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.210 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.