Ourselves and others.
We all have a choice.
Ourselves and others.
We all have a choice.
Walking into my apartment felt better than I had expected. Briana had been busily reading Fast Feng Shui and had rearranged enough of the shared space that some of the clogged up chi had been released from the folds behind piles of bills and the shoddy art student pieces that clung to the old brick walls. The house seemed lighter, the belly of memories partially digested with the cleaning.
The dreaded moment had arrived. Me, alone in the apartment on a Sunday evening. The sky was heavy with grey but broke at the horizon – the scattered orange light casting a soft glow on the shipping cranes.
I had grown to love the cranes over my time in this apartment. They stood like Strandbeest, waiting for the perfect gust to crawl across the East River to Manhattan. I particularly loved when I could hear their wailing at night as they hauled cargo, metal on metal — a reminder of the salty waters just a few blocks away.
Hello Strandbeest I thought, standing at the window. The B61 passed, beeping as it lowered its steps for an elderly Columbia Street resident. The oven quietly breathed with roasting vegetables and cars glided steadily over the asphalt below. In these moments, my life had become a meditation of sounds, of the world happening around me. I had inhaled through leaf blowers, babies crying, Gary barking and people conversing. I had exhaled with the world but also without it, often drifting in the syrupy shadows of the clacking feet of couples and dads with their babies rushing home with a box of hot pizza on a Sunday evening.
The Strandbeest have watched me for years, now, through the cycles of seasons and the growing pains of my saturn return. I fell in love under their gaze, after a shy, rather awkward encounter that would softly unfold like a tiny origami creature. My heart broke under the arch of their metal haunches as my shoulders crunched into his chest for one last confused hug, the smell of cologne and cigarettes carrying me to the cranes, away from the crushed tulips on the ground below and the sagging metal tennis court fence.
I molted my old life at the foot of the Strandbeest, each human attribute I had taken for granted shed like an exotic bird feather. The morning I woke up with the hangover of cancer, the sunlight crept through my eyelashes, soldered together by salt the day before. I laid with my hands on my belly, imagining my crystal heart to the soundtrack of new age music like Into the Blue and Drift. No longer able to run, I walked to the gates of the shipyards, where a life sized nativity scene playing Christmas music guarded the entrance. I wanted to fly away at those moments, willing myself above the crashing cargo and into the clouds.
I would visit them at night — a family of enormous prehistoric skeletons of varying sizes twinkling under the velvet sky. I took solace in the fact that they were always there, someone always present to load and unload their containers. I imagined if I ever had to run away, there would be a small village of longshoremen to protect me. Behind the gates was a place of graphic colors, a secret society of ocean dwellers who climbed the limbs of the Strandbeest and could escape in the constant lapping of water.
Life is a million layers. It is a whirl of light and dark, occasionally giving a spectacle where the twilight gives way to dusk — the messy in betweens of love and loss. She was born in the cracks of soft pink and warm orange, somewhere between the sun and the darkening clouds and the water. With my loss, I willed some of my mystical energy to my niece as she floated in the briny waters of my sister’s womb. The Strandbeest, and their steady presence blessed her as she screamed into the world, their majestic presence bowing to me in a solemn offer of renewal.
I sit and listen to the sounds of the world outside my window, third eye to the shipyards. I am beginning to understand that there is no self in this journey — I am the groaning of the bus as it sails past my window, I am the family rushing, I am the fog horn bellowing, I am winter’s persistent chatter. I am a tapestry of sounds, of light and shadows, of energy. I am the Strandbeest, filling my great belly with love, gazing over the the new life I have been given, the tiny life I have just received.
Thank you Amanda Palmer, for this incredibly moving talk on the art of courage, faith, and interconnection. What a beautiful world we live in.
When I arrived here, I told my mom that I couldn’t go back to New York until I saw the dogwoods. Rain storms came and went, my impending return to New York lingered and my patient lust for the dogwoods began to wane as I grew restless being far from any semblance of a professional life. I would have to go without my dogwoods.
As I planned my trip back to New York, I began to think a lot about the word courage in my daily reflection. What is it. Where does it come from. Do we all have the capacity to be gut wrenchingly courageous?
Oddly, this is perhaps the most frightening moment for me in this journey. Deciding to push play again has been unexpectedly accompanied by spikes of exuberation and panic attacks that take my regular breath hostage at any given moment.
