(Note: This is not a story about inspiration so much as it is a story of intellectual discovery. I suspect that very few folks of a religious bent would find much in it to inspire. It’s only just my story, in greatly truncated form, of how I fashioned an understanding of God between the transplants.)
It took a post-transplant infection nearly killing my son during his first transplant for leukemia to reveal the fragile and utterly facile philosophy and theology upon which my view of existence was grounded. In mid-September of 2001 my son had been admitted to the hospital for a low-grade fever that wouldn’t go away. He was about two months post-transplant at the time. By late October, the infection had so progressed that the transplant doctor told us there was nothing more he could do. In the meantime, I had been pulling night duty at the hospital, working all day at my real estate closing practice, only to spend all night watching my son slowly slip away. All the initial panic and euphoria over his diagnosis back in April had now settled to gloom. If God is light, as the apostle John said (1 John, Chapter 1, verse 5), then it felt like God was abandoning us. Autumn’s lengthening shadows and shortening days seemed divinely correlated to the light fading from my son’s eyes.
I was physically, mentally and emotionally near complete exhaustion. Greenspan had initiated the first wave of interest rate decreases that would ultimately result in the real estate bust, but refinances were about then booming. I had six closings scheduled the day that my wife called to tell me the doctor had basically said our son was going to die. I hadn’t the luxury of simply canceling the afternoon. My customers could not have cared less whether my son was dying. They just wanted their closings to go off without a hitch. The practice would have suffered immeasurably had I not been able to keep at it. So I did the closings, and between each one, closed the door to my office and cried. I didn’t realize it at the time, but my life was falling apart because of its banal foundation in cultural materialism that considered the quantity of life, more than its quality, of paramount importance. The logical inconsistency of believing that life’s purpose and meaning was to be found in its continuation had not occurred to me, but tragedy has a tendency to lay bare such shortcomings.
When finally the day was done, I trudged down to the hospital to again take up my position on death watch. I hadn’t an ounce of reservoir left. Everything was gone. Then the doctor came in with startling news. The infection seemed to be clearing up. The EBV count they’d taken that afternoon was drastically lower (he’d had post-transplant lymphoproliferative disorder, which is a form of infection by the Epstein-Barr virus). The fever had subsided. Two days later the kid was discharged, and not readmitted again, until the relapse of leukemia eight years later.
During the long march towards the death watch, when things were the very darkest, and my own mental and physical health were pushing towards endangerment, it must have been an act of self-preservation that caused me to begin evaluating this whole thing with my intellect instead of my heart. And what my intellect said, though it had almost to shout through my emotions, is that death is not a tragedy. It is a normal part of life. The question is not whether one will die, the question is when. My heart would respond that it goes against nature for a child to be buried by its parents. To which my intellect would reply that it may go against nature now, but in our not-so-distant past it was a very natural thing for a parent to bury half or more of their children before they reached the age of maturity. The idea that burying children is a tragedy of epic proportions is just a projection of medical advancements on mortality expectations.
Emotionally, the worst part of any extremely stressful experience comes after the stress has been eliminated. Stress seems to operate as a dam holding back the flood of emotions that would overwhelm the psyche and possibly destroy it if allowed to freely rage. When the stress is eliminated, the dam goes with it. The flood of emotions can be overpowering, even debilitating. When it happens to combat soldiers, they call it shell-shock and until recently, the prescription was to return the soldier back to the field of battle as quickly as possible. The compulsion to survive that kept the emotions safely contained during battle can quickly rebuild the containment mechanism when the body is re-endangered. The instinct to survive is even more compelling than the emotions that are often associated with it.
The dam broke for me a few months after the kid returned home from the hospital. But it wasn’t overwhelming emotion I felt so much as my intellect was beaten down for not having done its job. My heart laid into me for having failed to listen to my head. It demanded my head to think and see things clearly, in other words, to do that for which it was designed. It forced me to realize that I was terribly ill-prepared to deal with life because I wasn’t at all prepared for dealing with death. It brazenly flung open the attic doors of my mind behind which I had secured all the questions about life’s meaning and purpose many years ago, screaming at me to find some answers. My heart basically told my head to get its act together and get busy or it would be the death of us all.
