Browsing Tag

illness

Grief, Guest Posts, healing

I Made Peace With My Body And Found My Soul

December 15, 2019
body

 By Lisa Poulson

The house, above the village of Saint-Saturnin-lès-Apt, is set on a hill overlooking the whole Luberon valley. Climbing roses cling to its traditional Provençal stone exterior. In California, a plant with just one or two flowers seems in ill health, but here a single blush rose on a vine by the front door feels like beautiful simplicity.

The chic and spare interior is layered with thick coats of pale plaster that curve around me as I walk up two flights of stairs to my room. It’s my first time in Provence, with six girlfriends in this wild, raw and beautiful part of France.

There are wide, cool terracotta tiles, a velvety duvet and no curtains in my bedroom, which is on the third floor of the house, facing the valley. After I settle in and unpack, my friends and I have our evening meal at a long, rough hewn dining table under a tree on the patio. It’s the first week of May. A hint of the Mistral rolls through the hills. I haven’t felt this peaceful in a long, long time.

The next morning, the barest hint of dawn through my uncovered windows wakes me. I smell the remnants of my Diptyque Pomander candle before I open my eyes. I turn my head toward the window and, drowsy and semi-conscious, am immersed in exquisite beauty.

It’s a little chilly as I sit up in bed to watch tender pink light emerge from a piercing bluish fuschia, to see the tall trees shift from shadowy black to darkest teal, to see the rows of lavender on the hill opposite our house emerge from the darkness. The mountains beyond the hills are a Pantone palette of dark to lighter slate blues. Birds are singing. The wind is soft. This dawn is as delicate and rich as Venetian velvet.

After several minutes of watching the colors change and the light bathe the whole scene, a voice, insistent and gentle at the same time, says, ‘If you didn’t have a body, you wouldn’t be able to experience any of this beauty. Not one bit.’

Sitting in my sleep-warm bed, bathed in this exquisite sunrise, I feel peaceful enough to simply accept this truth about my body without argument. As the sun’s light turns the trees green I roll this idea around in my head, thinking about what beauty means to me. Everything. Beauty means everything to me. I’m almost breathless as I absorb the blindingly simple truth that I can only experience beauty through and because of my body.

I am 56 years old. I’ve had a fraught relationship with my body since I was a tween. And yet, in this moment, seduced by the serene Provençal beauty all around me, I reorder what I feel and believe about my body, what it is for, what it has given me, why it’s a miracle.

 ***

It’s been a long and grinding road. I was 10 when I first doubled over with burning pain on both sides of my gut. It wasn’t until my twenties that I got a diagnosis of Irritable Bowel Syndrome, which gave me a name but not a solution for the boiling distress that turned my body into an incomprehensible ‘other’, a caustic alien that delighted in causing havoc on dates, before job interviews, at baseball games.

At 30, the man I loved was killed after the Coast Guard helicopter he was piloting crashed into the Atlantic. We had been engaged for two weeks. Grief came in molten waves that would growl and stretch, enveloping every part of me. I never knew when my body would start sweating and shaking, drowning me in unbearable sorrow. When grief descend my only choice was to submit to being ravaged.

About a year after my fiancé died I went on a date, thinking it was time to “move on.” But at the end of the evening when he leaned in to kiss me I panicked. Another man having access to my delicate mouth was more than I could bear. I ran up to my apartment and burst into tears.

In the midst of this emotional disarray I accepted a job offer in Silicon Valley. Just 15 months after my love died, I left New York City and all of my friends behind. In a strange place, with few friends, tons of work pressure, and carrying a mountain of grief, I turned to food, the most reliable and consistent comfort I knew, and buried myself. I gained 75 pounds in six months.

My gut tormented me, I came down with mononucleosis, my head raged with migraines. I felt trapped inside a body that hurt and humiliated me daily. With bitter self-hatred, I told myself that this body, this alien saboteur, was a billboard for my weaknesses as a person. I didn’t deserve amity with my body, I wasn’t strong enough or good enough to be free.

By the time I was 35 I was emotionally numb, physically miserable and nearly 100 lbs overweight. I was in New York on an exhausting business trip. I stumbled into my hotel room and collapsed against the side of the bed in my underwear, my short legs splayed out in front of me. I stared at my undressed body in the wall of mirrors that were the closet doors. I watched my piles of flesh undulate as I breathed in and out. I forced myself to face everything in the mirror. My legs, my belly, my double chin. My lip curled in revulsion as I stared into deadened eyes. I hated everything about my life. My job. My body. Myself.

Eventually I lost the weight, but I couldn’t love and happily inhabit my complicated and demanding body, where the alien still reigned. In my 40s my career grew and grew, but inside my body was one long repressed scream of rage and frustration. I wanted to swear, to smash things, to scream and shake, to quiver and whimper with passion, to drown in and be intoxicated by love and lust. None of those things happened. Because I am a member of the Church of Jesus Christ of Latter-day Saints, and a proper Mormon girl does not do these things.

I could have gone to the gym every day to expel that pent up desire, anxiety and anger. But a completely numb body is easier to manage than a body that is partially awake. A body that is awake and vibrant and beautiful wants things. Things a Mormon girl can’t have. So instead my weight yo-yoed. My gut burned. And then I got eczema – the skin on my palms became raw and started to peel off. My spirit was choked in a body I refused to love. I was a broken soul.

***

During the next decade I patronized several spas, worked with a cornucopia of health practitioners and healers, tried so many elimination diets. Sometimes I looked better, sometimes I felt better, sometimes I had beautiful moments of connection with my body, usually at an expensive spa after a luxurious treatment. But back in my real life, every time there was a new injury, every time my IBS flared up, every time I gained weight, I blamed the alien, the mute and malevolent force inside me who seemed determined to hurt and undermine my every effort to heal. I saw no way out.

