I Woke Up with Cold Urticaria

A month before my 30th birthday, I start getting hives whenever I’m in the water. And during that summer, I am always in water. My boyfriend, Matt, and I are taking a big road trip, from the coast of Rhode Island all the way up to the Bonaventure River in Quebec. He is a fly-fisherman, and I want to learn. But each time I stand knee-deep in the water, my feet begin to itch. The hives form in a line up a vein in my foot. It’s confusing, not to mention alarming. I get out of the water and say, “But it can’t be the water. It has to be something in the water, right?”

We’ve been saying this ever since we left Rhode Island, where we were certain it was caused by something strange in the ocean. Maybe it’s the salt, Matt said. Maybe it’s the sunscreen, I said. And we agreed that it was probably the sunscreen. The ocean is the source of all life, an organic and beautiful thing, and the sunscreen was the cheapest one at CVS. Maybe this is why my mother always bought the good stuff. So I bought the good stuff, we drove north, and yet the hives continued.

“Are you sure you’re not allergic to anything?” Matt asks, looking at my arms and my stomach with horror. The hives cover every inch of my skin, make me appear covered in bubble wrap.

“No,” I say. “I just had an allergy test.”

Earlier that summer, a nurse injected me with pollen, cat dandruff, cockroach dust, three times over, in increasing quantities. My body accepted the cockroach dust without question. I was strangely disappointed, if only because it seemed right that a body should reject something like that.

Matt’s Family’s summer cottage, which they call a fishing camp, is on an ancient glacial lake in Maine. This is how they like to describe the lake: so clear that you can see the rocky bottom and the crayfish when there’s no wind. Though you’ll never see the wild salmon, because they hide in the deepest parts of the lake, where it’s coldest.

At their house, I listen to stories of fish, of Matt’s childhood, of the lake, while his mother drinks coffee outdoors, under her umbrella. When the day is brought to a boil, everybody gets in the water. A crayfish snaps at my toe. My hands begin to itch.

“It’s happening,” Matt says as he looks at my bubbling arms.

“What’s happening?” his mother asks.

“I’m not sure,” I say.

“She’s been getting hives,” Matt says. “When she’s in water.”

“Strange,” his mother says, but doesn’t follow up. She doesn’t want me to be strange. And neither do I. I go in to take a hot shower, because hot water seems to calm the hives.

A few hours later, at the grocery store, the hives are gone. I buy a scratch-off lottery ticket for the first time in my life to see if I can still be lucky. I can. I won a dollar! I say to Matt, I am so lucky. I have a wonderful boyfriend with a wonderful family in a wonderful part of the country. Who cares if I appear to be allergic to water?

At their camp, we eat ice cream that is, they say, the “best ice cream in the world,” yet it still makes my tongue itch. I’m not sure how to scratch a tongue in front of Matt’s family without looking strange. So I distract myself by telling stories about my brother Gregg’s four-year-old son, who refuses to wipe his own butt. He sits in the bathroom and says, “Mom? Dad? Somebody?” until somebody comes in and wipes, and everyone laughs.

“Do you have any other siblings besides Gregg?” Matt’s mother asks.

“I had another brother,” I say. “But he died when we were teenagers.”

“I’m sorry,” she says. “How did it happen?”

“Car accident,” I say.

She nods.

“That’s terrible,” she says.

It was. Blunt head trauma after he sped 70 miles per hour on a back road in Connecticut into a tree. We do not understand what caused the accident or why Mike was going so fast. We do not understand why he swerved into the tree. We do not understand why he did not apply any brakes before he hit the tree. We do not understand if he did it on purpose or if it was nobody’s fault at all. “It just makes no sense,” my mother will say, for what seems like the rest of her life.

Later, Matt tells me that his mother lost a sibling when she was young, too, that we are connected to each other in this important way, but I’m not so sure. I’m not so sure if grief is a thing that connects people, or if it’s more like a glass wall that puts you in different rooms.

For the rest of the week, I avoid his mother’s eye. She knows something. She knows how I’m strange. Marked by grief. Like her.

