Browsing Tag

Tay Sachs

Binders, Grief, Guest Posts, healing, Little Seal, loss

Cartography for Mourners.

March 2, 2015
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By Emily Rapp. 

The power of grief to derange the mind has in fact been exhaustively noted.

– Joan Didion, The Year of Magical Thinking

 

Maps to Anywhere (Numerous)

I hate maps. I can’t read them, understand them, interpret them, or follow them. I have a whole drawer full of maps and pop-up, fold out street guides for various cities, and although I take them with me when I visit these places, I never consult them. Instead I tote them around in my shoulder bag, my purse, my backpack, and ask people on the street for directions.

 

Map to a Funeral (Hidden)

It is mid-winter in downtown Chicago, and my parents, sitting in the two front seats of a rented mini-van, are huddled over a paper map. Exhaust billows in gray and black streaks past the windows. Commuters look shrouded and miserable, hurrying over frigid sidewalks in the rapidly fading light. I’m in the back seat with my ten-month-old daughter Charlotte, who is strapped in her car seat, babbling and cooing. She doesn’t know this is a terrible blizzard in rush hour, or that someone – my father’s mother, my grandmother – has died. We are driving from Chicago to Pontiac in a storm that feels as thick and relentless as the sound of the word blizzard on the radio, which is turned up high. People are frenzied, worried and watchful, the way people love to be about extreme weather conditions.

My grandmother has died at 93 after refusing food or fluids for two weeks, which is some kind of record. My son, at three years old, lasted only a few days with the same restrictions. Ninety years difference – a literal lifetime – between their ages at death. I struggle to understand what this means or how to absorb it, but generate no cogent thoughts.

Beyond the city limits the interstate is a blur of red and blue emergency lights, car blinkers switching on and off in irregular patterns that compete with the holiday hangers on who leave their Christmas decorations up after the new year. The drivers in the cars stopped on either side of us are reading newspapers spread out over the steering wheels or tapping into their phones, having given up changing lanes. One woman is slumped over, face in her hands, weeping.

My daughter poops her diaper, and I unstrap her from her safety restraints and change her in the unmoving car. My parents are bickering. My brother is waiting at the airport. We’d gone to Soldier’s Field to see the Aquarium, but ended up looking at twenty-year old exhibits of stuffed animals: antelope and bears in permanent yawn, taxidermy tails stalled mid-air. I crammed us all into a photo booth in our last fifteen minutes, because I had an enormous glass of wine for lunch and because we need to laugh.

“We should never have gone.”
“Who could have known we’d get stuck in a blizzard.”

This conversation continues on endless repeat, my parents trading lines between them until I threaten to throw the diaper into the front seat if they don’t change the subject. “Don’t think I won’t!” I shout, and feel like a teenager on vacation with her parents: petulant and trapped, self-righteous and unhappy.

We make it to O’Hare and pick up my brother and my nephew. My dad argues with the security guard, telling her that the airport is designed to be confusing. I tell him this is certainly not true. Through the open van door I toss Charlotte’s diaper into a curbside trashcan.

An hour from O’Hare, far from any lights, wind, snow-thick, swirls white and erratic over the roads mainly clear of cars but still treacherous. My dad drifts between lanes, floats across medians. “You’re fucking scaring me!” I shout when he crosses a road without looking in both directions. My brother glares at me for cursing in front of his ten-year-old son.

We stop at a town outside Chicago, at a sports bar, where six men wearing orange vests sitting at a table turn to stare at us when we walk through the door. We have been in the car for nearly ten hours. When I tell my friend Gina, a native of Chicago, where we ended up for dinner, she tells me she’s lived in Chicago her entire life and I’ve never even heard of that fucking place.

A waitress accidentally spills a beer on my father’s lap.

“This day is shitballs,” I tell him, and hand him a stack of napkins.

“Yep,” he agrees, but he’s laughing. He leaves the apologetic waitress a generous tip.

 

Map to a Church (Unnecessary)

The route to my grandmother’s funeral service is a straight line from the hotel to the church down a road lined with two-story houses, all fenced yards and large wooden porches, the sidewalks stacked on both sides with fresh snow that blows away in sporadic blasts of arctic wind to reveal weeks-old snow covered in soot, stamped with boot and paw prints and pieces of dog shit. The church is near the town lake, where a group of geese huddle together looking stunned and miserable on ice the same color as the wall of cold sky that seems almost low enough to touch the frozen water. I think they’re geese. I know they’re not ducks. I’m not a poet. I don’t know my birds. I don’t know an elm from a poplar. I’m a little bit better with flowers. I know a blue spruce because there was one in my yard in Santa Fe, and it was the one pop of color on the gray winter day two years ago when my son died.

