Browsing Tag

Tay Sachs

Guest Posts, Grief, motherhood

What Grief May Come

October 4, 2019
dreams

By Becky Benson

Seven years on and the dreams keep coming.  Not with any discernable rhyme or reason; rather they enter my unconscious thought seemingly beholden to nothing other than their own unknowable will.  They’ve never been exactly alike, no repeating patterns, and for all other intense and purpose one would assume there was no connection between them at all.  It’s the underlying theme that connects them; one of grief and guilt.

It’s the details, so subtle they seem to play no real part in the story working itself out in my sleep-filled mind.  So trivial they are of no concern to plot of the wakeless movie my brain projects against the backs of my eyelids.  There’s never any alteration due to my actions.  After it happens a scene may simply stop, or the story moves along without addressing it again.  Only when I wake does the panic take the place of the air in my lungs.  And only in my wakeful mind does any of it make any sense.

It’s the only time I dream of her.  Never seeing her when I’m in a realm of happiness or a state of content.  The dreams themselves only ever spin a terrifying line of questioning that lacks rationale, but presents itself to me as unavoidable reality, nonetheless.  Dreams that ceaselessly rip open the innerworkings of my thoughts and force me to contemplate my deeply buried fears.

It could be hours, days or even weeks, and in my dreams I always forget.  It’s my fault, and I didn’t do enough.  She’s laid there, unable to move the slightest bit or cry out the smallest cry, for who knows how long before I realize I have to feed her.  I forget again and again.  I never give her enough.  I don’t give it to her often enough.  I try, but it never works.  She’s on the periphery of whatever else I’m doing, and by the time I realize it, it’s always too late.  She needed it long before.  And then she’s gone.

Over and over again it isn’t enough.  Over and over again in my dreams, as it was in life, I couldn’t save her.

Tay-Sachs disease is a genetic condition that is always fatal.  Infants who are born with the flawed recessive genes their parents passed on to them will suffer a relentless regression of their mental and physical abilities until death; usually by the age of four.  As their bodies shut down they will not develop the ability to walk or talk as typically growing children do, rather they will become paralyzed and blind, suffer seizures, and lose their ability to swallow, and all of their mental cognition.

Feeding was laborious and difficult.  Her inability to swallow well consumed my daily routine.  If liquids were too thin, she would choke, if her food was too thick, she couldn’t chew. I desperately fed her four ounces at a time, five times a day ensuring I maintained that perfect balance of nutrition, hydration, and caloric density that carried her body to the next morning.  Never more than four ounces at a time as she tired so quickly from the effort it took to consume even that small amount.  I blended in peanut butter, melted butter, bananas and heavy cream.  Scoops of formula and PediaSure accompanied strawberries or chocolate milk.  Baby food, step two, not three; three has chunks, were fortified with cereal flakes or Miralax, depending upon necessity.

Feeds could take up to half an hour each time, and even at that, she was lucky she was still highly functioning enough to eat by mouth at all.  Lucky she wasn’t aspirating her food, or her medication at that point.

I lived my life, day in and out for her.  I happily carved out a routine that was dedicated to her as the center of our world, and our every waking moment was spent making sure she had what she needed to survive for as long as she could.

It wasn’t long enough.  She died at the age of three years and four months, and even though I had known all along it was coming it’s something a mother can never truly prepare for.  It goes against everything we hold dear and that rings true in nature for a parent to lose a child.

I don’t remember when the dreams began, but they’ve haunted me since their inception.  I couldn’t fix her.  I couldn’t save her.  She was broken in this world.  I knew it.  It was biology.  I wasn’t afraid to confront the reality of it; I just despised the fact that it was our reality.  As a mother, facing the impending loss of your child is a soul crushing place to exist.

Grief and rationale rarely go hand in hand, so while I logically know that there was nothing I could do better, and nothing I did wrong, something inside always screams at me, clawing its way to the surface of my conscious thought that it was I who wasn’t enough.  I, her mother; the utter failure with the dead child.  We have one job as parents; it’s to keep them safe from harm.  One job.  I couldn’t do it.  And in the end, it’s true, I couldn’t.  I couldn’t stop Tay-Sachs from ravaging her body, and I couldn’t stop it from ripping her from this world and my arms.  Nothing I could have done better, or more, or different would have changed it, but still the dreams come.

