I Will Keep Living, Dammit
Romanticizing my life as a path to rebellious joy
January always feels like changing the sheets to me:
I walk into it fresh, invigorated at the new year feeling, ready to accomplish great things.
And then, without fail, I run into the same wall every year:
January health insurance.
If you have a chronic illness, you probably know this feeling well—the crushing knowledge that your deductible reset, along with the exhaustion of having to make sure everything is set up to save as much money as possible by some combination of grants, assistance, clever corner-cutting, and midnight spell casting. Or your rare, expensive medications have all run out of their prior authorizations, and you have to make sure they go through again quickly enough that you don’t run out.
Somehow, even when my insurance doesn’t change, there is always so much to do in January. Without fail, something has gone wrong, some company has messed up their paperwork or changed their policies or found some other way to screw me over, and I must spend hours on the phone getting it all sorted out.
This year has been especially brutal. Over the last 2.5 weeks, I’ve logged more than 17 hours of phone time and more hours of online chatting, research, and paperwork, trying to untangle a truly epic and epically ridiculous insurance mess that is holding up all my medical care but has no easy solution and, therefore, no human in the world besides me who is motivated to get it taken care of. Over and over I’ve had customer service reps patronize me, verbally shrug their shoulders and tell me there’s nothing they can do, and punt me off to yet more people. It’s been rough, even by my January standards.
One afternoon last week, after logging hours on the phone ranting and begging for somebody, anybody, to do their job and fix the utterly bizarre accounting problem that has resulted in my insurance trying to make me pay my $5,500 annual deductible a second time this month1, I hit a dark place mentally. Is it even worth it, I wondered, to be alive, if this is what being alive takes? If all my time and all my energy are used up begging uncaring corporations to please, please not let me die—what is the point of living? Wouldn’t it be better, or at least easier, to just… go gentle into that good night? Give up and set the clock back a hundred years, to an era in which people with cystic fibrosis died within their first five years?
In the last few days of 2024, I took a hike with my daughter. We rambled over hills (okay, I panted like I was dying, she rambled), climbed big rocks (…again, her), snapped pictures, hunted mushrooms, sang loudly in one place where a sign reported a mountain lion had been spotted recently. (Can I confess that as much as I love the wild, I am terrified of mountain lions?!) It was just what I needed in that liminal between-Christmas-and-New-Year’s space of indulgence and indolence; the fresh air was bracing and enlivening, the silence gentle, the afternoon twilight calming. I’ve had more joint problems than normal this winter, and my nature walks have been very few and far between. It felt good to get out there, even if it did hurt my knees.
As we walked, I found myself thinking: This is what I need to hold on to. This good, clean, joyful light. And when we made it back home that evening, I had one single resolution-shaped idea in my head:
This year, no matter what comes, I will not let that man take from me one more moment of my joy and my rest2.
I’ve talked a lot about the burnout and trauma I experienced after throwing myself into political advocacy in 2017 and 2018. I spent those years engaged in activism, leaning into my deep belief that when we share vulnerable truths with one another, we help others care. I campaigned for healthcare protections as Congress and the president attempted to systematically dismantle all of the laws that made insurance available for people like me. I shared my story over and over again, laid myself on the altar, opened up every bit of my soft heart, begging please, please care.
Many good things came from that. I’ve had several people reach out and tell me that my storytelling and advocacy work changed their perspective, caused them to vote differently, helped get them involved in their own activism. But an equal number of very hard things came from it, as well. I was repeatedly attacked by people I loved deeply, who I thought had my back. I became estranged from many who I thought were my ride-or-die beloveds, a situation that was greatly worsened by the advocacy work I did in 2020 to try to help people understand the life of an immunocompromised patient in a global pandemic. I’m proud of the work I’ve done, and I’m glad I did it. But today, if somebody asks me something about health insurance, I’m more likely to burst into tears than to be able to answer.
As 2024 marched forward and it became ever more likely that the next presidential administration was once again going to put healthcare for vulnerable people on the chopping block, I alternated between numbness, anger, despair, nihilism, and putting my head in the sand. I kept thinking I can’t do it. I can’t go back to begging for my life on the internet again.
One thing that I have come back and back to in the past few years is something I have learned from studying successful social justice movements: the Civil Rights movement of the 60s and 70s; the disability rights movement of the 90s; the LGBT movements of the past several decades.
Joy is a radical act.
I’ve noticed that white liberals tend to approach resistance and protest with passionate anger. Sometimes it feels like the anger itself becomes the protest—we are so eager not to normalize the abnormal that we hold tightly to the rage, the disappointment, the despair, until joy or lightness feel like a betrayal of our ideals. I’ve seen white liberals openly castigate others for making jokes or promoting their books or talking about ways they were bringing joy into their lives—as though being happy in the face of totalitarianism is a tacit endorsement.
I think that is not only wrong, but dangerously unsustainable. I think often of the March series of graphic novels by Senator John Lewis, a hero of the Civil Rights movement. (If you haven’t read it yet, please move it to the top of your TBR!) I was struck when I read it several years ago by the way he describes the multifaceted resistance of the activists involved in that movement: they would go to church and sing together, or have a pot-luck dinner as a community with laughter and love, and then they would go march or sit-in or protest. Always, they gave time and weight to moments of connection, of lightness, of planning, of joy.
This is a pattern I’ve seen echoed across every successful protest movement I’ve studied. Successful activists take to the streets and make good trouble, yes; but they also build community, they spend time with the ones they love, they eat good food, they make sure they’re not trying to draw from an empty well.
