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autism

Chronic Illness, chronic pain, Guest Posts

Hysteria & Me: An Ancient, Misogynistic Disorder is Killing Women

September 27, 2020
SYMPTOM

By Elizabeth Land Quant

On a December morning in 2017, I woke up face down next to my treadmill. The week before, a rheumatologist at Cleveland Clinic had diagnosed me with fibromyalgia, which she described as an “exercise depravation syndrome,” and told me that aerobic exercise would help my symptoms. “As long as your heart races a little and you sweat,” the doctor’s handout advised.

Now, as I lay on the floor, my heart raced like a trapped bird banging against my chest. I couldn’t take a deep breath. My pants were wet, from urine and sweat, and the nerves in my hands and feet were burning. I needed to throw up. Between the gray-tinged double vision and shaking in my legs, I couldn’t stand up, so I crawled across the floor and slowly pulled myself up the stairs.

After cleaning up my vomit, I vowed to follow my doctor’s advice and try even harder. Her handout said: “First, it is very important to know that even if the pain is worse after exercise, no injury to the body occurs.” But the next day when I tried to exercise things got worse. As the days wore on, I was unable to chew food. My neck muscles would not support my head, and I had to drink my dinner though a straw with my husband’s help. My chest hurt with every breath. I was incontinent, and my intestines became immobile. The burning in my hands and feet got so severe I couldn’t wear socks or gloves. My anxiety and depression were no longer controlled by my meds. I developed double vision and my left eye sagged. I couldn’t take care of my family anymore, or myself.

My husband worked a fulltime job, and we had three teenagers with medical and school needs. With my mother’s and sister’s help, we cobbled together a way to keep everyone fed, up on schoolwork, and attending most doctor’s appointments. Our daughter ran errands for the family after she got off work. My father-in-law picked up our boys from school as much as he could, with Uber as our back up. Dinner was made by anyone who had time that night, or we ordered. I missed countless school events like my son’s football games and my daughter’s high school homecoming coronation, memories we should have made together. I was so thankful that we could get by, but I constantly felt like a burden and a failure.

To get help, I traveled from my home in Minnesota to the Cleveland Clinic with the hope of finding answers for these symptoms. I chose this clinic because its website advertised  a clinic that works “collaboratively with multiple consultants and departments.” But instead of finding answers, after I told her that some of these symptoms had started in childhood, my rheumatologist focused her questions on whether I was traumatized as a child. I didn’t know it at the time, but the rheumatologist that I was seeing is a renowned expert in fibromyalgia, and was head of the Fibromyalgia Clinic at Cleveland Clinic.

“You’ve got severe fibromyalgia. I’m recommending intense psychiatric rehabilitation,” she said.

I found out years later that this rheumatologist conducted a study on how past abuse can indicate the severity of fibromyalgia. Her conclusion was to “recommend that abuse should be inquired about in all patients evaluated for FMS as this may give more clarity to the nature and severity of the FMS presentation and prompt the need for psychological interventions.” This doctor also recommended that severe fibromyalgia patients should not be evaluated for other diseases.

Soon after, back in Minnesota, I was erroneously diagnosed with somatic symptom and related disorders (SSRD), a psychiatric condition that is “characterized by an intense focus on physical (somatic) symptoms that causes significant distress and/or interferes with daily functioning.” They claimed my symptoms were caused by a mental illness and not a physical disease.

For decades, my anxiety, depression and physical symptoms had been attributed by doctors to my own actions. For instance, I was told by a gastroenterologist that my inability to swallow food and my intestinal motility issues were most likely brought on by limiting certain foods from my diet, like gluten and dairy (but if I ate those foods, I got hives and threw up). Other doctors said that my symptoms were present because I “worked and exercised too much and didn’t rest,” or that I was “resting too much” and became deconditioned. I was scolded for being underweight. I was scolded for being overweight. I focused too much attention on my kids and not enough on myself, causing unneeded anxiety. Another doctor said that I focused too much on myself by meditating and googling which vitamins to take, causing an unhealthy obsession with my health. I was told that I just “didn’t like getting older” and was depressed about it. So, all my physical problems – double vision, throwing up, falling down, urinating all over myself – were my fault, and all my therapy sessions, meditation, medicine, exercise, and healthy diet weren’t helping nearly enough, and somehow were making me worse. I had wondered if my kids and husband would be better off without me.

***

I started researching my new diagnoses, and found out that the diagnostic criteria for fibromyalgia and SSRD placed a red flag on patients, primarily women, who have multiple symptoms. Because I fit the criteria for these two diagnoses, I was no longer a candidate for further testing or referral to other specialists. An article in the American Academy of Family Physicians’ magazine states that SSRD “should be considered early in the evaluation of patients with unexplained symptoms to prevent unnecessary interventions and testing.” With approximately 12 million US adults misdiagnosed every year, and women and minorities 20 to 30 percent more likely to be misdiagnosed, how many women are having their “unexplained symptoms” dismissed as part of a somatic illness?

How did we get to this point in the twenty-first century where women are still repeatedly dismissed and misdiagnosed? Women are less likely to be administered pain medicine than men in emergency room settings. Women have a 50% higher chance than men of getting an incorrect diagnosis after a heart attack, and they are 30 % more likely to have a stroke misdiagnosed. Black women and other women of color face even larger disparities in the health care system compared to white women because of racial bias and discrimination. Stigma and discrimination against Transgender people limit their access to healthcare, negatively affecting their mental and physical health. A study “Women With Pain” found that “women with chronic pain conditions are more likely to be wrongly diagnosed with mental health conditions than men and prescribed psychotropic drugs, as doctors dismissed their symptoms as hysterics.”

