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First Published May 1, 2008

6 He that ascended up on high, as also he descended below all things, in that he comprehended all things, that he might be in all and through all things, the light of truth;

7 Which truth shineth. This is the light of Christ. As also he is in the sun, and the light of the sun, and the power thereof by which it was made.

32 And ye shall know the truth, and the truth shall make you free
John 8:32

We are emerging from an age that put value above all else upon the ideal of truth. But what exactly is truth? Is it absolute? beauty? freedom? enlightenment? facts? data? reason? principles? unchanging? Is something that is true for one person necessarily true for another? Is truth for ourselves at one point in time necessarily true to ourselves at another point? The terms modernism and post-modernism are used and abused in these kinds of arguments all the time. I am not sure what these terms mean exactly. To a certain type of person post-modernism is moral relativism and the devil, while to another type, modernism is rigid, unyielding, black and white thinking in absolutes. In the end I think both sides are largely talking past one another and caricaturing the other side. This is not my desire. I just want the truth.

What’s that you say Jack, “The truth!? You can’t handle the truth!” Perhaps.

For me, the problem with perceiving truth lies with the mind.  If certain neuroscientists are to be believed, consciousness itself is an illusion. Our will is a delusion and trick of natural forces. While this is all quite controversial and will have people arguing for a long, long time, the limits of our thinking are less controversial. We will fill in missing articles to make sense of things whether it is sounds or vision, we fill in missing detail in an attempt to make cohesive sense of what we see or hear, even if it isn’t there. The simplest example of this is our blind spot, the hole in the retina where the optic nerve leaves the eye. We don’t see that we can’t see it because our mind fills in the space.

But it doesn’t end there. It turns out that memory is the same way. Studies have shown that eye-witnesses are unreliable. An astute reader (Thanks, Glenn) pointed me to the one of many authors involved in 30 years of memory research that shows being fed misinformation clearly and reliably distorts our memory. Additionally, certainty itself has proven to be an emotion. We like to think of emotion or feelings and cognition and logic as separate but in reality they are intricately intertwined. If our own senses, memory, emotions, and logic are untrustworthy what does that leave us with?

Well I guess there is data, measurement, and Science. The problem here is that data and testing hypotheses requires interpretation of data. Data and measurements mean nothing in and of themselves. They require interpretation. Designing experiments involves something even more mysterious, imagination. Furthermore, it turns out we are learning there are limits to what science can know.

Newton’s laws of motion were long thought infallible until Einstein proved there are instances where they fall apart. However, to our experience Newton’s laws are good enough to at least get us to the moon. For all Einstein’s and modern physics work we still haven’t figured out what gravity actually is and what causes it. The fact remains, we can make little sense of physics without it.

Believing the Earth is flat works for what we need until we can fly around the globe or become so economically linked as a planet that we need time zones. The sun revolving around the Earth seems common sense to direct observation. However the assumptions mankind made based upon this were shattered by Copernicus, bad behavior ensued.

Heisenberg learned by equations that it is impossible to predict where a particle is and what it’s momentum or speed and direction of movement is at the same time, developing what is known as the uncertainty principle. It is somewhat esoteric but basically it means mass and momentum of the super small subatomic particles is apparently random.

It also turns out that understanding the universe itself has hit a brick wall, as there is a moment in time in Big Bang theory that all of our physics mathematically breaks down. It also turns out that we are just receiving light from the edges of the perceptible universe from so long ago that we truly have not the slightest idea if these conditions still hold now. If the power of a theory comes from ability to predict, I am afraid there comes a point where we are unable to predict anything.

Which brings me to God. Yes, I know it is a matter of controversy to his existence and there is limited evidence, but for me, like gravity to physics, nothing makes sense without Him. To the critic, religion and myth is just a defense mechanism we use to make sense of the world, true or not, much like the tricks of the senses I linked above. This may be. I cannot prove otherwise conclusively, but it also appears to me that the need to do this is an inseparable part of our makeup as human beings. If I am to ever abandon this part of my humanity, I will need one whopper of a reason to do so.

If we take it on faith that God exists, clearly, it is undeniable that we, as humankind, cannot comprehend all that God can comprehend. This being self evident, why even bother trying to learn of God?

