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Death and Dying, Life and Living

The following are excerpts of talks given by Joan Karp[1] at workshops she led near Boston, Massachusetts, and Minneapolis, Minnesota, USA, in 2001.

To start, I’d like us to notice that we all have something big in common—we’re alive. It would be a good goal for all of us, at least once a day, to stop being so busy living and notice that we are alive. It’s often hard to pay attention to how significant that is, except under certain special conditions. It’s a nice thing.

Harvey[2] used to give a talk I called the “dayenu” talk—“dayenu” being the refrain of a song sung at Passover[3] seders.[4] It means, “It would have been enough.” The gist of the talk was that we humans not only get to be alive but we also get to be thinking and we get to be aware. We hit the jackpot of the lottery of the universe. It would have been enough if we’d just gotten to be alive, but we got all this, too.

I started leading workshops on death and dying because of my experiences with my mother when she had ovarian cancer, from which she eventually died. I was “fortunate” that her disease and resulting death were long and slow—it was a good opportunity. I had a long time to really appreciate my relationship with her, and to say goodbye. Also, with quick deaths it’s hard to keep discharging on them long enough, but this one was in my face for five years. I was thankful afterward (not during) that I had to keep looking at it. I worked hard in sessions, and things finally shifted. It became okay with me for my mother to die—still hard, but okay. I never, ever, thought I would feel that way. So, from my own experience, I know that with discharge things can look completely different from what one can imagine, including in this area.

After her death, I started leading workshops I called “Recovering from the Death of a Loved One.” I soon broadened the topic to address related needs. Since there is a close relationship between death and all forms of oppression, and between death and disability, health issues, and growing older, those topics got added. There’s also the fear of death. (Fear of death and death are completely different.) Other workshop topics have included the deaths or anticipated-and-worried-about future deaths of family members and other loved ones, suicide, violent deaths, multiple deaths, particular oppressed groups and death, women’s and men’s health issues, living with a life-threatening illness, and early life-and-death struggles. We have had groups for people who felt responsible for someone’s death, people who have felt like killing, and people who have killed. There have been groups for health-care workers and groups on war, being an ally to someone with a terminal disease, deciding to live forever, deciding to be alive, and Harvey.

DISCHARGE MAKES ALL THE DIFFERENCE

Often, people who have lost a loved one never recover from the loss, never think it is possible to recover from such a loss. However, with enough discharge you can recover and flourish after the deaths of loved ones. (There is a finite amount of distress attached to each loss—it only feels like the hard feelings will go on forever.) You can think of it as the dead person leaving you a gift: if you put enough work into recovering from the death, you come out not where you were before the person died, but way ahead, in terms of your life and re-emergence. Most of what you feel when someone dies is old, early hurts. Discharging on the death gives you an opportunity to work on many things you needed to work on anyway, some of which may have been held in place by unresolved issues in your relationship with that person. Now that she or he is dead, all kinds of things may be possible, and often necessary, to counsel on—things you couldn’t choose to look at otherwise.

As a counselor for someone who has just lost a loved one, it is usually most useful to follow the client’s lead—to offer permissive counseling, at least for a while. We’ve been taught to think that we know what someone feels, or should feel, when a loved one dies—for instance, we “know” that he or she must be very sad. It’s helpful to have no particular expectations, but rather follow the person’s lead, stay physically close when possible, and just be with her or him. Things will happen as the person is ready. If necessary, asking for pleasant memories can loosen things up. Also, it is often not possible for someone to be a client until all of the arrangements are over and friends and relatives have left.

Most people need to grieve the loss of a loved one for far longer than is commonly assumed. Eventually, some people may need to be counseled more actively to help them face letting go of the person who died and their own distress that has attached to the death. (Harvey’s direction to me at that stage was heartbreaking but useful: “You’re going off on this path, and she’s going off on that one, and she’s not looking back.”)

