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The Arts in Psychotherapy, Vol. 24, No. 5, 431-438, 1997 Copyright 0 1997 Elsevier Science Ltd Printed in the USA. All rights reserved

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THE AIDS MEMORIAL QUILT: PERSONAL AND THERAPEUTIC USES

SHOSHANA D. KEREWSKY, MA*

On April 21, 1994, my friend, Frederic,’ died of MAI, a complication of AIDS. Frederic was a gifted musician, singer, actor and educator. Vital and stub- born to the end, he was planning a cross-country train trip and directing a small a capella ensemble the day before he died at the age of 33.

Frederic had been diagnosed with AIDS in Decem- ber, 1991. Shortly thereafter, he suggested that he, I and other classmates gather to make an AIDS Memo- rial Quilt panel to commemorate another college friend, “Mark,” who had died of AIDS earlier that year. Some of the classmates who joined us to make Mark’s panel knew that Frederic had AIDS; others did not. In the winter of 1993, I interviewed Frederic about his experience of making Mark’s panel and the ways in which that process had helped him to address the unresolved issues in their relationship. Frederic touched on other important outcomes of this project, including coming to terms with his own mortality.

Although Frederic’s activities with and relationship to the AIDS Memorial Quilt do not constitute an art therapy intervention, Frederic’s story, explored below, has important implications for art therapists and other providers who work with people with HIV and AIDS. Frederic’s observations illustrate the healing potential of working on the Quilt for people grieving the loss of a loved one and for those grappling with HIV in their own lives. The Quilt not only provides

individual opportunities for clarifying and resolving the issues raised by AIDS, but also facilitates the mourner’s joining with a larger community,

To provide a context for Frederic’s story, I will first briefly review relevant background material on AIDS, death and dying, expressive arts therapies and the NAMES Project AIDS Memorial Quilt. I will then turn to the Quilt’s potential utility and significance in the grieving process and finally to Frederic’s story to integrate and personalize these processes.

AIDS in the United States

In June, 1995, the Centers for Disease Control re- ported 476,899 documented cases of AIDS in the United States (Centers for Disease Control National AIDS Hotline, telephone communication, November 15, 1995). The Center’s estimate of one million per- sons infected with HIV means that one in 250 Ameri- cans is presently infected with HIV. Although these numbers are alarmingly high, AIDS is surrounded by silence and secrecy. As Susan Sontag (1989) suc- cinctly explained in AIDS and Its Metaphors:

With AIDS, the shame [of having the illness] is linked to an imputation of guilt; and the scandal is not at all obscure . . . . Indeed, to get AIDS is precisely to be revealed, in the majority of

*Shoshana Kerewsky is a doctoral candidate at Antioch New England Graduate School. Her dissertation research concerns HIV+ gay men who

make their own panels for the AIDS Memorial Quilt.

She thanks the friends and family of Frederic Evans, Jack Potter, the NAMES Project Rhode Island Chapter, Beacon Hill and Westport Friends Meetings, President Alfred Bloom of Swarthmore College, and Deborah Rozelle, MPS, ATR, CCMHC for their support and assistance. ‘Of the people referred to in this article, both Frederic and Jack asked that their names be used. Although the creation of “Mark’s” panel

(described below) was a public event, his name has been changed. None of these men was a client of the author and the interactions described

did not occur in a clinical context.

431

432 SHOSHANA D. KEREWSKY

[Western] cases so far, as a member of a certain “risk group,” a community of pariahs. The illness flushes out an identity that might have re- mained hidden from neighbors, job-mates, family, friends. (pp. 24-25)

Because of this shame, many people with AIDS keep their status a secret from even friends and family. The person with AIDS who reveals himself2 risks losing the very relationships and support he needs in order to grapple with a life-threatening illness (Herek & Glunt, 1988). Paradoxically, he may feel that he has to prevent intimacy in order to preserve his relationships. Many people with AIDS feel profoundly isolated and unable to come to terms with their illness and mortality.

