The Courage to Acknowledge Our Frailty

Friday, March 3, 2017 - 5:00 am
A child with microcephaly receives aquatic physiotherapy treatment with a doctor in Recife, Brazil.

The Courage to Acknowledge Our Frailty

Most, if not all, of us will be disabled in some way, at some point, in our lives. Many of us are disabled during the duration of our entire lives.

If we’re lucky enough to live a long time, we all get old and our bodies fall apart.

We all die. Sometimes children even die.

Click away yet?

If you’re still here, stick with me. I’ve been thinking about the collection of human truths that our society most strongly resists acknowledging — things like disability, disease, aging, death. What does it say about who we are and what we are afraid of? What does it say about what unexplored opportunities there might be for truth-telling and liberating wisdom?

Take the last truth, the one probably most abhorrent for any of us to face head on. I’ve slammed into it on a couple of occasions, most recently when I was pregnant with my first kid and met another pregnant mom at a barbeque. “Your first?” I asked.

“No,” she said, matter-of-factly.

“How old is your first?” I followed up.

“He died, actually,” she calmly said, then went on to explain that her son had died 21 days after he was born of a rare disease, called polymicrogyria, which literally means too many small folds in the brain.

I don’t remember her exact words in that moment. I mostly remember the sense that the ground under me shifted, almost like I was experiencing a mental earthquake of sorts (fitting as we’d just moved to the Bay Area). On the drive home with John, my partner, I told him what I’d learned and we both talked about how inconceivable that kind of loss was and how much we admired her strength and grace as she told us their story.

I would come to know this family quite well. They now have two healthy children, one of whom, Finley, is close friends with my oldest, Maya. They fight and make up like sisters — one minute wrestling tenaciously over a seat they both want to sit in, the next sneaking plastic jewels and illegible love notes into one another’s cubbies at preschool.

Finley knows about her brother, Lars. There are pictures of him in the house. She has spent time at the George Mark House where he died — one of only two free-standing children’s hospices in America. (There are, by way of comparison, 54 in the U.K. alone.) Most children in this country die in hospitals surrounded by fluorescent lights and beeping machines, their parents exhausted from sleeping in chairs next to the bed and fighting with insurance companies.

At George Mark, it’s another story. The entire house is filled with things that delight children — toys and gardens and animals. On more than one occasion, they’ve brought camels on site, because — as founder Kathy Hull explains it — they’re not focused on the limitations these kids face. These kids are dying. Once that is acknowledged, there is a freedom in being able to answer every inquiry with “Why not?” Through the generosity of donors, no one is turned away for lack of funds.

When I visited George Mark and saw the warm therapy pool, where Lars seemed most at ease in his final days, and a sensory room with its plush textiles and psychedelic lighting, and heard about the lemonade stands and the annual prom, I was so struck by the joy that permeated the place. There is profound and relentless loss there, of course. The place is defined by loss. And yet there was a kind of palpable liberation in facing up to that.

I see this same freedom in the emotional courage of my friends who lost their son, too. They are unusually in-touch with what is sacred in the midst of the chaos of this moment, juggling two small kids and two big jobs. We rarely hear them complaining about sleeplessness, as empathic as they are when we do. They’re always up for hosting last-minute dinners at their house — the kids eating more ice cream than vegetables, and sometimes acting like wild things, and, oh well, who wants a glass of wine, and isn’t it all so amazing?

And it is. Which is something that is often hard to hang on to when the default assumption is that our very safety and/or health is guaranteed. It’s not. I’ve learned that again (one must learn this over and over again) from being in relationship with them and other friends who experience disability daily. I’ve also been reminded of it while devouring the new podcast Terrible, Thanks for Asking.

If we have the courage to acknowledge our own frailty, and the frailty of those around us, then we would treat healthcare as a human right, not a partisan football. We would resource our institutions differently — creating the space for all children who are going to die to live in settings like George Mark. We would design public transportation and workplaces and schools with the disabled in mind, and as blind architect Chris Downey points out, they would therefore be better designed for everybody.