“Don’t they migrate somewhere warmer?” I ask. “Those geese or birds or whatever?” Nobody answers me. At the church, my brother and his son leap out of the car and sprint across the parking lot. The frozen lake reminds me of another frozen lake in Minnesota where I spent one weekend listening to Joni Mitchell records and writing bad poetry (I didn’t know my birds then, either) with a group of college girlfriends; another frozen lake in Wisconsin where I watched five continuous hours of CNN on the first anniversary of 9/11. Both events seem whole lifetimes ago, memories connected to my current life by delicate filaments that show their strength in the strangest moments.

I pick my way across the parking lot with a bundled Charlotte in my arms. Inside people are milling about in front of a funeral board: pictures of my grandmother as a young girl on the farm, on a horse, in the early 1940s with my father in a cute suit, standing in front of a flat white house, with her parents, who are expressionless and shaped like barrels.

My grandmother was cruel to me, and I am not sad that she is dead. I feel like 93 is a pretty good run. She was rarely sick. She had friends and was comfortable.

My dad speaks first, and he tells the congregation that his mother once told him that he could have searched the whole world over and he never could have found a better wife. This is for my mother, to whom my grandmother was also cruel.

The minister gives a dorky eulogy about salvation that doesn’t happen “in the big city,” but instead in “a little church in the prairie.” His language feels vaguely pornographic to me, all this talk of being “chosen” and “choosing,” and my grandmother saying yes to God, again and again she said yes. I can’t stop thinking, sitting in the back pew nursing my child where nobody might happen to see my breast, that there’s no way this guy voted for Obama.

The only time I feel moved is when my second cousin’s husband sings a solo, halting and occasionally off-key version of Beautiful Savior at the lectern. He struggles through all of the verses without looking up. In front of him, on a table decorated with flowers, my grandmother’s ashes are in a simple black box.

After the funeral we eat fried chicken in the church fellowship hall. My grandmother’s sister introduces me to a man who is clearly suffering from dementia.

“This is Emily,” my great-aunt says. “She wrote a book about her baby who died.”

“Who are you?” he asks. “Did somebody die?” He looks around the room. Someone is slowly releasing a Jell-O mold onto a plate in the kitchen. A woman in an apron dumps more chicken into a bowl on the buffet table.

“My grandmother died,” I say. “Lois died.”

My great aunt is frustrated. “Listen,” she says, tapping the table in front of the man.

He looks at her, then at her hands. “Yes? Who are you?”

“I’m Emily,” I say.

“She’s a writer,” my aunt continues, “and her first book is all about…well,” she says, and flaps her hand in the air. “You tell him how you was made wrong.”

Continue Reading…

death, Grief, Guest Posts, healing

Seasons of (Beautiful) Change. Reflecting on The Death of My Daughter.

October 28, 2014
Miss E and Me

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By Becky A. Benson.

When the last remaining breezes of the tepid summer air turn unabashedly crisp and begin to fill with the recognizable scent of colorful leaves bidding their trees adieux we know that Autumn is on its way. These things, and so many others during this season bring a great sense of nostalgia to my heart and mind. The warm pleasures of draping yourself in layers of sweaters and scarves and of taking in the aroma of baked apples and pumpkin-everything blankets us in comfort. A literal season of change is underway.

In the Fall I wax nostalgic more than any other time of year. October is the month in which my youngest daughter, Miss Elliott was born. She too brought many changes into our lives. Our beautiful, blessed being, she was a teacher. My greatest teacher. She taught us what it meant to love unconditionally. She taught us what it meant to persevere. She taught us that a life, no matter how short or how small, was valuable, important and beautiful. She also taught us how to say goodbye. Continue Reading…

And So It Is, How To, loss

No Such Thing As Right.

February 27, 2013

You think you know what is right but you don’t. There’s no such thing.

There is only I am feeling my way around in the dark here and this feels like the table and this feels like the light switch but you never know until you know. Sometimes it’s when you flip the switch and the light actually comes on. Sometimes it’s not for years and sometimes you never know.

