My Skin Is Screaming

I dim the lights in the bathroom as the faucet roars and fills the bathtub with cold water. I plug the drain before I unwrap a fringe scarf from my neck and pull my sweater up over my head and toss it to the ground. I quickly turn my back to the mirror and crane my neck to examine the skin on my shoulders — fiery, swollen, pink patches of hives, cover my shoulders and spine down to my lower back.

I take a deep breath and close my fists tight to avoid touching the burning, swollen patches of skin. Instead, I turn my body into the light, illuminating my stomach where more clusters of swollen red skin are beginning to form. I clench my fists tight, clench my jaw, and watch my knuckles turn white from the pressure as I attempt to resist touching my flaming skin by recalling the on-call nurse’s words over the phone, just minutes ago, as we discussed my current symptoms:

I insistently exclaimed, “My skin literally feels like it’s on fire…”

As the nurse calmly replied, “Well, for now, try not to touch them.” I rolled my eyes, put her on speaker phone, and sat on my hands as she walked me through a series of general allergy related questions:

“Have you changed skin care products?

“How about a new laundry detergent?”

“Perhaps a new piece of clothing with a material you are not used to?”

“Have you eaten anything unusual?”

To all I replied “No.”

“You know, reactions like this can also be stress related.”

I quickly pushed back, defensive, “But I’m not stressed.” I stated, “I mean, yes, I have had reactions like this when I am under stress, like when my daughter is sick or something crazy is happening….” I trailed off as I began to mentally recall other instances of my skin erupting into hives; my daughter, Nora’s, second admission the ICU, moving my family into a new home the weekend before Christmas, the night before Everett’s (minor) surgery, occasionally when Nora comes home from the hospital, almost any trip to the ER, or when Nora has increased seizures for no apparent reason.

I continue to talk, “It’s just been days of this — I’ve never experienced anything like it before, and everything is fine! Sort of…for the most part….” I trail off as I consider Nora’s current unresolved list of medical problems, and all the ways her body is under stress: her GI issues, or the reality she (still) has uncontrolled, almost daily seizures, her fatigue and sleepiness. All issues, my husband and I, and probably even some members of Nora’s care team, carry as “unresolved” extensions of ourselves. And then, of course, there is the reality that I can’t seem to manage a flooded inbox, prioritize Everett’s preschool snack sign up, promptly respond to voicemails or text messages, create sustainable household organizational systems for my son’s hot wheels, or Nora’s leg braces and shoes, or get anywhere on time (without a speeding ticket), with two (happy, dressed, and alert) children, G-tube pump and feed, medications, and an apple juice, a water bottle, and goldfish for Everett.

“I mean it’s always going to be something, right?” I tell the nurse.

“Yes. And you know, stress can be just day-to-day stress. Just keep that in mind. For now, why don’t you take a cold bath to help with the itching — heat will only make it worse. You can apply hydrocortisone cream three times as day. Please call us back if your symptoms worsen, or if you are still having trouble over the next two days. Happy New Year!”  

I unclench my fists, push the nurse’s words aside, and keep my hands busy by reaching for a box of matchsticks, and a candle, from a bathroom shelf. I light it and set the flickering flame delicately on the countertop near a mug of piping hot water. I reach for a tea bag in my jean pocket, rip it open and dunk it into the mug. The tea dissipates as the color of the water changes to amber brown. I impatiently drag the bag of tea through the water in a circular motion, attempting to rush the steeping.

The little square of paper attached to the teabag string is printed with one word: Renew. I almost laugh out loud. Because today, as I stand by a bathtub filling high with icy water, as my skin burns with hives, the only thing that feels renewed is frustration, disappointment, and even anger that my body— my own skin — is failing me. But of course, I know it’s not just frustration with my body — it’s unresolved heartache with Nora’s body. A body that, despite all the treatments, and therapies, modern medicine has to offer, will not allow my beautiful daughter rest. A body that has, since she was three-months-old, raged with seizures. A body that fails her again and again, day after day, as she lives with chronic conditions interwoven throughout her brain, lungs, and gut. A body, that at 5-years-old, just doesn’t seem fair.

I reach my hand into the water, testing the temperature, “Wow, that’s cold” I whisper out loud and think to myself, let’s just get this over with, knowing I am on the verge of tossing the nurse’s cold bath suggestion out the window, but also knowing I am desperate for a solution to soothe my flaming skin. I quickly remove the rest of my clothes, grab my tea, and sink into the tub. Goosebumps erupt across my shoulders, and for a moment, my skin flames in the tension of warm air and icy water — I quickly set my tea aside and decidedly sink further into the tub. The chill of the water takes my breath away as I submerge my entire body, all except my face— my eyes, nose and mouth.

I close my eyes tight and start to count to ten — remembering that almost anything is possible in batches of ten seconds. 1… 2… 3… I feel my body relax as I count. I feel my hair, weightless, hover around my neck, shoulders and chest, I hear the underwater noise of water passing though pipes — slow turning gurgles and vibrations moving through the bones and waterworks of my home until the sounds evolve into compressed nothingness — underwater stillness. I stop counting and take a long, deep, breath. Inhale. Exhale. Suddenly, my eyes open wide as I hear the clear, amplified, overwhelming sound of my own breath. I take another deep breath and this time, I smile, realizing, I haven’t floated belly up in water, in what feels like a lifetime. I forgot the sound, this sound, of my own breath. I continue to breathe, memorizing the vibrations of each inhale and exhale, absorbing movement of water rippling and lapping against the side of the tub with each inhale, noting the stillness of my surroundings and the calmness of my mind, body, and even my skin. I continue to float until my mind begins to slowly wander as I wonder just how long it’s been since I stopped to listen to my breath —to my body. A body screaming, through flaming skin, not just to be heard, or even seen, but listened to.

I sit up and splash water on my face as my wet hair falls across my shoulders and chest and I reach for the tea. I take a sip and hold the now crinkled tea bag paper in the palm of my hand, staring at the word “Renew.” The word stares back at me. I smile in return and say, “You my friend are a very important word, and an incredibly important practice. Let’s float more often in 2020.” I take another sip of warm tea before I slowly sink back, deep into chilled water, and breathe.