Friends, family and partners of people with AIDS may also experience difficulty grieving and resolving their relationship with the person with AIDS. If he did not inform them of his illness, they may have not only his death but his secrets to come to terms with. They may also have strong reactions to not having been taken into his confidence. Even if they knew about the illness prior to the death, they may fear the same isolation and stigma the person with AIDS fears. If they themselves are HIV+, their feelings may well be complicated by fear about their own illness or they may experience survivor guilt. If they have not been tested for HIV and have lost a partner, they must struggle with their own fear of infection (Gilbert, 1988, p. 42).

HIV+, the drain on both financial and emotional resources that multiple deaths create (O’Donnell, 1992) and U.S. culture’s perception of death as abnormal rather than as part of the life cycle (O’Donnell, 1992). Further complicating the issue, contemporary U.S. culture emphasizes brief bereavement (Stroebe, Ger- gen, Gergen & Stroebe, 1992). If the process of coming to terms with the death is slowed by any of the above factors, the grieving person may find himself further out of step with the culture’s habits and may be seen as morbidly preoccupied or even mentally ill. Thus, as Stroebe et al. describe our current practices, “Relevant counseling . . . [is] designed to help achieve [the] process of withdrawal. Those who retain ties are considered maladjusted” (p. 1206). Adding to the complexity of the grief process for HIV+ people is that most have suffered the loss of numerous friends and family members from HIV/AIDS (Bartlett & Finkbeiner, 1993, pp. 261-262; Kalichman, 1995, p. 113; O’Donnell, 1992, p. 110; Siegel & Krauss, 1994, p. 27). Thus, the very people whose loss they are mourning are those community members who would otherwise have constituted the social support system. In other words, much of the grief work professionals engage in may fail to account for all the variables that make up the process of coming to terms with death by AIDS.

Even when it is possible to grieve in culturally- sanctioned ways, the feelings of loss may not be easy to resolve. Judith Herman (1992), addressing traumatic loss, wrote:

Issues of Death and Dying

Much has been written about the process of coming to terms with death and dying (e.g., Kiibler-Ross, 1969). The literature of counseling provides direct applications of these models to people with AIDS, expressing them as stages of grief or as pervasive themes that arise during the grief work (e.g., Barret, 1989; Doubleday, 1987; Hess, 1988; Nichols, 1987). This literature will only be alluded to here, while considerations more specific to people with AIDS and their families and friends are touched upon briefly.

Those who are physically harmed lose . . . their sense of bodily integrity. And those who lose important people in their lives face a new void in their relationships with friends, family, or community. Traumatic losses rupture the ordi- nary sequence of generations and defy the or- dinary social conventions of bereavement. The telling of the trauma story thus inevitably plunges the survivor into profound grief. Since so many of the losses are invisible or unrecog- nized, the customary rituals of mourning provide little consolation. (p. 188)

AIDS-specific issues include not only dealing with the stigma associated with the disease, but also the relative youth of this population, the number of people one knows who have already died or are

Though Herman wrote primarily about survivors of physical or sexual trauma, her description is cogent for those mourning a death by AIDS as well. Herman

‘1 am using a generic masculine pronoun because the case history that follows is that of a male.

AIDS MEMORIAL QUILT 433

saw recovery from these traumata as a process that potentially may take many years. This trauma para- digm may be helpful to bear in mind as we mourn or assist others in their mourning. Certainly the shame and secrecy associated with AIDS, together with the attitude that the person with the disease is somehow to blame for it (Sontag, 1989, p. 25), the social isolation, the lack of a cure and other factors described above can make a diagnosis of and death by AIDS traumatic for people with AIDS and their families and friends.

Though Herman’s language is extreme (“inevitable,” for example), it would behoove therapists and other providers to find alternatives to talking therapy for clients whose grief is so profound that its verbal expression causes unbearable distress. In some cases, this may take the form of providing direct intervention. In others, however, the therapist’s role may be to affirm the complexity and difficulty of experiencing and expressing sustained grief in a quick-fix culture. Under these circumstances the therapist may elect to educate the client about non-clinical options for grief work.