On Sunday my husband was about to get on a plane to go to a funeral in St Louis when his cousin called him from St. Louis and said that they were now going to have the funeral in L.A. and there was no point anymore for him to come. My husband’s cousin died 2 weeks ago when he’d had a heart attack and then crashed the tow truck he was driving. His wife had been in St. Louis at the time where they live. She flew out to L.A. immediately, and tried, in her blubbering hysterics, to decide if they should ship the body back to St. Louis or keep it in L.A.. My husband asked me what I thought.

I never go visit my father at his cemetery. He is buried in a Jewish cemetery in Pennsauken, New Jersey and it makes me feel depressed and cold. His tombstone is near a family friend’s who died of ovarian cancer when I was 18 and also the four brothers I’d gone to elementary school with who died in a fire.

I used to have extreme guilt about not going until I got very clear that my father was absolutely not there under that headstone. My father and I chat a lot in our dead-father to alive-daughter way and lord knows I write about him enough. He’s right here. He definitely is not there.

He stopped being anywhere in this world when he died in 1983, in fact. I can’t say what’s beyond but I can tell you that his physical body stopped breathing and that he know longer existed as a walking talking Melvin David Pastiloff. I can tell you that 100% for certain.

When Robert asked me what I thought I told him that it was a very personal choice but that I didn’t see the point of shipping the body as it wasn’t him anymore. The body has nothing to do with him at this point. But who am I to say? He told me that the wife would want to visit him at the cemetery once a week. (Naturally I felt a little guilty when I heard that being that I haven’t visited my father’s grave in years.) Once a week? That’s a lot. Okay, maybe she should ship the body. I don’t know.

There is no right with this, I said. There is only keep moving. Keep breathing.

So he was about to get on the plane and they called and said Don’t come and I went back and picked him back where I’d dropped him 2 hours earlier at LAX. They are having the funeral here in L.A. now. So much back and forth. No one could decide as if they were waiting for someone to come up with the right answer.

There is no right answer.

My mother didn’t let my sister and I go to our father’s funeral. She has no idea now why she made that choice. Someone probably told her that it was the right thing to do or that we would have nightmares. I have spent my whole life wishing I had gone so I could have heard the people tell stories about him and cry over him and wish him back into the world. I wanted to be there for his honoring.

Was it the right thing to do? There is no right thing. There is what gets done. There is you have to keep breathing and you have to do whatever you have to do to keep breathing.

Tomorrow I fly to Santa Fe to go to Ronan’s memorial.  (There is no right! There is no right I tell you!) I will miss the funeral of my husband’s cousin which will take place here in L.A. because I will be in Santa Fe at a baby’s memorial. There is nothing right about any of this.

I just keep moving around in the dark and hoping that sooner or later I find the switch for the light.

I imagine my father’s funeral as a dream-like painting and I am inside the painting.

It’s a colorful oil-based rendition of people in various stages of grief. My feet barely touch the floor in this painting. I am eight.

There are also people outside the painting, staring in.  They mill about, champagne and cheese in hand, commenting on us there inside the surreal painting of my father’s funeral.

We are still, those of us inside the painting. As if we are waiting for something.

We are waiting for something.

Someone outside the painting takes a charcoal pencil and shades our voices a color the sound of sand. The color of mute. We go quiet.

In my next painting my father’s face will be drawn closer to mine and his arm will touch my arm. And in this one he won’t even have to die. We won’t be at a funeral anymore.

Time will be un-stuck. It will move as we move. It will flow off the canvas and into the room of voyeurs searching for something, anything to talk about.

I can do that, you know. I can make it a painting come to life like that. I can create it over and over with brushstrokes and anecdotes because I wasn’t there and I will never have been there and there is no one that can say That was the right thing to do or That was the wrong thing to do.

There is no such thing.

There is no right.

There is only go and breathe and love and get up in the morning and take the next breath and the next and when someone tries to tell you that this or that is the right thing just look at them and keep breathing. Keep going.

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Little Seal, loss, love, poetry

The Art of Losing.

February 12, 2013

beauty-hunting-jen-logo-black1-300x88By Jen Pastiloff.

 The art of losing isn’t hard to master;

so many things seem filled with the intent

to be lost that their loss is no disaster.

