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

An Almost Exciting (slightly uninspired) Sunday

Several days of 100+ temps have forced us to live inside.  Smoke from eight wildfires burning across the state creates an eye-watering haze.  The forecast is for more dry, hot weather with high winds.  There's a 20% chance of rain for today.

I've always wondered about that.  Does that mean there's a 20% chance it'll rain in the spot where you happen to be?  Just look at those clouds.  It’s got to have cooled off enough that we can finally go outside and play in the yard.

First, let's check the Owl before going out.  It’s in the shade on our screen porch, so it should register a cooler temp than it is outside in the sun.

Holy crap, can that possibly be right? 

The Owl Never Lies

However, I do hear thunder, and the air smells really good.  So I shall venture forth with my camera and investigate.

Damn if I don’t feel raindrops on my skin.  How can this be?  Think I'll film this.  A photo of wet spots on the sidewalk can't possibly convey the stark drama of the moment.

Turns out we caught the very southern edge of a nasty lightning-filled rain and hail storm.  It’s headed North now, after only spitting on us.

From the looks of it, I do believe we were spared from destructive weather.  What a tease.  But just look at that “G3” cell.  It’s headed to the West of Ft. Collins, which is where the High Park fire has burned 191 homes and now covers over 82,000 acres.

This storm would no doubt be welcomed more by the firefighters than us here in the city.

In the meantime, the sneaky little cell that brushed past us succeeded in cooling the air just enough for me to water the flower beds without danger of collapsing from heat stroke.

I have no call to whine.  I mean, just think.  I'm now strong enough to wrestle with garden hoses, then retire to my laptop and write this rambling account.

I sit here in our sweet little home with swamp coolers belching out chilly nectar.  And I am reminded that, despite myself, I have reason each day to be thankful for another blessing.

Peace.

RAM

Grace

Last summer, less than a month before I received my liver transplant, an event took place that overshadowed my illusion that it’s all about me.

Dad called us around 7:30 pm on August 15, and said, “I don’t think Edie’s breathing.”  Wingman’s mom, Edie, had been slipping into dementia over the previous four or five years.  By the time she passed, she was unable to do anything for herself and no longer recognized family members.  She was in a nightmare world that was frightening and painful.  Though unexpected, we knew her passing was a blessed release.

When Wingman and I got married (eloped), Edie welcomed me with open arms.  She was strong, she was devoted, and she was selfless.  She and I were fully comfortable with each other from the time we met.  Knowing looks, winks, we had it all going.

Edie had amazing eyes - like blue ice.

I spent many hours with the grieving family.  None of them in so much grief as Dad. Through grace, my stamina went into high gear, and I was able to pitch in effectively.  I researched funeral homes and helped with arrangements.

Prior to the funeral, I spent several days putting together a slide show with Polish Catholic hymns and photos of Edie.  Despite the encephalopathy (foggy brain), I intuited my way through a process I’d never done before and produced a sweet little tribute.  Bless you Steve Jobs, wherever you are.  I put the laptop on a table, hooked up speakers, and let the slideshow run at a low volume throughout the viewing.  The family was touched by it, and I knew the guidance I followed was the right thing when I saw those healing tears.

“I” did not do these things.  This temple in which my soul was dwelling ought to have been parked in the shop, awaiting a new part.  It was God’s lila (the enchanted dance of existence, the divine play), that enabled me to be there for my family. I was gifted with everything I needed in order to be of service, acting pretty much on auto-pilot.

I was self-conscious about my appearance.  I’d gotten down to 91 pounds, and had nothing especially appropriate or stylish to wear that didn’t look like a tent on a stick.  So I donned my nicest shirt and the only pants that weren’t likely to drop past my hips and I sallied forth.  I was the most yellow person there.  Like that cheap tanning lotion that turns the skin orange, yet so evenly applied you'd swear it was the real thing.

Wingman’s sister and her husband live in another city and, because of various (and quite valid) issues stemming from her upbringing at the feet of Dad's parenting style, she hadn’t spent as much time with Mom as she would have liked.

In the meantime, trouble had been brewing over Wingman's exasperation at his sister for not being as helpful as he thought she should be.  Wingman always has too much on his plate, and it’s difficult to be of help to him, and that’s all I’ll say.  The last three to four years, every visit has been a growing clusterfuck of blame and misunderstandings, with Wingman ultimately chasing his sister away.  She in tears, vowing never to come back.  Later, there would be phone conversations and vague apologies and a temporary truce would be forged.  After an especially unsettling clash a few months prior to Edie’s death, it didn't appear possible that anything could ever be salvaged.  I love Wingman's sister.  I had been denied her company, and I was pissed.

Providence.  I like that word.  It’s such a befitting term for what happened next.

