Tag Archive | Bereavement

In Honor of…Thoughts on bereavement from someone who knows

img_0775_2I have probably sat with a hundred or so bereaved people at this point.  I have listened to their stories, cried with them, opened my heart to them, and been a compassionate witness to their suffering because I know from my own experience that whatever the circumstances of the death, the grief in losing a loved one is deep, and profound, and can shake the very core of one’s being. I’m posting this Q&A about bereavement on my blog to honor those who lost their lives in a historic Charleston, SC, church last week in just the latest mass shooting in America, this one sadly a reflection not only of the disastrous stranglehold guns have in this country but of our continuing legacy of racism. I’m also posting it in honor of the wonderful Patty Donovan-Duff, who in 1995 founded the Bereavement Center of Westchester and the Tree House, a wonderful program for bereaved children and their parents where I have had the honor to be involved for a number of years, running the parents group under Patty’s gentle and expert oversight.  Patty is retiring this year and the outpouring of love for her and admiration for what she has done in creating these wonderful programs was truly something to behold.  Her thoughts on bereavement from this 2008 interview are worth reading.  Here’s the link to the full article: http://www.insighttrails.com/blog/2008/03/qa-patricia-don.html

Q&A: Patricia Donovan-Duff, Director, Bereavement Center of Westchester
By Jon Berry

A GRIEVING HUSBAND LOOPS THROUGH THE CEMETERY on his daily run to visit his wife’s grave. A grandfather who had a decades-long romance with his wife finds after her death that he can love again. A child decorates a pillow commemorating his father with his dad’s beloved silk neckties.

Patricia Donovan-Duff, the founding director of the Bereavement Center of Westchester, in Tuckahoe, NY, has seen people express grief and healing in many ways. Her response is always the same: It’s all OK. There is no one way to mourn.

Since opening in 1995, the Bereavement Center has provided a safe place for thousands of people to talk about the death of a loved one. They come for eight-week groups for children and their families at the Tree House, the center’s children’s program. They come for groups for adults mourning the loss of children, spouses, parents, or siblings, and for individual counseling. The non-profit organization also offers educational and on-site support programs for schools and communities.

Donovan-Duff describes it as sacred work. It is done by a staff of social workers and nurses complemented by 70-plus volunteer facilitators trained by the center.   The main requirement, she says, is to be a good listener.

A registered nurse, Donovan-Duff previously was bereavement coordinator for the Phelps Hospital Hospice Program in Sleepy Hollow, NY. She is a founding board member of the National Alliance for Grieving Children, an organization for the more than 300 grief-support programs. The Bereavement Center is a program of Lawrence Community Health Services, which also operates Jansen Hospice & Palliative Care and Lawrence Home Care.

I talked with Donovan-Duff about the grief process – a topic that is still relatively new in our culture – and how she came to this calling.

QUESTION: When the Bereavement Center was started, there weren’t many programs like it. Did you have a model?

DONOVAN-DUFF: The Dougy Center, in Portland, Oregon. It was started 25 years ago by a nurse working on a pediatric oncology unit. She noticed that kids would come in saying, “What happened to Joey? He isn’t here.” Nobody would tell them that the child had died. They were afraid the kids would be scared that they would die. But guess what? The kids were already afraid. So, the nurse’s approach was, “Let’s talk with them.”

Q: It’s remarkable that this field has grown from that one center in Portland to more than 300 today.

A: It’s a movement.

Q: What is behind it?

A: Elizabeth Kubler-Ross had a great deal to do with it. In her book On Death and Dying, she wrote about the stages of dying, which she later changed to phases – coming to terms with death is not a linear process. When I started in hospice work 24 years ago, it was very hard to talk with doctors about death and dying. Today people use words like “die,” and talk about the needs of dying people, like the need to not be in pain and not be alone. Hospice opened that conversation up. The grief movement, I think, came out of the hospice movement.

If you talk with someone who went through a death in the family as a child 25-30 years ago, they remember pictures being taken out of the room. The person’s name wasn’t spoken. It was like nothing had happened. We see remnants when our volunteers come in to take training and talk about their experiences. They’ll say nobody ever talked with them. Some weren’t allowed to go to the funeral.

I think what we do is a very big wellness program. The message is that grief is the natural and normal reaction to a death. It’s painful. It can look like chronic depression, but it’s something different. Historically the medical world has treated grief with medication or by telling people to exercise. We say, “Let’s talk. Tell us the story.”

“I think what we do is a very big wellness program. The message is that grief is the natural and normal reaction to a death… We say, ‘Let’s talk. Tell us the story.’”

Q: What happens when people don’t talk about their grief?

A: I think it resurfaces when the next death happens. The psyche can do an amazing job of repressing. But the memory is still there. I think a lot of mental health issues are due to losses that weren’t attended to.

Q: What are the biggest concerns of people dealing with the death of a loved one?

A: That they’re going crazy. They don’t understand what they’re going through. Grief can be all-encompassing. People think there’s something wrong with them if, five months after a death, they can’t concentrate at their job. But it’s normal. That’s what we say all the time: Everything’s normal. There is no right way or wrong way to grieve. There’s just your way.

Grief can be like a roller coaster. You can feel happy, then sad, then happy, then sad. When you’re going through those feelings, you don’t know they’re normal. You feel you should be getting better: better-better-better. But grief is better, not better, better…then you may hit a bottom. The other metaphor is that grief comes in waves: You turn the corner of the A&P, and burst out crying.

“Grief can be like a roller coaster. You can feel happy, then sad, then happy, then sad….You feel you should be getting better: better-better-better. But grief is better, not better, better…then you may hit a bottom.”