In his famous book, Man’s Search for Meaning, Joseph Frankl writes about life in Auschwitz: “But there was no need to be ashamed of tears, for tears bore witness that a man had the greatest of courage, the courage to suffer.”
To be clear, I am not comparing my situation to life in a concentration camp. Frankl offers everyone the perception of suffering as a threshold in the human psyche. Once penetrated and embraced as a part of life, we come to understand that the darkness (as well as the light) are part of a truly human existence. To tuck suffering under your pillow at night and rise the next morning to pull it out and hold it over your heart like a pocket square is not necessarily martyrish. It’s appreciating what it means to be fully alive.
I won’t bore you with the plethora of chaotic worries that wax and wane throughout my days as of late. But I keep returning to the future moment, where I arrive into my Brooklyn apartment, a weary traveler with a suitcase and a dog and I look around, thinking, now what. How will I feel when the world buzzes around me as I wake up to the break of a new water main from the construction site next door, bumping Dominican salsa music or the wail of a passing siren? Will I feel deeply lost after leaving the sticky embrace of the South or will I feel electric with grimy and glamourous New York energy? What does it feel like to step into the world as a new person — one that has gone to hell and back and marinated in her dark boiling waters?
There are the ways of courage that I know. My father leaving home at 17 to find a better life in the United States, speaking no english. My mother going back to school to get her PhD at 42 and then becoming a professor at UC Berkeley, now an endowed chair at the University of Alabama. I am not sure what neurological nest resides behind courage. I don’t think it’s the simple animal drive to survive or to meet some subliminal darwinian purpose. Rather, I think true courage, the kind that penetrates some deep, deep part of who we are is a connection to God. The tangling of that bigger thing with the rawness deep inside — the thread that sews our insides with the mystical universe — is this nagging realization that following our true path leads in no other direction.
A lot of the time, I wish that I could sage my life. That I could find comfort in the place of ache, where my spirit has been wounded by sickness and bruised by lost love. Unfortunately, I have learned over the past several months that courage is rarely associated with comfort. It is associated, however, with choice.
Coming back to Frankl, he describes the presence of self-determination in the Nazi concentration camps:
They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of human freedoms–to choose one’s attitude in any given set of circumstances, to choose one’s own way.
And there were always choices to make. Everyday, every hour, offered the opportunity to make a decision, a decision which determined whether you would or would not submit to those powers which threatened to rob you of your very self, your inner freedom; which determined whether or not you would become the plaything of circumstance, renouncing freedom and dignity to become molded into the form of the typical inmate.
Frankl’s words, while beautiful, are not easy to employ in practice. I remember chatting with my best friend one day on Skype when I was sick. I had experienced strong urges to disappear, to live in the woods and hide away from everyone; everything. One day I told her that I needed to leave. “From where?” she asked. “Earth.” I replied. For me suffering was the most isolating thing I had ever experienced and I had no idea how to control my state of mind.
Cancer, like Frankl’s experience in a concentration camp is so difficult, because it calls into question our ability to choose; the only tangible goal to survive. To be courageous is to seize the choices that are terrifying. They are terrifying because they extend beyond mere survival; they shape the guts of who we are and who we have the potential to become.
Easter Sunday, I went on a walk with my mom through the streets of hilly Vestavia — a small suburb in Birmingham. It was a glorious day — sunny, and slightly humid. And then I saw it. A blooming dogwood tree. Standing under the canopy of green petals, I smiled with my eyes closed. The dogwoods had come for me. This wondrous tree, love through adversity, was beckoning me to go, blessing me with the courage to live and love again.
My pocket square these days is lightening in weight.
Once an unbreathable wool polyester blend,
It had melted into silk when I stuffed it under my pillow last night.
There are days
I want to leave it under the folds of my sheets
But it flutters behind me,
Connected to the threads of my invisible organs.
Slowly, I am learning to accept its shadow over my furrowed third eye
I am understanding that it can saturate even the brightest colors;
And sew my heart to the universe in all of her grace
It weaves through the dogwood canopy
Reminding me always, of choice
Of new beginnings.
I walk out of my acupuncture session, dazed by the piercing sunlight. Heading up 9th Street toward the subway, a vacant lot is netted with the black screen of construction, occasionally rumbling with a passing train.
One immature oocyte. I listen again.