It is a measure of how deeply immersed I had become in the materialistic culture that comprises child-rearing in America that these simple truths escaped me. Every sinew, every fiber of being, for an average American parent, is consumed with materialism. There is never enough money and wealth. But what happens when all that money and wealth can’t buy the material continuation of the lives whom it is meant to support? Is there any point to all the suffering and pain endured to acquire it? Is there some sanctifying purpose that makes it all worthwhile?
I didn’t know, so I went seeking answers. Over the course of the next several years, I studied theology, philosophy and history, along with biology, chemistry and physics, to try to make sense out of what had just happened, both to me, and to my son. By the time he relapsed eight years later, I was finally enjoying some measure of the blessedness and peace that arises from understanding. This is the story of how I got there.
So far as religious background goes, I grew up Methodist, which, in the latter half of twentieth-century America, meant that I had almost no formal training or exposure to Christian theology. Though my pious parents made sure I was at the church every time the doors were open, I learned almost nothing about God, or Christian theology, or the Bible, through my attendance. By the time I came along, Methodism was rushing head-long into the decadence and decay in which it is now mired, having nigh-well completely abandoned the strict Wesleyan doctrines and unique methods (hence the name) of prayer and worship upon which it was founded for simply operating as a social club into which one paid dues. In fact, by the time I finally abandoned Methodism, it seemed to exist mainly as a retirement plan for older ministers when it wasn’t functioning as a political platform for the liberal rants of the younger ones. Conveniently for the church, Methodist doctrine, such as it is, provides that attending church and donating money is an integral part of the Christian faith. Since Jesus only mentioned the church twice, and never to lay any claim on the wealth of its members, the self-serving Methodist doctrine has as its only virtue that it is blatantly open in the manner with which selfish bias animates belief.
Methodism was founded in the mid 1700’s by John Wesley, a cleric in the Anglican Church, as something of an evangelical offshoot of Anglicanism. Though it broke free of Anglicanism in America by the end of the Revolutionary War, in England it remained within the Anglican Church, which was itself an offshoot of Catholicism. By the time Methodism was exposed to me, it was as full of meaningless ritual and rote recitation as its original progenitors, but with none of the deep cultural ties that bound them. The particular church in which I was raised was celebrating its centennial year, along with the city in which it was located, in the early seventies when we began attending. It was one of a very few old-line denominations that remained downtown in the city. The Episcopalians and Catholics were still holding out with downtown churches, but the Baptists and Presbyterians had long since followed their congregations to the suburbs. Though it wasn’t apparent to me at the time, the church was in decline; its membership had peaked about twenty years earlier. There was no good reason to go downtown to a Methodist church. The Episcopalians (i.e., the Anglican Church in America) did a better job at high church snobbery if that was the purpose for shuffling downtown for church, and the Catholics did better at strengthening the ties that bound the family together, if that was the purpose.
The original purpose of the Methodist movement begun by John Wesley was to bring salvation to the impoverished masses that had been mainly rejected or ignored by the mainstream Anglican hierarchy, but it had since evolved to become something of a poor imitation of its antecedent denominations, not much interested in carrying forward its evangelical roots to the only mass of the impoverished—the inner city blacks—that remained. Poor white Methodists had become rich white Methodists and rather preferred escaping their status as the Anglican/Episcopalian poor cousins to offering salvation to the unwashed masses. It’s doubtful John Wesley would have approved of his Anglican heritage being put to such use, but not surprising that it was. Such is the regular life cycle of organizations, religious organizations comprising no exception to the rule, that when an organization is conceived in poverty, once riches are achieved, they wish to behave like the very organizations which served as antagonists propelling their formation.
