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

22 Feb

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 8th, 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 19th.

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 3rd 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.

black hole 2

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Finding Calm in the midst of Chaos

6 Dec

the sky is falliingWeather reports zealously predicted the emergence of a winter storm of near epic proportions.  As I listened, I was struck by the sound of rising alarm in the voices of meteorologists who paced like caged tigers, and I wondered again where the days of calm and objectivity had gone, seemingly having disappeared like two old friends descending the last mountain, looking back over their shoulders to companions left behind, giving a final thumbs up to them, as if nothing would ever change, as if time and the world would repeat itself as it always had when the sun rose each morning; but the world did change, and comfort once gained from soothing, consistent voices vanished in a populist culture of serial disasters, each horrible and mesmerizing; each uglier than its predecessor, yet understood to be just another wrung on an endless ladder of adrenaline-driven-drama yet to come.

Hoping for the best, planning for the worst, we drove to the market in preparation of the power outage that was sure to come.  How did we know the power would disappear?  Well, actually we received a text message from Entergy explaining that 8,000 workers were on their way to the area, and that outages were expected to last “5-7 days”.  It seemed more a promise than a possibility.

As we drove, we passed 3 or 4 gas stations, each with long, winding lines and a carbon monoxide fog hanging overhead like another warning, or perhaps, a final obituary.

Inside the store, signs of the new world shrank the warehouse sized building into the likes of a small parlor filled with warring tribes, each combatant wearing armor, his or her eyes straight ahead, and the cold dead stench of fear rising.

The bread aisle was empty.

The water aisle was empty.

no water

A half-gallon of milk cost $4.43.

I had a bag of tortillas in my hand until an old man shoved me and snatched it away; pushing his cart away as fast and hard as he could.  On any other day, perhaps he would have offered to reach it for me, taken it from the high shelf and put it in my hand, or maybe he might have smiled as we passed each other on Aisle 8.  But today he was not himself, or perhaps he had never been more himself until the very moment he stole a bag of tortillas from a stranger’s hand.

It caught me off-guard; for a moment, I needed to step away from the crowd, so I huddled next to an end-cap of nonessentials like cotton balls or hair color.  Narrowing my focus, I listened to the sounds emitted from the surging crowd.  Expecting growls of altercation, I was surprised to hear excitement, like a growing anticipation for an adventure yet defined.  At first I believed I was witnessing the emergence of community, a gathering of like-minded souls preparing to endure shared battle, but the longer I listened, I more clearly I began to understand, and I trembled with the knowledge that what I heard was more akin to observers at a public hanging, or a gathering of the pious howling in jubilation at the burning of a accused witch.

Rich and I left carrying nuts and fruit, a couple of bags of chips and 3 bottles of marinara.  We drove like lunatics away from the crowds, weaving through debris already strewn by the wind throughout back roads and city streets.

Once home, we dug through the Recycle Bin, dragging out empty plastic bottles that we washed with hot, soapy water.  After they’d dried, we filled them with fresh tap water.

We unpacked winter blankets.

We filled a basket with candles, matches, flashlights and batteries.

We ate peanut butter sandwiches and shared the last piece of pumpkin pie from the back of the refrigerator.  Then we snuggled under the knitted blanket I’d bought at an estate sale from two daughters who didn’t want it, who had valued it at $3.00, never understanding the emotion and time, the love and careful attention their mother had invested in it.

Then we turned on the outside Christmas lights, rolled up the blinds, settled in, held hands, and watched the snow begin to fall.

snow flakes