Kate Violette

Time to read: 12 minutes.

(I suppose I should start by describing my relationship with religion for a moment, seeing as how I’ve written an essay on Lent and now one on Easter. I was raised Catholic, but very liberally so. I was taught there’s nothing wrong with homosexuality, that access to abortion is an inalienable right, among other things. When I was a teenager, I realized the Church had never really been a good fit for my theistic beliefs—or rather what I was coming to realize was a lack thereof. I then spent the next several years searching for a spiritual home: I read the Bible—not the whole thing, but more of it than I’d read before, I read the Qur’an—the whole thing, the Bhagavad Gita, I attended services of friends in different denominations, and proceeded to take classes in college on Eastern religions which took me through the Tao Te Ching, the Zhuangzi, and many, many Zen Buddhist writings. I also took a class called “Theology of Middle Earth” which explored Tolkien’s philosophizing on his own relationship to religion and spirituality through his writings, and those of his contemporaries like C.S. Lewis. This was quite a full circle for one person grappling with their relationship with Catholicism, to end up finding deep spiritual harbor within a fantasy series written by a guy grappling with his own relationship with Catholicism.

When I was married, I cited the Lord of the Rings in my wedding vows, since to me it demonstrates my deepest spiritual belief: that our choices make up the content of our souls. This is, to me, a deeply Catholic idea: I don’t as much care what people believe, I care what people do. Belief is insufficient. Your values don’t have much value if they never cost you anything. This is why I’ve continued to wear my wedding band even years after my divorce—when I got married, I committed myself to the choices I intended to make in close relationships for the rest of my life. Those commitments were and remain bigger than my relationship to just one person. They were commitments to the sort of soul I aspire to build.

As for gods and divinity: in my heart of hearts, I’m not sure I’ve ever believed there’s any sort of divine force in the universe. Even if I was a theist, I don’t think I’d be a monotheist. I’m a staunch agnostic who would place bets on there being some sort of afterlife, some sort of spiritual plane beyond the physical. I don’t have strong opinions or guesses on what that might look like, I just have a suspicion that it indeed exists. All this to say: while I’m not a practicing Catholic and have not been a member of the Church for a long time, much of my thinking on spirituality, morality, and simply “how to best live a life?” is informed by some tenets of the Church that don’t require one to believe in a God in order to ascribe and commit themselves to. This is why I continue to observe Lent in my own way, and why exploring the theme of Easter is meaningful to me. I hope you’ll find something useful here as well!)

When I was a kid in Sunday School, I was frequently told by a rotating band of priests and parent volunteers that “Christmas isn’t the most important holiday on the Catholic calendar—that’s Easter”. And I remember thinking, just as frequently, “yeah yeah, but Christmas is when I get presents though, Christmas has the goods”. (In today’s parlance I might say: Christmas has the juice.) Easter, on the other hand, was just a bunch of adults telling us the holiday was important and my tiny kid self not really understanding why.

But now I get it.

Have you ever had a friend get so tripped on acid that when they came down they were like “yo man I saw a neon pink that was like no other neon pink I’ve ever seen, it was like an alien neon pink, for real”. And they continue to speak of this alien neon pink, telling you that there’s no way to explain it, that the only way to understand this neon pink is to experience it for yourself. But of course, unless you also want to trip your face off on LSD, you will simply never experience this alien neon pink. (Perhaps you have! Personally I have thus far declined to explore the land of alien neon pink.)

Where I’m going with this is: being Big Sick hasn’t just changed my relationship to suffering, it’s also changed my relationship to joy. I’m not only able to imagine greater physical suffering than I previously thought possible, thanks to experiencing it firsthand; I’m also able to imagine a bigger joy than I could having imagined previously, even though I haven’t experienced it yet, and maybe never will. There is joy even in merely the ability to understand Easter and fully hold it in your head the way few humans currently can, even if you never get to firsthand experience Joy on that scale.

Allow me to attempt to explain in a way that I wish my Sunday School teachers had taken the time to explain to me all those years ago.

I experience joy now, in the midst of my suffering, simply because I can conceive of Joy in a way I couldn’t previously. I don’t mean this in a flowery metaphorical sense, I don’t mean this in a delayed gratification sense. I am joyful, now, today. Why? Because I can now conceive of a maximum happiness that’s even greater than I previously knew existed. Because I believe a life well-lived means sampling many experiences from the cosmic buffet of Being, and I can now see the buffet is even bigger and more rich than I previously realized. Because even if I’m not able to finish what’s currently on my plate and make it back to the buffet to sample that several-layer decadent cake of Joy, even just looking at it from my seat is dazzling. Not just dazzling, but dazzling enough.

Oh, “enough” is doing a lot of heavy lifting there—let’s explore that, shall we? There was an interesting study back in 2010 that showed most of the happiness boost from a vacation happened before the vacation. The anticipation of the vacation is as much a part of the vacation as the vacation itself. This is what I mean. Whether or not I become well again someday, the anticipation of what it would feel like to become well again brings me happiness. And much like planning for a vacation, planning for being well someday—in small, achievable ways appropriate to my level of illness—genuinely makes me happy.

