Behold, I make all things new.
-The Book of Revelation

We are not only permitted but required to believe that cosmic time as we know it, through all the immensity of its geological ages and historical epochs, is only a shadow of true time, and this world only a shadow of the fuller, richer, more substantial, more glorious creation that God intends; and to believe also that all of nature is a shattered mirror of divine beauty, still full of light, but riven by darkness.
-David Bentley Hart, The Doors of the Sea: Where Was God in the Tsunami?


On the edge of winter, as I sit with Ronan on the couch as the sun sets, darkness arriving earlier each day, I feel an odd yet familiar sensation in my chest. A sinking weight and a slow opening in the same moment. My heart feels like a flowering stone, rock-like and hard, but petaled and colorful, shedding one shape for another, each beat a sudden motion signaling the shift, jarring but tender. I think, whoever or whatever you are – some God, some being – fuck you, I’m finished with you. I wonder how a broken heart looks when it grips: does it go purple with effort? Shrink like an oyster squirted with lemon before it’s gobbled up? Do the valves go all wonky? Does the heart change? When explaining why we’ve made this or that decision we say I’ve had a change of heart. In the Bible God hardened Pharaoh’s heart as well as the hearts of the Israelites (and both for plot-driven, narrative purposes). A line from a Madonna song – open your heart to me, baby – that I used to prance around singing in junior high. We say my heart goes out to you as if we can connect to another heart via sonar or organ telepathy. Heartbreak: this clutch in the chest that gapes – tenacious like faith, but it lacks the comfort and clarity that faith is intended to provide. What gives?

I may have chucked my old, personal visions of God, but I respect people who go on believing in God when confronted with horrible truths; this is, we’re told, the essence of faith, and it doesn’t have to be doubtless or mindless, and it doesn’t necessarily mean a passive acceptance of shitty, heart-wrenching situations. People who believe in God are not stupid, although it’s often difficult to parse that out when you hear the so-called representatives of Christianity – who seem to be carefully selected by news networks for maximum controversy – spouting their provocative and often lazy theological perspectives. Bad theology abounds, sadly, but this is (or should be) different from the thoughtful theology of people of faith. I’ve never thought that faith was stupid, or the stuff of fools, or the opium of the masses. Yes, it’s often presented that way in public discourse – easy solutions offered up as made-for-television answers for overwhelmingly complicated problems – but writers as smart and bad-ass as Dostoevsky, Atwood, O’Connor (to name a few) and others, living and dead, have been concerned with faith. What it is, how to find and keep it, how one withstands the testing of it, and what the point of having it might be in the first place. Comfort? Salvation? Unique conversational fodder for a cocktail party? Which brings every theologian – and every person who lives long enough – to the point of pondering that Job-ish moment of the testing. In a word: suffering. Evil. The unthinkable. Where is God? People ask in times of great distress and calamity, which is another way of asking Where am I, Who am I? and Why?

Who could believe in a God that would allow natural disasters stretching from the 1755 Lisbon earthquake to the more recent Tsunami? The massive earthquake in China? The very recent earthquake in Turkey? All the hurricanes and storms that ravage and destroy? On a (literally) more molecular level, and for me, obviously, a personal one, how can a person believe in a God that would allow the existence of Tay-Sachs, a disease that would certainly be a major contender for the title of Most Evil Disease if such awards existed. Well, a Christian would believe, Hart argues, and he endeavors to explain why this is so.

Evil, evil, evil. I want to get to the bottom of it, and it has nothing to do with a sharp-toothed and mischievous red demon with ears and a tail, muscular thighs and a supercilious grin. (My dad used to dress up as the devil for church Halloween parties, arguing that the best way to mess with Satan is to laugh at him. Meanwhile, my brother and I hovered over the punch bowl, horrified by the sight of our father in red tights and a leotard.) As a subject of inquiry, evil is a good topic to choose as a theologian if you want to stay in business because it’s a problem that isn’t going away. Evil isn’t trendy. It’s pervasive and odorless as lethal gas and it exists in miniscule, almost undetectable ways as well as obvious, mammoth ways: from the person who, with malicious intent, makes a snide comment to a friend or acquaintance or stranger, to the serial killer who searches for his latest victim with cunning and rage. Most disturbing, perhaps, to us modern folk, is “evil” that arises from nature: floods, earthquakes, tsunamis, tornados, disease. Aren’t we supposed to have a handle on all that nature stuff, us with our big brains and fancy scientific theories and tools and technological advancements and genetic testing and walks and races and funds for the cure for this, that, or the other disease? If God is the creator of the world, what does it say about Him/Her/It if the world is riddled with such suffering and blight? Where is God for the suffering heart, the grieving parent, the dying soldier, the innocent civilian caught in a lethal crossfire? For the children whose parents are swept away in a wave of water? For the father whose child is trapped under rubble? Where is God in these images of hell? Invoking presence through absence? Lurking outside the frame, waiting for a moral version of Luminol to make him/it/her visible?

I asked my beloved college professor Ed Santurri to recommend books by contemporary theologians who address the problem of God and human suffering. This is how I discovered The Doors of the Sea: Where Was God in the Tsunami by David Bentley Hart, a muscle-y, slightly conservative but fascinating explication of various theological interpretations of evil. Hart doesn’t care if he offends people (and his patristic vision is, at some points and for this reader, quite limiting), but he’s no dummy, and he uses the whole machine of his mind and all the strength of his heart to try and make sense of suffering in this world, or at least hammer to a pulp (intellectually, that is) those who use punitive theology to explain natural disaster or disease or any other random bit of evil that befalls individuals or families or countries. There’s a brain behind his babble; the book is an impassioned response to those who reacted to the tsunami with theology Hart found wrong-headed, cruel, and morally insipid. His commentary would not generate a salacious headline that “those people deserved it for sinning against God! See what happens when you don’t believe!” might, but it’s worth reading and considering. If only there were more thinkers like Hart weighing in on this issue of suffering and what it’s about (so much) and what it’s for (if anything).

Hart first picks apart the determinist position that casts God as little more than a “clock-maker” – an automaton that created the world and allows its wheels to turn round and round, wholly indifferent to any outcome or result. The problem here, argues Hart, is the presumption that God can be understood to be like us; operating from this misunderstanding generates skewed expectations about what a creator does or doesn’t do. Any good God worth His salt (no female God for Hart, it turns out), wouldn’t bother mucking around in the same bodily forms that His finite beings are forced to inhabit and eventually die in. An apathetic God is not an uncaring God. Apatheia, or apathy, is a kind of detachment that, far from being analogous with not caring, simply suggests that there’s no reason to care. God does not have feelings. God is not emotionally reactive, Hart argues, or God can’t be God. But haven’t we been told that “God so loved the world that he sent his only son?” Isn’t that an ultimate expression of emotion? No, Hart argues, we’re simply misunderstanding the nature of God’s love, which IS apathy. If you’re going to argue for omnipotence, you can’t have a depressed God feeling forlorn in heaven. In other words, God can’t be the master of the universe and also be emotionally available. God is not your shrink.

