Finding Ourselves Through Our Teachers
What I love most about the concept of care partnership is the opportunity to discover new teachers and even be surprised by who they might be. The 18-year anniversary of my father’s passing has just recently come and gone, and I find myself reflecting on this. In the midst of living with Alzheimer’s disease, my father showed up as one of the most powerful and influential teachers I’ve ever had. Through the most subtle of interactions, he could blow my assumptions to bits.
There’s a kind of liberation in feeling humbled, in discovering that you really don’t have it all figured out after all. It creates an opening… a place inside you that has the potential to recreate itself. It is at these moments that I am more in touch than ever with the inherent interconnectedness of all living things. When I become entrenched in judgment and a sense of “knowing it all,” I feel more isolated, less empathetic, and less in tune with those around me. I like myself less. The world is less colorful… less full of promise.
I get it. It’s not easy to stay in a place of open-hearted curiosity all of the time, especially when we are trying to transform institutional systems of care that work against us every step of the way. That’s why we need to turn to our teachers, often – to keep us grounded in what’s possible. I feel blessed to have had such teachers in my life. Yes, there’s Dad. There is also my brilliant friend, Zacc, a 19-year old aspiring filmmaker, who also lives with Duchennes Muscular Dystrophy. Every moment I spend with Zacc, I have the opportunity to turn how I perceive my world inside out. I just need to heed the call, and when I do, I grow. Learn more about what Zacc has taught me in the Delicate Dance.
And then, there are two beautiful muses named Hannah and Haleigh Jane Thomas. These two sisters, only a few years apart, have spoken volumes about the giving and receiving of care without uttering a word. Living with Ohtahara Syndrome, they’ve require 24-hour nursing care; yet, the care they offer in return has been a deeply meaningful wake-up call for their care partners. Recently, I had the privilege to speak with some of these individuals about what Hannah Thomas, who passed away in March 2015, taught them. Watch this video to hear directly from members of her care partner team about the compelling ways she has touched their lives forever.
As we come up on Juneteenth this weekend – a celebration of emancipation – I encourage you to reflect on who your teachers are. Who are those individuals who have helped free you from systemic ways of thinking about care? Who wakes you up to the potential alive in human relationships – relationships involving all kinds of people, of different ages and abilities? Who are those people who have cracked open your heart, and helped you see what you haven’t been seeing all along? Tell us about them. We’d love to hear your stories.