The idea that life is suffering is a tenet, in one form or another, of every major religious doctrine, as we have already discussed. Buddhists state it directly. Christians illustrate it with the cross. Jews commemorate the suffering endured over centuries. Such reasoning universally characterizes the great creeds, because human beings are intrinsically fragile. We can be damaged, even broken, emotionally and physically, and we are all subject to the depredations of aging and loss. This is a dismal set of facts, and it is reasonable to wonder how we can expect to thrive and be happy (or even to want to exist, sometimes) under such conditions.
I was speaking recently with a client whose husband had been engaging in a successful battle with cancer for an agonizing period of five years. They had both held up remarkably and courageously over this period. However, he fell prey to the tendency of that dread condition to metastasize and, in consequence, had been given very little time to live. It is perhaps hardest to hear terrible news like this when you are still in the fragile post‑recovery state that occurs after dealing successfully with previous bad news. Tragedy at such a time seems particularly unfair. It is the sort of thing that can make you distrust even hope itself. It’s frequently sufficient to cause genuine trauma. My client and I discussed a number of issues, some philosophical and abstract, some more concrete. I shared with her some of the thoughts that I had developed about the whys and wherefores of human vulnerability.
When my son, Julian, was about three, he was particularly cute. He’s twenty years older than that now, but still quite cute (a compliment I’m sure he’ll particularly enjoy reading). Because of him, I thought a lot about the fragility of small children. A three‑year‑old is easily damaged. Dogs can bite him. Cars can hit him. Mean kids can push him over. He can get sick (and sometimes did). Julian was prone to high fevers and the delirium they sometimes produce. Sometimes I had to take him into the shower with me and cool him off when he was hallucinating, or even fighting with me, in his feverish state. There are few things that make it harder to accept the fundamental limitations of human existence than a sick child.
Mikhaila, a year and a few months older than Julian, also had her problems. When she was two, I would lift her up on my shoulders and carry her around. Kids enjoy that. Afterwards, however, when I put her feet back on the ground, she would sit down and cry. So, I stopped doing it. That seemed to be the end of the problem–with a seemingly minor exception. My wife, Tammy, told me that something was wrong with Mikhaila’s gait. I couldn’t see it. Tammy thought it might be related to her reaction to being carried on my shoulders.
Mikhaila was a sunny child and very easy to get along with. One day when she was about fourteen months old I took her along with Tammy and her grandparents to Cape Cod, when we lived in Boston. When we got there, Tammy and her mom and dad walked ahead, and left me with Mikhaila in the car. We were in the front seat. She was lying there in the sun, babbling away. I leaned over to hear what she was saying.
“Happy, happy, happy, happy, happy.”
That’s what she was like.
When she turned six, however, she started to get mopey. It was hard to get her out of bed in the morning. She put on her clothes very slowly. When we walked somewhere, she lagged behind. She complained that her feet hurt and that her shoes didn’t fit. We bought her ten different pairs, but it didn’t help. She went to school, and held her head up, and behaved properly. But when she came home, and saw her Mom, she would break into tears.
We had recently moved from Boston to Toronto, and attributed these changes to the stress of the move. But it didn’t get better. Mikhaila began to walk up and down stairs one step at a time. She began to move like someone much older. She complained if you held her hand. (One time, much later, she asked me, “Dad, when you played ‘this little piggy,’ with me when I was little, was it supposed to hurt?” Things you learn too late …).
A physician at our local medical clinic told us, “Sometimes children have growing pains. They’re normal. But you could think about taking her to see a physiotherapist.” So, we did. The physiotherapist tried to rotate Mikhaila’s heel. It didn’t move. That was not good. The physio told us, “Your daughter has juvenile rheumatoid arthritis.” This was not what we wanted to hear. We did not like that physiotherapist. We went back to the medical clinic. Another physician there told us to take Mikhaila to the Hospital for Sick Children. The doctor said, “Take her to the emergency room. That way, you will be able to see a rheumatologist quickly.” Mikhaila had arthritis, all right. The physio, bearer of unwelcome news, was correct. Thirty‑seven affected joints. Severe polyarticular juvenile idiopathic arthritis (JIA). Cause? Unknown. Prognosis? Multiple early joint replacements.
What sort of God would make a world where such a thing could happen, at all?–much less to an innocent and happy little girl? It’s a question of absolutely fundamental import, for believer and non‑believer alike. It’s an issue addressed (as are so many difficult matters) in The Brothers Karamazov , the great novel by Dostoevsky we began to discuss in Rule 7. Dostoevsky expresses his doubts about the propriety of Being through the character of Ivan who, if you remember, is the articulate, handsome, sophisticated brother (and greatest adversary) of the monastic novitiate Alyosha. “It’s not God I don’t accept. Understand this,” says Ivan. “I do not accept the world that He created, this world of God’s, and cannot agree with it.”