None of this mattered to me whilst growing up, or even later, when I returned to the church after moving back home to raise my family. I had never paid much attention to the theology or organization or purpose of the church. I just attended because it seemed like I ought, all the while considering the spiritual part of church to be as hokey as it appeared the church did. On the rare occasion when I considered spiritual matters in a manner that was more than just superficial, I figured that the church was about the last place to look if one wanted to understand God, or find an example worth emulating of living in the manner of Christ. Christ had no pews, stained glass, pipe organs and finely-adorned choirs lifting up their voices in song. He had simply his message. But I don’t mean to single out Methodism or my particular church for disapprobation. I figured all the mainline denominations, if each could be understood by viewing them as a reflection of their devotees, were similarly bankrupt. Neither did the growing Pentecostal and Evangelical movement hold any attraction for me. Through my upbringing, I’d had seen quite enough of attempts at engaging the world solely through emotion to understand that the results are always tragic.
We had been attending for a few years at the time of my son’s initial diagnosis. When it came, the church family was supportive, providing meals (a practice that seems likely, even in this age of instantaneous and bounteous food acquisition and preparation, never to die), and praying for us. But altogether, their efforts often seemed more of a burden than a blessing. In one instance, when an associate pastor came by my son’s room to helpfully explain to him what it meant to go to heaven, apparently assuming heaven would be the next stop on the tour of his life, having church support seemed to be nothing but a burden. I had to intercede and prohibit the pastor from offering any further help. Any reasonable adult should understand that seven-year-old kids needn’t worry about heaven and hell. Later on, during discussions in our adult Sunday school class, after I had turned my attention to truly understanding God and the Christian theology and had initiated some self-study along those lines, I grew to realize that pretty much everyone in the class was completely ignorant about the theology and philosophy they purported to follow. The die was cast when the senior pastor tried to impress the class one day with a dissertation on God’s will that was so much gibberish until my mind has completely erased everything about it but the memory of its occurrence. I left the church and struck out to discover God and Christianity on my own.
In looking for God, I started with the Bible. I attained a copy of Holman’s Concise Bible Commentary and read each commentary before reading the actual book in the Bible. Because the Commentary provided an overview of the message, and tried to identify the writer of the book and in what context it was written, this proved to be a valuable exercise. The professional theologian would perhaps scoff at the simplicity of the commentaries, but simplicity was exactly what I was after. I wanted to drill into the essence of the Bible, and the Commentary helped immeasurably in that regard. For the first time in my life, I was gaining an inkling of understanding at what exactly the Bible was about.
Because it seemed that understanding Christianity would require first understanding Judaism (Jesus, as I like to point out to the Christians that wish to save the Jews, was a Jew), I started with the Old Testament and worked my way chronologically forward. I got through the Torah still a bit confused about Judaism, so branched out, studying a couple of Talmudic synopses, Everyman’s Talmud by Abraham Cohen and The Essential Talmud by Adin Steinsaltz. Both were excellent, but I suspected that theology perhaps did not offer a complete portrait of what being Jewish meant, so turned my inquiry to Jewish history, reading a well-written (if a bit jingoistic) popular history, Jews, God and History by Max I Dimont. It was there that I discovered Baruch de Spinoza, a seventeenth-century Jewish philosopher. Dimont had somewhat offhandedly claimed Spinoza to be one of, if not the, greatest of all the modern philosophers (“modern” meaning post-Renaissance), and that his philosophy and theology may one day yield a new rationalist world religion that would sweep away the contradictions of Judeo-Christian theology into a unifying and rationalistic whole. Yet I had never even heard of him. How could I have endured nineteen years of so-called “education” yet not know of perhaps the greatest philosopher since the Renaissance? A question for another day. I immediately did some internet research on Spinoza and decided to purchase the magnum opus of his philosophy, Ethics.
The book was difficult at first; Spinoza took Descartes’ mathematical example to lay out his philosophy in a series of Euclidian geometrical proofs. But once settled into understanding the process, the truths came tumbling out. Part I, Concerning God, grounded the philosophy in God, “an absolutely infinite being” as Spinoza defines Him, and just as Genesis and the Talmud had described. (Incidentally, “It”, not “Him”, is more apropos, considering that the being so described is not amenable to anthropomorphizing, though Spinoza continued to use masculine pronouns when speaking of God.) Spinoza laid out the logical implications of this absolute infinity: God is Substance (the definition and proof for which he provides), therefore God is eternal; God’s existence and essence are one and the same; God is the efficient cause not only of the existence of things, but of their essence; God is the immanent, not transitive, cause of all that happens in every corner of the universe, etc. In the manner of understanding the omniscient, omnipotent, omnipresent and absolutely infinite creature described in the Torah and its Talmudic exegesis, Spinoza’s objectivity arrived like a cool breeze in my mind, sweeping away the stultification caused by trying to understand God in the many guises which the Hebrews and Christians had fashioned for him according to their immediate desires. Now I had it. God is the one and only infinity. God causes everything, including himself. God is in and of everything. God is, as described in the Eastern religions, One.