And perhaps most importantly, if we had the courage to acknowledge our own frailty, we would relate to our lives and those we love differently. One of the great spiritual challenges of my life is managing my own fear of losing those I love. I sense the ways in which there is a chance to feel the fullness of the miracle of my daughters only by way of acknowledging that their very existence is not promised. It’s the darkest truth I can imagine looking straight in the eye, but it simultaneously helps me see them in technicolor.

Likewise, if I think of my health and physical ability as a momentary pleasure, I feel less angry when I’m sick and less bitter about losing control. I see my body for what it is — a complex system that works a surprising amount of the time. I want to take tender care of it rather than perfect or resent it. That makes me more tender towards everyone else. That makes me marvel at how often we all get by, thanks to one another — even as we have such a long way to go in more publicly addressing disability and death.

Paulo Coelho writes, “The strongest love is the love that can demonstrate its fragility.” I would argue that what’s true on the micro level is often true on the macro level; the strongest society is the one that can acknowledge its frailty and mortality, too.

Share Post

Contributor

is a columnist for On Being. Her column appears every Friday.

Her newest book, The New Better Off: Reinventing the American Dream, explores how people are redefining the American dream (think more fulfillment, community, and fun, less debt, status, and stuff). Courtney is the co-founder of the Solutions Journalism Network and a strategist for the TED Prize. She is also co-founder and partner at Valenti Martin Media and FRESH Speakers Bureau, and editor emeritus at Feministing.com.

Courtney has authored/edited five books, including Do It Anyway: The New Generation of Activists, and Perfect Girls, Starving Daughters: How the Quest for Perfection is Harming Young Women. Her work appears frequently in The New York Times and The Washington Post. Courtney has appeared on the TODAY Show, Good Morning America, MSNBC, and The O’Reilly Factor, and speaks widely at conferences and colleges. She is the recipient of the Elie Wiesel Prize in Ethics and a residency from the Rockefeller Foundation’s Bellagio Centre. She lives with her partner in life and work, John Cary, in Oakland, and their daughters Maya and Stella. Read more about her work at www.courtneyemartin.com.

Share Your Reflection

Reflections

  • Joy Solomon

    COURTNEY- as usual, brilliant inspiring and true. I work with older adults who are victims of abuse and what you describe makes perfect sense for their living and healing and dying as well. I’m going to share your magical words with everyone I know. NEVER STOP WRITING!

    • Courtney Martin

      Thank you so much. Tattooing this one on my arm. (Metaphorically speaking, of course.)

  • Louis Schmier

    At 77, though I am in top physical, mental, and spiritual shape, I know that I am walking on the downside of life’s mountain. And, eventually, I will have to deal with the fact that while my spirit will remain strong, my body will start, as you say, to “come apart.” But, wasn’t it Emerson who said that a person’s view of the world is a confession of her or his character? Some of the most valuable and meaningful characteer-shaping–transforming–experiences I’ve had, experiences that changed my view of myself, others, and the world around me—my personal and professional epiphany in 1991, “beating” cancer in 2004, and surviving unscathed a massive cerebral hemorrhage as a “walking 5% miracle” since 2007—were not the most enjoyable, not the most painless, not the most comfortable, not the easiest to deal with, and not the least challenging. Yet, because of them, as a person and as a husband and as a father and as a grandfather and as a friend and as a professor, I became more understanding, more compassionate, kindlier, more loving, more faithful, and more hopeful. I became what I call a “soft” person and a “soft teacher.” This transformation occurred because I came to see that my “experiences” were gifts. I came to understand what the rabbis meant when they said live your life today as if it is your last. I slowed down; I now see instead of merely looking at; I listen to instead of merely hearing; and I focus in the moment. I came to understand how fragile life is, that we have at best only limited time given to us, and we have no guarantee of the next minute, hour, much less the next day. And, so, I concluded that the greatest sin anyone can commit is not to unwrap, accept, and revile in the present of “now” presented to us by the present.

    • Courtney Martin

      Wow, this is such a gorgeous reflection. Truly. Thank you Louis!

    • Abdul Aziz Boadi

      This is such a deep profound reflection!. ” This transformation occurred because I came to see that my
      “experiences” were gifts. I came to understand what the rabbis meant
      when they said live your life today as if it is your last. I slowed
      down; I now see instead of merely looking at; I listen to instead of
      merely hearing; and I focus in the moment.” I couldn’t agree with you any much more on this. Thanks for sharing.