This definition of apathy is interesting, but it’s a strain to match it up with disasters like the Tsunami, 9/11, Hurricane Katrina, and all of the small horrors that we never hear about and that unfold all over the world, every day. Meanwhile, I dream of writing a book that traces the Tay-Sachs gene to the very first moment of its mutation, its first appearance, its inaugural, snarling curtain call. Like Daniel Mendelsohn, who, in his epic and profound memoir, The Lost, leads the reader up to the very final moments of his relatives’ lives in the second World War, I want to see the beginnings of the incident that created the gene that will create the final moments of Ronan’s life, and all the moments leading up to it. All this grief and terror and sadness that grips at us each day. I feel this great need to know what’s at the bottom of this evil, insidious disease that nobody and no modern science can fix. I lie awake at night, dreaming of enzymes, as if they were desserts or basketballs, something I could give to my son. Ronan is missing a single enzyme, and it’s killing him. There must be a brainy, ambitious scientist somewhere who can create it and just give it to him, right? Wrong.

I’m not the only one in this situation, wondering why or how or why not or other questions indicative of magical thinking. Why does a young woman die of cancer after being in remission, leaving behind a husband and small child? Why does a young man in his early 40s die of a ridiculous illness that could hardly be diagnosed, let alone cured? Interesting to note that the need to ask these questions is, according to Hart, a uniquely Christian query if we presuppose that at its heart, Christianity seeks justice, works for goodness, wants people to be happy, cared for, and safe. (Please note: no mention here of being rich, famous, or one with a life/body/house/spouse/job to envy according to social standards/movies/Cosmopolitan and W magazine articles). This is a different view of happiness, and one that incorporates an understanding of evil without getting completely on its side. And although Hart’s project is about making sense of the senseless, he does admit that “pious platitudes and words of comfort seem not only futile and banal, but almost blasphemous: metaphysical disputes that come perilously close to mocking the dead. There are moments, simply said, when we probably ought not to speak. But, of course, we must speak.”

Yes, we must speak. But let’s not be assholes when we do.

Responses to disasters, individual or collective, according to Hart, spring less from a desire to shed moral light in a dark place, and more from the desire to reiterate one’s beliefs or stories, to cast aside one’s fears and sorrows. In other words, it’s selfish. “Just believe in Ronan’s higher purpose.” “You can choose to see this as the unfolding of his life.” “God only gives us what we can handle.” “Inside of every cloud is a silver lining.” Here is just a sampling of the advice I receive, none of which speaks to true suffering or anguish, and all of which makes me want to punch people. The inability to even grope for a better answer is something I cannot tolerate. Saying you don’t know why or you feel sad or angry is better than saying what you could find written inside any sympathy card in most drugstores or woven into a cross-stitch in your grandmother’s bathroom. Many people weigh in on my private disaster, and most of the time for their own sake and not for mine, not for Ronan’s. The theodicy that lays claim to the “great chain of being” or “the intelligent design” into which all situations, joyous or horrendous, fit, is completely absurd. Thank you, David Hart, for pointing this out. Maybe I’ll start handing out copies of your book at Trader Joe’s and Whole Foods. Groping, I think, is better than preaching.

Disasters big and small, private and epic, Hart asserts, teach us nothing: nothing about the world, nothing about God, nothing about our own finitude. They are simply disasters. That said, he is able to hold forth on how mass human suffering is not understood (as in, explained) so much as touched upon in the texts of the Judeo-Christian tradition. He also makes clear the difference between extracting meaning and making sense of a situation. If that doesn’t make sense, read on. And he means “meaning” with a small “m,” not some existential curtain that can be brought down on the whole world order, condemning it to Hell (which is covered in another part of the book).

Hart believes that when people who say, see? See? How could the God you believe in be a good God if he allows THAT? – without bothering to fully understand what it is Christians believe:

“It seems a curious delusion – but apparently it is one shared by a great number of the more passionate secularists – to imagine that Christianity has never at any point during the two millennia of its intellectual tradition considered the problem of evil, or confronted the reality of suffering and death, or at any rate responded to these things with any subtlety: that Christians have down through the centuries simply failed to notice every single instance of flood, earthquake or tempest, pestilence, famine, or fire, war, genocide, or slaughter; or that every Christian who has been crippled, or has contracted a terminal illness, or has watched his wife die of cancer, or has stood at the graveside of his child has somehow remained inexplicably insensible to the depths of his own pain and to the dark moral and metaphysical enigmas haunting every moment of his grief.”

Good point. The main problem is that this kind of blame-thinking posits God incorrectly as “a finite ethical agent.” This isn’t logically sound, Hart argues. You can’t view God as omnipotent and all-powerful and then expect God to “agree” to arrange your life in a happily ordered way that is to your liking. God can’t be your life coach or party planner. Sorry. An omnipotent, from-the-beginning God cannot adapt his “make people happy” strategies for each new decade or century or Recession. A farmer in the 15th century wanted something different than the modern CEO living in a city of millions of people. God doesn’t change. Otherwise, God can’t be God. Thus, the emotionless nature of his love. God is infinite, the end and the beginning of all, and “unless indeed one can fathom infinite wisdom, one can draw no conclusions from finite experience regarding the coincidence in God of omnipotence and perfect goodness. One may still hate God for wordly suffering, if one chooses, or deny him, but one cannot in this way “disprove” him. “

It’s tempting, Hart agrees, to ignore those that claim God’s nonexistence by using material proof of disasters, cancers, murders, etc., but according to Hart, arguments that at first glance seem atheist, are unmasked to reveal something far more interesting: the presumption that the world should be just and good, which, again, is a notion (Hart claims), that is deeply rooted in the Judeo-Christian tradition:

“At the heart of such unbelief lies an undoubtedly authentic moral horror before the sheer extravagance of worldly misery, a kind of rage for justice, a refusal of easy comfort, and an unwillingness to be reconciled to evil that no one who believes this is a fallen world should want to disparage. For the secret irony pervading these arguments is that they would never have occurred to consciences that had not in some profound way been shaped by the moral universe of a Christian culture.”

