Five Things Longhaulers Hate To Hear: Number 3!

Hi. My name is John, and I’m a COVID Longhauler.

Her name is Sarah and she lives across an ocean and the only reason I know her at all is because, despite a thousand differences, she now is a lot like me. Or I am a lot like her. Whatever.

We are both Longhaulers.

Sarah is a fellow storyteller, far more poetic than I, born in the United States but living in Israel and trying to raise her kids while also sometimes simply trying to breathe. She’s sick, and she’s real.

Sarah brings to us Thing No. 3 on our list of Five Things Longhaulers Hate to Hear (and Five Things We’d Rather Hear Instead):

No. 3: Why Are You Still Sick?

For. The. Love….

The fact that this is a thing makes me want to punch a dolphin in the eye. But dolphins are tough to come by here in Good Ole’ Missourah, so let me sit back and let Sarah explain the hurtfulness of this type of “support.”

“I know they probably mean well, but it makes me feel as though there is a rift in my luck, a cleft in my determination, a fault in my morale,” says Sarah. “Or worse: I’m just being dramatic.”

Anyone who has fought the Mental Illness Beast knows exactly where this kind of thing comes from. It’s this bias against the Unseen Ailment, the belief that if it can’t be put in a cast or covered in a bandage, if it isn’t symbolized by a loss of hair or the need for a wheelchair, if it’s not apparent, it is somehow less-than on the Great Spectrum of Things That Could Screw Up A Life.

Like Sarah, if you look closely enough at me, if you get deep in the trenches, I bear the marks of a Longhauler. Oh, they aren’t as obvious as a cast or wheelchair. But they are there. My eyes now have dark circles under them and I generally looked tired (because I am). I will pant like a fat dog just back from a hot-summer jaunt when I reach the top of a single flight of stairs. I will randomly disappear — from your sight, from texting, from Facebook messages, from my desk at work — to deal with the sensory overload. I will say the wrong word when I think I’m saying the right word, I will stop in the middle of a sentence because my thought has dissipated like a morning fog, and I will ask the same question I asked you literally 10 seconds before because I have no recollection that I just asked it of you.

But it could be worse. It’s worse for Sarah.

“I’m not being dramatic about the two days curled up in bed where it felt like someone was beating me in the stomach with a very heavy nickle sack. And the fun part? It’s really all a guessing game. I don’t actually know if it was a random stomach virus or food poisoning or a reaction to medication I now have to take FOR THE REST OF MY LIFE because COVID trashed my thyroid. Yay. Let’s play! Which is it? If I take my pills again will I be in agony? If I don’t, will my arrhythmia get worse and I get sicker? I’m not being dramatic when I walk from the car to the front door like an old woman leaving the shtetl for the very last time – schlepping her entire life in a burlap sack on her back, frail beneath, trembling like a leaf weighed down by a giant weight of pots and pans and sabbath candles, of a feather pillow, a few shards left over from her broken dreams. (Ok, fine, maybe that’s a LITTLE dramatic 🙄). I’m not being dramatic when I fall asleep in the afternoon – or sleep til noon…”

Sarah, too, knows what it’s like to feel enraged by these “helpful” people who are really just trying to give us a boost (or something).

“When someone says ‘why aren’t you better?’ I want to laugh, and cry, and maybe punch them in the mouth a little except I now bruise like a peach, and I know it’ll hurt me more than it’ll hurt them.”

Try dolphins instead, Sarah.

Five Things Longhaulers Would Rather Hear Instead, No. 3: “Let me help you.”

We are all trying. Every single goddamn day, we are trying. And here’s the thing, some days are OK. Maybe even, dare I say, good? But I’ll be damned if I have found a way to actually enjoy those days. Sarah has, and I am looking to her as a role model to try to find my way into enjoyment So far, I have failed because I know that, just around the corner, there’s another day of needing three naps and struggling with mouth sores and brain fog and this MFing joint pain in my left index finger that, ordinarily, would be nothing more than an extremely mild annoyance but, when coupled with all this other stuff, is like a kick in the gut when I’m already on the ground.

Sarah talks about her challenges authentically.

“I tell you a lot about the raw suckage – like how my kids are the ones taking care of me instead of the other way around, how they pat me on the hand and say “good job” when I’m able to get out of bed and cook dinner, about how they’re afraid to fall asleep because what if when they wake up, I don’t?”

So here’s the deal: Don’t question why we are still sick or even that we are still sick. Instead, help. Just freaking help. Take something off of our backs, off of our minds. The key, say the really smart people, is for us to sleep and de-stress and accept our current limitations instead of fighting them and hating them, all so that our bodies and minds can heal. So what can you do to facilitate any of that? Can you come over and take care of the kids? Can you bring us some comfort food? Can you sit silently with us or sit not-silently with us and talk about something else? Can you listen to us talk about this big “it” that has invaded our lives — I mean, really listen without thinking about what you’re going to say next or about where you have to be in a half hour or what vitamin you’re going to recommend we take? Can you help create a sleep palace for us so we can get the rest we crave and need but can’t seem to find? Can you be understanding when we disappear instead of resentful and judgmental? Can you hug us? Can you do some googling so you know everything there is to know about what’s happening, more than we know about what’s happening, so we don’t have to explain everything? Can you… help? Let me rephrase that, because I refuse to believe that anyone who cares an ounce for us would answer the question in the negative. So instead, how can you help?

I’ll let Sarah close this out.

“We don’t know how much time we have – but we do know death is the only certain thing along with change. And while we are here and the sun is out, if we we can feel it on our skins, the hard edges soften and the moments can be as soft as the breeze wafting through the orange blossoms in the orchards that we pass along the way.

“So please: Don’t ask me why I’m still sick. There’s no reason. I just am. I’m not a failure. I’m just a person who is trying her best. But one sweet day, I won’t be sick anymore. It’ll all be over. The pain will go away. And today, I’m one step closer.”


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