They’ve shifted, recently.  It isn’t always her any longer.  Sometimes it’s kittens.  In the dreams they live in our garage.  I never quite know where they came from, but sometimes I remember they’re there.  So small and unassuming, hiding in dark corners without sound or movement.  I realize it’s been weeks since I’ve fed them, given them water.  I’ve forgotten their existence altogether, all over again, and I search through the maze of boxes and overflowing items to find out if they’re still alive.

Waking I recognize the garage as the garage of my childhood home, but in the dream it’s the garage in my home of today.  It’s cluttered and cramped, and no place to keep a living animal.  I never know why they’re there, and I never think to bring them into the house.  I just remember, finally, after all seems lost that they need food and water.

A couple of weeks ago a friend of mine posted a question on Facebook asking about what recurring dreams people have.  I shared my experiences with this, and how logical me knows it all stems from emotional me’s irrational feelings of failure toward her.  I wrote on the thread that I didn’t think these dreams would be as impactful as they are if she were still here.  We as parents are given new opportunities each and every day to make more and more mistakes, but when we see our children living and thriving, we know it’s all ok.  Parents of loss don’t have the confirmation of their actions having been the correct choices.  We don’t have the luxury of tomorrow.  Our children are gone, and whether we attribute that to our own actions, or lack thereof, we will never be able to rectify their loss within our hearts.

Predictably, someone else, someone I don’t know chimed in on the thread with some unwanted advice for me.  He said, “Becky, I am sorry you are having those dreams.  I’m certain once you are able to let the guilt go those dreams will end.  Think of the great dreams you could be having about her.  Love and hugs”.

I was mildly irritated.  It was something so flippantly obviously that certainly shouldn’t deign to be pointed out, especially by someone who likely couldn’t relate on a personal level (I took the liberty of assuming he couldn’t relate first-hand since he didn’t state his own loss of a child).  “As if it’s just that easy”, I thought.  Of course I need to let the guilt go.  I have nothing to feel guilty about, this is just how my particular brand of grief seems to manifest, no matter my attempts to avoid it, or face it hear-on to change it in these last seven years.  I didn’t respond.  In the end, he was trying for kindness, and I should accept it for that.

I didn’t give the comment any more thought and went about my way.  Last night I dreamt that I was with her again.  My husband was with us.  We had somewhere to go, but I stopped us before we left.  Thinking that we’d be out a fair amount of time, I recognized that I should feed her then, before we left.  I filled her bottle, expertly mixing the correct proportions of the necessary ingredients and fed her smoothly and easily.  When I she was done, I began to mix up some food for her in a bowl.  It was soft, but chunky.  It needed to be mashed.  I mashed it by hand repeatedly, taking great care and concern to achieve the correct consistency.  I fed it to her gingerly spoonful by spoonful until she had eaten it all.  For the first time, I looked longingly at her and relished in the fact that she was well fed.  It felt like an accomplishment.  I remember smiling.  The was no more of the dream after that.  It vaporized like dew in the sunshine.

Perhaps I had sat with this form of grief, repeatedly emotionally beating myself down long enough.  Was finally speaking it aloud all I had to do?  Was hearing the validation that my guilt was unnecessary all I needed?  Will the dreams stop now?

Becky A. Benson lives in Washington State. Read her work on Modern Loss, Brain.Child, Modern Mom, The Manifest Station, her Three Short Years blog, and in the pages of Taylored Living Magazine. She has both written and Spoken for Soulumination, The National Tay-Sachs and Allied Diseases Association, and The Center for Jewish Genetics. Purchase a copy of her memoir, Three Short Years, based on the death of her daughter from Tay-Sachs disease, here or connect with her via Rise: A Community for Women.

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Guest Posts, Intimacy, Sex

Sex, Intimacy, and Genetic Incompatibility

April 28, 2017
intimacy

By Becky Benson

The first time it happened I thought it was great.  Easier, less messy, a change up from the norm.  Win/win for me.  I didn’t particularly like condoms; the feel, the smell, the timeout in the heat of the moment while fumbling over a loudly crackling wrapper.  How romantic.  And I’m sure my husband was no fan of them, but it did make it better for me once we were done.  He’d just pull it off and toss it in the trash.  I didn’t have to lay there waiting for him to throw me his t-shirt to clean up with, I could just happily roll over and drift off to sleep.

The only problem with this scenario:  we needed them, which made it feel less like a novelty, a change up from the norm, and more like a reminder of what we were now facing, and how in so many ways, our relationship; our sex life would never be the same.