Our moral universe certainly seems depraved these days, but I think Hart is on to something. Was my raging at God over Ronan’s condition proof that God actually existed, because my questioning presupposed that there SHOULD be some sort of larger goodness at work, or some force of goodness that I could conceive of, and how could I have imagined God in the first place if God didn’t exist? Was that Descartes? (Turns out it was.) I studied St. Anselm in college, and I vaguely remembered the smooth black cover of the book, his name written in a blue cursive scroll, but I couldn’t remember the details of his ontological argument, through which he hoped to prove the existence of God. I asked Ed Santurri again:

On Anselm’s “ontological argument,” I would say the argument is one has not properly understood the concept of God if one denies God’s existence. By definition God is a being greater than which none can be conceived. A being who has necessary existence is greater than a being who exists just contingently or not at all. So if you deny God’s existence, you are contradicting yourself since a being that didn’t exist or might not exist is not a being “greater than which none can be conceived.” A being greater than which none can be conceived must exist necessarily; otherwise you aren’t talking about the greatest conceivable. A being than which none greater can be conceived is by definition one that must exist necessarily (and not contingently or simply in the mind). Ergo God exists. This is commonly regarded as the strongest version of Anselm’s ontological argument (Actually the term “ontological argument” is Kant’s phrase in referring to a variation on Anselm’s argument (as I recall he doesn’t mention Anselm) or rather another version of that argument [not the one I describe here]. But subsequent commentators use the phrase “ontological argument” to designate any versions of Anselm’s argument that move apriori from the concept or meaning of God to an affirmation of God’s existence.

Hmmm…So God cannot be blamed for disaster and also be transcendent. We can’t be pissed off at God, as I have been, and then claim that God doesn’t exist. (Uh-oh.) God’s sheer unknowability (which, again, is what makes God God), means that we cannot expect God to move in ways we humans have determined, according to our own categories, as moral or good. In other words, God doesn’t make moral or immoral choices, because God isn’t in the business of making any choices at all, as God is beyond categories that we could imagine. (Remember, it was a bunch of dudes in Nicea, not God, who in the year 325 decided on the Triune God, the categories of the Father, the Son, and the Holy Spirit.) I like this reasoning, because it wipes away the “I prayed and God saved me” logic that people so often believe in after they’ve experienced a narrow escape from some tragedy or disease. Sorry, folks, but God isn’t up there, waiting to hear your pleas for help in a storm. God isn’t up anywhere; God is God. The rest of what happens to you is chance, but that doesn’t mean the world is without mystery – or, and most importantly from Hart’s perspective – without moments of grace. It’s complicated, I fear, and as much as my head understands it, my heart is not there yet.

Just as it’s easy to point at a dying baby and say, “God doesn’t exist if God allows this,” it’s equally troublesome to assume that a dying baby has some kind of purpose in God’s grand scheme of things. Again, Hart criticizes such an “odd, bland metaphysical optimism” of “things happen for a reason.” I’m reminded of people who have suggested to me that it’s too bad I didn’t give “the Secret” a closer read when I was pregnant, as if the Tay-Sachs gene would have just hopped right off of Ronan’s DNA strand, and mine, or others who now recommend an examination of my chakras, which must be out of whack if such suffering has befallen me. This, what Hart would call a “post-theist” view, is alive and well in Santa Fe, where you can re-route your brain waves or journey into your past lives or retrieve pieces of your soul or smudge and chant away bad energy (for a hefty fee, of course). It’s shoved under the “new-age” umbrella, but it’s more “old-age” – archaic and silly. It’s not even properly atheist (which I’m sure the members of the men’s healing drum circle will be disappointed to hear), because it presumes that things can be put right, made new, returned to wholeness, and Christianity, in its best modulations, is a quest for wholeness, the longing for a reconciled world, an ardent desire to mend some breach that has been created by humankind’s inability not to sin. In an “elliptical way,” as Hart would say, the proud atheist honors the Christian God:

“It is Christianity that not only proclaimed a God of infinite goodness but equated that goodness with infinite love. The atheist who argues from worldly suffering, even crudely, against belief in a God both benevolent and omnipotent is still someone whose moral expectations of God – and moral disappointments – have been shaped at the deepest level by the language of Christian faith.”

Hart criticizes all of the preachers, from so-called fundamentalists to Calvin ministers, who would claim that the tsunami or other disasters can be understood as instruments of God’s will. These pundits are, he says, guilty of a “noxious pathology” and “sadistic bellowing.” Hart knows how to fling a brainy insult.

Tay-Sachs is not the tsunami, but it is certainly catastrophic in the lives of families with affected children. The origin story of the Tay-Sachs gene itself is rooted in violence and persecution. Jews living in hostile environs were shuffled off into neighborhoods, forced to intermarry, their worlds kept small. The gene is happily mutating on its own, in all kinds of populations all over the world, but it began in this manner, as a product of cruelty, bigotry, violence, evil, forced separation and isolation. Can goodness come out of impossibly bad situations? Of course, says Hart, that’s the function of grace, but this idea that there is a “single will working all things,” including finite things, is absurd, according to Hart, and reeks of a simple-minded determinism he finds morally and intellectually offensive, even repulsive, making God into just will, into “brute event.” He goes on:

“If it gives us comfort to believe that the death of an infant from disease and the death of a serial murderer late in life from a heart attack, congenital madness and innate genius, the long fortunate life of one of nature’s Romans and the brief miserable life of a born pauper are all determined by a precise calculation of what each and every one of us deserves, then it is a comfort sustained by absurdity.”

He backs up this thinking with Biblical proof, citing passages from Luke and Matthew when Jesus tells the disciples that there exists no “secret due proportion between misfortune and culpability,” and, also, that a righteous man who labors all day will get no more wages than a righteous man who labors for five minutes, a parable that basically sums up this truth about life: that it isn’t fair.

So, no divine calculus. No way to fully balance the scales. It is impossible to say that the death of a child or any other instant of heartbreak is an “expression of divine justice.” A blindly benevolent God does not dole out cures and good wishes or answer petitions like a magical wizard behind a curtain. God is not Zeus-like, flinging down thunderbolts from the sky at those who have offended him, exacting damages from their lives via natural disasters or other calamities. According to Hart, the world that Jesus was trying to usher in was one in which suffering was pointless, meaningless, and purposeless, and he suffered in order to try and bring it about. A world where life finally would be fair and suffering would be eradicated. But it isn’t yet; in the meantime, people suffer. What to do?

Everyone wants to be transformed by suffering, because everyone wants to be transformed into something they’re not yet but might be in the future. On the “Moon Minute” program on local Santa Fe radio, I heard a woman discussing the different “moon stages” and the ways in which people are shedding previous habits and ways of being, trying to break particular “behavioral trajectories” and break free into orbits of their own making. We want to think of suffering as something to muscle through, and we want there to be a light, some “good thing” at the end of the dark tunnel: a career advancement, a prize, love, recognition, whatever. We say to one another “you deserve this,” and “you deserve that.” Nobody wants to hear that we don’t deserve anything, not really, and that part of being an adult is understanding that life is, like those laborers’ wages in the Biblical parable, radically unfair. Sadly, many people never learn this lesson, which is why it often seems like the world is full of adults acting like children, and a phenomena that reality television has been too quick to document and mirror back to us, although none of us wants to see ourselves in their petty outcries, their dopey dilemmas. But if we look closely enough, there we are. As Dostoevsky wrote in The Brothers Karamazov: As a general rule, people, even the wicked, are much more naïve and simple-hearted than we suppose. And we ourselves are, too.

