancer where there’s a possibility of an acute pain situation, you can make sure you have heavy-duty painkillers on hand beforehand. If it’s a lung situation and your breathing might become impaired, you can have enough morphine on hand ahead of time so you won’t have to struggle to breathe. When there are a limited number of possible outcomes, and you address each one with clarity and skill, your death can go well.”
Michael continued, “People spend hundreds of hours on the Internet researching alternative therapies. It may or may not be time well spent. Time figuring out how to die is almost always 100% well spent.”
We then discussed the differences in quality between different hospices, the fact that managed care agencies often won’t authorize the pain meds you need right away, and that you (or your representative) may have to fight for them. We learned that its essential to have someone who really knows pain management on your care team and that most oncologists are not trained in pain management and as a result, often do an inadequate job.
Michael said, “I believe pain control is one of the things modern medicine does best. Over 90% of cancer pain can be adequately controlled. It’s a scandal when cancer patients don’t get the pain meds and pain relief they need.”
The critical person in Hospice care, Michael said, is the home health care worker. “Put aside enough money or have people pitch in enough money that you can have a skilled home health care person if you need it. That person is like a midwife. Make sure you get an angel, someone who’s spiritually into this as a way of life. Finding the right person is an enormously important thing to do.”
Then we moved on to the experience of pain itself. Lenore and Michael talked about the fact that the meaning we give to our pain can magnify our pain—that the actual pain signal can be amplified by the way we interpret it. Michael explained, “By skillfully working with emotional pain, we don’t have to address it somatically. Your actual physical pain decreases and you need less medication.”
Acupuncture, imagery, relaxation and hypnotherapy can also reduce our pain and lower our need for pain medication.
Michael concluded, “Learning to work with pain, both physical and emotional, is one of our greatest life lessons. When pain and suffering come at us, how do we respond? How do you use suffering? That is the spiritual question. Pain can terrify us and shut us down or it can purify us. Suffering has the possibility of bring out something within us that all the great religions teach. If you run away from it, it will pursue you. Or you can choose to move toward it.”
Far from being depressing or morbid, having an honest place to talk about these realities that all of us will experience in the course of our lives was a relief. I think all of us were inspired to go home and continue to have this dialogue with our families.