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Grief Discussion with Laurie Burke, M.S. and Clinical Psychology Student

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Jessica Elder
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Grief Discussion with Laurie Burke, M.S. and Clinical Psychology Student
Hi Everyone! Yesterday Laurie Burke, M.S. and Clinical Psychology Student from the University of Memphis joined us for a live chat room discussion on grief. Laurie will soon be posting a summary of the discussion and topics that came up. Please look for her post here on Thursday June 17th, 2010. All bereaved parents/caregivers, whether you participated in the live chat discussion or not, are welcome to post their experiences, questions, responses, etc. We look forward to hearing from you!
Laurie Burke
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Hi Everyone,
As Jessica mentioned, we had a lively and very enjoyable chat session on Tuesday evening. We discussed many topics, including the differences in grieving between partners or within families. In some cases, such variation in responding to loss can strain marriages, but it also can be a time to learn to have more compassion and understanding toward others.

That segued into a conversation on what those different grief responses might look like. As we discussed, grieving is a very individualized process, with people falling all along a continuum. I can offer specific details about this if anyone is interested.

We talked about spirituality and faith, too, both in relation to one’s 1:1 relationship with God and also one’s relationship with others in his or her spiritual community. For some, these relationships might be strengthened as a result of the loss. For some, these relationships might not be affected by the loss. And, for still others, these relationships with God and others can be severely challenged as a result of experiencing loss. We also discussed the tremendous strength that many spiritually inclined grievers gain from knowing that others are praying for them as they traverse bereavement.

Another resounding theme centered on what bereavement researchers call “continuing bonds.” Instead of “letting go” of the deceased loved one, instead of adopting the idea that you must “get over it,” the survivor reconstructs a new relationship with the deceased loved one by continuing to interact with him or her, only in a new, different way (e.g., talking with him/her, setting up a scholarship or award in his/her honor, keep up his/her Facebook page, keep his/her contact info in your cell phone). For some folks, this type of continuing bond can be very comforting.

All of these topics (or others of your choosing) are open for comment. We’d love to hear which topics you would like more information on, and/or invite you to simply leave a comment with your thoughts on anything related to grief.

Donna Beech
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It was a very lively discussion on Tuesday --- almost as lively as if we were sitting together in person!

About grieving differences between husbands and wives:
Our hospice social worker helped us realize that we must respect each other's grieving styles, and also not expect our spouse to be our 'counsellor', because he/she is feeling just as intensely as we are.  It really helped me a lot (and still does) to talk to other bereaved moms --- then and now.

The bonds that we form with other bereaved parents --- even when we have nothing else in common --- are profound.  We seem to be united by a belief that our children are together in some indescribably beautiful place, and that one day we'll be reunited.

About faith and spirituality:
This is such an individual and personal issue.
My deep faith has enabled me to believe that my son's spirit is alive and everywhere --- present with all who knew him, and perhaps with some who never knew him.
In this way, my relationship with God has always been a positive source of comfort.
I'm realizing that my anger, however, is with faith community.  The church community is, of course, mostly comprised of people who have not experienced the loss of a child, and who therefore can't understand the depths of our feelings and thoughts.  But they preach life after death..........a topic that we bereaved parents grapple with everyday.  To preach this without having the experience of losing a child, is perhaps not totally effective.  And that's why we bereaved parents need each other..........even though this journey is such an individual one.

Enough rambling!!!  Summer Solstice is almost here --- hopefully it gives us all much hope and energy!



kellysmom-Mary
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Hello all,

The chat session was great.  Two hours went by like 10 minutes.

As far as grief causing a strain on a marriage...it sure can.  However if you can make it through this by understanding that each grieves differently...yet still grieves...and respect that...your marriage can be stronger than it was before the loss.  This is the one instance I know of that you really can't lean on your spouse for support.   They can't "fix" you, they are trying to "fix" themselves somehow, go on somehow, accept the unacceptable.   Some people show it on the outside, some don't show it at all.  Many times, spouses are opposite, one grieving openly and often, the other very privately. 

