Saving Baby Joseph



Joseph Maraachli

Joseph Maraachli, born January 22, 2010, suffers from the Classic Infantile form of Sandhoff disease. The thirteen-month-old has been in a vegetative state since last fall, has minimal brain function, and will inevitably die sometime within the next two years. Until earlier this month, Joseph was being kept alive on a respirator in a Canadian hospital in London, Ontario. On February 17, when he developed the need for a tracheotomy, his doctors decided it would be both cruel and futile to subject him to the surgery, and opted to remove him from the respirator, an action planned for February 21 (in a sad irony, the day is celebrated as “Family Day” in much of Canada). At that point an American priest and several “right-to-life” groups, as well as Fox News, intervened at the urging of the child’s parents and managed to have Joseph relocated to Missouri, where he had the tracheotomy performed this week. He will remain under skilled nursing care until his death.

At an early-March rally, a man protests the doctors' refusal to perform a tracheotomy on Maraachli's young son before releasing him into his family's care.

I became aware of this story when it was reported recently at Free Republic, amid much tearful rejoicing and some gloating triumphalism over having defeated the “death panel” that would deprive baby Joseph of his life. Read the first dozen comments or so, and you will see how overjoyed the Freepers were to hear of this baby’s “rescue.”

Now, I know quite a lot about the people who posted those comments. I’ve followed them individually for years, and I understand their political views. They are fierce believers in “cost-cutting”…not just to the subcutaneous level…right down to the bone! But do they have any concern at all for the cost of surgery for this terminally ill, comatose child, followed by keeping him hospitalized on a respirator for a year (possibly two years) until his inevitable death?

Apparently not.

This perplexes me. It’s a conundrum, a true enigma. So I tug at the thread a bit:

  • In 2009, Medicare paid $55 billion for hospital and doctor bills in the last two months of patients’ lives. From the linked article: “That’s more than the budget for the Department of Homeland Security, or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.” The most expensive city to die in is Manhattan, where your last 6 months will cost you, on average, $35,838; the least expensive is Wichita Falls, Texas, at $10,913.
  • More and more older people are demanding—and receiving—major organ transplants, including heart, lung, liver and kidney. “The fastest growing part of our waiting list is older people,” says Walter Graham, executive director of the United Network for Organ Sharing (UNOS), a Richmond, Va. nonprofit that operates OPTN under a federal government contract. “At the end of 1989, only a few hundred of the roughly 15,750 people awaiting organ transplants—about one in forty—was 65 or older; 20 years later, more than 17,700 of the nearly 105,600-person waiting list—one in six—was at least 65 years old.”
  • Heart surgery, including bypass, angioplasty and pacemaker installations, has risen sharply in patients over the age of 80 in recent years. “Over the last decade we are doing procedures in patients once believed to be too old for these procedures,” said chest surgeon Dr. Mark R. Katlic, of Geisinger Wyoming Valley Medical Center in Wilkes-Barre, Pennsylvania. “It’s my belief that this is a positive development,” he said, cautioning that the study didn’t prove the new treatment had reduced the number of deaths.
  • And, finally, new cancer “wonder” drugs are available that prolong life for a few weeks or months, but cost $100,000 for a course of treatment. These drugs are in huge demand, and health insurers are increasingly pressured to pay for them.

All these things cause me to ask two questions.

  1. How can the very group of people who want to “cut costs to the bone” at the same time justify this vast societal expenditure for measures that will, at best, prolong an individual’s life by a few months or years? All those costs for the last six months of life… averaging about $20,000 a person nationwide…are by definition futile expenditures since they are, after all, the last six months of life. Yet these “cost-cutters” would be the first to scream “death panels!” if anybody should suggest this money could be better spent elsewhere, and that people should be allowed to die at home or in hospice with limited medical intervention apart from hefty doses of inexpensive morphine to ease the pain.
  2. I have no data to support this, but I would guess that the vast majority of the cost-cutting death-panel opponents are also practicing Christians. Because I see their obituaries all the time in the paper, I know they believe death takes them to a paradise of eternal joy. So why do they want to fight tooth and nail (and expend vast amounts of national treasure) to delay this longed-for event as long as humanly and scientifically possible…even if that’s just a few months?

I wish somebody could give me the answers.

And to Baby Joseph…I wish you peace, little one, and an end to your suffering, and comfort for your grieving parents.