In 2009 my husband, Loren and I had been happily married for six and a half years.  Loving, committed, stable.  We had two beautiful daughters, Skylar, five, and Miss Elliott, ten months, when we learned that we were carriers of Tay-Sachs Disease.  We had no idea this genetic mutation existed in our lineage or that we had passed it on to our youngest daughter, who at this point was beginning to shows signs of missing her milestones as she grew.  Watching my seemingly healthy infant unable to master age appropriate tasks such as crawling, holding her bottle, and or imitating our speech, I suspected something much more was going on beside the usual variances in development, and unfortunately I was right.  With no treatment or cure, this neurodegenerative disorder would rob her of all of her physical and mental functioning before finally taking her life by the age of four. Continue Reading…

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

Cartography for Mourners.

March 2, 2015

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

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

beauty-hunting-jen-logo-black

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.

right-wrong

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, Jen Pastiloff, Jen's Musings

Roar.

January 18, 2013

beauty-hunting-jen-logo-black

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 2016 for a weekend on being human. It involves writing and some yoga. In a word: it’s magical.

 The 12 Day Detox is here. Sign up now for the next cleanse on November 30th. 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.


The 12 Day Detox is here. Sign up now for the next cleanse on November 30th. 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.

Ring in New Years 2016 with Jen Pastiloff at her annual Ojai retreat. It’s magic! It sells out quickly so book early. No yoga experience required. Just be a human being. With a sense of humor. Email barbara@jenniferpastiloff.com with questions or click photo to book. NO yoga experience needed. Just be a human being

Ring in New Years 2016 with Jen Pastiloff at her annual Ojai retreat. It’s magic! It sells out quickly so book early. No yoga experience required. Just be a human being. With a sense of humor. Email barbara@jenniferpastiloff.com with questions or click photo to book. NO yoga experience needed. Just be a human being

 

Little Seal, loss, love

Dirt.

January 10, 2013

I am sharing this again because it is so dear to me. Please read this. Please send Ronan love and prayers that he is not scared when he passes. He is a the end of his little life. Love you guys. Thanks for reading this one. Please share it.

The Land Of Enchantment.

A couple days ago, we took a road trip.

Emily, Ronan, and me. Two-year-old Ronan, packed in the back, his small, floppy head propped up with stuffed animals and socks, his face reflected in a crooked, little mirror, so Emily, his mom, could look into it every so often as she drove in case he had a seizure or stopped breathing.

Tay Sachs has its hold on this little boy. This perfect little boy making cooing noises in the back seat as we marveled at trees and patterns of light and talked about what it means to be happy and how even when you are happy, you are still a little bit sad.

Or at least I am.

Our first stop after we left Santa Fe was the The Chimayo Sanctuario.

It was hot when we stepped out of the car, hotter than it has been in Santa Fe. Gusts of warm wind blowing my dress around in a way that would normally make me laugh and feel sexy and silly, but this day, I immediately felt tired and wanted to lie down in the little outdoor church area. Growing up as a Jew, at least until I was eight, I didn’t really know what to call that little area, but I knew I wanted to lay my head down on it and rest as people walked by and snapped pictures or prayed. Some smoked cigarettes, which felt somehow unholy given the heat.

Emily had told me as we walked that Chimayo was the meth capital of the world. I watched the smokers in front of us and wondered what meth felt like. I didn’t really want to know, but we were in the capital and the heat made me tired and curious.

Emily had said that she loved Chimayo and that it had holy dirt.

She had me at holy dirt.

My hearing had been especially horrendous during this trip. As if there are things here that mustn’t be heard. Things of loss and heat and dirt and dying babies. Most of the things she told me during this visit I only half-heard, so maybe when she said holy dirt, she didn’t say that at all.

But there is holy dirt here indeed!

We entered the church and sat in the back. The art on the walls somehow reminded me of my mother, so I kept whispering to Emily how my mom would love it here. It was vibrant and colorful, its beauty simple and poor-looking. I knew my mom would love the folk art like Emily did. We traced our fingers over the woodcarvings and the blue of the pregnant bellies.

There were a few old women up front praying, their mouths repeating the same shapes over and over. Although I did not know what they were saying, I knew that they were deep in reverie, deep in connection, somehow sitting on the bench and yet also floating somewhere with a dead relative or baby or Jesus himself. Who knows? They were in a trance but also somehow aware of us as we walked by, enough that they smiled with their eyes and part of their lips without stopping the flow of prayer. It was like a magic trick. I felt weird to stare yet I did.

I mean, I suppose I went in there to pray in some way, although I didn’t know it until we walked through the door.

