12 Rules for Life: An Antidote to Chaos (49 page)

It’s been harder with my daughter. As her disease progressed, I began to piggy-back her around (not on my shoulders) when we went for walks. She started taking oral naproxen and methotrexate, the latter a powerful chemotherapy agent. She had a number of cortisol injections (wrists, shoulders, ankles, elbows, knees, hips, fingers, toes and tendons), all under general anaesthetic. This helped temporarily, but her decline continued. One day Tammy took Mikhaila to the zoo. She pushed her around in a wheelchair.

That was not a good day.

Her rheumatologist suggested prednisone, a corticosteroid, long used to fight inflammation. But prednisone has many side effects, not
the least of which is severe facial swelling. It wasn’t clear that this was better than the arthritis, not for a little girl. Fortunately, if that is the right word, the rheumatologist told us of a new drug. It had been used previously, but only on adults. So Mikhaila became the first Canadian child to receive etanercept, a “biological” specifically designed for autoimmune diseases. Tammy accidentally administered ten times the recommended dose the first few injections. Poof! Mikhaila was fixed. A few weeks after the trip to the zoo, she was zipping around, playing little league soccer. Tammy spent all summer just watching her run.

We wanted Mikhaila to control as much of her life as she could. She had always been strongly motivated by money. One day we found her outside, surrounded by the books of her early childhood, selling them to passersby. I sat her down one evening and told her that I would give her fifty dollars if she could do the injection herself. She was eight. She struggled for thirty-five minutes, holding the needle close to her thigh. Then she did it. Next time I paid her twenty dollars, but only gave her ten minutes. Then it was ten dollars, and five minutes. We stayed at ten for quite a while. It was a bargain.

After a few years, Mikhaila became completely symptom-free. The rheumatologist suggested that we start weaning her off her medications. Some children grow out of JIA when they hit puberty. No one knows why. She began to take methotrexate in pill form, instead of injecting it. Things were good for four years. Then, one day, her elbow started to ache. We took her back to the hospital. “You only have one actively arthritic joint,” said the rheumatologist’s assistant. It wasn’t “only.” Two isn’t much more than one, but one is a lot more than zero. One meant she hadn’t grown out of her arthritis, despite the hiatus. The news demolished her for a month, but she was still in dance class and playing ball games with her friends on the street in front of our house.

The rheumatologist had some more unpleasant things to say the next September, when Mikhaila started grade eleven. An MRI revealed joint deterioration at the hip. She told Mikhaila, “Your hip will have to be replaced before you turn thirty.” Perhaps the damage had been done, before the etanercept worked its miracle? We didn’t know. It was ominous news. One day, a few weeks after, Mikhaila was playing ball
hockey in her high school gym. Her hip locked up. She had to hobble off the court. It started to hurt more and more. The rheumatologist said, “Some of your femur appears to be dead. You don’t need a hip replacement when you’re thirty. You need one now.”

As I sat with my client—as she discussed her husband’s advancing illness—we discussed the fragility of life, the catastrophe of existence, and the sense of nihilism evoked by the spectre of death. I started with my thoughts about my son. She had asked, like everyone in her situation, “Why my husband? Why me? Why this?” My realization of the tight interlinking between vulnerability and Being was the best answer I had for her. I told her an old Jewish story, which I believe is part of the commentary on the Torah. It begins with a question, structured like a Zen koan.
Imagine a Being who is omniscient, omnipresent, and omnipotent. What does such a Being lack?
²¹¹
The answer?
Limitation
.

If you are already everything, everywhere, always, there is nowhere to go and nothing to be. Everything that could be already is, and everything that could happen already has. And it is for this reason, so the story goes, that God created man. No limitation, no story. No story, no Being. That idea has helped me deal with the terrible fragility of Being. It helped my client, too. I don’t want to overstate the significance of this. I don’t want to claim that this somehow makes it all OK. She still faced the cancer afflicting her husband, just as I still faced my daughter’s terrible illness. But there’s something to be said for recognizing that existence and limitation are inextricably linked.

