The girl in the bubble
Lately, a troubling situation has been occurring with some regularity. Many of my friends, enduring trials and suffering of their own, explicitly downplay the seriousness of those situations in recounting them to me. They use phrases that are meant to acknowledge the profundity and difference of what we have endured this year; that acknowledgment, I appreciate. But somehow, it ends with me feeling set apart from my friends, rather than drawn together. That separation, I do not appreciate.
For example, a few days ago, while I sat and waited in one of many parking lots, a friend came over to the window to share her joy about our upcoming trip to Lourdes. I said how excited I felt, how unreal it all seems, and a comment about how I’ve been struggling with prayer and faith this year. “It’s been a year” is a refrain I throw around a lot; I threw it in here. She answered that she also feels like God has been testing her this year and calling her to grow in her faith. And then instantly appended, “But nothing like what you’ve been through.”
This is a woman whose family has had an unexpected baby, multiple moves, and a child requiring surgery in the last several months.
Nothing like!
***
For my part, I have (until now!) been reluctant to share the truth of how hard this year has been, even when people ask. This is, in part, because during one of Oscar’s inpatient stays, we were in the same hospital at the same time with two of my friends, each there with their young daughters, both of whom are fighting cancer.
I felt ridiculous at the time asking for prayers for Oscar when these girls are fighting for their lives.
Just mysterious epilepsy. Not cancer!
***
Are there levels (or perhaps varying depths) of suffering? I absolutely think so. None of us have ever endured the agony of suffering that Christ Himself endured. So if ours is less than His, then mine or yours or Oscar’s can certainly be more or less than any other human’s. The pain of childbirth is worse than the pain of stubbing a toe. So I think the notion that some suffering is more profound than other suffering is not, in and of itself, a problematic notion. The fact of it is true.
What is problematic, though, is allowing that “hierarchy” of suffering (for lack of a better word) to come between us. Our family’s trial this year should not, does not constitute a pedestal. I am no more or less holy than I was a year ago at this time. And that’s not what my friend was suggesting. But just as celebrations bring people flocking to share in others’ joy, I wish suffering could, as a rule, unite rather than separate us.
C.S. Lewis described pain as “anxiety that gnaws like fire and loneliness that spreads out like a desert.” Myself, I experience it as living inside a vast empty bubble.
The word compassion literally means to suffer with (com = with, passion = suffer). The Greek word that gets translated as “compassion” in the Bible is splagchnizomai, which literally means “moved to the bowels.” To put it more plainly, compassion is the sick, breathless feeling you may get, as if punched in the gut, when you see a pitiable fate befall another person. Their suffering and pain becomes yours in a visceral way, in every sense of that word:
1: felt in or as if in the internal organs of the body : deep <a visceral conviction>
2: not intellectual : instinctive, unreasoning <visceral drives>
3: dealing with crude or elemental emotions : earthy <a visceral novel>
Sometimes, though, it is easy for our compassion to get sidetracked into something closer to pity. This can mean pity for ourselves, for the sufferer, or pity for others, for those looking into the glass box from the outside. And sometimes, at least in my case, compassion can even get sidetracked into pride. “I thank thee, God, that I am not like other men.” It is easy — even encouraged, both by secular culture and by prosperity gospel — to assume that things are going well in my life because of my own right actions. As if somehow the blessings that have come to me are earned and deserved, not freely given.
This common experience is felt in the tsk-tsking of tongues, the sad head-tilt, and the uncomfortable silence that often comes in response to an honest answer about Oscar’s progress. Phrases such as “I could never do that” and “I’m so thankful for my healthy children” reinforce those feelings of distance, of being set apart to live inside a bubble. And I even do this myself, in comparing Oscar’s medical situation to those of other “sicker” kids (to say nothing of greater suffering elsewhere in the world!), and feeling unworthy of mercy and support as a result.
In the essay Welcome to Holland, the author describes a child’s special needs diagnosis as akin to preparing for and embarking upon a vacation to Italy, only to find they have been diverted permanently to Holland. While all their friends are still over there enjoying Italy!
I am acutely aware of my new citizenship in Holland these days. I am meeting and befriending lots of Dutch, navigating the maze of unfamiliar streets without a map. But is it any wonder I feel isolated from my friends in Italy, even when they call to chat long-distance? Is it any wonder that I miss their close companionship? Or that I feel disoriented at the thought of building an entirely new, Holland-centric social network that by definition excludes so many of the people who have supported our family through every twist and turn, up to now?
In everyday interactions, my friends and relations are clearly moved by our story and Oscar’s journey. Then why lately, in so many cases (like the ones above), where suffering was clearly present on both sides, did I feel that suffering was the thing dividing me from my friends, rather than uniting us? If some suffering is greater than other suffering, does this mean that some suffering is more compassion-worthy than another? No. All suffering, even trivial, is worthy of compassion. As Simcha Fisher once put it, God dries all tears, even first world tears. And creating, labeling, and reinforcing hierarchies of suffering is one of the things that creates separation and builds bubbles.
What is good in any painful experience is, for the sufferer, his submission to the will of God, and, for the spectators, the compassion aroused and the acts of mercy to which it leads.
– C.S. Lewis, The Problem of Pain
We are called to look with what Fr. Michael Gaitley calls “the merciful gaze,” to put on the eyes of Christ and see our suffering brothers and sisters, and be moved (to our bowels!). Moved not just to pity but to action. Christ’s call is always first and foremost a call to relationship, with Him and by extension with our brothers and sisters united in Him. Just as we are called to accompany Him on His road to Calvary, metaphysically and spiritually, we are called as Christians to accompany suffering wherever we see it, of any degree, physically and materially. The merciful gaze rightly leads to mercy in action. Our identification with Christ’s great Passion on the cross should help us to identify tiny replicas of that passion in the world around us.
I commiserated with another friend whose family had a medical crisis this month, mentioning how I have PTSD after every hospital visit. She replied that it had given her “just a glimpse of your world this past year.” Her child was sped to the hospital in a screaming ambulance while police questioned her family, looking for (absent!) evidence of child abuse. This she called “just” a glimpse of suffering.
I appreciated so much that she took the time to acknowledge me in the midst of her own trauma. She extrapolated from her own situation, imagined ours, and reached out to say she thought of us — what a rare gift. But how I also wish she had not used that qualifier “just,” or continued “I’m not sure I’d still be able to function.” She did function, in that awful moment. The glimpse was so, so real. And I wish she (and you all!) knew that she is just as strong as I am, that I am just as weak as she is, that I am no different on the inside of the bubble than I was on the outside.
The hard truth is that we do live in Holland now. We do live in a bit of a bubble. But some words and actions reinforce that bubble, while others allow us to see through, reach through, or even step through for a visit.
In my next post, I will share some ideas about how to support families in times of crisis, especially families living with chronic, ongoing needs.