The Sum of Science & Spirit – Part 3

Click here to read Part 1.

Click here to read Part 2.

I’m comforted, too, that there’s empirical evidence to support this symbiotic experience. One need only look deep within ourselves—at the human brain. It’s divided into two anatomical parts: the left and right hemispheres. The left primarily handles language and logic related tasks such as communication, computation and fact retrieval. The right tackles very different kinds of tasks such as taking in and making sense of visual information, making comparisons or estimations and processing music. In a much more basic sense, the left side is the workhorse and the right is the “touchy, feely” side.

One might assume that such vast differences would naturally cause dissonance. But ironically nothing could be farther from the truth. The two hemispheres work in an intricately cooperative relationship, carefully balancing tasks and sharing information. Ultimately, the presence and functions of both sides are necessary. It’s this asymmetry that provides a much more full, rich human experience. And personally, I needn’t look far for a verifiable example of how exactly this mysterious relationship works.

“I not—ng—ng—do that!” Mark cried out as tears formed white trails down his cheeks. “I not!”

He was upset, honestly surprised at what his own tiny hands had done. He couldn’t read it. But he’d begged to hold my Bible. He’d seen me pour over it so many times. And he, too, wanted the experience of looking at its beautiful pages. So, I had placed it in front of him on the floor with a gentle reminder to be very careful. But the gilded pages were impossibly thin, nearly translucent. And as soon as I heard the sound, I knew what had happened without even turning around. Suffice it to say that a few of the pages in the book of Zephaniah will never be the same.

“I not! I not, Momma!” he continued to cry as he ran out of the room.

The left side of my brain immediately took Mark’s words at face value. How could he outright deny doing it?  I heard it. I saw it. The cold, hard evidence was right there. But the right side of my brain interpreted something just as important: Mark’s tone and feelings. I was simultaneously receiving and processing two different sets of information, yet both sides of my brain were working together in a concerted effort to piece together the entirety of what Mark was communicating. The hemispheres inside my head weren’t in conflict. There was immediate and simultaneous synergy.

“Mark?” I said quietly as I peeked into his room. “You didn’t mean to do it, did you?”

To model clear articulation and speech patterns for Mark, I’d gotten into the habit of repeating what I thought it was he was trying to communicate. And this time was no different. Sure, his words clearly stated that he hadn’t done it. But his overt remorse and shame told a completely different story.

Mark shook his head emphatically, the lenses of his tiny glasses now covered in tears.

“I not—ng—do it, Momma! I not,” he continued to say as he wrung his fists together in his lap. His fingers were clenched so tightly that I could see little drops of blood splattered on his pants. He’d dug his nails into his palms again.

“I know you didn’t mean to do it,” I said quietly as I sat down next to him on the bed. I took off his glasses, wiped them clean and then went to work at untangling his fingers. “Want to know something?”

Mark looked up and nodded.

“Guess who also ripped some of those pages?” I said with a grin. I waited patiently as the answer slowly dawned on Mark that I, too, had caused the same grievous accident. There were a few pages in the books of Nehemiah and 1 Corinthians that will never be the same again as well.

Learning and growing is never easy. And neither is choosing to live in a space where science and spirituality cohabitate. Obvious differences make abiding in this area of commonality murky and unsettling. It can lead to a wormhole of even more complicated questions. It challenges long-held beliefs. Confusion can clatter inside the head and lingering doubts clutter up the heart. Yet these differences needn’t be complete “deal breakers,” either. Intentionally choosing to inhabit this space where one influences and informs the other is both the puzzle and the prize. Despite our inability to fully comprehend how, there can be harmony. It’s us who’ve muddled up the relationship, opting for ease rather than the complete picture—a picture that may just be too difficult for our preconditioned perspectives to fully understand.

My son’s IQ continues to slowly decrease. His struggles to process and recall information continue to increase. His once debilitating but infrequent headaches are now the norm, along with widespread but unexplained joint pain. And as Mark’s momma, I have the privilege and the challenge of walking with him through it all. Despite science’s best efforts, a specific diagnosis continues to evade us. Yet it’s absence doesn’t diminish Mark’s symptoms and suffering in any way. How senseless it would be to conclude that there is no true cause simply because it hasn’t been fully figured out yet. Mark feels the pain. I hear his frustration. I see his struggles.

To practice both science and spirituality fully, we must come to the same conclusion: We don’t know. We need to navigate with humility. It’s uncomfortable, but necessary to making progress in either camp. It’s the person who readily admits that he or she doesn’t have all the answers that steps into the realm of science. It’s the same kind of person—who knows that all the answers can’t be found solely within themselves—who also seeks God. And I believe it’s this same kind of openness with which we should wrap the dialogue and uncertainties that arise when we allow the empirical and the Divine to collide.

