One of the things that gnaws at me a little is how much my life has drifted into routine as my illness has become more severe and I spend more time at home. I’ve never liked most routines. Systems, yes. Predictability and sameness, no. To the point where I’ve spent most of my life rearranging the furniture every six months.
I just made a furniture change last week, and I have some ideas for more changes that are bigger. I get fresh flowers maybe once a month or so, and that mixes things up in my sightlines. I’m thinking more about how to mix up my regular activities in the course of the day so I feel less bored.
Are there things you do to mix it up when you get bored?
I just finished this novel, and it was intense. It hurts to read. It hurts to imagine. And it hurts in moments where it is relatable, despite my culture and privilege differences from the characters.
Etaf tells a story of women’s obligation and pain through the lens of culture, specifically a Palestinian lens. A culture in which women’s lives are proscribed from birth to death.
The prologue begins:
I was born without a voice, one cold, overcast day in Brooklyn, New York. No one ever spoke of my condition. I did not know I was mute until years later, when I opened my mouth to ask for what I wanted and realized no one could hear me. Where I come from, voicelessness is the condition of my gender, as normal as the bosoms on a woman’s chest, as necessary as the next generation growing inside her belly. But we will never tell you this, of course. Where I come from, we’ve learned to conceal our condition. We’ve been taught to silence ourselves, that our silence will save us. It is only now, many years later, that I know this to be false. Only now, as I write this story, do I feel my voice coming.
Three generations of Palestinian women in America struggle with silence and expectation. Know that this silence is enforced again and again by violence and shaming by people who ostensibly should love them.
It is written in the style where different chapters are focused on different characters in different times, and it weaves together a story that is not understood completely until the end.
My social media feed is full of people who are truly disabled and can’t get access to SSI or SSDI. Anything that makes this harder is a problem.
This could go wrong in so many ways!
“But advocates for people with disabilities say the use of social media in this way would be dangerous because photos posted there do not always provide reliable evidence of a person’s current condition.
“It may be difficult to tell when a photograph was taken,” said Lisa D. Ekman, a lawyer who is the chairwoman of the Consortium for Citizens with Disabilities, a coalition of advocacy groups. “Just because someone posted a photograph of them golfing or going fishing in February of 2019 does not mean that the activity occurred in 2019.”
Moreover, people are more likely to post pictures of themselves when they are happy and healthy than when they are in a wheelchair or a hospital bed.”
Folks who are chronically ill and disabled are already saddled with being disbelieved that they are ill. As if being ill means that you aren’t human, that you might not have saved all your spoons for one night out, that you can’t ever do anything enjoyable!
I once had someone assert that I couldn’t have been ill because I clicked the “interested” button on a FB event post! Never mind I do that all the time to keep track of pipe dreams that I can rarely realize.
Pushing ourselves to complete a task is the most common pacing mistake most of us make.
“The next step is choosing a different action. Sometimes even with awareness, we can think, “I know I’m running out of energy, but I really want to get this done.” When this happens, it’s because our old programming is tempting us with an unconscious feeling that it will be better for us to continue; there’ll be some kind of reward. Our new knowledge––that it most certainly isn’t better for us to use too much energy––isn’t yet a strong enough neural pathway. Our subconscious doesn’t have as much evidence that it’s better for us to stop than we do for pushing through. In this case, we have to let go of our subconscious feeling that it will be better to keep going and make a conscious choice to do something different.”
This 👆. So hard to make the transition. Sometimes I can do it . Sometimes the sense of psychological satisfaction is too great and I push forward anyway.
Yaa Gyasi‘s novel “Homegoing” is a masterfully written historical novel. It begins in Ghana, and tells the story of the progression of two lines of a family tree over eight generations. One branch stays substantially in Ghana with a complex relationship with power and complicity with the slave trade. The other branch is sold into slavery in the United States. Each chapter is the story of a different family member, their context, dreams and struggles.
There are many very good books about race in the US available, and I have barely made a dent in my reading list. But I those I have read, this makes the short list of books I think should be required for white folks.