As far as faith, yes that is truly a personal issue.  For me its a one on one issue with God.  The loss of my daughter has truly tested my faith, but in doing so brought me closer to Jesus.  Jesus is truly a stepping stone to God for me, as He took human form and suffered as we do.  God, well, His plans are too mysterious for me, and I have come to accept that I will never know why He took my Kelly until I leave this earth myself. 

Grief and sorrow are things that bind us together as human beings...nobody escapes them.  Its just a matter of time and circumstance.  All may not lose a child, but will lose someone close whom they treasure.  I feel more compassion for people in general than I ever did before.  I see strangers walking around in a daze and wonder whats going on in their lives at that moment.   You just never know whats hiding behind the face.  Look at us bereaved parents, we go on, we walk this earth and mostly look "fine".  But we all know the pain that comes, the sorrow, the lump in your throat, when all gets quiet in the middle of the night and the reality is there.....  our child died from a brain tumor and there is nothing we can do about it.  The next morning we wake with swollen eyes, splash our faces with water, and get up to face the world again looking just "fine".

Thank goodness for places like this website, where we can take off our masks, and really talk about what we so desperately want to talk about....our loss, our kids, our lives.  A place where we don't have to worry about upsetting anyone...we are all in the same boat.

I look forward to the next chat.

Mary
Laurie Burke
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Awww...Mary, you did such an outststanding job of explaining various aspects of your grief experince! 

I hope your post will encourage others to do exactly what you suggested: "...take off our masks, and really talk about what we so desperately want to talk about..."  Both the message board and the chat session are designed to be an open forum to express what you are going through, how you think and feel, and also a place to ask questions that might be difficult to ask elswhere.

I'm glad you enjoyed the chat session.  I did as well.  I have already learned much from those who shared.  I hope this message board will be likewise useful.  I'm excited to see where it takes us all in developing a broader understanding of grieving the loss of a child. 

~Laurie

Laurie Burke
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I love what you brought up, Donna, about not trying to be our spouse's grief therapist (or expecting that from him/her in return).   Most folks don't even need to see a therapist while they are grieving, rather, they are able to make their way through to a stable place bit by bit as time passes.  But, when you are in the thick of grieving it can be hard, and it can be tempting to try to take on roles with each other that might not be necessary or healthy. 

I'd also love to hear more of your thoughts on what it's been like to greive the loss of a child while you are surrounded by spiritually minded people who might like to help but who, perhaps, are not all that helpful. In fact, their "help" might be a hinderance instead, making your grief experience more difficult than it otherwise might have been. I could learn so much from hearing your experiences, Donna. And, I'd love to hear what others of you have to say on this topic, too.

What sorts of specific things have people said and done that have rubbed you the wrong way or have you found to be cold, abrasive, combative, cruel, thoughtless, rude, inadequate, intrusive, inappropriate, etc.  Let's talk about this not only within the realm of your spiritual community, but also in relation to others such as family members, friends, co-workers, acquaintances. 

Understanding those things that hurt or hinder us as we mourn the loss of our loved one can help us to be more compassionate ourselves to others.

Let's hear your comments!

~Laurie
kellysmom-Mary
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What sorts of specific things have people said and done that have rubbed you the wrong way or have you found to be cold, abrasive, combative, cruel, thoughtless, rude, inadequate, intrusive, inappropriate, etc. 

