“There is love enough in this world for everybody, if people will just look.”—Kurt Vonnegut

Meet the BRCA1 gene in her 1950’s, chartreuse housedress. She adjusts her eye glasses on either side, like a prim librarian. She seems smug and maybe a little intrusive as she moves through my social media feed, intent on reprimanding any loud or loitering patrons. She might, very well, find a few of those among my friends. The BRC2 character seems more jovial, dressed in sky blue and pictured only from the waist-up—as if her expressive face holds more weight than the rest of her. She wears a striped tie around her neck, a seeming flight attendant directing attention to the card tucked in the seat in front of you.  

It’s hard to know whether it was my spinning head or the idea of someone personifying cancer genes (as advertising strategy) that creates my aversion toward all things technological. Lying in my bed, wrapped in sweaty sheets—the summer sun streaming in—I imagine a time when the ubiquity of smart-phones and all that accompany them becomes obsolete. 

Across the globe, as if choreographed in a dance, all of humanity will raise their heads in unison. Billions of hearts will swell at the depth and breadth of what has been missed. An expanse of electromagnetic energy will fall away and sink down into the earth where we are free of it, even as our breath recovers its rhythm with the rise and fall of the tides. 

I lay my head down on the reclaimed-wood, dining room table.

A decade ago, when we discovered this handcrafted piece was created from the remains of an old boathouse from our new town, we made what felt like an exorbitant purchase. The sales woman reached her hand into her pocket and threw a set of keys on the table top to demonstrate its ability to withstand scratching. This seemingly decorative piece has been the epicenter of our home ever since. We’ve shared countless pots of soup here and wrestled with weighty decisions well into the night. I’ve begged my children to use their manners between these four, sturdy legs. We’ve expressed gratitude before eating, all while Jonah and Adrian sneak spaghetti noodles, their heads tossed back, grinning like Cheshire cats. For one long stretch, Adrian seemed capable only of sitting on top of the table instead of on the bench that accompanies it. We’ve shared this table with games and crafts and puzzles that have at times come very close to inching us out completely.

My friend leaves me there and rushes home. I imagine her driving along steep and winding roads at a fast clip, intent on relieving my suffering. She returns with a tall, orange container filled with pills wrapped in silver packaging. I separate a couple capsules at the perforated edges and think about how despite our shared place in the same ditch, here she is shoveling me out. Later, the on-call doctor encourages me to take her medicine, and I marvel at the malleability of rules when compassion and desperation are at play.

In the morning when the ground is damp and while my husband still sleeps, I rise slowly out of bed, collecting my pillow as I walk to our balcony door. Outside, my bare feet get wet on the wooden surface. I hold my pillow over the side of the railing and carefully dust-off the large collection of hairs that have fallen in the night. Remembering my mother—brushing our childhood dog and releasing blond fur into the air—I imagine what she used to suggest, that birds might build a nest with my hair. 

At first, the strands are long. Eventually, as if going on a date, my husband and I drive to a barber shop in a neighboring town. I explain my situation and tears come springing to my eyes as I describe the sudden urgency I feel. The owner of the shop envelops me in a hug, skips me ahead in the line and walks me straight over to a chair. I collect my emotions as a stylist with rainbow-dyed hair and a pregnant belly turns me away from the mirror and begins removing what has become a burden. 

In the end they insist no charge, and we all wipe at our damp eyes. In a world replete with division, real-life, human connection evokes a deepened sense of what is means to see and to be seen—a reminder that all of us exist with some struggle or another.

These moments are arresting to my sense of self and they mean something. To stroll around with your current-life-challenges so readily available for others to witness evokes immense vulnerability. To navigate a road back to health in a world brimming with information—yet absent of absolutes—is humbling. 

When so much is at stake, who do you listen to?

At home, I joke with Jonah and Adrian about my resemblance to G.I. Jane. I’m not sure they understand the reference, but they assure me that in their eyes, my beauty remains intact. My buzz-cut eases them into a time when even those littler hairs will fall away and Adrian’s eyes will grow wide and dilate when I take off my hat in the evening and he looks intently at my ivory scalp. In the mornings, I dust off those little hairs on the balcony, too. I dry my feet on the thick, powder-blue rug beside the bed, hoping not to cause a stain.

When my fever sneaks up to the place where even the doctors are rattled, I surrender my children to sleep under the stars with friends. Their care is (perhaps, for the very first time) beyond my capability. I’ve lost what seems like all authority over my own well-being (much less theirs) and have been told I must go to a place brimming with germs. 