But in late 2016 the movie Arrival hypnotized me. The heroine, a creative, accomplished linguist, was asked to interpret the language of aliens called heptapods. I drank the movie in, read Ted Chiang’s The Story of Your Life on which the movie is based. I thought and thought. What if my body is like a heptapod, a benevolent and complex organism with miraculous gifts to give? Was it possible that within my body I’d find a wisdom that would transform me if I could just learn to speak and listen to its language?

***

That late spring morning in Provence, watching that glorious sunrise, was the first time I heard and understood a sentence in heptapod. ‘It’s your body that gives you the gift of all of this beauty.’

For decades, I had only seen what was wrong and broken – I thought my body was 90% a disaster. I did not see that the things I love – color, art, music, flowers, the scent of perfume, the feel of cashmere on my neck – only come to me because I have a body. My body isn’t a crucible of humiliation and frustration, it is a miracle.

I let the slow and pure beauty of Provence work on my nervous system. Everything there taught me the simple joy of living in a body in the world – fresh goat cheese drizzled with new olive oil and tiny flowers, earthenware vases filled with hardy irises, fields of red poppies shimmering in the breeze, baby green leaves on grape vines that aren’t manicured into antiseptic perfection.

At the end of a week there, after several more ravishing sunrises and sunsets, after living among a people whose lives are bound up in the beauty of the land, I came home to California with a changed heart.

There’s a calmness between my body and me now – the anger and shame have been replaced by a patient, warm affection for the wise heptapod who is teaching me a new way to live. I am learning what it feels like to move through the world with a partner – a wise and remarkable heptapod who has always been with me, every moment of my life. I am whole.

Lisa Poulson is a voice in favor of the complex beauty of female power. She is the descendent of fiercely resilient pioneer women who crossed the American plains with their children – even after their husbands died along the way. She is a successful Silicon Valley PR veteran and a woman who survived her the death of her fiancé four months before their wedding day. Lisa lives in San Francisco, where she spends her free time absorbing and creating as much beauty as possible.

