Tracing Books are an extension of body maps which are life sized human form tracings that can be described in the languages of art therapy, participatory research, anatomical charts, psychological projective instruments, and more.

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.

 After one week, on the first sheet of tracing paper, an infection might be recorded and marked on the left thigh. By week 2, it might have gotten smaller or bigger. A TB related cough might find expression on the chest. With the patient’s consent, the doctor might sketch out a lung onto the page. A change in environmental status for instance being forced to live outside on the street as a result of disclosure of HIV status might be recorded as a note outside the body. In these and other contexts, communication between doctor and patient, and between patient and household members, and between support group members might be enhanced.

 Some of the limitations of life sized body maps are that they are one dimensional, unwieldy and not very private. By making a tracing book, with each new page, you begin to animate the flatness and fixed temporal limitations of the body map forwards in time and space which is both a communication tool and a reflective journal.

    Tracing books have been piloted amongst a group of patients at Masiphumelele Clinic and are in an early stage of development. 

Contribution by Anya Subotzky – Artist and Psychology Student

 In 2003, Anya completed a fellowship within the Memory Box Project, and as an artist began to explore memory work in a stronger visual and artistic way than had been done previously. Building on the body mapping work of Jane Solomon, she and Nondumiso Hwele, a Khayelitsha A-team member, facilitated a group of Masiphumelele men and women from the Living Hope Support Group, a body mapping process.

The body maps you see on this poster are the ones facilitated by Anya.

 The body mapping work had begun in mid 2003, before access to ARVs in the community. This sense of “no access to treatment” and of “hopelessness” was highly apparent in many of these body maps and in the explanations offered by the participants.

 Listening to the explanations alerted us to how, in itself, body mapping can well be counter therapeutic. There is no doubt that it is a very evocative and maybe a “too powerful” projective and diagnostic tool. What remains to be worked on is clearer guidelines how what is evoked can be contained. What struck Anya and I, after this session was the fact that having unleashed such powerful feelings via the body map, there was no way that this could be the end of the intervention. We knew that we needed to develop a tool that was smaller and more containing than the huge body maps, and that could give bite-sized pieces to work with. A tool that could track and trace changes and constants in body and mind over time.

 Anya’s Fine Art sensibility and attention to detail kicked in and she went on to make 18 tracing books which we handed out to members of the support group. Actual tracing paper was used so that when the person looked at any page, they were looking at a composite layered version of themselves, one that was made up of several documented memories.
 

Contribution by Eve Subotzky, Doctor Masiphumelele Clinic 

 I have always been struck by the finding in an American study, that continuity of care by a health care worker experienced in HIV, improves the prognosis of people with HIV independently of any treatment given. It is a challenge to sustain quality continuity of care in increasingly busy outpatient clinics. In this context I was excited by the idea of a graphic patient held record that could be brought to the consultation. This was more than borne out for me in this small pilot study.

 The tracing books helps me to see the whole person, not just their bodies and organs, but their thoughts and worries, even if I am not able to address these directly, it is important to me that I am able to acknowledge them.

 With one patient in the pilot, I was struck by how her record allowed space in the consultation for communicating wellness and not only illness. Another patient’s beautifully graphic picture conveyed all the complexities and paradox around being at the same time, happy, anxious, unwell and better. Her tracing also illustrated a significant new symptom, peripheral neuropathy, which I may well otherwise have missed. A third patient’s tracing book not only tracked all the dramatic emotional and physical changes he had ridden out in the last few months, but how he used this book primarily to communicate to me his overriding concerns about his son who was very ill but is slowly improving on ARVs

THINGS YOU MIGHT WANT TO DRAW IN YOUR SMALL 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 [for example eating healthy
             food, taking your medicines, going to a support group or disclosing to a close
             family member

   -         Things you have done this week that may make your sickness worse
              [for example, smoking or drinking alcohol or having unsafe sex]

-          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

ARVs

-          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?