About filistro

Filistro is a Canadian writer and prairie dog who maintains burrows on both sides of the 49th parallel. Like all prairie dogs, she is keenly interested in politics and language. (Prairie dogs have been known to build organized towns the size of Maryland, and are the only furry mammal with a documented language.)
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41 Responses to Saving Baby Joseph

  1. filistro says:

    I realize this is a difficult topic (though I’m not entirely sure why, since death is a perfectly natural event that happens inevitably to every single person on the planet.)

    As Woody Allen says.. “I have no fear of death. I just don’t want to be in the room when it happens to me.”

    The two enigmas that truly baffle me are why we are prepared to squander so much of our national resource to delay the inevitable, and why those with the firmest belief in a joyous afterlife are seemingly the ones who fear death the most.

    All illumination deeply appreciated. C’mon, set aside the taboos and trepidation. Let’s talk about it!

  2. Monotreme says:

    Just throwing out a hypothesis here, not really sure what the answer is. (That’s why they call it a “hypothesis”, after all.)

    Could this be some sort of anti-science manifestation? Is it the equivalent of sticking your fingers in your ears and singing, “lalalalalala” to avoid the fact that there’s nothing we can do to fix this genetic/metabolic disorder?

    If the Freepers and others of their ilk understood science and medicine better, or at least had an appreciation for what this poor young fellow is going through, would it help?

  3. filistro says:

    Ahh.. at last, somebody brave enough to address the issue! 🙂

    Could this be some sort of anti-science manifestation?

    I don’t think so. After all, it requires considerable scientific and medical expertise to keep a comatose individual alive by artificial means… yet they will fight for this every time as opposed to merciful withdrawal of ventilation/GI tube, etc.

    That’s yet another conundrum. The Freeper argument is that it shouldn’t be up to mere mortals… God is the only one to decide when the time of death should come. It seems to me the logical outcome of that argument would be to remove artificial support and leave it up to God, but they are violently opposed to that course of action.

    I truly don’t understand this. It gnaws at my mind, like all mysteries.

  4. Monotreme says:

    Following that line of thought to its logical conclusion, then, God gave Joseph a genetic disorder that made life impossible.

    I know this isn’t a novel line of argument, but I just can’t bend my mind around that God. I was taught to believe in a God of love.

  5. Monotreme says:

    @fili,

    I still can’t give this line of argument a rest. Sorry.

    I would say that a tracheotomy and forced ventilation are rather obvious and overt procedures, and so don’t require much imagination to see (regardless of the technology behind them).

    Rather, what I’m saying is:

    Could this be a failure of imagination? Just like there are those who refuse to “believe”, in a very true and meaningful sense, in the existence of viruses which cannot be directly perceived, can this be a failure to imagine the abnormal functioning of cells? You can see the trach tube, and see it’s working, but you can’t “see” in any direct sense what the genetic abnormality is doing to poor Joseph’s body.

  6. filistro says:

    I’m trying to understand what you’re saying, Treme. Do you think these people believe the baby is not really that sick and might somehow “get better” if just kept alive a bit longer?

    That would require a stunning level of cognitive dissonance and inconsistent thought… because it would mean they are trusting their child’s life to the very people they believe are telling them the most cruel and awful lies about his condition and prognosis.

    Still… I guess we can never overestimate the capacity for cognitive dissonance.

  7. Jen says:

    This is a difficult subject to discuss particularly when the paradigms for reason are so different. A Cartesian perspective doesn’t mesh with how many Christians view end-of-life issues. I’ll try to though….
    1. Life is priceless, a gift from God that only God can choose to give or take. In baby Joseph’s case, choosing to remove from life support or temporarily extend his life with a procedure are equally appropriate from a Christian perspective. The fury around this case has more to do with “who makes the decisions”. Now I know that the “cutting to the bone” argument is a reality in terms of the $$ and cost to society, and there is a lot of hyprocrisy around this. I personally believe that society has a moral obligation to care for those in need and I think that is consistent with a belief that I cannot determine a person’s worth and usefulness. Suffering engenders many spiritual benefits as well, again, not something that is easily understood. It does not mean that Christians want to suffer or inflict suffering on their children. You would need a whole theological course on the subject to bring meaning to this!
    2. Families ultimately hold the meaning of worldly life and after-life based on their own cultural and spiritual values. I don’t believe governments should take away this basic human right for self-determination. And although it can be tricky, parents in most cases make decisions from deep seated places of meaning and are not frivolous. This family doesn’t want their son to suffer unnecessarily but they wanted the option to care for him with dignity. And that, I believe, is for them to decide. We hope for more collaboration between professionals and family but I don’t think that happened here.
    I have been privy to many difficult decisions around end of life issues for families and professionals. There is a way to create win-win situations, this should never have gone this far for Joseph, his family and his doctors.