Parts II through V set about to apply this metaphysics of God as a being of absolute infinity. Part II explains how man gains knowledge (epistemology). Part III defines human emotions and from whence they arise. Part IV explains how man gains freedom from his emotions, and Part V describes the blessedness that comes through escaping emotional bondage to enjoy the intellectual love of God. Proposition 15 of Part V succinctly sums up what it meant to have a relationship with God: He who clearly and distinctly understands himself and his emotions loves God, and the more so the more he understands himself and his emotions.
For Spinoza, writing as the world was awakening from several hundred years of intellectual slumber during which time the Church and its priesthood had adopted Aristotelian explanations for metaphysical mysteries, using the supernatural to account for inexplicable natural phenomenon, emotions formed the source of much distress and unhappiness because of “…their origin especially in excessive love toward a thing subject to considerable instability, a thing which we can never completely possess.”(Scholium, Proposition 20, Part V).
Spinoza was and is derided as a Pantheist. Judeo-Christianity would be pantheistic as well, if its ideas of God had any logical consistency. God simply cannot be omniscient, omnipresent, omnipotent and infinite, yet at the same time be choosing sides over which Semitic tribe in Palestine gets to inhabit Canaan. Contrary to the exhortations from the pulpits on Sunday morning, man can never glorify God, no matter how many hymns are sung or praises rendered. God is the absolute infinity, and man is not.
Spinoza explained that the idea of the existence of good and evil is a function of human perspective. From the perspective of God, the immanent cause of everything; the absolutely infinite being that sees all of time and space at once; everything is good. Were it not so, then God would be guilty of doing and being that which God thought was bad, which is ridiculous. God is good in all times and all circumstances, therefore all is good. Humans, finite in space and time, have a severely limited capacity to see things as God perceives them, so humans nominate things good or evil from their own limited perspectives.
Spinoza simultaneously revealed and resolved the problems nesting at the heart of Judeo-Christian theology. God cannot be chopped into pieces. Evil does not exist in the world because of God’s impotence, but because of man’s finitude. God is not irrational or arbitrary or capricious or vindictive. God is the essence of rationality. Every effect has a cause, which is God.
Though the Hebrews sliced and diced and anthropomorphized God to fit Him to whatever purposes in the Torah that they wished, their efforts obscured, rather than revealed, the true nature of God. The ancient Psalms, and perhaps Job and Ecclesiastes, revealed a better understanding of God as the absolute infinite being, and were originally written, if not compiled, well before the Torah, during the time of David and Solomon. The Torah, according to Spinoza, was only finally compiled, probably by Ezra, during the return to Jerusalem after the Babylonian exile, about 550 B.C. In his Theological- Political Treatise, Spinoza explained that the Torah could not have been written by Moses, unless it could be imagined that Moses would write of himself in the third-person; could write of his own death, and would have decreed himself to be the greatest of all the prophets to date, and of all that are yet to come. Spinoza’s basic idea regarding biblical authorship in the Treatise is that Ezra took the oral history of the Hebrews and the limited writings of Moses, including the law God dispensed to him on Mt. Sinai, and compiled it all in the Torah as a unified narrative of the history, culture and law of the Hebrew people with the aim of promoting adhesion and unity amongst them such that they might survive as a distinct nation throughout the Babylonian exile and its aftermath.
It’s remarkable that Spinoza is held in such high regard by Jews today. His views (we’re not sure exactly which) gained him permanent exile and excommunication from his community of Sephardic Jews in Amsterdam when he was only twenty-seven years old. Ethics was not published until after his death at age forty-four, so his view of God as explicated there could not have been the cause. The Theological-Political Treatise is one of his few writings that were published while he was alive, but it contained nothing especially radical, except the idea that Moses could not have written the Torah, a view which is generally accepted today.