My brother-in-laws girlfriend at the time, now his wife, insisted on staying in the PICU room, while Kelly lay dying after we took her off life support. The girlfriend was sitting on his lap comforting him and watching us from the corner of the room.  Looking back, now, I would have told her to get out, I think I would have told him to get out too!   But at the time, my priorities were  with Kelly (as they should be).  I was so focused in on her I didn't care if the president came in.  So I spend my last hours with Kelly, whispering in her ear words of love and encouragement, and stroking her beautiful unconscious face until she took her last breath.  It was a very powerful moment....as Kelly's mom I was there when she was born into this world and I was there when she left it.  Immediately after she died, the girlfriend comes up, puts her arms around me, looks at a lifeless 12 year old Kelly and says "She never looked more beautiful in her whole life."  It was so absurd it actually struck me funny.  I half expected Kelly to sit up and say in her 12 year old preteen voice "DUH, I just died.  This is the best I ever looked in my whole life?"  I never thought it was cruel, I just thought it was dumb.  It was one of many dumb things this girlfriend did.  The girlfriend also got drunk at Kelly's funeral luncheon and started an argument with the brother in laws' ex wife.  Needless to say, my brother in law is an idiot too and now they are married! (which by the way, they married 2 weeks after Kelly's death).  The girlfriend also sent out a letter to everyone invited to their wedding, including us,  with Kelly's picture on it, explaining that they "lost their girl" and were "devastated", explaining that Kelly taught them that their love was "from God" and they should go on with their wedding.  (second marriage for both, they both cheated on their spouses with eachother).  Never once, in that stupid letter, did it mention me or my husband or Kelly's little sister.  Only them.  If they only knew, like I did, how Kelly felt about their relationship(she disapproved)!  That letter made me MAD.  If you had read this letter you would have thought it was their daughter and that they were in the ICU 24-7.  Ugh!  This chick had only met Kelly a few times briefly. 

Other parents have said to me  "Mary, you are so strong, I don't know how you do it.  I could never do it"  (meaning go on after a child's death).     A few times I have responded, saying "yes you would do it, you would have no choice.  You have surviving children you are responsible for, how can you not?  It would not be fair to them. Do you love them any less than the child you lost?  I think not."  This usually shuts them up.  I realize though, that they don't mean any harm, they are just afraid....afraid that what happened to us could happen to them.  Two years before I lost Kelly, Kelly's best friend died in a tragic car accident at 10 years old.  I remember thinking the very same thing (I couldn't do it, I couldn't go on if I lost one of my kids).  Just lucky I never said it to the mother.

I could go on with more stories but you get the idea.

Tolerance is the key to getting through this stuff.  Mostly, people don't realize what they say.  They stumble over their words and feel uncomfortable.  Some, like my idiot now sister-in-law, are wrapped up in their own drama, and just say dumb stuff.  You have to count you blessings, no matter how small, and I am blessed that my idiot brother and sister-in-law live in a different state!!

Truthfully, I would rather have someone say something wrong, than not say anything at all.  One "friend" was so uncomfortable around me after Kelly died, we just lost touch.  I tried to talk to her, telling her I was okay talking about Kelly, then talking about other usual daily life stuff and her kids.  But she just stayed uncomfortable, she could hardly hold a conversation.  I let her off the hook and the friendship drifted.  I still see her here and there, but its small talk. 
kellysmom-Mary
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I'd also love to hear more of your thoughts on what it's been like to greive the loss of a child while you are surrounded by spiritually minded people who might like to help but who, perhaps, are not all that helpful

In the PICU, the hospital chaplain, came in and wanted to pray over Kelly (Kelly was unconcious on life support).  So she was on one side and I on the other.  After she said a prayer, she then said "So how BIG was the tumor?"  I had to shush her, she was standing right over Kelly and I didn't want Kelly to hear her.  At that time we were still hoping, praying and watching for any sign of recovery.  That particular chaplain was annoying, always talking and asking lots of questions.  We had already told her we had our own pastor and church, but still she insisted on coming in all the time to "help" us.  She was intrusive.  She must do that often, because the nurses came in and volunteered to put a sign up saying "all visitors and staff, must report to the nursing staff before entering this room".  We were too nice, too tolerant of her, maybe because we were in such a state of shock from the suddeness of Kelly's illness.

Ugh, one day at daily mass, I hear the deacon give a homily about a when he was a child he prayed to God to return his lost cat and God heard his prayer and like a miracle the cat came home.  Whoa!  It was early in my grieving.  It took all I had to sit in the pew and not leave or scream.  I wanted to yell out...."Who cares about your stupid CAT!  Where is MY miracle?  God gave you your stupid cat and took my daughter?"  Okay, well he was preaching to grammar school kids, so I get it.  But still I thought, what if my surviving 10 year old daughter had been there?  Wouldn't she think the same as me?  Would she, or other kids who lost a family member, possibly feel guilty that they hadn't prayed enough to God for him to grant their miracle? 