  8. filistro says:

    @Jen.. I have been privy to many difficult decisions around end of life issues for families and professionals. There is a way to create win-win situations,

    Thank you for a thoughtful and illuminating response. It’s especially valuable coming from someone who is obviously knowledgeable. If I’ve been insensitive or provocative I apologize… it’s just an attempt to get the conversation started because I believe end-of-life care is something society really needs to talk about, and we are all so reluctant.

    I know we only become aware of the high profile cases that involve conflict, like Baby Joseph and Terri Schiavo. But how often does this happen, in your experience? Are there many families who strongly resist the attempt of medical professionals to remove life-support from terminal patients?

  9. Chip L. says:

    I cannot say what the correct answer would be. I really think it should be up to the parents in this case but in the economic distribution environment of today, this is not possible. If a person is not expected to live, or even have a quality of life, and cannot make those decisions on their own, then the choice would belong to whoever is paying for the service keeping them alive. In today’s world though, there are extremely few people of families that could afford this and I feel this is a fatal injustice to people. I really feel that the severely unbalanced distribution of wealth is the main reason a question like this even comes up.

  10. Jen says:

    @filistro… I am not afraid of the provocative! Just a point of clarification, a God of Love doesn’t want his children to suffer. The theology of sin and free will are in play when thinking about “why bad things happen”.
    But to answer your question about frequency; The situation is very common but there are many variables that determine the outcome. Some families choose to proceed with treatment that to others appears to be futile or pointless based on one’s own views of “quality of life”. Some families choose not to pursue treatment despite differences of opinion that treatment would be beneficial. Both of these scenarios are rather rare. In most cases, a relationship develops between family and staff – discussions about what the family values, what the professionals recommend, etc… and often leads to mutual decision making. And to be honest, lots of children survive and the family has a meaningful quality of life even when the odds were against them. I’ve learned that there are no “right” answers. This is why I am a strong advocate for understanding what life, suffering and death mean for each family. Professionals need to be aware of their own beliefs and how that might play into their decision-making, and then be honest about it. Very important to talk about!

  11. mclever says:

    filistro,

    These aren’t easy issues, and maintaining rationality is difficult.

    We all have stories about how Uncle Eddie was only given three months to live, but he lasted three years (or more!) instead. The story may even be embellished with some exciting adventure(s) he had because he thought he was going to die earlier than he did. So, when the doctors tell us Aunt Sally is going to die, we all hope they’re wrong again.

    There’s a LOT of wiggle-room in the answer to how much longer the patient is expected to live, so much so that many doctors are reluctant to set a deadline. Unless they’re giving less than a couple of weeks, there are too many variables to predict accurately. Even if they’re quoting statistics that say 95% of patients in this situation only last three months, we all like to think that our loved one (or oneself) will be the exception that lives longer than expected. And, sometimes the doctors are just wrong. I’ve seen it.

    I’ve seen someone fighting tooth-n-nail to hang in there for years under the constant prediction of “just another month or two at most.” I have a grandma who went snorkeling in the Caribbean a year after doctors were sadly shaking their heads and advising grandpa to start making funeral arrangements. I had a friend with a heart condition who was supposed to die by age eighteen, but he made it to thirty-three because neither he nor the doctors gave up. (And, I’ve also seen a cancer patient go from thriving to gone in less than two months, despite doctor predictions of remission and recovery, so the other side is possible, too.) That level of uncertainty offers hope, sometimes irrational hope.

    In cases like baby Joseph, where we’re dealing with a comatose, brain-dead, terminally ill patient who would die almost immediately if removed from life support and will die within a couple of weeks even with the best life support possible, there I have a difficult time arguing for extending his suffering. Remove the tubes and let him die in peace, for pity’s sake! We’d do it for Fido or Fluffy!

    But for the cancer patient given six months or so, for the heart patient or the kidney patient or liver patient in need of a transplant, for all of those others with a potentially terminal condition that isn’t in its final throes, I would have a really difficult time denying top-of-the-line medical care. Six months could turn into sixteen years. A transplant could give decades of new life. 80 years old isn’t the same today as it was fifty years ago when they did the first heart transplant, because living past 100 isn’t as rare as it used to be.