I missed the fanfare when it was first published, but it was recently brought to my attention through a conversation on Rachel Cargle’s Instagram. Rachel, and a couple of other black women I follow, have recently shared stories of personal pilgrimage to places like Cape Coast Castle in Ghana. They have shared a window into their experiences of standing in a place where their ancestors were held captive, tortured, treated worse than animals.
One conversation thread that I saw was about the pain black women were experiencing watching white people visit these places as tourists. A personal desire to have their own experience of grief and healing, without having to see people whose ancestors inflicted this violence. A few white women piped up, wanting to have their own experience of insight and understanding. They were encouraged that they could do that without making such a trip, and that one way to do that could be by reading “Homegoing.”
I think as white folks we are incredibly used to thinking that we have a right to be anywhere we want. That all spaces are ours. That is privilege and supremacy. We can learn to respect that some places and experiences are not ours to have. And be grateful when people of color choose to share their stories and perspectives with us to empathize and learn from. I’m grateful for what Yaa Gyasi has shared here. Her story will stay with me for a long time.
Thanks to a friend for sharing this essay by Alaina Leary. She covers a lot of ground for ways friends and family can be supportive. This is one of my favorite parts: “Once I realized I wasn’t going to get better, I could finally work toward accepting that — living my best life withinmy body’s limits.Accepting those limits, though, is a grieving process for most of us. But it’s one that’s made easier when we have supportive friends and family by our side.Sometimes it can be easier to throw positive platitudes and well wishes at a situation. Truly empathizing with someone who’s going through a really difficult time — whether that’s a disability or the loss of a loved one or surviving trauma — is hard to do.
Empathizing requires us to sit with someone where they are, even if the place they are is dark and terrifying. Sometimes, it means sitting with the discomfort of knowing you can’t “fix” things.”
I just finished my first pass with Layla Saad’s “Me and White Supremacy Workbook.” I say first pass, because this book needs to be worked more than once. At its core, the workbook consists of 28 sets of writing prompts developed to explore 28 aspects of ways that white presenting folks can be complicit in white supremacy. The book demands thoughtfulness, honesty, and a willingness to delve below the surface. A willingness to be uncomfortable with what you find.
The book is designed to be worked on your own, but also provides a method for reviewing and sharing that work in a circle with others. I had the opportunity to do this with a group of women, and we just finished our fifth and last circle together. It was powerful. I learned so much from their reflections on their own lives, some things that were totally different from anything in my life, and some things that I related to but hadn’t yet thought of on my own. I’m really grateful for that experience.
I’m also grateful that I could find a way to have that experience as someone who is housebound and bed-tethered. It is so hard for me to meet new people, and almost unheard of for me to participate in a group experience. I was hopeful that I would be able to join this group of local women via video conference, but instead, the group decided to come to my home each time and to help clean up after each circle. It was such a rich experience for me, and I think it was rich for them.
I’m struggling with the knowledge that being anti-racist requires me to do work in the world, while being someone with severe chronic illness, disability, and major limitations. I’m exploring what this can look like in *my* context in the world, and I’m beginning to find other folks online who are grappling with the same set of questions. If you are someone who is also in that boat, I’d love to hear from you.
The “Me and White Supremacy Workbook” is available to download for free from Layla’s website. While she has intentionally chosen to make this resource available without charge, there is also a PayPal link available to make a donation for her work. For even more ways to connect with her, check her out on Patreon, Instagram, the Good Ancestor podcast, or subscribe to her mailing list.
This book tells the story of the Los Angeles Central Library, with a special focus on the fire that closed it for six years (and a bizarre investigation). Interspersed, are lots of sometimes quirky and sometimes useful facts about libraries past, present and future.
I read an ebook version from my local library, the Tompkins County Public Library (I also often get ebooks from the New York Public Library). I found the book generally fascinating, and it reinforced my appreciation for libraries and their roles in a community. It has me thinking more again about how libraries are one of the few public spaces outside capitalism. And renewed my interest in other types of resource sharing systems. Like here in Ithaca we have a toy library. And I’ve long thought it would be great to have a neighborhood resource sharing registry, like how many Bundt pans does a neighborhood need?
Do you use your library? Do you use any other kind of resource sharing?