Upcoming events with Jen

~~~~~~~~~~~~~~~~~~~~

THE ALEKSANDER SCHOLARSHIP FUND

chronic pain, Guest Posts, Hope

The Shame of Pain

October 24, 2019
pain

By Francesca Louise Grossman

I have tried 46 different times to launch myself out of chronic pain. I know this because every time I try something, I write down what I have done, what it feels like, what it costs, whether it’s covered and how worth it is in a small purple book. No one knows I do this. I scribble in it like I’m confessing to my sixth grade diary. In it is the same kind of anxiety about the future that I had in sixth grade, just not about Andy Apstein and whether he was going to kiss me or ignore me. Instead, it is about the treatment or therapy I try, and whether this one will be the one to finally help.

I opened the book the other day to pen a possible 47th.

The book is chronological, of course, but I put it in alphabetical order for clarity. I flipped through.

It starts:

Acupressure: December 2010 – Feb 2010 – dull pressure, not much change, $120/hr not covered – not worth it

Acupuncture – July 2002 (on and off) until March 2018 – sometimes painful, usually calming, blood flow, lasts less than a day but is relief $75/15 mins – sometimes covered – worth it but has to be ongoing

Acetaminophen – When needed – does nothing – over the counter – $9.89 a bottle of extra strength – not worth it

Bioelectric Therapy – October 2016-April 2016 – possibly dulls pain a little – for about an hour $165/hr at office – not covered by insurance

Cupping – February 2014 – one time, hurt like hell, not worth it. $85/30 mins – not covered by insurance.

Codeine – March 2009 – April 2009 – numb, good, not a long term option – covered by insurance $20 copay

Craniosacral Therapy – September 2000 – October 2001 – When in conjunction with other body work  – Myofascial etc – decent relief but dizzy – lasts a couple of days maybe $200/session – sometimes covered by insurance

Cryotherapy – June 2018-October 2018 – feels great right after, like putting ice on a knee. Lasts a couple of hours, heart races. $60/3 min session. Not covered by insurance

And on and on—and on.

The book is 24 years old. The same age as my chronic pain, more than half my lifetime, all of my adulthood, eons.

This book exists because all this time I have had a continuous faith that there is a valve for this pain; that I can escape it, or, more accurately, it can escape me. For all these years I have I known this to be true. I will find it. I will heal. I am a warrior, a survivor; tough, strong, and able. People have told me that pain is weakness leaving the body in all different scenarios, with all different motivations. I don’t have this recorded as studiously but I wish I did.

I have other lists I don’t love revisiting, but help to explain the pain. In my twenties I was diagnosed with Crohn’s disease, an illness of the intestines that leads to violent pain and an urgent need to empty your bowels. I developed Colitis later, a more general type of the disease that bloats my stomach to look four months pregnant. I have had surgeries for my stomach, some of which were determined later to be unnecessary. I had thyroid cancer through out my twenties, finally treated when the tumor on my neck was the size of a ping-pong ball. I developed arthritis along the way, both as a peripheral malady and also it’s own disease. My body is gouged from piles of polyps removed from my insides, and (usually) benign tumors removed from my outsides. My neck doesn’t turn all the way to the right. My hips need forty-five minutes before letting me walk in the morning. I have an unidentified liver problem that swells without notice and bends me in two. If the saying is to be believed, there’s a lot of weakness in there, and it seems to be stuck.

*

When I was twenty-nine, I had surgery to remove my thyroid. The overnight nurse was a doozie of a lady.  Opera singer large, big calloused hands that vice-gripped onto my shoulders. Thighs thick as trunks that she used to pin me against the side of the bed so she could administer my catheter without “so much squirming.” She was brutal and brutish. A small silver peace sign sunk deep into her cleavage, drowning in flesh.

She had a hard time getting the catheter in, and as she struggled, she noticed my twisted face.

Pain is weakness leaving the body, my love, she said, repeating it over and over like a command until I could actually pee.

This is an extreme example, but at least once a year, often as much as once a month, this phrase earworms into my psyche. Related to illness and chronic pain or not, this saying has appeared like a subtitle again and again at the bottom of the screen of my life. When I was a weak child? A coach. A teenager who could not stomach even occasional beers? A boyfriend. A young woman unable to go to a bar without scoping out the bathroom situation ahead of time? A roommate. A thyroid cancer patient: a nurse. Doctors, PA’s, med techs. Physical therapists, friends, masseuses, acupuncturists, pharmacists, bosses, guy on the street.

*

I went to the doctor a few weeks ago and a delicate med tech took my vitals. She asked the normal questions, made the normal small talk, took the normal introductory tests. Her thin fingers flew across the keyboard, recording my responses. She asked me if I had any pain.

I wasn’t sure I heard her correctly.

“You mean right now?”

“Yes,” she smiled softly.

“Nothing acute,” I said.

“So no pain?”

“No. I mean, yes, I have pain, the same pain I have all the time.”

“What would you rate it, 1-10?”

How do you rate pain on a scale made for people with no pain?

“I don’t know, 4?”

She nodded and her hands took off. That was the wrong answer. I knew this, I knew that anything under 5 wasn’t worth her noting, that saying 4 was like saying I had a dull headache, or a splinter in my toe. But what should I have said? 7? Wouldn’t that be alarmist? Especially when that pain had been a relative constant for over twenty years? Especially when I knew from decades of experience that the litany of potential remedies for that pain were not going to help?

*

My husband stepped on a quarter inch wire sticking out of the ground near the beach in Fire Island this summer. The metal went a good inch into his flesh, and when he pulled it out blood sprayed mercilessly all over the sand and sidewalk. He howled. He made noises that I have never heard him make before and I have been with him through a lot of painful things. He was pale and sweaty, teeth gritting, eyes rolling back, that kind of pain.

Later that night, his foot gauzed up and iced, still throbbing, he looked at me and said “I’m so sorry you are in pain all the time.”

I didn’t know how to respond. This wasn’t about me, he was the one in pain, and yet a part of me felt smug at his discomfort. Now you know how I feel, was a momentary thought, I’ll admit it, and not one I’m not proud of.

But it got me thinking about pain and the way people relate to it. It is very hard to relate to pain if you aren’t in pain. Which is why I have such a hard time with the 1-10 scale.

Instead, for chronic pain patients, they should ask what kind of sharp thing is in your foot. Splinter? Pushpin? Nail? Quarter inch wire? Razor blade? Glass shard? Burning glass shard?

Nail. I would have said. Occasionally glass shard.

But instead I said 4 and she smiled.

*