Discord is stressful. And that’s exactly how inhabiting this middle ground might initially feel. No one likes conflict. For our own mental clarity, it’s tempting to push one out entirely. It’s the easy and therefore compelling thing to do. We’d much rather dwell safely in a space of knowing for sure, barricading ourselves behind towers constructed of the concrete that science provides or surrounding ourselves with the moral superiority that spirituality affords. Yet a willingness to allow this discourse to happen can be the very thing that strengthens and spurs us forward. Purposing to exist and explore in both spaces—without the exclusion of the other—can provide the diversity needed to make real progress in both areas.

Despite all of Mark’s challenges and shortcomings, when he’s at ease he’s fearless. At home, he plays with his toys unshackled by the confines of preset rules. He colors how he wants to, refusing to be boxed in by the dark lines before him. He’s eager to learn, asking constant questions about everything around him. Yet he requires a great deal of time to process his thoughts and any new information he receives. And as a family, we make accommodations to better meet these needs.

As I’ve given myself more time to process the experience of being Mark’s mom, I’ve come to realize that the same is true for all of us, too. Difficult things take time to mull over, to make sense of. It’s unfair to expect religion and science to hold hands and “play nice” right away—let alone in the ways we want them to. But like most things worth chasing, this process is worth the time and effort. It doesn’t just happen. But it can flourish in the right environment. Like Mark safely tucked away at home where he can explore without judgment, experiment without fear and process without pressure, science and religion can do the same. And choosing to learn from a little boy can lead us all to a very special space where this is possible.

The Sum of Science & Spirit – Part 2

Please click here to read Part 1.

The drive home was a tough one. We knew beforehand that consenting to the test may have devastating results. But we also knew that it might hold the key to helping us help Mark. Knowing more about what we were dealing with would help us seek out and provide the very best care and intervention for Mark both now and in the future. This benefit seemed to outweigh the inherit emotional risks in profound ways. But nothing—nothing—could’ve prepared us for the results we actually received.

Jason intentionally played music over the car speakers that Mark would enjoy, hoping that it would provide ample distraction for him and enough auditory privacy for us. We rehashed the conversation we’d just had with the doctor in hushed tones.

“But wait… Did I really understand what the doctor said?”

“So—again—they know something’s wrong… They just don’t know exactly what?!”

“The doctor said the test results were ‘profound.’ But what does that actually mean?”

My attention flip-flopped between Jason and Mark. Too many doctor visits, hospital stays and medical testing procedures to count had made me quite adept at switching mental gears quickly and easily.

“You hungry?” I said I as flipped down my visor to make eye contact with Mark in the mirror. “Want to go get some lunch?”

“I go school today?” he answered with a worried look. Mark loved school. Sadly, though, his abilities didn’t quite match his passion for learning. His low IQ and ongoing challenges with memory loss betrayed all his best efforts.

“No, Honey. We’re still a long way from school. Remember how far we drove to get up here?”

“Oh yeah,” Mark said as his eyes dropped to my scarf. It was now scrunched up in a ball sitting in his lap. “Yeah, I hungry…”

“So, what do we do now?” I asked Jason as I flipped up the visor and turned up the music. “Are we just supposed to muddle through on our own while we wait for the next shoe to drop?”

“Yep,” Jason answered bluntly. “That’s exactly what we do.”

Granted, we had no medical history to draw from. Mark was adopted internationally. So, we had no familial background to comb through for clues. But fortunately, science had stepped in to fill in some of these gaps. With the advent of genetic testing and the growing knowledge about the human genome, all it took was a simple swab of Mark’s inner cheek to learn a great deal more about what exactly made Mark’s little body work—and what wasn’t working.

The biochemical geneticist hadn’t given us the clear answers we’d hoped for. He’d only given us new questions and even more reasons to worry. But his persistence had given us something. Where the pediatrician had previously given up, this doctor was willing to trudge through the murky unknown with us. Science couldn’t answer the question of exactly what was wrong—at least not yet. But it could answer the question of why. And this has helped.

Suddenly, we had another piece of the puzzle. It didn’t complete the whole picture. But it helped to fill in one of the gaping holes. It told part of the story we were trying to piece together. And, frankly, this is something that religion and science have strikingly in common. Both seek to find answers, piecing together bits of information to help us make sense of the world around us and our journey through it.

