Browsing Tag

illness

Guest Posts, Compassion, Illness

Angels In Sandwich Shops

June 29, 2016

By Katie Taylor

“I have AIDS,” she whispered, the tears that had dried on her face now mingling with fresh ones as her eyes focused somewhere in between my face and my feet. My arms felt heavy at my sides, and I was uncomfortably aware of the teenage boy behind the sandwich counter watching us.

I reached my arm forward, and she looked up at me. “What’s your name?” I asked.

“Robin,” she said. Before I could say anything else, she grasped my hand tightly in both of hers. “I need money. For my medicine. It’s so hard here. I was in New York, and I thought it would be easier here, but it’s hard here. It’s so hard here. I need the money. I need the money for my medicine, and the shelter’s going to close and – ”

She was talking faster and faster, her voice getting louder with every word, and I didn’t want the restaurant’s manager coming out again. I squeezed her hand, and she stopped talking.

I told her I’d give her what was left from buying our sandwiches. It was all the cash I had in my bag, I told her.

* * *

I’d passed her on my way to a 12-step meeting. That November, in the middle of an imploding marriage and deep in the battle with an eating disorder, I spent several nights a week in community centers and the basements of churches. In simple rooms with a circle of chairs and a rack of pamphlets about how to stop – stop drinking or drugging or eating or sexing or not eating or whatever it was that you couldn’t quit doing. Continue Reading…

Guest Posts, Chronic Illness, Young Voices

Do You See What I See?

April 20, 2016
illness

Note from Jen Pastiloff, founder of The Manifest-Station. This is part of our Young Voices Series for Girl Power: You Are Enough. We are always looking for more writing from YOU! Make sure you follow us on instagram at @GirlPowerYouAreEnough and on Facebook here.

By Kristin George

You see a woman of twenty-five with curled hair and meticulously placed makeup. You see a woman with an assortment of dresses all vibrant in color. You see a woman with a smile lighting up her face. You see a woman who laughs freely and talks candidly. You see a woman who looks your definition of healthy.

You don’t see what I see. I see a woman nearly twenty-six whose body acts years beyond its age. I see a woman who wakes up every day with pain evident in her eyes. I see a woman who goes days, even weeks without ever stepping out of the house because the pain is too great and the effort is too tiresome. I see a woman who spends days in the hospital having procedures and tests. I see a woman who takes nearly thirty pills a day just to try and help her body function properly.

You see eyes lined with makeup. What you don’t see is that the makeup hides the pain in my eyes—the pain that I’m trying my best to hide.  You see vibrantly colored dresses. What you don’t see is my form underneath that fluctuates nearly every day with my difficulty to eat. You see a smile. What you don’t see is that underneath that smile lies anguish and pain. You see health because you can’t see underneath my outward appearance. What you don’t see is how hard my body has to work just to digest food or how hard it has to work just to walk around the house. Continue Reading…

Guest Posts, healing, Illness, Letting Go, Vulnerability

Beneath The Glass

November 12, 2015

By Lauren Randall

I spend most of my time dreaming.  The most gratifying vision I have is of life on pause.  I dream of the world completely stopping for everyone other than me.  What will I do in this static world?

Sleep.  I will sleep.  Nothing more.  Nothing less.

I dream that this sleep will take away everything: the fatigue, pain, neurological damage and every ‘red herring’ that cannot be quantified by the medical community.

I will wake to my ‘old body,’ my teenage body, the one I so shamelessly took for granted.  The body I binged and purged from out of hate, the body surreptitiously stuck on the other side of the glass.

I didn’t think much about chronically ill people back then.  I never wondered about their nostalgia for health, that intense pining their imagination could make so palpable.

For them, life could be this immensely beautiful view through a cracked and clouded windshield; every day spent futilely trying to clean it off from the inside.  Despite the irrefutable knowledge that all that shit is just out of reach, the thought of doing nothing from the other side of the glass likely felt even more deceptively tragic.