It is unimaginable to me that I can leave my bed, much less our home. 

They keep us in a pediatric room in the ER overnight with a glass door painted with storybook characters. Winnie-the-Pooh or Eeeyore were there, or maybe those were painted on the doors across the hall. 

A few days later, in my room on the 5thfloor, there is a knock at the door. I am out of bed and sitting by a window across the room. The large frame of glass allows swaths of light to come pouring in and provides a long view of an old, red-brick tower. The expanse of sky is as good a medicine as the fluids dripping through my veins. 

The man at the door is dressed like a professor with an unexpected, colorful tie hinting at something more. Somewhere in my paperwork I am listed as a Catholic and the visitor has come from the Catholic Diocese of Portland, Maine to offer his support. In a gentle voice he explains how for twenty years he was a lapsed Catholic, returned to the church through service work. With eyes that hint at both humor and pain, he assures me that my current, religious status is irrelevant to his visit. 

There is space in the way he is speaking to me, in the way he is listening. He allows room for my experience, whatever it might be.  

It is rare for me to accept this sort of offering. So often, I choose to serve as my own council. I turn inward, not in collapse, but toward an expansive world I count on for guidance and support. I turn to those who have gone before me, sinking my hand into the soft palm of my Grandfather who called me Meghan Baby and taught me to Waltz. I whisper a request for help to my Aunt Peggy who wrote You be You in a card to me when I was ten.

Maybe I reached a point in which I needed more than I’ve needed before. Maybe it was the unique nature of the space we inhabited. Or, maybe he was someone special. Whatever the reason, I began sharing with him about what it feels like to listen to the hollow sound of a basketball rebounding on pavement outside my window as I lay in bed on another beautiful, summer’s day. I relay the painful story I have been telling myself about Jonah bouncing a ball, outside alone, in juxtaposition with our endless beach days shared in summers past.

Along with my story of surrender, I release a slew of tears. His objectivity is enhanced by the absence of knowing me. I could be any mother. I could be any woman. He expresses his belief that my experience is an opportunity for Jonah and Adrian to deepen their capacity for compassion. I tell him how much I have not wanted them to worry and he insists there is good to be found in their service of me. 

On one of the darker of the sunny days, when discomfort had become like second skin, I remember contemplating the nature of suffering as a means of coping. I thought about the people—the children, especially—within this vast world who are trapped in experiences of relentless anguish. Their lives inextricably linked at birth with poverty, violence and inequity with no viable escape and no end in sight. I felt fortunate when considering the differences between our fates as well as sorrow for the injustice that allows anyone to be left to a life of pain. 

Witnessing suffering can leave us feeling powerless—as if our efforts to make an impact are only tiny drops of water in an enormous bucket in need of filling.  

My sister asked, where are the greater forces of good in all of this? She followed up with her hope—one that I share. The power greater than us reveals itself in the way it moves through us. It is present in us, as individuals, in the way we decide to engage the world. It is the witnesses who travels to the border and reports back. It is the zucchini and lentils brought by the angel friend up North—her most nourishing of foods. The healer who shows you how to open up your heart, just a little more. 

It is you and me getting to choose on any, single day who we want to be.

In the last few weeks I’ve rediscovered my equilibrium and found my footing again. I’ve   awakened early and walked outside in bare feet through damp grass to cut kale from my garden. I’ve bundled up in a yellow, rain jacket and traipsed through the woods with my friend. We compare notes about our skepticism that we might need to succumb to a supposed new and lesser normal. I assure us both—we do not have to subscribe to this notion.

Jonah and Adrian have gone back to a school where most children spent the summer at nourishing camps and exploring our gorgeous state. Instead of running back to my work I have been obsessing about food—pea shoots and arugula and home-grown tomatoes that thrived despite the plentiful weeds surrounding them. It seems as if I’ve returned from a difficult dive into the dark and murky depths of the ocean’s floor and I am rising once again to the surface, where oxygen is plentiful and my heart is ready to live.

“Women are going to form a chain, a greater sisterhood than the world has ever known.” ― Nellie McClung

An ultrasound room seems an odd place to find joy. I would not go looking for it there. The place where tissue is extracted and examined for cells gone-rogue has qualities antithetical to human-magic. Cold and sticky gel is rubbed across bare skin while danger lurks on a glowing screen. Places you loved before are suddenly deemed suspect.  