Though thirty spokes may form the wheel,

it is the hole within the hub

which gives the wheel utility.

It is not the clay the potter throws,

which gives the pot its usefulness,

but the space within the shape,

from which the pot is made.

Without a door, the room cannot be entered,

and without its windows it is dark

Such is the utility of non-existence.
²¹²

A realization of this sort emerged more recently, in the pop culture world, during the evolution of the DC Comics cultural icon Superman. Superman was created in 1938 by Jerry Siegel and Joe Shuster. In the beginning, he could move cars, trains and even ships. He could run faster than a locomotive. He could “leap over tall buildings in a single bound.” As he developed over the next four decades, however, Superman’s power began to expand. By the late sixties, he could fly faster than light. He had super-hearing and X-ray vision. He could blast heat-rays from his eyes. He could freeze objects and generate hurricanes with his breath. He could move entire planets. Nuclear blasts didn’t faze him. And, if he did get hurt, somehow, he would immediately heal. Superman became invulnerable.

Then a strange thing happened. He got boring. The more amazing his abilities became, the harder it was to think up interesting things for him to do. DC first overcame this problem in the 1940s. Superman became vulnerable to the radiation produced by kryptonite, a material remnant of his shattered home planet. Eventually, more than two dozen variants emerged. Green kryptonite weakened Superman. In sufficient dosage, it could even kill him. Red caused him to behave strangely. Red-green caused him to mutate (he once grew a third eye in the back of his head).

Other techniques were necessary to keep Superman’s story compelling. In 1976, he was scheduled to battle Spiderman. It was the first superhero cross-over between Stan Lee’s upstart Marvel Comics, with its less idealized characters, and DC, the owner of Superman and Batman. But Marvel had to augment Spiderman’s powers for the battle to remain plausible. That broke the rules of the game. Spiderman is Spiderman because he has the powers of a spider. If he is suddenly granted any old power, he’s not Spiderman. The plot falls apart.

By the 1980s, Superman was suffering from terminal deus ex machina—a Latin term meaning “god from a machine.” The term described the rescue of the imperilled hero in ancient Greek and Romans plays by the sudden and miraculous appearance of an all-powerful god. In badly written stories, to this very day, a character in trouble can be saved or a failing plot redeemed by a bit of implausible
magic or other chicanery not in keeping with the reader’s reasonable expectations. Sometimes Marvel Comics, for example, saves a failing story in exactly this manner. Lifeguard, for example, is an X-Man character who can develop whatever power is necessary to save a life. He’s very handy to have around. Other examples abound in popular culture. At the end of Stephen King’s
The Stand
, for example (spoiler alert), God Himself destroys the novel’s evil characters. The entire ninth season (1985–86) of the primetime soap
Dallas
was later revealed as a dream. Fans object to such things, and rightly so. They’ve been ripped off. People following a story are willing to suspend disbelief as long as the limitations making the story possible are coherent and consistent. Writers, for their part, agree to abide by their initial decisions. When writers cheat, fans get annoyed. They want to toss the book in the fireplace, and throw a brick through the TV.

And that became Superman’s problem: he developed powers so extreme that he could “deus” himself out of anything, at any time. In consequence, in the 1980s, the franchise nearly died. Artist-writer John Byrne successfully rebooted it, rewriting Superman, retaining his biography, but depriving him of many of his new powers. He could no longer lift planets, or shrug off an H-bomb. He also became dependent on the sun for his power, like a reverse vampire. He gained some reasonable limitations. A superhero who can do anything turns out to be no hero at all. He’s nothing specific, so he’s nothing. He has nothing to strive against, so he can’t be admirable.
Being of any reasonable sort appears to require limitation
. Perhaps this is because Being requires Becoming, perhaps, as well as mere static existence—and to become is to become something more, or at least something different. That is only possible for something limited.

Fair enough.