Spinoza’s views of God are today, even among the Hebrews, not generally accepted, or are at least not practiced. Judeo-Christian theology believes in a personal God, but God as Spinoza described Him could not be any more personal to one man than he was to another. In fact, Spinoza’s God is so consummately personal, with all men owing their existence and essence to Him, until God is eminently impersonal so far as any particular human is concerned. Spinoza’s God is everywhere and causes everything, so interpretations of His behavior could not be put to service in binding and keeping a nation or people unified and loyal. For obvious reasons, Spinoza’s God never gained purchase in a mainstream society, Hebrew or Christian, whose primary object to be accomplished through religious faith was infusing loyalty, cooperation and obedience in its subjects.
Having profited so handsomely by delving into philosophy in my quest to understand Judeo-Christian theology, I extended the philosophical study, first by reading Bertrand Russell’s magnificent survey, The History of Western Philosophy. Russell introduced me to, inter alia, Socrates, Plato and Augustine. Because Russell, who had taken a complete book to explain why he wasn’t Christian, had so lavishly praised St. Augustine of Hippo, a Christian philosopher and theologian of the 4th Century A.D., I turned the focus of my studies next to him.
Through Augustine, I learned about time and eternity. Augustine explained that all of time is contained in each passing moment; the past is a present remembrance of time already gone; the future is a present consideration of all that will come; and the present is each moment as it flows by, laden with the past and pregnant with possibilities for the future. Thus the moment is all we have and can see of eternity; living in the moment is akin to living in eternity, a truth that I would put to great use when the relapse rolled around.
Augustine reiterated (for me, perhaps originated for Spinoza) the idea that wickedness arises from the love of temporal things, from On Free Choice of the Will:
All wicked people, just like good people, desire to live without fear. The difference is that the good, in desiring this, turn their love away from things that cannot be possessed without the fear of losing them. The wicked, on the other hand, try to get rid of anything that prevents them from enjoying such things securely. Thus they lead a wicked and criminal life, which would better be called death.
Augustine, in a few short sentences, summarized for me the wickedness at the root of all of American history and culture, and the source of anguish over my son’s temporal body as he lay in that hospital bed fighting for his life.
Augustine admonished that one must first believe, and then they might understand. Perhaps before Spinoza I had never believed in a God, and even afterwards, I’m not sure if my acceptance of Spinoza’s truths about God would qualify as belief, but I understood what Augustine meant. The desire to believe directs understanding, though can’t act as its substitute. Faith, as is traditionally understood, is necessary in accepting that all things—even those that seem bad –are necessarily good because God is in and causes all things.
Russell had compared Socrates to Jesus in temperament and philosophy, so I moved on to studying him, which is accomplished through reading Plato’s dialogues. Like Jesus, Socrates never wrote anything down. All we know of him we learned through the writings others, mainly Plato. From Socrates, I learned the wisdom of humility, and how love and eternity are intertwined and expressed through the reproductive impulse. (Symposium).
I took all these bits (and a great many more, but for brevity’s sake, if it’s not too late…) and cobbled them together with bits gained from studies of biology (the theory of evolution by natural selection) and physics (the equivalence of matter and energy; the nature of gravity) to arrive at a philosophy of existence that I hoped would provide some foundation and stability for meeting whatever challenges lie ahead. In summary, its basic tenets look something like this:
~God (or the universe) is one absolute infinity in which all of everything: matter, energy, space and time exist. All things are connected because God is in all things and is the cause of all things, and God is good in all times and all circumstances.
~Man, like all other living creatures, is a special mode of God, finite in space and time, yet imbued with the impulse to eternity that arises from survival and reproduction. Of all God’s creatures, man alone has free will, i.e., man is uniquely capable of acting against his instinctive impulses.
~Man’s existence is harmonized and his love for God maximized through applying his reasoning faculties to understanding and directing his emotional impulses to love only those things that can be loved without the fear of losing.
