We wanted to share this essay written by Sarah Elizabeth Turner. It tells of her living with Raynaud’s, fighting the cold in the Midwest, and her physical and emotional struggles in dealing with the condition. There’s much in her experiences we can all identify with!
It starts with a tingle. At least, that’s what I’ve heard. I don’t really remember anything but the cold.
“Sorry, my hands are cold,” I said for perhaps the thousandth time in my life upon meeting someone. I was shaking hands with a new acquaintance at an outdoor evening reading at the end of July and had long ago learned I should apologize for my frigid grip. It wasn’t that cold outside, but I was in short sleeves and had been drinking from a glass with ice in it.
At a similar encounter in the middle of December, my heatless handshake caused someone to recoil, as if I’d bitten him with my below-body-temperature touch.
“Your hands are so cold,” he said, shrinking away from my grasp in terror. Or possibly disgust. You should feel my feet, I thought, but I expressed sincere regret instead.
Usually, I would acknowledge the issue immediately, before the person had time to comment, but in that moment in December I forgot my manners. I haven’t made the same mistake since, and often people just laugh off my comment in that awkward Midwestern let’s-not-talk-about-personal-issues sort of way, not acknowledging that it’s weird to have cold hands––especially in the summer––so I was surprised by the response to my preemptive apology in July.
“Are you a fellow Raynaudian?” my newest acquaintance asked.
I paused a second before saying, “Yeah, I am.”
I have Raynaud’s Phenomenon, a name that sounds ridiculous to me, like I’m some freak side show act, Come see the wondrous sight known as Raynaud’s Phenomenon. My friend Krisanne refers to it as “Rainier’s Disease,” and I don’t correct her because I prefer that somewhat self-explanatory name. Rainier’s sounds like a mountain-climber’s condition, something exotic that affects only those who have faced treacherous climates and battled insurmountable odds. Raynaud’s (ray-nodes), in contrast, sounds like part of an x-ray machine.
There are two types: Primary Raynaud’s or Raynaud’s Disease, which, I think, is really what I have, and Secondary Raynaud’s or Raynaud’s Phenomenon. The disease version is an affliction in and of itself; the phenomenon comes secondary to something else, like lupus.
The basic idea is that when I’m in a cold environment, or I’m feeling stressed, the capillaries in my wrists and ankles constrict, cutting off the blood supply to my hands and feet but protecting my core from cooling. It’s rare that I meet someone else who’s afflicted, and even rarer for that someone to be male. According to The Raynaud’s Association, Raynaud’s affects approximately 15 to 30 million Americans, or about five to ten percent of the population, and women are affected nine times more often than men. One estimate has 20 percent of all women of childbearing years affected by Raynaud’s. It’s thought to be at least partly hereditary, although no genetic link has been identified; at least one of my aunts and two female cousins are similarly stricken.
On the scale of chronic diseases for which there is no cure, Raynaud’s ranks pretty low in severity for the most part. I don’t have to take medication or do special exercises, and I have full function of all of my limbs and organs. I don’t have to monitor my blood or follow a special diet, and my condition rarely comes up in conversation––many of my friends wouldn’t even know I have it, that’s how little my disease has an impact on those around me. Even I don’t think about Raynaud’s as much as I should—don’t take care of myself as well as I should—because it’s just sort of there. Only when I have physical contact with someone else (or with a non-affected part of my body) do I remember, “Oh, yeah, I have Raynaud’s.”
It’s not that I don’t realize my hands and feet are cold, I just can’t feel it the way other people feel when their extremities are cold: from the inside. I’m more likely to notice when my hands and feet are warm. Having cold hands can be helpful when I have a headache or a burn: instead of frozen meat there’s frozen me to soothe your fevered forehead. In addition to being chilly, or perhaps as a result of that, I have lessened sensation in my fingertips and toes, which means have to be careful, especially with my feet, so I don’t injure them without realizing it––because I can’t feel what I’ve done––or so I don’t burn them in an effort to warm up.