So if God cannot be all-knowing and transcendent –which Hart ardently believes – and also spend time rolling dice across “the board game of life” or answering prayers like a genie responding to a rubbed lamp and deciding which wish to grant, what does God do? God just exists being God, pretty much, or at least according to Hart. God is so immense, so unfathomable, that we cannot know why things happen the way they do. We can postulate, and pray, and weep and gnash our teeth, and go to talk therapy and drown our wonderings and sorrows in buckets of whiskey, but it doesn’t change the fact that nobody knows. The phrase “things happen for a reason” feels full of the same ego with which I once flung myself into the world, believing that I (little me, all on my own) could change it. Nothing happens for a reason. Things just happen, bad things, in both invisible and calculable ways. “The human propensity for malice should be no less a scandal to the conscience of the metaphysical optimist than the most violent convulsions of the physical world,” and “Unde hoc malum – Whence is this evil? And what sort of God permits it?”

It is Ivan Karamazov, reluctant hero, who asks this question in Dostoevsky’s epic novel. Our human, finite, limited minds, “bound to the conditions of time and space,” cannot unravel the absurd brutality of the suffering of children; this is Ivan’s reason for rejecting creation. It is an abomination of moral integrity, he argues, to say that the final healing of the world – God’s eternal salvation at work, making all things new, the whole point of redemption – would somehow make sense of the suffering of innocents. They will be saved, he’s told, but Ivan rejects “anything that would involve such a rescue – anything that would make the suffering of children meaningful or necessary.” He rejects salvation. A harmony where the suffering makes sense and is made to fit the equation is an eschatological vision he wants no part in. A world made new and whole in some promised salvific future “is not worth the tears of that one tortured child.” The price of one suffering creature is too high. Ivan’s rejection of God (brilliantly recounted by Hart) is “a grim, unremitting, remorseless recitation of the stories about the torture and murder of (principally) children.” These were true stories Dostoevsky unearthed in the press and through other sources, his own version of Law and Order’s infamous tagline, “ripped from the headlines.”

Hart: “Ivan’s ability to imagine a genuinely moral revolt against God’s creative and redemptive order has a kind of nocturnal grandeur about it, a Promethean or Romantic or Gnostic audacity that dares to imagine some spark dwelling in the human soul that is higher and purer than the God who governs this world; and, in that very way, his argument carries within itself an echo of the gospels vertiginous anunciation of our freedom from the ‘elements’ of the world and from the power of the law.” It is faith that saves us, and according to Ivan’s understanding, Christ was the ultimate rebel, mucking up the old world order and claiming that everyone had a place in the new one he was charged with ushering in. Instead of an atheist, a philosophical Christian? Maybe.

Part of the problem, according to Hart, is that in our “advanced” world, we believe we can outsmart nature, and outsmarting it is certainly encouraged. We applaud advances in treatments for medical conditions, steps toward a cure for various cancer and other potentially terminal illnesses. All of these things are positive, of course, but they also create within us distinct illusions. Maybe that’s why we seem so inordinately shocked when nature gets the better of us, because “we are free to romanticize or sentimentalize (nature), or even weave a veil of empty and unthreatening sanctity around it – until the moment when age, disease, infirmity, or random violence suddenly defeats us, or fire, flood, tempest, volcanic eruption, or earthquake surprises us by vaulting past our defenses.” Nature becomes, in these cases, “sheer fact.” We like to enjoy nature, get into the woods, experience it – we don’t like to think we’ll be victims of its brutal economy of life and death. The idea that “tragedy strikes” certainly makes for excellent headlines, but such a statement speaks to our expectations that avoiding calamity is possible, and this is a uniquely modern assumption. Why do we constantly say that people are “robbed” of life when they die young, that it’s such a “waste?” Why can’t they just be what they were, and not what they might have been?

Natural theology (looking at the world to “find” God), does not prove or disprove the existence of God, and does little to advance our understanding of evil. “What sort of craftsman, after all, do the internal mechanisms of nature declare?” Certainly beauty, splendor, a kind of transcendent peace, but “At that same time, all the loveliness of the natural world is everywhere attended – and, indeed, preserved – by death.” I love the beetles that waddle bravely across the arroyo path near my house, their smooth black bodies rocking back and forth, looking purposeful and eager. I have also seen those same beetles on their backs, dead, being hustled away by a party of ants to their huge anthill near the Yucca street crosswalk. The God of natural theology is a creator and a destroyer. The face of God is visible in war as well as in a flower. People don’t want to hear this, Hart points out, but there it is.

That said, the suffering and death that stem from war, according to Hart’s vision of Christianity, lack any ultimate value or spiritual meaning. Instead they are “cosmic contingencies, ontological shadows, intrinsically devoid of substance or purpose, however much God may – under the conditions of a fallen order – make them the occasions for accomplishing his good ends.” Part of the shadow world, where evil is a scandal and an offense, and equally so the suffering of children. To say otherwise is to have a banal confidence in that kind of theodicy that Hart so abhors.

So, if God doesn’t make choices as he is not subject to the same laws the govern human choice – namely, that one course of action cancels out the possibility of another, which is, in fact, the very nature of making a choice – then what is God doing? Well, Hart reiterates, being goodness in the fullest, most terrifying sense: goodness that holds everything within itself without judgment or care. God’s will is not governed by anything other than his own infinite goodness, it is not directive, it does not choose – either to grant wishes (prayers) or to subject people to Job-ish like trials and calamities.

Here’s the reason that God can’t be evil, Hart argues: If evil is born in the will, and God has no will but to the fulfillment of God’s will, than he cannot have created evil, which is, in fact, understood by Christianity as a privation of the good. A lack, an “ontological wasting disease.” This reminded me of Tay-Sachs, the slow fade it exacts in children – evil if anything is.

But here’s a question: if Ronan lacks the cognitive refinement to understand that he has a will at all, let alone exercise it, then does it follow that he can never know or understand or be evil? If evil is a turning away from God, a turning away from light and into the privation of nothingness, of non-being, then is Ronan just exempt from all this thinking? Tay-Sachs is an instrument, in my mind, of evil. It destroys, eats away, and from the moment a child is born with it, they are in fact being forced back into that state of nothingness that Hart describes. In a word: death. But Ronan is not Tay-Sachs. He is a full human being who is sick with a fatal illness. Is he a victim? Certainly. But is he victimized? Not really. It’s confusing. Where is God in Tay-Sachs? He’s there, Hart would say, but there’s no way to quantify it, understand it, or make sense of it. Enter faith. Sigh. It’s a nice vision; I just wish I could believe it.