Our pastor was very helpful while we were in the hospital.  He came, asked how she was doing, how we were doing, said a prayer, and left.  Worked out great.  If I needed to talk he was there, if we needed space, he gave it.  Fast forward a year after Kelly's death.  I was having a really rough time with the diagnosis and death anniversary approaching.  I attended daily mass just to feel a bit closer to Jesus, God, and Kelly.  Mostly I cried on and off, but somehow it comforted me to just be in the quietness of the big church with all the seniors who have collectively lost so many loved ones.  Anyways, the pastor mistook my being at daily mass as strength, thinking I was fine, doing well.  After Sunday mass, he called me over and asked me to teach religious education classes.  I politely tried to back out with some lame excuses, but he continued to pressure me.  I finally relented and said I would "think about it".  A few days later, at a required parent meeting, the Director of Religious Education gave a plea for volunteer teachers.  After the meeting she came up to me and said "I was really talking to YOU.  Father said you would make a great teacher, so how about it?"  Well, down came my mask, and I started to cry.  I told her the truth.  The truth was how can I teach children about faith when I am questioning my own?   I told her I was angry at God, that my child should have received the sacrament of confirmation at 12 years old, not the sacrament of last rights.  I was sorry, I just couldn't do it.  The poor woman had no idea that was coming.  All she saw, and the pastor too, was an apparently strong, faithful mother who had so much faith she came to church everyday.  They didn't know what was going on in my mind and soul, behind the mask.  I was as much responsible as they were.  I didn't know when it was okay to let the mask down and when not to.  So I left it up and people who might have wanted to help me, didn't even know I needed it.  So there is a lesson.

Sorry for all my blabbing, but posting these  messages seems to be therapudic in some way.

Jessica Elder
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Thank you all for sharing your experiences and thoughts with others. I encourage you to continue sharing, and I also encourage other bereaved parents and caregivers who may be reading to comment on the posts or to share their experiences. What you said in all of your posts was so insightful and articulate. It reminds me, and others, that grieving is truly so unique, individualized and personal. People can have different views and opinions, but there still seems to be many similarities in what bereaved parents express. Hearing your thoughts is so helpful, as it reminds us of the complexities of loss, grief and bereavement.
Laurie Burke
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Your account, Mary, of the insensitives of others during crucial moments surrounding the death, the funeral, or even many months and years afterward is so vivid.  I thank you for taking the time and effort to explain it so fully. 

What you've shared (I'm especially thinking here about the deacon and his cat!!) highlights how the untimely death of a loved one really puts into perspective what's important in life.  For many, such as yourself, I think it can naturally cause us to be more sensitive to the losses of others (even if they seem trivial compared to our own losses) because we have felt such deep heart-wrenching pain.  It also, unfortunately, highlights the tremendous lack of understanding that comes to us from those who can never understand that level of hurt. 

And, you are so right!  When we go about the daily business of putting one foot in front of the other in our attempt to rebuild a life without our precious loved one (impossible as that feels) often times others think that the fact that we are not lying in the fetal position in some darkened room that we must be "all better now!"  In making things look so slick by merely engaging in the functioning world, we almost do ourselves a disservice by increasing the lack of understanding we receive from others.  In fairness, I think that it's true, others often just want us to feel better because it's uncomfortable for them to see us feeling so deeply sorrowful.  Very, very few people (as I am sure you have discovered) will walk through the deepest dark pits of grieving with another.  Why?  Because it's scary.  Loss is inevitable as long as humans attach themselves emotionally to each other, so no one is exempt.  Entering that dark hole of grieving (which is not the experience of all, but certainly of some) means that we (the griever and the supporter) will necessarily be made more vulnerable.  When others encounter your story of loss, many will naturally cower and pull away (in some socially acceptable way of course! ; )  Therefore, the road you walk can be quite lonely at times, and full of misunderstanding.  But, there are some who will walk that whole road with you--being selective in our friendships is never more important than during a difficult bereavement period.   

I'm glad that you've found writing about this to be beneficial for you.  Your thoughts are incredibly enlightning to me and, I'm sure, to others.  I hope your post will encourage others to get some of this stuff off their chests, too, partly because it's therapeutic as you say, but also because it helps us all to be more compassionate to each other.