Surely this is a mistake. Only yesterday, I fluttered out of anesthesia, holding Damian’s hand, doctor assuring me that they had retrieved the one egg. Half in my drugged dreamland, I asked Damian when he was going to marry me, the first words that had entered my mind and left my mouth, conscious enough to visualize happiness.
I stagger in the cool shade of a crumbling Victorian. I am drunk with grief. The one egg, gone. Somehow, I make it onto the train headed into Manhattan, my vision blurred by desperate tears, the sun gripping me in its cool spotlight until the tunnel eclipses the frosted glow. At 23rd Street, I drag myself up the stairs. The back office is empty when I arrive. I permit the weight of sadness to overtake my body as I lay my face down onto the cool marble work table, body shaking with convulsions of anguish.
All had been for naught. The hormone shots into my soft belly, the pleading with my family to understand why I so needed to try to freeze my eggs. The determination I saw in Damian’s brow as he mixed the drugs before calmly injecting them into my abdomen. The thousands of dollars I didn’t have, the cold wand up inside of me prodding for signs of life. The doctor indifferently telling me they had underestimated how quickly my body would respond to the aggressive hormone regimen. The heavy curtain enveloping me knowing that this was my only chance and it had failed.
I look into the mirror in the office. Mark’s partner had been a flamenco dancer from Puerto Rico — the reinforced floors his practice space. I can imagine his tall dignified spine and graceful arm in the mirror. But instead of his handsome gaze, I see creased bags leaking uncontrollable tears under neon lights, my spine curled like a wilted, dying flower.
One immature oocyte. I will never have my own family. I had risked my health for nothing. I am spiraling down into the center of the earth, until I am on 23rd Street, dazed by the muffled sounds of Manhattan. I see Joe. I silently collapse into his arms, body limp. I feel him wave to Tim and Boris. Go away his hand instructs as he holds onto me, allowing me to plummet through the depths of my loss. He doesn’t say anything. He just lets me cry and cry until the sadness begins to drain into the body of a fellow cancer survivor.
I knew my chances weren’t good, but I had seen visions of a little girl with big brown eyes, a mirage in the gnawing hole I was living in. The daily blood tests had left my arms bruised and veins swollen, forcing the nurses to poke holes in my hands and forearms. One day I saw the feet of a woman in the adjoining blood test cube — one foot shaking up and down, I could hear the whispers of her husband’s reassurance as her blood was taken. I boiled with anger.
I had dutifully traveled to the upper east side for my 7:30 am appointments. Grin and bear it, I thought, as the skin on my stomach grew increasingly raw and the cramps from hormones more painful with each passing day. My mornings were a cocktail of anger, sadness and hormones. Anger at the wealthy looking women who slipped in and out in their power suits. At the number I had become. January 3rd, 1980. January 3rd, 1980. January 3rd, 1980. Sadness that I was a vagabond wandering through a gray world of suffering; not by choice, but by an unlucky turn of fate. I scanned the room every morning, sure there had to be another one of me. There never was.
And then the last morning came. The morning of grief, where I left the ultrasound room and melted onto one of the waiting room couches in front of an older couple. Unabashedly, the tears plummeted down my face and onto my lap, and I wiped my nose on my sleeve. My chest heaved as I gasped for air.
Joe convinces me to come back upstairs. I agree, mainly because the prospect of going home is even more depressing. Tim and Boris say nothing, but I know that they feel the weight of my burden, its silhouetted figure darting in my footsteps. The day fades. I tell my mom and Damian, each announcement accompanied by a crippling tidal wave of sadness.
It’s dark outside when we finally leave and my phone rings. The doctor is on the line, telling me that they were able to mature the lone egg over the course of the day. Joe jumps up and down and hugs me.
I am swept to the day before, right before my procedure. I was placed in a room with an older woman, who had undergone so many IVF cycles, she had forgotten. I was planning on stubbornly not speaking to her until she described how she had commuted to the city an hour and a half each way to have her blood taken everyday for the past two years. “You are going to be fine,” she repeated over and over again. “They are going to get that egg and you are going to be fine. It just takes one egg, just one.” I still remember her face, her blond hair pulled back under the blue hair net, her ability to laugh when she was putting her body through hell.
In this moment and that moment, I understand that we are not alone in our suffering. I had jealously snickered at women like her — the infertile ones whose bodies had failed them without cancer. And yet we were together in this same room, our paths meant to cross in this instant of shared compassion before many moments of complete surrender. They called me to the operating table and I laid down to face my destiny. Not as a number but a courageous, determined woman. And now on a nightfallen Manhattan street, I think of her as we lay together as sisters, dreaming of the child we will never bear.