This brought me right back to college, where a professor asked the question “what is the Greek word for uterus?” When no one answered, he paused for a dramatic beat, and then said, “Hystera. Where we get the word hysteria.” As the women in the class shifted lower into their seats, the men laughed, loudly. There even was a celebratory high five. I will never forget the absolute mortification I felt, and how instinctively I hurried to cover my scars under my shirt from multiple endometriosis and ovarian cyst surgeries. I felt betrayed by my own body.

***

In ancient Egypt, Greece, and Rome, hysteria was considered a women’s condition whose physical symptoms were thought to be attributed to a wandering uterus. Over time, the blame of these various hysteria symptoms shifted from a physical cause to a mental one. In the late 1800’s, the psychoanalyst Sigmund Freud posited that a woman’s psychological stress “converted” into physical symptoms that caused a hysterical state. Also during the Victorian Era, new diagnostic terms like “Briquet’s Syndrome,” named after French physician Paul Briquet, were given to women experiencing hysteria symptoms such as nausea, dizziness, fast heartbeat, pain all over, blurry vision, and weakness. Briquet’s Syndrome was renamed somatization disorder, which eventually became somatic symptom and related disorders. Hysteria was officially removed from the Diagnostic and Statistical Manual of Mental Disorders in 1980, but the stigma of a woman’s illness with a name meaning “melodramatic or attention seeking behavior” still remains.

***

At numerous doctor’s appointments, I was given the Patient Health Questionnaire – 15 (PHQ-15), a tool frequently used to diagnose fibromyalgia, SSRD and multiple mental illnesses, which has symptoms that are also associated with diseases that primarily affect women. The tool listed 15 symptoms and a rating scale of how severely these symptoms affected your life. Each time I checked off most if not all of the symptoms listed, including chest pain, fatigue, heart pounding, nausea, pain, shortness of breath, and stomach pain (refer to chart for complete list). In filling out the PHQ-15, I thought I was helping the doctor get closer to a diagnosis and treatment. Instead, I was checking off a list of “somatic symptoms” that pointed them away from a physical illness and toward a psychiatric disorder like SSRD. Small fiber neuropathy, autoimmune disease, ovarian cancer, autonomic dysfunction, heart disease, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Ehlers-Danlos syndromes, and now long-term Covid 19, conditions that affect millions of women, all have symptoms listed on the PHQ-15, and on screening questions for fibromyalgia. Another devastating problem with this set up is that more and more women are afraid of speaking up about their mental health symptoms, like I was, for fear of their physical symptoms being overlooked, or labelled as psychosomatic.

Women with mental illness, and I include myself in this group, are at risk of their mental health diagnoses being used as a red flag, halting the diagnostic process of their physical symptoms being looked into as part of a physical disease. More than 1 in 5 women in the US have experienced a mental health condition in the past year.  In our modern understanding of mental health, we believe that physical symptoms often manifest as a result of a mental health disorder. The problem is not that doctors identify mental health disorders as one potential cause of physical symptoms. The problem is that those same physical symptoms could also be caused by a number of physical diseases. This is the point where the effective process of a proper diagnosis breaks down. Instead of testing and ruling out physical disease, many doctors jump to the assumption of the absence of physical disease. Having a mental illness does not make us immune to having a physical disease.

Seventy-five percent of Americans with autoimmune disease are women, according to the American Autoimmune Related Disease Association and it takes on average three years and four doctors to get a diagnosis of an autoimmune disease. The study “Frequency of Symptoms of Ovarian Cancer in Women Presenting to Primary Care Clinics” shows that even though 89% of women with early stages of ovarian cancer have a distinct set of symptoms (bloating, abdominal pain, urinary symptoms, fatigue, back pain, constipation) that they report to a doctor, “only 20% percent of cases are caught in an early stage.” How many of these women were dismissed by their doctors because their symptoms fit a somatic illness or were written off as general reproductive issues that halted further testing?

***

About a month after the Cleveland Clinic appointment, my family and I went on vacation in Florida. I almost didn’t go, but this was the only time we could coordinate a trip with all five of us. I spent most of my time in the bathroom, throwing up sips of water I kept trying to swallow. I took anti-nausea meds, Tylenol, Ativan and Imodium to sit with my family by the pool, until I would have to lie down on the bathroom tiles again.

By the time we flew home, I was severely dehydrated and doubled over in pain, but refused to go to the ER for fear I would be accused of faking my symptoms for attention or told that this was my fault and I needed to exercise more. My husband begged me to go in, and it was there that a doctor first mentioned “autonomic disorders,” and autoimmune nerve diseases that could be causing my various symptoms. When I got home from the hospital after getting IV fluids, I looked up my medical records from Cleveland Clinic. The doctor who diagnosed me with fibromyalgia wrote in my appointment notes, “has not been diagnosed with small fiber neuropathy,” a disease that could explain most of my symptoms. It would have been so easy for this rheumatologist to refer me to one of the few nerve labs in the country for a biopsy, right in her same clinic.

***

The diagnosis of fibromyalgia has helped many women get symptom relief and disability services, but has also prevented countless women from receiving a correct diagnosis. Studies show that half of fibromyalgia patients are thought to have small fiber neuropathy, a disease that Johns Hopkins describes as damage to the peripheral nervous system, the nerves that send information from the brain and spinal cord to the rest of the body. This damage can cause symptoms ranging from pain, to gastrointestinal issues, to difficulty breathing and an irregular heartbeat.

