The Ice Worm Paradox
Mysteries inside of glaciers meet medical mysteries inside of me.
I’m lying on a table on my left side, facing a monitor filled with fuzzy black and white. The technician puts a wand onto my chest and suddenly I am looking at my heart. “That piece right there? That’s the valve.” I’m silent while he takes the pictures and measurements, a 2D echo.
I’ve never seen my own heart before. I watch the valve open and shut, open and shut. The muscle contracting repeatedly. Tears spring up, surprising me. I don’t take my eyes off my heart. I want to watch it doing the very best it can inside my chest. I am flooded with a tenderness towards my body - look, here is my heart! Beating to keep me alive every second! There’s the valve, letting blood in or out or whatever the valves do, let’s be honest I don’t know! I think, if every asshole in the world had to watch their heart as it beat inside their chest, maybe there’d be fewer assholes in the world. My heart has been through so much in my 33 years topside. And still, it pumps on.
The technician asks me to roll over so we can check my carotid artery on both sides of my neck. I thank my heart, but silently - I don’t want to freak him out. I also don’t mention the vampire jokes that come to mind when the carotid imaging starts. He probably hears that enough already.
I’ve been thinking a lot lately about ice worms. I’ve loved them for years now, but as I get sicker with no answers in sight, they’re more often on my mind. The Ice Worm Paradox is puzzling and miraculous. These half-inch worms live deep inside the ice of a glacier, surfacing during the summer months to feed on algae and microbes. During the winter, they don’t come back up at all, but somehow when they next surface after the winter season, they’re plumper and more lipid-rich.
Their existence defies what we know about cold-blooded organisms; usually, cold makes them slow down all their systems to conserve energy. But the ice worms are active, wriggling their way up to the top to eat, and going back down into the glacier at night. The exist in the billions, potentially - nobody really knows yet. The ice worms don’t make any sense, yet there they are, living their wormy lives, unaware that we think they shouldn’t be.
Trying to describe what is happening in my body can be difficult, because there’s so much. People’s eyes start to glaze over if I list it all out loud. Yours might too, just from reading it.
My legs swell up - even double compression socks can’t always help. Walking in the summer on swollen feet, with fluid built up on the tops and bottoms of them, is painful. I use a cane because my balance and depth perception is fucked. I’m afraid of falling in a way I never was before. I used to be able to hike 4 hours and then swim in a mountain lake afterward. That was only three years ago, but it feels like a different lifetime.
My heart beats strangely. If I bend, or roll over in bed, or take a hot shower, or just walk up stairs. It will beat out of rhythm, huge pumps that set me down in alarm before resuming a normal pace.
I forget words, names for people and things I know. It gets worse if I am tired. My partner sees this more than anyone - I’ll stare at her in mute frustration, lost mid-sentence, trying to find the word I can almost feel the shape of in my brain and connect it to my mouth for speech. Sometimes she can guess, and that is always a relief.
My joints ache and swell. Mostly on my right side, which is where the spasms occur. Technically they’re tremors, or Myclonic jerks - muscle movements happening involuntarily. They started in my right hand and right foot. It used to be just my fingers and toes, but it’s progressed. Up my arm, first wrist, then elbow, and up my leg to ankle and knee.
If I concentrate, I can make the muscle stop spasming by flexing it. But the spasms will simply shift, from hand to foot, or over to my left side if I’ve got both of my right limbs engaged. I’ve had to get used to people staring at me.
If I have a lot of sensory input - lights, noises - the spasms increase in frequency and violence. We went to the aquarium for my birthday and my right hand, wrist, and arm went off wildly the whole time. I rode in a wheelchair pushed by my partner and a friend. It was the only way I could see everything without being so wrung out by the spasms taking over completely.
The exhaustion is unlike anything I’ve experienced in my life. Even when I worked 16 hour days, 6 days a week, between three jobs, it wasn’t like this. I am in pain every waking moment. I am exhausted even when I’ve slept for 12 hours. It feels bone-deep. It feels like my very cells are too tired to move me. It feels so, so scary.