But what about the suffering caused by such limits? Perhaps the limits required by Being are so extreme that the whole project should just be scrapped. Dostoevsky expresses this idea very clearly in the voice of the protagonist of
Notes from Underground
: “So you see, you can say anything about world history—anything and everything that the most morbid imagination can think up. Except one thing, that is.
It cannot be said that world history is reasonable. The word sticks in one’s throat.”
²¹³
Goethe’s Mephistopheles, the adversary of Being, announces his opposition explicitly to God’s creation in
Faust
, as we have seen. Years later, Goethe wrote
Faust, Part II
. He has the Devil repeat his credo, in a slightly different form, just to hammer home the point:
²¹⁴

Gone, to sheer Nothing, past with null made one!

What matters our creative endless toil,

When, at a snatch, oblivion ends the coil?

“It is by-gone”—How shall this riddle run?

As good as if things never had begun,

Yet circle back, existence to possess:

I’d rather have Eternal Emptiness.

Anyone can understand such words, when a dream collapses, a marriage ends, or a family member is struck down by a devastating disease. How can reality be structured so unbearably? How can this be?

Perhaps, as the Columbine boys suggested (see Rule 6), it would be better not to be at all. Perhaps it would be even better if there was no Being at all. But people who come to the former conclusion are flirting with suicide, and those who come to the latter with something worse, something truly monstrous. They’re consorting with the idea of the destruction of everything. They are toying with genocide—and worse. Even the darkest regions have still darker corners. And what is truly horrifying is that such conclusions are understandable, maybe even inevitable—although not inevitably acted upon. What is a reasonable person to think when faced, for example, with a suffering child? Is it not precisely the reasonable person, the compassionate person, who would find such thoughts occupying his mind? How could a good God allow such a world as this to exist?

Logical they might be. Understandable, they might be. But there is a terrible catch to such conclusions. Acts undertaken in keeping with them (if not the thoughts themselves) inevitably serve to make a bad situation even worse. Hating life, despising life—even for the genuine
pain that life inflicts—merely serves to make life itself worse, unbearably worse. There is no genuine protest in that. There is no goodness in that, only the desire to produce suffering, for the sake of suffering. That is the very essence of evil. People who come to that kind of thinking are one step from total mayhem. Sometimes they merely lack the tools. Sometimes, like Stalin, they have their finger on the nuclear button.

But is there any coherent alternative, given the self-evident horrors of existence? Can Being itself, with its malarial mosquitoes, child soldiers and degenerative neurological diseases, truly be justified? I’m not sure I could have formulated a proper answer to such a question in the nineteenth century, before the totalitarian horrors of the twentieth were monstrously perpetrated on millions of people. I don’t know that it’s possible to understand why such doubts are morally impermissible without the fact of the Holocaust and the Stalinist purges and Mao’s catastrophic Great Leap Forward.
²¹⁵
And I also don’t think it is possible to answer the question by
thinking
. Thinking leads inexorably to the abyss. It did not work for Tolstoy. It might not even have worked for Nietzsche, who arguably thought more clearly about such things than anyone in history. But if it is not thinking that can be relied upon in the direst of situations, what is left? Thought, after all, is the highest of human achievements, is it not?

Perhaps not.

Something supersedes thinking, despite its truly awesome power. When existence reveals itself as existentially intolerable, thinking collapses in on itself. In such situations—in the depths—it’s
noticing
, not thinking, that does the trick. Perhaps you might start by noticing this: when you love someone,
it’s not despite their limitations. It’s because of their limitations
. Of course, it’s complicated. You don’t have to be in love with every shortcoming, and merely accept. You shouldn’t stop trying to make life better, or let suffering just be. But there appear to be limits on the path to improvement beyond which we might not want to go, lest we sacrifice our humanity itself. Of course, it’s one thing to say, “Being requires limitation,” and then to go about happily, when the sun is shining and your father is free of Alzheimer’s disease and your kids are healthy and your marriage happy. But when things go wrong?