If I were to claim any part of her as my favorite, it might be her hands. They dance when she is alert, fingers waving,coaxing the air into becoming her own invisible instrument. When she is startled they bunch up into tight fists and she gives them a shake or two. Often a finger or five can be found in her mouth, shiny with drool. Lately she has started to explore the opening and closing of her hands. She touches fabric or skin or anything really, and her little starfish fingers joyfully leap forward only to immediately spring back to nestle her palm again. Open close, open close. And sweetest gestures of all happen during nursing, as more frenzied activity slow to sweet caresses. She feeds quietly, eyes closed and gracefully, ever so gently traces her fingertips along the outside of my breast, my sternum, my chin. The very light touch of her fingers, so tiny, not yet hardened by life’s labor, feels more like a brushing of butterfly wings than the touch of a human, but here she is, real and mine. 6 months after her birth I still check her breathing while she sleeps. You are okay? You are okay.
Sometimes, I feel as if nothing I do matters. I have struggled and fought and I have failed. Oh, have I failed, in a million small ways, and in a few pretty large ways too. Some days I feel weak and worthless. But yesterday helped me see a bit clearer.
Yesterday, I attended a memorial service for a patient. Her name was Angie, and she died at 45 from breast cancer. The ceremony was held in a garden space, where a stand of trees stood proudly in the middle of barren desert. In this oasis we were sheltered us from the Arizona sun, still so unrelenting even in late September. Native voices and drumming sliced through the air, carrying our prayers of healing and sobs of grief high in to the heavens. We honored the four directions, the circle of life and all its infinite passages. We held hands, a rainbow of humans from all walks of life, touched by this one woman. Years of addiction had scarred the hearts of some, yet there, under the shade trees, there was healing and love and hope for all of us. We were united in grief, united in being alive.
In this sacred space, I received kind words of gratitude for the care I gave to this woman while she was alive. I felt her community honor me as a healer to the sick and a friend to their loved one. Her case worker and strongest supporter during the last year of her life presented me with a print of a dragonfly, a symbol not only of the community where she lived but as symbol of transformation, of rebirth. It was how Angie wanted to be remembered. She is now in the spirit of the dragonflies. She is liberated and omnipresent and I believe she is still here. In a way, her illness gave her the medicine to be everywhere and everything, to transform from a homeless crack addict to an inspiration, a visionary, a healer.
I felt some apprehension about attending the service, as it promised to crack open my own barely contained well of grief (which it did). And sometimes it is hard to accept gratitude. I want to cast aside the humble thanks of others and say “its only my job.” But it’s not “only my job.” It is a blessing and an honor and a calling. I couldn’t save Angie from cancer, nobody could. At times I couldn’t even lessen the pain. But I walked beside her, I was at the door of her final passage. I was a part of humanity’s best side, the wide embrace, the soothing words that call forth light in the darkness. I was part of an easing of her burden, part of her finding wholeness even while she was dying. I was part of a miracle.
We all know about the shadow side of our civilization. We slaughter, we rape, we decimate, we wreak havoc on the earth. Sometimes, I can’t bear being a human, can’t face being a tiny limb of the global curse. But yesterday, I felt honored to be alive, to be a person, to be a part of a community wider than my own mangled thoughts, my own voice pleading in the darkness.
A single wave is meaningless, yet the collective tide can carve canyons and move mountains.
I am honored to be part of this mysterious force.
I spend my days caring for people who are living with loss. Sometimes its the loss of an identity as a healthy person. Sometimes its the loss of a long life expectancy. Sometimes its the loss of a breast. The loss of estrogen. The loss of energy, vitality. The loss of long, sexy hair that trails to the small of a back. The loss of trust, the loss of a belief that everything will be okay.
I don’t know what it feels like to have breast cancer, and I didn’t know how it feels to be a mother to a dying child when I worked in pediatric bone marrow transplant, and I didn’t know how it feels to be a homeless, chemically dependent and mentally ill AIDS patient when I was a med-surg nurse in a county hospital. But life has a funny way making us let go, and let go, and let go some more, and after all this letting go we turn to other humans, who murmur yes, I understand what its like to see the most precious dreams fly away, I have felt the texture of the walls and the weight of the thick black air of a world of darkness, and I have come out on the other side. I have always enjoyed my patients, but I’m a different kind of nurse now. Its subtle, probably not noticeable. But there is a slight shift in the air, a longer gaze in which I say without words I can better understand you.