As the technician led me down the hallway, I noticed the way her wavy hair was cut in a subtle, angular manner so when it draped down her back it fell into a V-shape. I didn’t know at the time it was likely a fresh cut for her wedding in Vermont the weekend before. She showed me where I could put my bag, overflowing with a heavy book and multiple other weighty items. I thought about how later I would be told I shouldn’t pick up anything heavier than a milk carton. I would carry my belongings out like a bag of groceries, not slung over my shoulder, as usual. Bending forward, I unzipped my mud-splattered boots and climbed onto the table imagining the experience might be restful. A rare luxury to lie-down, mid-day, in a dimly lit room. 

I was ill-prepared for the first biopsy, afterward canceling a full-day of activities, so I could crawl into bed with an ice pack. I rely heavily on a high pain-threshold and a can-do attitude to get through things I might do better to prepare for. I had not considered the signals my body would receive having three of these same procedures back-to-back. My sister described how my immune system might go on alert imagining it was under attack with each removal of a valuable part. 

What I was in-for started to become more-clear as the ultrasound wand was pressed down forcefully on my bare chest in the same bruised area where I’d had the previous excision. My arm, raised in an L-shape above my head, began shooting pins and needles into my hand even before we had begun.

The technician apologized for being silent for a long stretch as she mapped out the red and blue landscape of my inner world reflected like a military radar screen to my right. She lined up the suspicious locations of density like targets. l told her I welcomed the quiet. Her presence felt immediately familiar in the way of an old friend. Of the five women who would occupy the room, she seemed the most like a sister and in the days to come I would think of her. 

I heard an assistant come in and when I turned to look, I recognized the back of her frame as she quickly dove into her preparations. Her fuchsia scrubs were the only notable color in the room, and brightened the space, like a bouquet. When she finally turned toward me, her hair swung around at her chin. Her face reacted with happy recognition. 

I thought it might be you! 

I filled her in on the results from my previous test and watched as the space between her eyebrows contracted with concern. This has become a familiar facial expression in the people I share my experience with. Then she brightened, doling out affirmations of hope, like candy.

I couldn’t say her age, she wasn’t likely all that much older than me, but she brought the mother energy into the room. From beginning to end she filled up a halo of comfort around me with endless offerings of support. Her presence was like a siphon, keeping me fueled and abreast (no pun intended) of what was happening. She left the room to find a warmer, softer blanket, better, she thought, than what had already been draped over me. 

The radiologist came in like a force of nature, with a resident in her wake. She made a comment about how the doctor with her was fortunate to be on her service in a room full of women. We all laughed as she quickly pardoned herself, affirming the many capable men working in the hospital.

We were acquainted from the previous biopsy and she greeted me warmly then quickly switched gears, detailing her plan to the others. She was like a sergeant barking out orders, only kinder and with an upbeat energy. There was a lot to be accomplished. She had a commanding voice and presence I might have once found off-putting. I might have read her as brash or overconfident. I understand better now about what it takes. I understand about how many ways women have been taught to shrink and to be quiet, to dim what allows us to make a needed contribution in a flailing world. I could recognize in her the many layers that must exist in order to demonstrate so much skill under the weight of responsibility with alternating humor and seriousness. 

The sound of a breast biopsy is exactly like the sound an ear-piercing gun makes when penetrating cartilage. It’s like a hole puncher making its way through a stiff sponge. I began bracing myself for the sound as everyone in the room lined up images on two screens with the reality of what was going on inside my chest. The last time I was there, the radiologist suggested I look away when she began inserting numbing needles into my breast tissue. This time, I closed my eyes without her prompting. I began concentrating on my breath, dropping my awareness down into my belly, softening and gripping simultaneously. 

The assistant came around by my head and propped a pillow under my arm and then took my hand in hers as the procedure got under way. Chatter began about weddings and stinky, boy children—several of us had a couple of those—and honeymoons filled with reading and sleeping late. We laughed more than you might expect given the circumstances but there was always a pause and a sense of sacred space being held in each moment when the real work was undertaken. I could feel a force of goodwill building in the room, like oxygen was being pumped in.   

Each biopsy target required multiple shots for numbing that felt like exaggerated bee stings, and then one long needle inserted deeply into hard to access locations in my breast. I steadied myself for the pressure of the reach and turned in my mind to the energy of friends who promised to be with me from afar. I experienced a sense of them, as if they hovered over me. Their personalities fell away in my mind and I knew them in the backdrop of their being. 

