One of the articles making the rounds is “How My Mother and I Became Chinese Propaganda.”
While the headline doesn’t sound like it’s going to be about care work, it’s the story of a reporter’s struggle to ensure her mother, who is in residential care, would keep getting 24/7 support from her private aide during lockdown.
It’s a story quite a few of you have been living.
The thing that struck me was how Jiayang Fan, the author, described her mother’s response to being diagnosed with ALS. It was implicitly understood that the diagnosis would be a secret because of the infectious shame it carried.
When discussing the details with anyone—a friend, a stranger, an insurance rep—I’m afraid of “losing face.” The phrase comes from Chinese, but the English inadequately conveys the importance of mianzi—self-respect, social standing—which Lu Xun, the father of modern Chinese literature, described as the “guiding principle of the Chinese mind.”
My mother has always knelt at the altar of mianzi, an aspiration of which A.L.S. makes a spectacular mockery.
The crime that brought the ire of the internet down on her is that by appealing for help on Twitter — and exposing her need for care — she betrayed her mother. As a young woman who left China as a child and who writes critical articles of it as an American citizen, she has also betrayed her country.
Jiayang Fan’s passport from when she came to the US with her mother. via Twitter
I can attest that plenty of Americans view leaving America and criticizing its healthcare system as treason.
There is a particular way you get to know people when you’re a stranger.
People who might tell you they’re intensely private will unload their woes and secrets onto me at the first opportunity if they happen to sit next to me on the train. Their secrets are safe, since I’m not connected to anyone whose opinion of them might matter.
The things I learn about care work from these confessional conversations with strangers are so much more insightful than anything that’s come out of the formal interviews I’ve set up.
This is why I decided not to devise a more formal research project on care work, at least not yet. The sort of research that gets funded demands you know what you’re looking for. In the beginning I thought I knew what I was looking for and I’m grateful to have had the opportunity to be proven wrong.
I have learned so much by talking to strangers, none of which would have been elicited from an interview with a list of questions approved by an IRB. None of which I would have ever known to ask about when I started this. None of which someone would have answered honestly when talking to an expert.
In 1957 Betty Friedan surveyed her former classmates ahead of their 15 year Smith College reunion.
“The anxiety, the sexual frustration, the hopelessness and depression — the real feelings of real housewives stood in stark contrast to the images of happy women in happy suburbs churned out by the media. This was post-war America: the Space Race, record growth and smiling children on the drive (source).”
When someone tells me they don’t know any other caregivers I note to myself that this person knows people who save face.
They live in the social isolation of acquaintanceships, Facebook friends, and coworkers. Their personal interactions that are no more accurate than our curated social media feeds. They have the kind of relationships where 30 years of friendly chit chat have provided only the barest contours of a person.
It fascinates me when the people saying this are in my friend group. Do they not know that the friend in Florida is there to take care of her mother as she recovers from surgery and not for a vacation?
Her Instagram posts show her on the beach.
I am the type of person who sets strangers at ease by divulging a little too much. I am a bit crass, a bit too loud, and full of little quips and anecdotes.
When someone did something a little embarrassing at a party I’d joke that I used to feel shame, but now I realize every bit of my dignity I lose brings me that much closer to freedom. Depending on the context, I’d pull out some story or another that would fit into Seventeen Traumarama! if it hadn’t needed to get past editors. I’d end with “and one day I’ll shit my pants in public and then I’ll truly be free.”
What I hadn’t anticipated was that, more often than not, this would be followed by the listener telling me about the time they shit their pants in public.
I once used this routine at a party where the conversation stopped and each person told a story about shitting their pants in public and I actually felt like an outlier for not having shit my pants in public.
I am pretty sure no one walked into that party knowing that was something they all shared in common.
I’m trying to get better about having actual conversations instead of performing, but it’s nice to know just how not big a deal embarassing moments are. How can we feel such shame about something that’s an almost universal human expeirence?
What does it mean to save face?
For me, Jiayang Fan’s story brings up a deep sadness for her and her mother. Keeping ALS a secret for so long required cutting off all meaningful connection with friends and family. In order to save face they needed to go it alone.
The article presented this concept as an aspect of Chinese culture, but there are similar concepts in Western culture.
How many of us have learned that someone who drifted out of our social world had done so to hide a degenerative disease?
How many of us have been shocked to discover a friend was disabled or caregiving or both and we had somehow not know this about them?
How many of you have kept your care work and the status of someone else’s health a secret?
How many short illnesses and sudden deaths were actually preceded by a lengthy secret illness?
Adrienne’s husband kept his illness a secret until the very end. He never looked sick.
When people in rideshares, on busses, in airports tell me things, I wonder if their spouses and children and parents and best friends and close friends know what they’re telling me.
Sometimes I ask. Asking usually ends the conversation.
Back when we had self-hosted forums, people would write epic posts explaining their current situation and everything in their life that led to it in a long feelings dump. Ostensibly they posted asking for advice and many of our members would respond with thoughtful replies.
The backend data made it clear that it was rare for these first-time posters to return to view any of the answers. They hadn’t navigated the registration process and spent time writing the post for advice or reassurance or any of the reasons I might have imagined. There was something else driving their actions.
There are many reasons why people create these boundaries in their relationships.
People sometimes don’t disclose a diagnosis or care role to coworkers because they worry about getting fired or simply being treated differently.
People often don’t disclose their diagnosis to their children or elderly parents in order to protect someone from what they fear knowledge might do to them.
People downplay things to friends because it’s so hard to get out of the house, they want to enjoy a few hours of things feeling normal. They don’t want to be pitied or have to answer questions about how someone else is doing.
So many articles on caregiver burnout assume that caregivers don’t know how to establish and maintain boundaries, but it’s obvious to anyone paying attention that caregivers are masters at boundaries.
Caregivers put boundaries on their friendships, their careers, their hobbies, on every aspect of their lives.
They have no problem saying “no” or avoding the ask entirely, especially to things that interfere with their ability to provide support and maintain their privacy.
The experts are seeing what they went out expecting to find. They are solving the problems they think need solving. Caregivers are telling them what they think they’re supposed to tell them.
This has me crying. Ten years have passed since I willingly and lovingly gave up ‘me’ to become his, and now, their, caregiver. I have offloaded on a random stranger, I’ve said out loud things I think are ‘going to far’ or those thoughts of ‘my life’ after my caring role is over. The oxymoron of paying a carer or support person to be with my mum while I go out and care for someone else’s mum to earn a little money. I now have one entering dementia and full disability and the other at 45 entering palliative care needs. I feel swamped by the emotions, the hugeness of what’s to come and it scares me, but sometimes a get BBC a shiver if anticipation. One, I will be a free solo person, two, the intense chronic pain they both experience is heartbreaking to see day and night. The indignity of needing me to wipe or wash bottoms and no longer be the daughter or wife, but the nurse, the cleaner, cook, feeder, decision maker, carer, responsible person. Every single simple decision, every single day, 360ish days a year, I plan, shop, prepare, cook and clean up after. But hey, I’m not worthy of an income, or superannuation, sick leave or holidays. It’s just how it is, for now.
Perhaps some of us are just private. Perhaps we do share when we are in a "safe space." I wish more caregivers had a safe space such I have - my local Parkinson's Support Group. I thank them every chance I get!