It’s a sunny day in Birmingham, Alabama. I woke up this morning, the cool air floating over my blankets like fog, and I laid there, eyes closed, listening to the sound of birds chirping outside. Some mornings I wake up with a noose around my heart, the reminder of what I have lost and how I must journey on. But today, I felt a little lighter — my body intuitively understanding that I could enjoy these moments of peace.
After leaving New York for a short healing sabbatical, I have noticed the silence, the stillness, as the tall towering white oaks in the yard hover over me with comforting sighs. Things move slower here — I go to bed early, rise with the sun and spend much of my time lost in reflection.
I know that people will read this post and wonder what is it like to go through such an experience. To walk into a doctors office one day, and numbingly, and unsuspectingly hear that you have cancer.
To tell you the truth, I still don’t know what it’s like. Entirely. I spent the last months of 2012 in a whirlwind of phone calls, doctors visits, insurance haggling, hormone shots, blood tests, sonograms, MRIs, CT scans, lung exams, EKGs, more pelvic exams than most women will ever have — and still — it feels so distant, so detached from where I sit today composing this post.
In all honesty, I logged into my WordPress account today — the first time in months –with the intent of closing it down. It all got too personal, having blogs about my insurance, my health, my body being open to anyone on the web.
But then I landed on the home page. October 31. I was still cancer free as I knew it. How lucky I was to just have thousands of dollars in medical bills. I thought back to that day — those days — when I knew I was sick, and then I thought I was better. I will never forget clutching my boyfriend’s hand in the doctor’s office as he uttered those words, the disbelief coursing through my body, the shock and panic that I was going to die. How life can change in an instant.
The period of sickness passed as quickly as it had come, each day a race against time to make the best decision, to honor my body the way it had been born, to save my fertility before I lost everything.
And then it was over.
I was alone in New York. The bitter winter jutted daggers of pain into my abdomen, but I was determined to be normal. Within a month after my second surgery I was up every morning, getting dressed, heading to the office. I wouldn’t let this take away my spirit, my ambition to work and to create and to succeed.
One by one, things began to crumble. My relationship, my stability, and my soul. I found myself one day throwing up in a planter in the flatiron district at lunch time, not because I was sick, but because I was broken. My body betrayed me. Go home it said. Be alone and curl in a ball and don’t come out until you find your spirit again.
I didn’t listen. For days I continued hunched down, pushing, pushing, as we tend to do in New York. I would go to my psychiatrist at Sloan Kettering and blubber uncontrollably, incoherent, drowning. And then one day, I got into work early and I just sat at the table sobbing alone. I had everyone around me — all of the support that I could ever ask for — but I didn’t have myself. I felt so betrayed by my body, my fate, the universe.
I called my mom. “I need to get out of here.” “I know,” she said.
When I arrived in Birmingham, my mother later told me, I looked grey. My skin was sallow, my cheeks gaunt. I felt like a child who had been wandering through the woods, ragged, searching for a scrap of life. I had been declared cancer free by my doctor, but my grief continued to inhabit my body like a squatter.
Slowly, the days began to pass. The sunshine managed to penetrate the prism of darkness that I had been living in; the singing of the birds a reminder to be grateful for each moment of life. I started feeling dull pain in my abdomen — phantom cramps — some reminder of what I no longer had. I started to cry in my mother’s arms. It felt good to be hugged and held, to be assured that this too, would pass.
My dad began dragging me out of the house to his painting classes and would bribe me to do laundry in exchange for lunch. He sang to me and my mom each night with an entirely off-key acoustic guitar rendition of Edelweiss, Greensleeves or Happy Birthday.
Life after cancer. I hear this phrase a lot. I don’t know what that means. As if cancer ends and then life re-begins. As if it’s washed away like a cut or a bruise and then one just carries on as if nothing happened. Life is cancer. Life is sadness. Life is laughter. Life is gratitude, and joy and freedom. We do not leave cancer behind, but we are reborn, its burnt stamp forever a part of us.
I know from other friends and family who have lived through a cancer diagnosis, that it is something that changes you forever. It has the power to darkly veil a perfectly beautiful moment in utter sadness and despair; it also can unexpectedly paint a filter over the everyday mundane aspects of life — making them infinitely more wondrous than you ever could have imagined.