I come from a faith that teaches clearly that God reveals truth to us as we are able to bear it. This is where spirit, intuition, zen, and all kinds of religious, mystical, or new agey concepts come in. In Mormonism, God wants us to know and understand him, so he comes down to our level and opens truth to our mind as we are prepared, as we seek it, as we will let him, and as we exercise faith.

This communication is described as concepts that enlarge the soul, burn within us, bring inner peace, open our understanding, or ring true. It is subjective, but more than emotion in my experience. I don’t believe we yet have any way to throw out the subjective and inner workings of the mind out as invalid. It seems plausible that, like Newtonian physics, this is good enough for God’s purposes. This method of obtaining truth is messy to be sure. It leads different people in seemingly different directions. Religion has historically led many to conflict, violence, abuse, and tyranny all done in God’s name.

In spite of all of this, I still feel that revelation is central to how we obtain the intangible truths of our existence. There is a way to avoid the hazards. The key is humility. We have faith and hope in what we have learned, but we also realize that our picture is imperfect, as Paul wrote, we see through a “glass darkly”. We do not force our understanding upon or denigrate the ideas others who disagree. Instead we share what we believe and listen as others do the same.

When we find something that enlarges our soul, stretches our mind, and enriches our life, I believe we have to hold onto it. To refuse to do so is to betray ourselves. I believe we have to remain humble, ready to accept there may be many particulars in which we are mistaken, but I also maintain faith that core truths will remain. We can learn much from diversity. Different cultures, different faiths, different perspectives are a strength when it comes to learning truth, if we can just allow ourselves to glean from them. It is a tricky balance. Too often people act out of the fear that to acknowledge the other is to deny yourself. If there is one observation I have made in life it is that fear can make Man one ugly animal.

I believe that spiritual truth is not linear or absolute. We are all on a journey to somewhere. Like any good Mormon I have faith that we are in the process becoming something greater. Some principles, though formative and helpful initially in the journey, we may outgrow as our understanding increases. Shedding them can be very frightening or painful. I cannot believe that this makes such principles untrue. They are a necessary step to greater understanding.

Among Christian religions, Mormonism is unique, in that, while affirming that Christ is the way, the Truth, and the life, and that no one can return to the Father but by him, we also believe in a mechanism for all mankind to receive that gift eventually if they desire it, even if they do not reach that point in this life. Joseph Smith taught that we embrace all truth, wherever it may be found. There is a wonderful universalist, humanist streak in Mormonism that rings very true to me. As I study truth, I find it everywhere and yet I know I have much yet to learn. For the few who are still reading this lengthy, wordy beast of a post, best wishes to you in your own spiritual journey.

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First Published April 25, 2008.

 

Becoming the parent of a child with a genetic disease is a harrowing experience. This is likely more true today than it has ever been. We are hardwired to want the best for our children. Discovering they have a life altering condition pulls the rug right out from under parents. Discovering that the very genetic blueprint they passed on to the child is the problem makes this “act of God” personal. Suddenly, it is your fault.

Child birth is an exciting time full of anticipation. What parents often don’t anticipate is the possibility that anything could ever go seriously wrong. I took a first year medical school genetics elective right at the time my wife was expecting our first child. Note to all medical students. DO NOT EVER do this. It is a bad idea. It brought me right down to Earth real quick. It also caused me lost sleep, racing thoughts, and all around needless worry.

I also witnessed firsthand some real parental anguish.  My heart ached for them.  They became very caught up in questions like what the diagnosis actually was, what the chances of having another child with the same problem were, and do they need to have family members tested.  The more understanding we have, the more directed the questions and more uncertain the future.

      This has created or at least accentuated a new phenomenon, gene guilt.  In college I had a cell biology professor who referred to himself as a “genetic cess pool.”  on account of a daughter with spinal muscular atrophy, type I, a fatal recessive genetic disorder.  The irony is that his genes were likely no worse than anyone else’s.  It just happened that he married someone with a matching bad gene.  We likely all walk around with at least a few faulty genes, usually more, among our thousands.  Any one of these could result in disease if we concieve children with someone with the same exact hit.  The odds of that are low, like winning the lottery, only the prize is heartbreaking.