People in this work have come to see that there are tasks of grieving. The first task is to accept the reality of what’s happened. I was with a woman yesterday whose husband died on Saturday. She said, “I heard you do bereavement counseling. I think I’m fine, but I might need a group at some point.” She said she hadn’t cried. I asked, “Have you thought that maybe you’re in a little shock, that it hasn’t permeated your body, in every pore, that your husband has died?” And the woman, who was in 60s or 70s, looked at me and said, “Yes, I forget about it sometimes. I woke up this morning, and it took me a minute before I remembered.” The first task is to accept, “OK, it’s happened.”

The second task is to feel the feelings – experience the pain. That’s the hardest part. It’s when you’re missing the person who’s died. It hurts physically. It hurts emotionally. We ask people to tell their story again and again and again. People need to tell the story of someone’s death more than once. The more you tell it, the more real it becomes, and the more you remember. When I had my babies, I needed to tell people the story of everything that happened over and over again. The same thing needs to happen at the end of life when someone dies.

Q: How do you help people access their feelings?

A: We talk about how you are now. What are you going through? What are your worries and concerns? In talking about what’s going on now, feelings come out. The feelings may be good, but they also may be ones you’re afraid to talk about, like guilt or regrets. Sometimes there’s ambivalence. It might not have been a great relationship.

Everybody is different. Sometimes families don’t understand the reactions of different children. One child is crying, the other’s not. We’ll ask, what were they like before? You grieve in character. If you were a crier before, you’ll probably be a crier now.

“Sometimes families don’t understand the reactions of different children. One child is crying, the other’s not. We’ll ask, what were they like before? You grieve in character. If you were a crier before, you’ll probably be a crier now.”

The next task is to learn to remember, to commemorate the person who died, in your own way. You might put up a small shrine with pictures and candles. You might have pictures next to your bed. You might go to the cemetery. You might wear a heart necklace with with a photo of the person. Every way is OK.

One of the beauties of groups is that they normalize. Support groups are wonderful that way. People talk to other people and realize, “I’m not the only one who hasn’t given the clothing away, and it’s been two years.” “I’m not the only one who goes to the cemetery every day.”

In a group I ran years ago, there was a young widower with little children. Midway through the eight-week group, he felt safe enough to share how he remembered his wife. He said, “I’m a runner, and the cemetery is in my town. Every morning, I run, and I go to the cemetery, and I lie down on her grave.” There was quiet in the room. He looked around the group. He knew he was revealing something that could go either way. Were people going to say he was crazy? And the group said, “Oh, that’s so wonderful.” He had such a sense of relief.

When somebody dies, there’s a real fear that you’re going to forget them. You’re going to forget their voice, what they look like. In the beginning, when someone has just died, you think, “Where the hell are you? Where did you go?” Even if you believe in heaven, you ask, “Where are you?” One of the goals in grieving is to bring the memory of the person inside your heart. In the beginning the memory’s too painful – you can’t bring that person inside you forever yet. But eventually, they’re just with you.

“When somebody dies, there’s a real fear that you’re going to forget them. You’re going to forget their voice, what they look like. In the beginning, when someone has just died, you think, ‘Where the hell are you? Where did you go?’… One of the goals in grieving is to bring the memory of the person inside your heart.”

Q: We live in a culture that goes so fast. How do you help people slow down and hear what’s going on inside them?

A: Hopefully they have a certain experience in the group or in individual counseling – a pause that happens when people feel someone is truly listening to them. People going through grief need to surround themselves with people who will listen and be with them. There are a lot of casualties after a death – friends who are not there for you, family members who don’t understand. We ask people who are grieving, “What do you need?” “I need someone to just listen and not tell me what to do or what to feel.” “OK, find that person in the next week. Who can do that for you? That’s a need you have.” “Well, maybe my friend Ann. She’s a good listener.”

We say this to kids, too. In our society, adults are not good at listening to sad stories, especially from kids. They don’t want to see sad kids. They want you to be better. They want you to be fixed. People are fine for a little bit, then they say, “OK, we want the old Patty back now.” We tell people to give somebody the job to be your special friend, who you can call up and say, “I just need to cry. I need to remember. Would you let me do that?”

A lot of this is common sense. But I think in many ways, we as a society have lost our connection with our instincts. We don’t trust ourselves. We tell people, “Trust your gut that you know what you need. If you need to stay home from work one day because you just need to cry or go to the cemetery, do that. It’s OK.” It’s like taking an antibiotic. Attend to your wound. This doesn’t get better by itself. It doesn’t get better with time. It’s what you do with that time.

“We tell people, ‘Trust your gut that you know what you need. If you need to stay home from work one day because you just need to cry or go to the cemetery, do that. It’s OK.’…Attend to your wound. This doesn’t get better by itself. It doesn’t get better with time. It’s what you do with that time.”

The next task is to start to reinvest in the world. The focus is less on the person who died and more on you. You learn who you are without this person who died. People are different after a profound death. It changes them. They can become better people. They can learn through that process and grow.

Q: Are there things that people have said, who have come out the other side of mourning,  that have stuck with you?

A: There was one wonderful man who came in after his wife died. They had an amazingly close, storybook relationship. He was grieving her so intensely. He really wanted to die some days. He wasn’t going to do anything with that feeling – he had grandchildren – but that’s how bad his pain was. He went to the cemetery every single day. I never would have imagined that he would have a relationship with another woman, but, today, he does. He’s never going to marry her. His wife was his one true love. In his wildest dreams, he probably never would have envisioned that he would be enjoying life again. He still misses his wife, and always will. But he’s different now.