I’ve spent the last month, since that hike with Kitty, trying to figure out how, exactly, I was going to hold on to my joy and my rest in 2025, given the firehose of awful that has already begun. And finally, after I hit the rockiest of bottoms last week working on this insurance issue, I decided:
I’m going to romanticize the shit out of my life.3
“Romanticizing my life” has become a meme on the internet in the last few years—the idea that joy can be found in unabashedly dwelling on the small pleasures, the mundane magic of our everyday. The hiss and flare of a lit candle. The steamy warmth of a hot bath at the end of the day. The immersion in a good book. The pop of delight you get wearing an outfit you really, really love. The taste of a favorite food. The comfort of a warm drink on a cold day. The embrace of beautiful music. The twinkle of fairy lights. The delight of throwing a party for two, or three, or one, just because you feel like it.
If you’ve followed me for very long at all, you’ll probably know that this has been a big part of my online presence since long before the phrase “romanticizing my life” came into being. From the earliest days of my blogging, I’ve been capturing exactly this idea: that no matter what hurricane rages outside your door, it’s the small, simple things that have the capability of creating a quiet eye in which you can dwell. On my old blog, Being Cindy, I used to have on my header a quote from Madeleine L’Engle: “If there is to be any peace, or reason, we have to create it in our own hearts and homes.”
That quote comes from L’Engle’s book A Swiftly Tilting Planet, a weird and wonderful fantasy novel that begins during a family dinner at which a call is received indicating that the United States might be on the brink of a nuclear event with Russia. The book, published in 1978 at the height of the Cold War, is suffused with the sense that everyone is on the brink of destruction—that the dinner in question, held by candlelight among beloved family, might be the last one they’ll ever experience. This is the darkness and fear into which this quote is spoken: a fierce insistence that, even in the face of annihilation, there is meaning in creating our own small haven of peace, meaning in our small moments of connection and delight. Candles in the dark. Prayers sung around a dinner table. Bread, broken together.
This idea—the idea the internet eventually came to think of as “romanticizing my life”—became important to me in high school, when I had a severe case of mono that eventually turned into me/cfs and a constellations of symptoms much like long Covid patients are experiencing today. I spent nearly a year fully in bed, and many years after that slowly regaining strength and function. In the years when I was at my very most limited, I discovered the power I had to create my own peace and reason within myself, no matter how out of control my physical life had become. One flower admired, one sunny day appreciated, at time, I built beauty and joy out of pain and limitation.
To live in a body like mine is a political act. Throughout all of history, there have been movements to rid society of people like me: “ugly laws” meant to prevent people from having to look upon those of us who use mobility aids or who are visibly deformed; eugenics programs that forcibly sterilized or euthanized people with disabilities or illness. The first recorded indication of cystic fibrosis in history is a medieval German proverb alleging that the child “whose brow is salty when kissed” has been cursed by a witch—a common explanation for illness and disability at the time, and one which often led to disabled people and their families being viewed with suspicion or hostility.
Even now, in our enlightened modern age, much of the infrastructure of modern health care—like the arduous U.S. health insurance world that I’ve been so mired in fighting this month—is set up to enrich shareholders and cut costs. Costs, of course, in the form of expensive and complex patients like me. People in this country and other countries die every year for lack of health care and resources; for the lack of ability to navigate a complex system that is designed to weed us out, not to protect us.
To live in a body like mine is a political act. And this month, as I have sat in both my personal health insurance hell and the larger political hellscape around me, I have kept coming back to this idea:
To live in a body like mine with joy is a radical act.
It is radical to continue to take up space, to insist that I deserve not only life, but liberty and happiness. It is radical to refuse to let bloated oligarchs who would rather people like me “die, and decrease the surplus population” to fill me with despair. It is radical to believe that I am worthy of gentleness, worthy of joy.
For all of us who live in marginalized bodies—those of us who are disabled; Indigenous people; people of color; trans and nonbinary people; those of us who are queer—for all of us, living with joy is a radical act.
This is not breaking news, of course. This is a lesson that has been taught to me, over and over, by other activists over the years—both the historical activists I’ve studied, and modern activists (especially Black women) who have helped to educate me on how to do advocacy work in as healthy and meaningful a way as possible. Centuries of activists before me have recognized the subversive nature of joy, as well as the necessity of connection, community, and celebration as a component of organized activism.
But it has taken me these years of brokenness and burnout to really get it. To get to the place where I have sunk so deep, I have no more despair to give. To be so close to giving up that it feels I have nothing left to lose.
And it’s in that place, that dark and lonely place, that I’ve found myself recommitting to living with radical, rebellious joy.
This year, I’ll be speaking up about atrocities and sharing action steps. I’ll be meeting with politicians and finding ways to make a difference.
But I’ll also be baking bread. I’ll be painting and writing and embroidering and crocheting. I’ll be growing my garden and homeschooling my kid. I’ll be lighting candles in the darkness and singing songs and eating good food. I’ll be taking pictures of all of it, to remind myself that there are just as many bright moments as there are dark ones.
Because this life of mine—living with a disease that was expected to kill me by now, that promised to take away my chance for motherhood and my author career and everything I’ve ever dreamed of—is a miracle. My aliveness is a miracle. My joy is a miracle. It is how I resist, how I persist.
And I am not giving up.
If you’re reading this and about to jump in with health insurance advice, I love you, but please don’t. This is a very bizarre and unusual issue that takes close to 10 minutes to explain, and it has baffled every doctor, pharmacist, and insurance rep I’ve talked to. It’s not a regular kind of insurance problem, and regular solutions have had no effect, and I don’t really have the spoons to explain it all again in detail, sorry. ;)
You know what man I mean. You know.
Sorry for the language, Mom.
Cindy, this is beautiful. Sending love to you ❤️🩹
You can use whatever language you want. 😘 In fact this situation makes me want to swear at some people for you!