Lose something every day. Accept the fluster

of lost door keys, the hour badly spent.

The art of losing isn’t hard to master.

Then practice losing farther, losing faster:

places, and names, and where it was you meant 

to travel. None of these will bring disaster.

 ~Elizabeth Bishop from One Art

I read this poem in my yoga class tonight. It’s been calling me so I went and picked it up.

So many things lost. My friend’s baby is dying and tonight when I asked her what I could do for her she simply said curse the fucking world that would do this to a baby.

I have.

Oh, have you seen it? I have slipped. I have lost my yoga-teachery-ness, my belief in you attract every single thing in your life somewhere between Ronan’s deadly diagnosis and my nephew’s rare genetic disorder. Something has been lost.

Ronan is now on medication through a tube taped to his face, but no fluids. He will die most likely in 3-8 days, and so yes, I am cursing the world and I will spare you the photos of him because, most likely, you will curse the world too. The fucking world that would do this to a baby.

When things like this happen (as if they can be categorized as things like this) we lose the piece of ourselves that speaks in platitudes, that says everything happens for a reason. Because really it doesn’t.

The art of losing isn’t hard to master. Oh Elizabeth Bishop. So wise. 

I’ve mastered it. After Emily loses her son Ronan she will have mastered it. (Hell, she’s a master already.) There are a lot of us masters out here in the world. 

We are a tribe of masters.

I think of my grandfather alone in his old row house in South Philadelphia. The same house my mom and aunts were raised in and the same house he has lived in for 65 years when he wasn’t off in another country. It’s dark and now referred to as the “ghetto” but after my grandmother died a year and a half ago, my mother went there and cleaned it up. She painted and cleaned and hung photos and dusted and took plastic off sofas. It looked nice.

My grandfather spent most of his life in the navy. He loves to talk about it. He has books, yearbooks they remind me of, and he sits down next to his guitar and shows me them. He points to faces and maps.

The first time I went to LA, was on a Greyhound bus in 1942 when we all moved to Hayward, California. That was a long crowded trip from Effingham, Illinois to LA then up to Hayward.

I lived there till I joined the navy in 1943. Worked at Hunts cannery and a place called Gillig Bus Company. They made busses out of truck chassis. I also worked 5 nights and Saturday and Sunday at a skating rink….I was the floor manager and was a really good roller skater then.

We used to cash our paychecks and they would give most of it in real silver dollars then, they would be worth a lot of money now. And when I was stationed in Pearl Harbor  in Hawaii in 1944 we used to get paid with 2 dollar bills with H A W A I I printed across them. That was to show the complaining civilians how much money the military contributed to their economy. It seemed to work.

Do you have any of those?  I interrupt him. 

(I used to have some myself, Pop but I’ve lost them. I used to have loads of silver dollars and $2 dollar bills. I don’t have any now.)

That was when Hawaii was only one of the territories. I was only making about $50 or $60 per month then, so it wasn’t very practical to save the $2 bills. 2 or 3 bucks would pay for a night in Honolulu and sandwich before going back to the tent city in a mosquito infested cane field where we lived. Some fond memories. The mosquitos there were at least as big as humming birds and sounded like model airplanes in flight. I remember one night that 2 mosquitos landed on my bunk and one said “shall we eat him here or take him back with”  the other said “no, we better eat him here because if we take him back, the big ones might take him away from us.”

(Oh Pop, you’re making that up.)

So many things lost, so many memories, so many $2 dollar bills and silver dollars.

I wonder if I can find all the things I have lost. Do they come back or is that it? Just like that, gone.

The answer: gone.

I hope I didn’t make you want to stop reading, but it’s true. My grandmother died and she is lost to my grandfather although I am sure when he fell in the bathtub last month he called out for her. He was alone and sat there naked on the floor of the tub for hours, his head bleeding before he somehow reached the phone and dialed 9-1-1.

But, do you think he called for her?

Damn straight. And when they had to pick broken pieces of tile out of his head I am sure he called for her or at least wished for her even though she drove him crazy with her complaints and crosswords, he called for her because who else do you call for?

Why?

Habit? Yes.

Wishful thinking? Yes.

Love? Yes.

Fear? Yes.

Desperation? Yes.

It’s all I know? Yes.

All of it.