~Man, being finite in space and time, can never fully understand that which is infinite and eternal, i.e., God. If there is a purpose to our suffering and pain, God’s infinity often keeps it obscured from our finite view.
The scaffolding of understanding man and God, and their relationship, so far as I felt it possible, was thus erected. But through all the metaphysics, an ethical foundation for life had not emerged. Spinoza’s Ethics paradoxically offered little guidance in how to live ethically. Yet even the heretic Jew recognized the profundity of Christ’s teachings:
…a man who can perceive by pure intuition that which is not contained in the basic principles of our cognition and cannot be deduced therefrom must needs possess a mind whose excellence far surpasses the human mind. Therefore, I do not believe that anyone has attained such a degree of perfection surpassing all others, except Christ. (Chapter 1, Theological-Political Treatise).
Christ’s ethic for living in society, elegant in its simplicity, was derived from the admonition in Leviticus 19: 18, Do not seek revenge or bear a grudge against one of your people, but love your neighbor as yourself. But “neighbors” in Leviticus can be construed to mean only a man’s Hebrew brethren, directed as the Torah is, to the Hebrew Nation. Jesus made it universal, summarizing all of Old Testament law and ethics into two simple admonitions:
Love the Lord your God with all your heart and with all your soul and with all your mind. This is the first and greatest commandment. And the second is like it: Love your neighbor as yourself. All the Law and the Prophets hang on these two commandments. (Matthew Chapter 22: 37).
Implicit in Jesus’ admonition to love your neighbor as yourself is that first you must love yourself. And as Spinoza said, He who clearly and distinctly understands himself and his emotions loves God, and the more so the more he understands himself and his emotions (quoted supra). Loving God with all the heart, soul and mind meant understanding your own heart, soul and mind. Only then could a person live an ethically admirable life through loving one’s neighbor as oneself.
Thus was laid the foundation for my life. It held me in good stead during the second round of leukemia. Though a diagnosis of relapsed ALL offers a bitterly grim prognosis so far as life’s continuation is concerned, a fact of which I was well aware, I believed my son’s relapse was somehow good; that in some cosmic understanding I would likely never grasp, this thing was good because it came from God. Those around me perhaps considered my acceptance to be resignation, but they misunderstood. Though knowing the statistics regarding relapsed leukemia, I ignored them so far as my son was concerned, and simply accepted that his fate, as always but rarely so poignantly revealed, was out of my hands. I prayed for strength, wisdom and serenity to face the eternity presented with each passing moment.
I don’t believe in intercessory prayer, or communal prayers, or really much of any type of prayer generally accepted by Christianity as a legitimate exercise of faith. In my estimation, all prayer is simply a talking with one’s own self, and should be done privately, as Jesus admonished (Matthew Chapter 6). Intercessory prayer is especially repugnant. It is tantamount to hiring an attorney to represent one before God’s court. Which is silly, if it is considered that the closest and most relevant court in which God reigns supreme is our own minds and bodies. Believing in the effectiveness of intercessory prayer is tantamount to believing that a) God’s absolute infinity can be moved to action by merely finite mortals, and b) that growing in blessedness, which is only accomplished through knowing and understanding ourselves, can be achieved through the efforts of others. A relationship with God cannot be outsourced. Jesus’ teachings, if standing for anything, stand for the idea that relationship with God is a personal matter through which no human need, nor should, intercede.
So I cringed at the prayer offered by the Baptist pastor who visited our hospital room on the day that my son was to have a bone marrow aspiration to see if a particularly brutal round of chemotherapy had finally pushed his cancer into remission. We had been about two and half weeks in the hospital by that time. The initial round of chemotherapy had failed, like the first time, to push his cancer in remission. This next round was it. If his cancer didn’t remiss, there was only palliative care remaining. Though he was tracked for a bone marrow transplant, his cancer had to be in remission before it could happen.
My foundation in believing that all this was somehow good was holding fast. I neither hoped for the best nor feared for the worst, but did feel twinges of anxiety around the edges that I would not do my job properly if the cancer was not in remission. So, as always, I prepared as best I could so that pain, if it came, wouldn’t overwhelm me, or those around me. The contemplation of the untimely death of a loved one is painful, no matter what is the philosophy of your existence. I imagined that if the cancer were not in remission, God expected me to guide my son to the grave as painlessly as was possible, while comforting his loved ones so much as I was able. If it had been put in remission, then the job was easier, because it would be less painful.