Fibromyalgia shares many of the same symptoms of small fiber neuropathy (SFN), but the main difference is that SFN can be definitively tested for and treated, whereas the underlying causes of fibromyalgia are unknown and treatments only address symptoms. A quick and painless skin biopsy can confirm the SFN diagnosis, and if positive, further diagnostics can find a medical cause of the neuropathy in the majority of patients. Prompt treatment can prevent further damage to the nerves, and in some cases, the medical cause of small fiber neuropathy can even be cured.

After researching my symptoms, I convinced an open-minded neurologist in Minneapolis to conduct testing including a skin biopsy and a tilt table test. The biopsy revealed severe small fiber neuropathy, and further testing found Post Orthostatic Tachycardia Syndrome (an autonomic disorder that affects heart rate, blood pressure, and causes many other symptoms). I was also diagnosed with Myasthenia Gravis, a progressive, potentially life-threatening neuromuscular disease which can be fatal with too much exertion (so much for “even if the pain is worse after exercise, no injury to the body occurs”). A year later I was diagnosed with a hypothyroid disorder and asthma, both of which I was told I have had for years. I could not have fought for and received the right tests if I didn’t have a good health care plan, time to research, and money to pay for thousands of dollars of out of pocket costs.

I had missed out on so many of my kids’ events, as well as countless birthdays, anniversaries and holidays. If I had been given a tilt table test or a nerve biopsy instead of being continually misdiagnosed, maybe I could have started the right medications and been more present in my children’s lives while they were still growing up.

***

Being disabled itself doesn’t upset or scare me. I learned that I can live a full and happy disabled life by watching my father work and travel the world with his portable oxygen tank in his backpack. I’m angry about all the time I wasted blaming myself for a disease that was not my fault and all the years fighting for tests and medicine that could have slowed down or stopped the progression of these diseases. However, I am privileged to have the resources I need to live a comfortable life that allows me time to take care of myself.  It is unacceptable that in this country only well-to-do people with disabilities are able to live comfortably, while so many people are forced to fight to obtain correct diagnoses, assistance, adequate health care and safe housing.

When doctors are taught to hold back diagnostic testing based on the number of symptoms a patient has, and considering that so many illnesses that affect women have multiple symptoms, including potentially deadly ones like ovarian cancer, it’s not hard to understand why so many women have been misdiagnosed.

Elizabeth Land Quant is an autistic, queer, disabled writer, wife, and mom to three grown kids, two cats and a very spoiled dog. She studied Latin, Greek and political science at St. Olaf College, and splits her time between Minneapolis and Hot Springs, Arkansas. She researches and writes about her experiences with disability, autism, family, and her undying love for TV. Elizabeth writes poetry, fiction and nonfiction and is currently writing her first novel.  She has been published in Disability Acts.

Anti-racist resources, because silence is not an option.

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Autism, Guest Posts

Don’t Panic, I’m Only Autistic; or Welcome to Autism Acceptance Month

April 16, 2019
autism

By Susanna Donato

Just over a year ago, on March 23, I was diagnosed with autism. By now, I’ve shared that information with many people in my life, including family, friends, and colleagues. Some of them, when I’ve explained, have said something along the lines of, “Oh! Yeah, you’re a little different, but I thought that was just a Susanna thing!”

Still, even though I don’t think “coming out” as autistic—sharing what’s essentially a medical diagnosis—is an obligation, I’m starting to feel a little lily-livered about posting resources and information and commenting on other people’s posts without sharing the reason I’m doing so or my perspective.

I’ve been reluctant to “go public” mainly because I don’t want people to judge me. When I told one friend, he took a step back and asked if I was OK.

I’m OK. I’m definitely OK. Autism isn’t contagious. It isn’t a deteriorating condition. And there are so many people like me. While the stereotype of autism may still be a boy with verbal and/or intellectual challenges—and don’t get me wrong, those individuals absolutely are present and deserve the same rights as anyone!—half or more have IQs that are average to above average, sometimes way above average. (Though non-speaking doesn’t mean non-communicative.) Lots of us are women, and a bunch are nonbinary or identify in other ways. And all of us, God willing, grow up and become adults. Continue Reading…

Guest Posts, No Bullshit Motherhood, parenting

Attachment Parenting

November 10, 2016

*An amazing picture Jesse drew of his family, putting them in two pairs.

By Kendra Lubalin

Sadie is wrapped around my leg, her surprisingly strong thighs and arms tightly squeezing her body to mine, attached.  She says “I don’t know why I ever stopped nursing!  If I hadn’t I could still suck on your boobs every day!”  She is six years old, but her face is pressed to my calf so tightly, her yearning voice so authentically in pain, that I can’t laugh.

She wants to be so close that she doesn’t know how to get there.  It’s an impossible amount of closeness to achieve.  She wants my membranes to be permeable so she can swim inside me, she wants to pass though me like a ghost, but solid and warm – blood mixing with blood, breath with breath, heartbeat with heartbeat.  If she could crawl back inside the womb I’m still not sure she could satiate the desire she has to own me, to make me hers.  She whispers to me that she will put a window into my stomach, so she can live in there and still see her friends.

Straddling my lap she grabs my face in her hands and goes eye to eye, foreheads touching.

“You are mine.  Only mine.” Continue Reading…

Autism, Guest Posts, Special Needs

The Seventeenth Ring

October 6, 2016
autism

By Jayne Schroeder

His small hands, the only notice of what was to come; tiny fists clenched tight and shaking from the sudden storm of rage brewing inside. The yelling, incoherent screams of anger. His hands, now unclenched, his index finger waving wildly, signifying blame to an unknown source an arm’s length away. I wonder just how bad it will get this time. How long will it last and how will it end? I complete a quick scan of the room looking for possible items in his path I fear cannot be replaced. I catch sight of his iPad and my laptop, and I send a silent plea to the Universe. I make a mental note of the blue cup of water on the coffee table, but that’s the last thing I’m thinking about. It’s just water.