I didn’t even know what Chimayo was until we got there. But these women were praying with every ounce of their bodies, like they were born to do this and had waited in a long line of life events that included births and deaths to get here. I was just hoping Ronan wouldn’t suffer and that Emily would be okay. I didn’t even have a real prayer. I just quietly looked over at them and then to the front of the jaw-dropping gorgeous New Mexican church and sent a wish out to the Jesus statue in whatever language I could muster.

I think I put my hands together in prayer, like I do when I teach yoga, and asked him in sign language “Please let Ronan feel nothing. Please let Emily feel something.” 

We went to the room where the holy dirt was, and it clearly said No Pictures, but, naturally, being me, I took a few. I am like a thief when it comes to inspiration. Whether words or images, if I see it and it touches that place where things are born, I must capture it.

I took some photos and then Emily went in and scooped up some holy dirt and put it on Ronan’s sweaty head and his little feet where she had painted his toenails a gold, glittery color. I went in and did the same. I also took a little baggy of it for my sister or anyone else who needed holy dirt. Who knows, maybe I needed it?

We went into the Vigil Shop where they sold popsicles and chile and souvenirs. (They even ship chile! The sign out front boasted.)

We agreed, as we stood under a tree for a moment of relief from the sun, that the land felt different here.

I felt much like I do in Ojai, California, where I lead many of my yoga retreats. More connected to the land, more inspired and awake, like there was a current running through me that had been asleep but, upon stepping in holy dirt, was reignited. Like I became a person again after a long time of forgetting how to be.

Chimayo felt sacred in the way that The Père Lachaise Cemetery in Paris did in July, when I went to see where Jim Morrison was buried, not because I wanted to, but because I was dragged. I went with my childhood babysitter, with whom I had been reunited after her only son, age nineteen, was killed in a drunk driving accident last August. It was her greatest wish to see Jim Morrison’s grave. I was annoyed at having to go, especially because it was half-raining, I was sick, and we got lost, but once we got there, it was like nothing else. All the tombs like little houses, each different from the next in the most beautiful ways. I wanted to lie down on them and see what it felt like—not in morbid way, but rather to be connected to such beauty. Rarely have I seen such beauty associated with death.

I felt like that in Chimayo—far from Paris, Jim Morrison’s grave, and Ojai but with the vast knowledge that the holy dirt was the same. If I tasted it in Paris or California, or if I knelt down in that little room in Chimayo, it would all taste the same. I would be healed or I wouldn’t, but it would be the same. I wasn’t really far from beauty wherever I was in the world at any given moment.

We carried on to Taos, and I remembered the first time I had been there.

I drove across the country with my mother, sister, and best friend at the time. I remember eating tuna fish from a can in the back seat and alternating drivers. I remember the colors in New Mexico being so different from what I knew growing up in New Jersey and California. In Taos, I had a flood of memories, which is good because I am writing a book, but I had to shake them off to be present for Ronan. What if this is the last time I see him? 

Emily says maybe it will be, or maybe not. No expectations is what she is working on. No expectations of what his death will be like, whether or not she should travel to Germany for a week in October (because it could as easily happen while she is teaching or at the store). No expectations of what life will be like after.

As we sat in the chapel, Emily told me of the pilgrimage people make to come to Chimayo, the last mile or two on their hands and knees so they arrive bloody to the church for their penance. I was in disbelief that people still did this sort of thing but also in awe at the sheer will and belief in what is possible, in miracles and magic and holy dirt.

There were children’s shoes and booties everywhere, left as offerings, which made me feel sad as I sat there with Ronan because he would never wear shoes to walk or run or to look cool for a girl on a first date.

He would never walk or crawl on his hands and knees to make a pilgrimage.

That’s when I decided that I would make one for him. That actually that is what we were doing out there in the hot New Mexican sun as we walked on bridges and stood in churches and sat in cars.