Sadly, loss breaks a few of us and there are casualties along the way, but more often than not, it simply destroys that which no longer fits. We need the heartbreak in order to open up more fully. And with this miracle of the human spirit we can then weave together the threads of our sorrows with those of others. We bond. We make a web of connection, and it captures the joy and blessings of this bizarre, difficult, beautiful world. The details of our individual suffering is always unique, but in the collective experience of loss, we turn to each other with a soft and courageous stare and say I may not know, but I understand.
One morning this week, I spied a woodpecker perched on a tree outside of the Cancer Center. Such athletic, flighty creatures, it seemed odd that he remained perfectly still, appraising me and the rest of the world around him with his unblinking eye. Only a few feet away, I stared back and sipped my tea and my bones started rattling deep, deep inside:
I don’t want to go to work!!
Its odd, I almost always walk through the doors of the Cancer Center with a smile on my face, eager to see patients and start my day. But its been a struggle lately. I’ve been tired, and working so very hard. The endless stream of emails, prior authorization requests, distraught patients, hospice talks, conflict between staff members, and ever mounting pile of unsigned notes are taking their toll.
Or is it something more internal that caused me to be frozen under cloudy sky, unable to walk through the Cancer Center door? I haven’t been taking care of myself as well as I could, but its not all been miserable either- I have been eating pretty well, and taking my dear dog for runs in the dark November mornings.
And then there are the anniversaries that quietly haunt me. The anniversary of the day I napped next to my mother and noticed she was breathing differently. It was so subtle, it escapes description. But I knew something was different. And she smelled different too- not bad, just ever so slightly different. The dying process started with a whisper on November 13th, 2011.
And then on November 14th, I got the call at 6 in the morning that she was hospitalized with a bowel obstruction, and in a matter of minutes I was barreling down the highway again in my Corolla, headed to Phoenix and biting my nails I could make it there in time. Turns out, we had quite a bit more time: almost a month.
Then there was the cascade of events and phone calls and praying and weeping in lobbies that lead her to be sent home on November 15th with hospice care. It felt so right and so wrong and so unbelievable, a dream and a nightmare.
Life had a singular focus: my mother. There was no room for the stuff that doesn’t matter, like work stresses. There also wasn’t room for a lot of stuff that does matter.
So, this year I’m doing well. I smile a lot, and even have started worried about some of the small stuff again. But this year, on November 14th, I struggled to go to work. I stood outside of the clinic under a grey sky, longing to stay still and sip tea and stare at beautiful birds. I had little to offer to the patients waiting for me, but I gave them what I could. I needed not to give, but to receive.
It wasn’t an easy day for me. But perhaps the universe understood my plight, because when I came home there were two packages waiting for me: dried corn from my mom’s dear friend, and a book from my dear sister.
I don’t always get what I want, but sometimes I get what I need.
The epiphany occurred when I was 19 years old. It was a spring day. I was working at an abortion clinic, my part-time college job, answering phones and working the front desk on Saturday mornings and on Tuesday and Thursdays after class.
I secured this job through my mother’s connections with the pro-choice movement. The clinic manager had been a student intern in 1984-85 for my mother when she was the director of the Abortion Rights Council. When I interviewed for the job, the manager showed me a framed picture I drew her when I was 4 years old. It was a typical child’s drawing: hearts, people with large bug eyes, except it also had a phrase written in my childish scrawl “I cannot live without birth control!” Unsurprisingly, I got the job. Yes, I needed to walk through protesters to go to work, but I felt like they made the day more interesting . Plus I made 11 bucks an hour, far more than my peers did at their jobs in the campus library or cafeteria.
One particular Saturday morning in the springtime, the clinic was short staffed in the back. I was plucked to help out. In a five minute crash course, I was taught how to take a blood pressure, how to coach a woman to breathe and relax, and how to ready the procedure room in between patients.
I pulled the chart of a girl who was a year ahead of me at the private Catholic women’s college we both attended. I called her Scandinavian name in the waiting room, and led her back to the small room under fluorescent glare. I told her to undress from the waist down and gave her a paper gown that crinkled as she moved. I squeezed her thin arm with a blood pressure cuff and guided her feet into the stirrups. She laid back on the vinyl exam table, and her long blond hair spilled around her, creating a halo.