I walked into my painting class on Wednesday, set up my composition sketches and sat down to paint. I got up to retrieve a paper towel and glanced at myself in the mirror as I sat down. The woman I had become. She looked back at me. I was amazed how my cheeks had filled in, the color had returned to my face and I had a peacefulness in my brow that hadn’t been there for a long time. I looked beautiful.
I knew, in that instant, that I was on my way. Headlong into my rebirth, my rise from the ashes of cancer and loss.
And so I share my story.
Last Tuesday, I checked in at Mt. Sinai on the Upper East Side for surgery. I arrived at 9:30 am, and was beeped to fill out my paperwork by 10 – where I also charged $2500 ($1000 short of my yet un-met deductible) to my credit card. “Hope it goes through,” I joked. (I was told that if it didn’t go through, I would not be receiving the surgery).
I went into the hospital eating a steak a day, knowing that my blood count was low and I needed to build my blood up as much as possible so as to avoid a costly hospital stay that would be applied to my out of pocket maximum. I had learned – just days prior – that I was going to be at least several thousand dollars out of pocket once this was all said and done.
I have been a freelancer for the past year, and before that, I worked for a small business that required me to have my own insurance. Without many options in New York State, I opted for the Freeelancers Union, believing that I had a good plan with a progressive company.
Sure, my $35 and $55 copays for doctor visits were OK when I was healthy, but once I was faced with the daunting prospect of surgery, I suddenly realized that patient responsibility for 30% of costs AFTER my $3500 deductible was met meant I could be responsible for many thousands of dollars.
After several meltdowns, panicked phone calls to friends, and even threatening to not get the procedure, I decided that worst case scenario, I just couldn’t pay. I didn’t have a choice. Unless I wanted to stay in menopause forever (at $400 a shot mind you), not bear children, or continue to hemorrhage on a daily basis, I had to have the surgery.
I wouldn’t be alone, after all.
A study published in The American Journal of Medicine in 2009 found that more than 60 percent of people who go bankrupt are actually capsized by medical bills. In fact, bankruptcies due to medical bills increased by nearly 50 percent in a six-year period, from 46 percent in 2001 to 62 percent in 2007, and most of those who filed for bankruptcy were middle-class, well-educated homeowners.
Lead author Steffie Woolhandler, M.D., of the Harvard Medical School, concluded, “Unless you’re a Warren Buffett or Bill Gates, you’re one illness away from financial ruin in this country. If an illness is long enough and expensive enough, private insurance offers very little protection against medical bankruptcy, and that’s the major finding in our study.”
In total, the study found that 62.1 percent of the bankruptcies were medically related because the individuals either had more than $5,000 (or 10 percent of their pretax income) in medical bills, mortgaged their home to pay for medical bills, or lost significant income due to an illness. On average, medically bankrupt families had $17,943 in out-of-pocket expenses, including $26,971 for those who lacked insurance and $17,749 who had insurance at some point.
My surgery went well – with the doctor removing the fibroid, a uterine cyst and endometrial lesions. But I lost blood during the procedure, setting my hemoglobin levels to 5.9, and requiring a two-night hospital stay.
It’s strange receiving care for a serious illness and understanding that everything – every saline bag, blood pressure check, and doctor visit will be a charge, all tracked through the barcoded band on my wrist. The first night of my stay, my blood pressure was so low that I almost passed out twice. The second day, I was so sick from the morphine that the doctor told me that I should stay – I also needed additional observation for my dangerous anemia.
By day two, I grew accustomed to turning my wrist for an easy scan for every aspect of care that I received. With just my surgeon’s bill at $14,000 (not including the anesthesiologist and any other doctor present), and an estimated average hospital stay at around $3000 – $5000/night, I knew that I had probably hit my out of pocket max of $18000 – which only began accruing after I met my $3500 deductible.
I have been recovering for the past week, and have not received my bill for my stay yet. I can only cringe when I imagine how horrific that bill will be, and it makes me sick to think that filing for bankruptcy is a viable option at this point.
I have been thinking about the election, about the Republican stance that single payer health care is the solution, and that any aspect of socialized medicine is simply unthinkable. I have to believe that these people have never found themselves in my position, literally drowning in a sea of medical debt – even after paying for health insurance for years.
I don’t have a solution. But I know that there is no way the status quo is working. There has got to be another option.