Somewhere along the line, we’ve been conditioned to believe that science and spirituality must be mutually exclusive. We must choose one or the other, either or. We can’t have both. But this has bamboozled us into accepting only a portion of the full perspective. If we’re amenable to living with—and continuing to ask—questions that may linger far longer than we want, if we’re capable of abiding where things aren’t always crystal clear, then we remain fully open to all the answers, including those we least expect—even those we can’t entirely wrap our limited human brains around. Only then are we completely open to perceiving all the possibilities.

When science revealed the truth behind Mark’s genetic issues, I didn’t want to believe it. It was ugly. It reeked of stigma. To accept it, forced me to acknowledge a bleak future filled with pain and likely riddled with struggles. But it also begged a very important question: Did I want what was easy to accept or did I want the truth?

The dialogue between science and religion is much the same. It’s not easy. Our initial reaction may be to pit one against the other. It’s difficult to blend what may only seem at odds. Often our instincts direct us to seek one set of answers from religion and an entirely different kind from science. And this works well for many. But I believe an even greater possibility exists for those who are willing to rest peacefully in the middle, where the lines of absolutes haven’t already boxed us in. When we allow science and the spiritual to overlap and intersect, the paradoxical nature of each may prove to be their greatest strength. The truth might very well prove be that the sum of science and spirit is far greater than either part on its own.

It’s from deep within this beautiful yet unbalanced union that I continue to care for Mark. I make decisions informed by science, yet tempered by compassion. I turn to doctors for help, but remain anchored by the truth that some answers are still (and may forever be) simply beyond our grasp. I use the concrete facts about Mark’s genetic disorders to temper my own emotional reactions, too. It’s difficult to have the same conversation over and over again. It’s tiring to have to think for another person 24/7. And my mind grows weary of having to constantly keep track of how much protein Mark consumes at each meal, careful to not exceed his maximum daily allowance of 15 grams. Yet the answers science has given me enables me to respond rather than react, to feel rather than just emote. Knowing why Mark struggles the way he does softens my impulsive—but very human—first reaction.

Please click here to read Part 3.

The Sum of Science & Spirit – Part 1

It’s foretold in the book of Isaiah, “and a little child shall lead them”. But little did I know that I’d personally be led by a little boy, too.

Faith has always been an important part of my life. I was born, brought up and baptized a Christian. But just as fire makes it possible to bend, mold and shape metal, so do trials, challenges and experiences shape personal faith. They can strengthen or weaken it, build it up or break it. And my own spirituality hasn’t been immune to this process.

“It’s just too complicated,” he said as his eyes bounced between me, the floor and the tiny little boy currently balanced on my knee. “I—I—just can’t help anymore. I don’t know what’s wrong.”

I was stunned. I had no words. The doctor hadn’t said anything that I hadn’t thought before myself. It was the way he said it. And then came the words that had never crossed my mind. The words that I as a mother could never utter.

“I give up,” he said, throwing his hands up in the air. But this time his eyes never met mine. Instead, he grabbed my son’s chart, got up and walked out of the exam room. That was the last time I saw my son’s pediatrician. No referrals. No new leads as to what questions to ask next. Instead, complete and total medical abandonment. For whatever reason, this specific doctor wasn’t willing—or able—to walk inside the hazy space where simple, concrete answers can prove elusive. It’s not easy. It’s an unsteady place. It’s lonely where others haven’t been before. He wanted out.

Perhaps not surprisingly, this medical journey with our son has weeded out our company quite a bit. Our tribe is a unique one. Our community, close-knit. From the primary care doctor who continues to list unspecific, ambiguous reasons for Mark’s acute symptoms in his chart, yet continues to help us manage the latter as best she can. To the pediatric neurologist who uncomfortably confesses his uncertainty at each visit, but still encourages us with the little guidance he’s able to give. To the medical geneticists and the genetic counselor who have continued to answer our questions as best they can despite the slew of unknowns. For every person who’s hit a brick wall and given up, there’s been another who’s come along side us to help.

“What 3 things do you hope to accomplish at today’s appointment?” Jason read aloud off the white board. We’d been pinned up waiting in a tiny exam room for quite some time, and we were quickly running out of ways to keep ourselves entertained.

“Number one… Coupons for the gift shop!” Jason jokingly scribbled down on the board. Mark, wrapped up in my colorful scarf, stopped mid-spin to see what daddy was busy writing.

“Number two… Free prescriptions!” Jason continued writing. “And let’s see… What else?”

“Ah, I’ve got it!” he said as Mark came running over to watch Jason complete the list. “A pony!”

“Yeah, yeah, I want pony, Daddy! Pony!” Mark exclaimed as he jumped up and down, sending my scarf floating down to the dusty linoleum floor.