“Where do you go to school?” she asked. Maybe she had an idea that we had something in common. I hesitated in my answer, not wanting to make her feel any more uncomfortable than she already was. The suction machine groaned as she became un-pregnant. Her polished nails gripped my hand.
“St. Kate’s” I murmured.
She flashed a radiant smile between the uterine cramps. She was beautiful, tall and blonde, with straight white teeth. “Me too!”
She had sorority-girl beauty, and I was a bohemian with a nose ring. She was unhappily pregnant, I was making a few dollars to put towards rent on a ground floor apartment that was so close to the train tracks it would shake all night from passing freight cars. But there it was– two young women, holding each other’s hand, connected in a way that exists beyond words or explanation.
Five minutes later, it was over. She was shuffled off to the recovery room, and I was wiping away the blood that was left behind. The Sklar disinfectant spray made my eyes water. And in that moment, wiping down an exam table under the flourescent lights, it was clear to me. I needed to be a nurse.
The realization was sudden, and my hand started to shake. I thought I was going to be a music teacher. I had saved every penny for a concert harp, practiced for hours alone while my friends were out drinking. But there was no turning back. I had already experienced my first moment of nursing, and that was it.
I mulled over my secret for a few days, but then told my mother I was changing my major from music to nursing. She told me that she wasn’t surprised, it made total sense to the woman who knew me so well.
And then I called the young man I loved fiercely, but it was an obsessive love that delivered equal amounts of magic and misery. So we couldn’t stay together, and we couldn’t stay apart, and we danced back and forth like this for two years. At the time he was living in a different state, but we were making plans to be together again in the future.
I told him my new plans and he sneered. To be fair, this major change would require another year at college (and another year away from him). But he didn’t understand what was in my heart. He made some sarcastic comments, which gutted me. And it was over in that moment. I didn’t quite know it then- our impossible dance continued for a few more months, perhaps. But I found my calling, and I never forgot that in the moment he wasn’t there, couldn’t be there.
I needed to be a nurse. It was worth walking away from love, from my plans, from a life I had mapped out for myself.
And I followed through.
Even though my job is difficult, it is as much a part of me as my right arm. It has changed everything: how I think about life, how I spent the last moments with my mother before her death. I am a nurse, and I am more than a nurse, yes, but I can never not be a nurse. It sounds terrifying to have a job as such as integral part of an identity, but its not really a job, now is it?
It is a calling.
We are a team
Are we on the same team?
The thing is, I’m tired
And there are so many of you
There are too many of you
You’ll be okay
But I want to live!
I pray you’ll be okay
This must be what it feels like to die
Can a person really save someone else?
A single thread slipping through my fingers
A giant chessboard, smooth beneath a mysterious hand
So easy to float away
Pawns of fate, so helpless
But fate or not, I make my move
I hold on tight
We plunge ahead
Eyes wide with fear and wonder
Madness and courage
Fear and wonder
Some days, being a nurse in oncology exhausts me to the core.
No, I don’t know if you will puke, if you will have diarrhea, if you’ll get an infection. I don’t know if your cancer will come back, if your tumor is bigger, if the chemo is working, if the cancer is in your liver, your bones, your brain. I don’t know if you’ll live to get married, or to see the ocean again, if you’ll be able to have a baby, if you’ll see your grandchild graduate high school. If you’ll bury your spouse, or if your spouse will bury you. I don’t know if you’ll die in 6 months, 12 months, 12 years.
Clearly, I don’t know much.
But in this tiring day in clinic, I had the blessing of caring for a patient who has been through every permutation of chemotherapy known to (wo)man for breast cancer, who looked me straight in the eye and said:
I know I’m going to die. But I’m going to enjoy the life that I have, however long that is.
She meant it. She’s ready for the inevitable, but she’s grounded in the present.
We are so busy making plans for a future that may or may not come. We grind away at jobs in order to get rewards down the road, we delay the telephone calls, the new dress, the vacation. I’m not saying that planning ahead is a bad thing, but it must be tempered with a grounding energy and a dedication to this very moment:
Take a breath. Feel your chair beneath your body, the ridges on your keyboard. This is all there is, right now.
