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Published 58 Texas Law Journal 808 (1995)
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Surviving Loss
Introduction. Taking time for my children has always been important. At least once a week I would make certain to drive my oldest daugh- ter to first grade. She would give me a hug, a kiss on the nose, another hug and then run off to class, stopping briefly to wave before she disappeared into the school. With a drop off time of 8:15 and an office that opened later, those drives gave me a chance to let Jessica know that she came first and to start my day with putting family first. Later, as our baby Courtney started to be a toddler, I would get up with her when she awoke in the early mornings and she and I would sit down on the floor and read the morning paper togeth- er. That let her tired mother get a little more sleep and gave me a time each morning where I could put my child and family first. "The best part of waking up ... " I was asked to write this article to share how my wife and I coped with the unexpected and unrelated deaths of Jessica[1] and Courtney[2] and what we have done to help our surviving daughter. It is hoped that this might help others who find themselves in the circumstances of losing a child or other loved one.[3] [4] What to Expect Grief. All significant loss results in grief. If you've lost a grandparent, a pet, a job, or had to move, you have experienced loss and grief and the associated stress. For "normal" stress your mind automatically responds in whatever pattern you use to deal with stress. For some people that means jogging, for some it means swearing, for some, time with a good book or the television. Everyone has coping mechanisms that are used to deal with "normal" stress.[5] However, when a person experiences extraordinary stress, the normal coping mechanisms are not enough. As a result, when a person experiences a loss beyond the normal stresses and con- flicts of life, they subconsciously begin to cycle through vari- ous methods of coping, trying to find one that works better. This happens to everyone who experiences extraordinary stress. The not necessarily rational logic used by your subcon- scious is: "I have to try something new, after all, if the normal method worked, the stress would be gone." Half of dealing with grief is recognizing this cycling process (which occurs over and over again) and working through the disruption and pain that accompanies it. The other half consists of enduring pain. While it is extreme, deep and force- ful, and while it never completely heals, you can learn to cope with the pain that grief provides. Incapacity. In addition to being painful, severe loss is incapacitating. For example, the period of substantial incapacity normally lasts one to three years when a child dies, nine to fifteen months for a miscarriage.[6] Often losing a job results in substantial inca- pacity for three to twelve months. Because a substantial portion of incapacity is the loss of mental function, a person who has lost a child often is not able to properly gauge the depth or level of their incapacity. Many people report that immediately following their loss, they lost the ability to stand, talk and think at the same time. The mental effort required to keep their balance took more than they had. At the same time, they were unaware of suffering from any incapacity, only looking back did they realize just how impaired they had been. Unfortuantely, in addition to reduced mental function [7] greater financial obligations usually accompany loss.[8] Thus the demands on your ability increase as your ability decreases. Coping and Catastrophic Change By nature, everyone has multiple ways to cope with any problem. While everyone has heard of the "Flight or Fight" alter- natives, there are actually about nine methods of coping used by people, each with a typical type of action and an associated mental state. 1. Attack. When faced with a problem, one may attack it. The action for this pattern is fighting and the emotion is anger. Anyone who reacts to challenge and problems with anger is focused on this pattern of resolving conflicts and problems.[9] 2. Fleeing. When faced with a problem, a person can run away from it. The action is flight, and the emotional state is fear. Many people run from their problems.[10] 3. Denial. The action is to ignore the problem and the emotional state is dullness.[11] 4. Dithering. The action associated with dithering is random response and the emotional state is confusion. Dithering is also referred to in the literature as distracting.[12] 5. Co-option. The action associated with co-opting prob- lems is cooperation.[13] The general act is trying to reach a participatory and collective action[14] and the emotional state is a cooperative one. 6. Analysis. This response to stress or problems is to attempt to think through and understand the problem. The emo- tional state is usually curiosity. 7. Action. This response is somewhat of the opposite to Analysis. It is "doing something, anything" and in many ways is an active form of dithering. The emotional state is one of extreme intentness.[15] 8. Appeasement. The general act is to just give in and the general emotional state is guilt. 9. Anguish. This response is to give up and the emotional state is one of despair.