In Canada, my fingers begin to swell as I peel a cold cucumber over the garbage can. My tongue itches from the frozen yogurt or from drinking cold water. I carry a bag of ice from the store into the car, and after that my arms are inflamed.

“This has nothing to do with water,” I tell Matt. “It’s the cold. I must be allergic to the cold.”

He laughs. “Can you actually be allergic to the cold?”

According to Google, you can. We learn about something called cold urticaria, a skin reaction to low temperatures. On the Mayo Clinic’s website: “People with cold urticaria experience widely different symptoms. Some have minor reactions to the cold, while others have severe reactions. For some people with this condition, swimming in cold water could lead to very low blood pressure, fainting or shock.” We perform the Mayo Clinic’s official test, which does not seem very official: put an ice cube to your arm for five minutes, and if a hive appears a few minutes after you remove it, you are allergic to the cold.

“But you can’t be allergic to a temperature,” Matt insists as we look at the hive that arose. “That’s crazy.”

On the wide world of the web, you can be allergic to anything. While Matt fishes, I stay in the cabin and descend deeper into Google. I was supposed to go fishing with him, but the rivers here are some of the coldest in the world. Forty degrees. So I stay in the warm cabin and read about people who are allergic to the cold. To the heat. There are people who claim to be allergic to electricity, to their cell phones, to the internet. Babies who are allergic to touch.

Each day Matt fishes, and I become obsessed with googling my condition.

“I’m supposed to avoid cold air,” I tell my mother on the phone.

My mother is confused.

“Do you think it’s related to your thyroid problem?” she asks.

I don’t know. I have been to enough therapy this year to suspect that everything is related to everything. That’s what my psychiatrist keeps telling me, that my Hashimoto’s thyroid disorder is somehow related to my brother’s death.

“We see that with Hashimoto’s disease,” my psychiatrist said. Often within two years of a trauma, the disease develops. And he was right; two years after my brother died, my immune system began to classify my thyroid as a foreign object and attack it. “It’s all connected. The body and the mind. Other cultures have a word for mind-body integration. In English we don’t,” he said.

It seems fitting that people can develop autoimmune diseases like mine after periods of intense grief, years of wondering why him and not me, what makes me so special that I get to live, all those long nights I stayed up attacking myself, dreaming of the things I should have done to save him.

When Matt returns, he is sunburned from fishing all day. He is full of life. He asks me what I did. I tell him about the babies who are allergic to touch.

“Seriously?”

Matt is concerned. I’ve been inside too long. He is worried that he is losing me to the internet, to myself, to my fears. He has always thought that I am too afraid of things. How I clutch the door when he’s taking a turn in the car. How I panic when we are on a narrow mountain road. He’s right. One month ago, I was excited to pack up and road-trip north with my boyfriend, and now I’m afraid to eat ice cream.

“Let’s go to the river,” he says.

The Bonaventure River is extremely cold. Matt describes it to me on our way there: It looks like gin. It’s absolutely clear. It’s the most amazing water in the world. I nod my head. I have been, for some time, starting to think of water like acid. It doesn’t matter how clear or fresh it is; I know that when I touch it, it will make my skin curdle. I know that if I get in, it will close up my throat and kill me. But I feel sorry and sad for disappointing Matt, for turning this trip he’d been planning for months into a nightmare.

We drive down to the banks and watch the kids float in tubes.

Matt jumps in and I wade in up to my knees. He thinks this is all in my mind, I can tell. He has brought me to the river to teach me this, and I keep my feet in the water, even as my feet start to itch. I want it to be in my mind. I want to control my body with my thoughts. Do not react, I tell my body. It is only water. But my legs start to itch and it’s too much. I get out of the water. My legs look reptilian, the skin so inflamed, like it has separated from the bone. I know for the first time that if I go all the way into the water, I could go into shock. My tongue could swell until it fills the whole of my mouth, and I could die here, in a country not my own.

Later that night, it feels as if there is no one in the world to talk to. Nobody to call. I wonder, in moments like these, if I would call my brother Mike. I wonder if we’d be the kind of siblings who would chat about their partners on the phone.

