- What is the most important thing you learned from your experiences? The most important perspective I've learned from grief is the importance of continuing to live. You need to keep living during the experience of loss and the aftermath. While you need to live in the present with your grief, it is essential not to become mired in grief. The key to healing and survival is to keep living. While bad things happen (be it the loss of a job or an important client or any other disaster) bad things are not your identity.
. - Anything that really worked for you or your family? It really helped my wife to go back to school and to obtain a second degree (BSRN). I'm still planning on a PhD with a goal of teaching graduate level dispute resolution classes or mediation, but there are always adjustments. Our child Robin's death on August 31, 1997 has really made for some changes in our lives.
. - How did reality differ from what you read about grief? It is one thing to read that the death of a child causes years of substantial to "mild" disability and another to live through it. Not only do you need to make adjustments to protect your clients, you need to appreciate that those adjustments will result in a significant loss in earning capacity. My experience was that I lost about 50% of my gross income for the two years following the death of a child -- remember, you not only are able to do less work, you are also less able to obtain work for the future.
. - What was harder than you expected? One of the hardest tasks in grief is to give comfort and care to those who are overcome and in need of help because of how they are affected by what has happened to you. It is hard to be prepared for people who feel a need to have you (and no other) console them when you are without consolation yourself. [e.g.] I also found it hard to deal patiently with people who feel obsessed with making certain that I understood that their lives were much worse than mine and that losing a child was no where near as bad as whatever problem they had gone through.
. - Would I recommend bankruptcy? Yes. Without qualification. A sudden drop in income to 40% or so of prior income, for a period of several years, coupled with significant unforeseen expense, is a terrible burden. We did not go bankrupt after the deaths of Jessica and Courtney and the experience of not going bankrupt has been one I am frankly unable to recommend to anyone else. While I would not change my own decision not to go bankrupt in the past, I do not recommend it to anyone else.
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I should note that we hired an attorney and gave in and filed for bankruptcy December of 1997 following Robin's death in August. We were just unable to avoid it any longer, though I had hoped to make it through this loss without filing.
. - What was your worst experience? The worst experience I had was my reaction to the extremely vigorous efforts made by the transplant doctors to bill my family for being a donor family. I would stress that I believe in organ donation and transplant technology and that thing that disconcerted me was the anger I felt rather than the mistaken billing efforts. They were so aggressive and they wasted so much (by the time they were finished with Courtney, they used only her kidneys. Had they not been so aggressive about running unnecessary and profitable tests and had they not delayed so long, her heart, liver and lungs would also have been able to benefit another child).
. - So, doesn't your story end with a "happy ever after?" Win and I have had two beautiful children not mentioned in the article. One is the middle child between Jessica and Courtney. The other was born on July 6, 1997 with a heart problem and was operated on successfully July 11, 1997. She died in her sleep August 31, 1997. I woke up to feed her and change her diaper and found her dead -- the single worst experience I have ever had in my life. For months after that, when Win worked a Saturday night at the hospital, Sunday morning I would wake up alone with flashbacks to Robin's death.
.. - Are there any differences caused by multiple losses? Several.
.- Extreme grief often brings a fierce clarity of emotion. The overlapping of Courtney and Jessica's deaths resulted in a blurred muddying of emotion and feeling. The multiple losses have tangled everything. If extreme losses happen close together, the grief process for them merges. If they happen far enough apart, the process repeats. But if they happen at intermediate intervals, the process is distorted and confused.
- When Jessica died, over seven hundred people attended the funeral. About three hundred were at Courtney's funeral. Robin's service had about seventy. People are exhausted by the grief of others and the repetition of tragedy reduces its impact for some and makes it unbearable for others. Consider that there was a time when automobile accidents were front page news. Now, many papers don't report them at all. Any repeated disaster has the same impact.
