Lit Comforts an ALS Sufferer

Lynette Williamson


This past March Salon ran a deeply moving article by an English teacher who turned to literature when she was dying of ALS (a.k.a. Lou Gehrig’s Disease). Literature couldn’t save her, of course, but it gave her images to hold on to, no small thing when your body is abandoning you. Or as Williamson put it, “I hadn’t expected that the classic literature I’d been teaching for 30 years would define how I coped with my illness.”

The closest I’ve gotten to Williamson’s experience occurred the night after my oldest son died. Two lines from Mary Oliver’s “The Lost Children” came to me in the small hours of the night as I lay in my bed frozen in horror, and I hung on to them as though to a life raft in a hurricane.  When I examined them afterwards, I realized that their saving power lay in how much meaning was packed into a few words and a single image. I hadn’t realized until returning to the poem that it is about parents who have lost children. Deep survival instincts had taken over and given me the words that I needed.

We see those deep survival instincts at work with Williamson. First she turned to a passage from Toni Morrison’s Nobel acceptance speech:

After losing the use of my hands, it became difficult to find meaningful ways to spend my time. I despaired having no control over my life. I strove to focus on the moments of the day when I was warmed by a kind word or an image of natural beauty. When I did pause to appreciate these instances, I’d hear the words “This one is warmed . . .”

At first I was at a loss for the source of the line. I was certain it was from a Toni Morrison novel, but when I consulted Google, I was reminded that the phrase harkened from Morrison’s Nobel Prize acceptance speech. Near the conclusion of her lecture, she tells a brief story about a wagon filled with slaves journeying to a plantation where their lives will end. The driver stops at an inn for a meal, leaving the slaves shivering in the back of the wagon. Two children tend to the slaves, giving them food and sips of warm cider. Morrison sums up this respite from pain and impending hopelessness: “The next stop would be their last, but this one was warmed.” I too was nearly at my last stop — death — but pausing to appreciate the moments that were warmed by small gestures and glimpses of natural beauty dulled the pangs of despair, and I had Morrison to thank for expressing the ineffable emotions that I may have missed had it not been for her words echoing in my mind.

Her next passage was from Oedipus:

With my mobility limited and my voice diminished, I would often lie in bed and find myself bothered by ridiculous things: a shriveled leaf on a house plant or a crooked lampshade. When someone entered the room to visit, I would seek a way to ask them to correct the irritant. But if they plucked the wrong leaf or didn’t understand me at all, I would usually realize the foolishness of wasting energy on getting my way and somewhere from the recesses of my memory be reminded, “Do not seek to be master of all . . . ”

Williamson notes that the words are Creon’s, who admonishes Oedipus

for failing to learn that fate cannot be circumvented. Oedipus and I both had to learn acceptance. Although acceptance sounds like a passive stance, it would become the hardest work of my life.

I understand why Williamson would remember Creon’s words this way—she herself was in the grip of an inexorable destiny—but passage is a bit more complicated and even more appropriate. Oedipus, accustomed to command, is trying to organize his own punishment, and Creon is pushing back. Even in the depths of our crisis, we try to console ourselves that we still have some power, and in the interchange we see even this consolation taken away. The only option is to surrender entirely, and Oedipus isn’t there yet:

OEDIPUS: Do you know on what conditions I obey?
CREON: You tell me them, and I shall know them when I hear.
OEDIPUS: That you shall send me out to live away from Thebes.
CREON: That gift you must ask of the God.
OEDIPUS: But I’m now hated by the Gods.
CREON: So quickly you’ll obtain your prayer.
OEDIPUS: You consent then?
CREON: What I do not mean, I do not use to say.
OEDIPUS: Now lead me away from here.
CREON: Let go the children, then, and come.
OEDIPUS: Do not take them from me.
CREON: Do not seek to be master in everything for the things you mastered did not follow you throughout your life.

Williamson’s citation of Metamorphosis has changed the way that I see the Franz Kafka story. I now realize that it brilliantly captures what it feels like to be an invalid and a burden to others. Here’s Williamson:

Acquiescing to my fate and allowing others to do what they deemed best for my unfamiliar and uncooperative body took patience. But when my confinement to a wheelchair required dismantling my office into a bedroom, replacing my desk with a ramp and my bookcase with a portable commode, I balked. Like Kafka’s Gregor Samsa, who awakened to find himself a giant cockroach, I felt alien in appearance and among unfamiliar surroundings.

Passages such as the following take on particular power when you read them through the eyes of an ALS sufferer. Samsa is trying to get out of bed:

It was a simple matter to throw off the covers; he only had to blow himself up a little and they fell off by themselves. But it became difficult after that, especially as he was so exceptionally broad. He would have used his arms and his hands to push himself up; but instead of them he only had all those little legs continuously moving in different directions, and which he was moreover unable to control. If he wanted to bend one of them, then that was the first one that would stretch itself out; and if he finally managed to do what he wanted with that leg, all the others seemed to be set free and would move about painfully. “This is something that can’t be done in bed”, Gregor said to himself, “so don’t keep trying to do it”.

The first thing he wanted to do was get the lower part of his body out of the bed, but he had never seen this lower part, and could not imagine what it looked like; it turned out to be too hard to move; it went so slowly; and finally, almost in a frenzy, when he carelessly shoved himself forwards with all the force he could gather, he chose the wrong direction, hit hard against the lower bedpost, and learned from the burning pain he felt that the lower part of his body might well, at present, be the most sensitive.

Sophocles and Kafka may give Williamson images for her suffering, but Shakespeare comes through with what she needs at the end. From Hamlet she get a noble vision of letting go. Here’s her account:

Eventually all my inner turmoil will have to give way to complete surrender. I’m not quite there yet. But I do hear one of Hamlet’s less-famous lines spoken after most of the chaos in the play subsidies: “Let be.” Resonating in those two words is Hamlet’s acceptance: “There is special providence in the fall of a sparrow.” I pray that I may soon die accepting this lesson that’s taken a lifetime to learn.

The sparrow passage occurs immediately before the final duel. Horatio offers to forestall the fight but Hamlet is resigned to letting happen what will happen and alludes to Matthew 10:29: “But not a single sparrow can fall to the ground without your Father knowing it.” Hamlet is leaving his fate in God’s hands:

Not a whit, we defy augury: there’s a special providence in the fall of a sparrow. If it be now, ’tis not to come; if it be not to come, it will be now; if it be not now, yet it will come: the readiness is all: since no man has aught of what he leaves, what is’t to leave betimes?

The other passage—“Let be”–occurs when Hamlet is dying. He could tell the world so much if he had more time, he informs Horatio, but “this fell sergeant, death, is strict in his arrest”:

I am dead, Horatio. Wretched queen, adieu!
You that look pale and tremble at this chance,
That are but mutes or audience to this act,
Had I but time–as this fell sergeant, death,
Is strict in his arrest–O, I could tell you–
But let it be. 

A lifetime of reading provided Williamson with invaluable resources for her tragedy. She died a week after the Salon article appeared, and I pray that, at the last, she was able to let it be.

This entry was posted in Kafka (Franz), Shakespeare (William), Sophocles and tagged , , , , , , , , . Bookmark the permalink. Post a comment or leave a trackback: Trackback URL.


  • Literature is as vital to our lives as food and shelter. Stories and poems help us work through the challenges we face, from everyday irritations to loneliness, heartache, and death. Literature is meant to mix it up with life. This website explores how it does so.

    Please feel free to e-mail me [rrbates (at) smcm (dot) edu]. I would be honored to hear your thoughts and questions about literature.

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