Being Alive Newsletter, Being Alive/Los Angeles - August 1993
Sandy Jacoby Klein and reported by Michael Kalla

Multiple Loss Syndrome consists of three elements:

- Grief that people feel, - A response similar to post traumatic stress syndrome, - Burnout affecting a person's ability to be present.

THE GRIEF

The resolution of grief is exacerbated by repeated losses that occur over a brief period of time. It is also complicated by society's attitudes toward homosexuals, IV drug users, and minorities those communities that are more frequently impacted by AIDS. Grief is rarely validated when relationships are not acceptable. The non-acceptance of these relationships in society has encouraged the formation of communities that have become unusually tight knit in many cities. And because of this closeness, the multiple losses have been even more devastating with some people burying more than 50 friends within a few years.

OTHER RESPONSES

It's difficult at best for the unaffected to relate to the multiple losses caused by AIDS. Perhaps it is best compared to a disaster situation where large numbers of a community are wiped out at one time. In these episodes, we see the impact, the recoil, and a post-traumatic period of recovery. In Multiple Loss due to AIDS, there are very important differences including the fact that the deaths are not stopping it's becoming commonplace to die in one's 30s and 40s. Long term planning and future goals are no longer discussed with enthusiasm, if they're discussed at all.

DIFFERENCES FROM NORMAL BEREAVEMENT

Multiple Loss Syndrome differs from bereavement in some important ways because individuals who face loss after loss cannot really be expected to bounce back. Each grieving process is compounded by the one before it. People who experience Multiple Loss do not have enough time between traumas to work through the many feelings of the grief process that lead to resolution. The focus seems to be on one major loss. After each new loss people seem to further grieve the loss that they consider most significant and that loss is dealt with as if that's the only one. When you have this kind of a process going on in grief then there's no way to start the resolution because each loss has to have some type of a process that you walk through and come out on the other side.

THE BURNOUT EFFECT

Multiple Loss can be characterized by feelings of numbness, perhaps an inability to emote or feel feelings or the expression of one's feelings in new ways, by pessimism, cynicism, fatalism or insecurity. The concern is that if people feel this way, they may engage in irresponsible, self destructive behavior. One of my patients told me that he felt a "snowball effect" when these deaths began to happen back to back. "I began to feel overwhelmed and disloyal in the sense that I haven't done enough to pay tribute to each of my friends." We see a lot of anger and that seems to be the most prevalent emotion in this grief. We know that anger is also increased by the ravages of the disease process the contagion, the neurological complications, the protracted illness and certainly disfigurement. Along with anger, despair is a word that frequently comes to mind. These combined losses leave a sense that all the emotions one had are now removed.

CHARACTERISTICS OF MULTIPLE LOSS

There are many symptoms that we associate with pathological grief. These include:

- intensified guilt or rage, - increased physical symptoms, - denial, - delayed reaction, - acting out of self-destructive behaviors.

Most of the time these are unconscious. People don't realize that they're doing this and they don't realize that they're related to unresolved grief. Many people feel disbelief when others talked about so many losses and at one time wondered how any of their friends could know so many people or have so many acquaintances until it starts happening to them. Some try to cope by looking at the good side of knowing so many and have an increased sense of having loved and been loved by some really incredible people.

There are also frequent complaints of a lack of connection to others, including an unwillingness to make new friends. When that happens and you become more isolated, then your support system diminishes and you find yourself trapped in this revolving wheel of feeling more alone and more isolated and afraid to go out. We also know that there are other losses than death. We mentioned loss of validation from society and certainly the loss of one's health, but we can talk about the loss of community, the loss of sexual freedom, of hope for the future, of dreams with a partner growing old together, loss of job stability, loss of family support, and loss of privacy and personal power because often, when HIV status becomes known, people are outted against their will.

I'd like to share with you some words from Mac. His best estimate is that he's lost 10 friends, 34 acquaintances and co-workers and 50 church members. He says, "I feel shell-shocked, angry, scared and numb. I isolate in defense. But there's no choice because doing nothing is not an option. I can't not care. Well, what has all this taught me? I have learned how to take better care of myself and my needs and really enjoy life and the people in it. Sure I help and I'm there for people right after I've taken care of ME."