My third child was born with an extra twenty-first chromosome on Earth Day, seventeen years ago. It’s not lost on me that his love for every animal and human on this planet is given equally and unconditionally. There is an innocence so breathtakingly beautiful with the living out loud approach he takes in life. He is not self-conscious; the polar opposite of most typically developing teenagers, what you see is what you get. Contrary to the most popular of pre-conceived notions regarding Down syndrome, he is not happy all the time. He is human. Just like you, his emotions run the full spectrum. He does not think twice about letting you know what he is feeling in any particular moment. It can be both beautiful and painful to watch. Continue Reading…

death, Guest Posts

Letting Go

April 22, 2016
pet

By Liane Kupferberg Carter

I get the news moments before my 21 year old autistic son Mickey gets home. The biopsy is back: our fourteen year old cat Fudge has lymphoma.

I still manage to greet Mickey cheerfully when he walks through the door. But he knows me too well. “Do you have sad news for me? Is Fudge dead?”

So much for the myth that people with autism have no empathy.

We try a course of chemo. She responds better than we expect. But late one Sunday night, Fudge suddenly pees on the carpet. She has never done this. She staggers, and looks spacey. Something is very, very wrong. When I pick her up, she is limp.

“Is Fudge dying?” Mickey asks. Continue Reading…

courage, Family, Fear, Guest Posts, motherhood

(Dis)connections

November 29, 2015

By Lisa Porter

Daisy loves to wear wings and fluffy dresses. When she encounters someone that she deems to be filled with interesting energy, she hugs without asking, or requests a hug and invites engagement in a world full of disengagement. She admires beautiful hair, mermaid tails, cute babies, and dresses that are ‘just like a wedding.’ Her conversations are most frequently with an old sewing machine, the ‘dipper’ (stars), and the crows in the fig tree. She doesn’t abide boundaries based on social norms. Daisy is 11. She is one of the most awake beings that I know. Living with her has forced me to be curious about the brain and the concept of plasticity. Because of Daisy, I believe in everyone’s capacity to change, adapt habits, and learn to communicate without words. She has converted me into a missionary, preaching the overlooked wisdom of the sensory system, as I observe her struggle to manage all of the typical sensory input that I unconsciously process.

The disabilities emerged slowly. She missed milestones, started wearing glasses at four months, had eye surgery at seven months, didn’t crawl, and didn’t walk until she was almost two. I remember the day when it really sunk in…the day that she started at a school for two year olds with special needs. We had moved from New York City to San Diego for my academic job when she was a newborn. This change was supposed to open the ‘perfect’ chapter in my life, transitioning from the professional theater to the academic and making room for this baby. Instead, and on the day that she started at a ‘special’ school, sadness took me hostage. I remember thinking, anything other than her intellect. Today, she is officially labeled with an intellectual disability, also known as Autism Spectrum Disorder. In terms of how American society traditionally measures achievements, potential, and quality of life, she is ‘less than.’ All of the words that begin with ‘dis’ sting with the stigma of ‘less than.’ Disappointment, dismay, disparage, disarray, disgust, disrepair, disillusion, disregard, dismantle, disruption.

The completely normal pregnancy, birth, and first few weeks of her life, led me to believe I had a shot at a typical parenting experience. I remember asking at the moment Daisy was born, ‘does she have ten fingers and ten toes?’ And indeed, she does. I knew parenting would change me forever, just not like this, not like this. Nine years after that first day at the special school, my worst-case scenario is now my daily life.

My husband and I took a trip to Berlin when Daisy was about five. Until then, I had never fully understood that during the Holocaust, those with disabilities were killed first and without delay. The Nazis dismissed them as worthless and unsalvageable. I remember that realization as a moment of deep clarity about the intensity of the struggle ahead. This was a time to transform into a warrior who could advocate for my daughter, leading us into the battle. Continue Reading…

Binders, Guest Posts, parenting

Consumed

July 16, 2015

By Liane Kupferberg Carter

I am at a fish restaurant in the theater district the first time it happens. My sister in law Susan and I have tickets for the matinee performance of “Love, Loss and What I Wore.”  I have just ordered the filet of sole, when suddenly the room gets too bright, the clatter of glassware too loud. A swell of nausea washes over me. My heart pounds; my throat constricts. I can’t breathe. Is it the smell of seafood? A panic attack?

I flee to the ladies’ room. Eventually the sick feelings subside.

But several days later it happens again. Nausea.  Racing heart. Tightness. I go see the cardiologist.

“Everything checks out okay,” she says. “I don’t think it’s your heart. You should see the gastroenterologist.”

I dread the idea of someone threading a camera down my throat. But the nausea quickly becomes unrelenting. I feel systemically sick. After I wake nauseated one night, teeth chattering, I schedule the endoscopy. When I wake up from the anesthesia, the doctor tells me, “The good news is that you don’t have an ulcer. You have some reflux. We’ll have the biopsy back in a week. We’ll start you on a proton pump inhibitor, but if you don’t feel better, come back and we’ll explore further.”