[16] [17] Whenever there is catastrophic change and pain, the mind treats the pain as a signal that the current methods of coping need to be changed. The subconscious treats the pain as proof that the current method has failed and forces a person to begin to try the methods over and over again until the pain decreases and something is found that "works." Persons who have catastrophic loss will experience all of the above states and methods over and over again in their lives, almost randomly, until the pain decreases. Thus, if a person were assaulted and robbed in a parking lot, they would feel anger, confusion, guilt and a desire to do something (or nothing) over and over again until the pain had healed. The emotions and states would be applied to everything in life, not just parking lots and banks. A person who loses a child will suffer through this cycle for at least a year and usually for three to five years. If they are moved off track in their healing they can become stuck in a mode for five to ten years or even for life.[18] One of the worst things outsiders can do is pressure grieving parents not to resolve a mode or to attempt to force them to stick in one. Steps and Cycles It is important to understand that these steps associated with grief and mourning can afflict everyone, not just those with "serious" losses.[19] While these steps are caused by the constant cycling of coping mechanisms, these steps occur, to some extent, in every life when loss occurs. While few lose children, many lose jobs, friends and other hopes, and experience portions of the same steps.[20] Beware of Offensive Behavior Unfortunately, either through ignorance or self-centeredness and pettiness [21] there are people who say things that actively harm people who are grieving.[22] Some examples of those comments are provided below for perspective.[23] "It could have been worse." That is always true. It is by no means consoling. Going to an analogy, that a mugger only put out one of your eyes instead of both is little consolation that you lost an eye. "Your child is in a better place." Yes, and the person who has lost an eye in an accident can say that too. The problem in grief is not that the loss is permanent, but that the pain is severe and continuing.[24] "Think of all the money you will save!" Yes, and if you lost your sight and couldn't drive, think of all the money you would save. "God's wake up call for your sins."[25] Then the person making the statement should not mind a similar wake up call? Of course such a statement insists that Christ was the most sinful of all.[26] "You just need to work harder and take your mind off of it." Most parents who have lost a child operate at about 10% to 15% of their normal capacity for at least six months. Suggesting that the person "do more" when they can actually do 85% less is in- sisting that the person do things that gratify the demander -- often at the expense of whatever energy the person has to care for their family and remaining loved ones. "Come back in six months when we have more time to help."[27] "I understand, I had a hangnail once."[28] Coping When a Child Dies In spite of it all, it is possible to cope. You, your family and others can all do things that will help you make it through the loss of a child (or other significant loss) in shape to make a better tomorrow and able to care for those who remain. Always remember, those who remain need you as much as those who died.[29] For Outsiders. 1. Express sympathy and feel free to express that you do not know what to say. The statement "I'm so sorry, I don't know what to say, but I want you to know that I am so sorry and I wish I could do more. We are praying for you and thinking of you." is just fine. It is truthful, honest and direct, doing no harm. Those who told my family (and the other families we have met who also lost children) "I'm so sorry, I don't know what to say, but I want you to know that I am so sorry" -- those people do not know just how much good they did. 2. Anticipate, with patience, inappropriate behavior and emotions. When a person acts inappropriately[30] because of stress, it does little good to increase the stress by attacking the person under stress. 3. Often, especially if the financial strain has been severe and funds are being collected, it is wise to provide support and help in managing donated funds.[31] 4. Do not ignore all references to the dead child. They are dead, not erased. Letting a grieving family discuss their child -- at their own time and pace -- often helps a great deal. 5. At the family members' own pace, allow them to partici- pate in social activities and church callings. It is generally best to continue family members involvement in various positions and to support them in their weakness, rather than releasing them from everything -- to the extent that the organization has the ability to allow such a course of action.[32] It is important for those who lose children to keep on and to not give into despair. Being involved in life, social activi- ties and church helps that healing process as long as those well wishers do not overwhelm the grieving parent.[33] 6. Finally, realize that the need for patience and resolv- ing grief are both long term processes. If you can't help, at least do not try to rush. The pain will not be over in a week, not three to five weeks, not three to five months. The recovery will not even be stable until three to five years.