sharing pain and joy: the miracle of st. jude

As my family struggles to find sure footing after the death of Judah Thacker, wildly loved son, brother, nephew, cousin, grandson and friend, I will share past essays written about him. I hope they remind you, as they do me, that Judah’s life and death continue to shape the way I see the world in marvelous ways. The following is from the fall of 2018.

When I grieve I tend to lose my keys. I forget people’s birthdays and kids’ lunch boxes. I tend to wander around aimlessly like our dearly departed dog, Copper, whom my brother consistently called, “Vacant.” I lose thoughts mid-sentence, without even knowing I trailed off (I am baffling to be around, a thing I know because I regularly look up to see my kids looking at each other with a side glance at me, saying-without-saying, “Are you watching this? Mom is losing it.”). Splendid.

Therapists tell me that my psyche is working hard to process grief that defies processing. That this effort requires a lot of work, and so there isn’t brain energy left to hold the grocery list, or to remember that the stop sign is not going to turn green, and that it’s my turn to go. This incompetence is challenging for me, a productivity addict.

Still, there is a beauty in it. I have come to wonder if perhaps the fog through which I move when I am overwhelmed with sadness is an unconscious attempt to protect the self.  That my deep essence knows I can’t do the juggling, so my hands don’t reach for the balls. My executive function knows it is broken, and so it signals to those around me, “Don’t give her anything to do. It won’t go well.”

It makes sense to try to protect ourselves, to pull back when we hurt. When I was young and my brother was leaving for college, I tried to do trial runs of surviving his absence all year. I would pull back, aloof, acting like I didn’t care that he would soon leave me behind. I thought it would make it easier. It didn’t work.

Sometimes the universe feels dark. We feel surrounded by tragedy, or hesitant after so many revelations of bad news. Whether it is personal pain or the wail of living in a world of such atrocious injustice, there are reasons to grieve. We walk wounded, nearly ducking at an innocent breeze, aware that trauma can lurk in any shadow. The hiding away doesn’t work though. Sometimes we suffer. Sometimes life is excruciating. Sometimes we can’t run fast enough to outrun the pain.

In Memphis, TN, St. Jude Children’s Research Hospital stands as a defiant beacon of hope. St. Jude is an amazing place that regularly delivers miracles; it is also a warehouse of personal tragedy. Outside the complex of buildings that houses so much pain—kids hurting and parents aching for the threatened life of their beloved child—exists a marker of the route of one of the most painful corporate experiences in American History. The road that runs alongside St. Jude is littered with signs that say, “Trail of Tears: Original Path.” In this specific location we confront deeply personal pain surrounded by expansive, generational, shared pain.

The first time I drove past St. Jude, I glimpsed the sign but didn’t catch the entire thing. I couldn’t believe it. A few hundred yards down the road, there was another marker. Long before St. Jude was built, long before the street was paved, thousands of Natives, forced from their land by the US Government, walked that road. Held children as they died on that road. And now, along that street, personal tragedy and historical trauma bear witness to each other. How do we witness such pain? How do we face evidence of corporate and historical trauma in the face of our own, personal disappointments or tragedies? 

It is easy to try to protect ourselves. To decide to shut down. If you are a parent walking into St. Jude with your kid, you probably don’t have any room to encounter or lament the Trail of Tears. Instead, you want to hide, to burrow away. One can’t face so much sadness. Our bodies and souls and psyches can’t take it. This is true.

However, I have learned it is also true that hiding away in my own personal grief does not make it easier. Instead, it is a beautiful thing to bring my hurting self to see all the other hurting selves and to be together there. To be a hurting human with other hurting humans. Especially when it hurts or causes discomfort, I now believe we must lean in to the pain in others that sees the pain in us. It might feel safe to hide within our own boundaries, but it is a sure way to dehumanize the soul as it braves the wilderness alone, forging a self outside of community. When it all feels like it is too much, it seems safe to discipline ourselves to be aloof. However, to be aloof is to deny your own humanity, because the human in you must resonate with the human in others. Especially in pain.

We have far too few expectations for our capacity to empathize and heal. Perhaps instead of shutting down in our pain, we now choose to bring it with us into our communities. Could we allow ourselves to be together in it? Could we expand our capacity to grieve the personal and the collective? Pretending to ignore corporate grief does not make it go away, nor does it alleviate our own encounters with suffering. It comes for us whether we are ready or not.