Look, when we lose things and we become masters it’s not like that means we accept it. It doesn’t mean we don’t pound our heads against the tiles and watch the blood drip down into the drain as we shiver and cry. It doesn’t mean that just because we are masters at losing that we like that or that we even know what that means.

You think Emily knows what life will be like post-Ronan? No. She doesn’t. Yet and still, she is a master.

The loss has already entered her and the silver dollars will never be recovered. The mosquitoes have made their way in and gnawed through everything.

There is nothing left but still the loss is insurmountable and unknowable and being a master means nothing.

It means you know how to bury someone or watch them die or get old or not get old but it doesn’t mean you are free. You were once a roller skater, true, but that holds no weight now at this moment in the bathtub with your head bleeding like that.

Like Bishop said: it takes practice. Practice losing father, losing faster. To which I say: No. Enough is enough is enough. I am done losing. So many things lost. So many keys and years and people. Enough. I needn’t any more practice. We may be masters but we are not lost.

This is an art that doesn’t take years to hone. It takes a minute (maybe less), or however long it decides when it takes what it is going to take, but let me tell you this: being a master isn’t all it’s cracked up to be.

I’d trade it on for the baby’s fat arms, for the silver dollars, for the father lying on the couch in his cutoffs, for the chromosone not to be missing. I’d become all woo-woo for you and yea, everything happens for a reason and you get what you deserve if you’d give the title “Master” to another. But that “another” would always be me. I see that. There is no this or that, me not you, you not me, your kid not mine, my kid not yours. The Masters is no insider exclusive club. There is no discrimination. It is all of us.

We are all the Masters.

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. Yoga + Writing + Connection. We go deep. Bring an open heart and a sense of humor- that's it! Summer or Fall 2015. It is LIFE CHANGING!

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. Yoga + Writing + Connection. We go deep. Bring an open heart and a sense of humor- that’s it! Summer or Fall 2015. It is LIFE CHANGING!

 

 

 
 
courage, Things I Have Lost Along The Way

Roar.

January 18, 2013

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By Jen Pastiloff.

Lie to me. 

That’s what I might have well have said by saying I don’t look like I gained any weight, right? It’s going to be okay, isn’t it? You are not having sex with anyone else, right? 

Tell me what I think I want to hear.

Some people like it straight. They want to be told what is. They want what is and what can be without any embellishments or I will make you feel betters. State the facts, please.

Not me.

I want to be appeased. Make me believe I am safe.

Recently, I decided that the truth is a much better version of the truth than a lie.

In my late twenties I had this boyfriend, the one who wouldn’t let himself be called “boyfriend”. I loved this not-boyfriend boyfriend . I went on the birth control pill for this not-boyfriend boyfriend. We’d been together a year, albeit a year where I was unsure of my standing with him beyond the fact that I knew I loved him and that he made me feel like I was crazy. Birth control pills meant no more condoms and that made the not-boyfriend boyfriend happy.

The first thing I remember about the garbage bag incident that red wrapper invading me with its plastic face. Everywhere I looked: red. His carpet, red, the inside of my eyelids, red. The (unfortunately for him) clear plastic trash bag had fallen over. Inside, grays and whites of innocent I will not hurt you trash, and then there it was: a Lifestyles condom stuck to a chicken take-out container. Nothing but the torn red of the wrapper visible through the clear plastic trash bag.

Of course I will take out the garbage on my way out.

The significance of images, powerful enough to place two people right there inside my mind, naked on a bed. Maybe they’re in a dark room, the blue glow of the television bobbing on the wall. The woman with him (not me), imagined as perfect and leggy.

And then there he was on top of me. All I could see were red Lifestyle wrappers like sheep jumping fences. Rows of them. One condom, two condom, three…

 

(Wow, all that work you’re doing, for nothing! All that huffing and grunting

and straining and pushing and pulling and I am not even here with you. I am an eyeball in a trash bag searching for clues of infidelity.) 

 I am lying to you. I am not here. Only my body is.

But as long as you have my body here, does it matter that you don’t have my mind too? 