Ideally, this extra-therapeutic activity would not only allow the mourner to express his feelings and resolve his grief, but would also address the AIDS- related factors of shame and secrecy. He would be able to proceed at his own pace and participate in creating a ritual meaningful to himself. Finally, the intervention would allow the client to decrease his isolation and connect or re-engage with a supportive community. All of these considerations may be met through work on the AIDS Memorial Quilt, which, though not a therapeutic intervention per se, may play a valuable ancillary role in conjunction with counseling, therapy or other non-clinical activities intended to relieve the distress associated with the loss, grief and isolation of AIDS deaths.

Expressive Arts Therapy: An Overview of Relevant Literature

Before describing the Quilt and its relevance to the grieving process, a few words about expressive art therapy are in order. Although the Quilt is a community art project, not an art therapy intervention, it serves many of the functions associated with expressive therapies. The literature on this subject illuminates the Quilt’s healing capacities.

Art therapy is described functionally as “the use of art and other visual media in a therapeutic or treatment setting” (Dalley, 1984, pp. xi-xii) and philo-

sophically as “clients [using] the particular creative medium of art expression to advance the larger cre- ativity of making meaningful their own lives” (Wade- son, 1980, p. 5). The art product, which is non-verbal, allows for the expression of unconscious and unclear feelings (Dalley, pp. xii-xiii) with less repression and mediation than does a verbal product (Wadeson, p. 9). It permits the client to examine and recognize his feelings and thoughts while remaining apart from them (Wadeson, p. 10) and perhaps “rendering these feelings and experiences less threatening” (Dalley, p. xi). Thus, art therapy can help the client make sense of his experience and also distance himself from it if that is initially necessary. Indeed, Nichols (1987) warns that clinicians should not attempt to dislodge the client’s initial denial, which he sees as serving a useful purpose, but “rather let the patient have peace of mind” (Nichols, p. 138).

Other useful features of art therapy include both process and product. The act of creating something communicative and personal may help the client make meaning out of his experience. It may help the client “[get] out of [himlself,” know himself better or experience pleasure (Wadeson, 1980, p. 6). Dalley (1984) commented that “although perhaps initiated by a therapist, this activity is spontaneous, self- motivated, and also self-sustaining as the person be- comes absorbed in what he or she is doing” (p. xiv). The art activity in and of itself thus has the potential to help the client feel better even as he expresses potentially painful thoughts and feelings.

The art product is both personal and communicative. It is symbolic and may or may not initially be intelligible to the client, the therapist or another viewer. An important aspect of the art therapy is to bridge this communicative gap. This is often done by verbally exploring the product’s meaning for the client. The artwork may also be shared with others by the client, either in a therapeutic group setting or as an individual gesture. This facilitates the client’s expression of his experience and decreases his sense of isolation.

Finally, and more broadly, art can be “a means of modifying cultural and social norms” (Dalley, 1984, p. xvii). Those mourning a death by AIDS may be unable or unwilling to use the culture’s traditional rituals. The use of art may allow individuals and disenfranchised communities to create grief rituals that serve the same purposes as those of the dominant culture. More ambitiously, the new rituals may draw attention to the assumptions and exclusions that un-


derlie the dominant ritual or even serve to modify it over time. The AIDS Memorial Quilt is one such artwork.3

The NAMES Project AIDS Memorial Quilt

The AIDS Memorial Quilt is sponsored by the NAMES Project Foundation. It was begun in 1987 and the Project articulates its mission as follows:

1. to illustrate the enormity of the AIDS epidemic by showing the humanity behind the statistics,

2. to provide a positive and creative means of expression for those whose lives have been touched by the epidemic, and

3. to raise vital funds and encourage support for people with HIV/AIDS and their loved ones (A Display of the NAMES Project AIDS Memorial Quilt, 1992, p. 3).

All of these goals, but particularly the second, serve to encourage communication, increase a sense of community and create a new ritual for mourning and testimony.

