Kate Violette

This year, I’m letting Lent come to me.

I’m already in the desert. Starting in my 20s (or probably even before), I was small to medium sick, on and off, increasingly so over time. A bit over three years ago now, I became Big Sick. The sort of complicated Big Sick where there are now so many problems it’s hard for doctors to figure out which are the roots and which are the secondary problems, and that’s if you’re lucky enough to find a doctor to take you seriously in the first place. (Perhaps if a doctor had taken you seriously sooner, your illness bramble wouldn’t have gotten so bramble-y to begin with.)

People love quoting that Mary Oliver poem about “You do not have to walk on your knees / For a hundred miles through the desert, repenting.” Except I (and many others) have had to walk through the desert on our knees. I have, mostly, not been given the love a person in my position should freely receive. At first, I only asked for help from friends when I really needed it. But that was still too much for many friends and they came to view me as a burden and disappeared, or the relationship buckled in painful, unfixable ways and so I disappeared. So now I only ask for help when I really, really need it. And it’s not enough. I would probably not be as sick as I am if I had more help.

Yet I persist anyway, through the desert of my illness, deserted.

This year, I’m letting Lent come to me.

In 2023, I figured out the apartment I was living in had a severe mold issue—bad news for someone with my immune system troubles—and I had to get rid of many belongings. I could not take them with me. This included many irreplaceable, sentimental items. In effect, I had to knowingly burn down my own house.

I can’t really derive much pleasure from food—there are too many foods I still can’t eat, and even the foods I supposedly can eat, well, sometimes they hurt me for seemingly no reason, too. It’s hard to fully enjoy putting food in your mouth when every meal might be a gamble for your life. Who can eat mindfully in a war zone?

For several months in the worst phases of my illness (so far), I was too sick to even be able to listen to music, one of the greatest and deepest loves of my life. In my last apartment, the apartment I had to leave, I finally had room for a piano. A piano!, an infallible salve for my soul; to me, the epitome of Joy. I played from childhood through college, but moving around a lot in my adulthood meant I often didn’t have a piano at home. Until I fixed that. I got about three glorious months of playing in before I got sicker again (probably when the mold issue silently started), became too sick to play, then had to downsize my belongings anyway—because of the extent of the mold, and because I bought and moved into a tiny home so I could be in control of my home’s environmental quality while I try to recover from my illness. At first it was devastating to face having a home with no piano again. But just as devastating was accepting that I was too ill to sit up long enough to play anyway, so it didn’t really matter if my new home had room for a piano or not.

What more can I sacrifice? I’m already in the desert.

This year, I’m letting Lent come to me.

I’ve held true to my belief that the pandemic is not an inevitable phenomenon and humans are dying at the hands of other humans, not a virus. I haven’t eaten inside a restaurant in four entire years, and that doesn’t even register on the Richter scale of my grief, because it’s the least of my problems.

It’s not safe for me to go get my own groceries. I don’t really have the physical stamina to do it anyway. So I rely on Instacart, which is a nonstop onslaught of suggestions and upsells, the app desperately trying to get me to buy more food by suggesting all the things I cannot eat, but that wish I could. A psychologically painful gauntlet just to get access to the few foods I can eat.

Every day there are a (literal) dozen different times I must take different medications and supplements. My meals must be carefully timed around all this. If an alarm goes off for a medication and I do not—because I am so deeply fatigued from illness—get off the couch to take my medication right away, it could disrupt my next meal, the meal after that, even my bedtime. My days are tightly orchestrated train schedules. (I have, while writing and editing this essay, had to get up to take medications two times and am about to need a third.)

I’m already in the desert. What is the purpose of adding more sand when you are already inundated with sand? What does someone like me commit to sacrificing for Lent?