[34] Since the two most common results of attempting to rush recovery are (1) increased stress and (2) locking the person in at a stage of grief (usually denial), rushing grief is often the most harmful thing someone can do to a grieving parent.[35] For Family Members. Nothing cures the pain. Some things help a little. 1. Compassionate Friends and other grief support groups exist and can help. Being with those who have been through the same pain and loss can really make a difference -- often all the difference in the world. 2. Keep moving. If you stop, everything stops with you. You have living children and family as well as those who have died. It may seem impossible, but the sooner you can return to some semblance of work (even at reduced hours), the sooner your mind will start to focus on healing. I literally owe my life to the kindness of the judges and attorneys with whom I interacted in the months following the deaths of my daughters. 3. Reduce stress. Keep a journal,[36] pray,[37] and get mild aerobic exercise.[38] 4. Find safe places to express your rage, fear, pain, hurt, rejection and confusion. You will have all of those emo- tions, with great intensity. It will be difficult to express them in an "appropriate" way and it is best to find a safe, private place to express your emotions. 5. Provide safe places for other family members to express their rage, fear, pain, hurt, rejection and confusion.[39] Protect those you love. 6. Be careful about becoming bitter.[40] 7. Turn towards those you love, rather than away. This is a key to those relationships that survive significant loss. The people in them turn towards each other rather than inwards when placed under stress. You can change the odds from 95% against you to 95% in your favor by controlling this one factor -- a factor that is a matter of personal choice and one you can con- trol. Conclusion The death of a child is a terrible loss that destroys many families. Often the fate of a family or some of its members hangs by a thread. By loving and understanding, by the pure knowledge of God, without hypocrisy and without guile, families can be supported in their pain and aided on the path to healing. It is my hope that this essay will help those who have lost children and those who are close to them. If I can help anyone who has lost a child, or answer questions about this essay, please feel free to call me or to write. Partial Bibliography[41] Go to top of page. Dobson, James When God Doesn't Make Sense, (Tyndale House Pub- lishers, Inc. 1993). Eadie, Bettie Embraced by the Light, (Gold Leaf Press 1992), everyone will give you a copy. Elgin, Suzette The Last Word on The Gentle Art of Verbal Self Defense, (Prentice Hall 1989)42 Heavilin, Marilyn Roses in December, (Thomas Nelson, Inc. 1993), an excellent book for clients. Marilyn is available on line @ Prodigy.com // Medical BBS // Grief/Death. James & Cherry The Grief Recovery Handbook, (Harper & Row 1988). Johnson, Barbara Pain is Inevitable but Misery is Optional, (Ward Publishing 1990). Johnson, Sherry After a Child Dies: Counseling Bereaved Fa- milies, (Springer Publishing Company 1987). Maxwell, Neal All These Things, (Deseret Book 1979). Maxwell, Neal Not My Will, But Thine, (Bookcraft 1988). Nibley, Hugh If There Must Needs Be Offense, (FARMS 1971). O'Connor, Nancy Letting Go With Love: The Grieving Process, (La Mariposa Press 1984). Rando, Therese [editor] Parental Loss of a Child, (Research Press Company 1986), Clinical essays. Sanford, Doris It Must Hurt A Lot, (Multnomah Press 1986), a children's book good enough I bought a copy for my child. Schillf, Harriett The Bereaved Parent, (Crown Publishers 1977). Taylor, Connie Before Birth, Beyond Death, (Horizon Publishers 1987), children's book. Tittensor, John Year One, A Record, (Penguin 1984), A typical journal type book.43 Westberg, Granger Good Grief (Fortress Press 1971), Elegant, in 64 pages. Biography Stephen R. Marsh is an attorney practicing in Wichita County, Texas. Endnotes Go to top of page (1) Jessica died January 26, 1993 from Adult Respiratory Dis- tress Syndrome (ARDS -- the same thing that resulted in all the Hantavirus deaths). While ARDS has over a hundred known differ- ent causes, and while Jessica spent a month in ICU units, the better part of that time in Dallas Childrens Medical Center's ECMO unit (the best center for ARDS treatment for children in the United States), the best guess her lead physician had for the cause of her death was "extreme bad luck." (2) Courtney died on December 26, 1993. On the 21st she had a complete check-up and was in perfect health. We had kept her home from Church on the 19th for fear she might get the flu and she came down with it anyway on the 22nd. On the 25th we took her in to a hospital because she seemed a little listless. She was diagnosed as a new diabetic. While in the intensive care unit, she had a seizure which herniated her brain stem. She was pronounced brain-dead on December 26th at the UCLA PICU. (3) I have taken the liberty of drawing on the experiences of the Compassionate Friends support group in Wichita Falls and of many friends and clients in writing this article. In addition, I have read a substantial body of literature, most of it badly written, on the subject. (For more information about a Compassionate Friends support group call 708-990-0010 or fax 708-990-0246). (4) I must also note that I and my family would not have made it but for the incredibly kind and careful help of the local commun- ity. It is impossible to adequately express just how much of a