Of course, “planning” doesn’t really look like the planning you know and are used to from healthy and abled life. My illness has divorced my life from the calendar, from clocks, from deadlines and expectations. I don’t know when I will have good days, I don’t know when I will have bad days, I don’t know when (or if) I will ever start having ever better and better days that will take me back to some semblance of health. So what does planning look like in such a context?

Well, what are some dreams you’ve always had? Personally, for heritage and cultural identity reasons, I’ve long wanted to become fluent in French. (That background is a whole other blog post for another day.) I would also love to live abroad in a primarily French-speaking place someday to really solidify my language skills, and to feel properly re-moored to the ineffable through-threads in the fabric of humanity and history that resulted in a Me. I’ve witnessed a few friends move abroad in the past several years, to places where English is not the primary language, and it’s seemed to me that the friends who got the most out of their experience—and who were happiest—where the friends who dedicated themselves to picking up the language soon after arrival (or even beforehand).

Last night I finished a book in French for the very first time. All three hundred some odd pages of it. I have braved the passé simple, and I have emerged victorious. I feel like a goddamn fucking superhero. I can feel my ancestors nodding approvingly and smiling. (And by “ancestors” I’m including some pretty recent ones, too.) “Nice work, Kate”, I imagine them saying, “welcome home.”

Not to brag, but—no, I absolutely mean to brag. How many of you have finished your first book in another language recently? Yeah that’s what I thought.

And so, I prepare for a future life abroad, that may or may not happen, because the preparation is half the fun anyway. How sad it would be to get the chance to live abroad someday, and still be unprepared for it! Luckily I don’t have to consider that, because if my Easter comes, I’ll be ready.

But it’s not just my Easter. I’m also more connected to other people’s joy as well. I have made friends, good friends, who are grappling with the same illness. Any success my friends have, is joy that I get to share in, too. And yes, the cost of being more connected to other people’s joy is that I’m more connected to other people’s suffering as well. I wouldn’t have it any other way. I will take the bad with the good. That’s life, that’s love. I’ve waxed poetic on this before, about how if there were ever a cure for ME/CFS (or hell even just meaningful partial treatment), the collective joy of everyone afflicted with the illness and those closest to us would eclipse the Sun.

Why would you not want to be part of that Joy? Sure, ME/CFS is an illness that no one chooses, and we still aren’t even entirely sure how people develop it in the first place. But I’m drawing the camera angle even wider here: there may exist ways that you can more meaningfully engage with humans experiencing suffering, that would ultimately give you access to greater joy. I think sometimes people who are not part of a particular marginalized group begrudge the joy of that group, precisely because they know they will never be able to access their joy. I know this is absolutely at play for some white folks who begrudge Black joy. Same for straight cis folks and queer joy. You can never, will never, experience the joy of these groups from the outside, because you haven’t experienced their suffering.

That might feel unfair to you—that there are Joys you’re locked out of experiencing through no fault of your own birth. But there is at least one marginalized group you could choose to be part of. Still being covid-cautious in 2024—forgoing risky social events, masking everywhere in indoors public, etc—is absolutely a choice you can make to be part of a marginalized group. A group that is sacrificing, and might, one day, experience a joy proportional to the sacrifices they’ve made. I know a lot of covid-conscious folks drumbeat the line that “normal is never coming back, this is how things are forever now”. I don’t subscribe to that belief. I think one day we’ll have proper treatments for both acute and Long COVID, perhaps even more solid preventions. And I intend to continue making deep, nontrivial sacrifices to avoid contracting or spreading a covid infection until that day.

Another way you could be part of a marginalized group’s joy is by standing in close solidarity with your friends who have ME/CFS and/or Long COVID. Emphasis on ‘close’. There’s a reason that often when we patients are discussing how difficult the illness is, we’ll also include primary caregivers in our accounting of who suffers from the severity of this illness. I don’t mean a friend that pops by now and then—I mean someone who is truly in the trenches with their ME/CFS family member or friend, day after day after day. Someone like Janet Dafoe has as deep an understanding of what it means to have ME/CFS as anyone can without the illness, and I suspect her understanding is pretty darn close. When you suffer that closely, riding sidecar with someone going through something unimaginable, you are that much closer to maybe experiencing their joy someday too.

Has this entire essay just been one long way to say you can’t know joy without suffering? Not exactly. You can know happiness, you can know contentment, you can know beauty, all without experiencing suffering. But there is a capital ‘j’ level of Joy that I do believe is only accessible to people who have also tasted the opposite end of the spectrum. And there do exist ways to choose to experience that opposite end of the spectrum, if that’s what you seek.

And even if the ‘pay-off’ never comes—just knowing what an Easter level of joy would look and sound and feel like is actually already ‘pay-off’ enough. A Christian interpretation of Easter relies on the promise of good things happening. My secular reimagining of Easter refutes this. Just being able to imagine Joy is already a gift, has already enriched your life and broadened your experience as a person. You’ve seen the alien neon pink, even if it’s only in your daydreams.

I have not found joy in spite of my illness, I have found joy because of my illness. My illness cannot break my spirit in any way that matters, because it’s precisely what has shown me what true Joy can be. I have lived more deeply and fully because of it.

I now understand what Easter is all about.