We’ve had people who have come back to volunteer at the center because they want to give back. I’m in the middle of a volunteer training right now. It’s amazing. The world just stops: We’re talking about death, dying and grief. There’s such silence and presence.

Our goal is to teach volunteers how to be present. One of the nights of the training is about sharing a loss that you’ve had. We do a guided meditation, then divide into groups of two. For half an hour, the two people tell their story to each other. We then come back together and talk about what it’s like to have somebody really listen to us. Some people have never experienced anything like it. Our world today is so much about phones and computers and multitasking, we’ve forgotten how to be present for someone. The biggest gift you can give anybody is to let them know that you hear what they’re saying.

“Our goal is to teach volunteers how to be present…. The biggest gift you can give anybody is to let them know that you hear what they’re saying.

Q: What kinds of rituals do you use to help clients open up?

A: Simple rituals. At the beginning of every session, people introduce themselves saying, “Hi, my name is ___, and my mom died.” It’s a ritual of articulating the death and accepting the reality. For children, this can be really hard. They may not want to say it. They can pass. There’s also a checking-in about how the week has been.

Our rituals are more focused at the end of the group. One of our goals in these eight-week groups is teaching them all, children through adults, how to deal with loss. Hopefully we are planting seeds that they can use in the future.

We have a goodbye ritual the last night. In the adult group, it might be having stones on a plate. You take a stone, hold it, and say a wish for yourself and a wish for the group. The stone will be passed around, and everyone will touch it and bring it back. It’s a way of saying goodbye to each other.

In the Tree House, with the kids, we have a ritual at the end called the Memory Pillows. We start with blank canvas pillow cases. We put pictures of the person who died on the pillow case. For the last three weeks, the kids decorate the pillow cases in their own individual way. They draw pictures. They write letters to put inside the pillow. One little boy decorated his with his dad’s neckties; the dad had a magnificent collection of silk ties. Then we put pillows in and close them up. On the last night, we put up a painting of a tree on a big drop cloth. We’ll remember each person who died. The family will come up and hang their pillow on the tree. By the end we have a huge mural. In a very visual way, the kids see that they’re not the only one going through the death of a loved one. They see they’re all different and have done this work in different ways, and it’s all right. It’s good to remember, any way you want to remember.

“In a very visual way, the kids see that they’re not the only one going through the death of a loved one. They see they’re all different and have done this work in different ways.”

Q: In what ways is this spiritual work?

A: It connects human beings on such a very, very basic level. I consider that sacred work. I think that’s what this world is about, being present and connecting with people.

Q: How did you get into this field?

A: I became a nurse because I wanted to help people.

Q: When did you first feel that?

A: As a kid. I was raised Catholic. Along with the guilt – which everyone talks about – being raised Catholic made me want to be a better person. I always knew I’d be in a helping profession. I wanted to be a nurse all through high school. I liked healing, the hospitals, the white uniforms. I loved being in the middle of crisis and being with people.

When I went to college, I majored in nursing. They were just starting nursing degrees. I discovered psychiatric nursing, and thought, “Whoa, this is great.” I loved it. I was drawn to it.

I think I was also drawn to death. I was scared of death when I was young. There were no big deaths in my family. But my best friend died when I was six. She and I had measles at the same time. This was before the vaccine. I recovered, but she died. I have this memory of being in a dark room – when you had measles they kept you in a dark room – and emerging and asking, “Where’s Mary Elizabeth?” “Oh, she died.” I didn’t go to the church for the service.

I’ve always been the kind of person that, when I’m afraid of something, I don’t run away from it. I go to it. I want to figure it out, so I won’t be so afraid of it. When I graduated from college, before becoming a psychiatric nurse, I worked for a year on an oncology ward of a hospital. Patients died every day, alone, in pain, in a very sterile setting. I remember going into the med room and just crying.

“I’ve always been the kind of person that, when I’m afraid of something, I don’t run away from it. I go to it. I want to figure it out…”

Q: Did you think you’d wind up where you are now?

A: No. Never. It’s been a process. Two big things that I’ve learned in the work that I’ve been doing the past 12 years – and I’m a different person because of it, I believe that – are the value of being totally present to the moment and that life is a process. Grief is a process, and life is a process.

In a way, I feel everything has led me to this. I was a psychiatric nurse for years. One day, when I was working at St. Josephs Hospital in Yonkers, I was having a conversation with the social worker, and he said, “You know, my wife’s starting a hospice program at Phelps Hospital. Are you interested in a job there? They need a nurse.” It was pure coincidence. That year on the oncology ward was so horrible. Part of me thought I would go back to that and try to help make it better.

I interviewed and everything fell into place. It was the infancy of hospice. It was all very grassroots. It was wonderful. We relied on volunteers. We had a chaplain. We brought in visiting nurses. I learned how to work with volunteers. I learned how to work on an interdisciplinary team. It taught me a lot about starting a program. I took a break at one point to spend more time at home, but continued to work with the hospice. Then Phelps asked me back to start a bereavement program to support families of hospice patients.

We networked with other bereavement programs. One day I went to a talk at Jansen Memorial Hospice, and the chaplain approached me and asked, would you like to be a director of a new program for children and adults? They saw a need to bring bereavement work not just to people with loved ones going through hospice, but to the community at large. They felt there was a lot of unattended-to grief in the community. I thought about it long and hard. I never aspired to be a director of a non-profit, with the fund-raising and administration. But I took the job. It’s been an incredible growth process to build something from nothing.