Perhaps we can learn to take a page out of the St. Jude playbook. They find a way when there is no way. They celebrate kids and have parties in sick wards, and laugh and play while kids endure unthinkable pain. They refuse to shut down in the face of suffering. They look it square on, with tears, and then continue to fight for every kid as long as they are able. The fight often brings more pain, but fight they do. They know increasing the capacity to fight for every kid does not diminish the ability to engage one kid with compassion. Could the same be true in us? Instead of withdrawing in our pain, could we find more healing through engaging in the pain of others? Could our burdens be more bearable if we lean in to stand with all those who bear impossible hardships each day?

Ignoring corporate angst, avoiding the pain of systemic injustice, does not protect me from my own personal loss. Is it possible that our own encounter with unspeakable personal pain teaches us how to grieve, lament, hope and then resist the systems of injustice that continue to wreak havoc on all of us? Rather than working to erect walls that promise to keep us safe, I suggest we increase our capacity to witness and engage with the pain of others. It might actually help us survive our lament, teaching us to hope again, with companions along the way.

lessons in grief

My nephew died on Friday from a brain tumor first discovered nearly 6 years ago. After undergoing radical brain surgery and devastating chemotherapy as a 4, 5 & 6 year old, he had a few years to be, as he put it, “Just Judah. Not Judah with cancer.”  17 months ago though, symptoms began, leading to a series of horrible discoveries:

14 months ago they were told his tumor was growing again

12 months ago he was so ill he was given a feeding tube

10 months ago they discovered his tumor had transformed into a deadly, high grade tumor that would end his life in the year ahead

9 months ago he began radiation to give him a few good months with his family

6 months ago his family waited in vain for him to experience those good months

5 months ago he started an experimental treatment that could possibly save or prolong his life

3 months ago he had an amazing 2 weeks traveling with family

6 weeks ago he was hospitalized, nearly killed by the side effects of his treatment

4 weeks ago he was told his tumor had doubled in size and he had weeks to live

3 weeks ago his family rushed home to be together

2 weeks ago his parents took him to Legoland and to the beach to soak up every moment

1 week ago he went camping with family, growing more ill by the moment, but trying to hang on

5 days ago his parents told us to come home to say goodbye

4 days ago we gathered and wept

2 days ago his parents held him as he died.

 

Today it feels impossible to even access feelings. The grief, the exhaustion, the worry about all the kids and adults who are wrecked by the loss of this amazing boy, is too much to bear. The missing him consumes us.

 There is a passivity that overtakes you when you grieve: Food appears and is taken away; faces lean in with red rimmed eyes and then vanish; arms embrace and then release; memories are shared, laughter comes; images flash, tears fall; thoughts roam but the effort to speak is too much.

Trapped in my brain, quiet, I have recognized a few moments of light.

I share them now, with every intention of unpacking them later. I hope they serve as a counter narrative to the loss, an act of resistance against the overwhelming sadness. Short episodes or thoughts, each one serves as a possible path forward, toward wonder, and maybe even hope.

  • 8 days before her son died, my sister urged me to go do something fun, saying, “Go breathe different air. Feel joy, ‘cause joy isn’t gone, it’s just smothered by this unthinkable darkness.” In the service, my sister Ellen, reading Mary Oliver, reminded us that joy often arrives suddenly and unexpectedly, and that when it does, the right move is to give in to it. It doesn’t matter that your heart is broken and might never be whole again; when a toddler loves yelling, “Poop!” at inappropriate times, you have to laugh! Joy, she said, isn’t meant to be a crumb. It comes in plenty, always enough. Let it happen, no matter the ravaged state of your heart.

  • In thinking about the service for Judah, I was reminded again and again that God is either drawn to us when we are honest about our loss, our anger, our pain, our doubt, or we really have built our “faith” scaffolding on utter bullshit. If faithful worship requires 100% joy and confidence every moment then I think “faithful worship” was built in a lab wholly removed from human experience. God has to be more comfortable with nuance and uncertainty and pain than that. Thank God for theologies of lament and for Beattitudinal doctrines, and rely on them when life happens to you.

  • When you lose someone you love, withdrawal presents itself as a wonderful option. Stop caring. Hide away. Protect your heart at all costs. But all of that is a lie. Healing only comes with more love. Love makes us vulnerable, but it is also the only salve that heals. Expanding love also creates space for new ways to imagine family. Walking wounded with others has made us realize we have new sisters and brothers, folks who feel like family because they love big in the midst of pain. When you are wounded, love more, not less.

