Curiosity

I got to thinking recently about my incessant curiosity as a child.  While I was growing up, our encyclopedia became dog-eared.  I made good grades because I read everything I could get my hands on.  I wanted to become a librarian until I discovered that nobody can live on that salary.  Even though I continually sought facts in books, I seldom found anything revealing what I really wanted to know.

My thirst for details came from a childhood during which the only matters the family discussed in my presence were this year's cotton crop, those uppity niggras, and the Communist threat of the Cold War.  Heads between your knees - everybody!  And heaven forbid I ask any questions about my parents. [see Queen for a Day]  My brother & I had different fathers, and I was unaware of this until my Auntie Mabel cleverly let it slip into conversation while I was in the room.  When I was fourteen years old, fer God's sake.

I was raised by my Grandmother, Ava.  I called her “Mom”.  Auntie Mabel was Mom’s sister.  Being pretty clueless about picking up on vibes back then, I didn’t sense the tension in the air when Mabel suddenly remembered she had something to do, and backed out of our driveway in a cloud of dust.  Mom was still holding her hand over her heart as she sat down with me to do some explaining.

I had known since early childhood that my parents died when I was two. I was only told that my dad was killed in a butane explosion and my mother died soon after from breast cancer.  The end.  No more questions please.  It was like a memorized litany, which I repeated to others when asked.

The following details I unearthed for myself decades later.  I did some creative Googling, found some newspaper articles and, amazingly, Johnny and Kathryn’s death certificates.

Kathryn was diagnosed with breast cancer and had surgery when I was barely one year old.  The following summer, in May, Johnny was cleaning his warehouse floor with butane-powered equipment.  It somehow ignited, causing an explosion.  He died the next day from his burns.

The following July, Kathryn lost her life to the cancer.  This was 12 days after my second birthday, and 9 days after my brother turned 12.

I was too young then to recall anything about these folks later on.  Not the sound of their voices or the look in their eyes - nothing.  I do not see anybody that looks familiar when I view their photos.  

But I do recall another event with cinematic clarity.  Mom (Ava) takes me inside a portrait studio to be photographed.  The photographer uses a Mickey Mouse in an airplane to coax giggles from me.  I’m wearing a little yellow sun-dress with ruffles, and I complain about the fact that it has a serious side-boob problem.  Mom is annoyed that I waited until we were driving there before I voiced my discontent, and it was too late to go back home.

Mickey totally cracked me up with his airplane, and my wardrobe malfunction worries vanished.  Much later on, probably in my teen years, I mentioned this memory to Mabel and Mom.  Their jaws dropped in shock.  My experience in the studio took place only days after Kathryn’s funeral.  Huh.

My family had been devastated by their loss.  Mom had lost her only daughter.  Kathryn’s brother, my uncle, was heart broken.  I suspect this is why I felt I wasn't allowed to ask many questions.  It made people cry.  Or it pissed them off.   One of my first learned instincts was to keep my curiosity at bay.  Somebody at some point implied that it was naughty to make such inquiries, that it was an invasion of privacy.

I became sneaky, roaming the house at night when Mom was sleeping, looking for “stuff”.  Anything that might tell me more.  I came across a few intriguing items, but was caught before I could examine them.  I was never, ever punished physically, but cried hysterically upon being discovered in the act of disobedience.  I was so terrified of reproach, of the idea that my family would be "mad" at me.  Of that steely look in Mom’s sweet blue eyes.  I've always wished I had a color photo of her.

So I was a good kid.  I mean, an exceptionally good kid.  I didn’t want to make anybody more sad than they already were.

Mom was as kind as anybody could imagine, and her deep love for me was obvious.  My Uncle was gentle and totally compassionate.  It seemed that the most surefire way to bring about their disapproval was to “meddle” in my own past.  So I became more discreet in my futile searches for clues.

We had an exceptionally quiet existence on this three-acre cotton farm.  Mom was widowed before I went to live with her, and with my brother’s long absences (he went into the service when I was only seven) it was usually just us.  Most of my classmates lived in town, so my summer months were seldom spent with friends.  Nobody in the family ever raised their voices.  Yelling was reserved for the Dallas Cowboys.  We didn't do that sort of thing, at least not when I was around.

