This morning on ABC Classic FM Emma Ayres spoke about an autistic child who enjoys classical music during his Sound Therapy sessions. It reminded me of a moving story by SA music therapist Matthew Huckel I read in a Life News newsletter early last year.

In 2011 Mark Leigep, a man who had been in a Persistent Vegetative State for 6 years following severe brain injury from a motor vehicle accident was referred for music therapy to see if music could elicit some form of contact with Mark.

Music therapy is a clinical profession in neurology where music is used as a therapeutic tool to establish non-verbal forms of communication and also to help elicit emotional expression in patients with severe disability.

In 11 months of regular weekly therapy, video evidence collected over that period showed clearly that Mark could track objects and people, look towards sources of sounds, raise his thumb to verbal commands, and make changes in respiration to musical stimuli. The exciting findings from his therapy were to be presented to staff and family where it was hoped that further therapies could be applied to assess his communication.

However in August 2012, news arrived that Mark’s family had been successful in arranging a meeting with doctors to discuss the option of removing of fluids and nutrition to end his life. 

Frantically the evidence from music therapy and a detailed report was prepared for that meeting, in the hope that the findings would persuade the family and doctors from going ahead with their plans.

The findings in the report created huge anxiety for professional staff involved in Mark’s care. No one at all liked the idea of starving a patient, but also no one wanted to think about that being applied to someone who may have potential to communicate and show evidence of awareness.

In his last therapy session, Matthew played Matt Redman’s Father’s Song for Mark. His response is precious:

As the music began, Mark’s face changed and breathing increased, showing a heightened arousal. The sounds of Mark’s breathing integrated beautifully with the chords and melody of the song. Mark’s life, his breath was being sounded in music and this was woven into the sounds from the Father symbolically enacted through the song. It was a profound moment, and a celebration of Mark’s life, and acknowledgement of his personhood.

Fluids and nutrition were officially withdrawn at the beginning of September, and it took nearly 4 weeks for Mark to die. In 6 years, Mark had received little therapeutic intervention to explore his awareness. Labelled as a man with no personhood, death (euthanasia) by starvation was considered to be the only right choice.

I appreciated how Matthew Huckel concluded his essay:

I believe PVS patients are able to image God, and we ought to image God ourselves by responding with grace to people that are not able to respond. God responds to us and sustains us unconditionally despite the fact that we do not respond to Him. In our daily lives we can enact the persistent vegetative state where our efforts to respond are so minimal compared to the enormous and un-relenting attempts from God to reach us and make contact with us.

Let me know if you’d like to read the full story – I have it in print. More by Matthew Huckel here.