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 resisting: being with

I wrote the following on a very bad day full of very bad news. I wrote it as an act of resistance, because I realized that bad news has a way of becoming the center. The consuming, expanding center of everything. I felt the devouring begin to happen and I refused to allow the monster of bad news to erase the person for whom the news was bad. I wanted to resist the erasure, to remind myself that while bad news can be loud, I could learn to drown it out by singing the song of a remarkable child who belongs to a family who loves him. Today more bad news threatens to take all our attention, and I find myself resisting again. I won’t let the hard things take my eye off the good lives I know. Every instant we commit to loving those who hurt creates a moment of beautiful resistance. As perfect love casts out fear, stubborn belonging dispels the power of evil.

From July:

Today I found out my sister’s son will likely die within a year. He has a brain tumor, and it used to be a gentle tumor stuck in a bad place. This summer it turned into a ferocious tumor that respects no boundaries. His name is Judah, and I have to remember that he is the one, the star of his life, not the damn tumor. The tumor seems to be calling the shots, but Judah’s life is much more than a tumor bearer. He is an image bearer. He was put together by a creative and loving God who knows his name. Who knows his every thought. Who sees each tear that falls, and hears him when he calls.

It is easy to forget this in the midst of hospitals and ERs and pain meds and appointments and tests and labs and waiting rooms and waiting in general. But Judah himself is a gift to us. He is clever. Super smart and observant and notices stuff that others don’t. He loses himself in imaginings. He laughs at funny faces. He latches on to clever turns of phrase. He loves to be the one who knows, who understands, who gets it, and so he builds connections with the adults he trusts. He’ll pick up on a phrase and then, hours later, look at the adult who first said it, and repeat it with a knowing glance, “Oh, here we go again…we’ve been here before.” Endearing, this ability of his to connect. To remember. To create a thing we share. He has made me feel worth observing.

In the face of bad news, it is all too easy to turn away, to shut down, to pretend we don’t care because we can’t imagine how to fix it, to try to minimize the pain by averting our gaze. But when you love someone, these methods don’t work. You can’t turn away, because the grief is in every corner. The only thing to do is to lament. To acknowledge what has been done and to confess what you have done.

To cry out for all the sadness, to witness the pain, to sit in the grief, to behold the breaking heart.

Apathy and indifference feel viable until they aren’t. Distraction works until it doesn’t. Therapists tell us we cannot heal until we talk about our pain. There is power in bearing witness. In being present for the awful.

Sometimes this life can feel like a fight to win. Or an effort to be upwardly mobile. Or a platform to find followers. Or a canvas on which to leave a mark. Or a warehouse in which to horde wealth. Or a story to write that makes you the exceptional hero.

What if it is none of those things? What if life is really about the chance to show up and be present with others? What if life is a block of time in which we get to lend a hand to others, be a companion on a fearful fretful journey, and bear witness in all the possible ways? Bear witness to the truth you have experienced, to the ways of God as you understand them, and also to witness other humans being human? To watch, observe, listen and stand next to? What if life is about being with?

When God gave a vision to Isaiah, his Prophet, about the coming Messiah, the One who would redeem and save the people God created, he called him “Emmanuel.” God with us. I have come to believe that bearing witness to Emmanuel is the best we can do. By this I mean that perhaps the best we can do is to show up in someone’s life and offer to be “with” them. If we hope to emulate God then we must be people who are with other people, as Christ was. We must strive for the “with.”

 In the weeks and months ahead, my sister and her husband will be “with” their hurting son and his siblings. They will be companions. They will observe and listen and lean in. In this way, they will elevate Judah the child of God, not Judah the kid with cancer. Judah is Subject of this story, not the object of a disease. Judah is worth witnessing. Judah is worth being with.

 When we see so much pain around us, from counselor offices to Senate hearings to adolescent angst to refugees fleeing home, let’s work to remember that the people enduring the pain are the ones we want to stand beside. Don’t look to the problem before we see the people suffering underneath the problem. It is so easy to focus on the trouble, to give attention to the pain. The better path though, is to hold on to the uniquely fabulous person underneath all that trouble. Good energy is spent telling the story of a person’s self, refusing to allow them to be eclipsed by the pain they endure or the problem they survive.

Bear witness to the lives of the people around you. Show up. Make time. Pay attention. Remember. These are ways to resist the darkness: Give people a place to belong when the path ahead is dim. Remind them that they are seen and loved, not lost in all the pain. Find the story of them, not just the suffering. Be with.