AIDS has become virtually synonymous with loss. This is obviously and painfully true when we think of a specific person, or more likely, several people we have known and loved who have died from complications associated with AIDS. It is not uncommon for a person to be simultaneously mourning for several people, all who have died within a relatively short time... all from AIDS, all of them close. Attempting to mourn several people at once complicates the grieving process and results in a prolonged period of mourning where the survivor may be unable to separate their feelings towards one particular friend or loved one.
I know several families in which two gay sons both died from AIDS in less than a year. In other families one gay son has died from AIDS and another is HIV seropositive or symptomatic. Many inner-city families are experiencing multiple AlDS-related deaths, as this disease reaches two generations simultaneously, leaving the surviving family members reeling in an emotional holocaust.
This month's column is heavy, and many may find it particularly depressing. Yet one of the purposes of Newsline is to provide a forum where issues can be raised and discussed that are not receiving enough, if any, attention elsewhere. I am of the firm belief that it is useful and important to articulate concerns so that they can be demystified. No one needs to feel that he or she is the only person feeling this way, or is unusual in his or her own fears of pain.
Most people in contemporary America live with an illusion of their own immortality. What this means is that though intellectually each of us knows that one day we will die, there is a part of us that cannot comprehend the world continuing without us. When someone close to us, or we ourselves are diagnosed with a life threatening condition, our denial about our own death is usually confronted. Watching friends sicken and die from AIDS has had the effect on many people of forcing~them to begin to face the reality of their own mortality, especially if they have HIV or AIDS.
The impact of being so surrounded by people who are in the final phase of their lives, or who have died, can understandably result in the surviving individuals feeling very shaken, sad, depressed angry and vulnerable. This sense of f,ragility and vulnerability will be heightened if the surviving people are themselves at risk of succumbing to the same condition that killed the people they loved.
Living in the midst of this can impact upon a person in several ways. He or she can feel so overwhelmed with despair and hopelessness that they become withdrawn and give up on any hope for a meaningful quality of life. Some people become imbued with the preciousness of the gift of their life as they have it today and attempt to maximize their experiences and opportunities. Some people become so depressed that they are incapable of accomplishing the things they have decided are important. Most people have some combination of these reactions in various degrees, and different moods predominate at different points in time. But while death is an enormous loss that all people living with AIDS/HIV are facing, death is only one significant loss with which we learn to cope. The rest of this article will discuss the variety of ways that loss becomes part of the experience of living with AIDS.
Many people with AIDS/HIV begin to experience a loss of energy early in the course of their illness. Sometimes it is quite subtle, like not. being able to exercise as hard as one used to, or not being able to run up a flight of stairs or just stay awake as late. Loss of energy is only one of numerous physical losses that may be faced during the course of a prolonged illness. As people are living longer they are experiencing different kinds of physical and mental deterioration. This "premature geriatric" condition is characterized by the rapid aging of a person because of multiple AlDS-related infections, and may result in him or her feeling as if they have been robbed of their youth in months instead of over decades. This experience in itself is startling and often enrages the person who is attempting to adapt to life with AIDS.
Neuropathy or progressed K.S. may result in a person previously blessed with vitality to now require a cane or walker, or just not being able to walk as quickly as they used to before getting sick. All of the physical losses and body changes that a person living with AIDS experiences can result in a significant loss of autonomy and independence. Some people with advanced AIDS can no longer venture forth to do the simplest errands or go for a walk unless accompanied by someone else. This kind of physical debilitation understandably results in a loss of self-confidence.
It an individual is suffering from AlDS-related neurological impairment, he or she may experience short term memory loss. The humiliation and/or shame that often accompanies the person with AIDS recognizing that he or she is losing some of their mental faculties can have a devastating impact. This can include a loss of one's ability to manage one's own medications, care, or medical appointments. The feelings that accompany this loss are often a mixture of rage and frustration at feeling like an infant who needs to be taken care of. Thus many people with advanced AIDS no longer feel like autonomous adults--a significant loss all the way around.