The essential paradox of the ice worm is that their energy levels speed up as they get colder, which should be impossible. Some scientists think they have an extra bit of DNA that appears to speed up their production of ATP on a cellular level. Others believe they may have melanin throughout their entire bodies, which they use to soak up energy from the sun like a solar battery in worm form. There’s a theory that they may have stolen some DNA from high-altitude fungi, but that should also be impossible to incorporate cross-species on a mitochondrial level.
Everything we know about physics and biology tells us that the ice worm shouldn’t exist, and we’re still not sure how exactly they sustain life. There are theories, but we may have a limited time to study them. They only exist in a few coastal glaciers (mainly in the Pacific Northwest, Alaska, and, weirdly, Tibet), and those places are rapidly melting due to global climate heating. I’m not a biologist and I don’t know anyone who’s a worm scientist, but I hope the ice worms last long enough for humanity to figure them out. They might be able to help us.
I have undergone a multitude of medical testing in the past few months. In addition to the 2D echo of my heart and carotid arteries, my legs have been scanned looking for clots. I’ve had an MRI, an electro encephalogram, complex vision testing, vials upon vials of blood drawn, peed in so many cups, and one weird test that involved blood pressure cuffs on both arms and two places on each leg, squeezing repeatedly. I liked that less than the MRI - for the MRI, I resolved to keep my eyes closed the entire time, so I’d never know how small it was inside the tube. I pictured blue skies and Chappell Roan live performances I’d seen online.
I’m slated for more testing still to come. A chest x-ray, a CT scan, and once insurance gets wrangled, several weeks of wearing a heart monitor. I’ve seen a neurologist, an eye movement disorder ophthalmologist, a psychiatrist specializing in weird brain shit, and more. In the new year, there will be new specialists. Rheumatology, a seizure specialist, and perhaps endocrine.
So far, nobody knows what is wrong. Nobody has even any ideas, really. They ruled out a tumor in my brain and that’s about it. My symptoms are concerning and perplexing to every medical professional, but they haven’t figured it out yet. Nobody wants to say “long covid,” but I know that’s at least a cause, because all of it started after getting covid. I don’t say it either, at least not during doctor’s appointments. I have found it tends to shut medical professionals down and they don’t want to continue helping. I wear a mask to each appointment and feel despondent whenever the doctors do not.
I’ve locked down my life to the point where I’m never around people unmasked, because if I get any illness, I’m fucked, but especially covid. I have lost important relationships; people I thought I could trust gone completely silent, every text unanswered. I worry about overburdening my friends who’ve stuck around this far. I try to tell myself to limit my complaints.
When I have the energy, I look at Long Covid forums, reading about treatments that have helped other sufferers. I skip past the entries from people so despondent that they wish to die. I try not to think things like what if I get worse. Critics say if you’re still taking Covid precautions, you’re living in fear, and to that I’d reply yes. Yes, I am. And if you were smart, you would be, too.
There’s nothing about the ice worm in particular that could help me, now, physically. There’s a few doctors in South Africa and Europe who might be more useful, where they’re draining the blood from Long Covid sufferers and cleaning it of microclots before putting it back in. But I think about the ice worms more often, because of their paradox (and probably also so I don’t have to think about the thousands of dollars it would take to seek cutting-edge treatments).
I’ve often felt like I shouldn’t exist. It’s common for people with Complex PTSD to feel like they won’t make it to the next decade. Blame it on childhood trauma: my Adverse Childhood Experiences score predicts I’d be much less functional than I am currently, emotionally anyway. There’s a lot I shouldn’t have been able to face or escape. But I have. And I continue, existing.
I think that’s why I return to the ice worms so often. They’re impossible, yet they continue. Knowing there’s something in nature so seemingly contradictory to scientific principles helps, somehow. They comfort me, from deep inside their glaciers. I have to think of my illness as a mystery that may be solved, one day. I imagine I’m like an ice worm: persisting, in spite of all the impossibilities. I picture my illness as a winter, spent deep inside ice. Maybe there will be a summer for me, too, one day.
Further reading:
I keep coming back to this. Love it so much. Love you. Thinking of you.