I wondered how many women lied in this way? Making love to someone with their body

while their mind drifts I’m fat, who else is he having sex with, what can I eat for dinner? I wonder what time the movie starts, do I even love this guy? I wish he would hurry up, why would he want to have sex with anyone but me? Why don’t I satisfy him, Am I not enough? I’m not good enough for him, what’s wrong with me? I’m fat. Shit, I never called my mother back. I have to remember to pay the electric bill., Damn it, is he done yet? I am good enough for him, he’s not good enough for me….. No, not like that, like this!  I can’t even say that to him because he will get offended. Maybe I should try being with a woman. No, I couldn’t do that. He is such a selfish lover. I wonder what time it is, I wonder if I could fit into those jeans? Did I shut the stove? What day is it? Do I smell bad? I wonder if he thinks I smell bad? He smells kind of musty. It’s so gross when a guy smells bad. Is he done yet? Man, what is he doing? Does he think he is King Kong? Why does he play so many video games still? What? Is he five? I’m tired, Ouch, that hurts, what is he doing? I wonder if they have a class for men to become better lovers at The Learning Annexx?

His eyes, red burning slits. All I could see was that condom wrapper. Obsessed by a red remnant that was most certainly not my remnant, I couldn’t move. I was that paralyzed with not wanting to know the truth. You love me, right? You love me, right? Right? You love me?

My mind can be made to believe anything.

I’d known this all my life but the trash bag incident finalized it for me. Everywhere I looked I waited to be convinced of  I love yous and You’re safes and nothing bad will happens and I am not going anywheres.

My face in his pillow (do I smell another woman? Whose hair is that lying there?) The red wrapper actually turned into a body and that body turned into his body and his body in someone else’s body. Metamorphosis. Isn’t this, the chain of events, absolutely astounding?

How quickly the mind latches on to what it wants to believe is the truth. How little it takes to seal the deal.

You love me, right?

This logical procession of things is survival of the fittest. Except the fittest know how to survive, they know how to dispose of any evidence instead of asking me to pick it up with my own two small trembling fists. The fittest aren’t as stupid as you I thought as I waited to be convinced that the condom wasn’t his, that he didn’t know how it got there, that he swore it, that he loved me and was sorry.

I used to think reality was relative and irrelevant. Tell me what I want to hear. Tell me it wasn’t yours. Make me believe. 

Mine, and perhaps yours too, is a mind that filters everything through a vicious process of hypothetical situations, of beautifully formed sentences, of what ifs. Images left in a room of the brain to ferment will create an alternate universe where no matter what time it was with my not-boyfriend the time in my head was a red red world where he was having sex with someone other than me.

You love me, right? It wasn’t yours, right?

That really was the end of the not-relationship although it probably ended before that if I don’t lie to you. Of course he convinced me that it hadn’t been his condom. That it had been old or that it was his cousin’s and I’d nodded and said okay and shook from the I’m going be sick adrenaline in my body but I’d stayed. And I stayed. 

And for as much as I wanted him to lie to me to make me feel better in the moment, I’d known the truth all along. 

We always know the truth.

If he hadn’t lied, if he’d just said Yes, yes it’s mine and I am sleeping with someone else. Or, aren’t you at least glad I am using protection? I would have had to leave him. The lies gave me permission to stay. They gave me permission to hate myself more. The lies got me off the hook.

I am writing this from an airplane where I get some of my best (read: distraction free) writing done. I just ran into a man on the plane, who, along with his wife, sent me to Atlanta 6 years ago to visit my nephew when he was newborn and in the NICU. There were complications and he was having his little tiny blonde head scanned. He couldn’t eat. He was floppy. I didn’t even know what a floppy baby was back then. He might not survive were words nobody wanted to speak. They’d been my regulars at the restaurant where I’d worked for years. As I walked away with tears streaming down my face to get their Arnold Palmers they’d decided they would send me to Atlanta the next day. You have to be with your family. No discussion will be had. I simply had to say yes, they’d said over turkey sandwiches. And so I did.

Six years ago I went and held my sweet floppy buddy for the first time, once he was released from the hospital in Georgia.

 When I walked onto the plane this morning, the husband was on the flight, because you know, the world is really quite small like that. It’s so small that people who did for you the kindest things will pop up on airplanes Houston. He’d tried to jog my memory as if it needed jogging. As if I could ever forget them and what they did for me when I was a destitute waitress with a sick nephew. He kindly asked So, everything turned out okay then? With your nephew?

The lies. The lies when he was born and until he was two years old, when he finally got diagnosed with Prader Willi Syndrome and Autism. The subtle lies. The bold faced ones. To ourselves mainly. He is just taking his time. All babies develop differently. He’s fine. 