Rainstorms where the sky would darken and become black in the middle of the day.  Dust storms with silt piling up in the window sills.  We didn’t have Doppler back then, and we were the only farm around with a storm cellar/bomb shelter.  When things started to look tornado-like, families from two other farms would crowd into the cellar with us.  We had fold-out beds and everything, so we’d all just sleep there.  It was very exciting for me.  Oil lamps, candles, deafening thunder.  The foregoing is the highlight of my more dramatic memories of life on the homestead.

I overheard people referring to me as a “strange kid”.  I think my school teachers agreed.

Now does this look like a child who would gaze out the window, missing salient points of classroom instruction?

Mom and I got along quite well.  We were comfortable hanging out together.  She had been an English teacher.  Her mother and grandmother had been English teachers.  Kathryn had also been an English teacher.  We had a huge library of books, including primers.  After I turned five, Mom and I sat in the hallway floor in front of a long bookcase, and I learned to read.  See Tom Run.  We didn’t have kindergarten in our tiny little community, so when I entered first grade, I was the only kid who already knew how to read.  My teachers were aghast when I came to school with a copy of “The Old Man and the Sea”.  I didn’t understand the book very well beyond finding it dark and sad, but I felt that carrying it gave me an air of early maturity.  During reading period for my class, I trotted down the hall for third grade phonics tutoring from the wife of my late father’s best friend.  Phonics, with a little Latin thrown in.  Highly valuable early learning that few kids received back then.  Thank you God.

My great-aunt Mabel came around a lot.  Mabel was single, never married, and quite “worldly” in her life of traveling and socializing.  The tongues that wagged over my parents’ partner-swapping improprieties, (Glen left his Queen and moved in with Alvina...) got an additional workout due to the controversial lifestyle of my rebellious great-aunt.

Mabel's eyes twinkled with mischief.  Never married, had a number of boyfriends, consorted with strong, confident women.  Mabel’s staunchest ally seemed a little too masculine for the sensibilities of the town watchers.  I admired her bravery.

Shockingly, Mabel drank wine openly, even in her old age.

My great-aunt was the first woman to hold public office in her county.  She had friends who were authors and artists living in Santa Fe and Taos.  She was often asked to house-sit for one of them while they traveled to Europe or wherever.  These were Nice homes.  After I reached the age of 13, I sometimes accompanied her, spending a couple of months at a time in opulent surroundings.  At all times, I was admonished to tread carefully.  There was always some comfy bay window where I could curl up to read, or a deep arroyo behind the house to explore.  Mabel had never had kids, had never wanted kids, and possessed little tolerance for their behavior.  This woman might want to yell at me when I acted like a child, but instead she usually got massive tears in her eyes, her lower lip would tremble, and I’d feel oh so guilty.  I spent some time with an artist who lived in the basement of a place we were house-sitting.  He tried to teach art to me, and finally threw his hands up and said I had “no perspective”.  Good to know.

Mabel was the only connection I had to the world outside of West Texas small town mentality.  She introduced me to culture, museums, American Indian history.  Mabel understood my family’s reluctance to talk with me about my parents, and she grudgingly went along with their secrecy.  She finally blew their conspiracy wide open when she casually mentioned that my brother had gone to see...his father.  Hearing this revelation had the effect of seriously unhinging my grasp on reality.  As kids will do, I had long nurtured a fantasy that perhaps my parents were really alive, and for some bizarre reason, I’d been sent to live with old ladies.  I vaguely remember conversations wherein Mabel was telling Mom that it was time they loosened up a little with the information.  Out came the scrapbooks and many boxes of photos and news clippings.  Nobody wanted to look through them with me, so I shut myself in my room and pored over them.  I lovingly put every item in a scrapbook, labeling each one.  I still have them.

Mabel is on the right.  Mom is the one in drag.  Little wonder they didn’t like to discuss the past.

And here we have our duo fondly recalling their glory days.

