Facing the Spectrum

     It may have started with my neighbors, or maybe it was the arrival of my friends, or maybe just my walking with the dog.  Or maybe it was the heat.  Even my 85-year old friend, who's stubborn as a mule (clings to her landline no matter how poor the service), succumbed to having air conditioning installed in her home (she is now quite happy, as she often reminds me through a static-filled call).  But where was I? (as she would often ask during our conversations)  Oh yes, the heat.  Our second week of 100+ degree temps is breaking records, even if we do sit in the bowl of a desert.  While southern cities such as Las Vegas and St. George zoom past the 110- or 115-degree mark, we here in Salt Lake City are used to the 90s in summer.   But the 100s?  Phew, those Southern naps and iced teas are looking mighty inviting.  And so it was that we had our neighbors over, neighbors whom we've known for nearly forever and with whom we still enjoy monthly gatherings.  But that said, who knew that they read so much?  Mention a book or ten and they've already read it: all the best sellers, most of the mysteries, even a batch of historical fiction.  But they kept bringing up this book by Kurt Eichenwald.  It's about epilepsy, they told us.  A memoir.  You need to read it.  Then our friends from decades ago arrived (he and I went to high school together).  And with them came their newly adopted 7-year old, who is autistic. 

      Let me back up a bit here, because it was while walking the dog that my knee did that nerve thing, that unknown zing that comes out of nowhere and grabs your attention: that electrical shock, that bite of a piece of hard shell while eating nuts, that cavity you never knew was there.  Suddenly my leg faltered for a split second and I thought, "what was that?"  A quick shake, a slow move, and the rest of the walk went without incident.  Then the next morning it happened again.  What the heck?  Anyway, such things, even when spaced apart by hours or days, give you a bit of a pause.  You chew more slowly for a bit, or you grab the next wire a bit more gingerly.  And now my confident walk (the "I'm healed from my injury" walk) was being shaken.  What was happening?  A friend of mine had just returned with a similar story.  His friend from long ago told him of not feeling well one day, a bit nauseous and dizzy to be honest, then it all went away.  A few days later,  he awoke and the feelings had returned, although it again dissipated after a few hours.  He made a doctor's appointment and after a battery of tests and scans, it was found that something vague had happened.  A stroke?  A virus?  A short circuit?  Nothing really definite but they all took note that his short-term memory was quickly disappearing.  Remembering the day, or the time, or even caring for himself was now gone.  He was telling all of this to my friend  as if it were yesterday, except that he couldn't remember yesterday.  Ten or twenty years ago... perfectly clear.  But last night's movie?  Gone.  He now resides at a care facility.  What the heck?

     So epilepsy.  I know zip about it, other than what I'd been told from long ago.  Grand mal.  Uncontrolled spasms.  Call for help, and watch the tongue.  Turns out, much of that was wrong.  Here's what Kurt Eichdwald, author of the book A Mind Unraveled, heard from his counselor as Eichenwald himself struggled to understand his condition: "Everything you're describing is what happens in a postictal state of a grand Mal seizure.  That's the name for the period of time after a seizure when you can be awake, but the brain still hasn't recovered.  As the counselor continued, wrote Eichenwald, he: ...dispelled myths about convulsions.  Tongue swallowing was an old wives' tale; if someone was lying faceup after a seizure, the tongue might flop backward, but elevating the head on a pillow or turning it to the side solved that problem.  Putting spoons, pencils, or any hard object in the mouth was unnecessary and dangerous.  That mistaken remedy for the tongue-swallowing myth likely resulted from seeing the well-trained place a wallet or soft bite stick between the teeth.  People's jaws often clamp tight during a convulsion, and soft items could protect the tongue, lips, and cheeks from bad bites.  If the mouth was already shut, it was too late to stop a bite, and prying open the jaw could fracture a bone.  When the untrained used a spoon or another hard object, teeth could break...no one should hold down a person experiencing a seizure; that could cause injury or intensify the convulsions.  A seizure typically lasted a minute or two.  If it continued more than four minutes, someone needed to summon help.  Otherwise, there was no reason for an ambulance after a seizure. 