So own it.
This would have been my dear friend’s 33rd birthday. But she never lived to see 18.
Her name was Kirsten. We met in 9th grade math class. We started smiling at each other before either of us were brave enough to speak a word, and from the first hello we were friends. She was tall, lanky, wore her long brown hair in two swirled buns at the side of her head, and dressed a little bit like Janis Joplin in flowing, mismatched layers from the thrift store. She had a deep, throaty voice that somehow would rise above the din of a high school class.
She was a poet. She played viola. She loved the Beatles, Tracey Chapman, and the Mammas and the Pappas. She loved animals, and like me she became a vegetarian at 10 but unlike me she stuck with it. She spoke her truth even if it made others feel uncomfortable. She would come at you in a flurry of skinny arms and legs and wrap you in the biggest hug you’d ever experienced, pressing her warm cheek into yours.
She was special.
My favorite memories of her were from our time at her family’s cabin, outside of Bemidji, MN. Minnesotans usually visit cabins during the summer, but for some reason I only went with her during the wintertime. We gathered water through a small hole in the frozen lake, gathered pieces of birch bark on which to write poems and letters. We marched through the silent, snowy woods on snowshoes, singing songs and laughing.
I walked beside her after her father died when she was only 16. Her family mourned with a three-day vigil in their home. Their anthroposophic beliefs taught that the soul left the body slowly, over a three-day period. He was not embalmed. His wife, Kirsten’s mother, with the help of her dearest friends washed the body and kept him in a wooden coffin on dry ice, which smoked slightly in the summer humidity.
I came to the vigil gripping a container of tabbouleh to share with other mourners. I held my friend’s hand as she saw her father for the first time since his death. He looked as if he was taking a very relaxing nap. We burned incense and listened to music. I didn’t know then what it was like to lose a parent, but it seemed profoundly wrong that this brilliant, sunny individual should plunge into a world of pain. But she was a survivor. She became even more creative and productive after his death, filling her journals with poems and pictures that helped her process her loss. I didn’t know it at the time, but she was modeling for me how to grieve. In only a year and some months, I too would learn what it was like to lose someone I loved.
She died at 17, on a two lane road in upstate New York. The car she was driving hit a patch of ice, and slid in front of a semi trailer. She died instantly, along with her best friend since childhood. Her lovely mother was gravely injured in the crash, but her body recovered after many weeks in the hospital.
When she died, I was at a Thanksgiving family gathering in Virginia. The night of the accident I dreamed that she and her mother got into a small car and drove away. I fell to my knees, devastated I never had the chance to say goodbye. It was 1996, before everyone was connected by the Internet, so I didn’t find out that she had passed away for a few days.
Her death gutted me. At an age of adolescent invincibility, I learned how life can be snatched from you in a terrible instant. I felt estranged from those that I loved and struggled to find meaning in the unimaginable, unexplainable. Like Kirsten, I filled notebooks with poems. It helped.
There are moments when life changes fundamentally, and that cold day in November, 1996 inexorably altered me. I grew greatly from her friendship while she was alive, but it was her death that altered the course of my life. In only a few short years, while I was still a teenager I had a part-time job holding the hands of women who were losing their pregnancies. From that point on, my work has been the service of those who are experiencing, or have experienced loss. And I needed to know loss in order to serve others experiencing loss. Losing my beloved friend was the first step in meeting my destiny.
I wish Kirsten was still alive. The world would be a better place for it. Yet on this birthday, I am both grateful for the gifts of her life and the gifts of her death.
I am not a girl who was blessed with the gift of faith. I fully embraced my secular family member’s values of critical reasoning from childhood. And in many aspects of life, it helps to not place too much stock in what you believe to be true. It may well be completely false.
But losing my moms taught me how to embrace faith. I am changed now, and I understand how faith can be as important as the air we breathe.
Part of me still rebels against the very idea of faith. Despite the fact that my most brilliant family members include devout Christians, I long attributed faith as something embraced by those less-intelligent than myself. Bad things happen, why dance around like everything will be okay? Don’t believe that a God will make it all better– he/she probably won’t.