Ivan tells Alyosha a story about a small girl whose parents punished her by locking her in a freezing outhouse overnight (a story Dostoevsky culled from a newspaper of the time). “Can you just see those two snoozing away while their daughter was crying all night?” says Ivan. “And imagine this little child: unable to understand what was happening to her, beating her frozen little chest and crying meek little tears, begging ‘gentle Jesus’ to get her out of that horrible place! … Alyosha: if you were somehow promised that the world could finally have complete and total peace–but only on the condition that you tortured one little child to death–say, that girl who was freezing in the outhouse … would you do it?” Alyosha demurs. “No, I would not,” he says, softly. He would not do what God seems to freely allow.
I had realized something relevant to this, years before, about three‑year‑old Julian (remember him? :)). I thought, “I love my son. He’s three, and cute and little and comical. But I am also afraid for him, because he could be hurt. If I had the power to change that, what might I do?” I thought, “He could be twenty feet tall instead of forty inches. Nobody could push him over then. He could be made of titanium, instead of flesh and bone. Then, if some brat bounced a toy truck off his noggin, he wouldn’t care. He could have a computer‑enhanced brain. And even if he was damaged, somehow, his parts could be immediately replaced. Problem solved!” But no–not problem solved–and not just because such things are currently impossible. Artificially fortifying Julian would have been the same as destroying him. Instead of his little three‑year‑old self, he would be a cold, steel‑hard robot. That wouldn’t be Julian. It would be a monster. I came to realize through such thoughts that what can be truly loved about a person is inseparable from their limitations. Julian wouldn’t have been little and cute and lovable if he wasn’t also prone to illness, and loss, and pain, and anxiety. Since I loved him a lot, I decided that he was all right the way he was, despite his fragility.
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?  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.
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.
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.” 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:
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.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?
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?
Disintegration and Pain
Mikhaila stayed awake many nights when she was in pain. When her grandfather came to visit, he gave her a few of his Tylenol 3s, which contain codeine. Then she could sleep. But not for long. Our rheumatologist, instrumental in producing Mikhaila’s remission, hit the limit of her courage when dealing with our child’s pain. She had once prescribed opiates to a young girl, who became addicted. She swore never to do so again. She said, “Have you tried ibuprofen?” Mikhaila learned then that doctors don’t know everything. Ibuprofen for her was a crumb of bread for a starving man.
We talked to a new doctor. He listened carefully. Then he helped Mikhaila. First, he prescribed T3s, the same medication her grandfather had briefly shared. This was brave. Physicians face a lot of pressure to avoid the prescription of opiates–not least to children. But opiates work . Soon, however, the Tylenol was insufficient. She started taking oxycontin, an opioid known pejoratively as hillbilly heroin. This controlled her pain, but produced other problems. Tammy took Mikhaila out for lunch a week after the prescription started. She could have been drunk. Her speech was slurred. Her head nodded. This was not good.
My sister‑in‑law is a palliative care nurse. She thought we could add Ritalin, an amphetamine often used for hyperactive kids, to the oxycontin. The Ritalin restored Mikhaila’s alertness and had some pain‑suppressing qualities of its own (this is a very a good thing to know if you are ever faced with someone’s intractable suffering). But her pain became increasingly excruciating. She started to fall. Then her hip seized up on her again, this time in the subway on a day when the escalator was not working. Her boyfriend carried her up the stairs. She took a cab home. The subway was no longer a reliable form of transportation. That March we bought Mikhaila a 50cc motor scooter. It was dangerous to let her ride it. It was also dangerous for her to lack all freedom. We chose the former danger. She passed her learner’s exam, which allowed her to pilot the vehicle during the day. She was given a few months to progress towards her permanent licence.
In May her hip was replaced. The surgeon was even able to adjust for a pre‑existent half centimetre difference in leg length. The bone hadn’t died, either. That was only a shadow on the x‑ray. Her aunt and her grandparents came to see her. We had some better days. Immediately after the surgery, however, Mikhaila was placed in an adult rehabilitation centre. She was the youngest person in the place, by about sixty years. Her aged roommate, very neurotic, wouldn’t allow the lights to be off, even at night. The old woman couldn’t make it to the toilet and had to use a bedpan. She couldn’t stand to have the door to her room closed. But it was right beside the nurses’ station, with its continual alarm bells and loud conversations. There was no sleeping there, where sleeping was required. No visitors were allowed after 7 p.m. The physio–the very reason for her placement–was on vacation. The only person who helped her was the janitor, who volunteered to move her to a multi‑bed ward when she told the on‑duty nurse that she couldn’t sleep. This was the same nurse who had laughed when she’d found out which room Mikhaila had been assigned to.