    Now, I’m not saying we should give all patients every possible treatment up until the very last second of life. The patient’s overall condition, likelihood of recovery, desire for treatment, general prognosis, and other variables too numerous to list should all be taken into account when deciding what, how, and how much to do. Hospice has a place, too. I feel that these decisions are very individual and case-by-case, which makes it difficult to establish guidelines, such as removal of treatment if the patient has less than X months to live. Given the uncertainty inherent in such predictions, I’d hate to think that we denied treatment to someone who might have had several years left if they’d been given a chance. (I’m assuming a desirable quality of life. Multiple years in a persistent vegetative state isn’t “life” in my book.)

    As you say, these are difficult topics. I don’t have an answer.

  12. filistro says:

    @Chip: I really think it should be up to the parents in this case but in the economic distribution environment of today, this is not possible.

    That’s another excellent point. In fact, there are very few families who could afford the cost of keeping a terminally ill person alive by artificial or heroic means. I’m sure the cost could well run into millions of dollars.

    So when this is demanded and acceded to… society pays. As a result, society must set guidelines to decide at what point artificial means should be withdrawn, or heroic measures denied. Otherwise it is conceivable, with modern medical science, that we will create a burden our economy could never bear. It can hardly bear the burden now… or even manage to look after healthy people with acute illnesses that could readily be cured with proper care.

    So the question becomes… who sets the guidelines? And do the setters of such guidelines then automatically become “death panels?”

  13. Jen,

    I don’t believe governments should take away this basic human right for self-determination.

    Nor do I, but then things get sticky. Let’s start by taking government out of the picture, and just focus on, say, Cigna Health Insurance. If they refuse to pay for the procedure, are they taking away the parents’ right to self-determination? Does the freedom of choice extend to making Cigna cover whatever medical procedure the covered party wants?

  14. Monotreme says:

    filistro says:

    That would require a stunning level of cognitive dissonance and inconsistent thought…

    Certainly not the first time we’ve seen this with end-of-life issues, not just in other people, but in me and my close family members. What I think and believe theoretically and what I think and believe practically can sometimes be two different things. As a scientist, you either learn to embrace and manage cognitive dissonace (about which I’ll write an article later) or you get steamrolled by it. That’s what I’m saying: some people can deal with cognitive dissonance better than others.

    because it would mean they are trusting their child’s life to the very people they believe are telling them the most cruel and awful lies about his condition and prognosis.

    On the contrary. The doctors and nurses that are telling them that Joseph has this disease are the same ones that are “trying to kill him” by removing life support. (I want to note that I am assuming I know the parents’ view, which I do not, so this part is pure speculation.)

    On the other hand, we have another set of doctors and nurses in Missouri who are willing to participate with the parents in their willing suspension of disbelief. They are the heroes of this piece, right?

  15. Monotreme says:

    @mac,

    Excellent points as always. I’d just add that there is a critical difference in the scenarios you pose.

    In the case of an adult, they are fully autonomous and have the ability to participate in decisions about cost/benefit ratios (both in terms of dollars and quality of life). I’m not aware of any cases that have become national controversies where a patient called for hospice (at one end) or called for extraordinary measures (on the other end) and did not get their wishes, at the end of the day.

    The problem is when the adult patient is no longer autonomous (Terri Schiavo, my aunt with Alzheimer Disease) or when the child (Baby Joseph) has not reached a state that our ethical framework recognizes as autonomous.

    In the case of Baby Joseph, he must rely on his parents to make the decisions for him. Sadly, in their grief and pain, they can’t be trusted to behave in a rational manner. Both “sides” then launch into agitprop and use this poor family as props in a larger politicoeconomic drama. It’s just sad, all around.

  16. mclever says:

    @Monotreme

    I agree that there is a critical difference between autonomous adults (or youth) facing these decisions for themselves and the situation where the patients are no longer cognizant or capable of making any determination for themselves. My intent was to highlight that difference in reaction to where filistro said, “All those costs for the last six months of life…” as if six months was a valid, automatic sentence to death. That assumption sets off all sorts of alarm bells for me, because I know how utterly arbitrary “six months” of medical predictions can be. Filistro seemed to be suggesting that she would advocate limited medical services for people given “six months” to live. If that had been done for my friend from high school, he’d have never seen his 18th birthday, let alone his thirtieth. A “few more months of life” can stretch into years.

