Subject: loss & AIDS article
From: [email-masked]
Date: Fri, 17 Jan 1997 07:40:03 -0500 (EST)

LOSS and AIDS
Published in the People With AIDS Coalition Newsline, Issue #75, April, 1992
Michael Shernoff, MSW
 1992 Michael Shernoff
     Permission is granted to copy or reproduce this article either in full or in part, without
prior written authorization of the author on the sole condition that the author is credited and
notified of reproduction

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.
     MORTAL THOUGHTS
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.
     GOING DEEPER
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.
Keywords: AIDS, AIDS, AIDS, AIDS, HIV, HIV, HIV, HIV, loss, loss, loss, loss, dying, dying,
dying, dying.

Michael Shernoff is a psychotherapist in private practice in Manhattan and can be reached at
[email-masked] or at his home page http://members.aol.com/therapysvc

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