People often think of Raynaud’s as a winter disorder, but flare-ups, or what they call “attacks,” can strike at any time. A cool summer evening, not wearing socks or long sleeves, handling frozen food (for any length of time), even holding a glass with ice in it can cause my hands to cool and turn red. Or white. I can’t handle the frozen turkey on Thanksgiving, shouldn’t put my own ice cubes in my drink. I shouldn’t even open a bag of frozen vegetables or touch an ice pack without wearing gloves, no matter what the temperature is outside.
At least twice, I’ve had what I believe to be mild frostbite, but it might have been just a severe attack. Two or three toes turned stark white and I had trouble wiggling them. Both times this happened because I wasn’t dressed warmly enough for the Minnesota weather on an evening when I had to walk several blocks through wet snow because of bussing or transportation issues. Both times, I tried pounding my feet on the ground to warm them up, thought warm thoughts, braced for the worst. Both times, I ran a lukewarm bath and stood in my tub, crying, as the water ran over my feet, which stung and ached at the same time, buzzing and tingling like they’d been electrocuted. Where they were normally numb, they hurt with the same intensity as a brain freeze.
SmartWool socks are a Godsend, but only if I remember to put them on when my feet are warm. They act like an insulated cooler or thermos: whatever temperature your feet are, that’s what they’ll remain. With Raynaud’s, my feet don’t generate enough heat to keep my SmartWools warm, so I have to warm my feet before I put them in socks or they’ll never warm up, even at home.
On one particularly cold day in the heart of winter, I waited longer than normal for the bus to arrive, standing in the direct path of a bitter wind and stamping my dress shoes against the snow-covered cement. My toes didn’t thaw during the 45-minute bus ride, or the three block walk from the bus to work, or even as I sat at my desk bouncing them up and down in an effort to increase circulation. Eventually, I sneaked off to the bathroom, peeled off one thin black sock at a time, and stood at the cramped sink running water over my clammy feet to warm them up, grateful for the privacy of the single-person restroom so I didn’t have to explain myself or ask my boss if we could please turn up the heat for my sake. Even though no one could see me, I felt humiliated over what lengths I had to go to just to warm up at work, especially since I’m from around here and therefore should have adapted to the cold ages ago. I’m more than a little concerned that one harsh Midwestern winter I’m going to lose a toe.
I can’t help but wonder if I’m partially to blame for my condition. After all, I hardly take care of myself now that I’m aware of it. I go out without warm winter wear, carry cold pop without gloves, bare my feet beyond the balmy bounds of summer. I still seek out the coldest patch of my bed and smother it each night, hoping for a respite from the heat, even in winter. I was born in Wisconsin at the end of February, and it seems my body wants the frigid weather.
My dad is a human furnace. He would happily go all year long in T-shirts, oblivious to the winter winds. He emanates heat, and I am my father’s daughter, often overheating just like he does in the summer. I would much rather freeze than sweat and could never live down south in the muggy marshes of Louisiana or the arid zone of Arizona. I can’t imagine living somewhere without four defined seasons, and although I can’t enjoy winter activities the way I used to, I still hold out hope that someday I’ll be able to ski again without repercussions from Raynaud’s.
I have never officially been diagnosed.
I first noticed the change when I was in sixth grade. The blue tinge to my skin when I’d go outside, the way my hands were cold to the touch like snow led me to believe they were formed by hoary frost, not heat and blood and bone and skin––icicles on the ends of my hands instead of fingers. My hands felt like death to the touch but internally seemed unaffected. I don’t really remember the tingling sensation that’s supposed to accompany early Raynaud’s, but I do remember visiting several doctors, at least one of whom brought up the disease.
“Hold this between your fingers,” she said, sliding a piece of paper between my pointer and middle fingers. I’m still not sure what she was looking for, but after watching me for a few seconds, she told me Raynaud’s was likely. Afraid to find out if it’s something worse, I’ve been living as if “likely” were “true” ever since.
