Alive, awake and ready to play

Six-year-old Eliah*, suffering from acute and debilitating cerebral palsy, was admitted to a palliative care centre for children in Cape Town during 2013. Soon thereafter, he was referred to MusicWorks for pain management.

Eliah is not able to walk or even move much, as his little body is in continuous spasm. His mouth appears to be fixed in a painful grimace. When admitted, he was also severely neglected and malnourished.

During the first two sessions, Eliah was in severe pain. Bedsores and a newly inserted feeding peg caused him huge discomfort. The only sound caregivers ever heard him make was a soft whimpering.

A huge smile was Eliah’s first response to our music therapist’s initial approach. She observed his ‘quiet presence’ and glimpses of a perceptive and alive young boy in the broken little body.

Music therapist Renee van den Berg explains: “I sang a few songs, with guitar, and in different musical styles. I playfully teased him by suddenly stopping mid-song and asking him what was happening, and was greeted with the broadest and most striking smile every time. Eliah could not move or make a sound, but his responsive expressions said ‘I’m alive, I’m awake and I’m ready to play’.”

“Eliah could not move or make a sound but his responsive expressions said ‘I’m alive, I’m awake and I’m ready to play’.”

By the third session, Eliah was making music.

“I was sitting very close, singing and playing guitar. With great effort and concentration, Eliah started to move his tongue and then stuck out his tongue. His mouth muscles started moving slowly and with determination, he was making a sound. More than a sound, a clear little voice could be heard. We answered each other’s singing, line for line. We were having a musical conversation.”

And Eliah did not let up, sustaining this interaction for some time. This was his space to communicate.

Renee and Eliah became aware of a growing semi-circle of nurses around them – all of the palliative care wing. Some were turning around, calling to other wards to come and listen. For a child like Eliah, in their care and in his condition, his behaviour was surprising and unusual. Soon the nurses were clapping and laughing, cheering on the music.

“Eliah! Eliah!” a nurse called, tears streaming down her face. The experience was hitting home. Inside this very frail, emaciated, broken little body, lived a beautiful, creative boy.

Music therapy with Eliah is continuing.

* Name changed to protect the child’s identity.