   Some genes are bad enough that disease shows up with just one copy, but for unknown reasons is super mild in some people, who may go undiagnosed until half their children get it.  Other gene mutations, called nucleotide repeats actually worsen through generations until the unlucky one gets disease, and then their children get worse disease.  With X chromosome disorders, the Mother passes a gene to her sons that caused her no problem because she had both a good and a bad copy.  Problem is her son gets the bad gene, and has no second copy because he is male.  Other diseases of the mitochondria are given strictly from the mother.  All of these situations can worsen the guilt and crush the self esteem of the parent. 

     Science compounds the problem with evolution.  We learn that nature’s way is survival of the fittest.  Bad genes are selected out of populations naturally.  With medicine, we have sort of beat evolution over the head by outsmarting nature, at least temporarily.  People with chronic conditions are living longer and better than ever before.   It is a natural step therefore, once we know about a bad gene and see its effect, to wonder if we should not select it out of the population by not having any more children.  This is unnatural selection, if you will.  We reason that we must do something nature has been doing anyway without our input.  Some reason that if they have children they are threatening the gene pool of the race.  I think it is a very flawed mindset.

      Certainly many disagree with me.  During the above mentioned genetic rotation, I met a teenager who was diagnosed with Li-Fraumeni syndrome, a disorder that increases susceptibility to cancer.  Her parents died at a young age, and she was being raised by an aunt.  The conversation between them was profound.  This patient felt emphatically that her life was not a mistake.  To suggest this was perhaps even offensive to her.  Who would want to think their life was a mistake?  For this reason, she insisted that she intended to have kids if the opportunity arose.  The Aunt was mortified. 

      Granted, this patient had not yet experience the ravages of cancer, perhaps her point of view was flawed, but I think she had a point.   This is a tough issue and certainly there are no easy answers.  But I believe we often overestimate the suffering of others.  I can’t help but admire her for realizing she is more than her genes.  Her life was more than her disease.  Individuals have much more contribution to make to society than just their genome. 

    I think this is a point too many people miss, especially us doctors.  We are consumed with patient’s conditions.  The disease too easily become the only reason we relate to them at all.  We start to refer to patient’s who happen to have Cystic Fibrosis as CF’ers, Sickle cell disease as sicklers, with Asthma as wheezers, etc. al etc.  It obscures the fact that we a dealing with living, thinking, feeling human beings.  We physicians wan’t to prevent disease, not enable it.  We grow weary of those who do not take care of themselves and present us with disease.  Too many doctors fall into the snare of exasperation and contempt for the reproductive habits of those we care for.  

   We are too obsessed with perfection in this country.  We airbrush pictures of models, causing young women to starve themselves to meet a nonexistent ideal.  We celebrate beauty, strength, speed, endurance.  We reject difference.  It is a natural social response with ugly consequences.  Just as the sick, albino or deformed chick will be relentlessly assaulted by the rest of the brood, we can have a visceral revulsion witnessing malformation, scarring, or amputation.  For me, this is the human flaw we really need to work on, not the diseases.   As we gain the power to manipulate our genome, how will we decide what is appropriate to treat and what is not.  Short height is now an indication for human growth hormone therapy.  I find that disturbing. 

    We need to learn to see the beauty in our flaws.  Only then will we really see the beauty in humanity.  I believe our imperfections are a centrally important part of our being  here in the first place.  Forty years ago, a French philosopher named Jean Vanier founded a religious community devoted entirely to living and worshipping among developmentally impaired adults.  Speaking of Faith featured L’arche in a podcast with some profound, moving, and amazing descriptions of what we can learn from them.  I encourage everyone to take a listen. 

     The dystopian movie Gattaca takes a look at just where a culture of perfection can lead.  It isn’t pretty.  In the 1930s a madman rose to power with a dream of a blonde haired, blue eyed master race setting off the most massive conflict in world history.  Will we as a people fall prey to the same ideas as we develop the power to actually make it happen?

First Published January 15th 2008.

     I work up close and personal with disability everyday. When people found I was going into child neurology their first question was often, “why”? I often hear about how it’s too sad or too depressing.

Fellow physicians struggle with the fact that there often isn’t anything we can do to fix severe cerebral palsy or neurodegenerative disease, to name but a few. There is something in our nature that makes us shrink from the deformed and debilitated. Read the rest of this entry »

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