The Burning Point of Life

Sailboat alone against dramatic sky

“Love is the burning point of life, and since all life is sorrowful, so is love. The stronger the love, the more the pain. Love itself is pain, you might say — the pain of being truly alive.”

Joseph Campbell, The Power of Myth

When I was 16 my English class read Joseph Cambpell’s The Power of Myth as part of our study of the Hero’s Journey. It was one of the most memorable moments in my education; I felt the curtain had been pulled back on culture, literature, religion, and life.

Ms. Kaney, our instructor on the subject, challenged us to relate our experiences to the epic myths we were studying, and to view literature through the lens of our own lives. She asked us to pull out our notebooks and begin to record our moments of extreme feeling. She said acute suffering and pure joy would draw the maps of our lives.

She deserves credit for tying the assignment back to our curriculum, but I think she mostly just gave us this task because she wasn’t sure what else to do with us. It was September 11th, 2001, and we were watching the towers collapse on a muted TV in the corner of the classroom. Per her recommendation, we opened notebooks and scribbled our impressions through tears and shaking hands.

This initial instance of recording pain as I felt it kicked off a lifelong habit; I’ve captured moments of crisis in detail for the subsequent 16 years. My diaries since have been records of the extreme highs and lows of my life, but still make for a pretty average story. They’re full of mundane disappointments and moderate successes — until we arrive at the first real challenge in my story, which is where we are now.

A field that is half green, half brown

Three weeks ago, my mom was diagnosed with Multiple Myeloma and Plasma Cell Leukemia.

In the unfolding since the diagnosis, certain mythical archetypes we studied in Ms. Kaney’s class keep popping into my mind like a playlist on repeat: the Fellowship of the Rings facing down the Balrog, Princess Leia watching the destruction of Alderaan, Perseus obtaining Medusa’s head against all odds.

One image in particular has stayed with me: Jesus’ followers at the foot of the cross. Raised to be Christian, I am spiritual but not religious – however, this quote from Anne Lammott’s Stitches has come back to me again and again:

“To heal, it seems we have to stand in the middle of the horror, at the foot of the cross, and wait out another’s suffering where that person can see us.”

This is one of the functions of myths; they offer symbols and a framework to describe the indescribable – the extraordinary challenges faced by every ordinary mortal. These stories teach us about what it means to be human; pain, hope, defeat and victory are universal and inescapable.

Beautiful clouds at sunrise

It’s dawn and I’m sitting with Mom in the hospital, hoping she’s finally sleeping deeply. We listened to a guided meditation and she gradually let go of the tension in her fists and forehead and deepened her breathing. I can’t join her though — every time her monitor alarms go off I am rigid and breathless. It turns out she’s just rolled over on her IV tubes again.

She looks so beautiful to me this morning that when the nurse comes in and turns on a soft light to gently detangle her wires, I almost take her picture. I am transfixed by her hair around her on the pillow, her presence so warm and real in this moment — it’s more breathtaking than anything I’ve seen.

I want to capture her one-of-a-kind my-mom-ness and find a way to share it with everyone. I can’t believe my luck, that I was born from her, that we keep each other company through our lives. When I am with her there’s little room for fear; I feel our love with clarity and purity I haven’t felt since childhood. When I leave her, the opposite side of the coin shows its face; I feel a new brand of desperation and heartache.

The nurse needs me to move, and I know I can’t photograph my mother asleep in bed — anyway, it wouldn’t help you to understand, I’m too poor a photographer. I think about artists who painted the Madonna over and over again, and wonder if this is what they were trying to tell us.

“The call of adventure is to a … place of strangely fluid and polymorphous beings, unimaginable torments, super human deeds, and impossible delight. The hero can go forth of his own volition to accomplish the adventure… or he may be carried or sent abroad by some benign or malignant agent.”