Q: Do you have things you that you do for yourself spiritually?

A: I do yoga. Not as much as I want to, but I love it. When I get up in the morning, I have a semi-meditation to try to center myself. I get my cup of coffee and sit in my living room and try to be still for five or 10 minutes.

Q: And you get spiritual experiences in your work.

A: Absolutely. Usually every day there’s a moment – we call them moments – when we’re working with people, or working with volunteers, and you make a connection. It’s a gift.

Q: Has this work changed your relationship with death?

A: In a way, I think I’ve befriended it. I don’t want to die, but I now know I don’t have to die in pain, that I don’t have to die alone, and that millions of people have been through it. We don’t know what is on the other side, but I have faith that there is something.

Q: How do you avoid burnout?

A: I try to keep a sense of balance in my life. A stable home life has helped me a lot. It helps me turn work off when I leave here. The times that are hard are when there’s not balance. Something is happening at home and my equilibrium is off.

I have worked with incredible, amazing people with sad, sad stories. But I find that when I’m right there with them, things come into focus. It becomes clear that what a grieving person needs is someone to just sit with them and listen to them. What we do is very simple. We’re not trying to fix people. We don’t have the pressure of trying to make things better. We offer our presence. We listen and validate. We try to help people not feel so alone; there’s a healing when that happens.

“What we do is very simple. We’re not trying to fix people. We don’t have the pressure of trying to make things better. We offer our presence. We listen and validate. We try to help people not feel so alone; there’s a healing when that happens.”

I don’t think everybody can do this work, just like not everybody can be a social worker or a doctor or nurse. But those people who can do it, and do it for a long time, can have a very full life. This is work that makes you pause and appreciate what’s important. The best part is to see someone when they are so fragile and so raw, and then see them a year later and they are so different. That’s why I don’t get burned out. I see the resilience of life, that people do go on.

Writing To Heal – December 4th Stamford JCC

Looking forward to facilitating…

JConnect_October2-1-1Writing to Heal: A workshop for people who’ve suffered grief, loss, trauma, or illness Tuesday, December 4th 7:30 PM Stamford JCC, 1035 Newfield Avenue,Stamford

No previous writing experience necessary. Free and open to the community. For more information or to register for the workshop, please contact Eve Moskowitz, JFS Director of Clinical Services at 203-921-4161 ext. 122 or email at emoskowitz@ctjfs.org

OR JUST COME!!!!

                                                                 *        *       *

Shining a Light on Grief: Carole Geithner’s novel, “If Only”

Carole Geithner’s novel, “If Only”

I was honored last night to be part of a panel discussion, “Shining a Light on Grief,” with Carole Geithner, author of “If Only,” a young adult novel I thought was enchanting. I’d recommend Carole’s book to anyone, young or old. I’d especially recommend it to bereaved young people, and those who want to learn more in order to help a bereaved friend.  Some may find a novel like this more helpful than even a “how-to” book because it organically teaches what, and what not to do and say. “Showing” (as in a novel) is always more effective than “telling.” (as in a “how to”)

Carole’s a professor and social worker who works with the bereaved, and she said she wrote the book, at least in part, to help her deal with her own experience of grief.  As Bruised Muse readers know, I too wrote a novel inspired by my grief, “Saving Elijah.”  I inscribed a copy for Carole. She and I have a lot in common, it seems, both in our professional interests and in our understanding of the power of writing to heal.  (We may also have some personal things in common, since both of us are social work types married to successful businessmen. Okay, so maybe that’s a stretch, since Carole happens to be married to the US Treasury Secretary.)

Carole Geithner

Anyway, Carole is lovely and calm and knowledgeable and reassuring (all good things for a social worker), and her book is wise and accomplished and real.  It brings to life and gives voice to a believable thirteen-year-old named Corinna as she makes her way through the very difficult first year of aching loss and grief after the cancer death of her mother, Sophie.  In scene after scene, often with humor, Carole believably, enjoyably, and instructively depicts many of the situations and dilemmas you encounter after the death of someone you love. As a writer I particularly admired the scene in which Sophie is listening to a private conversation between her father and her aunt about her mother.  I was also struck by the range of experiences Carole managed to get into the book.  This includes everything from the feeling that nothing is normal and you’ve arrived on an unknown planet called Planet Grief, to the need to create new rituals, to the natural attraction to people who’ve experienced similar situations or just know how to “be with” you, to all the strange and hurtful things people say to you.

What is helpful/What isn’t

Carole has put into the novel wonderful examples of what’s helpful, which fit with my own suggestions:  Be present.  Be humble.  Be patient.  Observe. Reflect.  Give witness. Allow silence.  Don’t judge. Don’t try to fix it.  Accept.  Listen.

As for what to say, “I’m sorry” is fine, or even, “I don’t know what to say.” Some people are instinctively gifted at compassion-giving, while others need instruction.  It takes commitment and stamina to sit with the truly bereaved.

Carole also put in quite a few examples that nicely fall into the categories I’ve described for all the people who mean well but say the wrong things, including: babblers (Let’s talk on and on—about anything else); advice givers (It’s time to clean out the room…start dating again…get over it…); platitude-offerers/pain-minimizers (God must have wanted him…he’s in a better place…you did everything you could); pseudo-empathizers (I know just how you feel); lesson-learners (Everything happens for a reason…life is short…) and last and worst, abandoners.

I experienced most of these myself and I see them echoed over and over in the experience of others, so much so that at one point I was thinking of writing a book called: The Ten Worst Things to Say.  The key is: Don’t say anything that de-legitimizes whatever the bereaved might be feeling.