TB

-          Are you coughing?

-          Do you sweat at night?

-          Are you losing weight?
 

Other symptoms in the rest of your body
 

-          SKIN: rashes, scars or marks

-          STOMACH: diarrhea, nausea or vomiting

-          LUNGS: difficulty breathing, shortness of breath

-          GLANDS: swollen, sore

-          HEAD: headaches, pain

-          STDs

-          ANYWHERE ON YOUR BODY: Sores or Ulcers

-          Pain, “pins and needles”, numbness, tingling, discomfort – where?

-          Fever

-          Not wanting to eat (appetite loss)

-          Difficulty falling asleep

-          Problems remembering things

-          Times when you feel confused or disoriented

-          Bad dreams or nightmares

 Noxolo Mahobo – Patient and Adherence Monitor

On 20 December 2003 on my big body map I was feeling fine just some tiredness in my legs.

I showed things I like and don’t like. When I was five years old there was Xhosa beer and they slaughtered a goat and put a razor on my face. I love this mark on my face, its my culture, and my brothers and sisters have scars like this on their face. Then I drew this big body map smaller so it can fit into my tracing book.

The next week I drew myself coughing and sore lungs. I took it to Dr Eve and she told me it was not TB just pneumonia on my lungs. She also told me that my CD cell count from on year ago when I had TB was 147 I filled it in on my tracing for week 2. I was given medication to take every day.

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.

I was the first person in my community to disclose and I am an adherence monitor for CIPRA. On the first day of the new job I drew all 5 of us adherence monitors sitting around the table sharing things about training, having a cup of tea together. And the next week I drew me sitting and listening to our manager at the office. Nothing about my HIV, just me in my new job.

But the next week, in week 10, I drew myself lying in bed, feeling tired, dry cough, chest pains, always sleepy, always thirsty. On that last page, when I took my book to Dr Eve, and told her about my cough, she asked me if she could draw in my book. I was glad and with a very thin red pen she drew 2 lungs, one with little black dots in it, and she wrote "damaged lung, easily infected again" and this made me understand easily. But with my cd only 255, it worries me a lot. I hope I can get ARVs when I need them.   

I showed my tracing book to Winnie my daughter and explained why I was not feeling well and couldn’t help her with her homework. She understood me well.

Liziwe Kweyama – patient and memory box project intern graduate

This is my tracing book, it has a picture of my big body map on the cover.

This is my body map. You all know I am HIV positive so I did my body map about my status. These are the virus and these are the cells. This is my first mark. I was fighting my brother’s girlfriend and she put me on the table and cut me with a knife. In Eastern Cape I went to steal apricots and I was cut by a wire. As you can see outside my body map I have made it beautiful. Here is a plant because when I breathe out at night carbon dioxide, the plant gives me fresh air. I got fresh air direct from flowers and plants. This is a juke box, in past I liked to go to some shebeens and have some fun. In everything I do I put this red ribbon because I am proud of it. This little person is a counselor which is what I want to be. I am a driver of HIV and I don’t want HIV to drive me.

Since I stopped working last year things have been hard but this book has helped me a lot. I showed it to a friend of mine and used it to counsel her. On one page I have a photo of two of my friends. I call them my positive family. When I take this book with me to Dr Eve it is better than not taking it because communication is better. Last time I took it I told her I am not HIV because you can see every week except for one when I had flu I have been very healthy. I can see how long I have been healthy and what I am doing right by looking at this tracing book. Maybe I will not need ARVs for a long long time.

Xolisa Sijora – Patient and CIPRA

This is my body map. My son’s name is Luthando. All my problems started when he was born, I took his mother to the day hospital but she passed away. As time goes by he gains weight, but he has the same problem as his mother, at the hospital they noticed her blood has HIV. Even though it is my tracing book, on the first page I drew myself and Luthando and both of our dates of birth. After the death of his mother. One hand shows that my heart is full of blood. One hand holds my son.