    I agree that this is very different from cases of people (like Terry Schaivo) who are in a persistent vegetative state with no prognosis for recovery. I blame Hollywood and their fetish with coma recovery stories. Even if someone were to spontaneously revive from a long-term coma, their cognitive functions would be undeniably impaired, and it’s doubtful they would even be able to function. Not the “wake from a coma and miraculously find love 20 years later” fantasies that we see in movies.

    There’s a point in there somewhere, and it’s probably different in every case, where the chances of recovery fall too far. Technology may be able to keep someone alive virtually indefinitely, but there should be an admission at some point that the patient has reached a point of no return. I balk at “six months to live” because that’s way too arbitrary. But, if they’re talking in days or a couple of weeks, or if the patient is in a long-term, unrecoverable coma…

    Nope, I still can’t draw a firm line in the sand. End of life scenarios are too fraught with uncertainty, false hope, false determinism, suffering, remission and recovery, false recovery, and all sorts of other complications that make each one unique. Although, maybe there’s a point after two or three years of coma care, where the expense should be borne by the family if they want to keep the person alive rather than by the state/insurance. I don’t know the answer, but I will admit these questions need to be addressed by whoever is paying the bills.

    Oh, and with regard to the statistics about the majority of expenses occurring during the last two months of life… Can I just say, DUH! Because that’s when the fatal complications, failures, accidents, etc. all happen. At first, the doctors probably don’t know if this incident will be the one that finally does you in or not, so they do what they can to try to save your life. Sometimes it works, and then you get hit by a bus.

  17. filistro says:

    @Mac.. the “final six months” is not arbitrary, it is statistical and retrospective. After one has died, this is what his/her final six months of life have been determined, on a national average, to have cost.

    And what this means, in the real world, (from the article I linked to) is this : “If you are dying in Miami, the last six months of your life might well look like this: You’ll see doctors, mostly specialists, 46 times; spend more than six days in an intensive care unit and stand a 27% chance of dying in a hospital ICU. The tab for your doctor and hospital care will run just over $23,000.”

    This staggering cost simply cannot be sustained though the boomer generation. Maybe I shouldn’t have used Baby Joseph as the initiating case since his is really an anomaly (as Jen has eloquently pointed out). Maybe we would be better advised to look at the cost and scope of terminal care in general.

  18. mclever says:

    @filistro

    I meant that if you take that retrospective cost and project it onto patients where doctors are predicting ‘six months to live’, then you will be unfairly condemning many people to an untimely death due to improper medical care that might have extended their meaningful, productive lives for many years.

    We must be very careful about projecting retro-determined costs onto current patient prognosis.

  19. mclever says:

    People aren’t produce with an expiration date. Just because the doctors are guessing that you might have 3 months or 6 months, that doesn’t mean that on September 25th, you’ll keel over dead. You might die next week (potentially from something unrelated to whatever prompted the 6-month prognosis), and you might still be alive and kicking in 2016 with your 6-month terminal problem in semi-permanent remission.

  20. filistro says:

    @Mac… We must be very careful about projecting retro-determined costs onto current patient prognosis.

    That’s precisely what I’m asking. HOW careful? To the point of giving heart valve transplants to octogenarians? $100,000 worth of drugs to a patient with Stage 5 lung cancer? (Both are already happening, and with some frequency.)

    Where do we draw the line… and WHO DECIDES? Because if we just give everybody whatever they want out of “respect for human life” we will soon be (or arguably we already are) in a situation that is utterly unsustainable.

  21. People aren’t produce with an expiration date.

    What we need is a Death Clock, like on Futurama:

  22. mclever says:

    @Michael

    I was thinking Logan’s Run.

  23. Brian says:

    I don’t know what the right way to handle this is, but we can’t keep it up for the baby boomer generation. If every single one of them/you is going to cost us $20k and Google says there are 72 million left alive, that’s $1.44 trillion dollars. Hell, even it comes to a third of that, it’s still ridiculous. And it’s only going to get worse with more advancements in medicine that can keep people alive even longer.