Here we were, eating holy dirt and driving through The Rio Grande Gorge as we listened to bad music. We sang out loud, and it was all for him. It was all so we could keep giving him these particular pieces of ourselves, these grains of holy dirt, to take with him wherever it was he was going.

~~~

Please order Emily Rapp’s book. It will be out in March. I just finished it and WOW. Click here.

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Beating Fear with a Stick, Inspiration, my book

I Am Not Afraid.

January 9, 2013
The-Things-That-Get-In-The-Way.
It was the theme of my yoga class this morning. Let’s remove them, I suggested to my beloved class. Their eyes got wide and afraid which I understood very very well.
 
They looked at me as if to say I just wanted to do a couple of downdogs and sweat, why do you have to do this shit, lady?
 
Of starting a new book. Of finding a partner. Of writing. Of becoming a yoga teacher. Of having a baby. Of leaving a partner.  Of traveling. Of quitting a job. Of getting a job.
Of being happy.
 
Those types of Things.
 
But then. But then, I will have nothing to hold me back. The afraid eyes widened.
 
May whatever is holding me back reveal itself. May I have the courage to release them, I suggested to the room before we took our first Ohm.
 
How scary it is to have nothing to hold you back anymore, to be so unencumbered. It is a thing of power and most of us are scared of power in the way we are scared of what we don’t understand: love, aging, death.
 
I was afraid to let go of my label of “anorexic.” Then who will I be? Anorexia was my set of crutches and I walked around town with them under my arms, and a small little limp, just enough to handicap me when it came to making a move in any direction whatsoever. I will not let go of these crutches I demanded as I slept walk through my life. They are mine!
 
I was not above beating people with them either. Anyone who came to close to taking them away from me. These are my Things That Get In The Way. Nobody can touch them! as I poked the offender with the soft end of the crutch. Gently, so it wouldn’t hurt. They would know I still loved them but that they could not take my crutch away.
 
What things get in the way of the small pleasures that wait for you when you wake up in the morning? Before your eyes can focus on the lampshade or on the other body in the bed, what things enter your mind as if they belong there? What heavy objects knock about in your chest before you even put your jeans on?
 
The things that get in the way are often real things, ordinary things, things that you will forget as soon as you sit down and bite into your sandwich. Then there are the things that are not ordinary, that are so not ordinary in the way that they have caused you to stop and take inventory on your life as you know it. 
 
For example: your baby dying, as is my friend Emily Rapp’s baby, a very real and horrendous thing to have to wait for. It will part the sea of you. One side of you will be on the shore with your baby son, and the other side of you immersed in the sea itself, drowning fast but not fast enough. What is getting in the way of you and your baby is a very real and unspeakable thing and you can’t even move, you are that split in two. Both drowning and not drowning at the same time.
 
Then there are the things that get in the way which are soft and malleable. And still very precise. They know exactly when to get you. They will leave no stone unturned and will leave you to bleed there on the table if you don’t pay attention. They know that right there, first thing in the morning, before your eyes can focus on the lampshade or the other body in the bed, that there’s the best time to get you. They know they can make you scared of what is going to happen to you, of what will people think, what if you can’t have a baby, what if this isn’t what you really want?
 
And your eyes start to come into focus and nothing looks like same. The carpet, the sink, the wall, the other body in the bed. You touch everything to make sure you are awake, and of this you can’t be certain. If you were awake wouldn’t it all make sense?
How you are right where you should be and that there can be no question of that because there is no other option. You were never not here. You were never not going to lead this very life. There is no alternative. As much as you try, you will never be able to wake up and have had a different history. You will always have turned right. You will always have chosen this.
 
So why doesn’t it make sense?
 
Because things have gotten in the way.
You have to grab them by the throat and let them know that you are not afraid. Say it: I am not afraid.
 
Two weeks ago, before I got my glasses in London, I dreamt I’d gone blind. In the dream, I’d felt around for things I would recognize, corners of tables I knew from bumping into them, people I loved and their shoulders and noses. Their smells. I was scared that darkness would be all I would know anymore. As if my own skin were falling over my head in a black hood.
I couldn’t remember what anything looked like in the dream. As if along with my sight, all of my memories vanished too. What a sunset had looked like or my father’s face.
Slowly, it seemed years passed in this dream,  I became unafraid. I started to remember what things had looked like. And they looked more beautiful then they had in real life. The sunset was the kind you swear you’ve never seen anything like it, not ever and my father’s face was real, and he was breathing, his nostrils flaring a little with each exhale. 
 
I’d woken up sweating and cold in our hotel room, but as soon as my eyes started to focus on the lampshade and the other body in the bed, I realized what the dream had been about.
 
That I was not blind. That I could see. That is what the dream meant.

And as soon as I say I am not afraid there’d be nothing in the way.

