Sparring with Emily Dickinson about the Good Life

We grow accustomed to the Dark—
When Light is put away—
As when the Neighbor holds the Lamp
To witness her Goodbye—

A Moment—We uncertain step
For newness of the night—
Then—fit our Vision to the Dark—
And meet the Road—erect—

And so of larger—Darknesses—
Those Evenings of the Brain—
When not a Moon disclose a sign—
Or Star—come out—within—

The Bravest—grope a little—
And sometimes hit a Tree
Directly in the Forehead—
But as they learn to see—

Either the Darkness alters—
Or something in the sight
Adjusts itself to Midnight—
And Life steps almost straight.

Emily Dickinson

But Emily, do we grow accustomed to the Light?

Some darkness becomes a habit, becomes something without which it’s hard to imagine living. Of course I’ve imagined life in the whole-bodied light, but never realistically – never with any weight of possibility behind it.

Light. Darkness. Which is which? The Self that I am would not even exist recognizably if she had a healthy body. I don’t think I can overstate this. Disability colors everything that makes me “me.” Family, friends, work, talents, marriage, opportunities – all are awash in my peculiar embodiment. I don’t think I’m sorry or that I resent it. I didn’t know if I would ever believe this, but, at least sometimes, I do.

Photograph by Eduard Militaru

Since I was about ten years old, my mom has not relented from conducting armchair medical research on muscular dystrophy, the disease we share but of which I received a double portion. Every doctor’s visit included questions about treatment options, medical developments, and the like. These were usually met with evasion or noncommittal answers by my habitually ill-mannered physicians. After fifteen years of avoiding what would surely mean false hope, I was sent an article by my mom this summer, detailing the moderately successful, second trial runs of a treatment that would at least halt progression of, and possibly reverse, my disease.

That was a weird moment. I acknowledge that its being a weird moment may itself seem weird to many people. What room does such news leave for ambivalence? Yet for the rest of the day I wondered: If my disability remains, will I still feel the way I feel about it now in twenty-five years?

Possibly—even probably—yes.

I’ve moved in Christian circles for a long time. The way we pray about health-related things betrays a lot. Nobody jumps into the prayer circle leading with their stubborn hearts, or their resentments, or their pride, but we all piously knit our brows over illness and suffering and deficiencies of any sort. The way we praise says a lot about us too. We testify to being “blessed” and to God being “good” when life feels pleasant and beautiful. But scroll social media with me. Wonder what kind of blessed I am when that perfect family mountain-climbing trip is wholly inaccessible. Wonder whether God is also good to the woman at home, exhausted just by the thought of leaving – or only to the woman who dresses up, goes out, and looks flawless in the picture with the caption about God’s goodness. Imagine, for a moment, a snapshot posted of me, leaning against my husband to manage the single step to a friend’s front door. Imagine my bruised knees and ego from that single step.

Now ask God with me, if he is still good – if his blessing applies to me. Ask what in the world my unreliable, unpredictable, uncontrollable life means.

Then caption me “blessed.” Recall that good means neither safe nor pleasant. Recall it a thousand times a day.

Haven’t we been told that the best and holiest things come to us as a direct result of mourning, hungering, and weeping? C. S. Lewis writes that “God whispers to us in our pleasures … but shouts in our pains.” Read Jesus’ Beatitudes in the Gospel of Luke (6:20), consider your own life, and tell me this isn’t true in a real and substantive way.

In part—I fear I will forget—given—the opportunity.

It is not a small thing to have been forced into reliance. Disability carries on a unique conversation with illusory hopes. We offer up the glaring lack of ability to contribute and the constant question of whether or not that’s okay. It rarely feels okay in a society that prizes economy, productive lives, and pulling oneself up by the bootstraps. We look around to see Westerners abort the babies they worry won’t be able to live full and healthy lives. (Is mine worth living?) Autonomous contributing is the gold standard, and dependent needing is what we do. Sure, there’s a spectrum. Many of us contribute plentifully, but it really only begins to be okay when we give more than we take. “Needing” in general really oughtn’t be above the normal and acceptable level of healthy, whole-bodied humanity.

How, then, is it possible that weakness is a gift, and a rare one – but stepping out of it would also be a gift? We pity one and celebrate the other. It would even feel wrong not to accept the gift of medicine.

People would think I had acquired an entirely new life, that suddenly I could be happy, that the Good Life had finally opened its doors to me. I resent that. I can’t tell you how much I resent that.

First, because it shirks a real responsibility humanity has to live alongside disabled people as we are. Medical intervention may feel like relief to the able-bodied because “fixing” me means less work fixing the world to welcome me. I implore you to consider carefully whether you would truly rejoice for me, for the lifting of my hardship and the lessening of my pain, or whether you would rejoice at the easing of your own discomfort in having it easier than I do, in inhabiting a world that is friendly to you and unfriendly to me. Be assured, simply changing my body would not make the world friendlier. There are plenty of other bodies, different from yours or mine, fighting to live here. Removing what exposes and highlights injustice is not the same as achieving justice.