Week of February 20th

We fear my mom has uterine or ovarian cancer when she experiences post-menopausal bleeding. As part of the tests related to this concern, her doctor takes a blood sample, which reveals that she is very anemic. She is given a prescription for iron supplements.

I tease her about her love of nutrient-poor food. My dad tries to compel her to eat liver, and prepares hearty soups.

Week of February 27th

Her blood is tested again, and she is immediately sent to the emergency room. Her anemia is much, much worse.

They give her a blood transfusion; nobody can tell us why her own blood is misbehaving. I leave work rather than continue to grow hysterical in semi-private conference rooms while demanding updates from my dad.

They admit her overnight for observation and tests. Her calcium levels are too high, and they find blood in her stool. Despite googling an infinite combination of these symptoms, I do not arrive at a diagnosis. The word “cancer” is everywhere, but I cling to my phone, trying to manifest the text that says “she just needed an antacid, we are on our way home now.”

I vow that when she is released from the hospital, I will take her to one of the very un-hip all-inclusive-resort-spa vacation places she would love.

Dad calls to say her kidneys are in distress. He is calm, but there are barely detectable cracks in each word, and he is gasping slightly in the pauses. I begin booking my flight to Florida.

My boyfriend Andrew and I discuss logistics. “Should you come with me? What about the cats and work and money? Am I overreacting? Most likely Mom will be fine, this will be a small scare, soon forgotten. Most likely we’ll be hanging out at the beach and avoiding the coming snowstorm by Saturday.” I say this over and over and over again, louder and with more determination, attempting to shout down the fear.

Andrew’s calm response, “we are going, I am coming with you,” fills me with gratitude, as does my coworkers’ kind leniency as I book a pre-dawn one-way flight for the following day. The well-wishes and offers of cat-sitting from close friends gives reassurance that everything will be fine.

Friday, March 3rd

My baby brother Thomas picks us up at the airport. As we’re waiting for our suitcase to amble around the baggage carousel, Dad rings to tell Thomas to call out of his afternoon shift at work. He tells him not to stop for coffee or to drop our luggage at home; we need to come straight to the hospital.

Thomas can’t remember where he parked the car, and we sweep the garage with mounting desperation. We drive to the hospital at a barely safe speed, making strained conversation. For once I spare everyone the lecture on road safety.

A misty forest

We step through the door of her room and I breathe in the anguish in the air. I know immediately that I’ve crossed a threshold from my old life to a new one, one which includes a different type of pain I hadn’t previously felt. It’s the moment in the story when the clouds gather, the woods get dark, and the birds go silent. A shadow passes over us.

I look into my dad’s eyes and know I’m about to be hit with something I have never prepared for. I pull him in close, wanting to be protected. “Hi Daddy, everything’s alright, it’s okay right?” “No. Everything is not okay.”

I don’t remember this part as well. I hear “cancer in my blood, cancer in my bones, late stage, multiple myeloma” — I make her repeat this last term so many times, but still days later I can hardly remember it or say it out loud — “melanoma?” “no, MYeloma”. We hold hands and I look at her for so long. I’m aware of how long it’s been since I looked straight into her eyes without turning away.

I have a recurring image of pulling her into me, merging my body with hers, holding her within me the way she once carried me. I think if I could somehow shield her then this monster would not see her, and would come for me instead.

She whispers: “there’s so many things I want to see you do.” She looks at my boyfriend behind me, and I can’t see his face when she bursts out in choked bitter laughter: “look, don’t you want to just get married now, in a hospital room?”

Ants

I say we’re going to get some coffee in the downstairs cafeteria, but what we really do is stumble into the parking lot, blinded by the relentless Florida sun. I fall down in a patch of dirt (this is a recurring pattern in the days to follow, wanting to get down into the earth and stay there) and I let out a wail. It’s not nearly enough though, so I howl, I scream, I beg my boyfriend to kill me. I tell him if I would prefer to die, I say I will not accept this.