With the numbing agent, you can’t really know for certain whether it has fully-deadened the area in question until the contraction of the biopsy tool is made. After each compression, the radiologist questioned me, Are you ok? You doing ok?

She said she could hear my heart beating. I assured her I was okay.

At one-point trouble-shooting was necessary. The resident sat at a computer across the room, meticulously considering the best course of action based on the imagery from a previous test. Peering through horn-rimmed glasses she contributed her opinion and then stepped back to observe. We celebrated between biopsies and the bed was turned around multiple times for better access. Each time I was spun around, it was as if a slate was being wiped clean or like I was being let up for air. Everyone seemed to take that moment to breathe again and I realized each of these women were every bit as much invested in the experience as I was. 

I watched as the clock ticked closer and closer to school pick-up time and when I was finally finished the relief was palpable. I was ready to jump out of the bed and leave but my mother-for-the-afternoon encouraged me to move slowly. She helped me to sit up and saw I had water in my bag, encouraging me to drink. She wanted to know my plan for the evening. I didn’t tell her my husband would be working late. I told her, instead, a friend had brought food. 

Afterward, I felt elated. It was more than the adrenaline surging through my body. Even as I had experienced extreme discomfort, I felt as if I had also been held for many hours in a gentle womb by a group of women who knew their job extended well-beyond the technical aspect for which they were each responsible.

Walking into the damp, Maine air, I made my way to my car and just as I was getting in, I suddenly made a connection. I thought about joy and instances that elicit this human-magic, this fleeting knowing that all is right in the world. I realized that whenever there is love, there can be joy. These two qualities are inextricably bound. It doesn’t matter if it is a bleak time. It doesn’t matter if you and your friend—a woman of grit and dogged humility—both have cancer. Whatever the circumstances, love is the gateway to the very highest realm of experiences we may have as a species.

In the aftermath, my chest turned all shades of grape-purple and yellowish-green. Waiting for the biopsy results was grueling. I’m not a worrier at heart, but I ruminated plenty in this instance. Positive results would likely have changed my plan for treatment significantly. Bursting into the room, my surgeon spilled out the good news. When we discussed next steps, I somehow managed to simultaneously admire her stylish, strappy heels (at a time like this!) and when she hugged me, in the uniquely, warm way she does, I knew I was in good hands. 

“There is only one happiness in this life, to love and be loved.”—George Sand

Given my record of a too-full inbox and a seemingly ravenous spam folder, it feels like a small miracle that I received the message at all.

I had missed the CNN story that had gone viral and so the title of the message, Cards for Jacob, might have come across as unimportant or like more noise from a world so filled with communication.

I had recently approached the Children’s Museum & Theatre of Maine about a collaboration having to do with the Free-to-Play Project—a collection of my work meant to draw attention to the inherent value—and birthright—of children’s access to and freedom to play in childhood.

We had engaged in promising conversations about sharing my work—ultimately thwarted by my lack of status as a non-profit entity.

It didn’t matter that my mission and desire were to donate funding to their programming.

They were bound by rules and as disappointed as I was.

Despite my frustration with the red tape, I decided to donate half of the profits from a recent commission to the museum scholarship program anyway. The contribution would support seven families offering unlimited access to engaging play for one year.

It felt like the right thing to do in the moment and later I realized it was instrumental in connecting me to Jacob.

When we are open to it—and maybe even when we are not—it seems there is an invisible web of connection that extends beyond the known parameters of this life safeguarding our path to evolution and our purpose in being here.

I like to think Jacob somehow ensured I got the message because he knew this work was for me.

Imagine the power of a small and earnest request invoking a ripple across the globe—from New York to Australia to Dubai—causing hundreds of thousands of people to be stopped in their tracks and to respond.

This was the power of a small, 9-year-old boy whose nose wrinkled at its ridge when he smiled.

His name was Jacob Thompson and his request was simple and from the heart.

In the last weeks of his life—rendered short by terminal neuroblastoma that he had been fighting for four years—he shared from his bed at Maine Medical Center that he would like to receive Christmas cards from anyone who might like to send them his way.

His wish was to celebrate early a holiday he would likely never experience again.

As an aside, he noted how much he loved penguins.

The response took everyone by surprise and was so overwhelming the Portland Postmaster General became involved and began keeping track of the number of cards that were pouring in like an overflow of winnings from a slot machine.