I do that a lot.  I refer to ‘them’ without including myself.  I try to clean the glass from the inside knowing it will never fully penetrate the brown decrepit haze.  I am enlightened enough to know that real acceptance –seeing beauty within the cracks and dirt– is where true healing and happiness will lie for me.  But I cannot escape the fight, the quest to see the entire scene.  Sometimes that makes me feel beautifully hopeful, sometimes that makes me feel like I am wasting what is left. Continue Reading…

Binders, Guest Posts, motherhood

Sixteen

September 10, 2015

By Debi Lewis

Sixteen times, I’ve stood at the side of a raised gurney in an operating room and sung my daughter to sleep.

Sixteen times, I could faintly smell the scented oil the anesthesiologists rub inside the mask, the mask that delivered sleeping gas, the oil they put there to cover the smell of the gas, the gas she could still smell and taste, making her grimace until she was overcome.

Sixteen times, I kept singing. Sixteen times, I planted a kiss on her still-warm skin above the mask. Sixteen times, I walked back to the pre-operative room and gathered up my husband and our belongings, and sixteen times I shrugged and stiffly shook the vision of my limp and drugged daughter from my head.

“She’s fine,” I answered my husband when he looked at me, questioning. Though who knows? By then, many times, she may have had tubes down her throat, things pinching and scraping her insides in places I would never see with my own eyes. Fine? I suppose.

****

Sometimes, I must have cried, a little. Most times, I don’t believe I did. The routine of it makes them all blend together; the coffee sipped while we waited, the nausea rising at the smell of a hospital breakfast, the same sixteen pages of sixteen books read a hundred times, all of them dull and timeless. Always, I wondered how she could still be in there. Every time, the clock was a demon, moving slowly as they mucked around with my daughter’s insides. My eyes and mind paced when she was asleep, circling around the room.

No matter the conversations I had while we waited, I walked and moved to the beat of the song I’d sung as she fell asleep, my eyes locked on hers so that, if she didn’t wake up again, my face would be the last thing she saw in this world. She was born into medical equipment, strange doctors’ faces, suctioning, poking, bright light. I would not let her leave like that. Let the end be a comfort, I always thought, and so I always found myself as focused as a yogi at her bedside in the operating room. I imagined myself an angel, a guide, and I stared peacefully into her eyes and sang. I sang lullabies from my childhood and hers; nursery rhymes when she was a toddler; a pop song called “You and I” that she was learning to play on the ukulele. I sang and held her hand and I was not scared. I did not want her to think I was scared. And after I walked out of the operating room, my soul was alert for the sensation of hers, leaving or staying.

So if she asks, “what did you do when I went to sleep in the hospital?,” how can I ever tell the truth? Played cards. Checked my email. Barely noticed the time going by; it was so quick!

**** Continue Reading…

Guest Posts

S–t

March 14, 2015

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By Peter Selgin.

 

“What is toilet training if not the first attempt to turn

a child into a civilized member of society?”

—Rose George, The Big Necessity: The Unmentionable

World of Human Waste and Why It Matters

 

Tube: a hollow elongated cylinder: especially one to convey fluids. People are tubes. This is about the human gut and what passes through it.

Twenty-five years ago I was diagnosed with a supposedly incurable condition known as ulcerative colitis. About five out of every thousand people have it. The disease causes inflammation and ulceration of the large intestine, resulting in bouts of severe bloody diarrhea. Left untreated, UC can be extremely debilitating. But even the best treatments often fail, leaving no choice for victims other than surgical removal of all or part of the big gut and the unglamorous prospect of a colostomy bag.

Until recently for the better part of those twenty-five years I’ve been in remission, with relatively minor digestive complains and no flare-ups. All that changed, or seemed to, not long ago after a routine colonoscopy, at a follow-up visit with a nurse practitioner (the doctor who’d done the exam was on vacation). She told me my disease was not only as chronic as ever, but—despite few symptoms—active. What I’d chalked up to bad digestion was the resurgence of an incurable and potentially devastating disease.