Second, because my life wouldn’t be new. I’ve already found the Good Life. Have we really not discovered yet that it does not depend on health, wealth and success, a nuclear family and a white picket fence? The Good Life is the one fixed firmly within a story told by the Divine about a world that is broken now but not broken forever. It is to inhabit your exact place in that story, to cling tightly to it, and watch closely as it accounts for every body, every hardship, every darkness. If a healthier body looks to you like a new life or a new hope – my God, find a better hope. The material things you possess, whatever body, circumstances, abilities, or money, cannot be the world. It breaks. It is untenably fragile.

I’ve heard disability activists respond to uninterested audiences by reminding them that they are only able-bodied for now. A low blow, perhaps, but entirely accurate. A significant percentage of people become disabled at some point in life, and there is no way to know it won’t be you. Could you cope if you were me? Would things fall apart? There is a world that doesn’t fall away.

The Good Life—is not—fragile.

In the end I resolve the question of the gifts of suffering and relief all too easily. Perhaps the thing is to live fully as the Selves we are in the world we inhabit. Perhaps the Lord taketh away and the Lord giveth.

We don’t get to choose the gifts or the life we get, but we still have choices, right?

I could choose, for example, not to take a medicine that would make my body stronger. But though we make choices, our raw material is given to us. I’m used to a certain substance and situation of my life. Its limitations, dangers, and discordance feel curiously safe and concordant, as if I’ve adjusted, as if I’ve grown accustomed to the dark. How could I not? And much of growing accustomed has meant searching within the limitations to find true, good, and beautiful things. But that searching would not change with different raw material, with a new substance or situation. I would be just as reliant, just as called to simple faithfulness with what is before me. It would be perhaps a quantitative change, but not a qualitative one.

The world I’ve inhabited has been unfriendly, with little patience for a body like mine. I live in a constant rehearsal of “broken for now; not broken forever.” Perhaps one day the world will become a less desperate place. Isn’t that what we always seek? We want to bring more order, and more beauty, and more meaning to this chaos. It’s why we brush our teeth, fold our laundry, and sweep our floors. We go for a run. We have hard conversations. We eat regular meals. We marry, have children, and gather at holidays. We join churches, feed hungry people, and vote in elections. We read, create, and travel. In all of these things we encounter darkness, and we push back darkness, and we live alongside darkness, and we hope for less darkness. And the darkness always teaches us things: what it’s not supposed to be like, what we aren’t in control of, and what can’t give meaning to life. Despite every medicine and all our best efforts, it will always be there – until all the darkness is driven out even from our own hearts.

If a healthier body looks to you like a new life or a new hope – my God, find a better hope.

In the face of pain, sufferers tend either to despair or to seek a viable path forward by creating some alternate world. For example, some cope by embracing the inspirational, ever cheerful persona that makes the people around them much more comfortable: “Life is only as bad as you make it! Suffering isn’t the problem, our attitude toward it is!” With all due respect: bullshit. Similarly, for whatever reason, suffering can also become more bearable when we have some person or the whole society to blame for it. What looks like brokenness we interpret as purely mistreatment: “I know my life is good, so if it feels bad, it must be somebody’s fault and thus, fixable.” In this way we can spend our time trying to fix it, and thus replace grief and shame with anger and indignation.

There is a lot to respect and learn from these efforts: Of course my response to things I can’t change matters. Of course injustice compounds suffering and deserves opposition. Yet I can’t find ultimate hope in these. What they have of truth is not enough for me.

I find I must build my hope on something much larger and different entirely.

Paul claims he is resolved to know nothing except Christ and him crucified, but few people in fact have nothing except Christ and him crucified. To be sure, I’ve never had nothing: I have always had plenty. But what I’ve never had was a hope of anything like a success story, or self-actualization, or the American Dream. The manifold meanings of life primarily on offer in this day and age aren’t on offer to me. I don’t have the beauty, or the autonomy, or the stamina for it.

We sometimes try to fit the elderly, disabled, needy, and suffering into our twisted, shallow, and foolishly optimistic visions of the world, but of course it doesn’t work. It doesn’t work because sufferers, the ones fallen or falling apart, are outposts of a different sort of world.

I inhabit a world that is not how it should be, but will one day be remade. My pain is not dismissed; my hope is neither false nor shallow. Creation groans, yet it thrills with a hope that can hold both the heights and the depths of my life. This world will be remade to such an extent as to even redeem and give meaning and glory to the suffering of the present moment.

So, I suppose, we grow accustomed to the Light. We remember the darkness was never home; it only ever pointed the way. That it points is a grace; that it is not itself the Light is also a grace.

We let it point—and we walk—toward the Light.