The Delicate Dance
This article originally ran in theJuly / August 2015 edition of PS Magazine: Super Humans on p.23.
Sometimes, the most extraordinary feats come in subtle, yet profound, packages. As human beings, I find that our greatest displays of strength and courage are often those that are deeply rooted in our vulnerability. So I have learned, anyway, from many venerable teachers – one of them, an 18-year old friend of mine named Zacc. As an infant, Zacc was diagnosed with Duchenne Muscular Dystrophy, a condition involving the progressive loss of muscle function. In the 14 years I’ve known him, Zacc has always exuded a singular kind of wisdom, simply by being himself.
At The Eden Alternative, we define an Elder as “someone who, by virtue of life experience, is here to teach us how to live.” As Zacc’s abilities change over time, he brings a sense of grace and presence to his experience, rarely seen in others thrice his age living through less challenging circumstances. Bearing witness to his journey, I’ve been touched again and again by his thoughtful reflections, his humor, and the gentle, unassuming way he moves through his world. Just when I didn’t think Zacc could top what he’s taught me, one quiet night in his presence delivered one of the most powerful exchanges I’ve ever had the honor to share with another human being.
Some months ago, Zacc and his family were faced with a difficult decision. Medical tests had revealed that Zacc’s spine was changing in ways that could threaten his remaining mobility. Doctors suggested they consider a complicated and controversial surgery that involved supporting his spine with rods. After weighing the potential gains and the risks (which were many), Zacc and his family decided to take the plunge and pursue the surgery. The weeks to follow involved a long and difficult recovery period, where Zacc relied on the support of others to turn his body every hour or so. As a close family friend, I took a night shift with him, while the rest of the family slept. The process of moving Zacc from one position to another was tender work, given what his body had been through, and I found myself starting to over-function. Others might have become impatient with me, but Zacc simply relaxed and gently, slowly described to me exactly how to move each limb one micro-step at a time.
What began as a slightly awkward interaction began to ease into something more synchronized. My impulse to be perfect for him began to dissolve, and in its place was only breath. With each calmly whispered word, my own agenda simply slipped away. “Now lift my ankle and place the pillow there, a little to the right. Yes… that’s good. Now try bunching the pillow a little bit higher.” Each phrase was an invitation to let go and become an extension of him, an opportunity to tap into something bigger than both of us – an innate sense of connectedness, always there, yet often ignored. Like partners in a delicate dance, we’d found a flow together. And I was humbled… humbled by the awareness that it wasn’t about me being the most remarkable caregiver or about Zacc needing me. It was about attuning to each other and accessing something that, when you think about it, is really always there – the opportunity to both give and receive that is alive in every moment. I felt my heart expand. This was not an act of care martyrdom; it was a partnership – a care partnership. As Zacc sought my support through softly spoken words, he offered me the gift of presence – a reminder that dropping into my senses and choosing to simply “be” with another can soothe even the most restless of souls.
In the presence of any wise Elder, the learning is always deeper still. What would our world be, I asked myself, if each of us could ask for what we needed with the same reassuring clarity as Zacc had offered me? Could I bring the same patience and compassion to showing others how to “hold me” safely as I move through my world? And once there was only breath, the answer came. “Yes… one micro-step at a time.”