Surprise Me With a Cookie Every Now and Then, PLEASE!

I feel like Parker Schnabel on Gold Rush digging my way through a bunch of worthless crap trying to reach the treasure I believe is under it all.  According to my calculations it ought to be ‘right here’.  The problem is the longer and harder I dig, the lower my confidence sinks.

I’m starving to death for a win!  Somebody take away this stinking plate of slop and moldy bread and give the old lady a cookie.  Please.

Putting gears in reverse, let’s back up a bit in order to see the big picture.  Last June my heart went haywire and I ended up in the hospital.  Eventually cardiologists diagnosed me with an abnormal heart rhythm; they also discovered a coronary artery was plastered nearly shut with cholesterol.  I ended up with a stent and a few medications.  A few weeks later I felt absolutely great and had the energy of a hyperactive child!  It was truly amazing!

Life goes on; in November I had a tooth extracted, and that went well until I reacted to an antibiotic the dentist prescribed.  By mid-November, I felt pretty darned crummy so I went to our family doctor who treated me with two new drugs: one, I later learned, counter-acted my cardiac medicine, and the second drug came with a whole new set of problems of its own.

A week later in spite of multiple phone conversations with the doctor who tells me all of this “is to be expected”; I’m sinking like a stone.  Rich loads my lethargic carcass into the car and takes me to the doctor who is appropriately “shocked” by my condition.  He admits me to the hospital and puts me on an IV antibiotic, saying whatever allergic reaction I had is long gone, but I’m suffering from some sort of non-specific infection based on hospital blood studies.  Long story short, the new IV drug did its best to kill me.

Enter a new doctor.  I am treated for severe allergic reactions, taken off the drug that has neutralized my heart medicine, stabilized and sent home with a minor UTI that no one wants to attempt to treat until my body “rebounds” a bit.

Time passes; I simply do not regain my strength.  Thanksgiving comes and goes.  Christmas comes and goes.  The new year, my birthday, all are miserable.  I’m nearly afraid to go to any doctor, but when I do it’s around the first of February.  He prescribes a 7 day round of a gentler, friendlier antibiotic for the miserable, relentless, merciless urinary tract infection.  I finish the prescription with no problem!  I actually feel pretty good again, not great, but good.

February 8^th, I take Rich to Little Rock to a neurologist.  Over a period of 6 weeks the muscles in his left hand have begun to shrink in obvious muscle wasting and we want to know why he is dropping forks and having such a hard time writing.  It takes 6 LONG weeks of referrals and scheduling to see a neurologist.  All along, I can’t think of anything except the shocking changes in my husband’s hand.

On the way up the stairs to his appointment, I have to keep stopping to rest; my chest hurts, and it’s hard to breathe.  Rich panics, I minimalize.  The truth is I am sick and tired of being sick and tired, and absolutely determined to get help for Rich.  It has taken us such a long time to reach these stairs; I damn well am going to climb them.

Over his protests, I push on.

Once inside, we are assured “most likely” Rich’s muscle wasting is the manifestation of significant peripheral neuropathies related to his 25 year battle with diabetes. To know the depth of what we are up against, and to set a proper plan of care, further tests are set for February 19^th.

Riding back home to Hot Springs, I begin to relax.  While peripheral neuropathy is a very serious and progressive condition, I am relieved the doctor hadn’t taken one look at my husband’s hand and said something like, “I think this might be ALS.”

While my chest pain has subsided, I feel heavy and weak. When Rich asks how I feel, I smile and say, “Better.” We stop at Subway for takeout then go to bed early.  The next morning I call the cardiologist.  He says my experience with the stair case is pretty much like failing a stress test and fears my stent may be clogged.

Check it out.

Another heart cath.

Routine.

Only not.

This time the catheter tip tears a hole in a coronary artery.  With each beat of my heart, I feel life spilling out.  I see Rich’s face, hear Father’s voice; I have missed him so much since he died 2 years ago.

I try to tell the doctors I don’t feel right, but instead say “Daddy”.

I wake in ICU.  Good news, bad.  I didn’t die.  I didn’t need emergency by-pass, but my arteries are seriously diseased.  And I’ve bled into my chest cavity and it will take a little while for the blood to be reabsorbed.

Stabilize.  Rest.  But not for long.  The next day, back to surgery for placement of a 3^rd stent, without which, disaster is sure to follow.

What follows in life, what leads?  How can you tell anyway, and does it matter, does anything really matter in the end or the beginning, or all the beautiful and flawed pieces in between?

Where the hell is the pony under all of the crap? Where’s a cookie for a woman starving?  An ice cream cone for the man she loves?

