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.

han solo, on faith and hope

I recently watched A New Hope, the film that introduced my generation to Star Wars. Our family gathered to view it for my nephew’s 10th birthday, projected on a big expansive wall, with bags of popcorn and candy in abundance. It was such a beautiful night, not just because that movie is nearly perfect in the way it threads early friendship, captures the angst of longing to outgrow one’s childhood, describes good and evil, explains the sacrifice necessary for resistance, and demonstrates the way we mechanize the serving class, reducing them to machines even as we delight in their simple mindedness (It really is a fabulous film).

It was also a beautiful night because my nephew has a brain tumor, and we don’t know if he will have another birthday. The pain of carrying this knowledge is excruciating. The weight overwhelms when added to any simple task. It is always present, and always terrible.

 It is especially awful in the way it disorients us in relation to time. When a young person you love might not live long, you feel regret and longing for the time before, when you did not know. You feel the present in your bones: the frantic, fleeting, precious present, and you want to grab all of it. The future looms, though. You fear it, hating what it brings. It is easy to forget that you are at war with the future on a hard day though, and you might accidentally long for it to end. Then you’ve betrayed yourself, because you vowed to avoid the future, to never ask it to come. Part of the weight of grief is the way it makes you betray yourself.

 Judah Finn, my nephew, has been in Memphis since July, when his mom and dad arrived with their family for a 2-day appointment. They haven’t driven east since, but are suspended, like time, on the western edge of the state. Judah is being treated at St. Jude, a magical place that celebrates the dance of past, present and future in remarkable ways.

When you enter St. Jude, you are accosted by pictures of bald children. These aren’t fat little babies, but kids of various ages, kids whose hair should be pulled back in a ponytail so a cartwheel can be perfected. Kids who should be experimenting with hair gel and the wondrous spikes it can create. The shock of their sunken eyes and round heads exposed by chemotherapy makes you want to look away. But then you realize each of these faces is a portrait being held by even bigger pictures of adults. The kids smile in the midst of pain, but the adults are beaming. They smile the smile of gratitude. They are survivors, holding pictures of themselves from their pasts. The images of the adults, with long lives behind them, are juxtaposed with the kids they once were, living through a nightmare. Their futures came, with wonder, so their pasts could be gladly left behind, rather than gripped with longing. Suddenly you realize that these pictures don’t mean to accost; they invite you to believe.

The thing about faith is that it is elusive. It can be hard to find, hard to trust, hard to know. I used to hear people describe how they walked through hard places, carried by their strong faith. Now I am more likely to hear people say the Universe feels really dark right now. People say this not to explore some vague sense of spirituality; they are simply people whose life experiences leave them wondering if they can trust the world as they previously thought it to be. When life is devastating, when it feels as if all the things we once trusted are no longer safe, where do we turn?

As a person of faith, I turn to God, to a Messiah who moved toward hurting people in time and space to redeem them, to bind up their broken hearts and to comfort those who mourned. Still, this turning to God thing can feel foolish, or perhaps insufficient, when the life I experience is wrong. It is wrong for my sister and her husband to cling to the life of their son as a tumor tries to take him away. It is wrong for their family to be suspended in Memphis, for their sense of time to be disorienting. It is wrong for them to want the future to come so Judah’s siblings will remember him. It is wrong for a God who heals and comforts to see God’s people broken and grieving.

And yet, I turn to God and find comfort there, even when I’m angry and not sure I want to believe anymore.

In a remarkable story told by one of his close friends, Jesus tells a man whose child is ill that he must believe, for believing leads to hope and hope leads to love and love sustains us. The broken man, responding, says to the Giver of all life, “I believe. Help my unbelief.” This is a story I cherish, for it captures well my dance with faith. It is everything to me, and it is fickle, not to be trusted.

 Still, even in all the pain, faith and hope are what I long for. They are elusive and difficult, but they are also the marrow, the lifeblood that help us survive. St. Jude knows this. This is why they display photos of beaming adult survivors holding pictures of themselves on their worst day. Because sometimes the worst day is the worst…but sometimes it isn’t.

 In A New Hope, Han Solo is arrogant: a self-starting egomaniac who depends on no one but himself and his furry, moaning companion, Chewbacca. Although he chooses to save himself and abandon his friends (temporarily, of course), Solo wants to comfort Luke, to say something that will help him when he faces a crisis. Like many of us, his strategies for avoiding risk and protecting himself fall away when he realizes the people he loves are in danger. He wants to believe. As Luke turns to board his X-wing fighter, Solo calls his name, and then says, with something more like wondering than conviction, “The Force be with you…?” You hear it, right? He says it like a question, as if he is uttering for the first time, Could this thing be real? Could it help? Do you believe?

I’ve never noticed it before, but earlier this month, as my nephew turned 10 and the whole world felt sad and beautiful and ugly as we battled to live only in the exact moment we embodied, Han Solo seemed to speak for all of us. I looked over at my brother, with whom I share a soul and every important instinct, and saw the tears in his eyes through my own. Our eyes wondered, together, “The Force be with you…?”

I think Solo knows what faith is like…it can be a statement, but sometimes it is a longed-for question, and it is no less powerful for being so. Only a few things remain, but faith, hope and love are among them.