Contradiction in terms - or why not?

HIV/AIDS Treatment combined with memory work

Von Jonathan Morgan

In HIV and AIDS contexts, and in an era where ARVs and life saving and life prolonging pharmaceutical treatment have not been available to all who need them, memory work has evolved, more than anything else, as a preparation for death. Memory work needs to become more differentiated to meet different client needs, and the examples show how memory work and treatment can co-exist and indeed be integrated.

The National Association of Women Living with HIV and AIDS (NACWOLA), the Ugandan pioneers in memory work refer to memory books primarily as a communication tool. In contexts where treatment has not been accessible, the key messages that get communicated by parents living with HIV are ones around disclosure of HIV status, changing health status as the illness progresses, the possibility of the death of the caregiver, succession planning, and information about roots and family history seen to assist in the process of identity formation for the child who might grow up without parents. There is little doubt that classical memory work fits best and is most poignant in the face of death and dying. What needs questioning however, is the often unspoken assumptions that memory work applies only where there is no treatment and where premature death is inevitable.

The Memory Action Projects (MAP), a collaboration between REPSSI and the Psychology Department of the University of Capetown, South Africa, has begun to tailor made a range of psycho social tools, in response to a range of needs and situations facing HIV affected adults and children, all of whom have different levels of access to treatment and services. In various ways many practitioners try and allow the client to direct the process and choose the content and purpose for themselves. In a sense this high degree of client participation and power sharing sets up a kind of dynamic which places memory work as almost anything the participant wants it to be.

Memory work might be defined as the deliberate setting up of a safe space in which to contain the telling of a story. This space might be a room, or the shade under a tree, or a memory box, or a memory book, or a body map.

The scope of memory work is not necessarily restricted to the past, its purpose is often to deal with difficulties in the present, and its main orientation often tends towards planning and the future. Memory work has the purpose of organizing one’s thinking which is a form of orientation. In Narrative Therapy terms memory work may be defined as the restorying or reviewing of historical events, and the finding of a plot that can take one forward into the future with renewed energy or a new perspective. In a conscious way, one then begins to tentatively perform this alternative and hopeful story about oneself. Memory work then becomes the gathering and notching up, and then the laying down, of new positive memories.

In the same breath as HIV and AIDS, when we speak of treatment, it is of course ARVs that most often spring to mind, as the ultimate powerful treatment. Almost a cure. Then there is the treatment of opportunistic infections with antibiotics and antifungals. Then there is traditional or herbal medicine. And there is home based care and palliative care. In an ideal world, all these forms of treatment might co-exist and be integrated into a holistic and comprehensive service.

The question is how to tailor memory work to the needs of the client, and where to find the appropriate tools.

Scenario 1: An adult with advanced stage HIV who has no access to ARVs.

The anticipated needs of this client are best catered for by classical memory work. This client might wish to review and restory his or her life and come to terms with his or her impending death, map out his or her lineage and support system so that surviving children will know their roots and know who to turn to and/or open up communication with family members including children.

Scenario 2: The client has HIV and has access to ARVs.

The needs of this client perhaps center most strongly around adherence. ARV regimens demand that patients take the drugs several times a day (usually 3), every day for the rest of their lives. Missing very few dosages per month (less than 5%) puts the patient at risk around building resistance to the medication which renders it permanently ineffective in the fight against the virus. Once a patient has developed drug resistant strains of HIV, he is no longer a candidate for entire categories of ARVs, and has to face the illness without these powerful lines of assistance.

Thus the importance of adherence to the regimen becomes a priority. The reasons why patients struggle to adhere / comply to drug regimens has more to do with social and psychological factors than purely medical ones. For instance, the client / patient might not have disclosed his status to other household members, which makes it difficult to store the ARVs in the home, and to take them at meal times. Or a patient might become depressed and forgetful. Or he might not have enough money to get to the clinic in time to collect his monthly supply of ARVs.

It is against this backdrop that the Tracing book as Patient Held File was developed. They are a form of memory work in the context of ARVs in that they help patients to remember and not to forget to take their ARVs. One scaled down version of the life sized body map and a sheaf of blank pages made of transparent tracing paper make up the hand bound patient held file, in which the patient is able to track and communicate ongoing physical and emotional changes in his or her body and mind.