The Quilt is composed of individual 3 x 6 foot panels, each commemorating a person who has died of AIDS. These are sewn into 12 x 12s composed of eight panels each. These in turn are joined by sashing, which serves as a walkway between 12 x 12s. The sashing is temporary so that 12 x 12s can be recon- nected in different configurations depending upon the requirements of the display of which they will be part. In the NAMES Project’s last projection, the Quilt was expected to include about 45,000 panels by October, 1996 (Milham, 199511996, p. 3), a huge number which nonetheless represents only a small fraction of those who have died of AIDS in the United States alone. Photographs and further discussion of the Quilt may be found in Ruskin’s (1988) The Quilt: Stories From The NAMES Project.

The symbol of the quilt calls up images and feelings of warmth, protection, benevolent authority, childhood and loving care. The traditional American quilt often took its fabrics from worn clothing so that examining a quilt aroused memories, nostalgia and reminiscences of times and people past. The quilt

joins disparate elements into a whole. Passed on to the next generation, it serves as a reminder of what has come before and what is to come. As such, it is a deeply powerful and moving icon.

Quilts were traditionally typically wrought by groups of women (though there are some exceptions). Quilting was the project of a small group within a larger community. Quilting bees provided the opportunity for conversation and pleasure as well as the creation of a product. The product itself was func- tional as well as beautiful. The American mourning quilt, which “visibly acknowledged the mourning taking place in a home” (Trechsel, 1994, p. 52) both symbolized the loss and provided a comforting activity for mourners, allowing them to engage in a creative and productive process related to their grief (At- kins, 1994, pp. 107, 110).

The AIDS Memorial Quilt resituates mourning for and memorializing death within this culturally salient quilting tradition. The panels in the AIDS Memorial Quilt are both highly personal and communicative. Some have been wrought by people who are obvi- ously skilled artists; others are simply names spray- painted on sheets. These are sewn side-by-side. Al- though most of the panels were made to memorialize individuals, some represent groups. For example, a panel by the Providence, Rhode Island Veterans Ad- ministration Medical Center commemorates 44 deaths.

The Quilt creates a new ritual by blending the symbolism and uses of the American quilt with the culture’s memorializing of the dead. Its sheer numbers obliquely criticize those who see AIDS as an insig- nificant problem, belie the belief (or wish) that the problem is confined to members of disenfranchised groups and challenge the assumption that homosexu- ality inevitably leads to shame and isolation. It is not only powerful emotionally, but politically as well. The Quilt demonstrates that there is a ritual and community available for mourners, whenever they are ready to join. As the world’s largest community arts project (The NAMES Project, April 11, 1995), the Quilt provides an unparalleled opportunity for individuals to participate in constructing and sharing their own responses to personal and communal tragedy.4

3For examples of other artistic media and works inspired by or created in response to AIDS, see Gott (1994). ‘?hough it is beyond the scope of this article, I note that the Oklahoma City bombing inspired a number of memorial quilts as well. These

quilts share some characteristics and functions of the AIDS Memorial Quilt. See Smith (1996) for a description of one such group of quilts.

AIDS MEMORIAL QUILT

Personal and Therapeutic Applications

The AIDS Memorial Quilt is potentially a very useful tool in the grief process or therapy of a person mourning a loss by AIDS. It is readily accessible to therapists without art therapy training or resources. Further, the Quilt provides the client and therapist with community connections outside the treatment setting. Because of the isolation often experienced by these clients, an intervention that increases the potential for community and communication may be more effective than a solely dyadic intervention and bring greater relief sooner.

Few authors refer to work on the Quilt as a therapeutic intervention or means of healing, though many proclaim the benefits of creating meaningful rituals, leaving personal legacies and working through the thoughts and feelings associated with living and dying with AIDS. Imber-Black and Roberts, in Rituals for Our Times (1992) and Wezeman in Creating Com- passion: Activities for Understanding HIV/AIDS (1994) are among the few who discuss the process in any depth; notably, both books are in the popular rather than scholarly genre. However, this dearth of clinical/technical exploration does not mean that therapists, providers and concerned others cannot help those in distress to find and become engaged with community resources for working on the Quilt. In- deed, the very lack of critical exploration of the Quilt’s therapeutic functions may mean that the in- formed therapist may provide the only link to the Quilt available to the client.

