There is a little boy in Birmingham, Alabama, eleven years old, who has seen more pain in his young life than most will ever see, even if they get their three score and ten, which he likely never will. After three bouts with leukemia, he’s now undergoing treatment for a rare type of tumor lodged behind his right eye, from the Birmingham News article:
This is actually the fourth course of cancer treatment Sean has experienced. On Valentine’s Day 2003, when he was 2, Sean was diagnosed with leukemia, for which he was given 2½ years of treatment. Three months later, doctors discovered a relapse in his central nervous system, which required another two years of treatment and radiation.
Then on the last day of treatment and testing, the Fredellas learned the leukemia was back again. Sean underwent a bone marrow transplant, with his brother as the donor, and recovered. He had been cancer-free for 3½ years until last fall, when the new tumor was found, Nell Fredella said.
The article is about the child’s neighbors in Mountain Brook (the wealthiest of the ringlet cities draped around the southern edge of Birmingham proper) raising money for his three-weeks-per-month treatments at M.D. Anderson. They’ve raised a bit over $2,00o, hardly enough to get someone in the door for evaluation at a cancer treatment center like M.D. Anderson, but its doubtful his parents haven’t a surfeit of other sources for paying the medical bills for his treatments.
The article is a fluff piece, intended to elicit sympathy for the boy’s plight, so it doesn’t ask the hard questions. When has a child suffered enough pain? When does the cost in pain, time and dollars–for both the child and for his family–become too high to contemplate its continuance? Is life always better than death?
As anyone regularly reading my posts knows, my son has suffered through two bouts of leukemia, and two bone marrow transplants; the first when he was seven, the last a couple of years ago, at age fifteen. The last transplant was especially harrowing. He suffered terribly, for over a year, including about six months or so where he was admitted to the hospital.
During the holiday season two years ago, he was in the thick of the transplant, teetering for weeks between life and death. I was distraught, but not because he might die. I knew that he would eventually die. Doctors don’t save lives. They sometimes have the capacity to extend life, but no doctor has ever saved anyone’s life. I was distraught because I felt I had let him down, mortgaging his last good days on earth for a high-risk, excruciatingly painful treatment that had already been tried, and had ultimately failed. I was highly skeptical of the oncologist when he explained on the occasion of the relapse that he could “cure” him with another transplant. The first transplant had not cured anything. Why should we expect different results if we’re doing the same thing? I felt as if I owed it to my son to fight for the best possible life he could enjoy, no matter its duration. When it looked as though all the pain of the transplant were to be for naught, I blamed myself for not having fought harder against doing another transplant.
Truthfully though, I had little say in the matter. The culture has a default answer for questions of life and death, particularly concerning children–more life is good, less life is bad, the quality of life is all but immaterial, and the opinions of the parents don’t matter. Reasoned contemplation about the big picture is not allowed. What if a bone marrow transplant succeeds in eliminating the cancer, such as it did with Sean in the article, but the chemo and radiation of the transplant make it overwhelmingly likely that a new cancer will arise? What if the cancer is cured, but at the expense of a major organ system, such as the kidneys, such as it temporarily appeared would be the case with my son? If cancer-free living means a life of thrice-weekly dialysis, has the situation really been improved? Is it ever proper to consider the cost in resources and family upheaval a particular treatment would entail before pursuing it as a last-gasp hope for extended life? Is it ever better to simply live with the cancer so long as it is possible, to ultimately pass peaceably into that good night when it isn’t?
These are questions that American culture refuses to allow. It is a catechism of the culture’s materialistic theology, which illogically arises as a corollary of its Christian roots, that the continuation of one’s earthly presence is more or less always to be desired. If all that matters is material well-being, then what could matter more than the continuation in space and time of the material of one’s being? The most fearfully protected possession (of a whole host of them, else there wouldn’t be a property insurance industry), is one’s bodily existence. Because materialism without material existence is meaningless, no material resource is to be spared to keep a person, particularly a child, alive. Though Christianity promises a life of blissful heaven after death, getting there early by refusing to battle against Nature’s verdict is cheating. Part of the punishment for the original sin of existing is to suffer existing, no matter how painful, for so long as breath allows. No stern Presbyterian would ever get to heaven by eating dessert first, and no faithful Christian would refuse to battle Nature in order to achieve his blissful reward.
This obsession with the material continuation of life seems instinctive. After all, as I’ve often said, isn’t life about lunch, and isn’t lunch nothing more than the succoring of its material continuation? Indeed, in the immediate sense, the purpose and meaning of life is lunch, i.e., meeting life’s needs for its continuation, so far as is possible, but the soul knows all the striving can’t keep death away. Human beings, and all other creatures, instinctively understand the temporal nature of their existence. Life knows it will die, but part of the human cost of having such a powerful reasoning capacity is that humans must to sort through a cacophony of rationalizations their massive brains can contrive in order to hear the murmurings of their soul.
Americans never wish to listen to their soul, and America is rich enough (for now) and smart enough, that when death gurgles up from its depths, it can almost always be denied, at least a little while longer. So long as America remains rich, Americans can remain defiant in the face of death. They can continue to be comforted by a view of life as a battle against Nature that their side is mostly winning, up until the very end.
This view of life comports with Americans’ linear, progressive view of its history. In this view, each individual’s life is a struggle to achieve its manifestly destined purpose, a microcosm of the struggle for destiny being waged by society at large, against which all obstacles must be overcome, including the specter of death. It is a middling view of time, longer than the immediacy of lunch, but a radically shorter perspective than geologic time, or even half a millennia of history, might provide. A life that ends without achieving some secular purpose projected upon it is considered a tragedy, thus a child dying before achieving the dreams of his parents is devastating. Dying early or young means dying without having a life that mattered.
Eastern Buddhist cultures–China, Japan, Korea, etc., viewed life as cyclical, instead of progressive, or at least mainly did before the adoption of Western capitalism in the last several decades turned a great many of them into secular materialists. To end the ceaseless, cyclical suffering of existence required achieving Nirvana, which in turn required the elimination of cravings, a decidedly non-materialistic point of view. Achieving an enlightened state allowed one to see things just as they are, not how one wished them to be, in the process revealing the interconnectedness and infinity of all things. All life matters in Eastern religious traditions. Just because a child dies young does not mean its life was lived in vain.
In my view of heaven and earth, which comports quite closely with the Buddhist view, God is the omniscient, omnipotent, omnipresent infinity that is all things and forces and is thereby the immanent cause of everything. No matter what happens, it happens because of God’s will and plan, which is always good, unless God is imagined to be imperfect or purposeless. A child that dies young will not have lived in vain, but human beings, in their finitude, will only rarely be capable of glimpsing why.
About four months into my son’s second transplant, I learned to thank God for the struggles. I didn’t know why God should have afflicted my son with such a terrible malady. Neither I nor the doctors knew why his bladder was bleeding so profusely at the time that he needed about a bag of packed red cells every day, but I decided it was God’s will, so it must be good, and thanked God for it.
I know something of what this family in Birmingham is enduring. I hope, if they haven’t already, they can find a way to accept whatever fate awaits their son; that if he fails to get his three score and ten that Americans have come to consider a birthright, they understand that his life will not have been lived in vain. His life matters no matter its duration. It is eternally as much a ripple on the fabric of God as is any other. Whatever linear, progressive view of purposeful life that humans might contrive is not the same as that of our Creator, whose purposes are rarely, if ever, unambiguously revealed to us. The challenge to which one must rise is learning to live with and accept the ambiguity.