For the rest of the week, Matt fishes and I collect rocks. He looks happy enough for the both of us. I walk along the shore and only pick up stones with white stripes down the middle. I’m not sure why, but I want them. I store them in the cup holder of his car. Later, when the border-patrol agent asks if we’ve taken anything from Canada, we lie and tell him no, and I worry for about a hundred miles that they are going to track us down.

We return to Maine for Matt’s brother’s wedding. His brother is a whitewater rafting guide who is going to take us down the Penobscot River in the morning. Everyone in the wedding party is a physician’s assistant, a former EMT, or a river guide. They drink hard liquor and tell stories about their jobs. The EMT guy hands me a drink, and the ice cubes jingle.

“Oh,” I say.

“She can’t have ice. She’s allergic to the cold,” Matt explains. We laugh, because it does sound absurd when I describe it to strangers. It’s amusing again. But even the EMTs who have seen everything don’t believe it’s possible.

“No fucking way,” they say.

They rub an ice cube on my arm for proof.

“Fuck,” one of them says as the hives grow.

But one of them, a physician’s assistant, is not impressed.

“You can take medicine for that.” Once, she says, she had a patient who was allergic to the sun.

It feels good to get drunk. To forget myself. The vodka acts like a Benadryl, calming the hives on my arm. This pleases me. I have another drink, and then another, and the vodka is way too strong without ice, but I don’t care. It feels good to shut down my body. To drink until I feel normal again. By the time I’m in bed with Matt, I am drunk. I am crying about something, but I don’t know what. It’s the kind of cry I remember from childhood, just after my brother died, relentless sobs that made me want to vomit. A deep, intense longing for home.

“What are you doing?” Matt asks. He is horrified.

“I feel like something is very wrong with me,” I say.

“You’re drunk,” he says.

“No, I feel like I’m going to die.”

“You always think you’re going to die,” he says.

The sword of Damocles, my psychiatrist explained. It happens sometimes to siblings who lose siblings. A sibling is a version of you, a body you recognize as an extension of your own. When that body dies, you believe that, in some way, your body has died, too. Or is always about to die. Or is meant to die. That’s why it’s so hard for you to choose between ice cream flavors. You live like you have a sword over your head, and with one wrong choice—you choose the wrong ice cream, you choose to go to Dunkin’ Donuts one night—boom! The sword falls. His head split open on a back road where he wasn’t found for hours.

In the morning, Matt wants me to go whitewater rafting with them. He says it will be good for us. Good for me.

But how? The water is cold. What if I fall in? What if I go into anaphylactic shock? I know I’m not allowed to ask these questions, as the person who got too drunk last night. I feel lucky to still be invited. I get dressed like it’s my penance.

“My brother will give you his splash gear,” Matt says.

His brother promises the suit will protect me from the water. He wears it while guiding in the winter.

“People go rafting in the winter?” I ask.

It’s a Gore-Tex suit that is baggy everywhere except where it suctions at the neck, wrists, and feet to keep out the water. I am much taller than the groom, so the suit is too short. I look clownish next to the other women in bikinis. But I take a deep breath and swallow the pills that everybody is giving me. Three types of allergy medication.

“I feel woozy,” I say.

“Then it’s working,” the physician’s assistant says.

We all agree I will probably be fine, unless I get knocked out of the boat. Then I will be in the cold rapids, and who knows what will happen to me.

“I don’t like the sound of that,” I say, and people laugh. It’s good to hear them laugh. It makes me feel like it will all be OK.

But then the employee of the rafting company gives us a safety lecture about running Class V rapids in the Penobscot River.

If you get knocked out of the boat, keep your head up, feet up. Give up control. Just float. You’ll come out, he says, at the end of the rapid. Unless you get caught in the hydraulics, he says. The ones just after the gorge. People get caught there all the time.

“It’s like being stuck in a washing machine,” he says. You turn around and around and around. You may be swimming as hard as you can, but you’ll probably be swimming in the wrong direction, all the way down to the river bottom.

It’s a horror. I dissociate from my body. And it’s like the river guide notices, because he stops talking. He looks at my splash gear. It’s too warm to be wearing full-body gear like this, especially one that so clearly does not fit me.

“You,” he says, and points at me. “Why are you in disguise?”