A best-possible outcome of a client’s engagement with the Quilt would be not only the opportunity to engage in a satisfying and meaningful bereavement, but an increase in the client’s self-esteem and a decrease in the negative effects of homophobia. The normalizing effects of the Quilt cannot be overesti- mated. Even for those with many resources at their disposal, working on the Quilt may accomplish many therapeutic and healing functions. I turn now to one such story.

Frederic’s Story

Although it is not clinical, the example that follows illustrates and illuminates many of the ideas discussed thus far. I interviewed Frederic in Spring, 1993, a little more than a year after he was diagnosed and a year before he died. Frederic and I had helped make a panel commemorating Mark, a college classmate of

us both and a former partner of Frederic’s. I knew that making the panel was very important to Frederic, and I wanted to learn more about what it meant to him. I interviewed him about the meaning of the Quilt as he understood it, his relationship with Mark, how working on the panel assisted his grief process and his reflections on his own mortality.

Frederic grew up in the suburbs of New York City where he began to come out at age 15. At 17, he joined the Society of Friends (the Quakers), a group that gave him a great sense of community. At Swarth- more College he was an active leader in the Lesbian and Gay Student Union and pursued interests in drama and music. It was here that he met both Jack and Mark and here where, before anyone knew of AIDS, he was probably infected.

Frederic first learned about AIDS in 1981 and re- membered thinking, “ ‘Christ, another thing to worry about.’ But also, ‘Nah, it won’t happen to me.’ ” In 1984 a friend, who “represented gay life in New York City” to him, died of AIDS. Frederic began thinking about AIDS, but “at that time, there was nothing you could do about it; you couldn’t go check [if you had the virus]. And then even when you could, for the first few years people [i.e., gay friends and the gay press] were suggesting that you not” because the tests were fallible; there was no real treatment; and there was concern about anonymity at the testing sites. Though he was in excellent health, Frederic alternated between panic and calm. He rarely discussed his fears with anyone.

About a year before he was diagnosed he learned that a college partner, Jack, had AIDS. At about this time he began to realize that he could no longer deny that something was wrong with his body. He had ter- rible bronchitis and pneumonia. He began noticing changes in his body, including early Kaposi’s Sar- coma lesions, which he convinced himself were something else. Finally, at age 3 1, he was hospitalized with PCP and diagnosed. Since then, “I got a tremendous amount of energy from not being in denial, to say, ‘Yes, I have AIDS and we’ll deal with it.’ ” A month after he was diagnosed he learned that Mark, another college partner, had died.

Although they had not been close for years, Fred- eric told me that he wanted to make a Quilt panel to commemorate Mark. We decided to create the panel during an alumni/se reunion at our alma mater so that Mark’s friends and classmates could participate as well. When we went to the reunion to make Mark’s panel some but not all of Frederic’s friends and class-


mates knew that Frederic had himself recently been diagnosed with AIDS. Frederic recalled experiencing a range of feelings and memories of Mark as we worked on the panel in the parlor of the college’s main building:

When we were putting together the Quilt, at [the college], L. and I were trading Mark stories. We were talking about something annoying and she said something very moving: “But that’s not how I remember him. I just remember our beautiful boy.” And I thought, “Oh, yes, Mark, my beamish boy. My annoying . . . “[chokes up]. I guess I’m not really conflicted in my feelings. I just have two feelings. A little bit of tenderness and a good deal of annoyance. They’re not fighting each other. That’s just how it is.

The process of making Mark’s panel was, for Fred- eric, very like his relationship with Mark himself:

You try to do a simple nice thing and all of a sudden it’s all involved. And as with my friend- ship with Mark . . . a lot of it was my decision. We didn’t have to have an entire border of tri- angles, 200 pieces, we didn’t have to have embroidery.

