Jason and I have had a brief hiatus and are back this week with Christy Shake, a writer, blogger, epilepsy advocate and champion of medical marijuana. Originally from the Seattle area, Christy came to Maine with her partner, professor and photographer Michael Kolster, by way of San Francisco where she had begun a successful career as an apparel designer. The birth of their son Calvin, now fifteen, required Christy to surrender her profession in order to care for him. Within weeks of Calvin’s complicated and fraught birth, she began writing about the experience. In 2010 she launched her blog, Calvin’s Story, in which she explores, among other things, motherhood, disability, epilepsy, medical cannabis, loss, grief, bigotry and injustice. She, Michael and Calvin live in Brunswick, Maine with their wackadoodle, Smellie.
In today's podcast Christy speaks honestly about the grit of parenting a child with significant disabilities even as she sheds light on the grace of it all. While she admits to the great losses she's experienced in career and general mobility and freedom, she speaks highly of her supportive community and the supports Calvin receives through a Medicaid program in Maine. Calvin is Michael and Christy's only child, so Christy shared her ambivalent feelings about that being "both blessing and curse." I confess to feeling a tweak of anxiety about the fact that I HAVE been stretched thin raising two "typical children," as well as Sophie, as Christy intimated. These are the kinds of discussions, though, that shed light on areas of caregiving that we ordinarily don't hear much about, and I am grateful to Christy for voicing her thoughts so transparently.
Jason, Christy and I shared our own experiences when we've "behaved badly," pushed to the limits of our abilities and patience to parent and be a caregiver. We agreed that while there might be a saint out there who doesn't break every now and then, being honest and compassionate with ourselves when we do have difficult moments is an important coping skill. Christy shared that one of the main reasons she is so honest in her writing and sharing of her experiences as a caregiver is that "beyond the fact that it's therapeutic for me, I think it helps people realize they're not alone."
We also talked about people's reactions to Christy's honesty and the rare kickback she might get about being "negative" or "depressing." Overall, though, it's mostly support and fellowship she hears from her readers. Christy also shared her larger purpose in writing and sharing her experiences. "I want to inspire empathy. I don't just want people to know that they're not alone. But I want to inspire empathy in the world, for people to understand other people, people's situations, whether it be disabled mothers, or immigrants, or people of color, or LGBTQ, whatever sort of challenge that you have in your life in this strange sort of messed up world that we're living in right now. I really want people to feel empathy for one another. And I don't know that we can do that unless we tell our stories. Honestly."
We know you'll find much to relate to during this podcast and hope you'll join the conversation here in the comments or on our Facebook page.
In addition to her blog, you can find Christy's work published in The Sun magazine, Ladybud magazine, On Being and The Mighty. This year, she is aiming to get back to working on her neglected memoir.
PURCHASE < $100
Rechargeable batteries for the baby monitor
Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey by James Reston, Jr.
The Reason I Jump:The Inner Voice of a Thirteen-Year-Old Boy with Autism by Naoki Higashida
A Life Beyond Reason: A Father's Memoir by Chris Gabbard
The Still Point of the Returning World by Emily Rapp
MOST INSPIRATIONAL PERSON/GROUP
Susan Axelrod, the founder of CURE