Christianity is predicated on a fixed God and a fixed salvation, so Hart’s thinking has very real limitations for those who are nonbelievers like me, but it’s refreshing to see a devout, conservative Christian, lay out these theological precepts and (mis) understandings in a delicate and nuanced way. His is a Christianity that seeks to explain, not exclude, which is a far different enterprise than much of the Christian “theology” coming from the mouths of “experts” on television. Like this:

“The Christian should see two realities at once, one world (as it were) within another: one the world as we all know it, in all its beauty and terror, grandeur and dreariness, delight and anguish; and the other the world in its first and ultimate truth, not simply “nature” but “creation,” an endless sea of glory, radiant with the beauty of God in every part, innocent of all violence. To see in this way is to rejoice and mourn at once, to regard the world as a mirror of infinite beauty, but as glimpsed through the veil of death; it is to see creation in chains, but beautiful as in the beginning of days.”

Hart reiterates here that the cross was meant to symbolize the overthrow of death, not a sado-masochistic delight in the gory details of that suffering. The cross is not a “validation” of pain and death, but the overthrow of both. This is important. A Christian must believe in a fallen world, where sin as alienation from God, and an unavoidable one according to our human nature (original sin, etc.). A Hart-like Christian believes that people will emerge from the darkness of this age, that God has “Willed his good in creatures from eternity and will bring it to pass, despite their rebellion, by so ordering al things toward his goodness that even evil (which he does not cause) becomes an occasion of the operations of grace.” Here he makes a distinction between providence and pure determinism. At the root of any desire – even the desire for suicide – is the longing to return to some ultimate, infinite source of all things. Hell, in this vision, is a heart that cannot yield to love. Therefore, it cannot be a product of God.

So does God permit evil? No, not exactly, although he doesn’t not permit it. The restoration of the world cannot rest on the suffering of children. There would be no scales to balance out such an innately unequal equation; there would always be a remainder. Tay-Sachs children suffer, and they die, all within the span of 2-5 years. I feel with Ivan in The Brothers Karamazov, translated into a question by Hart: “Is not this an evil so immense and irreconcilable that it is fixed in the heart of eternity, an everlasting indictment of divine mercy and refutation of divine justice?”

According to Hart, this is where faith, again, is absolutely required. To believe that the world is good, or that there are moments of grace, even if we never see them, even if they never come to fruition. Dostoevsky himself didn’t see a lot of grace. After a difficult, lonely life, he was forced to endure a mock execution and then sent off to Siberia in chains. After surviving this exile he wrote feverishly, but he was haunted and crazed as much as his writing was brilliant and prolific, and he finally experienced a small measure of peace with his second wife before he died. This is the quick biography. I wonder what little moments of his life were graceful, sparks of love, ones that either do or don’t appear in his books, many of which we may never know, in-depth biography aside. Hart says that “to believe in the infinite goodness of being, one must be able to see it; and this no mere argument can bring about.” Did Dostoevsky get there? Can any parent who has lost their child expect to?

We can attach reason to things and say it is part of some plan – in Hart’s understanding, a reaching of all creation to grace, the willing of things to infinite goodness – and also refuse the other trap that says “All things happen for a reason” so go ahead and accept it. No. Hart’s argument is much more nuanced and thoughtful and intellectually interesting than this. Yes, we can say, “it’s all part of a plan,” but consider:

“There is, of course, some comfort to be derived from the thought that everything that occurs at the level of secondary causality – in nature or history – is governed not only by a transcendent providence but by a universal teleology that makes every instance of pain and loss an indispensable moment in a grand scheme whose ultimate synthesis will justify all things. But one should consider the price at which that comfort is purchased: it requires us to believe in and love a God whose good ends will be realized not only in spite of – but entirely by way of – every cruelty, every fortuitous misery, every catastrophe, every betrayal, every sin the world has ever known; it requires us to believe in the eternal spiritual necessity of a child dying an agonizing death from diphtheria, of a young mother ravaged by cancer, of tens of thousands of Asians swallowed in an instant by the sea, of millions murdered in death camps and gulags and forced famines (and so on). It is a strange thing indeed to seek peace in a universe rendered morally intelligible at the cost of a God rendered morally loathsome.”

Too right. At the end of his book, Hart talks about watching a man telling reporters the names of his lost children who died in the tsunami when he is suddenly overcome with weeping. Only a “moral cretin” would assure a grieving parent that the loss of a child is part of God’s grand design, part of ultimate meaning, or what the universe meant to do, if only this sobbing parent could truly consider what was going on. “Most of us would be ashamed to speak such words; we would recognize that they offer no more credible comfort than the vaporings of the most idiotically complacent theodicy, and we would detest ourselves for giving voice to odious banalities and blasphemous flippancies.” Oh, I like him I like him very much. Because that’s what people do, and they do it all the time.

We can hate suffering and love God, Hart assures us, but do his arguments translate from the intellectual level to the level of the heart? I’m not so sure. It’s possible that my anger at God, my desire for accountability, springs from a quintessentially Christian view of the world that makes specific assumptions about goodness. Maybe. But it doesn’t solve the problem of the heart, and how that is made new, if at all. Hearts grow weary, they break, and I don’t know – then what?

The world is a horrific place, everyone agrees, and yet we still try to find good in it. This is our task. As Hart says, we must speak, and we can speak to the good without offering excuses for the bad. I’ve always wondered if that’s why Abraham, in the famous Biblical story, is asked to sacrifice Isaac – is it not so much to prove his faith in God as it is in the world. Faith that something – wind, being startled by a hungry goat, a spasm in his hand – might have stayed the knife? A world that would never be the same to him after he’d acted in such a way? Hart might agree, because belief in God and belief in the world are not, he argues, necessarily the same thing. This is a relief to me.

It’s been a cold weekend in Santa Fe, fall moving to winter, flashes of sun through a lower-than-usual sky, and I’m enjoying a piece of sweet Chantilly cake from Whole Foods, feeding Ronan pinky fingers full of frosting. Sunday memories from autumn childhoods: the afternoons a blur of sleepy light, top 40 countdowns on the radio, the whistle of freight trains, dogs barking into the cold, still air. When the sun sinks a bit lower we’ll go for our sunset walk toward the mountains that are dotted in yellow and white from the changing leaves and the new snow. I’ll make a weed bouquet for Ronan’s stroller. And I’ll think about all those mothers and fathers of kids all over the world – so many of them, so much suffering – who know or have known or will know how I feel now, how I’ll feel tomorrow, how I’ll feel forever. We are all walking together under the same invisible net. I know and they know that losing a child gradually or suddenly – however, whenever – and then making the choice to go on is to enter each remaining day of one’s life by walking carefully down a steep set of unlit, winding stairs into some new unknown. That shadow world bumping up against the other one that may – or may not – have specks of light. Grief and gratitude right next to one another. Cosmic or not, time is passing and things are changing and Ronan is dying. No reasons, no answers, no apologetics. Just another seal on another baby day. Just a slow descent; this is the only act of faith I have, and it signals no choice, it only is.