I think it was inevitable and natural that the making of the Quilt would recapitulate my relationship with him. Though it was very pointed, the way it happened. I ended up clean- ing up; I took the scraps home; I did all that stuff. And I volunteered to do it. It makes sense that I . . . . That’s interesting. Why does it make sense that I should do it? Because it was my idea.

The idea of making the panel was right and good. We were dealing with my illness and the knowledge that Mark was dead. It seemed like a good thing to do. So had dating Mark, a million years ago. Both of those involved so much more work and turmoil than I expected! The Quilt didn’t create much tumult. It’s done now; I can send it off anytime I want to. I haven’t sent it off because . . . it feels like maybe something cer- emonious needs to happen.

It is evident in Frederic’s comments that, as he worked on Mark’s panel, his thoughts turned to their relationship and questions not only of how Frederic would remember him, but also of how Frederic’s re-

lationship to making the panel paralleled aspects of his relationship to Mark. In his work on the panel, Frederic began to understand some of their emotional dynamics that he had not previously seen or articulated, most notably his own resentment of a role that, as he discovered, he had imposed on himself. This changed his perception of Mark, allowing Frederic to feel not just his annoyance, but the tenderness of his time with Mark as well.

Although Frederic had many friends and a great deal of community support, he still found it moving and meaningful that the work on the panel was coop- erative and that even this communally-wrought panel would not remain isolated:

It was important to me that we did it together, and that was a fun group of people working on it-not my best friends, not Mark’s best friends, but people who needed to be patching together an understanding of what was happening there. I was very impressed by the symbolic power of working on it. . . .

It is very important that you work on [the panel] with people; you send it away, and it goes into a larger meaning-making structure; it goes into a bigger thing. It’s somehow more comforting to have it be part of that big thing than, you know, a pretty wallhanging or something that’s only for . . . for me.

Reflecting on working on quilts in general, the AIDS Quilt in particular, and what it meant to him, Frederic articulated that quilts convey warmth and succor. He mused about two quilts he had had as a child and about a quilt he made for himself during the period before and after his diagnosis:

The Storm at Sea quilt. I started when I came back from [a trip], which in retrospect was the first time I was symptomatic-I had a night sweat, and I had lost 15 pounds when I was [there]-1 looked fabulous-but that [making the quilt] didn’t come out of thinking about the illness so much as being so sad . . and just feeling bereft and lonely. So I made the quilt, and I told everyone even when I was cutting it out, “This is a quilt about sadness.” And I chose those really beautiful muted colors and I cut it all up and I started sewing it together, and then I put it in a drawer for a year and a half. And I took it out right after I got out of the hospital. I

AIDS MEMORIAL QUILT 437

was a little sad and a lot feeling really bolstered by all the love my friends had shown me. And feeling really okay, but wanting to work on this quilt about sadness, and I finished it very, very quickly.

Frederic could only finish his Storm at Sea quilt, “a quilt about sadness,” after his own diagnosis. Nor does it seem likely that he could have begun Mark’s panel before his diagnosis, so strong was his denial and so frightening the prospect that he, too, was HIV+. After his diagnosis, work on Mark’s panel allowed Frederic to begin to explore his own mortality and the meaning of a death in his own community without an explicit focus on his own circumstances.

In speculating about the power, symbolism and healing potential of the AIDS Memorial Quilt, Fred- eric articulated many of the themes identified above: the importance of finding ways to grieve that remind one of one’s experience of the person who is mourned, the power of creating the panel in a group, the desire to create a meaningful memorial and making the panel a part of something larger in a greater community:

You just want to do something. You don’t know what to do, you’ve got to do something. . . . We did something Mark-directed, that somehow honored the knowledge that he’d been there and that he was gone.