The evening was jointly sponsored by the Jewish Family Service, Jewish Community Center, The Den for Grieving Children, Family Centers, and the Center for Hope.  I have associations, one way or another, with all of these wonderful institutions in the community.

The audience included many professionals who work with the bereaved, and quite of few bereaved too.  I was thankful for some wonderful questions, such as this one (I’m paraphrasing):  “I understand it’s really hard to know what to say when people ask you how many children you have.”  Yes, indeed, this is always a loaded question. It’s one of the many real dilemmas of grief, particularly at first.  If someone asks how many and you leave out the dead child, you might feel as if you’re betraying that child. But if you include that dead child you might then be forced to answer the follow up questions, which might lead you (and the asker) where you might not want to go.  It’s always awful to find yourself suddenly talking about your most profound pain to a stranger who was simply making conversation, or even actually breaking down in tears in the cheese aisle.  There’s also the concern that you might ruin someone’s day.  Anyway, eventually most bereaved people figure out and make peace with how they want to handle this dilemma, which is one that’s going to be with them for the rest of life.  It’s a case by case decision.  It gets easier with time.

I hope the newly bereaved who were brave enough to come felt supported and cared for.  I admit that while I wasn’t surprised I was a bit disappointed by the lack of attendance by more non-professionals perhaps looking for information on how to help a friend. I guess I’m so comfortable with this topic, and with offering compassion to the suffering that I forget how much most people really just want to avoid it.

Here’s the link to Carole Geithner’s website, which has some great resources about grief in addition to info about the book.

McSweeney’s, Geraldo, and Trayvon

I’ve received letters from all over the world on my piece of rhetoric (otherwise known as a rant) in McSweeney’s about the misuse of the word “closure.” Some complimented my literary craft (which is nice), some came from people in the bereavement field, some from parents.   I’ll post one or two of these letters soon; meanwhile here’s the link:

http://www.mcsweeneys.net/articles/an-open-letter-to-the-radio-lady-who-said-we-should-find-closure

And speaking of “closure,” so far I haven’t heard anyone mention it in relation to the terrible death in Florida of Trayvon Martin, though no doubt some misguided soul will do so in the coming days.  Over the weekend, however, I heard Geraldo Rivera say, “the hoodie is as much responsible for Trayvon Martin’s death as Zimmerman is.”  Wow.  Similar to the “he raped her because she was dressed provocatively” defense, the argument may be a new low in an already bottom-scraping America, when someone with actual access to airwaves can get away with making an excuse like that for what really does appear to be a murder of a beautiful, unarmed seventeen year old boy walking down the street carrying some Skittles and an iced tea by an armed neighborhood watch “volunteer.”  What happened for the idea of “freedom” these same people are always crowing about? Would that be freedom for everyone except those who want to wear hoodies?

According to the LA TIMES (and many other news sources): George Zimmerman, whose fatal shooting of an unarmed teenager has sparked nationwide protests over alleged racial profiling, had thought the entire incident would “blow over,” a friend said Sunday. The story goes on to make the claim that Joe Oliver, a ten year friend of Zimmerman, make the claim that he had never seen any indication Zimmerman, 28,  is racist.  Now Zimmerman is hiding amid death threats and demands for his arrest.  I wouldn’t support death threats for anyone, but demands for his arrest? Absolutely.

“Walking while black” is a much, much better explanation for this outrageous act by Zimmerman, no matter what his friend says, and how sad for the loving parents of all the young black children in American, that they still, constantly have to worry about their children in a country that continues to be a terribly racist place, even WITH a black President.  I have sat with bereaved parents black and white; their tears and pain are exactly the same.

And here’s another important point in this matter.  It’s as difficult to even know what’s in people’s hearts, let alone to legislate what should be in their hearts.  It’s for a court to determine whether this guy is or isn’t racist, and this is or isn’t a bias crime, and yet, unbelievably, because of the so called stand-your-ground law, which took effect in Florida in 2005, police could not arrest Zimmerman.  Shame.  Shame.

Well,  we DO know this.  Research has shown that access to the means to commit deadly violence is the best possible predictor of deadly violence.  For example, if you have a gun in the house, it’s more likely that someone (usually NOT an intruder) will be shot and killed, or even that someone will commit suicide successfully.  In view of this and the proliferation of senseless shootings in this country, it seems to me that the gun lobby has become far, far too powerful, scary powerful, and that the narcissistic, gun-crazed, irresponsible climate it has promoted and created and nurtured in the last thirty years is as much responsible for the shooting of this young boy as anything.  How else can you explain the passage of a law like the stand your ground law,  which permits people to use deadly force not only inside the home but on the street if they feel threatened?  People feel threatened by all kinds of things, real and imagined.  If you put a gun in every hand, as some in the gun lobby are pushing for, there will be more blood and death than there would be if you didn’t. A Priori. Why do we keep passing legislation that makes it more likely, rather than less, that this kind of thing will happen?

What is wrong in America?

Offending the bereaved: Thoughts on the controversy around the upcoming DSM V proposed “grief guidelines”

Michael Max Dorf, a month or so before.

Who would have ever thought there could be a controversy around grief?