The futuristic-sounding proton pump inhibitor, it turns out, is a fancy name for a Nexium- type medication.  I am hopeful. And for a few weeks I do feel better.  Then the nausea and constriction come back.  The doctor calls it non-specific gastritis. Is he suggesting this is all in my head?  Anxiety gnaws at me. I start to dread eating. I find myself cancelling social appointments, because they all revolve around meals. I am consumed with feeling ill. I think about the many meanings of that word consumed.  Swallowed.  Spent. Drained.  Depleted.   Devoured.  Destroyed.  I wake in the night with a suffocating sense of my own mortality, thinking, I can’t be sick.  Mothers of special needs children have to live forever.

I return to the doctor. He palpates my stomach and weighs me.  I have lost 12 pounds. “I think the medication isn’t helping as much because you have a hybrid form of gastric reflux and irritable bowel,” he says. “Are you under stress?”

I tell him that my younger son, Mickey, has autism and epilepsy.  He nods sympathetically. “Okay, let’s just get an abdominal ultrasound to rule some things out.” Continue Reading…

Guest Posts, motherhood, parenting, Special Needs

Down Is Up: On Parenting a Child With Special Needs.

November 6, 2014

beauty-hunting-jen-logo-blackBy Anna Yarrow.

My daughter stands in the middle of a shallow pond, yelling, “If you love me, come and get me! Do you want me? Do you care?” I rest in a patch of shade, watching hordes of children and chaperones traipsing over a wooden bridge; an epileptic girl who fainted at the old schoolhouse, her face weary, limbs floppy in the aftermath; hearing-impaired students in red t-shirts, marching single file, absorbing this living-history museum with their turbo eyes, fingers dancing shadow puppets between them.

“Fine then Mom! I guess I’ll have to stay here . . . Forever! . . . Way past midnight!”

The tremor in her voice tells me there’s sand itching in her socks. Cicadas buzz in the cottonwood trees, volume cranked to unbearable. A canker sore stings her gums. Lunch uneaten. All factors tipping us towards melt-down. A teacher calls, “Time to go, kids!” I wave at the 2nd grade class as they jostle back to the bus. A boy asks, “Why does she get to stay in the water?”

I drove my daughter separately, in case she got wet and muddy, or needed to leave the field trip early. Water usually calms her, but today she’s rocking, hands in tight fists, moaning, “You have to come get me . . . “

I peel off my boots, roll up my jeans, and approach her, soothing, “It’s okay . . . I do want you . . . Please, let’s go.” She grabs my waist and holds tight, pretending she can’t walk. Words like ‘manipulation’ and ‘discipline’ flash across my mind (residue from my spare-the-rod-spoil-the-child upbringing). I’m triggered by her anxious questions: what is love what is want what is care?

She’s silent when I say, “I love you.” (But at least she doesn’t reply, “I don’t love you!” like years past.)

I escort her through heat and blowing dust, and “I’m tired!” towards the parking lot. She asks, “Can we can stop at the library on our way home?” I agree, and remind myself to breathe.

Reality feels slippery after a tantrum. Memories of previous episodes conglomerate in my ribcage, taunting: out-of-control! I judge the day’s events while driving. Pond, yelling, and desperation. Mother frazzled and inept. I give my daughter a carton of almond milk, and fumble the radio, finding her favorite country music station.

Yellow lines blur around a sharp bend. Oncoming vehicle red or orange spooks me and I swerve my Jeep off the road. Slow motion skid on dirt, hello sagebrush, windshield shattering. We’re crashing, tipping, rolling. My arm reaches out to protect her, and I promise, “WE ARE OKAY. WE ARE NOT HURT.”

And she believes me.

Hanging upside-down like bats. My legs pretzel the steering wheel. Engine sounds wrong, so I turn the key. Undo her seatbelt. She falls to the ceiling, surrounded by nuggets of turquoise glass. I say: “We had an accident, but we’re safe!“ She glows with surprise and says, “That felt like zero gravity!” I wonder why I don’t feel sorry. Why we’re not crying. Why all of this feels right somehow.

Continue Reading…

Guest Posts, parenting, Special Needs

Before You Judge Me.

October 8, 2014

beauty-hunting-jen-logo-black

By Rachel Pastiloff.

When you are out in the world, be it at a restaurant, grocery shopping, driving in traffic, or at the doctor’s office, and you see a child screaming and a mother losing her cool and grabbing that child by the arm and being stern: BE CAREFUL BEFORE YOU JUDGE THEM.

Be careful placing judgment upon others, for you know not what battles they are fighting.

Before you judge me, or anyone. Take a breath. Consider what you might not know. Look inward. Look outward. Whatever it is, realize this: you may never have any idea of someone else’s story, so judging them is a tricky business.

Continue Reading…

Delight, Guest Posts, I Have Done Love, Inspiration

What Happens When Justin Timberlake & 25,000 Fans Sing Happy Birthday To a Boy With Autism?

August 14, 2014

Hey there! Jen Pastiloff here, I’m the founder of The Manifest-Station. Marika, the author of this piece, won a spot at my Manifestation Retreat in Ojai last summer based on her writing! It is such an honor to publish her here again. I am excited to announce that Good Morning America just contacted me after they saw this story on my site! And People Magazine And MTV and The Today Show and my goodness, it keeps on coming…It was an honor when I was on Good Morning America and was able to raise awareness for Prader Willi Syndrome (which my nephew Blaise has, as well as autism.) I am thrilled to see what this will all do for autism awareness. Go Julian! Thanks to Justin Timberlake for being such a star! A class act! If you are using this article please make sure you credit/link The Manifest-Station.

Continue Reading…

courage, Grief, Guest Posts, healing, I Have Done Love

When You Believe You Are Unlovable.

February 9, 2014

beauty-hunting-jen-logo-black

By Rachel Pastiloff.