He holds me so sweetly, but he doesn’t know I wish to be crushed, annihilated. I imagine a nearby car rolling over my body, cracking my ribs open, obliterating the source of this pain in my chest. People walk by and stare. It turns out I collapsed into an ant pile, and we are slowly and purposefully being attacked. We get up, breathe, go back.

When he sees me my dad does not comfort me, but rather grips my face firmly by the chin with one hand and licks the thumb of his other hand. He roughly wipes the chunky mascara and crusty tear tracks from my cheeks. His calloused hands pressing hard into my face have the effect of a healer’s, and I am calm again.

I climb into bed next to my mom and kiss her hair. We talk about our cats, our new apartment, football, work, the lack of amenities on our flight down. We fill every crack with the pleasant chatter of our old visits.

Frothy waves

Mom has now left the hospital and is home, waiting in the quiet eye of the storm. We batten down the hatches and hold each other tight.

Her oncologist — a kind man with a dry sense of humor — assures us that while the cancer is incurable, remission and long life are possible through an aggressive course of treatment. He compares the cancer to the replicating Agent Smiths in one of the later Matrix movies, and says he is sending in Neo and a host of other heroic chemicals to help.

In the meantime, we try to find our footing on this new unsteady landscape.

I’ve been confronted with a choice: do I return to my life in New York, or stay and do what I can to help my family? Many do not have the option to stay or go, and I’m fortunate that I can choose where to devote myself. Still, it feels like an impossible decision, and it’s one I’ve struggled immensely to make. I want to be the best I can for everyone I care about — for my parents, brother, boyfriend, friends, colleagues, fellow humans. And I want to be the best I can for myself. But things will give; devoting myself to one path means not walking another, or at least taking a detour. And it’s best done without indulging in excessive doubt, self-pity, or shame. I am working on this last part.

Along those lines, today I resigned from my role as Creative Director at Hometeam. In doing so I’ve said goodbye to an amazing team, an engaging role, and a salary. I’m back in New York for a few days to clear my desk, kiss Andrew, and hug my cats and friends before returning to Florida.

A dark cave

“The cave you fear to enter holds the treasure you seek.”

Joseph Campbell, The Power of Myth

By leaving New York and taking up residence in my childhood bedroom, I’ve left the prestige, security, and illusion of certainty to which I’d grown accustomed. I’ve left the unfailing comfort of my devoted boyfriend. For now, my job is to pick up prescriptions every other day from the pharmacy. I sit helplessly just outside the chemo room and watch her grimace in discomfort. I put socks on, and take socks off. I offer smoothies and soups that often go uneaten. I fight with the insurance company. I pencil appointments into a large desk calendar. I try to make my parents laugh at least once every day. I miss my old life, but these mundane gestures of care feel more meaningful than any other work I’ve done.

Amongst the rage and terror of a cancer diagnosis, there are some surprising gifts too. There’s the deeper knowledge of the bond that my family and I share. I’m newly amazed at the strength of Andrew, and so humbled by his commitment to me. Our community of extended family, coworkers, friends, and acquaintances have offered tokens of care in the form of candy, flowers, hugs, kind notes, and prayers; every small gesture makes everything a bit more bearable, sometimes even beautiful.

“Light and dark respectively, together represent… the one goddess in two aspects, and their confrontation epitomizes the whole sense of the difficult road of trials. The hero, whether god or goddess, man or woman, the figure in a myth or the dreamer of a dream, discovers and assimilates his opposite… either by swallowing it or by being swallowed. One by one the resistances are broken. He must put aside his pride, his virtue, beauty and life, and bow or submit to the absolutely intolerable.”

Joseph Campbell, The Power of Myth

Before, perhaps without fully appreciating it, I navigated life with ease in the light. This fight is my mom’s, and I can’t really know what she is going through or control this experience. But I can be by her side along the way, even if I have to bow to the intolerable; I can sit at the foot of the cross, and believe in the resurrection.

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