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.