One track mind
All thoughts lead to care work
I’m feeling a little scattered this week, so instead of trying to weave together a coherent narrative, I’m going to share what’s on my mind and in the media.
Leah Libresco Sargeant reminds us that being a burden isn’t inherently bad. Of course, many of us would prefer the responsibility of care work to not having someone here with us.
There are also the burdens we freely, and eagerly, taken on. What are pets, children, and gardens other than burdens we cheerfully choose and commit to? As so many people mention when writing about the commitment of marriage, sometimes the sacrifice is the point and is an essential part of the joy.
Ibram X. Kendi had Rebecca Cokley on his podcast to discuss the intersections of ableism and racism in America. Since I’ve been exploring the history of caregiving (and thus the history of disability) I’ve discovered that nearly every “hm, I wonder why it’s that way” ends with eugenics.
Marie Trotter was discussing spiritual journeys when she captured the magic of hearing someone share their story:
“The sharing of words between persons, the everyday use of language, is so ordinary that I’m not always conscious of its sacred power. Asking someone to tell you their story is to invite echoes of the work of our Creator. It’s an intimate, immediate encounter, quite different from reading the edited life of a stranger in a book.”
…
“Ultimately, hearing from fellow sojourners helped me accept my own spiritual journey as an ongoing narrative lacking a neat conclusion.”
She captures the power of discussing our experiences with care work, why I miss the sense of connection that comes from having strangers on the bus tell me about their experiences, and why the writings of so many smart caregiving coaches leave me cold.
One of the things that baffles me is how medical centers seem so poorly designed for patients. The whole experience is awful, even setting aside the emotions of whatever has brought us to a medical center. The lighting is migraine inducing. They’re impossible to navigate. They lack space for mobility devices and are full of obstacles. Patients are woken up hourly, which is considered torture under other circumstances. And the noise. Sen Sound is trying to get medical centers to adopt a soundscape that’s less torturous.
Where have you seen discussions of care work in the media that go beyond top tips and poltical debates? Feel free to share links in the comments.
I just had a phone conversation with my daughter: her husband arrived home yesterday after 3 months in rehab following his hemorrhagic stroke. And now she finds herself living in a house that is not her home anymore. Steve is unable to achieve anything on his own and the aide appears to lack the skills necessary to care for someone so debilitated. This will work itself out. One way or another. And as her mother and a caregiver to my husband, I still lack the right words to hand her that might ease her plight. Where in the media is information like this? We have our own Caregiver Space Communities but more often than not the advice we receive come from others in our position. They, too, have floundered and are finding their way. It seems to me that we need our own "Sanjay Gupta of caregivers" to help those of us in emotional turmoil. If more information was shared through the media the world might begin to understand the caregiver's plight. It is more than financial; it is emotional, spiritual and physical.