AIDS can have an important impact upon a person due to changes in body image. If a person has lesions, or a Hickman catheter, they have daily reminders of their conditions, and may not feel attractive. It a PWA used to work out at a gym or be athletic, and a loss of appetite or a wasting condition has caused weight loss and loss of muscle mass and tone, these are other changes/losses that need to be integrated. The chemotherapy for Lymphomas or K.S. can result in loss of hair. All of these can result in the person with AIDS feeling like an old person, or at least not like the person they had grown to know over the course of their adult lite.
There are few indignities directly related to loss from AIDS that are more powerful than loss of control over your own body. For many people with AIDS, bouts of incontinence can be embarrassing, humiliating and enraging. This, more than any other change in a person's body, can cause a person to feel humiliated, as if he had regressed to an earlier time when he was a child. Seizures are another way that many PWAs experience a loss of control over their bodies. I have heard more than one PWA express his or her feelings about these kinds of changes by saying that their body was no longer their friend, something that they could count on to perform in expected ways.
Most people obtain a large measure of their self-definition from their work. When AIDS results in a person no longer being able to work, a huge vacuum is created in terms of time that is left unstructured. The losses that are directly connected to loss of work include loss of income, the feeling that one is a productive member of society, and a place to go to focus energies for a large number of hours. One way of counter-acting these feelings is by volunteering at a local AIDS service organization and attempting to help other people living with AIDS, or creating new diversions or projects for yourself.
If the person with AIDS is a mother and a single head of a household, as many women with AIDS are, they may become too weak to be able to actively take care of their children. The enormity of the loss of being able to care for your children is overwhelming. This naturally contributes to a growing sense of powerlessness, helplessness and worthlessness, since many women derive an important sense of value and accomplishment from their role in life as a mother.
For people who have been rejected by their families, this abandonment is a powerful loss at a time in their life when each support is vital. Many people with AIDS may be the last surviving member of their friendship group. This is particularly difficult to live through and can contribute to the depression that raises questions such as, ~What do I have to live for?" or "Why should I continue to struggle?"
While this does not occur for everyone, many people with AIDS/HIV lose their sex drive. As Charles Barber, a PWA wrote in a recent article in NYQ: "People with AIDS/HIV have learned that, after a certain number of years of immune suppression and use of multiple medications, you don't get hard-one automatically any more." ( AIDS Apartheid," NYQ) One of the points of Charles's article was that men with AIDS or HIV have often lost the opportunity to form liaisons with other men for romance and/or sex. Many PWAs who are single have lost the hope or expectation that they may ever again have a life partner or sex again.
The Subtle Losses
How does the loss of a sense of well-being become quantified? I have heard numerous people with AIDS talk about their feelings regarding the kiss of their dreams, a specific vision of the future, or for specific goals they had been working towards. The enormity of the loss of a vision of the future encompasses everything, and can touch on all aspects of a person's self-image, identity and personhood.
While I realize that I may have painted a depressing picture, the purpose of this article is not to say that each person with AIDS should prepare him or herself to experience all of the above mentioned losses. But the reality is that every person living with AIDS must grapple with some specific losses. For many PWAs, especially those who are in support groups, the issues discussed in this article will be familiar. But not all people with AIDS/HIV know other persons living with the disease. This is especially true if you do not live in or near a large urban center where there are organized supports systems.
Coping with loss is difficult for most people, even if their physical health is flawless. It is not uncommon for people reacting to loss to be catapulted into a state of crisis where they feel emotionally disorganized and unable to cope. One of the things that occurs in conjunction with a diagnosis of AIDS or HIV seropositivity is that there are multiple losses that all occur in a relatively short period of time, resulting in the person becoming overwhelmed and/or feeling that his or her life has gone totally out of control. The multiple losses that are a hallmark of AIDS/HIV can overwhelm even the most resourceful person.
It is for precisely these reasons that AIDS service organizations and PWA self-empowerment groups have been established. No one should have to go through AIDS/HIV alone. Only by recognizing the normalcy of the painful and difficult feelings that accompany loss resulting from AIDS can a person be compassionate to him/herself and obtain all the peer support, professional assistance and support of friends and family that will enable you to live with dignity and a sense of balance during this very difficult time.
Published in the People With AIDS Coalition Newsline, Issue #75, April, 1992
©1992 Michael Shernoff