Luckily, my current apartment has heat included with the rent. Not only that, but the heat’s usually on quite high, which is good since I can’t control the thermostat. I joke that I have the heat of an old person and the feet of a dead person, but, really, a coroner would have a hard time pinpointing my time of demise if all he or she went by was the temperature of my toes. By their standards, I’ve always been dead for several hours.
I’ve heard that one cure for Raynaud’s––if you can call a short-term solution a cure––is to stand somewhere cold, such as outside at night in early fall or on the porch in winter, wearing shorts and a tank top and place your hands and feet in hot water. The thinking is that you can train your body into realizing that your hands and feet need heat too, not just your core. Knowing this is a treatment adds to my worry that I may have contributed to my condition: I’ve been a swimmer all my life, but your body loses heat more rapidly in water than it does in air, and often the pool I practiced in was kept at a very cool temperature. Not only that, but when I was little I used to wash my hands in cold water, only cold. I’d stand at the faucet in our downstairs half-bath and switch the handle to “C,” waiting for lukewarm to splash ice cold before rinsing my hands in it. I worry that my cold water-washing trained my hands to react the way they do now, that my passion for swimming has been bad for my health in the long run.
My aunt Patty told me about the aforementioned treatment, but I’ve never tried it. She said it took two weeks to fully work and only lasted six months, and I have this problem year-round. My Raynaud’s only used to be an issue from late September until late April/early May, but I find it happens when I’m tense or nervous or sitting too close to the air conditioner without long sleeves.
There is, of course, another solution: Move somewhere warm.
No one knows the exact origin of the term “cold feet.” It means to hesitate or have reservations that prevent an action, particularly marriage, but its usage cannot be traced to a single source, just like Raynaud’s can’t be traced to one cause. Some theorize that the term “cold feet” means that your feet are frozen in place, immobile, and others believe it comes from the fact that fear (like stress) causes the body to divert blood from your extremities inward. I don’t know that I believe one theory over another; they’re both plausible. But, in my case, indecisiveness hasn’t usually presented a problem.
I will admit, however, that I hesitated before moving to Minnesota four years ago, even though I grew up in Eau Claire, Wisconsin, and to many of my friends this seemed like a return, an easy choice for me to make.
I remember sitting in my apartment in Brooklyn and second-guessing my decision, for reasons both emotional and physical. Was I ready to leave? Did I want to say goodbye to New York City, probably for good? After four years of acclimating to a slightly milder climate, could I handle the below-zero temperatures of January? If I were to leave a northern city that I loved, wouldn’t it make more sense to travel somewhere south?
It’s not that I wasn’t cold, really cold, sometimes in New York. I endured ribbing from my East Coast friends that I should be hardier––“You’re from Wisconsin, you should be used to the cold,” they teased.
“We don’t walk around in it,” I countered.
But the lows aren’t as low along the coasts, and the coldest I remember it being in New York was in the high teens. It’s not unusual for the temperature to sink to ten, twenty, even thirty-below with the windchill in Wisconsin and Minnesota.
Part of me wishes I had listened to that hesitation. The four winters I’ve lived in St. Paul have been harsh, and not just because of the cold. The first year I dealt with a couple of break-ins and a car accident, the second year we had record snows, the third year I spent writing my thesis, and this last year I went through a painful breakup, and it snowed on-and-off throughout April and each of the first three days of May. Added to all of that, I have never felt settled.
The other big trigger for Raynaud’s is stress––living in flux, making it through graduate school––even during the summer my condition has intensified. I’ve moved four times in the past four summers, and the last time I didn’t unpack all the way; boxes and bags still sit where I left them that first day.
The irony, of course, is that now that I can move away, possibly back to that neighborhood in Brooklyn, perhaps even to the same apartment, I find myself hesitating again. There’s nothing rooting me to Minnesota specifically, but leaving, even if it’s better for my emotional health (New York, Chicago), or my physical health (California, Hawaii), scares me.