i__m_not_afraid_anymore_by_patu_
healing, loss, my book, Things I Have Lost Along The Way

Chicken Bones In The Throat.

November 9, 2012

The things that get lodged in us.

Those that need dislodging like a chicken bone in the throat.

How some things get stuck. And others, not so much. Other things in their own river-like way flow through us and by us and if it weren’t for a photograph we might forget them completely. (My 20’s! Certain men I’ve dated! 7th grade! Books I have loved and forgotten.)

Things that get stuck: certain sentences and the way someone looks at you, the beat of a song whose words have long since vanished, the way it felt to be young, how your father died.

Last night as I was working on my book I called my mom to ask her some questions about my dad and how he died. I wanted to know precisely the cause of death and which drugs he took and exactly how many cigarretes he smoked a day. I wanted the facts as if the facts can turn into something soft and malleable, as if they can change if you hear them enough. They do, don’t they?

I thought my dad died of a heart attack until one day when I was 13 my mom told me that he’d had a stroke. From 13 until last night I’d thought he’d had a stroke. My mom said last night that it was not a stroke at all. Oh, the confusion. How did he die, dammit? I need to know exactly what went down on that night in July, 1983.

So Mom says it was this mouthful of ugly words: Atherosclerotic Coronary Artery Disease.

Which is caused by blockages which can be caused by the unfathomable amount of cigarretes he smoked daily or the speed he took. Same thing Whitney Houston died of.

Then Mom tells me this bit of news which is now forever stuck and will not be dislodged. Ever. She told me that the hospital had told her he had vomited and choked on his own vomit and that was how he died. Offical autoposy said, however, Atherosclerotic Coronary Artery Disease.

I want to unhear this.

Is it possible to do this? I, of all people, should be entitled to this gift with my profound hearing loss. It must be how my friend Emily Rapp felt when the doctors told her that her son Ronan had Tay Sachs Disease and would die.

It’s a mistake! This shouldn’t be! This was an accident. This wasn’t any “meant to be” bulllshit yogis are so fond of saying. The way I see it, this was a f*ck up.

Just whose f*ck up, I am not sure, nor do I want to guess, but it was definitely some kind of mix-up. I mean, choking on vomit and dying? How can this be fair at all? One minute you are in your bed watching an episode of M*A*S*H on tv and the next your are drowing in your own bodily fluids? In what world can this happen?

How can death be that easy when life isn’t? 

To dislodge means to leave a place previously occupied. This is what happens with death.  (I imagine.) You dislodge yourself from your body. And that’s that. If it weren’t for the things that stuck, things like your smell, or rather the smell of an old leather wallet and how it has become your smell, and your sheep’s laugh, that high cackle and how it would run around the room before it landed back in your throat. Other things that stuck: the song You Are My Sunshine keeps you here, maybe not in body but certainly in heart because that’s where the pain is when the song is heard, no matter when or where. That rusty dagger is stuck in the heart since you used to sing that song every night, and maybe that isn’t a bad thing because certainly some things need to get stuck in us or we might forget who we were.

I asked my mom to send me an email with all the facts she could remember being that most of mine are old and broken down having been told so many times since I was eight years old that they lost their functionality sometime around 1990-91.

Another sentence that stuck:

He used up his body.

How can I make that sentence go away? What is behind the sentence is more what I want to go away and that is the reality that my father used up his body in a way that suggested that the novelty of it was over, that the use of it was no longer needed, that in essence it was worth nothing. That it was trash. What else do you think of when you hear those words, which are nothing short of true: he used up his body. Depleted. Bankrupt. Drained. Empty.

So things get stuck in me. Maybe because I am a little bit obsessive. But aren’t we all?

What gets stuck are the things that shock me back into breathing, that slap me in the face until I realize this fact: It could be me.

How easy it is to do really. To let yourself slip.

No, maybe you don’t smoke and maybe you don’t do any drugs but maybe you talk to yourself in such a way that it chips at you day after day until there is nothing left. Until you are used up.

Maybe the things that get stuck are there so we pay closer attention to the facts. Had my father, I doubt he would have killed himself. Oh, you think he didn’t kill himself in some way? Look closer.

I revise my earlier statement about wanting to dislodge these things. I will never be able to unstick these thing and that is fine. You want to know why? Because I am writing a book and my greatest wish is for at the very least a few things to be stuck so I can remember long enough to get them on paper.

Secondly: some things must always be stuck in me so I remember that I am not unfailing. As painful as some things are and as much as we want them to not have happened, they did. They will always have happened.

They existed somewhere in the world, in some space time continuum, and they are some small molecule of us, even if they happened to our ancestors before our birth. The way we react to the world is in drect relation to the stuck things within us.

The way we listen to a song. The way we fall in love. The way we look at our children. If we even have children.

All of it.

The stuck things make us who we are. They help us remember where we have been.

by Jenni Young of course