The pastor had dropped by mid-morning with his wife, who happened to be an employee of the hospital. Though about my same age, I didn’t personally know either of them. We had begun attending church again a few years prior to the relapse, but this time at a huge local Baptist church where this guy was an associate pastor. We went mainly for the kids to get some sort of ethical foundation for their lives. They attended Sunday school while the wife and I went to “big church”. Give the Baptists credit. The kids were actually expected to learn something of what the Bible said, and maybe even a bit about its ethics. And though I didn’t believe as the Baptists did (i.e., in the divinity of Christ), I admired them for not apologizing for their beliefs. Involvement in the prior church having left such a foul taste in my mouth, I refused to get involved in any of the adult activities that make church something more than just sitting in a pew attending a performance. And because I had never been dunked in the Baptist holy water, I couldn’t be a member anyway. The Methodist sprinkling I’d had as a baby wouldn’t do. Which suited me. Though only what they call a “watch care member”, the church didn’t mind cashing my checks, but neither did they object to me sitting in their pews on Sunday morning to hear some church music and enjoy some remarkably good preaching, which was also surprisingly sound theologically.
My son had already gone downstairs for the procedure by the time the pastor and his wife arrived, so we could openly talk about what the bone marrow aspiration results would mean. I explained that I had learned to turn my love away from things, like my son’s temporal existence here on earth, that I could not possess without the fear of losing. I told them that I trusted that whatever God decided would be good, for reasons I would probably never understand. The pastor’s wife started crying. I thought I should be the one crying. I certainly had suffered a few bouts of tears. No matter how hard the head wishes to control the heart, a good cry is sometimes the only way to harmonize the two. The pastor’s wife almost got me started. That’s the problem with all these compassionate people. I would often as not be better off alone because I was way ahead of most people in resolving these difficult issues, so how could their compassion help me? As the meeting wore down, the pastor offered to end with a prayer. Of course, I agreed. Then he called on God to make this leukemia go away, to heal my son, etc., as if by this pastor’s able hand God’s absolute infinity could be directed and guided. Though it repulsed me; though I wanted to scream that God had afflicted him with leukemia for reasons only He knew, and that praying for God to save him was possibly akin to asking God to subvert His own will, I remained silent. Most people, I suppose, would have expected the pastor to pray exactly as he did. I considered it the essence of vulgarity for a puny human to believe himself powerful enough to command God to action.
A couple of hours later, the Paul Simon look-alike doctor arrived to let us know that it appeared the cancer was in remission. The next step would be the transplant.
A bone marrow transplant is a grueling medical procedure. The bone marrow—the source of all the blood products of the body—is killed to clear out any remaining leukemia cells and to make way for the new marrow. Incidental to the marrow’s killing is quite a bit of collateral damage to the rest of the body, including particularly the gastrointestinal tract, the kidneys, liver and bladder, and even at times, the heart and lungs.
My son’s kidneys took the brunt of the abuse. It was about a month after the actual transplantation of his marrow that they finally sputtered and died. That was bad, but nothing that dialysis couldn’t fix. Then it appeared his liver was failing. Which sort of tipped me over the edge. There’s no recovery, no answer, for liver failure. It proved to be a premature diagnosis on the part of a young physician that didn’t quite understand excessive fluid accumulation (such as happens with kidney failure) will impair the liver’s functioning. He had diagnosed venous occlusive disease (VOD) without really any good basis for doing so. But I didn’t know that at the time, and just assumed this was likely the last stage. I was distraught. I felt I had failed at what God expected of me—to see that my son suffered as little as possible during his last months on earth. I had allowed them to undertake a transplant so that he might have a chance at a few more years of cancer-free living when I knew that continued existence on this planet is nothing to focus one’s love upon. I had tried to mortgage his quality of life for its quantity, and had miserably failed. I had allowed the vulgar materialism of this society to lose my focus on the eternity that mattered. It was Christmas Eve when they told us they would be moving him down to intensive care so they could put him in constant dialysis.