I’ve spent the past four years getting acclimated to the Twin Cities, making new friends––like Krisanne––and building contacts for my writing, a network I value. Just the thought of starting over exhausts me. Even if I went somewhere warm, the stress of learning a new place and trying to make new friends might counteract any benefits I might gain by living in a warmer climate. And moving somewhere familiar (but not warmer), like New York, might not help my health much at all.
If I’m being honest, there’s more to my hesitation than just the inconvenience of moving. Many of my reasons for moving back (apart from the graduate program I’ve now finished) are still valid. New York (and Chicago and California and Hawaii) is expensive. My family will never move away from Wisconsin. My closest friends from forever live nearby. My sister and her husband just moved to Minneapolis, and I’m seeing there might be nieces and nephews on my horizon. The region is a great place to raise a family and the people have values that closely align with my own.
And, although I don’t love Minnesota, I love the Midwest and I love being Midwestern.
Being Midwestern, however, also contributes to my Raynaud’s. Living in a colder climate is one of the main characteristics of its sufferers. But I wonder if that’s just because Raynaud’s would only appear in a colder climate; when you live somewhere warm you’re less likely to have a reason to develop it.
I recently learned that at the apartment I like, the one with the heat befitting an old person, or a Raynaudian like me, they’re raising my rent. Again. For the fourth time this year. I have until the beginning of winter to decide what I’d like to do––commit to a lease or pay way more than the apartment is worth, or move, which has added to my conflicted feeling about the area. What do you do if where you’re from––where you live––is hazardous to your health?
Sometimes, when I’m feeling particularly annoyed with how cold my feet get or I’ve tried warming them for several minutes to no avail, I think mean thoughts about my Scandinavian ancestors. I mean, c’mon––you’re already moving halfway around the world, the least you could do is upgrade. Even along the way, you’d think someone would leave the land of 120-degree temperature variances for something milder. More temperate. But, except for a few adventurous outliers, my family is rooted in the Midwest.
But it’s these ancestors who make me love the land of my birth. Part of being Midwestern is having a fierce attachment to family and a quiet pride in place and lineage, and I told everyone who met me in New York that I grew up in Wisconsin. I understand how hard it is to move away from what you know; the familiar landscape of the Midwest must have comforted those early settlers as they transitioned to a strange land, and perhaps the same intolerance of the heat that my father has prevented them from venturing south. Even if I silently curse my roots every year near the end of January, I value my relatives. Like my grandmother, who turned down my grandfather’s marriage proposal when she was 19, because, in her words, “I had things I wanted to do.” They finally married when she was 28, in 1944, when the median marriage age for women was 21. Her confidence and independent spirit are qualities that have stuck with me, particularly in my times of doubt and hesitation. Gram died my first year in New York, and I can’t help but think that some small part of me wants to be closer to her, that this desire for closeness was a contributing factor in why I moved to St. Paul, the city of her birth.
I think about Gram as I walk through the neighborhood where she spent her early childhood, not far from where I live now, or when I pass the duplex where her parents lived after Gram had grown up and borne seven children of her own. My second apartment in St. Paul was less than a block from that duplex, in a mirror duplex down the street. I loved living there and imagining what my great-grandparents must have been like. Did I inherit my sense of humor from them, my “Midwestern wit”? Did one of them suffer from Raynaud’s as well?
For as long as I knew my grandmother, she read two papers: The Eau Claire Leader-Telegram and the St. Paul Pioneer Press. My mother remembers Gram taking her and her siblings shopping in the Cities, and I wonder if Gram felt as unsettled as I do–– her house in Wisconsin and her home in St. Paul. I know she loved my grandfather––“I quit going out with him, but he just kept coming back,” she told me, but there was a smile in her voice and a twinkle in her eye when she said it, like it didn’t take too much for him to convince her to marry him. To stay. Her heart was in two places, just like mine. If only I could carry my body the same way: my core in northern states, my hands and feet somewhere warm.