I have fought against my pain and weakness for a very long time. I have tried, often unsuccessfully, to be like my friends. In my twenties I tried to stay out all night, I tried to ski, I tried to walk down the street without doubling over. I worked, I played, I drank, I sat as still as I could so that no one would notice the aftershocks. In my thirties I had children, pregnancy an event that paused my pain for a while so that when it came back it felt like a tsunami. Like many mothers of babies I didn’t sleep and then I had severe postpartum depression; I found having small children so physically demanding I came undone. I’m forty-one now and I am very often a prisoner in my house. My stomach bleeds, my liver pulsates, my head spins. Not all the time, but enough.

From my teens until today, this minute, and all those in the foreseeable future, there is pain. At least nail in foot pain. Sometimes glass shard. Never pushpin. A splinter would be welcome. In fact, when I think back on my childhood and that which was difficult – most sports, endurance, gym class, partying, anything else that required my body to function – I think it’s possible that I have been in pain all my life. Back then I never considered that my resting state was anything less than normal, but now I know better. Most people do not live with nails in their feet.

I hurt. I hurt in the morning when I turn over to get up. When I walk, when I carry groceries, when I turn my head to the right to reverse in the car. My stomach burns, my joints swell, my liver rejects everything I eat and drink.

I don’t talk about pain very often. I tell myself it is because people don’t want to hear me complain but it is more than that, I can admit that. I’m ashamed of my pain. I’m ashamed of my weakness.

What is it about pain that is so shameful?

We live in a culture in which wellness equals strength. People my age do cross fit and triathlons, women have babies without drugs, are lauded for their tight abs, their thick skin, their ability to play tough. I have never been strong like this. I have tried, but I have failed. I was never scrappy. I don’t think I will ever be. I am soft. My belly, the place of much of my pain, is squishy. Distended, bloated, doughy, depending on the day. I’m sensitive. I cry at pop songs.

Our society’s greatest hero story is about overcoming obstacles. We love a fighter. We love an underdog who comes out on top. We love triumph and happily ever endings. We love to fix a hoarder, intervene and send someone to rehab, remodel a decrepit house. We love treatment. We love survival. We love hope.

But hope is complicated. After all of these tries, this list of 46 different treatments and therapies, I no longer have hope that things will get better. I have hope that things will not get worse, which is not the same thing. I have a hope that feels a lot more like mercy than it does like faith.

When I ask myself this question about weakness and shame I hear a quiet hum suggesting a better question: why am I fighting so hard?

In my experience, pain is not weakness leaving the body. I realize this is a trope, and any mantra is nothing more than a slogan. But slogans have power. They convince. And I’ll admit I have always believed this – that the suffering I endure might one day let me free.

When I was pregnant and exhausted, a friend of mine told me that of course I was tired, I was making a person in there. Though not the same, pain sometimes feels like that too. Of course I’m tired, I’m fighting against myself all the time, trying to quell the pain so that I can live my otherwise fortunate life.

I’m not delusional about this. I know I live a charmed life in almost every way. I am educated, from a family that loves me – even when I behave idiotically. I am not from a country ravaged by war. I have a husband who cares for me, does not abuse me, even dotes on me sometimes. I have two healthy children whom I adore. I am from a privileged minority, I have more than I deserve. I can walk, breathe and think to exist in my daily life. I can afford therapy, eastern medicine, treatment outside of insurance sometimes, to do part time work. I can try 46 things. In short; I’m lucky. Unfairly so. And yet.

Here’s the whole list, abbreviated to just the titles:

Acupuncture, acupressure, acetaminophen, alcohol, aleve, aromatherapy, bioelectric, CBD creams and oils, cupping, chiropractic, chanting, codeine, cranial sacral therapy, cryotherapy, dairy free, hallucinations, gluten free, guided breathing, fasting, fentanyl, flotation, ibuprofen, oxycontin, marijuana, massage, meditation, myofascial, quell, reflexology, radiation, salt baths, saunas, steroids, sugar free, sodium free, sound bathing, surgery, swimming, percocet, physical therapy, psychotherapy, psychiatry, praying, vicodin, xanax, yoga.

Everything helps a little. Nothing helps enough to be worth the life altering work and piles of money it takes to keep it up.

Here’s a truth: the things that actually take the pain away feel a lot like addiction. They don’t remove the pain, that’s the trick. They numb. And they are delicious. But they don’t last and they unleash other pain, often more severe that the original. It’s never worth doubling the pain tomorrow to have numbness today, no matter how attractive the reprieve.

So the pain is there. It’s always there and most likely it will always be there. I don’t know how it got in. Maybe the pain was waiting for me when I came into this world. Maybe it comes from my ancestors, my DNA, my parents’ tragedies, my childhood bullies, or little or big assaults. Maybe I am sensitive to the world for some reason, and it simply hurts to be here. As woo-wooey as that sounds, that’s the one that feels the most accurate, the most likely.

I think it’s actually softness that makes us strong. It’s not skin made of iron. It’s showing the underbelly. It’s not bracing for the storm, it’s putting a kite up in the wind. It’s the willingness to see the world as a series of experiences some of which are going to hurt like crazy and the ability to just keep going anyway. It’s vulnerability. It’s asking for forgiveness. From ourselves as much as from others. It’s mercy.

Mercy is an open palm. It’s the meaty bit. Curling your hand so that your knuckles face the world is so much easier. But a fist to heart feels quite a lot different from a palm to heart, resting square on your breastbone, staying there, the heel of it pulsing the same rhythm as the heartbeat on your chest, marching your body along in a long trek to some sort of quiet absolution.

My husband’s foot healed in a few days. He stopped limping. The knowledge that he would get better permeated and defined the experience – the faith that this would be over soon.

Therein lies the difference between acute and chronic pain, of course: in how we define hope.

So what kind of hope can I have? What if I looked at my years and piles of pain and perceived weakness not as a failure but as a step towards becoming who I am? What if I forgave myself the years of fighting myself and sank into the deep cool water of acceptance? How would it feel down there?

I do not mean that I should give up. I’ll try things if they look promising. 47, 48, that’s fine. But what if instead of fighting so hard I allowed the pain to be part of me? What if, for a while, instead of the restrictive eating and the therapy and the medicine and the exercise and the planning and the trying (and the failing), what if I just stopped? Even if it hurt? Even if the pain never left? Could I recalibrate to “0”? Could I see that as the most radical act? Doing nothing at all?