If I close my eyes and think hard enough I can almost remember the house. Almost. I can’t remember if it was brown or green. Maybe it was brown with yellow trim. I do remember the chain link fence in the back yard, and the rabbit hutch my Poppy made for us. I wish I could remember more. I just said to a friend this past weekend, “I wish I had a photographic memory,” but then realized that would probably be a curse.

I still dream of those days. The ones that happened before July of 1983. Maybe I could go under hypnosis and while in a trance bring a Polaroid camera with me. I had a Polaroid camera once. It was pink and I loved the instant gratification. I would take my Polaroid and snap a photo of all the moments from January 15th, 1978 until July 15th, 1983.

I have a snapshot of the day my daddy died. I have that moment etched in my brain. Chinese checkers, shag carpet, curse words and fist slamming, sirens, strange men, family arriving. I remember all of that. The den where I was held captive as they took Mel, my dad, away on a stretcher. I snuck away and caught a glimpse of his lifeless body. I had no idea it would be the last time I saw his beautiful face, although it did not look beautiful on that stretcher, blue and dying.

In the weeks before he passed my mom and dad had “the talk” with my sister and me. It was the “we are getting a divorce talk.” I remember the bedroom and the bed we sat on with its putrid ugly yellow sheets. My father had an armoire that held all of his “cool” stuff. Probably the same place he placed his drugs, the ones that would weeks later rip him out of my life. That talk would leave an imprint on my life.

I carried it around with me like a 200-pound appendage.

My last memories of my father were of him saying, “You can have Rachel and I will take Jennifer.”

A few weeks later he died. I carried the burden of his poison laced words with me, the words that a five year old hears, in five-year-old comprehension.

  • You don’t love me?
  • Why don’t you want me?
  • Why won’t you take me?
  • I am unlovable. 

For years I’d ask my mother why?

Why didn’t he think I was worth taking, loving, or keeping? She always made excuses for him. None of them ever took it away.

His words became my inner voice.

***

I am a mother now. I have the choice now. As I read the post on Facebook it knocked me over.

“How you speak to your children becomes their inner voice.”

I couldn’t breathe when I read it.

I have to make sure that their inner voice is one that says: I am loveable. I am wanted. I am smart and kind. I am heard. I am special.

This is a challenge as the mother of one child with a rare genetic disorder and autism, and another child with ADHD and a mood disorder. It’s a major battle sometimes to remember to breathe, and sometimes, just to conquer minute by minute of the day.

I have not been the most gracious mom over the last six months. I am depleted in every possible definition of the word. I have had more than my fair share of ugly mom moments, last night being one of them. I was yelling and pounding my fists, scaring even myself. Watching myself as if I were in a movie, looking at my little one stare at me as if I was a monster.

Those moments pass and we are fine, but what is the ripple that I have created inside his voice pool? Rachel, your words become their inner voice.

Your words are what they hear when they lay their heads on the pillow and fall into their dream state. I finally had that epiphinany.

“Epiphany,” the book written by Elise Ballard. I bought it and kept wondering when my epiphany would come. I want it to be profound and earth shattering. I want the world to feel a mini earthquake when my brain finally gets it.

That isn’t even close to what happened. Instead, I lay in my bed last night and told myself to just breathe in and just breathe out, over and over again. I remembered that Facebook post I read.

I want my voice to lift my children up. I want my voice to inspire my children everyday so much that they think to themselves, “I am so lucky, I have such a good life.” I want my voice to be the thing that lights a fire in my children, and keeps them going even when it hurts. I want my voice to be the one they hear in their dreams that tells them, you are so loved, you are so wanted, you are a special gift, and you are love.

My sister Jennifer often says: At the end of your life when you ask one final “what have I done?” Let your answer be “I have done love.”

At the end of my life when my children say their good bye to me they will say, She did love. She gave me my voice.

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Rachel is a native of Philadelphia/South Jersey. She currently resides in Atlanta with her husband and two young sons, ages 7 and 4. In 2009 Rachel’s oldest son was diagnosed with a rare genetic disorder called Prader-Willi Syndrome, with a diagnosis of autism to follow shortly after. The diagnosis was traumatic and forever altered the course of her life. Rachel has made it her mission to educate the world about children who have special needs and their parents. In her spare time between doctor’s appointments, therapy sessions, and the normal stuff everyday parents do, she writes a blog RachelPastiloff.com. Rachel is also a yoga teacher and a health coach in Atlanta. She received her training from the Institute for Integrative Nutrition. Her passion for food, nutrition and wellness are her biggest passion. You can find her on Facebook,  instagram at @rachelpastiloff or assisting her sister Jen at one of her retreats around the world.

 

The 12 Day Detox is here. Sign up now for the next cleanse on Jan 11, 2016. Space is limited. This detox comes at just the perfect time. Reprogram your body and mind as we move into the holiday season. This is your time of rejuvenation and renewal.This is not a juice fast, or a detox based on deprivation. Click photo to book.

The 12 Day Detox is here. Sign up now for the next cleanse on Jan 11, 2016. Space is limited. This detox comes at just the perfect time. Reprogram your body and mind as we move into the holiday season. This is your time of rejuvenation and renewal.This is not a juice fast, or a detox based on deprivation. Click photo to book.

tattoos by Conscious Ink. Click to order.

tattoos by Conscious Ink. Click photo to order.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above. No yoga experience required. Only requirement: Just be a human being.

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat by emailing barbara@jenniferpastiloff.com. No yoga experience required. Only requirement: Just be a human being. Sep 17-24, 2016.