The nurse practitioner’s verdict left me distressed and depressed, contemplating a return to the regimen of draconian (and mostly useless) diets and drugs whose side effects were as considerable as their efficacy, and that offered only some relief, but no cure.

So I did what many do these days when confronted with a nasty diagnosis: I went online. For two nights running, I stayed up searching for the latest treatments for ulcerative colitis. Since my last flare-ups, a couple of new drugs had come on the market, each with a laundry list of dastardly side effects, none offering more than the possibility of remission.

Then, after hours of nocturnal research, I came across something that not only caught my eye, but that made me wonder if I’d fallen asleep and was dreaming, something so bizarre, so outrageous, it would have been right at home with the most transgressive works of surrealist cinema and literature, with Bunuel’s Un Chien Andalou and Bataille’s “Story of the Eye.” A procedure known as an FMT—a “Fecal Microbiota Transplantation.” A shit transplant.

 

Treating diseases with fecal matter isn’t new. It dates all the way back to the 4th century, when, according to Chinese medicine doctor Ge Hong, patients were fed a yellowish broth (“yellow soup”) of fecal matter to cure them of food poisoning and severe diarrhea. Among the many “cures” for the Black Death was one that called for lancing the buboes of the afflicted and applying to them a poultice of tree resin, roots of white lilies, and dried human shit. In the early days of steam-powered vessels, when boilers and pipes exploded routinely, human shit was used as a salve and applied to the burns of Irish trawler crews.

Shit transplants, on the other hand, are a recent innovation. Just over fifty years ago, in 1958, Dr. Ben Eiseman of the University of Colorado published a report in which he described having cured four patients of their life-threatening intestinal disorders using enema solutions of donated “healthy” feces. Since then, similar procedures have resulted not only in complete remissions, but in actual cures for people suffering from supposedly “incurable” bowel disorders, in particular Clostridium or C. difficile, a disease attributed to the destruction of necessary intestinal flora resulting from overuse of antibiotics. The procedure has also been used to treat those suffering from other autoimmune diseases, including asthma and rheumatoid arthritis. The treatment bears quick, if not instantaneous, results, costs little, can be done on an outpatient basis, and poses minimal risks.

All this I learned propped up in my bed long after midnight, my iPad glowing in the dark. Imagine, I thought, walking into a doctor’s office with a nasty “incurable” disease, only to walk out a few hours later with someone else’s shit inside you, cured. It seemed too good to be true.

Continue Reading…

death, Grief, Guest Posts

My Mother’s Appetite.

November 30, 2014

beauty-hunting-jen-logo-black

By Dylan Landis.

Food Could Kill My Mother, But I Respected Her Choice to Eat

If my mother ate, she could die.

She could choke from laryngeal spasm, her doctor said, or, more likely, liquid and food particles would slip down her tracheostomy tube to her lungs and cause a fatal aspirational pneumonia. She was N.P.O., nil per os, nothing by mouth. Even a glass of water could kill her.

But my mother, Erica, wanted everything by mouth: she refused to refuse food. She snuck scraps off my father’s plate at their Sleepy Hollow, NY, apartment: cornbread, pasta, cake. “Without food,” she said, “there is no pleasure in my life.” She hated her new appendages: the blue tube jutting from her throat, from which a nurse suctioned phlegm with a noisy machine, and a stomach tube, thin and flexible as a tail, that hooked up to a feeding pump.

It didn’t take long for her to get dangerously sick. I thought she might die—but she came home from the hospital asking, daily, “When can I eat?” Soon, I would say, lying. When you stop coughing. She’d never stop. When you pass the swallowing test.  She’d never pass. They gave her sips of water and she choked. Her hands lay still in her lap when she asked me about food. Because my father, too, was in a wheelchair, only I had the ability to make her a cup of coffee, a half cup, even a quarter cup, in one of her delicate porcelain mugs adorned with birds. I felt guilty, not like a daughter but a parent. Her own mother had been tyrannical; she didn’t need that from me. When my mother was a girl, anything she refused to eat would appear at the next meal, and the next, and the next. Her mother always won. Continue Reading…