For now I’ll put the little purple book in the drawer. I’ll cap the pen and sit quietly. I’ll let what’s in me stay put. I’ll put my feet up, expecting and accepting the pulse of the nail that might be forever lodged there.

Francesca Louise Grossman is a writer and writing instructor based in Newton, MA. Her work includes contributions to The New York Times, Brain, Child Magazine, Word Riot, Drunken Boat Literary Magazine, xojane, Kids in the House, Ed Week/Teacher among others. She is currently working on a memoir and a novel. 

 

Upcoming events with Jen

****

THE ALEKSANDER SCHOLARSHIP FUND

Chronic Illness, Guest Posts, parenting

Little Elephant

December 12, 2018
elephant

By Amy D. Lerner

You know the story of the blind men and the elephant? They’re trying to figure out what this creature is in front of them. Each of the men feels a different part of the elephant, the trunk, the foot, the tail, and describes the elephant based on only that one part. They each come up with wildly different ideas about what an elephant is, and not one of them sees the big picture, the whole elephant.

My elephant is only 3 feet tall and 35 pounds, yet this story is still true.

Like many people, I make up stories and make metaphorical leaps, from an elephant to my four-year-old daughter, without even thinking about it. My mind is a runaway steam engine—I can’t help thinking of that image—and metaphors are the coal.

“The way we think, what we experience, and what we do every day is very much a matter of metaphor,” write George Lakoff and Mark Johnson in Metaphors We Live By, the seminal book on thinking in metaphors that was published in 1980. We tend to speak and think in metaphors without being aware of it and without stopping to think about how our metaphors are guiding us, but they are, Lakoff and Johnson insist.

Studies have shown that by thinking about the story of the blind men touching the elephant, it’s as if I’m actually touching the wrinkled and rough skin of an elephant. In other words, metaphors are stored in the same part of the brain as the things they represent: the idea of kicking the habit stimulates the same motor area of the brain as kicking a ball does. Metaphors are deeply embedded in our minds, and they’re linked to the most basic human functions. Continue Reading…

Forgiveness, Guest Posts

Forgiving the World

February 12, 2017
hate

By Lori Holden

We sit on the floor in criss-cross applesauce at the beginning of yoga class, and our teacher instructs us to close our eyes and remember a time during childhood when we were hurt or scared in order to find if there are areas in which we need to release and to forgive. Her soothing voice and evocative words take each of us back to address our own personal boogeymen, troubles that loomed large because we were so small.

This won’t work, says my inner voice. I’ve already exorcised all my demons.

I open my eyes and peek around the room, surprised that my fellow classmates are going crimson in the face as strong emotions rise from their bellies. Something powerful is going on, and if I can surrender my thoughts to my emotions, I may have the chance to release something I’ve carried for a very long time.

Hah, that’s what you think! comes a reply, also inside my head.

With an exhale I allow my hips and tailbone to feel heavy, to sink into the earth. With an inhale I lift my spine, filling the space between my vertebrae with, well, more space. In an instant… Continue Reading…

Guest Posts, parenting, The Hard Stuff

To Tell A Happy Story

December 30, 2016

By Steve Edwards

Early on there were nights I thought my son might die, and I thought it might be better for us all if he did. If on those nights his crying ebbed and his breathing stilled, I would lie in bed waiting, listening, the way you lie and wait and listen if you suspect an intruder in the home. I imagined Rebecca at the funeral, out of her mind with grief, and how in the days that followed sorrow would be all we knew, until one day—years later, perhaps—we would have made our peace with what had been taken from us. I kept this to myself and it skewered me because I loved my son like nothing else.

Had he been born with some physical problem? Some incurable disease? No. Aside from mild jaundice and a hemangioma, the doctors pronounced him perfectly fit and we brought him home to begin the life we had been imagining for so long. The life of a happy, healthy, and loving family.

The trouble started that first week when Rebecca’s milk didn’t come in. We bought the special nursing pillow, the pumps and bottles. We went to a lactation consultant. Maybe our son wasn’t sucking right, getting a good seal. Or maybe Rebecca needed to pump more often. Or maybe, the consultant finally suggested, Rebecca was suffering post-partum depression and wasn’t trying hard enough. Not ten days before, Rebecca had had a completely natural childbirth—not so much as an aspirin crossed her lips during labor or delivery—and it wasn’t painful, she assured me, but joyful, full of love. And even that first night in the hospital, when our son couldn’t stop crying and we didn’t have a pacifier: I stood by his crib and let him suck the tip of my thumb for over an hour because somewhere in our copious preparations we had read that this might comfort an infant. My wife and I are people who try our hearts out. But you can’t try to make milk come in. It comes or it doesn’t.

When our son began experiencing colic-like symptoms—“inconsolable crying, distress, irritability, sleeplessness”—our pediatrician told us we had gotten unlucky but that it would pass. We tried to laugh it off. We smiled through our tiredness and the well-meaning comments and teases from family, friends, elderly checkers at the grocery store: about how hard it is, how it would get better with time. We looked forward to when he would surprise us by sleeping the night.

As the first wearying, wondrous days of his life turned into weeks and months, an edge crept into his voice. He started screaming. He screamed every day, screamed, at such a high pitch and volume that if he screamed as I held him on my shoulder after a feeding, my ears would ring for hours. He was a shrill, writhing knot of muscle. Still too young to lift himself up on his arms, he somehow found the strength to buck his entire body away from us. We laid him on the changing table, on a blanket on the floor, on a couch cushion, on a chair, and we turned on ceiling fans, radio static, music soft and loud, and always—his face puckered and red, his tiny hands curled into fists—he wailed. Often without shedding tears. During the first snowstorm of his life, I rushed him outside thinking the dizzying zigzag of snowflakes might calm him down. It didn’t work. Nothing worked. In our exhaustion and fear, Rebecca and I argued bitterly until we lost even the words to say why we were mad or what was happening to us. Or to him. Or what we should do now. We were attached parents—devoted, gentle—and we never once touched our son in a way that wasn’t loving. But as three months turned to six, nine, and twelve, an instinctual, insuppressible rage sometimes welled up in me, and I slammed doors, kicked over chairs. On bad nights it took everything I had not to bend down and scream shut up into his little face. Not to fling him across the room.