In the last few months, in my other (non-writing) life as a therapist, I have heard the devastating stories of several people seriously traumatized by their past contacts with the mental health system, people with a lasting legacy of pain from being (probably wrongly) prescribed powerful psychiatric drugs or placed against their will on a terrifying psych ward. I’m definitely not a conspiracy theorist, one who says things like “everything happens for a reason,” or assigns existential “meaning” to every happening, and so I’m sure it’s pure coincidence that I’ve heard so many stories like this lately. I obviously recognize that many dedicated people in the field are doing work that manages to be both life-saving and compassionate, yet these awful stories also underscore the need for folks setting the parameters in the field–the task force considering changes in the upcoming edition of the “bible” for clinicians, the Diagnostic and Statistical Manual (so-called “DSM V) to the various “diagnoses” around grief–to at least try to get it right.  It seems to me that those of us working in the field who are honored every day to do this work, to witness people’s deepest pain, have a duty to at least speak out when it appears that a grave and possibly for some folks dangerous injustice is being contemplated.

Partly because of the experience I mention above, and partly as a response to a wonderful “Open Letter to to the DSM Task Force” posted by Dr. Joanne Cacciatore on her own website (which I’m linking to here) , I’d like to add my own voice to all those professionals and offended bereaved people weighing in on this disturbing and upsetting controversy.

As readers of this blog surely know, I too lost lost a child, my son, Michael, who died in 1994, and I’ve been living with, and thinking, studying, and writing about grief ever since. (Let me assure the reader that I’ve also done lots of other things, including recover my sense of humor.)  My writing inspired by this includes a highly acclaimed novel, “Saving Elijah,”  published by Putnam in June, 2000.  After that I (eventually) went back to grad school to get a second masters degree in social work, mostly in order to work with the bereaved, even though I already knew from experience what one bereaved human being needs from another human being.  More recently I’ve been working on a kind of memoir, which I’m calling, “Excerpts: Complicated Grief.”  Included in the memoir is a recounting of the day I first heard in grad school that we were to label grief that lasts longer than two months (now according to all accounts of the upcoming DSM V apparently further reduced to two weeks) as pathology, call it “complicated,” call it a “disorder.”  Even twelve years after my son’s death, this felt like an accusation.  How could it not?  How could they not see that this is damaging to the very people it purports to “help?” It was as if feeling the terrible sorrow I had felt, sometimes even still felt (still sometimes feel now), wasn’t “normal.” Yet I knew full well that it was “normal,” both from my own experience and from talking to scores, even hundreds of other bereaved parents.

I’ve written the memoir in the second person, and it moves backward from the present to the day of the loss, in an attempt to show how grief can (while still being “normal”) reverberate throughout every corridor of a life, sometimes louder, sometimes softer, sometimes as a source of wisdom, sometimes as source of pain or anxiety, but always present.

It opens on what would have been my son’s 21st birthday.

October 22, 2011, seventeen years after. Stand at the dryer, slap in wet clothes, try to form an image of a strapping young man turning twenty-one today.  See only a sturdy toddler.   Like a failed magic trick.

Go to the cemetery, brush away leaves, place stones on the brass and marble marker. Stand in the thick, humid air.  Say Kaddish,  forget the last part.  Try to remember Michael but conjure up only bones in a tomb, shreds of boy and turtle, earthworms, fecund soil.  Say the word fecund aloud, the hard k sound rattling the teeth. Remember your husband falling into the grave. Wonder why you  come.  Get back into your car pursing your lips as if tasting something moldy. Think of old metaphors, new similes. Grief always comes alone to a child’s grave. Grief is no longer a thundering, hissing monster.  Grief is hollow now, like the blunt thud of rock on stone…….

The core problem comes in my view from the pathologizing of the normal human emotion of grief by calling it any kind of a disorder. And so whether you call it an “adjustment disorder related to bereavement,” and give it one year before you dial it up into an even more serious “disorder,” or whether it becomes “major depressive disorder” at two months, or at two weeks, seems to me secondary to the fact that it is called a disorder in the first place.

A child’s death?   At two weeks you’re still in shock. You’re just getting started at two months. Maybe. Actually, it seems to me that it would actually be “abnormal” for a parent who lost a child to not feel overwhelmed and debilitated by sorrow (and to experience many of the attendant symptoms that echo but are not the same as those for depression) at two months out, let alone two weeks out. I would venture to say this is probably true even at one year.  I remember visiting a friend of my mother’s who at age 100 was still talking about her fifteen-year-old son’s death in a car accident fifty years before as if it had happened that day. Personally, I would still call hers “normal” grief. And so the learned people figuring out the DSM seem to have had it backwards all along, and now seem to be doubling down on having it backwards.

I certainly agree that what people who have suffered loss need is (as Dr. Joanne says), human connection, caring, and compassion, or as the Lancet said: Time, Compassion, Remembrance, Empathy.  I believe it’s an insult to think that a pill could be any kind of substitute for that. I remember a good, well meaning friend wanted me to take medication, but even though I was suffering mightily, walking around in my bathrobe (not only figuratively) for three years, I somehow knew that it would do no good at all to try and mask the symptoms, because a certain amount of tears needed to be shed.  Luckily no clinician suggested medication.  I’m not sure what I would have done, given my state of mind, if one had.  The idea that we can “medicate” away the pain of grief isn’t about the bereaved, it’s about those who are uncomfortable with being witness to pain. As Rumi says,

We are pain and what cures pain, both. We are the sweet cold water and the jar that pours. I want to hold you close like a lute, so that we can cry out with loving. Would you rather throw stones at a mirror? I am your mirror and here are the stones.

In other words, the healing from the pain is in the pain.  So it is.

