I do these talks to make a point that you can have a painful life, you can suffer, you can experience what it’s like to feel like a human being — all those messy and gross emotions — and yet you can make a life for yourself that you are very, very proud of.
~ Claire Wineland

As I have spoken and written of elsewhere, the near occasion of death has a way of focusing one’s attention, concentrating one’s thought, improving one’s vision. When death moves in and becomes a neighbor, the awakened and awakening ones all become near-sighted. Even far off things dilate. Suddenly, the hypothetical becomes certain, the theoretical becomes real, the academic plain, the assumptive definite, the vague very clear, and the truth apparent.

The mystics from all wisdom traditions have counseled their adherents, in the words of St. Benedict, to “keep death always before your eyes.”[1] They encouraged this not because they were kill-joys or enthralled with the macabre, but rather to urge their listeners to allow death to illuminate the essential, to reveal what matters most, and to inspire them to give themselves to what is worthy of their “one wild and precious life.”[2]

The teachers of certain forms of meditation speak of one-pointed attention in which the mind moves from diffuseness to focus.[3] St. Benedict’s guidance is not meant to make death the sole focus of one’s attention, but rather the contemplative lens through which to see life, to understand living, to adjust one’s sight to the mystery of being itself and to the beatitude by which we live and move and have our being. Like the headless, armless torso of the sculpted Apollo before whom the surrendered and susceptible poet Rilke stood gazing, encountering and contemplating death, sages suggest, have the power to break us open to such mystery, beauty, and truth that like the poet we too might hear in our deepest center “You must change your life.”[4]

There is a seeing, an inborn intuitive knowing deeper than cognition, a contemplation rooted in experience that wakes us up, takes hold of us, and alters our vision in such a way that nothing can be seen the same way ever again. Like Jesus’ last cry from the cross that tore in two the curtain of the temple in Jerusalem, the proximity of death has the potential to pull away the veil that hides us from the epiphanic splendor of all life — all people, all creatures, all moments – exposing us to the holy of holies on earth as it is in heaven. For those who have eyes to look and ears to listen, let them see, let them hear.

For the past half-dozen years Claire Wineland, a young woman from California who embodied the antipodal insight of St. Benedict and the sages about living in the company of death, garnered the increasing attention of her peers and many others through YouTube videos, TEDx talks, and other public addresses. Suffering all her life with cystic fibrosis, a genetic and chronic illness, Claire died a little over a week ago after suffering a massive stroke following a double-lung transplant. She was twenty-one years old.

Claire had dodged death from her first days, survived a sixteen-day induced coma when she was thirteen, endured more than thirty operations, required a plethora of medications, a nearby nebulizer, and hours of breathing treatments each day, and a feeding tube each night in order to wake, see the morning, and do it all again. She rock ‘n rolled with her portable oxygen tube wherever she went, eventually needing a wheelchair, and in the end changing her mind and opting for a double-lung transplant she had previously rebuffed, feeling she still had more to do with her life.

Bright, sassy, sharp-witted, and tough, she was friends with laughter. Her mother reminded others that her daughter’s full name was Claire Lucia meaning “clear light.” And that she was. A darling of the medical staff, she spent so much time in the hospital (about a quarter of her life) that she made it a habit to decorate her room on extended stays. Nate Berkus would have been proud. With its cheerless walls, standard hospital bed, constant comings-and-goings of attending medical staff, machines with their concomitant beeps and wires, as well as her artwork, guitar, strung lights, and visits from family and friends, her room was a window into both the intense drama of her life and the infectious charm of her spirit.

With death as her oldest, closest, most constant, and faithful companion, Claire was a modern day prophet who, after encouragement from others when she was fourteen, came to inspire people with her frank talk, self-effacing humor, and hard-earned wisdom. She exhibited a gritty grace under pressure, and whether exuberant or exhausted there was an abiding transparency that simultaneously revealed an understandable unfinishedness and a surprising earthy elegance.