It was then that the door slowly opened and we each got a peek at the white lab coat on the other side. Mark grabbed my scarf and ran to the safety of my lap as Jason quickly erased the numbered list of humorous wishes. Ironically, the one thing Jason and I wanted most—answers—didn’t make the list. Maybe we knew better. Maybe we were tired of getting our hopes up. Maybe a bit of both.

This wasn’t our first time here. Located inside the largest children’s hospital in our state, we’d made the long drive to see this doctor before. So, it came as no surprise when he began with a simple follow-up exam. This seemed to put Mark more at ease. He knew what to expect and he was obviously pleased with all the immediate positive feedback he was receiving.

“Wow! You’ve grown since I’ve seen you last,” the doctor said as he looked Mark up and down and then glanced down at the chart. “Are you liking school?”

Mark nodded, eager to affirm just how much he loved school. Jason and I appreciated the doctor’s wonderful bedside manner with our little boy. But we were also incredibly eager to get to the real reason behind that day’s visit. What exactly were the findings of the chromosomal microarray testing? We felt as if we were on the precipice of finally having the answers we had been seeking for years, answers we needed to best help Mark. Would answers finally come? Or would we be left to wonder some more?

The doctor didn’t disappoint. And sensing the big reveal was coming soon, I quickly got Mark busy with the crayons and paper I’d tucked inside my purse. As if on cue, Mark picked up a crayon just as the doctor picked up a dry eraser marker.

The doctor unceremoniously wrote “2% – 3%” on the board. Then, turned to give us a “quick and dirty” primer on genetics.

“Identical by decent—or ‘IBD’ for short –describes a matching portion of DNA that’s inherited from a common ancestor,” the doctor began. “When a child is conceived, he or she receives half of their chromosomal makeup from their mother and half from the father.”

Biology admittedly wasn’t my strong suit in school. (I was partial to the Earth sciences.) But I followed the doctor so far. And a quick glance at Jason as he nodded along showed that he followed so far, too. We waited with bated breath for the good stuff.

“Normally, there’s enough genetic variety that there are no issues,” the doctor explained. “But sometimes there’s not. Sometimes when people are related biologically and procreate, there’s duplications.” And that’s when the doctor turned back to the white board and circled the numbers he’d written before.

“A minute amount of duplication is normal. But when the amount reaches this percentage, it’s time to sit parents down and have a very serious conversation about the potential consequences,” the doctor continued. And that’s when he picked up the marker and wrote another number: 19.1%.

“What does that mean?!” I stammered. My words feigned ignorance, but my tone couldn’t adequately hide my concern.

“Well,” he began carefully. “It could mean a lot. It could mean nothing. What it does mean is that Mark has an incredibly high probability of suffering from a wide variety of autosomal recessive conditions, conditions that require that 2 abnormal genes be present. He could be affected now. He could be affected in the future. He could be incredibly lucky and never be affected at all. We just don’t know…”

The doctor continued to rattle on about things such as “long continuous strands of homozygosity” and “high degrees of consanguinity,” two things that Mark also had. But, frankly, I kind of shut off. Suddenly, I didn’t care about the science part of things. Instead, my attention turned to a simultaneously pragmatic and compassionate place. I stopped looking at the doctor and focused instead on the little boy who was currently sitting at my feet.

“Momma, what matter be?” Mark said the moment our eyes met. He immediately dropped the crayon he was holding, stood up and reached for my scarf again.

“Nothing, Sweetie. Shhh…” I whispered as I helped him unravel the colorful swath of fabric that had found its way back to my neck. As he carefully wrapped it around his own, I lifted him up on my lap.

Sometime between the doctor’s impromptu genetics lesson and my own question about Mark’s test results, Jason redirected the conversation to the massive spreadsheet that was also sent along by the genetics lab. It contained a staggering list of over 370 different autosomal recessive genetic conditions that science—up to that point—could identify in those same areas where Mark’s genetic makeup showed duplications.

In short, all the doctor could say was maybe Mark would develop these conditions. Maybe not. But there is no doubting the fact that the odds are extraordinarily stacked against him. Additionally, the doctor pointed out, there is a very high likelihood that whatever Mark currently suffers from isn’t even on the books yet. To say that the study of human genetics is complicated is a vast understatement. Scientists have discovered much, but they’re still working to completely unravel all of its intricate mysteries. And so, sat our little boy smackdab in the middle of a medical mystery of his own. But the very fact that he’s here—alive and functioning as well as he is—is a medical marvel, too. And that truth didn’t escape me then nor does it still today.

Click here to read Part 2.