~Laurie
Laurie Burke
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Great comments, Mary!  Thank you so much for sharing some of these really difficult experiences, many of them unbelieveable, actually!  Unbelievable in that we as people can be so incredibly wrapped up in our own drama, as you said, that we can't remember the tremendous amount of pain the grieving family is experiencing. 

I'd be very interested in your assessment of whether having to endure these negative social interactions (listed in this post and your other one) made your grieving more difficult for you.  Do you think it would have been easier for you to maneuver through your loss if you had been spared from the layers of nonsense that were added to your plate?

I'm also very interested in your final comment: "Truthfully, I would rather have someone say something wrong, than not say anything at all."  Ah yes....and that's what studies have also shown--that grievers are often most offended when others act as if nothing happened, don't even ask about the loss, or avoid mentioning the name of the deceased.  In actual fact, it seems that grievers very much want you to talk about their loved one who died, mentioning them by name.  In this way, it shows that the deceased person was important to that person, that his/her life had value, and that the other person's life has been altered by the loss, as well.  Grievers often feel very blessed by such encounters.  The most painful thing is when we think that life for others can actually carry on as normal in the absence of our precious loved one.  For us, it simply cannot!  When we realize that others are still affected by the absence of our loved one, it validates our own grief response and helps us to feel supported as we attempt to move forward without that person. 

We as a society have so much to learn about how to support people following loss. But, we as grievers might also bear some of the responsibility in learning how to convey to would-be supporters what we really need, and what's not helpful.  One way to do that is to openly use our loved one's name, and reviving his or her memory whenever we feel comfortable doing so, which might open the door for others to follow suit.  Often others are taking their cues from us. 

Let's talk more about that here and learn together what cues we should be giving others as they try to support us.

~Laurie

kellysmom-Mary
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I'd be very interested in your assessment of whether having to endure these negative social interactions (listed in this post and your other one) made your grieving more difficult for you.  Do you think it would have been easier for you to maneuver through your loss if you had been spared from the layers of nonsense that were added to your plate?

No, I don't think so.  The grief over losing my daughter Kelly so suddenly was so HUGE, so profound, that these "negative social interactions" seemed piddly, almost ridiculous.  I envied people who had mundane problems...and everything seemed mundane compared to what I had to accept....death, its so final.  Other peoples problems could be solved/worked on, but mine was a done deal...all there was to do was grieve and find a way to go on (a monumental task). I restrained from saying anything to my brother/sister-in-law because I thought I would give them the full force of my grief anger, an inproportionate amount that was due them.  It would have been a great release, to blast them, and get out all my anger (most from losing Kelly), but then it would have damaged our relationship with them and put a hole in the family forever.  That wasn't worth it and I'm glad I didnt' do it.  

Donna Beech
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Hi, Everyone,  I wanted to respond sooner.........no time.

Mary raised so many important points that I (and probably all bereaved parents) can relate to:

~ Miracles:  I haven't figured out how to respond to this one yet.  I've never believed that God has a checklist of who receives miracles and who doesn't.  So, again, my anger is not toward God but toward institutions who uphold miracles, because this seems to imply that some people deserve them and some don't.  In my eulogy at my son's funeral I referred to the 'miracle of the outpouring of incredible love from so many people'.  But when people refer to 'miracle' as a child living ---- that still is a tough one for me, and continues to keep me at an emotional/psychological distance (from church communities).

~ About 'being too nice':  Mary, I don't think we were being 'too nice' when we didn't respond to people's insensitivities during our children's illnesses/dying.  We were simply staying focused on what was really important at those times.  However, some insensitivities were so outrageous that they unfortunately did register somewhere in our minds (Your description of "idiot-now-sister-in-law" says it all!!  And I'm so sorry about that stupid scenario that you had/have to endure). 
I try to forget those incidents.............sometimes I'm successful at that, and sometimes I'm not.  I unfortunately still remember the time when my brother and his adult children had a loud family gathering here at our house while my son was on hospice, and no one could hear my husband calling for help when Jonathan was having one of his seizures..........And that first Father's Day weekend at mass, when a lady told off my bald 11-yr.-old son for wearing a hat in church........Etc...