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EMILY RAPP is the author of Poster Child: A Memoir. A former Fulbright scholar, she was educated at Harvard University, Saint Olaf College, Trinity College-Dublin, and the University of Texas at Austin, where she was a James A. Michener Fellow. She has received awards and recognition for her work from the Atlantic Monthly, the Mary Roberts Rinehart Foundation, the Jentel Arts Foundation, the Corporation of Yaddo, the Fine Arts Work Center in Provincetown, and the Valparaiso Foundation. She was the Philip Roth Writer-in-Residence at Bucknell University and has received a Rona Jaffe Writers’ Award. Her work has appeared or is forthcoming in the Los Angeles Times, Salon, The Sun, The Bark, The Texas Observer, Body & Soul, Good Housekeeping, and many other publications. She has taught writing in the MFA program at Antioch University-Los Angeles, where she was a Core Faculty member, UCLA Extension, the University of California-Riverside Palm Desert Graduate Program, the Taos Writers' Workshop, and the Gotham Writers' Workshops. She is currently professor of Creative Writing and Literature at the Santa Fe University of Art & Design in Santa Fe, New Mexico. She is currently at work on a novel and a new memoir, Dear Dr. Frankenstein, which chronicles her life with her infant son, who is dying of Tay-Sachs disease. Excerpts from the book can be found at http://ourlittleseal.wordpress.com and you can visit her at www.emilyrapp.com.

35 responses to “Where is God in Tay-Sachs? The Shadow World and a New (or New-ish) World Order”

  1. Another weighty essay on an important topic. Thanks for your insights on good and evil, God and catastrophe, and your lovely writing.

  2. Zara Potts says:

    Another thought provoking piece, Emily.
    Having been lucky enough to escape realitively uninjured in the February earthquake in Christchurch this year – I wondered (along with most of my fellow New Zealander’s) about the existence,or not, of any kind of deity in this so-called ‘Act of God.’
    It was troublesome to me that a city in which I lived, a city that I loved, could fall in upon itself and kill so many people, young and old, just going about their lunchtime business.
    Many people were asking, ‘Where was God?’ The best answer I heard was from the Bishop of the destoyed cathedral who said: ‘The act of God was not the earthquake. The Act of God was in the response of the people.”
    Though I am not a religious person, his words struck a chord within me.
    The Act of God is the support and help and care and love of strangers helping strangers, neighbours helping neighbours, loved ones grieving with you and offering their hearts, hands and love.
    The Act of God, I believe, is loving one another.

    • Emily Rapp says:


      Wow. Thanks for sharing this. It’s so strange, because my friend and I were just having a conversation about belief last night over duck fat french fries (of all things), and we both decided that we believe in people, in love, and that this seems like both too much and yet not enough. But yes, love. It’s all we have. And stories.

  3. This was absolutely stunningly beautiful and moving. Thank you. I have much to say and nothing at all. It’s like you summed it up perfectly. I just want everyone to read this. If the act of god is in the response of the people as Zara writes above, your response is full of godliness…

    • Emily Rapp says:

      godliness, yes! I agree, Jennifer!

      • I just read your comment to Zara about love– which makes me think of two things. One that really the only teaching Jesus did was about love, which is entirely radical and was at the time. And that it’s where grace comes from. Then the radical nature of how he tried to alleviate pain. Then about Angela Carter who was rather radical too and also espoused a notion of love in her writing and love being the place of radical change. All of which is disparate stuff, I know….

        But I am still struck by the way you write of love and grace in the face of tragedy. I came to whatever religious belief I have through sadness and disappointment and loss, because in faith is some kind of leavening. This is not like I think god listens to me and not that I think the sadness and disappointment will be any less, but that there is something moving in faith, and also something radically human and fallible in Christianity. Which here sounds nonsensical but that you wrote beautifully about. I’ve sent your essay to a ton of people…

  4. Any words I try to write in response feel weightless compared to yours. A stunning piece, Emily.

  5. You have a rare courage to write essays like this one. As with previous pieces of yours I’ve admired, you bring a monumental depth to these pages.

    The particular absurdity of statements like “God only gives us what we can handle” does its best to strain a thinking person’s faith. In my own hike through theology, I have never, despite questions and immovable doubt, been able to completely abandon belief in God, a listener to prayers and the unjust presence of divine grace. As you say so well, I don’t stop looking for the good amidst the horrific place that is the world.

    “We are all walking together under the same invisible net.” Amazing, unbelievable, this writing of yours.

    Thank you.

    • Emily Rapp says:


      I love the idea of a hike through theology — it’s like a hike through life, and we’re all on the same hill, only we forget to look around and see who else is there. So much of what you’ve said her resonates with me. Thanks for responding.

  6. […] here to read a new essay on The Nervous Breakdown website today: evil, Tay-Sachs, my dad in red tights. […]

  7. Emily I love every word you write. You can see beyond, see within and share your emotions like no one else can.

  8. donna kuhn says:

    i did not know the connection between tay sachs and persection. it has often been asked where was god in the holocaust. the loss of a child, i do not want you to join this club. mine was sudden; i don’t know which is worse.

  9. NTSAD Mother says:

    Emily, as a mother who has lost a child to one of these horrible diseases, I can’t not expresse the comfort and peace that I have received because of my faith in God. In a sense, I almost feel sorry for you. You are very bitter about all of this… and you use very eloquant words to describe your bitterness. But unfortunantly, I do not think you will ever have peace in your situation unless you look at the bigger picture. Yes it is painful as a mother to see your child dying. I have been there I know. Yes, it is painful watching your child be lowered into the dirt. I have been there, I know! Nothing about theses diseases are fair. But the one thing that I do know is that because of my child, many, many people have came to faith because of my child. They have realized the importance of knowing God. They (and myself) became closer to God in all of this. Maybe you will call it a cry for help, or a fake systematic way of releasing our fears. But in many cases (and I know I am not the only NTSAD mother who feels this way) our faith in God has brought us through all of this. I am at peace with the death of my daughter. I know that I WILL see her again one day. I can’t imagine not knowing God, but in the back of my mind wondering if my child went to heaven, and knowning that I am not going to go there when I die. Even if it were not for my faith, I would honestly still believe in God and follow his ways if it meant that I am possibly able to see my child again in paradise. Sorry to bust your bubble on your post, I am just very upset by all of this.

    • Amy Monticello says:

      “And although Hart’s project is about making sense of the senseless, he does admit that “pious platitudes and words of comfort seem not only futile and banal, but almost blasphemous: metaphysical disputes that come perilously close to mocking the dead. There are moments, simply said, when we probably ought not to speak.”