My husband nearly gray with fear, his hand like a soft claw touching my steel face, his eyes semi-liquid changing like the sky, hazel, blue, gray, hazel again.  The muscles in his face too smooth, (his glucose is low), idly hang like sheets or sails waiting for the wind.  But wind doesn’t come.  Or perhaps it does.  Except this time, when it does, it’s the worst storm of our lives.

Neurological test results are back.

I’m sitting in a wheelchair on a keg of 1,000 new drugs, my heart, a waiting fuse, the doctor’s words, a reluctant yet persistent match.     Then it all explodes.  The neurologist’s eyes locked into mine.  Suddenly she is a mime full of woe; but if mimes can’t talk, why is she using words?     ‘Serious.     Urgent.     Significant Underlying neuromuscular disease.       Invasive.      Tests.   Watch for twitching.   She looks at me as if I am a widow.    itty?  itty?  Can you hear me?’

The world disappears inside a microscopic black hole.  Rich and I hold hands, swirl through choking, cruel air until at last he is pushing my wheelchair back to the car that doesn’t matter anymore, to drive back to the house that isn’t home.  Home is a perfect crystal, it is the fiber of the irrefutable love that binds us together with steel and silken threads we’ve earned and created along the way.

Rich  asked me to share with readers that our lives have been challenging for a long time, but it wasn’t until the past four years, that those challenges have focused on health.  We moved to Arkansas full of hope and energy.  Three weeks after arriving, Rich had a heart attack.  One thing led to another,and in the span of four short years, we’ve both been hospitalized five times.  We don’t blame Arkansas, well, maybe a little; the reality is timing.  We are stoic people who avoid drama like the  plague.  We are quiet old folks who have a lot of fun together.  We retired to Arkansas because it is one of the most beautiful states we’ve ever seen. We assumed our health would stay strong and consistent; we believed we’d face each new challenge life threw at us the way we always have.

We’ll keep fighting, but if we have our way, it will be closer to our family.  Neither of us is a  Parker Schnabel; we’re not 19 any more with the bright shiny world beckoning.  But we know our places in it.  And we know ours hearts, as battered and bullied as they are, and we know our love is a universe of defiance and intensity, as well as a gentle cradle for holding all that is precious, and an indestructible bastion of never letting go – even past the last days of this long walk we make together.  And we take great comfort in knowing we will always walk together, never alone, through long, twisting hallways and sunny great rooms inside fortress grounds and gardens we build every day out of love.

Advertisement

The power of a strong inner life…

It’s easy to imagine because I’ve seen it a thousand times in my head, a bit here, a fragment there; pieces of a grand puzzle coming together like a rainbow after a long storm, one color fitting snugly against the next, complementing the whole, yet amazing on its own. That’s how it is, this forest inside my head, the enchantment of the soul visualized by the mind’s eye, making it real.

I’ve been to the forest many times, beginning early in childhood when monsters came out from under the bed, their terrible teeth threatening to eat me alive.  I visited again during adolescence, those years of longing and drama.  The stillness I found amongst towering branches and the scent of deep pine wafting through tangled jasmine was the white knight whisking me away from turmoil, transporting me to a happier, more welcoming place.

Had it not been for the forest, I may not have survived the first twenty years of my first marriage with its intoxicating balance of delight and cruelty, and co-dependence so cavernous it erased every good thing that crossed its path.  But when I was 49, my body made the decision my mind had refused to make, as I stumbled into the kind of illness that consumes every ounce of strength and deliberate thought possible.  Suddenly my body was the tomb I was buried in. 

After the anger and grief, temperance set in, and I found in the midst of rubble, the most peaceful cave.  This silent, empty space was perfectly accommodating, seemingly knowing my needs before I’d consciously recognized and acknowledged them.  I dwelt in that space for three years, until one morning I heard the most delightful sound of a red bird singing on the window sill beside my bed, and his vibrant energy and contagious joy became the crutch I used to move from the cave into the forest of the outer realms of the world.

Pushing my weak body and placid mind, I moved forward, one step at a time.  But the cave of introspection and intuition had become part of me, so I brought it along ever conscious of its presence, and I used it like a self-help manual, or a book of new rules, rules written for and benefitting no one but me, and I called this newness of thought The Self Is and its code and content, The Requirements of Self-Is-Ness.

With renewed clarity of mind, I coaxed my body to do its part to save Self so that I might tell my children about this most amazing revelation I’d discovered within, the absolute fact that we can rid ourselves of the poisons that cripple us, that we can grow whole and find happiness within the boundaries of our own bodies simply by understanding the power we hold. 