After much introspection dating back to when she was a little girl, numerous conversations with family and friends, an unplanned inaugural talk, and then words offered on videos or in person at various gatherings and conferences, Claire found the pitch, pocket, and passion of what came to be her song.

In May of 2017, Claire gave a TEDx talk in Encinitas, California. When she hit her groove this is what she said:

[T]he truth is it’s not about being happy. Right? Life isn’t about just trying to be happy. Honestly, happiness is a dopamine reaction in the brain. Like if I was to . . . tell you all just to be happy, I’d say go smoke a joint and listen to Bob Marley and call it a day. We don’t need any of this TEDx stuff, you know? Life isn’t about being happy. Life is a rollercoaster of crazy emotions. One second you’re fine, and the next second you feel lonely and despair and like nothing ever is going to be okay again. It’s not about emotions. It’s not about how you feel second to second. It’s about what you are making of your life and whether you can find a deep pride in who you are and what you’ve given. Because that’s so much more impactful, so much deeper than whether you’re happy or content or joyful.

These are daring words, prophetic words, unsettling words. “Life isn’t about being happy.” It’s not? Claire Wineland said No. It’s about being human, and acquiring depth as a person, and from that place embracing life — the awful mess of it as well as the awesome mystery of it. It’s about making something of life with the raw materials of your life, something beautiful, impactful, something that benefits others and is not primarily self-referential.

We live in a nation where many people are “fortunate” but where many others suffer from one or two life-sucking ailments when it comes to happiness. In the first case, the inalienable right to pursue happiness pledged to the citizens by the founders of this country has been disproportionately accessible to people of privilege and power. The pursuit of happiness has favored those who have had the power or position to press their finger on the scales of justice or who have been the beneficiaries of others who tipped the scales in their favor rather than balanced them in favor of all.

In the second case, and more directly related to Claire Wineland’s insistent words, is the fact that the commoditized happiness presiders and beneficiaries of the dominant culture peddle, promote, and celebrate is at its core – take your pick — an illusion, a lie, a dead end, a sham, an infection. So much that goes under the guise of happiness in contemporary American culture is little more than a concoction of empty calories for the spiritually starving. It is this pain-free, uninterrupted and undisturbed life, this ease of life so many of us unconsciously feel entitled to or quickly associate with happiness that Claire impugned and rejected.

Perched on hospital beds for years, enduring pain and aloneness not even those who loved her most could assuage, Claire Wineland had the sagacity to wed the sorrowful and joyful mysteries of her life, and the wisdom to look with the eyes of her heart to see that the happiness the PR Departments were selling was unworthy of the giving of one’s time, one’s hope, one’s life, one’s sacred significance.

When it comes to contemporary secular or religious modes of life in America today, Claire’s words cut through any and all faux spiritualities that mistake happiness for antiseptic tranquility, or the absence of pain and suffering, loss and grief, or the presence of prestige, power, and financial success. This skewed, often narcissistic view of happiness Ms. Wineland thumbed her nose at is the same bill of goods sages and prophets have been warning against and debunking for thousands of years. Jesus warned, “What will it profit them if they gain the whole world but lose their soul?”[5] Claire continued her song:

And that’s why I kept saying yes to talks. Not because I wanted to talk on stage for long periods of time. . . but because I wanted to share the fact that you can suffer and be okay. You can suffer and still make something. That the quality of your life isn’t determined by whether you are healthy or sick or rich or poor, not at all. It’s determined by what you make out of your experience as a human being, out of the embarrassing moments and the painful moments. It’s what you make and what you give from that place.

Claire’s message flies in the face of a culture that is addicted to the cheap tricks of distraction, committed to evasion, practiced in the art of numbing, unaccepting of imperfection, and terrified of pain. At a minimum, she is insisting from her experience that meaning, self-donation, and fecundity can abide side-by-side with sickness and suffering.