I will be forever grateful for Mom’s stabilizing influence on my perceptions.  My uncle and his wife were devout members of a popular Bible Belt church.  No dancing, no musical instruments in worship services, no drinking, no tolerance toward the ideas of others.  Their doctrine was firmly rooted in the belief that anyone worshiping differently than them would go straight to Hell.  During one service, the pastor talked about divorce.  He claimed it was an unpardonable sin to divorce and remarry, unless one or the other of the partners committed adultery.  Otherwise, there was no possible forgiveness to be had, and the sinner was hell-bound.  No redemption.  I wasn’t too clear on what adultery meant, but I was pretty sure one or both of my parents was in big trouble.  I don’t recall who I spoke to after the sermon.  I imagine it was one of the elders who was friendly with my uncle.  I went up to this guy with tears in my eyes, asking in a trembling voice if this meant my mommy and daddy were in Hell.  His face went florid and he began stammering.  I got home after church, hysterically telling Mom what I had learned.  Mom was not one to ever set foot in church.  This day, she explained why, and I was comforted.  The God of my understanding does not set such harsh terms.  From there on in, I dutifully attended church.  It was safer to placate the wife of my Legal Guardian, lest she think me to be a Godless pagan.  As long as my immortal soul was safe, my aunt was less likely to urge my uncle to interfere in the relaxed and mutually trusting relationship I had with Mom.

Now I understood why Mom sometimes drove to another town to catch a movie on Sunday mornings.  She and Mabel once picked me up at church after seeing “Lolita” at the Granada Theater in Plainview.  Scandalous information, which she trusted me to keep under my hat.
I didn’t even have a curfew.  Mom could count on me to be home at a reasonable hour, and I always was.  As long as we flew under the radar, all went well.

Delighting my aunt with the transformation, I was baptized at the same age as all my peers.  After the baptism ceremony, I was expected to stand in line with a bunch of kids whose heads were similarly soaked, shaking hands with parishioners as we received congratulations.  I drew the line at that bit of theater.  Right after I was yanked to my feet, drenched and sputtering Baptismal water from my nose, I toweled myself off and walked briskly through the evening air to the car.  I was listening to The Four Seasons telling me that Big Girls Don’t Cry, Chubby Checker doing The Limbo Rock, The Shirelles longing for their Soldier Boy, and The Surfaris, uh oh Wipe Out - here they come.  It’s my Aunt and Uncle, and they look grim.  They were mortified by my daring dash out the side door in view of the entire congregation.  What would Deacon Jim Bob think?  I replied that I had a headache and was about to throw up.  This explanation always worked.

Mabel, Mom and I traveled to Carlsbad Caverns, Santa Fe, Taos.  These two elderly ladies and a young girl, enjoying the hell out of ourselves.  We played cards a lot, took long walks, talked and laughed and told jokes.  Ate many slices of Sara Lee All Butter Pound Cake.  It got to where we treated each other pretty much like friends, and we had great fun.  For circumstances to have started out in such a dysfunctional manner, my home setting eventually morphed into a decidedly healthy, if strange, upbringing.  We just all had to get used to each other.  When I came home for my first weekend back from college, Mom got out the blender, produced a bottle of Absolut from under the kitchen cabinet, and made us a pitcher of Tom Collins.  Now there was an item that my childhood snooping had never turned up.

I celebrated my 21st birthday with Mom, Mabel, and my uncle in the house where I grew up.

The following November, Mom passed on at the age of 80.  Less than a year later, I left for Colorado, and a not so stellar career in the music biz [It’s All Right Now].  Mabel and I hooked up now and then, either in Plainview or in Santa Fe.  We exchanged literally hundreds of letters up until a few years before she died at the age of 96.  During all that time, I continued to resist asking questions of her.  My sense of awkwardness with family was still ingrained.  Everyone who remembered the people that I never knew, are gone now.

But I remember Mom and Mabel.  These two kept no secrets from me about who they were, and it satisfied my curiosity about family in general.  When I think of them, I smile.