My favorite definition of compassion is the Buddhist one: “Willingness to be close to suffering.”  That’s what I do, what all of us who want to help do, we open our hearts to someone’s suffering.  We witness.  We don’t try to fix it.   I always say: Be present. Be humble. Be patient. Observe. Reflect. Allow silence. Don’t judge. Accept. Listen

It seems to me that this isn’t only about the pharmaceutical industry, it’s even more about the insurance industry, which seems to be in the business of not paying for whatever it can possibly get out of. (And not just in the area of grief.)  In this case the insurance industry seems to want to get out of any paying for anything other than that which has medication as the first line of treatment, and which labels grief a “mental illness,” or a “disorder” of some kind (an outcome that can stay in a person’s record forever, with terrible, terrible consequences).

It’s a sickening conundrum, it puts people who want to provide support for the bereaved who seek it in a terrible position, and of course it puts the bereaved in an even worse position.  Aren’t we trying to help them?  Surely we are. And one of the things we must do to help them is “normalize” what they’re feeling.  Yes, I wailed at the top of my lungs in a hospital room, but so would you.

As clinicians, we have the “V” bereavement code, but insurance generally doesn’t pay for treatment if you use this as a diagnosis. To receive payment from insurance, it has to be a “disorder.” And so to get insurance to cover our effort to help people make their way through grief, we are actually forced to call it some kind of disorder, even when we know it isn’t.  (This is, by the way, actually true for many situations, for example anger management.  Insurance won’t pay for people looking for help with “anger issues” unless you slap on a some kind of a “disorder” label.

Some, no doubt, will think I’m a hopeless idealist, or a radical left winger for believing that Americans, the “richest” country on earth, ought to provide universal health care that enables people to get the health care they need, no matter what their financial or job situation.  I don’t care.  I still must speak the truth as I see it.  And there simply ought to not only be health care for all, there should be some other terminology that acknowledges the debilitating nature of what I’ve called “big time grief,” and also provides coverage for people to get the proper, compassionate psychological support they need in difficult times.

All of us can be hopeful that the outcry from the grief community around this issue will, like the outcry to de-pathologize homosexuality in the 1970s, result in a de-pathologization of grief.  From a practical standpoint, under our current disaster of a health insurance system, we are required to diagnose some kind of “disorder” or there is no insurance coverage for clinical services.  In the absence of a complete rethinking of the whole system (oh, for such an outcome!; let’s just hope the misguided politicians won’t succeed in their threat to repeal the so-called “Obamacare” coverage for everyone), we can only hope that whatever happens, good clinicians (and particularly psychiatrists with their ready-meds) recognize that the DSM is at best an imperfect guide, and can tell the difference between grief and either adjustment “disorder,” or major depressive “disorder,” whatever must be recorded as a diagnosis to get coverage.

I invite you to share your grief story as a comment.

Mary’s Shared Loss Story – Tragedy no one speaks of “lingers in the air”

This story, from Mary, moved me deeply.   Everyone has losses.  A loss doesn’t have to be a death. There are many different kinds of losses.  Loss of health, or part of health, or opportunity, or innocence, or even loss of heart. All of these are losses and if we’re honest with ourselves, we know that our losses are part of who we are and who we become.  Or who we can become. I hope other readers will share as Mary has. Peace to all, Fran

I was the last person my seven-year-old sister held in her arms before she opened the screen door, grabbed my five-year-old cousin’s hand and ran across the country road to reach the barn on the other side. Screech, boom, crash, the drunk driver hit the children, killing my sister instantly and my cousin a couple of days later. I remember nothing of that day or the days that followed, how could – I was barely two. The year was 1953, my mother was pregnant with her sixth child, Carol was the third.

This tragedy has lingered in the air my entire life, not avoided but never discussed. Souvenirs were tucked away in the cedar chest and a rug, woven with fabric from her dresses, covered the piano bench. How did my parents mourn with so many children and so much hard farm work that needed tending every day? Why did I never ask?

I know four things. My parents chose not to prosecute because the driver had young children at home. An auction was organized and we moved away from the farm. According to my father there was only one question left unresolved between my parents. Was this accident part of God’s plan? And 30 years later as Doctors surrounded her bed, I held my mothers hand as she explained the reason she had a scar on her heart was not because she had suffered from Rheumatic fever but rather because she had lost a child. And still I never asked.

On grief, with “Codependent No More” author, Melody Beattie…Friends are invited to tell a story of loss

Okay, so it’s been months since I last posted, and I feel like a neglectful blog-mother, but a lot has happened that has kept me busy. Mainly, most importantly, I’ve become a grandmother! The daughter of my daughter was born on Friday evening March 5th at 9:06 PM. But I’m not writing about that today, because I need more time to process it, old-school writer that I am.

Today, I’m writing about an interview for “Bottom Line/Women’s Health” I did with a true pioneer of the self-help industry, Melody Beattie, whose book, “Codependent No More,” introduced the country and the world to the term “codependency” way back in 1986, and essentially spawned the support group movement, which has saved so many lives. (Wow! We were all wearing big hair and shoulder pads back then, and none of us had computers, let alone blogs.) Just to show the longevity of Melody’s ideas and work, I checked Amazon, and found that  “Codependent No More” ranks at #242 today. It is truly impressive and rare that more than twenty years after the book’s publication, it still enjoys that kind of sales. By way of comparison, I’ll admit that back in 2000, “Saving Elijah” got up to #730 the day after a wonderful review appeared in the Wall Street Journal, but two days later sank like a stone.

