Monday, January 30, 2017

Soul Repair in a Cruel Era

photo by Carl Jackson

On Friday night, poet and MacArthur Genius, Heather McHugh, graced a room full of my friends who came to watch a screening of her and Adam Larsen's documentary UNDERSUNG. The documentary is a love story unlike any you might have seen, following four families as they "explore the limits of human need and in the process show us something limitless."

Long-time readers of this blog know that several years ago I was fortunate to receive a one-week, all-expense paid respite in Victoria, Canada. Caregifted is a non-profit foundation founded by Heather shortly after she received her Genius award. Family caregivers who have been caring for their disabled relative for at least ten years are eligible to receive the one-week respite grants.  The week quite literally changed my life, transforming my perceptions of identity and what my future might be. I felt grounded, at peace and truly rested for the first time in nearly two decades. I felt a deep and abiding sense of possibility that holds true even today, three years since I lay on a bed by myself in a little apartment in Canada, took long walks on a log-strewn beach, wandered the small town and took long, luxurious baths while the rain pattered on the ceiling.

One of my best friends, Cara, opened her gorgeous home to all of us on Friday evening. Here I am in a room full of people that I love, trying to do justice to what Heather and Caregifted gave me that summer:

photo by Carl Jackson

Heather is not just an angel and philanthropist but a poet. When we planned the evening, she wrote me:

We could think of these gatherings as soul repair in a cruel era. Something we can do, as artists and philanthropists, to re-secure communities of kindness. I see these gatherings as just another way (like the marches) of re-securing our premises in principled kindness, over and against mockeries and manhandlings and one-upsmanships.

Given the constant drumbeat of hideous news and our mounting fears, particularly for those of us in the disability community (our disabled children and young adults are among the most vulnerable in the country), Heather's message was truly soul-repairing. She read two powerful poems and then led us down a labyrinthine path, telling us how caregivers have inspired and motivated her to action. I can honestly say that I still don't understand how this woman who is not a mother herself has accomplished something incredibly profound in understanding exactly what our experiences are -- both the joys and the sorrows -- and reaching out to help us in a way that has eluded even our closest friends and relatives. She is one of the great humanitarians, I think, of our time.

On Friday night, Heather truly secured our premises in principled kindness.

I find myself, again, deeply in debt to both Heather and the many friends who came out to support Caregifted.

Thank you, beautiful people!

Make a donation to Caregifted, if you're so inclined!

The documentary can be streamed on Amazon now, and I highly recommend that you watch it. Here's a clip:



  1. I have added a link to your blog on mine.

  2. Watching the last woman in the clip, holding hands with her son as he drags her or drags behind her, now I know what I look like. It still makes me sad, even after 25 years. You would think that it would stop hurting but it doesn't. I wonder what it will be like in twenty years when I'm 74 and Katie is 45. What will we be like? It scares me.

  3. It truly was a beautiful evening. Thank you so much for inviting me to be part of it.

  4. I was so glad that you were there with me. ❤



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