      I think you’re misreading much of Rapp’s essay, which has led you to make the kind of insensitive, judgmental, mocking comment that reveals much more about your inability to see “the bigger picture” than it does Rapp’s. This entire piece is about looking at the bigger picture, in all its confusing complexities, seeming contradictions, and unknowable truths. I hear defensiveness in your words, NTSAD Mother, and wonder if Rapp’s personal, intellectual, and theological mining have challenged the easy story you tell yourself of your daughter’s death in order to make sense of it. But I’d encourage you to begin mining the implications of your own response, rather than offering the “futile and banal” answers that I’m not convinced have worked for you.

  10. Krissy says:

    Your writing is beautiful and thought-provoking. I went through a time when my children were suffering from evil inflicted upon them in horrible ways, and I, too, wanted to understand how there could be a God if he would allow such evil. I’m glad that, in my search, I didn’t read Hart’s book–how depressing and unhelpful. At least, that’s how it seems to me. I highly, highly, highly recommend that you read Greg Boyd’s “Is God to Blame?”

  11. Serena says:

    a very intellectual approach to dealing with something that I can only imagine is (whatever this means literally) heart-wrenching. my heart feels wrenched after reading your post – I can only begin to understand on the most miniscule of levels what you’re going through. i will squeeze my two babes today in your honour. keep feeding frosting – those are the little joys we can share!

  12. Paul Canady says:

    Thank you for your writing. As an Episcopal priest, I shudder when people make those asinine comments like “God will only give you what you can handle.” While there is some bit of truth in it, it’s not what people in your situation need or want to hear.

    What I know from reading your work is this: You love Ronan, and everyone who comes across your story will learn something from that. And that is where God is in Tay-Sachs. That doesn’t mean it isn’t awful (it is!) or miserable. And whether you consider yourself a believer or not (and I can’t blame you if your not), God is with you.

    I pray for peace and comfort for Ronan, Rick and you each day.

  13. Richard Levine says:

    What a powerful, thought provoking & emotional piece. It is certainly sparking an inner debate of whether or not I tabled such a query years ago when I almost lost my daughter to Kawasaki’s Disease or when I was diagnosed with cancer (now a ten year survivor) because I am not that cerebral. Not that I don’t want to be, it’s just that I have a tendency to be lazy. Perhaps it’s my ADD that causes the complexity of an issue to be interpreted as something above my payscale. Yet there is something about your style of writing that encouraged me to read it from top to bottom. In the past I would simply fall back on the book of Job to justify it all and to carry on. Perhaps, that’s just the easy way out (saving the neurons for something less challenging) But then again….
    Thanks for sharing. With your permission, I will do the same.

  14. Nancy says:

    Thank you for this essay. Today this was like a long, cool, drink of water to a very parched person. I have never made it through one of your entries without tears (and some smiles, as well).

  15. Shoshana Hershkowitz says:

    I think about you and your beautiful son every day. As you’ve so eloquently written, there’s truly nothing anyone can say to make this right, and so I can only say that I care.

  16. Another stunning piece, Emily. As you poignantly underscore in many ways, there is so much we don’t know.

    Thank you so much for attempting to unravel the strands of God and faith and religion and noting they can be interwoven but that they’re not synonyms. I’ve always thought rigid atheists are the mirror image of what they purport to disavow: their absolute certainty in no God brings them as much comfort as those who insist God helped them sell their car on Craigslist.

    I interviewed someone recently who insisted I keep her age off the record, because she doesn’t want to draw attention to the fact she’s in her sixties. (Despite the fact she’s famous and everyone knows her age.) She’s healthy and alive and too fucking stupid to realize she’s lucky on both counts.

    I’m glad you fed Ronan frosting from your pinkie. May there be as many of those days ahead as possible.

    Thinking of you and Ronan and your family, Emily.

  17. angela says:

    Still digesting but WOW.

  18. Megan says:

    Having lost our first born son, Benjamin to SMA, and then having a little boy with 22q deletion there have been many times I have questioned God. Who is he? Does he really exist? However I can’t believe that Ben’s life here on earth, be it much too short, is all there is for him. And I can’t believe that for some reason God gave me two children with two completely different disease’s/syndromes because “he’ll only give you what you can handle..and not everyone could handle what you’ve had to deal with”. Fuck that! Instead I focus on the wonderful and amazing people I have come to know through these two separate illnesses. I now know that a simple hug speaks louder when there really are NO words to say when someone has lost a child, or a loved one. So instead of saying a few stupid words that I know they’ve heard time and time again in their time of loss…I hold them.

    So I have decided to believe that yes, there IS a God. If even only for selfish reasons. I must believe.

    Thank you Emily, for sharing your words, your life, your Ronan. (hugs).

  19. Holly Peterson says:

    ((((( googleplex parentheses here((((((( hugs)))))))) another googleplex on this side)))))))). I’ve had that book on my bedside reading list for a couple of years. I think I’ll read it now. Thank you for sharing this with us.

  20. George Hunka says:

    A lovely essay that requires re-reading. I was reminded of this, from Arthur Schopenhauer, atheist extraordinaire, on a world without future and the compassion that is our due to others:

    “In fact, the conviction that the world and man is something that had better not have been, is of a kind to fill us with indulgence towards one another. Nay, from this point of view, we might well consider the proper form of address to be, not Monsieur, Sir, mein Herr , but my fellow-sufferer, Socî malorum, compagnon de miseres ! This may perhaps sound strange, but it is in keeping with the facts; it puts others in a right light; and it reminds us of that which is after all the most necessary thing in life — the tolerance, patience, regard, and love of neighbor, of which everyone stands in need, and which, therefore, every man owes to his fellow.”

  21. Emily, you keep raising the bar. I have never met anyone who, in the midst of her/his own pain and the incredibly complex and isolating individuality of that experience, has struggled so mightily with the larger questions of the world and with the place of her own experience amid the vastness of history/mystery/eternity/the divine. It’s difficult, knowing you and reading your work, not to wish that everyone facing grief and loss might aim to grapple so hard . . . although I know we all have hugely different responses to tragedy, and that there is no one “right” way to grieve, to feel, to exist in a world that’s so simultaneously full of beauty and pain.

    As you know, I grew up Catholic, and despite having left the church in my teens, I continued to have faith, in a non-denominational context, all the way through my early 30s. I progressed from seeing myself as a Catholic, to a Christian, to a Deist, to a spiritual agnostic, and finally, in my mid-30s, came to terms with the fact that I had become a fairly convinced atheist. I tell my daughters frequently that being a non-believer is no more “proof” that god does not exist than being a believer is proof that s/he does. These are simply unknowable questions (although I myself have come to believe that they are deeply human-generated questions: that we grapple with whether or not god exists largely because we have been told through centuries of human stories that he does, rather than out of any other particular reason/empirical evidence/logic that would lead us to postulate a god at all). I haven’t read with nearly the theological scope that you have, but I do think that one of the things I take away from this post is that many great thinkers have maintained faith, and that belief is not synonymous–as it can sometimes seem to be in the contemporary United States–with facile dogma and judgments intended to make the believer feel better by excluding/alienating someone else.

