"Thomas didn’t move, and hadn’t for two years. He suffered from a brain injury that left him profoundly disabled. He was incontinent, unable to eat, speak, gesture, or breathe on his own, and dependent on round-the-clock medical care. His parents realized they couldn’t give him the care he needed at home. This is how Thomas came to be in the Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada, in a hybrid unit that serves as both a permanent home and medical facility to similarly disabled children, who range in age from infancy to young adult. These “silent” children, as they are known, are not in acute life or death situations, but they cannot live without constant monitoring and medical care."
This is the fate of a large percentage of people. Babies fare somewhat better, with their big eyes, exaggerated reflexes and possibilities. People at the other end of life, not so much. Care homes for those with dementia are filled with people who once had full lives, but who are now treated as biological "objects" to be "managed." Input, throughput, output. Get them up, clean them up, sit them up, feed them, water them - leave them unattended for hours sometimes, because of doing the same for all the others, toilet them, put them back to bed, roll them over once in awhile. Add to that, the opportunities for abuse by frustrated underpaid caretakers. Language barriers. It can become a horror show.
Back to the article: A woman appears, Stefanie Blain-Moraes, an interesting cross between engineer and musician. She has volunteered for eight years at this facility. She noted the perfunctoriness that sets in after awhile, the detachment, the burnout, the treatment of these patients as objects to be dealt with. That happens naturally, to anyone, after years of never getting any real interaction or feedback.
So, she invented sound feedback - "biomusic"!!
"Biomusic sounds something like avant-garde electronic music. Generated using a Musical Instrument Digital Interface (MIDI), it has an ethereal, other-worldly quality. An underlying drumbeat represents heart rate. Skin conductivity—which varies with sweating—controls pitch. Respiration rate dictates the musical articulation and phrasing. The melody and chords are smooth and flowing through the breath, and soften towards the end of the breath. In the first minute of monitoring, the system takes a baseline reading and assigns the average to middle C. So, every instance of Biomusic begins with the same pitch and moves up or down from there. The overall key signature is determined by skin temperature, which changes gradually about 15 seconds after an emotional or physiological stimulus. States of stress, with fast and jagged breathing, sound different than states of relaxation, when the breath is slow and smooth. More subtle emotions can also be translated into distinct-sounding music."
Whoa! Suddenly, with critter brains able to indicate how they feel, caregivers have instant feedback on how their actions are affecting their charges, and can modulate - themselves! And furthermore, their own critter brains have a way to connect and affect this unconscious person's critter brain directly, without having to go through cumbersome, or non-existent anymore, strictly human brain language based social brain channels.
Brilliant. Freaking brilliant.
My brain turned immediately to wild fantasies about how marvelous it would be as a tool for human primate social grooming, manual therapy. Imagine being able to bypass all the conceptual clutter and gaining instant feedback through "biomusic" on how a patient's nervous system is responding to your input. Think how the manual therapy recipient could use the feedback from their own critter brain/ nervous system to enhance their own relationship to it!
I love this idea. Just love it.
Can't wait until we can implement it somehow in our work. Truly interactive. No clunky "thought" objects to navigate anymore. Just hook up, get the music started, then all four brains - the two language-interactive human brains and two critter brains, the nervous systems themselves of both people, could have a nice involved kinesthetic conversation aimed at reducing pain.
Think of all the possibilities:
1. Easy outcome tracking. You could do a baseline on that patient, in pain, before treatment, during assessment. You could record the whole interactive treatment process. Then another post treatment recording. Then compare. Wow.
2. No more arguing over what I call "thought" objects (models of treatment). No more need to set up horribly complicated test situations or try to teach patients how to fill out complicated questionnaires and send them in. All the data flows in effortlessly, and can be pooled ongoingly.
3. Instant feedback during treatment for the practitioner, who can easily and instinctively modulate themselves and what they're doing without having to go through all the "How does this feel?" and get a response you can't be completely sure of, because you have no idea to what extent the person understands what sort of feedback to provide, or might be trying to be nice, and not mention that you're inadvertently pulling their hair or something noceboic..
Another interesting part of this article: a definition of "personhood" that finally makes sense to me.
"Perhaps it shouldn’t matter that children like Thomas cannot respond or show gratitude for their care. And yet it does. When the nurse said that the biomusic reminded her that her charge was a “person” she invoked a concept with echoes in law, philosophy, and psychology: “Personhood” is a title for those whom we recognize as being like ourselves and worthy of our concern. The act of caring is a relation, not an attitude; it is a duet, not a solo."
"The act of caring is a relation, not an attitude; it is a duet, not a solo."
Personhood is an interaction, not a thing. It's a verb, not a noun. It's buried inside the biopsychosocial exchange. "Personhood" is a word, a concept, or a thought object, that represents this relationship and the connection embedded within it, between critter brains, acknowledged by human brains. It can be either inhabited, or abandoned.
We can provide better care by inhabiting the relationship. Therapeutically.