     Was that different from how I viewed the world of epileptic seizures?  Absolutely.  Then my friends arrived with their new addition, a 7-year old girl with autism.  Cute as a button, she was an absolute delight, at least on first meeting her, and she was insatiably curious, and literally into everything: water in the dog dish, the flap of a zipper, old magazines to flip through, each of which would fascinate her for minutes upon minutes; then she'd stop and rock her head back and forth in an exaggerated "no" pattern.  "It's called stemming," they told me.  "She's 'reseting herself."  Was she looking at any particular thing as she did this, I asked.  No.  Then I bent down and tried to have her look me in the eye as her gaze shifted over to something else as quickly as it tired of whatever she had earlier found fascinating.  No luck.  Her attention was hers alone and she was without inhibition or filters (this is yet another common symptom of autism).  My friends looked exhausted, and they were.  At their ages (73 & 70), this was a lot to take on (they had basically 'rescued" this girl from going to foster care, the courts granting them guardianship because of an awkward family situation regarding the young girl's mother).  Their love and dedication humbled both my wife and I as they continued their research into how best to help her, having already found specialists for both her physical and mental health.  For us, it was a deep dive into a world we knew nothing about, at least firsthand.  And it was obviously one which did and would alter the course of their lives...and hers.  Would this young lady get "better," I asked?  We hope so, they told me, but they really didn't know.  One day at a time, they said.  Their selfless actions made me recount the words of Gillian Anderson & Jennifer Nadel in their book, We: Each of us had our own part to play.  Nothing is asked of us that we don't already have to give.  We all bring different qualities and different gifts.  We are all needed.  The internet gives us ways of reaching one another and getting organized that have never existed before.  Every one of us has our own calling, dictated by our heart.  Some of us will lead, some of us will support.  Some of us will march, some of us will make tea, some of us will sew banners, some of us will write research papers.  Others of us will sit with someone who is lonely and feels broken, as we have each felt in our own way.  But what we won't do is be indifferent to suffering.  We won't tolerate discrimination and unfairness, and we will no longer believe that our voices and our actions won't change anything, because together they can, they will, and they already are.  

     But there was another part of the mind and body so common and yet so unknown to most of us: an implanted defibrillator.  You know those movies or life-saving courses that show a defibrillator charging, the paddles or patches placed on the bare chest, the medics or trained volunteers saying "stand back," then the machine robotically saying "apply shock."  Now imagine that defibrillator as an implant, a life-saving one but one which could go horribly out of whack.  Here's how Katherine E. Standefer described it in her book, Lightning Flowers: Nothing can prepare you for what it feels like to be shocked by an implanted cardiovascular defibrillator...A maul cracked open my chest with a sickening thump, a hot whip tearing through my back.  Did someone kick in my spine?  And then i knew.  And I was screaming.  "There's no way you wouldn't scream if you felt it," my sister had said.  By then, the defibrillator had been in my body for three silent years, resting loyally above my left breast, keeping watch for the arrhythmia that could send me to the ground unconscious, with a heart quivering rather than pumping blood.  Now, on a crisp November night in Tucson, Arizona, i dropped to my knees in time for the second shock.  What if it doesn't stop?  I knew something was wrong, either with my device or with my body, but probably my ICD...A third shock.  You can either scream or breathe, a voice inside me said, and I began to pull in air, cold heavy breaths, the way I'd learned to breath into pain in yoga.  I am either alive or dead, and I can choose which...The thin, branched burns that uncoil from the heads and necks of lightning-strike victims are sometimes called lightning flowers.  Fernlike, following the patterns of rain or sweat, they are rose-colored lightning bolts frozen onto the body, as beautiful as they are terrible.  I will never know what my insides looked like after two thousand volts -- if my tissue eruoted into lightning flowers of the body cavity, a sudden bloom.  What I do know is that the night I took three shocks to the heart I was marked, called into the world in a way I could not turn away from.  What can save us, I would learn, never comes without costs.

     Whether mechanical or neurological, there are a lot of things happening inside our bodies which we cannot see or understand.  Why does autism strike 1 in 36 children under the age of 8?  Is it genetic, as implied in a report from the National Institute of Mental Health?  Or is it related to alcohol or drug use during pregnancy?  Or is it just another random roll of the cosmos' dice?  Wrote the Mayo Clinic: Autism spectrum disorder includes conditions that were previously considered separate — autism, Asperger's syndrome, childhood disintegrative disorder and an unspecified form of pervasive developmental disorder.  Some people still use the term "Asperger's syndrome," which is generally thought to be at the mild end of autism spectrum disorder.  And if Asperger's is considered the "mild" end of autism, how do we explain Parkinson's, or Down's & Fragile X syndromes, or ADHD, or dyslexia & dementia...or even an aneurysm? 