    NTSAD Mom makes me really sad. First of all, I’m sad for her that she lost her daughter, which is a horrible thing to face no matter what faith or philosophy or friendships or other loves might sustain you. The truth is, an experience like that can change you and rattle you to a degree that those of us who haven’t had a similar experience are in no position to judge. But I have to say that I still find it shocking and beyond depressing that someone who knows first hand the kind of pain you’re in over your child’s illness would find it necessary to get on a comments board and have a hissy fit of snark, displaying a disconcerting lack of compassion and a distinctly un-Christian (in its true philosophical sense) desire to somehow “burst your bubble” (WHAT bubble? That happy, giddy bubble of having a dying child?!) by pronouncing that she’s going to be with her daughter in paradise while you’re off to H-E-double-hockey-sticks for daring to think and question. Wow. I mean, wow. I guess there is always someone out there just jumping up and down to prove that walking through the fire of pain and loss doesn’t always cause people to emerge as wiser or more compassionate towards others. Which in an interesting way, is precisely one point you’ve made in your writing–and that Sasha Hemon made in his great “Acquarium” piece in the New Yorker: that there is nothing an experience like this has to “teach” anyone; that there is no silver lining or anything you would ever have wanted to learn. There is just loss, just pain, just people and who they fundamentally are and how they fundamentally meet the world. I guess if having a dead child made a person “noble,” that given the wide scope of tragedy in human history, we would have been far more evolved as a species by now. Flu epidemics and genocides would have caused a vast elevation of human nature . . . and perhaps that would even be obscene in its own ironic way? Who wants to grow/evolve as a species on the backs of dead children? Maybe it is better that loss guarantees no special wisdom.

    But this is why I am even more impressed by your grappling, your kindness and generosity of spirit, your hunger for knowledge and the passion of your questions. Because there is nothing “inherent” about losing Ronan (or any child) to a brutal disease (or about getting cancer or losing a leg or living through a war) that MAKES a person wise or profound. The people to whom such awful things happen run the same gamut as the people to whom they do not. And yet you ARE simply a beautiful, wise, brilliant woman, who feels things with a depth that floors me, who is more curious about the world than just about anyone I have ever known, and whose friendship I feel incredibly lucky to have found. Though I am not a big fan of talking about “spirituality,” you embody much of the best of what it would mean to me if I were a seeker of it. Thanks for this profoundly questioning and loving piece, and just being who you are in the world, especially the exact kind of fierce mother Ronan deserves.

    • Erin Boyle says:

      I expect, too, that when I finally have it all figured out I’ll have to call myself a fairly convinced atheist. But then I read how Emily is in fact proving herself to be the “exact kind of fierce mother Ronan deserves” and find myself thinking “he was given to Emily for a reason”, whoever being in charge of such things surely knowing that Emily will do right by Ronan. Hmph. Do people have this reflexive (?) reaction for the purpose of comforting themselves? There was a blog written by a young-ish man who knew he was going to die an untimely death, and he left a letter for his loved ones to read after he’d passed on. He said he was comfortable going knowing that there may in fact not be something, someone waiting for him on the other side, and I thought that was one of the most brave things I’d ever heard a human say. I hate the now-cliche “It is what it is” but maybe that’s all there is to say, maybe there are no answers, ’cause wouldn’t we know them by now? Maybe we have to “make stuff up” to some extent not just ’cause we don’t know what God is or isn’t but maybe there is nothing to know, it is what it is? Maybe that’s too frightening for many people to think about?

      • Krissy says:

        Maybe people have that kind of reaction as a means of comforting themselves, but maybe for some it is because they believe in God but have either misunderstood or been misled by what many churches teach about the nature of God. They think that if God is all-good and all-powerful, then EVERYTHING must happen for a God-given reason, even things that seem unfathomably wrong, or even evil, to us. But that is actually not at all the story that is told in the Bible.

        Jesus says, “Anyone who has seen me has seen the Father.” John 14:9. The author of Hebrews writes, “The Son is the radiance of God’s glory and the exact representation of his being…” (Hebrews 1:3). So the Bible teaches that our understanding of God should always be informed first and foremost by who Jesus has showed God to be. When Jesus comes across people who are hurting and sick, does he EVER say anything like, “Oh, well, it’s God’s will for you to be sick. You don’t understand it, but you know, it’s all for a reason. So good luck with that!” NO! Jesus HEALS them. Period.

        The Bible teaches that there is a battle being waged in this world against the forces of evil. We are not capable of understanding everything that is going on–it is beyond what we see and what we know–but we ARE capable of fighting against it. I am convinced that when Jesus looks at Ronan, his heart is overwhelmed by love for that beautiful little boy. I am also convinced that he weeps and mourns for Ronan and all who love him. When Emily loves Ronan as she does–beautifully, fiercely–I believe she is joining with Jesus in the fight against evil. In the darkest of circumstances, she is fighting with love.

  22. […] inspirations for The Elf King, offers a consideration of some of the same issues in her new essay, “Where is God in Tay-Sachs? The Shadow World and a New (or New-ish) World Order,” published last week at The Nervous Breakdown. The conclusion of the […]

  23. Jessica Blau says:

    Wow. This is beautiful and stunning and heartbreaking.

  24. Lorna says:

    Thank you Emily for contributing something as valuable as this to the world while going through such heartbreak. Humans have a desperate need to find meaning and purpose in everything, even when none exists. We can’t help it, finding patterns is a singular human trait that has led us to many wonderful things such as science, but with the side effect of many false positives–superstition.

    Also, the next time someone makes the comment “you should have read The Secret more!” punch that asshole in the nose. Justifiable self defense.

  25. Michelle says:

    Your essay moved me too much to coherently comment right now. I must think more to make sense in any comment, but I wanted to thank you for such a moving, valuable piece.

    I am just 6 months out of treatment for breast cancer, and as a mother to two little girls, have grappled for months with much the same issues you write about here. I want to point out that I do not compare our two experiences though, Emily, because – as a mother – I realized the huge difference between facing one’s own mortality and facing your child’s.

    My heart does indeed reach out to yours, I could feel yours breaking from your gorgeously heart-wrenching prose. Ronan is forever in my thoughts. Kiss him, lots. I hope that fierce, unending, wholly good love for your child, that, is God.

  26. Kvalítní repasovaný notebook, repasované notebooky zlín…

    […]Emily Rapp | Where is God in Tay-Sachs? The Shadow World and a New (or New-ish) World Order | The Nervous Breakdown[…]…

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