Christmas already didn’t mean much to me, but it was amazing how many of my Christian friends and family thought it such a tragedy to have this happening during the holiday season. I just shrugged them off, saying that if you’re Christian, then every day should be a celebration of Christ’s birth, life, death and resurrection. December 25th is just a day on the calendar. Which is how things were viewed by at least one group of Christians that settled this land. The Puritans (at least originally) refused to celebrate Christmas for the very reasons I described.
As it turned out, my son never had to go down to intensive care. They dialyzed in the room that afternoon, and his labs, taken at two o’clock in the morning Christmas Day, showed a slight improvement in liver functioning, and it continued to improve to normalcy with each session of dialysis. It was only about three weeks later that he was able to go home for the first time.
Shortly after being discharged, his kidneys sputtered back to life. But that meant his bladder, which had been more or less dry for about a month, was all of the sudden bathed in urine. So it began bleeding again. He bled so much that we had to return to the hospital every day to get another bag or two of red cells and platelets. Except for the bleeding bladder, he was doing fine. Which reminds me of how I had described his condition to his pediatrician when he had come by to check on him in mid-December: Except for his heart, lungs, kidneys, bladder and bone marrow, he was the picture of health.
The bleeding seemed as if it would never quit. He had to be readmitted to have a cystoscopy in February, and stayed another three weeks with a catheter in to assist in evacuating blood clots from his bladder, along the way enduring another cystoscopy. The doctors finally more or less gave up and removed the catheter, sending us home to bleed through the urethra, which was anyway a better mechanism for expelling clots. Still the bleeding continued, on into the middle of March.
Finally one Sunday after church, which he’d been well enough to attend, it dawned on me. This bleeding is good because it is from God. As oppressive as it was for everyone involved, it had to be a good thing. So I took the opportunity of asking blessings on the meal to give thanks for it. The kids and wife thought I had finally cracked. And in a way, I had. I had decided that I would no longer view the bleeding as something to be overcome, but as a blessing from God. It was perhaps as blessed and close to God as ever I have felt. I finally understood in a practical sort of way what it meant that God, the absolute infinity, was good in all times and all circumstances. I discovered the immense power that is to be found in admitting impotence before God, and praising His absolute infinity for afflictions and blessings alike.
The following Tuesday, the bleeding began subsiding. By the end of the week, it was gone for good. I thanked God for that, too.
That was a little over a year ago. In the meantime, though he’s had his ups and downs, life has been mostly good, and without much pain. He’s suffered through graft-versus-host-disease (GVHD), but that seems like small beer relative to everything else.
Though I haven’t a clue what is God’s purpose behind all this—why he afflicted my son with leukemia; why he saved him from it—I believe, because I know, that it all has been good.
Allow me to end with an excerpt from Psalm 139 (verses 1-18) in which the Psalmist lyrically summarizes the essence of God in ways that my prose could never have so beautifully captured:
O Lord, you have searched me
And you know me
You know when I sit and when I rise
You perceive my thoughts from afar
You discern my going out and my lying down
You are familiar with all my ways
Before a word is on my tongue
You know it completely, O Lord.
You hem me in—behind and before.
You have your hand upon me
Such knowledge is too wonderful for me,
Too lofty for me to attain.
Where can I go from your Spirit?
Where can I flee from you Presence?
If I go up to the heavens, you are there;
If I make my bed in the depths, you are there.
If I rise on the wings of the dawn,
If I settle on the far side of the sea,
Even there your hand will guide me
Your right hand will hold me fast.
If I say, “Surely the darkness will hide me
And the light will become night around me”,
Even the darkness will not be dark to you;
The night will shine like the day,
For darkness is as light to you.
For you created my inmost being;
You knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well.
My frame was not hidden from you
When I was made in the secret place
When I was woven together in the depths of the earth
Your eyes saw my unformed body
All the days ordained for me were written in your book
Before one of them came to be.
How precious to me are your thoughts, O God!
How vast is the sum of them!
Were I to count them,
They would outnumber the grains of sand.
When I awake,
I am still with you.