Edie's deep desire for peace among her kids came about through her passing.  At the funeral, this proud, Polish family who seemed to prefer altercations to expressions of affection, suddenly had no Mama to remind them how important those things are.  And they clung to one another in grief. They shed all awkwardness, embracing and weeping together, opening their hearts with words of contrition, appreciation, and love.

It was the most tangible evidence of God at work that this little farm girl ever beheld. I gained new freedoms as well.  My long-held attitude of hostility toward Dad had prevented any impulse to look past the image I kept  of him.  At the viewing, Dad was pacing and speaking to Edie as she lay in the casket.  He kept saying, "I've never been here before.  I don't know how to do this."

I've never been here before.  Such a direct and perfect assessment of his grief.  This was the first time I’d seen the humanity in him that I’d been overlooking.  And I went, “shit yeah, may as well look for other things about this dude that I can love.”  Once the veil was lifted, I was shown a whole other guy.  What can I say?  He’s my pal.

After the funeral service, as we were all getting into our vehicles to leave the cemetery, an enormous hawk began circling above us.  We were in three vehicles driving back, and this bird stayed with us for several miles.  Each of us shared similar thoughts - Edie's spirit flying free, but always with us.

We are changed for the better.

The One and Only

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

It's All Right Now

Some time back, we treated ourselves to a bed & breakfast night on the edge of downtown.  Our room was on the rooftop, and as I looked down from the deck, I spotted this house.  I remembered it right away as the building where I first worked after moving to Denver in the 70’s.  It was a renovated mansion with offices downstairs for a talent and booking agency called Stone County.  Live music was big in town during that time, and it was most often performed in small venues.  There was Ebbets Field downtown, and Cafe York on Colfax, the Oxford Hotel.  The larger venues were still smaller than most clubs around today.  Rainbow Music Hall, Turn of the Century.

That back door by the bench leads into what was then an enclosed porch.  It was the Publicity department where I assembled press kits, and opened packages of cassette tapes from bands looking for representation.  Later on, I handled contracts between the musician’s union, the venues, and the performers.

It wasn’t uncommon to walk into the front room and see several folks standing around, not all of whom I recognized.  The phone rings, and I ask, “hey, is one of you guys Jimmy Buffett?”.  And he takes the phone from me.  I smile with delight and hand it to him, not having the guile yet to be embarrassed.  We represented names like Steve Martin, Mason Williams, Bryan Bowers, John Hartford, Nitty Gritty Dirt Band, Leon Russell.

One evening, I was asked to drive up into the foothills and deliver a demo album to this guy who was performing at a bar on Hwy 285.  I grumbled about it, couldn’t get anybody to go with me, I had to pay a freakin' cover charge.  His set was just starting, so I had to wait it out until I could get a chance to pull him aside.  It was a really good set.  The guy was J.J. Cale, and he was very warm and friendly, and I was charmed.  I wasn’t yet aware that he was already a legend.

Have I lost any of you younger readers?

Along with photographing concerts from backstage at Red Rocks, I got to join Willy Nelson and his group of outlaws for ribs in the caverns underneath the stage.  I built a darkroom and developed black & white photos in my little basement apartment.  And I partied.  Booze, Quaaludes (are those still around?), cocaine, white crosses (to stay awake for the party).  Had a couple of flings with performers that actually liked me because I wasn’t terribly enamored with their so-called celebrity status.  “Sorry, but I won’t abandon my guests to pick you up at the airport and go with you to the mountains.” I was mercifully protected from the things that often happen to naive young women who live in that world.  I left the music business (the agencies all moved to the West coast or Nashville), got my first of several “straight” jobs, and settled down for the most part.

Nowadays, I might go see a local band whose members used to work with some of the people from the 70’s, and the on-stage name-dropping is rampant. Not that many people in the audience are old enough to recognize the names that are being dropped.  “I wrote this next tune. It was recorded by Michael Murphy.  I wrote it, but because of a misprint, he got the credits on the album cover...”   The awkwardness of it makes me cringe.  They’re older than me, and still doing that shit.  It reminds me of myself not so long ago.

For longer than I care to ponder, one of the first things people learned about me was how I used to work in the “music business”, photographed concerts, hung out with so-and-so, did cocaine with Tiny Tim.  Not really, but it could have happened.

I literally mourned the ending of what I believed was the most prestigious period in my existence on this earth.  Who I currently was, what I did for a living, my intellectual pursuits after the glory days were not among my talking points.  I had nothing to say for myself other than who I used to know.  I gradually quit doing that.  Not really sure when it happened, but seeing that old house again got me to thinking about it.

The adventures of the 70‘s gradually became a memory that seldom entered my mind. I’ve had enough awe-inspiring, chill-bump inducing events occur in the interim between then and later, that then has become a shadow in the mural of my sojourn on this planet.  It’s a lot less work to be who I am at the present moment, and to appreciate others for...you know.

Glad that finally got straightened out, so that I can now tell the good stories.

RAM