1031 CL Amsterdam
At 6pm the sun begins to set and by 630pm night has fallen. Every day. All year. Never a longer day, never a shorter day. The sun rises at the same time too, but I don’t know at what time, as despite the shifts of my career I am still a musician and early mornings are beyond me.
Back in England, at times I hated the short days of winter, finishing work in darkness. And I love long summer days that drift into nights.
630pm nightfall every day unnerves me. The regularity of sunset really bothers me, but for some people its certain rhythm provides the consistent beat of their lives.
The music therapy Musicians without Borders provides in Rwanda is focussed on young people who are not adhering to life-saving HIV medication. Anti-retroviral treatment available in Rwanda is excellent, and when taken well will suppress the virus to a minimal level – a level that would not show up on a regular HIV test. Medication is free, and the young people with whom we work are all patients at a clinic where counseling, nurses, and doctors are available also at no cost. Despite this, obstacles to taking the medication consistently remain.
These obstacles are as many as there are people. However, central to them, is stigma.
A complete lack of stigma to HIV would mean that somebody could pull out their medication in any setting, in a cafe for example, and it would be seen no differently than somebody taking a pastille for a sore throat. There is no reason that this should not be the case. Any other response is ignorance. In fact, people hide their medication from friends, strangers, and even family members, for fear of violent prejudice. This is a heart-breaking reason some young people make the decision not to take medication.
The stigmatized image of HIV, and the old-fashioned image of a life with HIV, make it a very difficult identity for many people to accept. In adolescents this can be particularly true, and the rejection of the identity can lead to rejection of healthcare too.
For some of the children and youth, they wake up in a home without any food. Medication on an empty stomach can be harsh, and they choose not to take it.
Another truth, is that children will be children. They finish school and go to play, as they should. They are in the streets kicking a ball, sitting with friends and chatting, causing mischief around their neighborhood, or at a friend’s house doing some homework. They’re not at home, and they’re not taking their medication. Time slips by. They forget.
These obstacles are practical and they are psychological. How can music therapy possibly begin to address them?
The answer I have come to, is that music therapy can address them as part of an integrated professional team. It can be the point where someone does manage to engage with healthcare. It can be a group process where they can move to trust, and share what is going on for them. It can be a journey to self awareness, where a self-destructive choice becomes better understood. It can be a model for a way of being with other people, and sharing part of oneself that normally remains hidden.
Living with fear and a secret is isolating. Having an identity forced on you is depersonalizing. Making a daily choice that you know is not healthy is painful, and it can be hard to reach the help you need. Music therapy is a place of connection between people, not their virus, with the direct intention of providing for each individual’s needs.
From that point, where necessary we can sit together with a doctor, and discuss medication options. We can discuss as a group how other people manage to hide their medication but still take it effectively. We can strategize for health. We can look with hope to the future.
One boy was struggling to find the time he would take his medication. In the morning, he didn’t take the medication if he didn’t have food. When he went home from school there was nobody else there and no clock. Sometimes he didn’t go straight home, but would stay and play around the streets. He had been told to take his medication at the same time every day, and had taken it seriously. If he missed the time he didn’t take it. He was at risk of becoming ill, but was scared to admit he wasn’t taking his meds like he had been told. The first week of music therapy, the boy’s music was quiet, and separate from the others. When he was asked about his medication, and how he was getting on, he said only “Ni meza”, “Fine”. Week two he came early to practice on a guitar. The third week, after playing, we again went round the small group, asking what challenges they were facing in their health. This time, the boy managed to explain his problem.
We went to the doctor who was able to change him to a once a day medication. The boy decided he would take it in the evening, as he had food in the evening. His colleagues in music therapy gave him advice how to secretly carry the tablets in case he didn’t go straight home. They agreed to check with him on his progress every week, after we had all come together playing music.
To take the medication at around the same time each day we agreed he would take it between 6pm and 630pm, as the sun set.