difference they made and the extent to which so many people helped. (5) Some methods are socially acceptable, some are not. For example, alcoholism as a response to stress is considered normal in some cultures and recognized as self-destructive in ours. Over eating is often a response to stress, as is excessive anger and hostility. Improving and training stress responses is often a part of "lifestyle" enrichment and professional fulfillment classes and is an important part of life. (6) Cf Learning About Grief from Normal Families: SIDS, Still- birth, and Miscarriage, Journal of Marital and Family Therapy, 1991, Vol. 17, No. 3, 215. Compassionate Friends also has sub- stantial material on loss. For many families the second and third years are the worst. See Sherry E. Johnson, After a Child Dies. Counseling Bereaved Families (Springer Publishing Company, Inc.) at 138ff. (7) Including clinical shock. cf After a Child Dies. Counsel- ing Bereaved Families at 75-77. (8) While we had good insurance coverage, Jessica's medical bills exceeded $614,000.00. Deductibles, co-payments, uncovered expenses and similar matters left us with substantial debts. That experience seems to be true of every parent I have met that has lost a child. In a self-employed situation, the expense is heightened by the fact that when one works less, due to incapacity, one earns less. The combination of increased expense, reduced income, and a spouse sharing incapacity generally leads to increased stress past the initial event. (9) Anger can be appropriate, it is just dangerous and easy to misuse. Cf After a Child Dies. Counseling Bereaved Parents at 77- 78. (10) Sometimes there is nothing that can be done except to run. However, fleeing is usually an option of limited utility. (11) Denial is one of the American culture's favorite methods of coping with problems. Denial is not all bad as it is true that many problems will go away if ignored. (12) See Suzette Haden Elgin's Gentle Art of Verbal Self Defense series for more on distracting as a mode of talking and coping. Along with blaming and placating, distracting is one of the three most common modes of verbal violence. (13) According to Gerald Williams at the BYU law school, as many as 60% of all attorneys use this mode -- and very effectively. Building a consensus and moving as a group is very seductive. It is why so many follow bad examples. (14) One could consider this herd action. (15) When someone jumps in and starts cleaning the house when the bills are due and there is no money, they are a prime example of this form of coping. When in doubt, do something useful is the motto of someone who takes this approach. (16) This method works for animals in the wild. About 10% of the itme an animal is cornered by a predator, if it just gives up in despair, the hunter will move on. The method does not work well when the house is being for- closed or the automobile repossessed, but the instinctive re- sponse remains. Many who lose children can retreat into a state of inactive despair for years -- a parent retreating to their bedrooms for ten or more years, and refusing to come out except to eat -- such cases are well known and documented in clinical literature. (17) It is often paired with suicidal impulses. (18) This is one of the things clinicians deal with. After a Child Dies. Counseling Bereaved Parents. at 58. See also 130- 137 about the extreme pathologies caused by having "replacement" children. (19) For more on recognizing and dealing with the same feelings and urges on the loss of a job, a move, or similar unresolved griefs in life see Good Grief, by Granger E. Westberg an excel- lent, though simple work on grieving. It has gone through multiple editions and is a slow, but best seller among those who have known grief. See also Letting Go With Love; The Grieving Process by Nancy O'Conner (La Mariposa Press) which is endorsed by Kubler-Ross. (20) For a rather long series of notes and analysis of multiple specific different types of loss and grief, see Parental Loss of a Child, Therese A. Rando (Editor) (Research Press Company) from 121 to 290. (21) For a book devoted to discussing many similar things, see James Dobson's When God Doesn't Make Sense. See also The Grief Recovery Handbook by James & Cherry (Harper & Row) at pages 30 and 34 for a more clinician oriented set of lists. (22) Which describes about half the world. The problem is that a self-centered person feels bothered about someone else's pain and grief and wants the grief to go away quickly and easily. Such a person will say and do things that actively harm a grieving family merely for personal convenience or relief. Christ spoke of such, warning that it was impossible but that offense would come... One of the saddest things in the world is to see some poor grieving mother being badgered by a church leader who expects a few platitudes to heal all of her pain immediately (and thus rest the church leader's mind as to any further duties or care) and who will not let the poor woman go until she admits that she is completely healed of all her pain -- and generally this abuse occurs within days of the death -- years before any meaningful healing can occur. Such a leader only insures that the man or woman badgered will avoid any call upon members of the church in the future and has unconcionable pain and pressure forced upon her in the here and now. (23) For advice to clergy, see Rando's enclyclopedic edited work, supra, at