I exercise Olympic-level discipline just to keep myself alive—not even get better, just cheat death for one more day/week/month/year/how-long-can-I-make-it, so I can’t expect myself to hold true to yet one more thing that I wouldn’t already naturally be drawn to. I thought of perhaps better hewing to my bedtime routine, sacrificing my indulging in later bedtimes—but even though that’s a goal, that can’t be my Lenten goal.

I’m already in the desert. I am at max discipline. I cannot add more sand.

An internet buddy said something wise to me about an idea that Lenten sacrifice serves to create room to add something else. I like this very much, but upon thinking about it: what though, am I able to add? I barely have capacity for existing right now. I was slightly better for a couple weeks in October/November, but those gains were lost almost as soon as they came. Now I’m worse again. If I had more energy for socializing, I would like to challenge some of the bummer narratives I’ve picked up during my illness about my worthiness as a member of society. An attempt to offer my insecurities as spiritual sacrifice. But my energy for socializing and making new friends is only available to me in fits and starts; I barely have energy to somewhat keep up with the few friends I do still have.

People have no idea how bad infection-associated illnesses like ME/CFS can get. If the name Whitney Dafoe means nothing to you—you should fix that. Read his writing. Long COVID is adding waves of more people to these ranks all the time and it seems to be able to get anyone. Respectable estimates put it at around 20 million people with Long COVID in the United States alone, and there were a few million with pre-covid ME/CFS already. There was a recent Senate committee hearing on Long COVID, to much fanfare within the infection-associated illness community, but not many other folks seemed to notice.

The sick and disabled aren’t just fighting for us, we’re fighting for you too. Capitalism and ableism are inextricably linked. Why do you think the powers that be are working so hard to get you to leave your immunocompromised friends for dead? (Alice Wong could tell you why. If that’s another name you didn’t know, well—you should fix that.) The ill and disabled do not need to sacrifice more. The comfortable, the privileged, the “who, me? I’m the problem, too?” need to sacrifice more. They need to read the words our community’s most beloved members are putting out there into the ether already, typically through great effort and personal cost. We’re trying to tell people, but will they listen? Can they look past what initially sounds like anger but is actually love? Love for those that don’t necessarily even love us back. Love all the same.

So many of us are already in the desert. We cannot add more sand.

But the one thing that even Whitney can do, (at least sometimes), is to live in his head and reflect. I can reflect. And isn’t spiritual reflection really the point of Lenten sacrifice anyway? To slow down, to whittle down, to be still enough to hear the whisperings of your own soul.

But I am already slow, and whittled, and still.

To Lent, I’ve already arrived.

Society thinks I’m worthless because I need a lot of help to stay alive right now. Because I can’t work. Because I can’t do any number of “normal” things. Society thinks they’re better than me because they think I must have done something to deserve my illness, please let Kate have done something to deserve their illness because otherwise that would mean I’m vulnerable too. To society I’m an inconvenient reminder. But you know what season actually welcomes me? Lent. I am a human being currently shaped in Lent’s image. I don’t need to walk on my knees for a hundred miles through the desert, repenting. Lent announces my place in the family of things.

Lent is the season I’m made for. I’m already home. And home is a nice place from which to reflect.

There’s a reason the powers in the modern world try to keep everyone so busy they have no time to reflect. Even when my life was more “normal”, some of my most peaceful (and insightful) moments have been when I simply paused, often by a tree or other fount of nature, just to sit and have a think. (When’s the last time you truly sat and reflected on life, without an agenda?)

What should I reflect on this Lent? I’m not sure. I don’t usually read poetry, but I think I might like to read some. Perhaps I should return to the poetry of mountain hermit Buddhist monks, that I was so enamored by when I was younger. (It’s a whole niche subgenre of poetry, if you didn’t know!) I might pick back up the Wikipedia wormhole I went down the other day, reading about the lives of different saints. Maybe I’ll write about the things I reflect on. Maybe I won’t. I’d like to, but it can’t be a goal. I can’t add more sand. I’m in the desert already.

But, for 40 days, I’m also home.

This year, I’m letting Lent come to me.