If someone close to you dies, if you don’t discharge enough, you can end up thinking about that person every day; it can be a strong pull on your attention. With the distresses discharged, that pull simply is not there. Harvey used to say that after someone dies, you have everything you ever had of that person. You don’t have an ongoing relationship with him or her, which is a real loss, but everything you ever had up to the point at which she or he died, you still have. And, if you discharge enough, you can have more. The distressed parts of your relationship get discharged—the patterns and the irrational feelings. What you have left is a clearer, more human and rational relationship with the person, who happens to not be in your presence anymore. This is why Tim[5] is pushing people to keep discharging about Harvey. People gain more and more from their relationship with him the more they discharge. There are still new things to get out of the relationship, even though he is not around anymore.

If you are trying to recover from a death that happened when you were young, it may feel like there’s no attention to work on it. That may be because people couldn’t listen to you as a child back then. Talking about what kind of attention you were given, or not given, after the death will often open things up. With violent deaths, it can be especially important to express absolute outrage and to remember that oppression could have played an up-front role.

If you discharge enough to get rid of the distresses, it becomes all right that the person has died, even though no one should ever have to die. (I think it’s an outrage that anyone’s life should have to end, for any reason. I don’t care how old someone is; that’s simply ageist oppression. I don’t care how sick he or she is; that’s disability oppression.) On the other hand, it’s okay that people die. Without distress, our attention stays on what a great thing it was that they lived and that we got to know them. So far, everybody dies. That’s not significant. What’s significant is the unique life they had and that you got to share in it. That’s very significant. That’s what is of interest, once the distresses are discharged. As I said in a “death announcement” about my mother: I will always be sorry she didn’t live forever, but I will always be very glad that she lived.

“IS DEATH NECESSARY?”

Harvey wrote a pamphlet (also a chapter in The Human Situation) called Is Death Necessary? One part describes how the scientific community is making big strides in understanding the physiological mechanisms that have brought human life to an end. There’s lots of research and there are many breakthroughs. People are hopeful about unlocking those secrets. The other part has to do with distress, which is what most people die from. Although, under present conditions, something else would have killed them later, most people die earlier than they would have because of their distresses. They give up. They get discouraged. They smoke cigarettes, they kill themselves with alcohol. Or they die from someone else’s distresses, or from oppression-related factors, like poor health care.

People can also have distress recordings that say it’s inevitable they will die. Those recordings are completely different from the reality. Many of us have distress recordings that tell us how long we’re going to live, and some of us have already passed that age. I remember the first time I took the direction “I am going to live forever,” to see what feelings it would challenge. What came up was that I was willing to endure certain distresses for a long-but-finite amount of time, but not an infinite amount of time. If I thought I might live forever, I would be more motivated to get rid of those distresses. Expecting, and not expecting, to die each has many implications.

The elders’ commitment is “I promise I will never die, I will never slow down, and I will have more fun than ever.” The attitude in our society, which most of us have internalized, is that after a certain point it’s time to prepare for death—it’s time to slow down and start limiting our activities, lowering our expectations, and all the rest. This can have devastating effects. If you take a different attitude toward a beloved elder—say, a grandmother—as some Co-Counselors have done, all of a sudden she can hear, because she got the wax taken out of her ears; she can see, because somebody thought to get her new glasses. Nobody thought it was worth looking into those problems before, because they were “age-related” or “she was going to die soon anyway.” Let’s challenge all our recorded notions about the kinds of older lives we are capable of.

SUPPORTING SOMEONE WITH A LIFE-THREATENING ILLNESS

I’ve learned some things about supporting someone with a life-threatening disease, about helping him or her to live well and then to die well. All of us will be offered many opportunities to take on this kind of role, and it is our decision if and when to do so. When we do, the chance to care about someone well will move our own re-emergence forward, especially if we remember to have regular sessions on it. (When a group of Co-Counselors works together in a situation like this, it’s good to meet in a support group, at least occasionally.)