~ Being asked to be a religious ed teacher:  We bereaved parents do have a strong faith in order to get through as well (?) as we do, and I really wish that people would listen to us and our perspective.  But, on the other hand, who among us wants to continually expose our broken hearts in order to demonstrate our strong faith to people whose greatest loss is a cat???!

~ Going to mass to feel closer to God:  Within a year of my son's death, going to mass somehow became a source of anger and alienation, so I stopped going except when I was scheduled to play organ (about once a month); I just stuck to the Presbyterian church where I'm employed as music director, focusing on doing my job.  Now, three years later, I would like to integrate my life-and-death experience with the faith that I grew up with, but no priest seems overly willing to address that with me.  Could be related to my upholding embryonic stem cell research during the time that my son was failing one clinical trial after another (and I apologize if this stand offends any readers), trying to explain to clergy that perhaps this might turn out to be some children's only hope...........one priest indirectly labeled me 'intrinsically evil'; another would not grant my request for an appointment to talk to him...........and so on.

Yes, these past insensitivities make healing much more difficult.  I've had to turn away from them and look elsewhere in order to heal.  And, yes, I've found many beautiful people who are strong, willing, and compassionate enough to help ........... including you dear people!!  And some days I really do great, and some days I don't!

Thanks for reading...........and Peace!
Jessica Elder
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Donna,
I can understand why you feel the way you do about miracles. Many people question this and struggle with how to perceive death (and survival), and the reason for death when it happens too early. Although each person may feel differently, I think your explanation of your anger and where it is directed makes much sense and will be comforting to others who have had similar experiences.  While some people explain having a positive experience with their church community, others have examples like you do.  It is so sad to hear that you had these experiences as you were probably expecting your community to play a positive role in your healing. It sounds like you have come up with a way to maintain your faith and your relationship with God, and I am glad that you have found a way to do this as it has been part of your healing process. I am so sorry to hear that you had to endure the negative experiences you mentioned, but I am glad you are confident about your beliefs and have the ability keep faith in your life despite the negative experiences. I imagine it can be difficult to reach this point, as as faith, religion and life itself are often confusing. I am so happy to hear you have found compassionate people to listen to YOU and your experiences. Thanks again for sharing.
Jessica Elder
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Mary,
What you said about everyday problems, versus your loss, is so true. It is something so many people do not understand, or realize. I have heard man bereaved parents state that they feel as if they are living in a different world because their perceptions and opinions are unique and cannot be fully understood by others who have not shared their loss. They said they could not perceive the world as others do once experiencing the loss of their child. Reading these posts always reminds me of the importance of bereaved parents finding each other. Thanks for sharing.
Laurie Burke
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Hey Donna,
Thanks for what you wrote. I wanted to respond to a couple of things you shared especially related to your comments about miracles. Like you, I have often been puzzled when I hear people talk about healing, especially in relation to terminal illnesses. I guess I feel unsure about what constitutes "healing." For some, it might be a total vanishing of the tumor or complete remission from the disease, but to others it actually might be dying and being free from pain and suffering. To others, it might be something in between. It seems like "healing" and "miracles" are catch-all phrases that are often used to encompass more than they should, sometimes leaving folks feeling confused rather than comforted because the outcomes of praying for healing (or even medically healing) can be so varied.

You also relayed ways in which you didn't respond to insensitive others--which I think is surely necessary at times but also an interesting tactic as a means of coping. I'm wondering if you have specific ideas about how a person who's grieving might respond in constructive ways in order to gently show people methods of being more aware and sensitive of the bereaved.

And, finally, I'd like to hear from you and others about what you would find helpful as you grieve. What would you tell others you need right now? Or, at different points along the way--do various time periods require different types of social support? Think of it as an actual conversation--how would you convey your needs to the various people in your life from whom you derive that sense of support that is often so crucial during bereavement. How would you convey it to co-workers or acquaintances? In what ways does it matter the type of relationship you have with the person, and to whom is it easier to convey your needs?

~Laurie

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