Open-Hearted in the Darkness

Today’s post is by Sarah-Kate Fishback

In both joy and pain, love is boundless. Love is open, allowing our hearts to be touched and moved by what exists. Love is honest, willing to be present to life just as it is, in all its beauty and ugliness. True love is not blind at all; it sees what is and feels it as it is with no rose-colored glasses and no anesthesia.

-Gerald May, The Awakened Heart

Where is beauty in impossible darkness? Through grace, this year I’ve discovered a multitude of active, hopeful, communal practices to support an open heart while walking with a friend through her child’s illness.

In late 2017, beloved friends, Mark and Katrina, received the awful news that their adorable and joy-filled one-year-old son had a rare genetic condition called CGD, chronic granulomatous disease, rendering his tiny body unable to fight infection.

The path ahead involved a terrible choice, to quarantine their son indefinitely, or to immediately begin the long, difficult and risky process of a bone marrow transplant (BMT). Bravely, our friends chose the latter, quitting their jobs to provide around-the-clock care for their baby in what would likely be a year-long process.

In this dark moment, our pastor, Molly, called an intentional circle. She invited a group of women to gather with and around Katrina in intentional love and support one Saturday afternoon in January before the bone marrow transplant process began. Molly also invited us into the prayerful work of each writing a letter of love that Katrina could carry with her into the difficult days ahead in the hospital.

As a graduate of YALLI, Shalem’s Young Adult Life and Leadership Initiative, I had been initiated into the sacredness of circles and deep listening. I entered the letter writing and circle feeling scared and quite powerless but deeply supported by an open, willing heart and the knowledge that companionship and presence are incredible gifts.

On a grey January morning, we gathered in a circle in a small room. A gorgeous spread of fresh fruit, nuts, delectable sweets, a tea kettle and teas interrupted the heaviness of the moment. Cozy floor chairs and buttery blankets on hand to wrap around ourselves kept the cold outside at bay.

With all of our fears and emotions, we began mindfully with silence, breathing, a body scan and a scan of our feelings, noticing anything we were pushing away and gently welcoming it in. With this grounding of silence and presence, we held ourselves and one another in compassionate presence. We welcomed honest hopes, fears and questions and gave them the space to be voiced.

In this beautiful, vulnerable and safe circle, we took the risk to voice how difficult it is to receive and to say no. We gave ourselves and one another permission to communicate truthfully from our spiritual hearts, set meaningful boundaries when needed, ask for help and express feelings.

Katrina prepared a collective creative ritual for the circle. We mixed bath salt, oils and beautiful dried chamomile and roses in a large bowl. Each person added an ingredient and mindfully selected a word of intention we wanted to offer Katrina for the days ahead. We took the bath salts home, a sacred self-care ritual prepared for us in the days ahead. The space opened by circling that grey January afternoon sustained us.

Because of the urgency of keeping germs away, the family had to be physically quarantined for months. Cut off from contact with friends, Mark and Katrina asked if anyone willing would come to the hospital courtyard to hold vigil and notify them of their presence when there. Over the weeks and months the courtyard held prayer, impromptu meetings, children playing and tears. Anyone was welcome to come hold space for our friends in this simple and embodied way. Some stayed in the courtyard; others used the invitation for a prayer walk around the hospital. These were small acts of love, but active and intentional. In spite of the circumstances, I noticed myself feeling joy and comfort as I gathered with others in this way.

Aside from the courtyard, circles were called as needed. In these circles, we drew on the spirit of our first meeting, intentionally deepening our presence with one another and using truthful speech. In one meeting, we tended to our bodies by getting massages. In another, we collectively made a dream catcher to protect the sleep of the little patient, infusing it with our prayers and hopes as we worked.

One Sunday in April, our friends learned the devastating news that the first BMT had failed to engraft, or take root in their precious son’s body. Out of town for a wedding, the news hit me like a huge body blow. Back home, Molly and our other pastors canceled what was scheduled for church to create a space for mourning and prayer. Folks who had been holding vigil and praying together participated in a prepared musical and poetic liturgy to cry, express sadness and hold the family and one another in prayer.

Medically, the last option was to try one final bone marrow transplant with an estimated 50% success rate. Preparations began immediately. After another run of chemotherapy to intentionally create a weakened immune system in the little body, the day came for the second transplant. On this day, a crowd of folks packed the hospital room with heavy and hopefully expectant hearts. The group prayed over the transplant materials, played music for the sweet young patient and read the Gerald May passage that begins this story. Our bodies gathered together were fervent prayer.

Molly called a circle a few weeks later. We met in the forest, an old mill wheel transformed into a table with another beautiful feast of food and refreshments. We melted in the summer heat and fended off mosquitoes as we gathered in the sacred space. We expressed the truth of our hearts to one another in all its complexity. Katrina surprised us all by sharing news that an initial test result showed a successful engraftment. A final test would be needed for conclusive evidence, but we celebrated this tentative good news with an impromptu dance party around the mill wheel. Our spirits still felt heavy and tentative, but we invited our bodies into joyful celebration while Rihanna belted, “We found love in a hopeless place.” Later that week we received affirmation. The final test showed 98% of the transplant cells engrafted, an incredible success.

When the facts were impossible and too much to bear, we found life engaging in shared contemplative presence, prayerful writing, self-care, artistic creation, feasting, truthful speech, silence and intentional movement. The miracle we found is that this sacred space is always available to us. We lived Gerald May’s words that “Love is open, allowing our hearts to be touched and moved by what exists.” I am forever grateful for the healing of my friend’s son and grateful still for beautiful community and hearts open to walk through the joy and pain alike.