My mother lived with cancer from 1982 to 1987. For most of that time the issue was not her dying—it was her living well while fighting a serious life-threatening illness and how best to help her do that. Back then it was a battle for me to face how big a difference I could make. I was up against confusions about my significance, and I kept trying to figure out what were the right contradictions for her. It took a while for me to face that I was the biggest contradiction—my caring about her, my wanting her to live. I have no doubt that I kept her alive perhaps a couple of years longer than she would have otherwise lived. There are many stories like that, both inside and outside of RC. People die from distress before the other things get to them. You can help someone live longer. It helps to take yourself that seriously.

People recover from illnesses from which it seems like no recovery is possible. It does happen. Nothing is inevitable. As a counselor you have to assume it is possible for this person. You get to stay hopeful. For a long time the most useful assumption you can make is that this person can and will recover. You also need to face and discharge on the possibility that she or he may well die, and you need to stay close to the person, listen to him or her, and offer a place where all the various feelings can be talked about.

When someone is faced with a life-threatening disease, it becomes apparent how useful it is to want to live, to be able to fight for one’s life. It also becomes apparent how hard that is for many of us. People in such circumstances often come up against early recordings—of giving up; of what were, or felt like, life-and-death struggles; of exhaustion; of actively not wanting to live (or not caring) because things were so hard. Without these recordings, people inherently want to live. However, many people find it difficult to get in touch with their own motivation to live, especially when they are suddenly required to. You can lend them your motivation—let them know that you care that they live, that their living is not a burden on you, that it is important to you that they live a long time. (It wouldn’t hurt for those of us who are healthy to get in touch with wanting to be alive, to have access to that motivation for ourselves, to get that work done ahead of time. It could make a difference.)

Many people try to “figure out” what distresses may have contributed to the development of their disease. That is often not a useful activity—there are so many random factors that can contribute to these illnesses, and it can lead to self-blame. However, it can be worthwhile to target and discharge particular distresses in order to assist with the recovery process.

It was clear that for my mother, feeling cared about and keeping her attention out[6] were important. (The body is going to fight disease much better, and a person is going to be more motivated to live, if the person’s attention is out, rather than sunk in distress.) Generally, my mother could have her attention either completely off anything hard or only on the hard feelings. By phone every day, I would make sure she got to tell me about both—the good things and the hard things. I tried not to impose structure on the conversations. I pulled her attention out, but I also didn’t want her to be isolated with the hard feelings. When I could hear that she was more discouraged than usual and might be in danger of giving up, I would appear at her doorstep in between my monthly visits and stay for a couple of days. I would let her know by my presence how much I cared about her, that I was committed to her, and that I wasn’t going to let her go through this alone. Her attention would always come out, and I think it made a big difference.

Especially when someone has a life-threatening disease, people get scared and can’t stay close, can’t listen. They keep a distance. The longer the illness goes on, the more likely it is that you are the only one who has good attention for that person. If you’re discharging, you’ll be able to stay with the person and not flinch from what she or he is facing.

As my mother gave up on the medical profession curing her, and the medical profession gave up, too, she became more open to having “formal” counseling sessions with me. I spent time listening to her cry about not wanting to die, about being afraid. It was quite lovely to get to do that.

“QUALITY OF LIFE”

“Quality of life” is a restimulating issue in this society. At what point is the quality of someone’s life such that his or her life is no longer “worth” living? Although people think they are thinking about this issue, hardly anybody is. Why are people so restimulated by it? One reason seems to be the undischarged distress left over from being a baby who’s dependent and needs to be taken care of. Many people feel that they would never want to be in a position like that again. Also, it can be difficult for people to think about their situations when they feel like their lives have become a burden to others. Fears about pain confuse people as well.

Some people assume that they know when someone else’s quality of life is no longer good enough to warrant living. An RCer who is a medical ethicist often asks an important question when she speaks on this topic: “What, for you, is worse than death? What would make you feel like you would rather be dead?” Whatever that is, it’s what we cannot bear to see someone else go through. When someone seems to be going through that, we may be pulled to make an assumption for her or him about quality of life issues that is not accurate for that person at all. (It may not be accurate for us either, should we find ourselves in that situation.)