This might be useful from a counselling as well as medical perspective. Dr. Eve Subotzky, Doctor at the Masiphumelele Clinic, explained to us that a typical consultation was very short, like 3-5 minutes, and that the person had in all likelihood spent a long time in the queue. Add to this the fact that the patient often had no or little English. A tracing book was just the thing, Eve told us.

Dr. Eve has reported that every now and then, a patient brings a tracing book with them to the consultation. Even before tracing books, she often had the need to draw a little sketch to explain something or other to a patient. The tracing books help her to see the whole person, not just their bodies and organs, but their thoughts and worries, things that are not really considered her domain as a medical doctor. It is as if they help patients to become more active and less passive in the management of their own health.

From the tracing book of Noxolo Mqhobo, Patient and Adherence Monitor:

”On 20 December 2003 on my big body map I was feeling fine just some tiredness in my legs. The next week I drew myself coughing and sore lungs. I went to Dr Eve and she told me it was not TB just pneumonia on my lungs, I am coughing a lot, here are lines across my ribs. She also told me that my CD cell count was 147 and I filled it in on my tracing for week 2. I was given medication to take every day. In week 3 I drew and I took my tracing book with me to Dr Eve and she examined me. I went home and drink lots of water every day and a glass of fruit juice. The next week she told me my cd cell count was up to 423 from 147. I was very very happy and I drew myself with my arms up but my legs were still sore and I was very itchy….”

Scenario 3: HIV affected child whose mother is HIV positive with or without access to treatment.

Living with the knowledge that your only caregiver, your mother has HIV is not easy. It is important that the caregiver/parent communicates with the child to allay its anxieties and to have these issues out in the open, rather than as repressed fears and/or as taboo topics. The child might want to express some of these anxieties, communicate them to the mother/caregiver, and be assisted in gaining mastery over particular challenges. In response to the extraordinary range of challenges facing so many children made vulnerable by HIV and AIDS, Hero Books, a particular kind of memory book which combines elements of several types of child focused interventions, have been developed.

A Hero Book is a document, and a process, in which a child is invited to be the author, illustrator, main character and editor of a book that is designed to give them power over a specific challenge in their life. The Hero Book process can be described as one in which groups of children are led through a series of drawing exercises and autobiographical story telling, designed to help them with mastery over specific problems or challenges in their lives. At the end of the process, the child will have a hand bound story book of his/her own making, that heralds and reinforces his/or hero-survival-resilient qualities.

As a last question, if memory work is not necessarily about death but about life, and if memory work is not necessarily about the past but about the future, should it still be called memory work? My answer is yes. It is past experiences that are in the past, memory work is all about remembering, remembering is a verb, it is a doing word, and it helps us chart and map the paths we choose to lead us out of difficulty. Quantum physics would also have us that all time is continuous, past, present and future, some would even say living and dying, life and death. This is the space into which memory works.

Things you might want to draw in your body map:

Your life and health this week

  • Your health at the moment
  • Your illness right now
  • Things you have done this week to keep healthy
  • Things you have done this week that may make your sickness worse
  • Important happenings in your life this week
  • The things that are worrying you at the moment
  • Things you feel hopeful about right now

The virus

  • How does it look to you now?
  • How much do you feel is in your body at the moment?
  • Where in your body is it?
  • How is the virus being fought by your cells or ARVs?
  • You can also add your CD4 count or viral load if you know them

Antiretrovirals

  • How do they look to you inside your body?
  • What happens when they fight the virus?
  • Where in your body are they?
  • What helps you remember to take your ARVs?
  • When do you take your ARVs?
  • Have you forgotten any doses this week?
  • Have you had any side-effects? What? Where in your body?

Body Maps are large life-sized paintings containing representations of the virus, symbols of personal power and illustrations of the important marks left by life. (http://web.uct.ac.za/depts/cssr/body_maps.html)

* Jonathan Morgan, former director of the Memory Box Project, University of Cape Town. The Ten Million Memories Project (10MMP) is a project whose goal it is to scale up innovative, replicable and sustainable memory approaches within integrated psycho social programmes. Our hope is that it will become a pan African people’s movement that will reach at least 10 Million Children across Africa with Memory approaches by 2010. aidsfocus.ch is supporting the campaign with a documentary that will be launched on World Aids Day 2004.