  24. peged says:

    This is truly complex and is just the sort of conversation we should be having. As a boomer, a retired nurse, and person who fairly recently lost her father at age 86 (who had lived several years with progressing Alzheimer’s Disease), I’ve thought about this a lot from several perspectives and I have no real answers. All I know is decisions will be made by someone, and they may be VERY costly. We should all consider our respective fates and make our wishes known at least generally to our closest family members as well as drawing up living wills and other healthcare directives. These conversations can help family members make decisions that are incredibly difficult and, in my opinion, should be considered a moral if not legal obligation of all adults. I had all the rational understanding to feel confident that not treating my Dad’s pneumonia with antibiotics was the “right” decision in this circumstance, but emotionally it was extremely difficult. If my siblings had not all agreed, I could not have done it, even though I held his Healthcare Power of Attorney. This is an interesting intellectual exercise but it WILL get personal for every one of us eventually. We need to consider it this way. I know that is hard for you young things who still think you’re invincible. Thank you, Jen for your sensitive post above. Supporting families as they struggle with these decisions is essential, and I think can often lead to reasonable approaches.

  25. frk says:

    I’ve heard the God of Love mentioned several times here. Jen says “He doesn’t want his children to suffer.” The following is tangential, and I’m not trying to be confrontational here, but the God I was raised to believe in was also all-powerful. I therefore reasoned that, if He wouldn’t want his children to suffer, they wouldn’t suffer. Ergo, He must want his children to suffer. That conclusion was one of the first steps on my path to agnosticism.

  26. filistro says:

    frk… apropos that…

    A few weeks ago at The Corner, Jonah Goldberg posed a philosophical question that, when asked, is sure to drive your religious friends crazy.

    Can God make a suitcase that’s so heavy He can’t lift it?

  27. dcpetterson says:

    Filistro, the suitcase thing actually an old problem. (Usually asked with a “stone” instead of a “suitcase.”) The solution is, Sure He can make something so big that He can’t move it. Then He makes Himself stronger.

    frk’s related conundrum is known as “the problem of Evil.” If God is all-good and all-powerful, why does He allow evil to exist? There are various solutions to that, ranging from definitional (we’re too small to realize these things are all done to achieve a greater good; therefore, they are not evil) to existential (we’re looking at it wrong; God isn’t actually all-powerful).

    The ancient Gnostics went with an explanation of the latter type; God isn’t all-good. Most modern Christian denominations go with variations on the first type; evil exists to give us a choice, so as not to interfere with free will, the maintenance of which is a greater good than any passing suffering.

    But this then gets into the related problem of free will. If God is all-knowing, then He already knows what you’re going to decide. You therefore cannot decide any different from what He already knows. Therefore, free will does not actually exist. And if free will doesn’t exist, we’re right back to that problem of evil, because the primary excuse for allowing evil no longer holds.

    I tend to fall back on existential answers. If there is a god of some type, then that god does not conform to the omniscient, omnipotent, all-good, all-caring definition of Zoroastrian/Christian philosophy. Or else the limited 3 pounds of brain matter we carry around just can’t completely comprehend a being that singlehandedly micromanages every atom contained in a 6-billion-year-old universe that includes trillions of galaxies, each of which potentially has a billion inhabited planets, each of which potentially contains billions of minds like ours — not to mention the thousands of billions of other, lesser inhabitants (from amoebas to dinosaurs).

    And if that’s the case, we’re back to the problem of evil — for why would a just and loving Universal God of that scale saddle us with the need to understand things that are so clearly beyond our comprehension? It just seems cruel.

    More likely, any gods that exist are limited, the sort we see in polytheist societies, the kinds that humans have acknowledged for about 48,000 years of the roughly 50,000-year existence of Homo sapiens sapiens.

    Sorry to launch into theology. But it’s sort of my thing.

  28. filistro says:

    DC.. I think the issue of Baby Joseph’s suffering, the Holocaust, the poor among us, etc, is all explained by the fact that God certainly exists, but he’s not interested in the minutiae of our lives.

    Not because he doesn’t love us, but because our tiny human lives are just a minuscule blip in the vastness of the universe(s) and the eternity of timelessness. If we truly have “eternal life”… what does it matter, really, what awful things happen to us down here?

    Just think about eternity for a moment. (On second thought, don’t,.. because it’s like looking directly at the sun. It hurts your brain and can possibly do lasting damage.)

    But if we really have eternal lives, then this tiny adventure on Earth is nothing more than a fragment of a dream on a single night in the vastness of whatever life we’re living. We’ll wake up somewhere in the morning, look back on our brief Earthly adventure and think… “Well, THAT was kind of interesting…”

    And maybe when we consider it as we sit over our morning coffee in whatever place we find ourselves, we’ll muse over what happened to us here (for good or ill) and learn a tiny bit more about love. And that will have been the purpose of it.