RAM

Backyard Bees

Every summer, we see all different kinds of bees hovering in the flowerbed.  There’s one we’ve come to know as “Grand Master Bee” because he’s Ginormous.  I mean this is a huge bee, quite fuzzy.  Black, red, and yellow.  Every time we’ve spotted him, I’ve dashed into the house to fetch my camera.  By the time I’d return, he’d have flitted off someplace else.  This year, however, he not only stuck around, but he brought his twin.  Therefore, I cannot tell you which one is Wilbur, nor which is Orville.  They seem to have taken a particular shine to our lavender.

Please do click on these photos to enlarge for detail.

I attached a super long lens because, given his size, I suspected his stinger might be proportionally scary.

I figured this imposing insect must possess some sort of scientific name, so I went to my trusted source.  Dave’s Garden has taught me the sum total of what I know about nature’s critters, flora, fauna, and birdies.  I posted photos of our friend, and found that he has a befitting moniker.  Bombus Ternarius.  Almost sounds prehistoric, doesn’t it?  He’s also known as the Tricolored Bumble Bee.

Yep, I definitely see three colors there. I was also informed that these fellows don’t sting unless they’re seriously provoked.

Freakin’ beautiful, isn’t he?  Now that I know they’re semi-friendly, I won’t be afraid to wade in there and get some better images.

Speaking of Dave’s Garden, a few years back we noticed a little round area of earth taking up about three or four inches of our lawn.  Then we saw tiny metallic green bees flying in and out of a hole in the center of the circle.  Off I went to Dave, armed with photos of our intriguing new guests.

I found out they’re called ground bees, and was assured that their underground hive would not cause our lawn to collapse.

The entrance in the photo above is atop a mound.  Whereas, the portal in the image below is on flat earth.  Interestingly, it seems that the only time they mound the passage is before it rains.  How in the hell do they know, when the 9 News meteorologist isn't aware enough to take an umbrella to work?

I haven’t a clue where bees go in the winter, but the ground bees didn’t return to us until this summer.  I’ve spent hours observing them and getting as many super-close up shots as they’ll allow.  I sit cross-legged in the lawn, and scoot up a little closer to their doorway over a period of time.  After awhile, they get pretty used to me and put on a show.  Other times, I might approach the fortress while they’re at lunch, and get a sunburn waiting for activity.

Actually, what I've been hoping for is the Pulitzer winning moment when they fly in formation, spelling out some profound truth regarding the Higgs Boson particle.

In the meantime, I'll have to settle for my own amateur efforts.

However, I did get them on film.  (Hmm - film?  Not really.  No such thing anymore.  I guess that’s a phrase destined for extinction.)

 

 

RAM

Caregiving Defined

Today’s my birthday.  Not something I normally announce.  This time, however, I am compelled to acknowledge the profound Grace that allows me to be here for it.  Most notably, my spouse and diligent caregiver, Wingman. I mean, check out that calm smile as we wait in my room before the surgery.  He was freakin' petrified.

We were married in 1995 and our joy in being together is pretty noticeable.  Friends often comment on how good we are together.  Wingman tells them, “you’ve gotta be friends first”.  Our friendship was the foundation on which we began, and the connection that’s held us together ever since.  We were buddies who loved each other for a long time before romance crept in.  The love has continued and gained strength over time.

We’ve had our disagreements, some of them serious, but we've been blessed with the courage to resolve conflicts as they’ve arisen.  We came to think of ourselves as seasoned partners.  Our experiences with hardships had equipped us to deal with whatever might threaten our union.

In October of 2000, I was diagnosed with Primary Biliary Cirrhosis (PBC).  It’s an autoimmune disease that attacks the bile ducts of the liver, in many cases causing the organ to eventually fail completely.  I was given a medication that slows the progress of disease, and we went on with life, not dwelling overly much on the prognosis.  For ten years, I enjoyed good health.  In fact, I, personally felt sure I was one of those people who would never exhibit symptoms beyond the mild fatigue I was already experiencing.

In February of 2010, shortly before my health began to take a dive, we traveled to Culebra, a tiny island just east of Puerto Rico.  We already had friends there, and we made more during our visit.  One of my island friends became my blogging mentor.  It was a well-timed gift to have this spirit-strengthening experience while my stamina still allowed me to participate.  Wingman, however, paid attention to subtle changes in my condition better than I did, and he would sometimes remind me, “hey stargazer, slow down. you’ve got a liver disease”.  He was my caregiver before either of us knew the full meaning of the word.

