Writing and caregiving are the warp and weft of my day. They work together, each supporting the other. I write even in bed beside Colby and can feel some autonomy. I care for her vulnerable body and her indefatigable soul and know that we are capable of more love and endurance than we know which helps me keep writing when it gets hard. Early this morning she wanted company. I wrote with the partial concentration of morning and simultaneously chatted about the things that make Colby laugh. It all equals a life, a fabric big enough to hold all of it.
Here’s a thought, on money: it matters to the creative process.
I was thinking about my (draft) manuscript and the MacDowell Fellowship. A significant part of pursuing my writing goals is thanks to sobriety. And a significant part is due to being helped out of debt and supported by community through Colby’s last surgery.
We try to live on so little, the “safety net” of American social services. It’s a system deeply, intrinsically rooted in white supremacy, bootstrap policies. But my point for this post is, I didn’t get to this embryonic juncture with my writing by only hard work and ability. It has everything, everything to do with you, with community.
The community that helped us get out of a long debt we weren’t going to earn our way out of with a suddenly very fixed income, once we both committed to Colby’s full time care. The community that was so generous we made it all the way through a 5 month medical crisis with ZERO debt. That is extraordinary.
And here’s what I know: being out of debt, not solvent but not drowning, opens up a lot of mental and emotional space. It opens up space to dream and hope and plan. The support we have received from the community of people invested in the dignity of Colby’s life, you have enabled me to pursue the work of sharing our experience more widely, through writing.
I have big goals for this book. I hope to add to cultural healing by telling my truth as I know it. A deeply considered life is a profound privilege. And one that your generosity has enabled. You are part of every page written. You are part of the MacDowell Fellowship. You are part of the joy of every damn day. Thank you.
She did it again. Held the seizures off until the party was over. This afternoon she had one but not before she had a big meal and a nice bath. Then it’s like she says, alright, let’s get this over with. And boom. The neuro tsunami. Every damn time, after how many thousands of seizures, I wonder what she experiences. All we can do is meet it all with an open heart. I know what that feels like. And I know she does too.
I haven’t shared much about the surreal reality of the legal process to be Colby’s guardian after age 18. Families who have cared for a child their whole lives have to pay a lawyer, get fingerprinted and background checked, and go before a judge in order to maintain the ability to advocate for their child. It is expensive and so American in its undergirding of fear. However, our lawyer and the judge overseeing the case are warm, wonderful people and the experience managed to feel like love.