I wanted to tell my daughters there are safe places that provide shelter when we become our own worst enemies, or when we allow the world to infect us with unhealthy ideas and role assignments, and how it is necessary first to go in in order to work ourselves out.  I wanted to tell them that the results of caring most tenderly for ourselves with absolute honesty and the tenderness we would afford a child, will carry us past any solution we may have previously imagined, because time spent in the cave is time spent unlearning, converting old assumptions and presumptions of implied fact into authentic personal truth. 

During the day, I worked to regain strength and balance.  When the time came I sought help from a neurological therapist who taught me how to create and integrate new tools for thinking into automatic responses.  We did this to improve my short term memory and to help me adjust to the loss of many memories of the past.  At home, I took on new tasks, trying confidence on as if it was an exotic new dress, and I embraced critical thinking in ways I’d never imagined before. 

I deliberately broke many status quo rules, as difficult as that was for me.  Friends and family either moved away from me, as if to avoid catching whatever madness had settled upon me, or gathered closer as a show of support for something fragile and young that was determined to live.

It was a difficult but satisfying process. At night I began building a house in my mind, deciding to return to the protective forest of my youth, using this technique like a new tool.  Building this house was a deliberate exercise, lasting an entire year. I began by mentally leaving home and then I imagined a beautiful green valley, lush and inviting.  Arriving in a car packed with sentimental belongings, none of which were particularly well suited for survival in the wild, yet each priceless thing, emotionally necessary, I began unpacking, moving each article into a back corner of an abandoned, leaking shack that I would soon transform into a comfortable home.

I can still see every item I’d packed for the journey, a foot pedal sewing machine, wooden bowls, blue glass, quilts and scraps for making more, good books, pen and paper, string and basic tools, and a seemingly endless supply of candles. 

This mental exercise strengthened my resolve as I built a home from scraps I imagined had been abandoned by another woman who had moved through her own personal forest, discarding possessions she no longer needed as she traveled forward.  In the end, what illness had taken away, newfound physical and mental health and deepening spirituality returned one hundred-fold.

Today I visit my cabin often; I sit on the porch under the stars, or drink coffee beneath the warmth of a quilt, and watch in perfect peace as storms pass outside.  Every day each of us is healing and growing at the same time; that’s what we do on this journey.  As for what comes next, I simply cannot say, but today is good, and that’s enough for me. 

There are so many paths leading home.  The lesson for me is learning to respect myself by caring for that timeless child within, and to listen to myself.  When I do these things, the daily practices of the Requirements of Self-Is-ness are easier to follow in spite of the clamor and chatter of those who confuse self-care with selfishness.

I believe personal forests are essential; without a quiet place to contemplate the pace of the world and it’s sharp, narrowing judgments, too much time is wasted feeling constricted or sad by our personal limitations.  I choose to live an active inner life, working to make my home in the physical world a better reflection of the healing forest in my mind, anchoring myself, providing safe passage for the infinite child who lives inside.  

 

When your heart takes over the show…

The signs were there.  But my bossy brain, as disciplined and intent as a Sumo wrestler assigned them to the wrong room, unwilling to admit she may have made a mistake.  When the body revolted causing a scene, the doctor was called, and well-intentioned-rationalizing-I-Can-Do-It-Myself-Sumo-Me was sent to detention hall where I’m trying hard to blend.

It is not asthma, the drain of wind from great sails; it is not the gut gone tight and bubbly in the gladiator coliseum of social and political riot.  No, it is the sweet, red pump that drives everything.

As often is the case in this world of doublespeak, the tests that had moments before been reported positive, coiled, rose and struck like a snake interrupting my happy dance; and the interpreter of medical lingo on the other end of the telephone, (her voice as calm and cool as a summer melon cut in half), explained that was bad news.

So now the road forks, one sign pointing toward doom, another toward freedom; but the third trail marked by the largest sign of all, its path rutted by the passage of thousands of determined feet.  This is the direction I have chosen, the sign marked Onward, with Hope and Determination.

On June 26^th, at 10:30 in the morning, my body will join the long line of silver headed warriors lying on gurneys in front of the alter of stainless steel doors that are as cold as a gnat’s teat, watching through a veil of numbing drugs, as the doors swing open then close like jaws around the lives of the hopeful.  Just like a busy ice cream shop, or a government office, I’ve been assigned a number and will wait my turn for the Great Oz while my best friend/lover/husband grinds his teeth in another room the same way I’ve ground my own for him each time he has taken this trip.

 My heart is huge.  My heart is durable. My heart is not close to giving up.  I’ll be back soon.  You’ll see.

And PS, I love you all.