At the doctor’s office we put on a brave front and did not complain. Down deep, of course, we were incredibly scared. After having dragged ourselves in multiple times for vaccinations and well-checks that provided no remedy or respite, we debated: Should we go again? Will they be able to tell us anything this time? Are we going too often? Finally, we brought in a cellphone video of his screaming, evidence that to us clearly meant something was wrong. Nonsense, our pediatrician said. He’s going through a “screechy” phase. Stretching out his vocal chords. The footage of his full-body convulsions on our changing table at home didn’t alarm her in the least. She prescribed an antacid and said we could try to make him “a little happier.” He was still steadily gaining weight after all. And after doling out a few final pieces of advice, she quickly excused herself.

On our way home that day, Rebecca wept in the car and said she felt like an abuser. We could not save him.

For our own survival, we fell into shifts. Since Rebecca took care of so much during the day (feedings, laundry, dishes, bills, her own work as an editor) while I taught my writing classes at the University of Nebraska, I picked up the slack at night. When his crying started at one, two, three in the morning, I rose and went to him. I changed his diaper. I tightened his swaddle blankets. I rubbed his little back. If he had spit out his pacifier, I put it back in his mouth. I held him in my arms and sang in a whisper. And always my mind went down the ever-growing checklist of what could be wrong. Was he hungry? Thirsty? Was he too cold? Too hot? Did we need a white-noise machine to imitate the sound inside the womb? Did we need to let him cry it out? Was he napping too much during the day? Was he overstimulated? Was he just fussy? Spoiled? Trying to manipulate us? In those moments in the darkness, alone with my son, I blamed myself for never having an answer that helped him.

Other men pulled off fatherhood with such grace and humor, and with multiple kids: the difference, I thought, had to have been me. Our son’s crying was a problem because I wasn’t patient enough. Because I wasn’t man enough. The thought that he might die, that it might be better for us all if he died: I saw it as a personal flaw, and the night shifts were my penance. Sometimes he slept for an hour or two between crying jags. Other times it was only ten minutes. Rebecca would roll over, drowsily ask if I needed help. But if the two of us got involved, half-asleep and tense, it could lead to a fight, and that was the last thing we needed. I would tell her I was already up, that everything was fine, that she should rest. To keep myself awake I shouted into my pillow, punched myself in the thigh. Whatever it took. Again and again, over weeks and months that slowly turned into a year, then two, I rose in the night and went to our son.

***

Through it all we were compulsive about documenting his good times. We kept a camera with us and were ready at a moment’s notice when any smile, like a ray of sunlight, passed over his face. To tell a happy story about our child, even if slightly fictional: we needed that. For all of his desperation and pain, he was still an incredibly beautiful boy. Dark blue eyes and soft honey-blonde curls. Chubby dumpling cheeks inherited from Rebecca’s Polish family. He was the baby strangers at the grocery store, men and women alike, stopped in their tracks to coo over, who people called a little doll. Rebecca organized our pictures of him on Facebook to share with friends and family, and in any spare moment of downtime she and I found ourselves scrolling through them, hungry for the lives of wonder and enchantment the pictures suggested.

And, yes, there were the rare good days: the times we put him in the stroller and, one foot in front of the other, walked the neighborhood. There were the days we stopped to chat with friends down the street about Nebraska football or the weather. He would sleep a bit, then wake and keenly take in the world, and even play peekaboo and giggle a little. We began to wonder if it were all in our heads.

I remember one day we came home at dusk to the sound of a robin chirping in the maple tree in our yard, and that sound—those gurgling chirps—lifted me out of myself, out of my pain, out of despair.

Other days I managed to write for an hour or two, or garden in the backyard, or cook Rebecca a nice meal and chat with her in the evening as we watched television. For those few hours his screaming and screeching, his terrible sleep, as well as his new symptoms—the eczema scarring both his cheeks and forehead, his distended belly and disgusting bowel movements—belonged to a distant, harmless past. On the good days we were as optimistic as we had been on the night he was born.

Unfortunately, there was no method for inducing one of those infrequent good days. What calmed him on one occasion could provoke him on the next. If one thing went wrong—if none of our bottles were clean and we had to wash one before feeding him, and, if in the time it took us to wash the bottle he started to cry—nothing brought him back. Theories about his pain dominated our talk. We got different brands of diapers. We changed formulas. Changed detergents. We got him softer sheets and an organic mattress pad. We put him to sleep in his crib in his room, in a swing, in a co-sleeper by our bed. We put him to bed early, kept him up late. Fed him vitamins, a probiotic. Every minute of every day was consumed by the most basic of necessities: getting him to eat, getting him to sleep, getting him to stop crying. Like wild animals—like wolves frantic over a wounded body in the pack, faced with blood, raw bone—we circled and paced around our helpless child. We kept a vigilant watch for clues, for answers that never came.

In the meantime, in our hour of need, Rebecca’s job—our main source of income while I was in grad school, and which allowed her to work from home and be with the baby full-time—was slashed by two-thirds. Friends fell away. Certain academic mentors shunned, admonished, or ignored us. Only a chosen few understood our predicament: we were not sleeping; we had no money. Then after my graduation and a year spent working as a lecturer, my job, too, was cut. We were grief-stricken, exhausted, broke, burdened with student loans coming due, and fearful about the credit card debt we were racking up in order to pay for diapers and groceries. During the twenty-minute spurts of his nap times, I tapped out cover letters to schools in far off California and New England, and waded through the bureaucratic hell of unemployment. My caseworker, a former teacher himself, told me that in this economy I would be better off if the letters behind my name were GED instead of PhD.

Rebecca and I talked about how many months we had before we would have to ask my parents if they could put us up in their basement. They lived five hundred miles away in Indiana, and the job prospects there were worse than in Nebraska. Rebecca’s father was out of the picture, and her mother passed away twenty years before, taken too young by breast cancer. We cashed in the small investments we had worked hard to accumulate and lived in fear of what new bills might arrive in the mail.

This was not how our lives were supposed to turn out. I should have had a job to support us, to at least get us the essentials. Rebecca should have had the chance to be the mother that she herself had only known for so long, the chance to be healed by love and loving. Our son should have known so many things: calm and comfort, the warmth of our arms, the wonder of a budding consciousness.