  29. dcpetterson says:

    Filistro, I wrote a story rather like that once, a young-adult novella. It was about a piano prodigy, a young child with a fatal disease, struggling with the question of why he was so very good at playing the piano. What purpose does it serve, if he’s just going to die anyway?

    He and his close friend had shared fantasies and dreams about sentient white blood cells that were trying to understand the nature of their own existence within the boy’s living body. Can a single cell in your body understand the magic of music? Can it comprehend its place and purpose within your being? Does not the life and death and triumphs and suffering of each individual cell serve some greater reason, far beyond their comprehension?

    What purpose does music serve? Why did that little boy play the piano? What is the purpose of a beautiful young life cut short?

    I didn’t try to answer these questions in my story. I think a writer should be the Tester, not the Decider. The purpose is in the journey.

  30. frk says:

    “Just think about eternity for a moment.” A question that I’ve posed to ministers: “If God could create Heaven and Earth and all therein, and create Man in his image [whatever that means exactly] why bother to create Earth at all? Why did He not create a fully-populated Heaven full of believers and a pre-populated Hell full of non-believers? Since He can determine whateverHe wishes , including creating a rock He cannot lift (knowing full well that any time He wishes to He can make himself stronger) He should have no problems with the “monumental” task of skipping our earthly existence and sending us straight to Heaven or Hell .

    A failure of the imagination seems to prevent our acceptance of the possibility of a Heaven where the inhabitants do not need to go through hell on earth simply to learn the difference between good and evil, happiness and sadness, pleasure and pain, justice and injustice. God could create his Heavenly flock with that knowledge as part of the basic package. Indeed, why would they need such knowledge other than for the purpose of forcing us to admit our weakness in the face of God, and giving our eternal allegiance to Him? That purpose seems to dominate the Ten Commandments. In the holy text we find “I am the Lord your God” “You shall have no other Gods before me” “observe the Sabbath day and keep it holy, and a couple more, before we get to what I believe should be the meat of the Commandments: “Thou shalt not kill” “Thou shalt not steal” “Thou shalt not commit adultery” and a couple more.

    Ultimately, I find my speculation as convincing as anything I’ve heard or read. It seems to me where we are, on this earth, comes down to that: Do I follow a belief based on belief , on our inability to understand a mystery, or do I keep searching, reaching for something beyond that?

  31. frk says:

    Oh. About two hours ago I attended a Lutheran funeral for our neighbor of 35 years. So, very recently I’ve been thinking about eternity.

    I love church ritual. I feel a sense of calm there. When I occasionally return to the church, I always find my self envying those who believe. I envy those at the service who have been blessed with the capacity to Know, the family, friends, and acquaintances who can, I assume have that burden of grief so quickly lifted. But right now I can’t be that person. Before, during, and after I was not so willingly baptized, at age 12 in a small Baptist church I’ve seen no signs; I’ve never felt the presence of God wash over me; I can’t , as my mother did, feel that all the ugliness can be excused by all the beauty around us. and that that should bring me to God.

  32. filistro says:

    frk… I think our whole concept of religion has been corrupted by the “heaven and hell” myth which was essentially designed to keep primitive and volatile peoples under rigorous social control.

    The whole idea of a God who punishes you if you’re “bad” and rewards you if you’re “good” is utterly antithetical to any notion of love. It’s the theological equivalent of “Just wait till your father gets home! You’ll be sorry!”

    No wonder the “faithful” who buy into this wind up so terrified of death that they will force a helpless baby to endure two years of intubation, simply to hold death at bay. As Mac eloquently points out…we wouldn’t treat Fido or Fluffy with such cruelty.

  33. mclever says:

    @dcpetterson

    Would it be possible that an omniscient god could know all of the infinite possibilities from any choice (and all of the infinite choices available at any instant) without actually knowing the decision itself until it’s made? If so, then that type of god could technically know everything while still allowing for free will.

    Not saying that’s the case, but just wondering what that possibility would do to the “if god knows everything, then he knows your decisions, therefore your decisions aren’t really free” line of reasoning.

    (I really don’t have time to discuss theology today, but I…just…can’t…resist!)