  • People are astounding, and the right response to sacrifice is gratitude, not shame. People flew home from amazing trips to stand with our family. People drove 8 hours in one day in the middle of a holiday weekend to hug our necks. People showed up, and my first response was often shame. When we “feel bad” at the sacrifice of others on our behalf, we miss the chance to feel loved, known and grateful. Look the sacrifice of others in the face, appreciate the grace and love you are given, and receive it.

  • The social worker from Hospice admitted that losing a child is devastating. She said we all need to pay attention to the ways grief and pain can wreck us and our relationships with others. She brilliantly added that we might also pay attention to the “collateral beauty” that is certainly unfolding all around us. What a marvelous idea! Horrible pain does damage in ways we cannot even fathom, but it also sets the stage for beauty more stunning and restorative than we can imagine. Pay attention and give thanks when it comes.

Here’s to Judah, to a life remembered and cherished and mourned by many. Here’s to surprising joy, to collateral beauty, and to sacrifice, coexisting with pain. The presence of one doesn’t end the possibility of the others. The darkness is thick and overwhelming right now, but the light remains, and I am grateful.

on doubt and breathing

Sometimes the world is too much, and so we try to escape. Even that phrase—that I often overuse, “the world”—is an escape of sorts. We are often bad at naming the thing, the pain or joy, the love or anguish.

I’ll try again.

Sometimes hope feels like the easiest thing in the world. Like running fast and forever on a day when you can. Like a morning with plenty of time. Like a conversation that rings eternal. Sometimes hope is easy. But sometimes it isn’t.

Sometimes a band that holds the world together snaps and the shock, the injustice, the wrongness of it is so complete that despair and sadness feel like the only thing there is. A little boy who doesn’t get to grow up. A family with an ache that consumes. A younger brother who might not remember.

It is not a choice not to hope, nor a choice to escape. The wrong just becomes so big that you can no longer access the good. The paths to hope and joy become inaccessible. Sensemaking is out of the question. Perspective, like aging eyes, becomes blurry.

If such horrible things can happen, maybe the ground is not so solid. Maybe all our assumptions and dependables and granted takings are foolish after all. Maybe we should trust nothing.  What is true? Who is sure? What will hold me?

My friend Lori, with a voice like liquid wisdom, reminds me, “Bles-sed are those filled with doubt. Bles-sed are those who doubt.”

 

Breathe.

 

The questions don’t disqualify. And like good hospitality, suddenly I know I’m not alone in wondering how I can ever hope again.

And so, to circle back to our roots: Sometimes the world is too much, and so we can’t access the comforts or hopes or truths that usually restore us. Sometimes the present God feels distant. Sometimes we can’t write a treatise, or lecture beautifully on the nature of things, or gently advise a path ahead. Sometimes we can’t charge into battle, or trust the system, or even name the thing we need from a friend. No, we can’t do any of those things that usually hold the world together for us.

Perhaps though, we can wonder. We can appreciate a flare of beauty. We can create beauty (as resistance). We can accidentally be comforted by a God we feel distant from at the moment.

This feels like, and often accompanies, art. And so today, in the midst of wrestling with my own silence, I’ll offer the poetry of another. (When your own way is blocked, look around and find a companion. Mary Oliver is a great place to start.)

Breathe.

FromThe Ponds”

…Still, what I want in my life
is to be willing
to be dazzled—
to cast aside the weight of facts

and maybe even
to float a little
above this difficult world.

I want to believe I am looking

 

into the white fire of a great mystery.

I want to believe that the imperfections are nothing—

that the light is everything—that it is more that the sum

of each flawed blossom rising and fading. And I do.

“Wild Geese”

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body 
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.

From “In Blackwater Woods”

…every year

everything

I have ever learned

in my lifetime

leads back to this: the fires

and the black river of loss

whose other side

is salvation,

whose meaning

none of us will ever know.

To live in this world

you must be able
to do three things
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
 

“Don’t Hesitate”

If you suddenly and unexpectedly feel joy,
don’t hesitate. Give in to it. There are plenty
of lives and whole towns destroyed or about
to be. We are not wise, and not very often
kind. And much can never be redeemed.
Still, life has some possibility left. Perhaps this
is its way of fighting back, that sometimes
something happens better than all the riches
or power in the world. It could be anything,
but very likely you notice it in the instant
when love begins. Anyway, that’s often the
case. Anyway, whatever it is, don’t be afraid
of its plenty. Joy is not made to be a crumb.

Mary Oliver

Amen.