During the interview, I discovered that Melody too had lost a child, a son named Shane, so we got to talking about grief. She is developing her own website about grief, which I am linking to. I sent her a copy of my essay from the Wellness and Writing Connections Anthology, “My Son’s Name was Michael — Not Elijah,” which reflects on the process and consequences of turning my own grief into fiction.  Below, I’m posting her response to my essay. (In bold are my comments and explanatory notes)

Isn’t that the beginning of a book?  I wanted to turn the page and read more.  A lovely compliment from Melody.  In fact, I am writing a kind of memoir in essays, which will include a version of “My Son’s Name.”

It took a long, long time to develop any compassion for people who say stupid things, and I still don’t have much of it, so I teach. I teach them what to say and more importantly, what not to say (and will have a section for them on my site).

I teach them what to do.

Step by step, paragraph by paragraph, I teach them how to write a comforting letter to someone in grief.

I teach people that grieving is not a “condition” nor is it wasted time. Our personal velocity changes and we move at a different pace than many other people in the world.

And the second year is worse than the first — it does not, as people enjoy saying, “get better with time.” The longer I don’t see Shane, the more I miss him, not less.

My AA sponsor told me after funeral that I needed to write out a check for each of the people who had helped me get through the week of his death so they could take a vacation, as I had “drained them.” And it would be a nice thank-you gift. Well, I didn’t feel grateful to anyone for anything, but I did as she said — and of course, the people who received a check (for $2,000) included her.

Nobody talks about how vulnerable we are.

I had a contract too — had to pay back the advance. (Here Melody, the author of 15 books, is referring to the section of my essay that talks about losing a two book contract for “Flight” and one other novel with Dutton in 1992, after Michael got sick, when I couldn’t produce a second book.

I started crying 30 days before Shane died, and couldn’t stop — and I wasn’t a crier. My soul knew what was coming, and my grief began before he left, when our souls started to say “see you” but in a different way.

And who in the hell says we have to let go completely and forever? In what book is that written? We don’t have to let go of someone when they move away, forget about them, or stop missing them.

People comfort themselves, not the person in grief. I want to help them to learn to switch that around. Here Melody is referring to the tendency of people say things that push the grief away.  People do this because it’s hard to sit with pain, very hard, it takes stamina and real compassion. My favorite quote in this regard is a Buddhist one, “Compassion is willingness to be close to suffering.”

Your story got me going. There was a real taboo in the media about the death of children at that time. Producers, etc. didn’t want to talk about the idea that children die. The world wasn’t ready for it yet. But every year, in this country alone, 250,000 people die before they receive their allotted 70-90 years of life — die before their parents do.

And God does too make mistakes. The New York Times says that 88 percent of the people we hire for assistants steal. I think that statistic applies to people generally, and not just about stealing. I think about 9 out of every ten people we meet have the ability to love and care. In the Old Testament of the Bible, which covers both Jews and Christians, it says on the seventh day He rested. Well, I think that whoever he goes to handle things on day seven went by those same statistics, so only one in ten of his workers did a good job. The other nine made mistakes. They let our children die. That’s what I think, anyway. It’s the only way I can make sense out of something so cruel and senseless. God’s assistant’s messed up, and we (and our families) became the victims of their ineptitude. Interesting theory, this one, not one I subscribe to. I believe that if there is a God, God doesn’t intervene with individuals in day to day events.  Or, maybe I subscribe to the notion that we live our lives on earth to learn certain lessons, and my own lesson may have been related to losing one I love. Of course neither of these theories explain theodicy, or the existence of evil in a world supposedly controlled by a good God.  Events unexplainable include the Holocaust, slavery, natural disasters, terrorism, or other horrific, “evil” events of history.

I hope you keep writing.

I hope you had an affair. Because if you were touched, then you knew you were still alive, whether you wanted to be or not. Here, in her lovely, supportive way, Melody is referring to the way I open my essay, with an account of a women in my town whom I ran into at Starbucks after she’d read Saving Elijah and confused my fictional character with me, and who asked if my husband took me back after I had an affair. Quoting my essay, “I looked at her, speechless. Saving Elijah, to describe it as the aggressively sensational Putnam cover copy did, is about a woman named Dinah Galligan, who while keeping vigil over her comatose five-year-old son, Elijah, “meets a seductive spirit in the hospital corridor outside the pediatric intensive care unit, one with a startling connection to her past, who claims he can make her child well again—if she’s willing to pay the price.” Near the end of the novel Dinah has a brief, desperate affair, so the question wasn’t totally weird, but I still wanted to shake her and scream, “DINAH IS A CHARACTER, YOU IDIOT.” Luckily I was not only speechless I was paralyzed.” And then later in the essay, I say, ““The question I’m most often asked now when I confess that I lost a child AND wrote a novel inspired by the experience (depending on who asks, I might leave out one or the other of those facts) is why didn’t I write a memoir? I could have, I suppose. A carefully constructed memoir can give a reader unique access to someone else’s singular experience, possibly fostering empathy, learning, understanding, growth. But reading a memoir can also make us feel safe, even smug, in the essential “otherness” of the author’s experience. Like the millions who gawk at a celebrity’s all-too-human troubles, or hoot at bad behavior on Jerry Springer, the woman at Starbucks could think, “Well, I would NEVER have had an affair.” You wish, lady. You have no idea what you would do if your child died, let alone what I would do.”

Talking to, and receiving this response from Melody gave me an idea, which I shared with her. Expanding on the idea that everyone has a story to tell and wants to tell it, it seems to me that it would be interesting to invite people (famous and not, anonymous and not) to tell a story of personal loss and discuss how it changed them, in, say, two or three paragraphs.

Any takers out there? Write me an email at frandorf@aol.com or leave a comment and I’ll post it.