When we first decided to have him I had been scared of everything that could go wrong: with his health, with Rebecca’s health, with money and jobs. I did not know what kind of father I would be, and I worried I would lose my writing, my sense of self. I was anxious, too, over the fact that part of bringing a child into the world meant offering that child—and also myself, Rebecca—to the infinite variety of suffering life devises for us all. On our walks around the neighborhood with our dog, as we held hands and talked and made plans, I had a hard time imagining how I would feel as a father, and what would be different. In the mornings, as we laid in bed together—as I held Rebecca and cradled an arm around her growing belly—I wondered if I had made a huge mistake, if I would be found out as a fraud. At the same time, I knew how much Rebecca wanted this. Every night I watched her as she sat with her laptop, reading books on natural childbirth, buying baby clothes and slippers and BPA-free baby bottles, combing websites for tips, and making lists of all the other things we would need. Each time UPS brought a box to the door, she opened it and pulled out a prize to show me: alphabet flashcards to hang on his wall, a wrap for carrying him around, Sophie the teething giraffe.

If anything gave me the courage to face my fears about fatherhood it was the joy Rebecca felt preparing for his arrival. It was contagious. I began to imagine him, his soft weight on my shoulder some Saturday in the fall as I watched a college football game, the sighing up and down of his breath.

But that scene never played out. In the first eighteen months of his life, he fell asleep in our arms exactly three times (and then only out of exhaustion). I became angry, sullen, withdrawn. Jittery and lacking a good reaction time due to the sleep deprivation, Rebecca didn’t feel safe on the road and stopped driving. Our walks with the dog got fewer and farther between. The toys and trinkets we bought before our son was born stayed in their boxes or were played with once and set aside. The night’s adrenaline-spiked confusion left us hung over and wanting only to be alone between work and caretaking shifts, and in the mornings we did not hold each other. Instead we gradually became a family of shut-ins who only left the house when absolutely necessary, for work, groceries, the doctor. Any leftover energy went right back into our son’s care.

***

Two months before his second birthday, I landed a phone interview with a school in New England and needed the house to myself for a few hours. Rebecca took him to the zoo. There was a train at the zoo, and she wanted to treat him to his first ride. But before they got to the train, he went ashen and started crying. She took him to the bathroom to change his diaper, and once she got his pants down he panicked, started screaming. Afraid of what the other women in the bathroom would think, she hurriedly pulled his clothes on and brought him out into the light of day. She took him to a park bench, held him, rocked him, offered him a sip of water, some animal crackers. He was confused and shrieking, and several times he tried to run away from her but she held him tight, spoke to him in as soothing a voice as she could manage. Finally, when he still did not calm down, she walked him to the car, buckled him into his car seat, and drove around town, in tears herself, until she was sure my interview was over.

“I can’t take my son to the zoo? To ride the goddamned train?” Back home she came in the door, angrier and more frantic than I had ever seen her. “I’m calling Tricia.” Tricia was our new pediatrician, a woman I had known from one of my writing classes at school. She was writing a novel set on a ranch in western Nebraska.

“What’s she supposed to do?” I said.

“She can get us a bed at Children’s Hospital in Omaha. I’m calling her. I don’t care if it’s the ER. We’re going.”

“Hon—”

“We’re going.”

She stormed off to the bedroom to call Tricia, and I looked at our son where he sat on the floor. His eyes were puffy and red. He seemed a little dazed, out of it. Rebecca had convinced herself he had celiac or an intestinal blockage, something with the gut, and she wanted an endoscopy performed. I edged away from that. The thought of surgery scared me: a masked doctor leaning over our precious child.

I picked him up, stood in the doorway.

“Yes. Okay,” Rebecca said.

She shouldered past me to the kitchen and wrote something on a piece of paper. I shifted him uneasily from one arm to the other. He was heavy, awkward. Finally she hung up the phone and turned to me.

“We’ve got a bed.”

“For when?”

“Tonight.” She went back to the bedroom, began packing an overnight bag for the three of us. “They may scope him.”

I said I didn’t understand. If he needed an endoscopy why hadn’t Tricia ordered one before? What had changed? He had a meltdown at the zoo? He had meltdowns every day. And what the hell were the doctors supposed to tell us that they had not already told us? No matter the symptoms we described or the photos and videos we brought in, he was meeting his physical and developmental milestones. And what if the scope proved as inconclusive as everything else had? What then?

“I don’t care,” Rebecca said.

There was a fierceness in her voice—she had made up her mind and nothing was going to change it. So I said nothing more. It was lunchtime anyway. I put him in his high chair, set about making his milk, dumping applesauce in a bowl. Rebecca put our bags by the door. The house was quiet.

All afternoon I worried about what would happen at the hospital. And if they didn’t find anything wrong with him, what would they think of us for having brought him in? Out of my confusion the only reasonable thing seemed to talk to Tricia myself, to make sure we were in the right. So before we left for the hospital, I put in the call. I asked point blank if she thought an endoscopy was necessary. No, she said, frankly, she did not. “Then why even get us a bed for the night?” I asked.

“For Mom’s peace of mind.”

“What?”

“Well, if we can make Mom feel better,” she said, “that’s probably what we should do. We should make Mom feel better.”

I thanked her and hung up the phone, feeling sick to my stomach. She thought it was Rebecca—thought it was us. Part of me thought it was us, too. We were first-time parents without family nearby. We were under a tremendous amount of strain because of money. And even though we both feared something was wrong, he did have his good days. But I still could not get clear of the fact that if it were all in our heads, why could he not sleep for more than a few hours at a time? Why was he so fussy? Why did he shriek? Why was his belly distended? Why the alternating bouts of constipation and diarrhea? And why, no matter how we worked at his care, could we not comfort him?