- We have gone from being human beings to being ciphers for many people. In part because we continue to help others, work on service projects, and do not ask for support ... in part because the nature of what has happened to us is outside of reason or the rational world. Three separate, unrelated, and unlikely deaths is really too much for rational thought. [3]
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- Anything else you would stress to those in grief? Yes. Do not believe anyone who offers to help or who expresses concern. I am personally somewhat reticent and also have excellent friends -- so this comment comes from observation more than experience. But, watching our chapter of Compassionate Friends (a mutual support group of people who have lost children) I have been struck by how routine it is for someone to offer support, to act like they care, or to express an interest -- but to have absolutely no interest in anything past making the gesture.
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Basically, people want to feel like they have done something. However, making an offer of help or concern exhausts all of their desire. As a result you will get messages like "How are things today? Is there anything I can do? Please know of the high regard I have for you and your family and my willingness to be of assistance." If you make the mistake of calling or responding, all you will get is silence in return.
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One other point. Be extremely leery of any request for your perspective or for you to write for a group (speaking is not a problem). The emotional drain and stress is extremely deep and you will find that editors will find it difficult to finally use whatever you produce for them (even if all they are asking for is the right to reprint something you've written). I've published in excess of two hundred articles on a very wide selection of topics. All of my writing added together does not match the stress and drain that the editors of the two grief articles I wrote caused me. [4]
. - Stephen R. Marsh
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Footnotes
[1] Two recent examples on this point, that occurred within a week of Robin's death.
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- My wife was called up and asked to go walking by a friend. For an hour and a half she listened to the friend discuss how terrible the friend's life was. Why a child she knew had died (our baby Robin), another child her daughter played with four years ago had died (a local doctor's daughter drowned), and her daughter was getting divorced. How could her life get any worse?
- Another friend called up to discuss how devastating and terrible the recent death of someone else's child was to her and her friends. The basic message was: your child's death may have been bad for you, but the death of this other child is devastating because it happened to someone in "the important" community. Fifteen minutes of this sort of venting went on.
[2] A good website for insight on what to say and do (and what not to say or do) to those who have lost children is found at: Mothers in Sympathy and Support (http://pw2.netcom.com/~jcaccia/miss.html). They provide an excellent list of the good, the bad and the ugly. See also Compassionate Friends Home Page (http://www.jjt.com/~tcf_national/), which has everything on-line.
[3] Two things. First, I should note that my family has been extremely lucky to have many good friends and a great deal of community support compared to other parents I know who have suffered multiple losses. I am extremely grateful for my family and my community. Second, I can't blame people for finding the cumulative tragedy too much to think about rationally. The deaths are too much for me, how can I blame anyone else for having the same reaction as I have had?
[4] Both of the articles were written by request for specific deadlines. The one saw print over a year after the initial date it was supposed to be published. You relive everything when you write about it. There is catharsis in having the product in print, but until publication there is inordinate stress caused by each delay. Just be aware that editors will have difficulty with grief related writing. I should note that in each case, the final editors involved were prompt, polite and supportive. But, the gap between initial contact to final editor had some really rocky issues.
Afterwards -- Comments on two common areas of concern or curiosity.
Money. When Jessica died we asked people not to give us any money. When Courtney died we were willing to accept help with the funeral plots (we still had not been able to afford a headstone for Jessica at that time or to buy an additional plot for Courtney). With Robin's death, we have again asked people not to give us money. While I'm more than capable of spending money (and I'm always grateful for it), there are people who need financial help a great deal more than I do. If you feel like making a donation or helping someone, there are countless people in greater financial need than we are, who will be extremely grateful. Our local Hospice and Womens Shelter were both grateful for the medical supplies, diapers, toys and other things we were able to donate when we no longer needed them for our home. We will have the money for Robin's headstone some day. Earning it myself is a significant step on the road to healing.
The Future. Well, we finally no longer have people demanding to know when we are going to have another child to "make everything all right." Bless their hearts. We still do have people who wonder what we plan to do with the future. Win has about twenty-five hundred hours of practical experience left before she can begin a Nurse Anesthetist program. I still plan to continue to publish on, and to work towards teaching mediation, negotiation and dispute resolution at a graduate level though there have been dramatic changes in the field during the five years I've lost from the deaths. It may be time for another goal. I still make plans, I still work towards making them come together. It is part of remaining as one of the living.
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