Recalling the story of Dionysius, the god of fermentation and harvest who brought wine with him to earth, Claire explains that at first, the inebriated people think Dionysius has brought it as a poison to punish them for wrongdoing. In fact, he has brought it for pleasure and delight. Then Ms. Wineland reminds her listeners that making wine involves fermentation, which is “essentially rot.” She went on:

[T]he reason I bring this up is because it’s very similar to the way that people see sickness. We view it as a curse because we don’t understand it. We view it as a curse from the gods because we haven’t come to appreciate our own human suffering. But if we wait long enough and . . . go through life and try to make something of ourselves, maybe one day we can realize it’s actually a gift.

A gift? The audacity of her words was matched only by the audacity of her spirit. To anyone who listened, it was clear she said none of this for effect. She was not prone to glamorize or glorify suffering. She appreciated her suffering in the sense that she had come to know in and through her broken body the ineffable value of it, and its intimate place in her own human becoming. Just living all these years was audacious enough. It seems to me that the path she had traveled led her to the place where she trusted a deep-rooted sapiential foolishness more than the supposed wisdom of normal sensibilities. Heeding Claire’s words and honoring her conviction impels me to pass back to my own spiritual path informed by a Catholic understanding of sacramentality and dare to say that even embarrassing or painful moments, let alone the experience of suffering, dying, and death, can be the unlikely means of grace and bearers of God’s presence.

A bit later in the same TEDx talk, Claire recounts celebrating her 18th birthday at her favorite Thai restaurant in Los Angeles surrounded by her family and friends in “a circle of love” when she had a revelation, an awakening of sorts, and an extended moment of deep satisfaction.

. . . I get hit out of nowhere with this realization that I became the person that little me would have been inspired by. . . That I became the person who wasn’t denying their illness, wasn’t saying I hadn’t suffered. I was taking my experience and I was giving something. I was doing something. I was living a life that I was proud of and that little me could have been proud of.

Weeks before his death, the renowned Rabbi Abraham Heschel was interviewed on a taped, hour-long television show. With only a minute left Carl Stern, the interviewer, asked Dr. Heschel if he had any final words for the young people who might be watching. He responded:

I would say, let them remember that there is a meaning beyond absurdity. Let them be sure that every little deed counts, that every word has power, and that we can, everyone, do our share to redeem the world in spite of all absurdities and all frustrations and all disappointments. And above all, remember that the meaning of life is to build a life as if it were a work of art. You’re not a machine. And you are young. Start working on this great work of art called your own existence.[6]

Rabbi Heschel spoke these words a quarter century before Claire Wineland was born. But it was as if Claire intuited and integrated the truth of this wise man’s words who like her had suffered much and was well acquainted with grief. Claire found her power, exercised her audacity, played her part in the redemption of meaning over absurdity and subsequently built a life that was a work of art. And like all true art, Claire lives on, her life working on us, challenging us, inspiring us, evoking a response from us, and eliciting our desire to create our own work of art out of the unique materials given to us.

◙ Claire Lucia Wineland (April 10, 1997 – September 2, 2018) ◙ 
Peace be with you and your family, Claire. May you be embraced with extravagant love.

For a 30 minute film about Claire, click here. It will be well worth your time.

All the quotes above from Claire Wineland are taken from this TEDx talk. I highly recommend it. If you are interested, click here.

In addition to the two films listed above and other YouTube clips by or about Claire, I also referred to Jessica Ravit’s article.

NOTES

[1] The Rule of Benedict 4.47

[2] “The Summer Day” in New and Selected Poems by Mary Oliver

[3] See, for example, Meditation: A Simple Eight-point Program for Translating Spiritual Ideals into Daily Life by Eknath Easwaran

[4] “Archaic Torso of Apollo” translated here by Mark S. Burrows

[5] Mark 8:36 slightly adapted.

[6] “Carl Stern’s Interview with Dr. Heschel,” in Moral Grandeur and Spiritual Audacity, p. 412.