Awe & Wonder, Birthday, There Are No Words To Describe This

Heartwarming Amazing Video On My Birthday!

December 12, 2013

Hello there! Today is my birthday and this is the best gift ever! You all helped raise the money to get my nephew Blaise, who has Prader Wili Syndrome and autism, his service dog. Here is Blaise with Simba. “My doggy, my baby!” Blaise says. It’s just too cute. Thank you all so much. Thanks to Dogwish for Simba. For more on Prader Willi click here. 

Please share and comment on this video on Youtube so people know how much is possible through social media, and, how important service dogs and animals are 😉

Guest Posts, parenting

The One Everyone Should Read: On Navigating Parenthood.

December 10, 2013

beauty-hunting-jen-logo-blackBy Rachel Pastiloff

I am constantly navigating through a crazy maze of trials in my life. Always trying to figure out if what is now is what it’s supposed to be. I constantly examine this concept with my children and myself.

Last Tuesday was an especially difficult day. I struggled through the day, and my kids weren’t even home from school yet. Once my littles arrived home, things went from hard to climbing Mt. Everest hard. Blaise, my sweet boy who has Prader Willi Syndrome and Autism, was in a state of destruction. As dinner approached, I asked my sweet angel where his glasses where. Very nonchalantly, he responded that they were broken. The two of us found our way into his bedroom where he showed me both pairs of his glasses broken, twisted and shattered in little pieces. I found myself cracking into those same little pieces.

I lost my patience and started yelling. I hate that part of me that comes out when I crack.

I screamed at him, “Why, Why, Why?”

He never answered. He didn’t understand what I was asking him. This led to the real issue. The glasses aren’t the issue; they are at the surface; they are like the skin; they are just the part you see. The real issue was exploding inside.

Why can’t my son understand me? Why can’t my son be “normal?” Why doesn’t my son’s brain work?

There it is: the guts of it all. It’s the insides coming out, the organs and the blood.

Seven years of dealing with special circumstances doesn’t make it easier. Seven years doesn’t make those bitter moments sting less. Seven years doesn’t close the wounds. I have spent the last few years stuffing down my feelings and pretending that all is cohesive. That it’s tough but working.

In reality, it was all still there under the surface, inside a pressure cooker about to explode.

I found myself crying after my kids went to sleep that night. I cried for myself. I cried for the stress that his syndrome can create in me, but mostly, I cried for him. I cried for what I thought was missing. I was quiet after I let it all out; I was quiet all through the days that followed. Something had opened up, and I finally had to face it and deal.

I had to accept what is.

Blaise accepts his life. It’s time I remember how to live more like him. Blaise doesn’t see failure or lack of in his life. He accepts things and does so with a smile.

I am working on accepting “the what is” now. I added into my a-ha moment that I can accept what is now and trust that things may look different in the future.

I have to let go of what I think it is “supposed” to look like in my life and in my kids’ lives.

As the parent of a special needs child, I tend to be on a roller coaster of emotions. Going through the struggles with my child. Walking the path of his life right by his side. It can be a daunting task. One thing I don’t need to add to my plate is judgment to what I think the picture of my child’s life should be.

I happily bought the little one a new pair of glasses. Hopefully this experience will have us both see a little clearer.

 

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Rachel Pastiloff is a native of Philadelphia/South Jersey. After years of living on the West Coast, she transplanted to Atlanta, Georgia from Berkeley, Ca in 2006. Rachel is a mother with 2 young boys, ages 5 and 7 years old.. In 2009 Rachel’s oldest was diagnosed with a rare genetic disorder called Prader Willi Syndrome. The following year her son was diagnosed again with Autism. Both of these events would help shift the direction of Rachel’s life. She began her path with health and wellness to create a better life for her family. It then became her passion. Rachel became a certified yoga teacher in 2012 and is a graduate of The Institute for Integrative Nutrition as a Health and Wellness Coach. A life long lover of food and cooking, Rachel helps her clients get back in the kitchen and enjoy it. She is helping people have a new relationship with not only food, but also their personal health and wellness. Her work can be seen here on the site and on Positively Positive. Reach her at rachyrachp@gmail.com to work with her or visit her site. 

Inspiration, Manifestation Retreats, Travels

Had We Loved In Time.

November 24, 2012

beauty-hunting-jen-logo-blackBy Jen Pastiloff

“In which at last I saw what a child must love, I saw what love might have done had we loved in time.”Mary Oliver ‘The Visitor’

Isn’t that what I am searching for? What we all are searching for? To love in time?  Isn’t that what we are all looking for? Under all the layers of hard rock and hurt and in between the rain and the spurts of sun across Southeast Asia or Southern California or Santa Fe? Just past the temples, past the shore, past the man washing his chicken in a dirty creek as he gets it ready for the fight. Isn’t this the great journey, this pilgrimage to love, to not running out of time, to dying with a heart empty of misgivings and misunderstandings rather than a heart full of I am sorries and I wish I did it better?

Here I am in Bali. My Manifestation Retreat in Ubud has ended. A sold-out retreat with all women (minus my husband who gave us the room to create the sisterhood we needed.) The retreat was very much a retreat toward love. One of the definitions of retreat according to the dictionary is: an act or process of withdrawing especially from what is difficult, dangerous, or disagreeable. And that is just what we did. We withdrew from the comparisons and the judgements and the traffic and the old beliefs and the children and the cooking and the phone calls and the heartache and the sameness of daily life. We withdrew towards our center.

Our mantra: May I always be this happy, May I always be this free. At least for this moment. And then this one. And this one. All of it in moments.