I won’t be allowed to go if I explain to the river guide that I’m allergic to cold water, and I have to go. Matt wants me to go. I want to go. I want to live my life. I am not going to be afraid of anything anymore. That’s what I have just decided. I am going to be a normal person who goes whitewater rafting with her boyfriend’s family and has a wonderful time.

“I don’t know,” I say. “Just am.”

I try not to think about how embarrassed Matt is.

“The waves are huge,” Matt says when we see them. He likes high cliffs, huge waves, tall snow. He likes getting his car stuck in a snowbank and getting it out with his brother, and maybe I would like this too, if Mike were here. We used to do things like that together, plant ourselves right where the ocean waves broke, just to see who could stand up the longest, smile as the water crashed over our heads and knocked us to our feet. That is what I try to think about each time we go through a patch of rapids, as we get ready to enter the gorge. I picture my brother standing at the ocean, his wet bathing suit gripped to his legs. He stops, turns his head to smile at the camera, at his father. He was so alive. I close my eyes. I feel the water down my back. I let go and I listen to Matt’s laughter, because he has a really excellent laugh.

And then we are in the gorge. We paddle into the first wave, and I dig my feet into the boat. I pretend I’m with my brother and we’re digging our feet in the sand because that was the strategy, he said, that’s how you stay up when the wave hits. You spread your weight out, anchor yourself in the sand, and hold tight.

The wave hits our boat, cracks on top of our heads. Each time, the water is a cold surprise down my neck. Each time, I close my eyes. I breathe. I stay completely still because stillness seems like the only possible defense against the water, which is moving in a thousand different directions.

We come out of the gorge. I am soaked, but the medicine is working. My skin is fine. The sun is out, keeping me warm. And I don’t fall in. Only one person falls into the river that afternoon and it’s not me. It’s a guy that nobody seems to know very well (what people say later, over beers). We throw out a rope and he climbs back into the boat and it is a good feeling. It’s like hearing my boyfriend’s laughter on the boat, but even better. How easy it is to save someone, how amazing it is that our loyalty to this random guy is stronger than the river.

The next day, the bride and groom are married. They take pictures in a canoe and look rustic and beautiful, and then everybody goes home. In the car, back to Rhode Island, Matt holds my hand the whole way, with the river rocks between us in the cup holder. I will keep the white stones from the Bonaventure River in a dish on my coffee table for the whole year after I turn 30, because every time I look at them, they remind me of a time when I didn’t think I would make it home.

At home, in Rhode Island, I finally see a doctor, but it’s mostly anticlimactic. The internet has already successfully explained what is wrong with me.

“But why,” I ask, “after 30 years of being allergic to nothing, would I start being triggered by the cold?”

“I don’t know,” the doctor says. “Strange things happen when you turn 30.”

This does not sound like science.

There is no known cause or cure for cold urticaria. The only real cure is taking antihistamines and doing your best to avoid your trigger: do not go in cold water, do not drink water with ice, do not eat ice cream. Although some people on the internet claim they have cured themselves. Some people were purportedly cured because they stopped eating sugar. Some people cut out gluten. Some people started doing yoga. Some people thought they were cured and woke up one day to find that they weren’t. When they least expected it, when they were out walking and a cold wind blew, their throat closed. I think of these people when I am packing for a hike, when I am headed by myself to the ocean. I wonder if I will become one of them. I wonder when tragedy will strike again. I wonder when Matt and I will break up. But then I take a breath, and I feel around in my purse for my EpiPen.

I have never used it, not once in the years since that summer have I felt myself going into anaphylactic shock. I only practiced it at the pharmacy when I first went to pick it up. The pharmacist stood behind the counter and showed me how, while a line of people waited for their medicines. He wanted to help me. He raised up his leg and pretended to stab himself with the pen.

“Everybody thinks you must stab yourself really hard,” he said. “But remember, it’s a sharp needle! Just a little effort will do. Go easy on yourself.”

He made me practice twice in the store, then told me to go home and practice a few more times, and I did. It’s important, he explained. You need to be able to do it without thinking. You need to be able to save yourself without, for a second, wondering how.