A stone marker is for one person. The Quilt is so many people. You can visit it. It’s important that people come together to visit it. And it represents many deaths, not just one . . . . I guess it’s the community thing. Something you make together to remember many people. As far as mourning, I think we don’t mourn much because there’s not much to do when people die. Sometimes there’s bank accounts and stuff to straighten up, but mostly we don’t know what to do. We don’t know what to do with our emo- tions and we don’t know what to do with our. . . selves. So it’s good to put aside something and say, “This is mourning. This is it, I’m going to do this, and I’m going to do it in honor of this death that has happened.” And it could be al- most anything.

Why is a quilt a particularly nice way? Be- cause it’s beautiful and also because the way that people have put together their squares . . . they’re expressing things about the people they’ve lost;

they’re boiling down some essence. Now that I think about it, the lovely thing I have from Mark is some good memories of some good times in that wonderful place [college], and that’s what we [represented] on the square, that wonderful place . . . .

It’s wonderful to put together something so wonderfully creative . . . . I loved that we were doing something together and I think it had to do with me, too, and not even . . . not everyone there knew I was sick. But for me, it had to do with a tremendous expression of solidarity with the AIDS community. And I’ve been insisting that there’s no we/they here, and that the an- swer, the healing comes in fellow-feeling, and working on the Quilt square was an expression of that.

That individual meaning-making and also community meaning-making. It’s a communication thing; it gets you realigned with the world of love and not loneliness, fear, isolation, the Devil . . . .

Frederic reflected further on the process of sending the panel to the NAMES Project to be joined to others in the AIDS Memorial Quilt:

There’s a sense in the big Quilt where you send your message out and it’s gone; you don’t know what city it’s in and I think there’s some cleans- ing in that. I would like to get Mark’s square out of the house; I’d like to get it in the Quilt, and I know someone’s seeing it somewhere and, in a sense, I’m finished.

At the time of the interview, however, about a year after the reunion, Frederic still had not sent Mark’s panel to be joined with the Quilt.

Some people with AIDS have made panels for themselves. Frederic said that he would not do so. He had this to say about his own panel, and his own death:

A couple times [at the reunion] I stopped myself from making wry comments that would upset people: “Hey, no calico in mine, okay!,” you know? That’s not my job. I find myself sometimes feeling guilty about the pain I’m going to cause people by dying and then I have to stop and say, you know, they’re just going to have to deal with it. And I hate thinking about how I’m not going to be around to make jokes when I die! (laughs) I really do! I hate the thought of


my Quaker memorial service and S. being there and me not being able to elbow her in the ribs and say something funny. I just hate that! I think, when I have this fantasy, if I could be there to say something, what I’d want to say is, “Lighten up.” And then I understand that it’s not going to be my job to be there anymore; it’s their job and they’re going to have to deal with it. That’s a funny thing to me. . . . Because I want to be. I want to be there. And I’m not saying that in a plaintive, oh, the poor dying boy way, I’m just saying it as an honest desire. I want to be there and I won’t be and that’s really sad [he cries].

Shortly before his own death in April, 1994, Fred- eric sent Mark’s panel to the NAMES Project. How- ever, the Project had moved and the misaddressed package was returned to Frederic and so came into my hands. The panel needed minor repairs and seam re- inforcement. I kept Mark’s panel until I had begun my work on Frederic’s. I do not yet know what I will choose to represent all that Frederic has meant to me, but I will not use calico.

Summary

Frederic was my friend, not my client. He had many relationships and strong community support. His internalized homophobia was nominal and he had sound coping strategies. Even under these very positive circumstances, Frederic had a desire for creative meaning-making to mourn the loss of a loved one and to prepare for his own death. His work on the AIDS Memorial Quilt was deeply significant and allowed him the opportunity to express himself individually and communally and to explore his losses. The process of exploration, including talking about the experience of making the panel, helped him feel both con- nected to Mark and ready to let him go. It also provided a medium for his exploration of his own death and the effects it would have in his community.

For clients and others who have poorer support systems and who are not as attuned to their feelings, the Quilt can provide even more succor. In a supportive or therapeutic context, work on the Quilt may, as Frederic said, help people become realigned with the world of love.

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