Moments experienced with a presence that could be likened to an offering. Here: Here I am, offering you my undivided attention and acceptance. This is my offering. There is nothing in my way. There is no past, no sickness, no going back to work, no dreading the plane ride back, no discomfort. There is just this. This perfect morsel in time. And I am here. Fully. This past week we retreated towards our center and as the sun rose in the morning and we looked out towards the temple and the men in the fields and the ducks waddling all along in a row like a cliche, our hearts knew what they have known all along: That this is what love feels like. This is what it is all for.

To know a beauty so precise that it aches in the place where pain has lived and also heartache, loss. This ache is more of a returning, a piece of ourselves we thought we may have lost along the way is slid back into itself without any kind of hassle or confusion. An offering. The term achingly beautiful finally and rightfully understood. And yes, it is felt in the same place. The heart doesn’t know any different, it just knows to feel. If we let it.

This past week was a letting. Take this offering and feel it. Tie yourself in knots and the undoing is a retreat, a coming home.

We all want to love in time. To think we could possibly run out of time is what causes traffic and wars and broken hearts. The actual running out of time is less common but it does happen. We can die without fully loving the things right in front of us and inside of us. We can let that happen. When I asked what everyone was manifesting many of the women said vulnerablity. It came up a lot during the week in journaling and class themes and throughout our visits to the temple. My heart should be this vulnerable, this open, so I may feel this beauty inside of me as I feel my own breath breaking the air above me as I snorkel with the most colorful fish I have ever seen and may I know this beauty in the way I have known other facts about myself, like I am this or I am that. This beauty is the knowable part of me just as any other. But to feel this beauty, to really see it as it is means I must be vulnerable to the pain as well.

Here is the sunrise with the knowing that the sun will indeed set, the sky will open at some point today and the rain will come down without explanation, the flowers will die, but that to miss it while it is right there in front of us means we are not accepting the offering. We are not accepting what has been inside of us all along, no matter how dormant or inactive. In Bali, they give offerings to the gods three times a day. It is their daily ritual to give back what the gods have given them. They do not take this lightly, it is a duty and an honor at the same time. Why should we not have the same system? I will take the love offered to me. I will take this gorgeous spicy food and the flowers left on beds and towels and the lily pads and the terraced rice fields and the silent Thank You from the toothless woman washing her clothes in the stream and the not so silent Thank You from the thunder. I will take the I love you as fact and the I believe in you as a Go signal. I will then offer back my heart since it is mine to give away. I will offer my support and my mistakes and what I have seen here and what I know to be possible and the smiles the Balinese wear which you might think to be myth and which I can assure you is not. I will offer back my words and my imagination and describe to you in the best detail I can just what I saw and how in the healing waters at Tirta Empul I prayed for my nephew and my dead father, and how my friend, just before she ducked her head under a spigot said And this one is for me and how I held her back as her shoulders shook under her sarong, under her sobbing. I will offer them all to you without holding back at all so you believe me when I tell you that there is time.

You will believe me when I tell you that if you let yourself be the beauty and never stop seeing the beauty, no matter if you are in Bali or traffic or a yoga class, that you will never run out of time. That although your father will still have died and you cannot take back what you said, that although you will still have had your heart broken or gotten hurt, the offering is this: You. You are the offering.

We are the offering.

We must place the beauty in our hearts right there next to loss and pain and whatever else is we have in there and we must pass it on. We must love like the Balinese do. Shamelessly and fully without any but this might not last. With acceptance and duty and honor and grace. When Agung, our beloved driver and host brought us to his home for dinner and so his twin 11 year old daughters could do a traditional Balinese dance for us, he spoke of his son. With a huge smile he said his son was artistic. So proud he was. We then realized he was saying “autistic.” His son came out and said hello to us, and Agung hugged him close and with a pride I am not sure I have ever seen as he introduced his whole family. They all live together in the compound with his father-in-law (it was his wife’s home first, a rare thing in Balinese culture.) A lot of the girls on the retreat cried, as I did, not because it was a sad thing, but because the love that came from them, that little clan standing there in front a of a bird cage, was more perfect than anything I’d seen. With its lack of judgement and story and shame it was a divine moment in time and we all felt blessed to witness it and we all made a mental note to love more like they loved. To be happy in the way they were even though a few of them shared a bed and the son was autistic and they had never left the island of Bali. And so what? What did they know besides love? No, they aren’t perfect. But they were loving in time.

May we all love in time.

With love from Uluwatu, Bali xo jen ps, I am doing Tuscany next rather than Bali.

If you visit Bali you must see Ugung’s daughters dancing!

thank you Simplereminders.com

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All of Jen Pastiloff’s events/retreats/workshops listed here.

Join Jen Pastiloff in Tuscany for her annual Manifestation Retreat. Click the sunflowers!

Join Jen Pastiloff in Tuscany for her annual Manifestation Retreat. Click the sunflowers!

Join Jen Pastiloff at a writing retreat in Mexico this May!  Jennifer Pastiloff is part of the faculty in 2015 at Other Voices Querétaro in Mexico with Gina Frangello, Emily Rapp, Stacy Berlein, and Rob Roberge. Please email Gina Frangello to be accepted at ovbooks@gmail.com. Click poster for info or to book. Space is very limited.

Join Jen Pastiloff at a writing retreat in Mexico this May!
Jennifer Pastiloff is part of the faculty in 2015 at Other Voices Querétaro in Mexico with Gina Frangello, Emily Rapp, Stacy Berlein, and Rob Roberge. Please email Gina Frangello to be accepted at ovbooks@gmail.com. Click poster for info or to book. Space is very limited.