She was supposed to be there for six weeks. She was there three days. When the vacationing physio returned, Mikhaila climbed the rehab‑centre stairs and immediately mastered her additional required exercises. While she was doing that, we outfitted our home with the necessary handrails. Then we took her home. All that pain and surgery–she handled that fine. The appalling rehab centre? That produced post‑traumatic stress symptoms.
Mikhaila enrolled in a full‑fledged motorcycle course in June, so she could continue legally using her scooter. We were all terrified by this necessity. What if she fell? What if she had an accident? On the first day, Mikhaila trained on a real motorcycle. It was heavy. She dropped it several times. She saw another beginning rider tumble and roll across the parking lot where the course was held. On the morning of the second day of the course, she was afraid to return. She didn’t want to leave her bed. We talked for a good while, and jointly decided that she should at least drive back with Tammy to the site where the training took place. If she couldn’t manage it, she could stay in the car until the course finished. En route, her courage returned. When she received her certificate, everyone else enrolled stood and applauded.
Then her right ankle disintegrated. Her doctors wanted to fuse the large affected bones into one piece. But that would have caused the other, smaller bones in her foot–now facing additional pressure–to deteriorate. That’s not so intolerable, perhaps, when you’re eighty (although it’s no picnic then either). But it’s no solution when you’re in your teens. We insisted upon an artificial replacement, although the technology was new. There was a three year‑waiting list. This was simply not manageable. The damaged ankle produced much more pain than her previously failing hip. One bad night she became erratic and illogical. I couldn’t calm her down. I knew she was at her breaking point. To call that stressful is to say almost nothing.
We spent weeks and then months desperately investigating all sorts of replacement devices, trying to assess their suitability. We looked everywhere for quicker surgery: India, China, Spain, the UK, Costa Rica, Florida. We contacted the Ontario Provincial Ministry of Health. They were very helpful. They located a specialist across the country, in Vancouver. Mikhaila’s ankle was replaced in November. Post‑surgery, she was in absolute agony. Her foot was mispositioned. The cast was compressing skin against bone. The clinic was unwilling to give her enough oxycontin to control her pain. She had built up a high level of tolerance because of her previous use.
When she returned home, in less pain, Mikhaila started to taper off the opiates. She hated oxycontin, despite its evident utility. She said it turned her life grey. Perhaps that was a good thing, under the circumstances. She stopped using it as soon as possible. She suffered through withdrawal for months, with night sweating and formication (the sensation of ants crawling upside down under her skin). She became unable to experience any pleasure. That was another effect of opiate withdrawal.
During much of this period, we were overwhelmed. The demands of everyday life don’t stop, just because you have been laid low by a catastrophe. Everything that you always do still has to be done. So how do you manage? Here are some things we learned:
Set aside some time to talk and to think about the illness or other crisis and how it should be managed every day. Do not talk or think about it otherwise. If you do not limit its effect, you will become exhausted, and everything will spiral into the ground. This is not helpful. Conserve your strength. You’re in a war, not a battle, and a war is composed of many battles. You must stay functional through all of them. When worries associated with the crisis arise at other times, remind yourself that you will think them through, during the scheduled period. This usually works. The parts of your brain that generate anxiety are more interested in the fact that there is a plan than in the details of the plan. Don’t schedule your time to think in the evening or at night. Then you won’t be able to sleep. If you can’t sleep, then everything will go rapidly downhill.
Shift the unit of time you use to frame your life. When the sun is shining, and times are good, and the crops are bountiful, you can make your plans for the next month, and the next year, and the next five years. You can even dream a decade ahead. But you can’t do that when your leg is clamped firmly in a crocodile’s jaws. “Sufficient unto the day are the evils thereof”–that is Matthew 6:34. It is often interpreted as “live in the present, without a care for tomorrow.” This is not what it means. That injunction must be interpreted in the context of the Sermon on the Mount, of which it is an integral part. That sermon distills the ten “Thou‑shalt‑nots” of the Commandments of Moses into a single prescriptive “Thou shalt.” Christ enjoins His followers to place faith in God’s Heavenly Kingdom, and the truth. That’s a conscious decision to presume the primary goodness of Being. That’s an act of courage. Aim high, like Pinocchio’s Geppetto. Wish upon a star, and then act properly, in accordance with that aim. Once you are aligned with the heavens, you can concentrate on the day. Be careful. Put the things you can control in order. Repair what is in disorder, and make what is already good better. It is possible that you can manage, if you are careful. People are very tough. People can survive through much pain and loss. But to persevere they must see the good in Being. If they lose that, they are truly lost.
Дата: 2018-09-13, просмотров: 520.