I know that as my mother was able to do less and less, she savored life more and more. She loved simply being alive. I learned a lot from that. It wasn’t a question of what she could do. We can be so caught up in7 all the different pieces of it that we think the details are what makes being alive worthwhile.

As my mother’s disease progressed, disability issues and disability oppression became a bigger part of what she was struggling with. Because I had not discharged enough in these areas, I felt more limited than I would have liked. I think this is not uncommon.

HELPING SOMEONE TO DIE WELL

At some point your efforts may need to shift from helping someone live a good life to helping him or her face death and prepare for a good death. As my mother’s chances of recovery became more remote, I started to say things like, “It’s not impossible for you to beat this, but it’s looking less likely.” It seemed important not to give up on the possibility of recovery but also to create space for her to look directly at the fact that she was getting close to dying. It seemed important for her to face that situation, and her fears about it, and to think about what she wanted to do before she died. One useful thing was getting her to tell me her life story. It was wonderful for both of us and enabled her to review some parts of her life, with caring attention. Sometimes it can be important to give someone your “permission” to die, especially if the person is concerned about letting you down.[7]

In the end her kidneys failed, and there was no option of dialysis. This meant that she, and we, knew that she had about two weeks left to live. She was ready, and we (my siblings, her husband, and I) set aside the time to be with her in the hospital and knew exactly what it was for. At the beginning, we brought in picture albums to get everyone’s attention out, to review pleasant memories. Later on, when it seemed she wouldn’t be able to summon help for herself should she need it, we switched to being with her twenty-four hours a day.

Then shortly before she died, the sweet time we’d been having changed and she got pissy.[8] (This was a woman who didn’t usually show that.) Whether it was from poisoning due to her failing kidneys or from fears related to dying, it was unexpected and difficult for all of us. Also, because she lived longer than predicted, she got scared that people had lied to her and that she was going to be alive in this state for a long time. I found myself in the unusual situation of reassuring her that she really was going to die soon.

In terms of scheduling my own counseling, I finally figured out how to handle the impossibility of predicting when I might be free. A couple of people were on call each day, or for parts of the day, who knew they might not hear from me. Sometimes I could fit in a phone session, sometimes a session in person with local folks I knew, and sometimes nothing at all. That worked well.

In addition to giving attention to the person who is dying, other relationships need to be thought about. My siblings and I negotiated our differing opinions about my mother’s care. One of my sisters liked handling our relatives. We also had to make relationships with the health-care workers. I was struck by[9] one nurse who wasn’t so great with my mother at first but who got softer and softer with her as she got pissier, understanding that she was getting closer to death. When my mother died, she sat by her bedside and cried.

You can let people know before they die that they led a good life. Wouldn’t you like to die remembering that you had led a good life? You can also remind them that they are loved, especially by you, and do whatever discharging you have to do to be able to feel that and mean it.

No one should have to die alone. There are a lot of stories in which the beloved grandparent waits for the beloved grandchild to arrive before she or he dies. If you tell someone you’d like to see him or her before he or she dies, that you’d like to be there, there’s often some leeway. Or you can help arrange for someone else to be there. I was with my mother when she died, and I was glad that I was. Death is part of life. Being present at a death can be a good experience.

There’s lots I’d do better or differently now, but overall I was pleased. It was a challenging time but also an incredibly special time.

 

 

 

                                                                                                                        

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

                                                                                                                         

 

[1] Joan Karp is the Regional Reference Person for parts of eastern Massachusetts and Rhode Island, USA.

[2] Harvey Jackins

[3] Passover is a Jewish holiday commemorating the Hebrews’ liberation from slavery in Egypt.

[4] A seder is a Jewish home or community service, including a ceremonial dinner, held on the first and second evenings of Passover.

[5] Tim Jackins

[6] Keeping her attention out means keeping her attention off her distresses and on good reality.

[7] Letting you down means disappointing you, failing you.

[8] Pissy means irritable and angry.

[9] Struck by means surprised and impressed by.


Last modified: 2016-08-17 21:31:46+00