I grew up and became a nurse. The optimism of doctors in oncology was particularly annoying. Whatever, this patient is going to kick the bucket, why not face the music and get them go to hospice? Maybe it made me feel superior, feeling like I could predict life and death. The thing is, sometimes those patients did survive. Or they walked out of the hospital. Or they lived long enough to clap and laugh at their child’s birthday. Miracles happened, and sometimes I was too busy rolling my eyes to notice.
Mom, she had faith. Deep into her illness, she still believed she would get a bone marrow transplant and achieve that long-sought remission. Or at least, that’s what she told me. Who knows what is in another’s heart? It drove a wedge between us, because I believed she would die only a few months after she started chemo. She will die, she will die, she will die. It was all I could think about.
And she did die. But unfortunately, we didn’t bridge that gap between her faith and my obsession. In a certain way, we were estranged during the last year of her life. I did the best I could do in a painful and heartbreaking situation, but I still wish that things were different.
With my patients I’m not crippled by fear. I find myself saying so much more often you will do this, and its going to work. You’ll do very well. This cancer will be beat. I can’t predict that my patients will survive any more than I can predict that I will survive. But hope is everything. I wasn’t able to embrace hope with my mom because I was too fearful. But if we only have today, this present moment, this now, why not be optimistic? Why not count on the very best?
In the end, we can’t fight what will and will not be. The cosmic die are cast, and are tumbling towards destiny. We don’t know what is ahead of us tomorrow. So why not embrace the light, count on the miracle, expect the very best? The present moment is all we have. Believing in a bright tomorrow helps one relax a bit, don’t you think? The energy we spend dwelling over the certain destruction ahead can be better spend enjoying the sun, the smile of a loved one, the wagging tail of a dog.
The monsoon has come to the desert, and we have spent this 4th of July doused by the rains. I raise my face to the sky, embrace the drops stinging my face, and join the chorus in faith that these showers will transform the sterile, dusty earth to a green paradise, full of life.
Here I go, breaking my rules again… (the one about not writing about work)
Its been a hard few weeks at the office. Even though I feel I’m divinely suited for this job (nurse practitioner in oncology), sometimes its overwhelming, and I think maybe life working in urgent care or a weight loss clinic wouldn’t be so bad. This last month has been full of disease progression, hospice discharges, and death. People I have grown to love, struggling with pain, dying too young.
My years of working in bone marrow transplant taught me a certain brand of detachment– how to stay rooted in the present and not be attached to a future for the human beings in front of me. It was a powerful lesson in letting go; I couldn’t look into the eyes of children with high risk leukemia day after day and worry about what was awaiting them next month or next year– it was unlikely to be a healthy, normal childhood. I had to care for and advocate for my patients, do the very best job possible every day, but turn over the outcomes and what would happen tomorrow to the universe, God, Buddha, Mother Mary, physicians, someone or something else other than myself. Because there are patients that will die despite a favorable prognosis and everyone doing the right thing, and there are patients that will somehow fight their way out of the grip of death and against all odds, survive. You never quite know in this business.
My patients these days are healthier and many of them are cured. Even the women with aggressive, metastatic disease usually live years rather than months. I see them week after week, month after month, and I grow very fond of them. We laugh together, we hug, we share photos and stories, I meet their best friends and relatives. Its hard to say goodbye after such a long relationship. I thought I was getting better at this but now I’m not so sure. My loss of my mother has made me more sensitive to what the families are going through. As I work through my own grief I can feel what the surviving loved ones are experiencing. It hurts. I also see my mother in some of these patients and feel as helpless as I did to fix things during her illness. I sit in the exam rooms with my dying patients and look down at my empty, searching hands.
And yet perspective is everything. I am greeted with success stories every day. These women plunged down the rabbit hole of cancer treatment and emerged on the other side, bathed in sunlight. As elusive as those rogue cells can be, resorting to every dirty trick in the book, sometimes cancer is completely slaughtered with the arsenal of treatment. It happens. An everyday miracle. A billion cells, a million microscopic explosions in the battlefield of the body. Victory down to the smallest unit of life.
Even when the war cannot be won, the enemy is usually held at bay for a while. Mom’s cancer was very drug resistant, but I still think chemo bought her time. Important time. If she were here, I think she’d say that the nausea and the hair loss and the fatigue was worth it for her.
So, what I do weighs on me sometimes. But it matters. I can’t forget that.