page 465ff. See also James & Cherry's The Grief Recov- ery Handbook at 40ff. (24) Note that "Jesus wept" and he knew that for Lazarus the rising from the dead was a matter of minutes, not centuries or even days. (25) "Who sinned master, that this man was born blind?" (26) "A man of sorrows and acquainted with grief." (27) My wife recently received a call from a mother who lost a child to heart failure. The mother had asked Primary Children's Hospital if she could have some information about their support group and was told to call back in six months. The majority of divorces, suicides and other disasterous events begin in the first six months. If any service or professional help organization treats you in this fashion, contact Compassionate Friends -- a group that has for members only those people who have been through what you have been through and who will not tell you to "come back after you've gone through the worst of it by yourself." (28) For an excellent collection of more trite phrases that are guaranteed to harm and not help, see Grieving, The Pain and the Promise by Deanna Edwards. Pages 147-148 are worth reading. (29) My thanks to Debbie Burroughs, who having lost a child, was good enough to remind us that healthy children need us as much as sick children and that living survivors need care and love as much as the departed. She helped us keep perspective and made certain that our surviving daughter could do better than hope or logic offered. (30) As defined by the perfect observor, of course. Seriously, the mind knows that "appropriate" behavior did not prevent the pain or the suffering and so in the process of reorganizing and seeking to deal with the pain, the subconcious puts a great deal of pressure on the mind to try "inappropriate" actions to see if they will help. The greater the pain, the greater the pressure to re- evaluate and change and try alternative methods of coping. (31) Not to be confused with meddling. However, for example, if money is being donated for grave markers, it might be wise to set up an account at the memorial company for the money to go to rather than just giving the money to a grieving parent. This takes the worry and concern away from the parent (it becomes one more thing that the parent need deal with only if they want to deal with it) and also helps the parent overcome any urge towards "inappropriate" actions. (32) No one is served by letting a grieving parent make a total mess of something. (33) See also Nancy O'Connor's Letting Go With Love; The Grieving Process at 182-185. She and Dobson both provide useful lists. The Compansionate Friends has checklists and concise, prac- tical (vs. clinical or technical) materials and lists. If you have an actual emergency, contact them first. (34) A great deal of harm is done by people who force grieving persons to cover their grief over and to bottle it up inside where it will fester and grow bitter or otherwise not heal prop- erly. (35) See Rando's Parental Loss of a Child, supra at 54-56. (36) If you write about your thoughts and feelings, a journal can make a significant impact on reducing your stress. Controlled studies have shown that "expressive" journals have a substantial impact on all forms of stress. "Diary" journals (where the writer merely records facts) seem to have no impact at all. (37) Studies have shown that regardless of how religious you are, sincere prayer has a substantial healing effect. From a statis- tical viewpoint, it is your personal sincerity that matters, not the religious tradition you embrace. (38) Simply walking for fifteen minutes a day can greatly aid your ability to cope with life. (39) Emotion needs to come out and be expressed -- but in places where others will not be harmed or use the emotion to harm you. Often, in severe grief, a person does not need consolation so much as they need to mourn instead. Christ said "blessed are they that mourn" not "blessed are they that avoid mourning..." (40) When Paul foresaw the destruction of Jerusalem, where the members of the Church would lose their families and all their possessions, he wrote Hebrews. In that New Testament book, Paul talks a great deal about sufferring and trying to be patient. The one thing he warns against is bitterness. It is a sour gall that gives no solice and provides no healing. (41) For what it is worth, for every book listed here that does- n't seem "that good," I've read at least two that were worse. When a book has a special place (such as the fact that Embraced by the Light is pretty useless in providing insight for grief and loss, but as a best seller is the book you are most likely to see given), I have noted that fact. (42) Her latest book, You Can't Say That to Me (John Wiley & Sons, Inc. 1995), has just gone on sale and is extremely topical for anyone who is in a verbally abusive situation. Also extremely good (in my opinion) is her The Gentle Art of Communicating with Kids (John Wiley & Sons 1996) (43) A book I liked better is When Good-Bye Is Forever: Learning to Live Again After the Loss of a Child, John Bramblett (Ballan- tine/Inspirational, New York 1991). Unfortunately, it was not picked up for wide library sales distribution. Of the countless journal type books, I liked it the best and only wish it were easier to find. Like all things hard to find, I received it as a gift from someone who did not remember where they found it. 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