Isolation Is a Care Language

The author, wearing a mask, staring into the camera from their car.

On a typical day, I wake up alone, set my own agenda for the day (a webinar or two, maybe a meeting, household tasks, some writing or research…), prepare and consume most of my meals alone, and return to bed on my terms because I do it — you guessed it — alone. This may sound odd, given that I have a domestic partner and a kiddo who is here more often than not, but I think we all spend less time together now than we did before the pandemic. I think we have to. My partner is a pretty extreme introvert who, in addition to working in a helping profession (requiring her hard-won emotional intelligence be plied for hours at a time in the same room where she sleeps) is an emotional and logistical anchor for me and Kiddo much of the time. We also have, between the three of us, some low-key chronic ailments and some high-key neurodivergence, so the ability to hole up in our own spaces and not trip over each other is essential if we are to enjoy the time we do spend together. It is a privilege to have enough space to each have our own bedroom (and this house is the big reason why the pandemic has meant staying here instead of starting over somewhere else after grad school), but anyone can feel underfoot after 729 days of hiding from the rest of the world. Sometimes it’s hard, and it can definitely be lonely, but I yield to the needs of the people with whom I share space because their wellness is important to me, and we all limit our outings because we value our health and the health of others in our community.

I’m coming to terms with the fact that many people are not as capable of — nor interested in — yielding to the needs of those with whom they share space. Whether this attitude is attributable to denial or failures of logic or failures of messaging — does it even matter any longer? Our public health systems have failed to cohere against the very things they purport to prevent, so any chance we have to survive is more likely to come from having (or building) small, reliable support systems whose members sacrifice for one another and whose survival is interconnected. Although large cities have seen some success with building and sustaining mutual-aid projects, the vast majority of us will not be able to rely on geography alone to find like-minded support. Though I am disappointed, I cannot be surprised; my experience with dementia caregiving taught me the same things, albeit on a smaller scale.

If you’ve heard my story, you’ve probably recognized that I went to graduate school in order to intellectualize my years caring for my adoptive grandfather: the burnout, the gender wiggles, and of course the recovery, but in particular the isolation. How, with 500 Face-friends, dozens of colleagues, a local and opinionated fam-o, and a chosen family of nearly a decade, did I end up facing so much of his illness by myself? I assumed it was because of my youth: most dementia care partners look after spouses or parents, have raised children, and are retired or at least planning to do so. People in their 30s and 40s can’t to relate to sidelining a career in someone else’s interest, and many don’t want to be confronted with a condition they fear and misunderstand.

Reading care statistics — as well as facilitating the same dementia support groups I had once attended — has shown me otherwise. Whether or not my hypotheses were accurate, they could not account for all the isolation being reported by care partners of other ages and experience levels. Even those with large, invested families report feeling left out, overlooked, and unsupported. If there is anything that protects against isolation, it’s coming from communities who already know how to band together through adversity — usually some combination of marginalized, interdependent, and highly religious, which were not strong suits for me or for most white people in the U.S. For all the arguing over “family values” in politics, entertainment, and over our own holiday feasts, how many of us actually know what sacrifice looks like outside of raising kids and making money?

Increasingly, especially since I wrote in my Master’s Thesis, I see care partners as separated from society not by our circumstances so much as by our belief that these circumstances should be allowed to alter our societal role. This is especially true when the care partner and/or the person receiving care are NOT elderly (already a growing segment of the disabled and care population before COVID-19). When one or both are supposed to still be part of the workforce, we don’t know where to put them in our minds because there is no place to put them in this society. There are no dementia villages where people with dementia and their adult grandchildren can shelter together for a few years, no kickback for care partners who have reduced their loved one’s medical expenses, no FMLA-type policy that accounts for a gradual reduction or reintroduction of work responsibilities. If we step back or step away from our careers to give care, we run the risk of having to start all over again with our financial, emotional, and intellectual resources depleted (no wonder so many of us are trying to scrape together a living just coaching others through the same circumstances).

In short, caregivers can give you all the evidence you need: people do not care about care.

Two years ago, I wrote that we were all caregivers as long as we put the needs of others ahead of ourselves; what I left out was that walking this path was probably going to isolate us sooner or later. Not because staying home can be lonely (though sometimes, yes), not because wearing a mask creates emotional distance from strangers and friends alike (is this even true?), but because the devotion to others’ wellness is out of place. It isn’t deviant enough to be criminalized, it isn’t photogenic enough to muster a lot of charity services, it’s just an awkward fit for this society, built on awkward language and half-measured responses.

I don’t want to end on a down note, but I don’t want to cushion this harsh concept, either. Many people with experience being marginalized have learned nothing new here (except perhaps that I count the days since my family went into near-isolation), but my hope is that those with experience caring even when it was inconvenient and those who are appalled at the recent surrender to “everyone will get it eventuallypolicies over COVID-19 will realize they have unlikely allies in those who already know what community is really about: it’s not about who you see on Sundays; it’s not about who you call for a cup of sugar; community is about those whose survival is materially connected with your own and the processes that deepen, strengthen, and coordinate such connections to make members stronger against what’s ahead.

A sizable portion of people in the U.S. have yet to contract the coronavirus (and some sizable chunk of those who have gotten it were careful yet unlucky). That tells me, just like the dementia care statistics I revisit annually, that there are far too many of us to be truly isolated. Whether because of our own vulnerable health, the health of a loved one, or a knowledge of public health that is actually matched by adaptation, many of us have continued doing our best despite diminishing support and no end of mixed signals. That’s not isolation, that’s a majority.

If you don’t have the bandwidth to do any more, just keep doing what you’re doing and being unashamed by those who want to ridicule you for caring. If you do have a little more time and energy, spend it checking on your immunocompromised or otherwise isolated friends; it’s never too late to start that mutual aid group, dinner delivery team, or driveway messaging program you wanted all the way back in 2020. If you have a lot more time and energy, spend it talking to your local, state, and federal officials and let them know that just because opposition is loud that does not mean it is numerous, powerful, or accurate. If you’re done with officials, take up some reading or skill-building and talk with your community about what you learn. If you find yourself wavering a little, look up the findings on what happened to the cities that did and did not take the influenza pandemic of 1918 seriously. If you’re tired, now’s a good time to rest and regroup; we’ll be lucky if we’re only halfway through the pandemic at this rate, but at least we have some calm to regroup before the next strain hits. If you’re wired, do something that brings you joy — I insist!

And if you’re lonely, call up a caregiver. I bet they know what you’re going through.


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