ANTICIPATORY GRIEF

Anticipatory grief is a term used to refer to grieving before the actual death. This term can also refer to the apparent lack of grief reaction at the time of death. We know that death from AIDS is rarely sudden and it's prolonged character offers opportunities for anticipatory grief or "pre-death" bereavement. There still is no real clear cut evidence that this eases the mourning that one goes through after the death, but we know that it can influence the intensity of feelings.

It's also important to assess coping skills, suicide risk and other self destructive tendencies. Certainly, it's important to understand and reconnect people to support systems. Because of all the multiple losses over short periods of time, it's valuable to try to resolve each loss as fully as possible understanding the place that the person who died had in the life of the survivor.

This process offers closure and it reduces the guilt and the confusion that are often experienced when a friend dies and you can't quite find a new place in your life for that person. We know that the survivor may also be grieving the loss of the role of caregiver. Those who are grieving need to find venues to express their feelings to recognize their own losses and not be ashamed to share them.

RESOLUTIONS

Now that you've heard all of his background and some depressing ideas about grief and bereavement, what can we do about it? We can stay involved with friends and outside support systems in order to maintain a forum for discussion for all these feelings and stresses. Self expression with good listeners is one of the best predictors of grief recovery. How about taking an occasional HIV/AIDS vacation? This means time away from the constant reminder of the disease. Or if you check with your doctor first, maybe by not taking all those medications for a very short period of time. We can light a candle to represent loss and take a moment to remember those who had meaning in our lives. You can also light a candle for those living with HIV or for those who love someone with AIDS. This represents the continuing reinvestment in life and in hope.

Be aware of and apply as many as possible of the long term survivor attributes that were identified by Dr. Solomon in 1988. For instance, perceiving the treating physician as a collaborator and not interacting in a passive, compliant mode. Have a commitment to life in terms of unfinished business, unmet goals, or even as yet unfulfilled experiences and wishes. Find a new meaning as a result of the disease itself. Accept the reality of the diagnosis of AIDS in conjunction with the refusal to perceive the condition as a death sentence.

Long term survivors have the ability to withdraw from taxing involvements and to nurture themselves. They are assertive and have the ability to say "NO". Develop rituals such as the AIDS Quilt to symbolize the magnitude of the loss. Participate as fully as possible. Active participation has a connection to personal empowerment. Learn to focus your anger so that it can empower you instead of depress you. Acknowledge the anger and act it out in a helpful way. Dance. Sing loudly. Learn how to draw. Use this to explore underlying emotions that you might have neglected. Volunteer to help someone less fortunate than you. Pay attention to self care including grooming, exercise, nutritional support, fluid intake and rest.

Understand that you always have choices and learn how to make the best ones. This creates a sense of control because it identifies the things that you can still be in charge of. You can't change the occurrence of the illness or of death but you can change your attitude toward it. Be realistic about setting possible outcomes for yourself. Learn to find a new place in your life for those who have died so that their specialness can continue to enrich you.

Hold onto your sense of humor. George Bernard Shaw said that "Life does not cease to be funny when people die anymore than it ceases to be serious when people laugh." Religious activity, afterlife and spiritual beliefs keep you connected to others, so explore your own beliefs and challenge your own assumptions.

There are special concerns for gay people who are bereaved. And these concerns are compounded by the multiple losses faced by the community in relation to HIV and AIDS. The mechanisms for coping with this can be explored with knowledgeable understanding clinicians who are well informed about grief, AIDS and gay issues. The loss of significant others is painful, but the pain can be eased by keeping your sense of humor, by caring and by acceptance. As Robert Cody said "Have the courage to live, anybody can die."

(Sandra Jacoby Klein, MA, MFT, maintains a practice in West Hollywood and welcomes your calls at 310.652.2501.)
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BA930830

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