During the Summer and Fall of that same year, the fatigue hit me hard, and new symptoms cropped up which finally wore me down.  I applied for disability and quit working that November.  Several years prior, Wingman had been compelled to leave his job in order to care for his diabetic father, and then later when his mother began a slide into dementia. This is important to note in light of the fact that he was soon to become my caregiver as well.

Only one month after I left my job, I was hospitalized with a low red cell count and was given massive transfusions.  Wingman was right in there, asking questions of the doctors and everyone else involved in my care.

Over the next three months, we went through three emergency episodes of internal bleeding, multiple transfusions, and stays in the ICU.  My doctor called it cascading symptoms.  I called it an avalanche.

We became intimately familiar with University of Colorado Hospital.  Living only seven blocks from the campus was a blessing.  Wingman says they built it for us.

During most of this little nightmare, I was not in any shape to be proactive.  But Wingman was.  There were several instances wherein he had to stand his ground, and he did it effectively.

ER docs are continually faced with life-threatening situations, and Wingman had observed their tendency to work fast without knowledge of patient history.  Their priority is to save a life no matter what, so ill-advised procedures are sometimes performed.  I can dig it.

But my partner had learned to watch for hasty medical decisions, and he protected me like a pit bull.  I reminded him several times that he would be of no use to me if he got dragged out of the ER by Security.

The third time I had a bleed, it was an excursion into new territory.  An impressive amount of blood was coming up from my stomach or esophagus or wherever the fuck.  Two doctors who were not familiar with my case were about to perform some procedure, and they were becoming more ardent in their insistence after Wingman told them “no way”.  Not without the blessing of one of my doctors.

My spouse has the ability to convey an unsettling intensity (i.e. challenge) with his eyes.  Ultimately, a hepatologist was called in.

Later, while I was being intubated, Wingman had been banished from the room.  He sat cross-legged on the floor directly across from the doorway, listening, observing, making comments (to which he actually received replies).  Later, there was a period of time during which the doctors hoped to stabilize me by keeping me sedated.  I was left to sleep the sleep of semi-awareness that I couldn’t breath, but that somehow I was.  And Wingman was left to whisper encouragement in my ear.  Not so much sweet sentiments, but straight talk.  And though I don’t recall him speaking to me, he reminded me of a mantra to repeat within. I dove into the comfort of the mantra, wondering vaguely if the instruction had come from God.

Doctors would arrive in the room and find Wingman asleep on the couch, but already sitting up and becoming attentive.  One doc greeted him with, “My God, you’re still here?”  He eventually earned a reputation among the staff for his stubbornness, intuition, and likable nature.  For a guy who “doesn’t like doctors”, he hit it off surprisingly well with most of them.

When the tube was finally removed from my throat, allowing me to breath on my own, my eyes began to focus.  The first thing I saw was Wingman.  His face had assumed a chiseled look, as if he’d been holding his breath until that moment.  Tears brimming.  His features held a raw, unguarded mixture of despair and relief.  Never have I seen love clothed in such a way.

As one can imagine, the party wasn’t over.  There were no more sudden crises demanding an ER visit, but the trauma of the last incident kept us on edge.  Like waiting for the other shoe to drop.

After being placed on the transplant list, I underwent several procedures to ward off further assaults on my system, keeping me alive.  Wingman kept himself informed through all these events, during which he and my care team established a friendly, semi-grudging, mutual respect.

A little under a month before I received the transplant, Wingman’s mother passed away.  Even in his grief, he displayed a calmness, comforting his dad and the family.  Acting with purpose and taking things one step at a time.

Returning home after the transplant, I was basically helpless.  Wingman would squat by the bed, I’d wrap my arms around his neck, and he’d stand up, pulling me to my feet.  Everywhere we drove, he would get out the walker and help me get to wherever we were going.  It was a multi-tasking effort for him, because he had to watch me every second.  He was also in charge of my meds, which were always changing.