A storage facility was rented to house the incredible influx of mail and Jacob’s family found a purpose—opening and reading cards with and eventually for Jacob—during an extremely painful time.

A few weeks after receiving the e-mail, I found myself driving to a part of a nearby town I had never been to.

It was a cold and sparkling morning just after the New Year and a heavy downfall of snow.

Surrounded by beautiful forests, I could have been driving across the scene of a quintessential Christmas card which seemed remarkable, given the circumstances.

I had been invited to view some of the hundreds-of-thousands of cards Jacob had received before he passed away and to consider whether I might be able to create a work of art with them given my experience working with repurposed materials.

Jacob’s family had been referred to me by an administrator at the children’s museum—the purpose of my experience there clear to me now.

As I drove to the meeting it felt as if I was following a thread connecting me to the next, relevant point in a geometric pin and thread art formation that constructs the pattern of a life.

A cousin of Jacob’s mother came outside into the brisk air and bright morning to meet me.

She wanted to ensure that I entered a certain door in the house so as not to have to navigate the snowier pathway.

She had put her dogs away so they wouldn’t bother me.

I could hear them barking and bouncing around on the wood floors—they sounded big.

Having just said goodbye to my own beloved cat, Autumn, I was eager to meet them and said so.

Sarah and I had an instant connection. There was an ease between us that went beyond our few moments of knowing one another.

It was clear we spoke the same language about life and loss from the start.

She brought out several long, plastic, post-office containers filled with piles of cards that had been sent to Jacob.

She told me about him, too— who he had been, his family and their incredible strength.

Together we poured through the cards—stopping occasionally together in awe of the idea that so many individuals had hearts to hear a young child’s request; to set aside the concerns of their own lives and find the time to reach out to him.

In these hurried and divisive times this occurrence seems miraculous.

At first, I was unsure how I would work with the materials—many of the cards were hand-made out of construction paper.

The current medium I work in—repurposed wall-calendars—provides glossier paper of a heavier weight.

Later I would have the opportunity to see and bring home many—thousands—of store-bought cards and begin to envision a work that would in some way honor Jacob’s life and the profound expression of love that was born out of his being.

Might we all have such an impact in such a short time.

On a Sunday morning, I brought several of the mail trays into my living room and began sorting them.

I was in search of swaths of color—interesting textures—that could be torn and set aside into the creation of a palette that would later become the material for a collage depicting Jacob hand-in-hand with a penguin and perhaps other children who had also endured neuroblastoma.

Jonah and Adrian were intrigued with the cards—with this life—like theirs but unfairly cut short.

“Why didn’t we send a card to Jacob?” Jonah asked me sadly as he sifted through the trays examining intently the words and images.

I explained that if we had known about Jacob, we would certainly have sent him a card.

Like an analyst, Adrian set about gathering the duplicate cards. He created rows and rows of singing Santas and penguins with twirling, ribboned hats, googly-eyed snowman and Rudolfs.

There were twenty-two identical cards that when opened produced a penguin wearing a pink and grey snow hat with green gloves singing Deck the Halls.

 I listened to those songs again and again as I absorbed the cards and their messages, tears occasionally springing to my eyes in response to the many examples of what it means to truly witness another’s suffering and to respond.

Periodically Jonah came to me to show me a card—having read the inscription and wanting to share it.

He was moved by the kindness expressed and I observed his sensitivity as he tried to process the life and loss of a boy his very same age.

It seemed like no coincidence that Jacob’s mother and I shared sons born in the same year.

I was halted again and again by the words written within the cards.

I felt privileged to have access to such profound outpourings of love.

People wrote about how much they cared about Jacob—the hero they had never met. They wished that they could be a fraction as strong as he.

Some encouraged him to fight—that he could beat this. Fight Jacob, fight.

Others assured him of the presence of God in his struggle. They knew he was not alone.

With all of these people showering him with their love—he was most certainly not alone.

They told about their own lives and challenges and about the way cancer had affected their families—their children, even.

The kids who wrote shared all manner of beautiful words and expressed how much they loved the same things that Jacob loved—Christmas and penguins, Minecraft and Legos.

The heartfelt outpourings in the cards came from individuals from all social, political and socio-economic backgrounds.

There in the cards were signs of every possible way of life—all humans responding to the same thing, the experience of another.

It makes me wonder how we can do more of this—more of seeing each other, more of recognizing the many ways in which we are the same. More of living in the way that Jacob would want us to.

 

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