Nevertheless, Persisting

Welcome to NEVERTHELESS, PERSISTING

Have you ever looked back on a moment and known that’s when everything changed? Now in my 5th decade on earth, I’ve learned that several such moments occur throughout life. For me, a fateful decision to honor a commitment is simply the latest.

On March 10, 2020, I boarded a flight bound for Des Moines, Iowa. I boarded that flight despite the fact that mere minutes before, my employer had banned employee travel due to the emerging COVID-19 pandemic. I boarded that flight with my boss’s blessing because I’d made a professional commitment and I intended to honor it. I boarded that flight and along the way, picked up a companion I haven’t managed to shake: a virus described by some as innocuous, nothing more than a nuisance, a cold, no reason to change business-as-usual. I boarded that flight and I’ve been suffering from Long COVID ever since.

In the years since I became host to the viral squatters who refuse to leave my body, I went from an active, deeply engaged woman at the height of her career to a person who on most days is quite certain she's been buried alive, left to live out her days suffocating unheard while the world carries on. I sleep 10-15 hours a day and still feel exhausted all the time. There's a dense fog that lingers in my brain, dissipating for only the few hours a day a magic pill whooshes it away. I've been almost consistently nauseous for over a year. I've had to fight to keep my job and medical insurance. I've been misdiagnosed countless times.

I still meet medical professionals who have never heard of my condition. And yet over 17 million Americans are afflicted. Globally, the cumulative incidence of Long COVID is estimated to be around 400 million people with an economic impact of $1 trillion, or 1% of the global economy.

So, is NEVERTHELESS, PERSISTING about Long COVID? Yes and no. You see, for me, Long COVID has changed everything. I can’t un-see the world from the perspective that Long COVID provides. I can’t un-learn the lessons of Long COVID. I can’t un-live the experiences of Long COVID. And I want to share all those things. They are worthy of light. There are millions of us suffering and too many in the dark about our condition.

And too, I boarded that flight in 2020 on a years-long continuing mission, with knowledge and a perspective to share. I’m a public sociologist. I work hard to spread the gospel of sociology because I believe that if more people saw the world, their worlds, through a sociological lens, we'd all be better off. It really could change everything.

I didn’t come to see the world through this lens via our usual mechanisms of socialization because we don't learn this perspective through our usual mechanisms of socialization. We don't tend to notice how deeply social forces shape our lives. As the saying goes, fish are the last to notice water because they’re immersed in it. We’re often not aware how much we, as individuals, lack power. Not knowing keeps us doing our work; cogs in the machine. Not knowing keeps us from seeking meaningful change, from breaking the machine or - gasp! - from building a better one.

It’s not that all individuals lack power. It’s that too few have it all and too many have none. Sociology helped me understand that. It has also helped me understand that we, as individuals, are not entirely powerless. We can change the system. We just have to notice it first. And we have to take care of ourselves in the process.

So what is NEVERTHELESS, PERSISTING about? It’s my way of sharing a perspective that I think more people need and can benefit from. It’s inspired by my experience with Long COVID because that happens to be the most recent moment in my life that changed everything. But at its heart, NEVERTHELESS, PERSISTING is simply the next step along my years-long journey to use what power or influence I’ve been lucky enough to collect to shed light on the variety of ways individual lives are shaped by social forces.

Why the name NEVERTHELESS, PERSISTING? For some readers, the phrase will call up visions of a 2017 Senator Elizabeth Warren persisting through a speech over Senator Mitch McConnell’s protestations. McConnell's description of the event went viral and that’s when everything changed. “Nevertheless, she persisted” became the rallying cry of the modern day feminist movement. The phrase became a symbol of all that women have persisted through and of the all-too-familiar experience of being shushed, silenced, or ignored.

“Nevertheless, she persisted” began as a single moment but came to represent persistence through harassment, inequality, and injustice across time and place. A moment you look back on and know that’s when everything changed. NEVERTHELESS, PERSISTING is a riff on the phrase. Though inspired by a different moment, the newsletter title, like the original phrase itself, pays homage to the significance of a moment and of persisting through others’ attempts to ignore, brush aside, or silence. It’s also feisty and has a bit of a give-no-fucks/take-no prisoners ring to it and that suits me just fine.

I love the adage, “If you don’t have a seat at the table, you’re probably on the menu.” Yes, Elizabeth Warren said it once but others have said it too. Having a seat is as critical as understanding that there's often little space in the current design to add more chairs to the table in the first place. Well, pull up a seat and let's make some room.

About Amy Blackstone, PhD
(told in the form of a mash-up of real bios used in the past)

Sociologist. Long COVID survivor/sufferer. Aspiring craftivist. Wrote CHILDFREE BY CHOICE (Dutton, 2019).

Just another kiddo with a Ph.D.; a.k.a., Bad Aim, Zamy Laughalots, Towanda, Aims, Wined Up; Lover of awesome food, superb wine, good times, and world peace.

I've been a professor at UMaine since 2003. My work has appeared in the New York Times, TODAY Show, Dr. Phil Show, and many other outlets. I am passionate about food and have taught the Sociology of Food at UMaine and in Italy.

Teaching: Methods, Gender, Food, Intro, Movements, Families, Leadership, Capstone
Research: civic engagement, workplace harassment, the childfree choice
Activism: passionate about reproductive justice, mentoring young adults, and pop-up contrarianism

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If you’ve made it this far, thank you! To those who already subscribe, THANK YOU! Look at you, you early adopters, you! You’ve been with me on the wild ride as I figure out what this Substack thing is all about, how much I want to push the envelope in sharing my story (ALL the way! no fucks given!), and how frequently and when to post.

I’ve learned a few things so far:

1. Having a regular schedule for posts is a must.

2. Everyone should be allowed to share the love!

3. The Substack community is full of kind, incredibly talented humans.

#3 is just a bonus but for reasons #1 and #2, I have made some adjustments to the NEVERTHELESS, PERSISTING plan moving forward.

First, I will aim to post every other week - ideally, on Wednesdays. Because my body isn’t always my own (thanks, long COVID!), I can’t promise that I will always meet this goal but I can promise that I will do my best to make it happen.

Second, I’ve made some alterations to the subscription level options. The biggest change is that in my original launch, I’d limited sharing/liking/commenting abilities to paid subscribers. It’s a tip I read for encouraging paid subscriptions. But you know what? That limitation runs counter to the spirit of NEVERTHELESS, PERSISTING. I want you to share the love (and the likes and the writing). Why limit your ability to do that?

In addition to asking you to share the love (and the likes and the writing), I’m also asking you to share your hard-earned dollars if what I have to say strikes a chord for you.

Sure, you can find other sociologists on Substack. And we are rich in feminist writers on this platform. So too with folks who are writing about the experience of chronic illness.1 NEVERTHELESS, PERSISTING is my “yes, and” response to the conversations that these writers and others are having today (and tomorrow and the days following).

As a public sociologist with 20+ years of teaching, research, and activist experience, a couple/few grudges, and a newly ailing body, I bring a particular set of skills and experiences that is unique to me. This set of skills and experiences shapes the topics covered here and how they’re covered. I think they’re worth your investment. I hope you’ll agree.

Your support of my writing means the world to me. If there are folks you know for whom NEVERTHELESS, PERSISTING would resonate, please share it. From the bottom of my jumpy, unpredictably beating, Long COVID-y heart, THANK YOU.

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