I was a difficult patient.  Somewhat incoherent, argumentative, and given to delusions.  I was downright hostile at times, accusing him of plotting against me and withholding my pain meds.  I tried his patience to the limit, and we had several unpleasant scenes.  There were times when we thought it had finally broken us.

As I regained some clarity, I was still so self-focused, that I didn’t often tell Wingman how much his caregiving meant to me.  And when I would try to, I’d babble.  I didn’t know how to convey what was in my heart, and I still haven't expressed it to my own satisfaction.  He made countless sacrifices, canceling his own plans and generally giving up any desires he had for himself.  Always sleeping fitfully in case I needed him, feeding me, helping me to the bathroom, buttoning my pants, bathing me.

His devotion was beyond my comprehension.  It is humbling to be the object of such a mighty love.  However, I've slowly begun to understand that I might be worthy of it.  And if that’s the case, I might have the power to return it.

Today is my birthday.  Thanks Dude, for your tireless love.

Words fail me.

RAM

Waiting

Waiting.  I’ve done it for over a year and a half.  The waiting now is more of a psychological thing as my body slowly becomes stronger.  That's a more ongoing story.

In the year 2000, I was diagnosed with Primary Biliary Cirrhosis (PBC), an autoimmune disease which slowly destroys the liver's bile ducts.  It is believed to be hereditary.

In late 2010, the fatigue and cognitive symptoms of liver disease started interfering with my ability to effectively do the job I’d enjoyed for twelve years.  Not really "enjoyed".  But it was a good job, and I was good at it.  When it became evident to me that my accuracy had taken a dive, I applied for disability and left work on November 12, 2010.

For now, I won’t go into the ensuing health scares that arose shortly after that.  This is about waiting for the unknown.

One detail that’s important to the waiting game is what liver failure does to the anatomy.  When one has ESLD (end stage liver disease), the liver stops performing various functions.  The toxins produced by the digestive process are supposed to be cleansed by the liver.  When it's no longer able to do so, ammonia builds up in the cerebral cortex of the brain causing hepatic encephalopathy, otherwise known as "HE".  This begins early in the disease, and doesn't become noticeable until everything else has begun to fall apart.  It causes confusion, an altered level of consciousness, irritability, difficulties with coordination.

Wingman and I (and friends) had innumerable concerns about my behavior.  Learning about HE cleared up damn near everything.  It had taken away my ability to "pay attention".  The most common symptom of HE is a reversal of sleep rhythm.  I'd been trending toward a nocturnal pattern about the time I left my job, staying up and prowling the house at all hours.  I still have cognitive issues to a disturbing degree, but am told it will improve along with the rest of the recovery process.

There were some days of waiting which were joyously eventful, in that I felt strong enough to play in the flower beds.

I did some planting, but don’t recall what I planted nor where.  This growing season has yielded some of those results, such as Shasta daisies growing in a nice row against the front wall of the house.  Their appearance brought on vague memories of that lost summer.

I got down to 91 pounds and developed a skeletal appearance, which was alarming to Wingman.  Such an amazing caregiver he has been.  Kudos to him are forthcoming.

I sat outside much of the summer, taking many photos.  Woodpeckers visited and posed amiably.

Bees flew in slow motion for my camera.

Nature's beasts were cooperative with my need to record everything around me.

And I waited. The despair was getting to me, so I decided to do something humorous yet indicative of my state of mind.  I produced this self-portrait on Sept. 8, 2012.

The next day, on Sept. 9, I got THE call.  We had just gotten in the truck after a blood draw, and were headed out of the parking lot of the hospital for a dentist appointment.  My phone rang, and it was TS, the transplant coordinator.  She was all cool, and she was like, "Hi, what's up?".  And I go "Oh, not much.  Just on my way to the dentist, but my schedule is flexible."

I knew there could only be ONE reason for her to be calling me.  I was keenly aware that my last blood labs had produced a score that put me at the top of the transplant list.  TS suggested I go get a good breakfast, pack a bag, and come back at noon when they would have a bed waiting for me.  Organs were being harvested (nice word, don't you think), and if the liver was a good fit, my transplant was to take place in the morning.

So I waited - in my hospital room.

They came to get me at 3:00 am, and the wait was over.  The date was 9-10-11.

RAM