  • Gabby

    Much of the anxiety pervasive in the modern world, and to some extent, I think, the faith come from widespread acknowledgement of our frailty as individuals. Still people vary in what they think the public or government role should be in supporting people through the calamities of our lives. I think you are right that for people who don’t naturally think of other people’s pains as being as nearly as important as their own, it is instructive to realize, “It could happen- will happen in some measure, at least- to me.” But I don’t think that realization necessarily decides for people what the government’s role should be in people’s lives.
    For those who do not live a life in which great disability is very personal, I strongly recommend two books by the scholar, writer, and public intellectual Andrew Solomon. Far from the Tree is his study of the challenges and life of parents of children who are “different,” including a chapter on raising children with each of a variety of profound disabilities but also characteristics which are not disabilities in a medical sense but that make life more difficult. His other exceptional book is specifically about life with major depression, called The Noonday Demon.

    • Courtney Martin

      I love Andrew Solomon’s work for just this reason and did think of him as I was working on the column. He goes so deep with his subjects and manages to look straight into the heart of things others turn away from instinctually.

  • Barbara Hoag

    This column is a timely companion to the ritual blessing I recieved on Ash Wednesday, “Remember… to dust you shall return.” Thank you, Courtney.

    • Courtney Martin

      I’ve had a couple of people point out the Ash Wednesday resonance. Such a beautiful accident.

  • Roy Reichle

    So much of what I think about the world is tempered by a historical and a global awareness. How fortunate we are to have any of what we call “healthcare.” Two short lives ago, 150 years, all most of us would have had would be a family member to hold our hand while we died. There would have been few medicines available, no surgical procedures of any complexity. This is how humanity was meant to live and die. Anything else is an beneficent artificiality.

    I love modern medicine, it keeps me from putting a bullet through my own head, but I can’t really see healthcare as a basic human right, not in light of history and even existing realities in undeveloped parts of the world. Do I want government to fund healthcare? I’m not sure. Most of the time, government is pretty inept at running big programs. As a personal trainer and nutrition coach, I also am afraid of people becoming too reliant on the “fixing” side of healthcare instead of focusing on the preventative side, which in every scenario is best for the individual and the nation’s fiscal situation. Why does everyone, liberal and conservative alike, ignore that truth? I have seen in too many situations, from education to personal finance, that if one doesn’t have “skin in the game” it’s taken too lightly–at a cost to people around them. I have no reason to believe otherwise.

    I have always been a man of the outdoors, taking long, solitary backpacking trips and rock climbing and mountaineering around the world. In every natural place, I am hyper-aware of human frailty. To not be is to court death. Nature’s rules are harsh and unforgiving, and no one who enjoys nature in an unadulterated state, can forget that.
    I have always known my frailty, and through my love of history, known the frailty of the social experiments we call government. So, let’s just say I have learned caution when it comes to pointing out solutions. Too often our human idea of control forgets just how powerless we are in the face of real danger.

  • Becky Livingston

    “if we had the courage to acknowledge our own frailty, we would relate to our lives and those we love differently.”Yes, I believe our conversations would be richer and more real. Who doesn’t want that? Those, I suppose, who need to appear stoic at all costs.

  • Abdul Aziz Boadi

    “If we have the courage to acknowledge our own frailty, and the frailty
    of those around us, then we would treat healthcare as a human right, not
    a partisan football.” Thanks for sharing, Madam.

  • Pingback: Reconciling Righteousness and Recalibrating Our Reactions - Trent Gilliss | On Being()

  • Lauren Small

    Thank you for a beautiful, and much-needed reflection, on something most of us would rather not think about: the death of children. I volunteer each week in the playroom in the pediatric oncology clinic at my local hospital, and seeing these children and their families inspires me every time I am there. So many of them make it, and it’s a joy to see them grow and thrive, but not all of them. You are right that witnessing the illness of children changes our perspective on what matter in life. We have to keep on, working with everything we have, to help those who are suffering and the most vulnerable among us.