  34. mclever says:

    @filistro

    Fear of hell doesn’t explain the desire to keep a helpless baby alive in a state of suffering, because most who have a devout belief in heaven and hell believe that all children below the “age of reason” are automatically destined for heaven.

    We could debate what is meant by the “age of reason,” because the accepted understanding of that line ranges from about age six up to the mid-teens, depending on various traditions or interpretations. But, regardless of where a particular sect draws that “age of reason” line, infants almost universally fall below it. We could also debate the “original sin” concept that led to the baptism of infants, but a baptized infant below the age of reason would also be universally acclaimed as heavenbound.

    So, fear of hell doesn’t explain the irrational desire to squeeze every possible second of life out of a terminally suffering infant. More likely, it is just an irrational desire on the part of the parents who are unwilling to let go. Losing a child is extremely difficult, and we humans are very adept at denial.

  35. Number Seven says:

    If there is a god, it is probably a group of gods wagering quatloos on the various outcomes of our history.

  36. frk says:

    What would the religion be if not for the concepts of Heaven, Hell, reward and punishment?
    Pascal’s Wager explains this best, I believe. Its main argument rests on seeking reward and avoiding punishment. It’s been effectively refuted, but that’s not my point here. Whether you fall for the gambit or not, it still, I believe, represents a mode of thinking that bolsters the belief of believers and pulls many, many non-believers into the fold.* #
    A “wager” on the existence of God . . . How many, in their heart of hearts, know that’s exactly what they’re doing and confuse that with true belief in a Living God?
    I personally don’t want to pursue a belief based on a wager.

    * #Please don’t misunderstand. I do not in any way intend to diminish the belief of those who come to God out of true need. If they choose His way to survive in the face of overwhelming worldly difficulties, their choice seems quite reasonable.

  37. filistro says:

    @mac… I don’t think it’s specific to this case. Rather, I believe the “hellfire and brimstone,” “punishment-of-a- jealous-God” mythology has created a pervasive, systemic fear of death within our culture that is really quite unique to Christianity (well, also to Islam which embraces a similar ethos.) And that’s what we see in our end-of-life social struggles.

    Many other religions and belief systems enable their adherents to approach death with serenity, or at least some equanimity.

  38. frk says:

    mclever: It’s not easy to separate the consideration of the condition of Joseph Maraachli from the subject of theology, particularly for people who are wending their way through this life still seeking an understanding of the human condition.

  39. mclever says:

    @frk

    I completely understand why the theological topics arise when discussing a situation like Baby Joseph’s. I really like theological discussions, so I’m just trying not to get too involved in this one lest I get too little work done and kill my weekend…

    dcpetterson’s the kind of thinker I like to engage, so it’s been hard for me to resist this thread this afternoon.

  40. dcpetterson says:

    @mclever,
    Would it be possible that an omniscient god could know all of the infinite possibilities from any choice (and all of the infinite choices available at any instant) without actually knowing the decision itself until it’s made? If so, then that type of god could technically know everything while still allowing for free will.

    Yes, this is one of the formulations to deal with the omniscience-vs-free will problem. To my mind, it sort of sidesteps the issue (as does the solution I described to the rock-too-big-to-move problem).

    It’s one of those “it depends on what the definition of ‘is’ is” sort of things.

    “A thing that doesn’t exist yet” can be said to not be a “thing” — and, therefore, unknowable, even by God who knows “everything”.

    But if we’re going to say that “God doesn’t know what’s going to happen,” then that limits God to past and present. It puts the future in doubt, and destroys the principle behind, say, Biblical prophesy.

    There is a similar problem with the “big stone” solution. Okay, so God can make a stone too heavy for him to move now. But can he make one heavy enough that he can’t move it ever, no matter how strong he makes himself?

    The only real solution to these issues is the “time vs eternity” solution — which maintains that all these examples are due to our limited understanding of things like time, space, and logic. In a true Einsteinian universe of four dimensions, unlimited in time and space, existing forever and always — in this sort of Universe, the past, present, and future exist all at the same time. There is no motion, there is no change, there is no “now” and no “then”. These concepts are illusory, and they exist only because we move through time. For a being that exists outside of time (which is the true meaning of “eternal”), a question such as “Can you do X?” is utterly meaningless. Either ‘X’ exists, or it doesn’t; and there is no “do” because there is no time, no change from the state of “not-done” to “been-done”.

  41. frk says:

    I’m getting dizzy.

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