 When of course we knew. But how much safer it felt to be nestled inside a world where there is nothing wrong then thrown out into the wolves and the world of missing chromosomes. The wolves would eat us. Let’s stay safe. The baby’s fine. There is nothing wrong. He is healthy. Swimming with sharks was safer than telling the lies, but what did we know? We were scared, and I, for one, was used to lying to myself. It was not a foreign country. It was home.

I’d said to the kind husband It did turn out there was something. He has a rare genetic disorder. That is actually where I am going now. It’s hard, but he’s doing great. I will never forget what you and your wife did for me back then. I think of you all the time.

We hugged and took a photo together and I thought about how many people have done kind things for me along the way and how many untruths I have told myself about not deserving them.

Watching my friend Emily Rapp deal with the impending death of her baby boy I see how liberating the truth really is.

She could flail her arms and curse God and fate and Tay Sachs. She could tell lies about herself and her luck and what is in store for her (she might do this on occasion, she is a human being, after all) but the truth is what seems to keep her tethered. Without the truth she would float away into You’ll get over its and He’s going to be in a better place and everything happens for a reason. 

The truth of what is happening now and now and now. 

That is all there is.

She, nor any of us, knows what is going to happen beyond his death and that is the truest true. What keeps her writing and breathing are the sure facts of what is true now and now and now. In the moments her son has a tube in his nose for medication and some fluids. In the moments he sleeps and in the moments he is choking and in the moments she sits down to write when maybe all she wants to do is beat her fist at the sky and scream but she writes anyway.

If you face what is so, you will be the roar that wakes up the sun. You will be the day and the night and then the day again because it is the one thing no one can take away from you. The truth of what is will make you the strongest mountain lion. 

The truth will set you free some say. The truth hurts.

I don’t know, I think lies will set you free too. They will unglue you so much that you will have no idea who you are anymore as you float above everyone else with your own set of facts and knowledge. The lies hurt more than the truth but in that slow and painful death kind of way. 

The truth hurts too, at times. But, it’s what keeps you knowing this one very important fact: who you are. The fact of who you are in the world.

The truth was that I was a girl who didn’t love herself enough to leave someone who hurt her again and again. The lie was that it was all I deserved. The truth was that my nephew has a chromosome missing and he could possibly eat himself to death if not carefully watched and cared for. The lie was that nothing was wrong. The truth is that Emily loves her son and that yes, he will die. The lie is that anyone knows what that means for her or for him.

We think we are protecting ourselves when we lie to ourselves or when we have someone lie to us. Oh, our sweet unquiet minds, so prone to crave safety. So willing to cling to what is not real, to trade in lovers who don’t love us, missing chromosomes, death.

11 years ago my childhood friend came out to California to visit me after having hiked the Appalachian trail for 6 months by himself. I remember thinking it was the craziest thing I had ever heard, and also being slightly jealous because I knew I didn’t have the balls to do that at the time.

I might have the balls now.

I am the mountain lion.

I have finally been able to turn on the light and invite it in. The Truth, shivering and lonely. And unafraid. 

My friend had told me he’d started with a huge backpack and that by the end it was almost empty. All the weight he’d shed during the hike. He said he’d gone to find himself and I remember thinking at the time that I didn’t know any guys that talked like that. Find himself? Find the truth?

I asked him how he’d managed though, at the end, with almost nothing in his pack? Didn’t he need stuff?

Nothing is lost when you dump the untruths. It’s the letting go, the starting out with so much weight and ending up with water and a sleeping bag.

The truth is your sleeping bag. It’s your water.

It’s what carries you the rest of the way from here.

It’s what says Yes, I do love you and I have been here all along. Waiting.

It’s what takes your quivering body lying there in the corner of your kitchen floor and picks it up. It’s what turns you into the strongest mountain lion.

Speak the truth. 

You know what? Fuck that.

Roar.

 

 

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it's magical.

Join Jen Pastiloff, the founder of The Manifest-Station, in The Berkshires of Western Massachusetts in Feb of 2015 for a weekend on being human. It involves writing and some yoga. In a word: it’s magical.

 

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

Jen Pastiloff is the founder of The Manifest-Station. Join her in Tuscany for her annual Manifestation Retreat. Click the Tuscan hills above!

click to order Simplereminders new book.

click to order Simplereminders new book.