     Just as with that defibrillator, peering into the reasons of why something happens is beyond what our instruments and often beyond what our eyes can see.  And there is a LOT that our eyes can't see.  Again, theoretical physicist Matt Strassler:..the visible light coming from the sky is a rich blend of waves with all the frequencies found in the rainbow.  The waves from the bluish band of the rainbow have somewhat larger amplitude than do those in the greenish and yellowish bands, which in turn exceed those at orange and red frequencies.  But as your eyes absorb and process the sky's light, they pare away its complex details, reducing them to a very small amount of information.  Only the diminished information is sent to your brain, which then processes it further and creates an experience of the sky blue in your consciousness.  In short, not only can't our eyes perceive most frequencies of light, they're not even able to capture most of the details of visible light!  Our eyes are as much censors, with a c, as they are sensors, with an s.  They're unresponsive to everything except the visible frequencies, and even the information about visible frequencies is drastically edited before it is sent to our brains for interpretation.  Then our brains are like a government information agency in a totalitarian state: they take the already censored information and transform it into the world they think we ought to know.  The world we think we see isn't the world as it is.  At best, there's a resemblance.  Perhaps that is true not only from our own "normal" worlds, but also from those with neurological disorders.  As Lisa Ryan, accessibility coordinator for the Nature Conservancy wrote: It's easy to think a person in a wheelchair can't get into a building with stairs, or someone who's deaf can't participate in a tour, when really it's the lack of a ramp or an interpreter that's the issue.

     Admittedly, what causes the brain to develop, or not develop, remains a bit of mystery, even to neuropsychologists. Why does the 21st chromosome not separate in some and lead to Down's syndrome?  And why does the neuropathology of those with Down's syndrome look so similar to those with Alzheimer's (almost all of those individuals who have Down's syndrome will exhibit such traits by the age of 40, wrote psychology professor Sandy Neargarder in her lecture series with The Great Courses).  And research continues with the BRAIN Initiative, as well as the recently-ended Human Brain Project of the EU, one which had "more than 500 scientists and engineers employed at more than 155 research and learning institutions across Europe.  But the causes, answers, and understanding of the workings of our human brain remain elusive...     

      So there I am, sitting with this darling little girl who appears to not give a hoot at what I think, or how I'm looking at her: with a smile, with worry, with whatever.  Then she quickly walks over and holds my face with both of her hands, and stares.  And stares.  And stares.  And once over my awkward feeling of a "what's this about" look to her parents, I simply smiled and stared back.  This was the face of a child, no inhibitions, just pure innocence, and looking deep into me.  It wasn't a face-of-God moment but it was pretty moving, and one I've never had nor will likely have again.  After about 30 full seconds, she said, "hi," let go and moved on to something more exciting, like that water dish.  It was as if what had just happened didn't seem to matter, at least in her mind (and how I viewed it).  Wrote the Mayo Clinic: Autism spectrum disorder is a condition related to brain development that impacts how a person perceives and socializes with others, causing problems in social interaction and communication.  But think of what a different world we would all share if this deep, innocent Avatar-like stare wasn't a "problem" behavior but a normal one.  If only we could see and be seen that deeply...

     What I saw in front of me was another spectrum, that of life itself.  I could see it in that child's eyes, and I could see it in the love that my friends had for that child.  It was selfless, and they both knew, and had planned for, their passing.  But they had found others equally loving and dedicated who would continue helping this child grow.  And from what they'd already seen in the year they've had her, she had indeed passed certain markers in developing.  But it took time, a lot of time, and sacrifice, and love, all of which they were quite willing to give.  I'd seen this struggle for life outdoors as well, the cut tree that sends sprouts from its stump, my own cactus which broke and was now sending out new growth.  Life can and does go on, but sometimes it needs the help and attention of others.  As psychologist Scott Thornton wrote in Kurt Eichenwald's book: For each of us, there can come a moment when we must take stock of our circumstances, acknowledge what we desire, and then take responsibility for attaining those things.  There will be setbacks, and there might be debilitating symptoms for which we may seek help. Grit and perseverance, delayed gratification, and the tools of stress management can be developed, and will be needed.  The shift from survival to thriving entails balancing this fierceness with large doses of humility and extending ourselves to others...Take nothing for granted.  Accept that the process of authentic living never ends, and that at any moment our world can be shaken.  For me, all it took was a child's eyes peering into my being...