When it was time for us to go to the hospital, we prepared—as we had learned to— down to the smallest detail. We packed the car with snacks, sippy cups, diapers, multiple changes of clothes, pillows, blankets, baby books, books to read, magazines, the iPod, Rebecca’s laptop. On our way out of town, we picked up sandwiches and drove north to the interstate under an indelible powder-blue sky. Instead of our normal route, I took an ill-advised shortcut that ended in a barricade of flickering ROAD CLOSED signs. Rebecca stared out the window, silent, as I turned us around. We snaked through side-streets and made our way to the outskirts of town, where houses and gas stations gave way to hot green cornfields rippling in the breeze. Up ahead, a grain elevator towered over a set of railroad tracks. No sooner had I spotted the crossing than bells sounded, red lights flashed. Here came the train—a freighter loaded with coal from Wyoming. It was huge and moving at a steady clip, and the roar as it approached and pounded down the tracks ate up every other sound. I pulled over to the side of the road, cut the engine. The rattling and clunking of its cars, the grinding screech of steel on steel: I felt it pulsing through me, from the hollow of my chest to the tips of my fingers. I thought maybe getting stopped like this, a second time, was a sign. Maybe we shouldn’t go. In the passenger’s seat, Rebecca looked pale and overtired, as though that morning’s flood of anger and determination had receded into the deep channel of weariness from which it had spilled. I asked her what she wanted to do. She shrugged, said she didn’t know. In back, in his car seat, our son turned a Dr. Seuss book over and over in his little hands. I loved him so much. He was sick, and I did not want him to be sick.

I started the car and drove us home.

Steve Edwards is author of the memoir BREAKING INTO THE BACKCOUNTRY, the story of his seven months as caretaker of a backcountry homestead along the Rogue River in Oregon. His writing can be found in Orion Magazine, The Rumpus, Electric Literature and elsewhere. He lives in Massachusetts.

What’s Jen Pastiloff’s workshop all about anyway? It’s about being human. Connecting. Finding your voice. Not being an asshole. Singing out loud. Sharing your fears. Bearing witness. Telling your fears to fuck off & fly. Listening. Moving your body. Laughing. Crying. Finding comfort. Offering comfort. Letting go. Creating.
Next one after this is NYC Feb 4 at Pure Yoga West. You don’t need to be a yogi at all. Just be a human. Click photo to book.

 

Join The Manifestation Retreat: Manifesting Under The Tuscan Sun. June 17-24 OR Sep 9-16. Email retreats@jenniferpastiloff.com or click the picture above.

Fear, Guest Posts, Illness

The Rainbow Laundry Project

November 6, 2016

By Alison Moncrieff

It was a week I thought I’d have alone in our house, but camp plans fell through for my boy and my girl was home with a  cold. It was mid-August, hot and dry, and my children, decidedly not at camp or elsewhere, bounced off the walls like a couple of Superballs, like Boing Putty or Bouncy Clay. After bouncing, they dug holes in the back yard, filling them with water they diverted through aqueducts they made from PVC pipe. They experimented wildly with staples and spices, inventing power-food recipes for rainbow2imaginary creatures with the ability to fly and heal. They had healing, escaping death even, on their minds. They painted in acrylics on the walls of their bedrooms. (Yes, I said it was okay!)

We were nearing the end of the week. I was anxious, short-fused. Come September, I’d be having brain surgery to remove a benign but growing tumor from my right frontal lobe, and I was preoccupied with that. More like terrified. I was only just getting my bearings since my mom died the year before, and the thought of brain surgery was daunting even before I remembered I’d have to go through it without her. And what if I died? This was the level of my fear. I tried to counter it with positive facts about the good odds of my survival and how brain surgeons really know what they are doing, etc.  Those things didn’t exactly calm me down. When I told my kids about the surgery, my daughter (5) asked first about the details of the operation (“How do they get in there to take it out?”), then she asked if I was going to die. My son (8) sat close in with wide eyes. I stayed upbeat. I trotted out the positive facts about the good odds and capable surgeons, and I told them about Egyptians doing brain surgery thousands of years ago. I considered that I was lucky to be able to give them the answer I did. Continue Reading…

Fear, Guest Posts, Illness

Embracing Imperfection

November 4, 2016
hug

By Meg Pier

“If you have special circumstances, please tell us,” announced a sign at the registration table.

I felt a combination of relief and skepticism, an internal tug of war between hope I’d get what I came for–and certainty I wouldn’t.

“I’m sure everyone thinks their circumstances are special,” I babbled to the attendants. “But my mother is dying and things aren’t finished between us. I got here late but it wasn’t my fault. I really, really need a hug.

And I wanted it from no less than someone considered by millions to be a divine mother.

Hindu spiritual leader Mata Amritanandamayi is also known to her followers as “Amma,” or “Mother” in the Indian dialect of her native Kerala. Amma’s ministry is hugging people, which she considers a manifestation of her darshana, or divine vision. Through a series of world tours over the past three decades, the rotund guru has embraced more than 36 million people—roughly the same number of people who have seen the Rolling Stones in that time period.

When I had happened to hear that the mystic would be practically in my back yard in a few days, I thought, “What the hell.” As a lapsed Catholic who was struggling to believe in anything, I needed whatever help I could get.

My mother had been diagnosed with a recurrence of cancer that had claimed half of one of her lungs five years earlier. I loved my mother deeply but her frequent brushes with death had left me so exhausted, addled and angry that at times I felt about to spontaneously combust. Continue Reading…

Guest Posts, Illness

How My Invisible Illness Made Me Capable of Anything

July 18, 2016
illness

By Amy Oestreicher

I’ve always thought myself capable of overcoming anything.  Overcoming illness meant waiting for a fever to go down. Illness was a stuffy nose – a sick-day, an excuse to miss a day of school. At 18 years old, “illness” took on an entirely different meaning. Illness meant waking up from a coma, learning that my stomach exploded, I had no digestive system, and I was to be stabilized with IV nutrition until surgeons could figure out how to put me back together again. Illness meant a life forever out of my control and a body I didn’t recognize.

What happened to me physically had no formal diagnosis. I had ostomy bags and gastrointestinal issues, but I didn’t have Crohn’s disease. Doctors were fighting to keep me alive, but I had no terminal illness. There was so much damage done to my esophagus that it had to be surgically diverted, but I was never bulimic. I didn’t fit into any category. Suddenly, I was just “ill”.

I became a surgical guinea pig, subject to medical procedures, tests and interventions, as devoted medical staff put hours into reconstructing and re-reconstructing me, determined to give me a digestive system and a functional life. Continue Reading…

Compassion, Guest Posts, 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…

Chronic Illness, Guest Posts, 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

beauty-hunting-jen-logo-black1-300x88

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.

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death, Grief, Guest Posts

My Mother’s Appetite.

November 30, 2014

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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…

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