Sunday, October 8, 2017

Pushing Through

Wait for it…. Wait… It’s coming… Four little words strung together forming an innocent question, “How are you doing?”.  I really don’t mind being asked – I’m just sometimes at a loss for the best answer.  So I gauge my response by the individual inquiring. Was it asked to illicit the rhetorical, “Fine, and you?”  Or can I answer honestly; “I’m f** exhausted”!

How I am doing often depends on my level of fatigue when the question is asked.  Truth be told, sometimes it is the worse symptom I face with this illness.  Can’t plan for it, or predict its coming.  Can’t determine the reason for when it will strike.  Can’t do a blessed thing when it arrives.  Fatigue relentlessly comes knocking, trying its best to break down my front door. And so, I push back with a mighty force I didn’t know I had.

The professionals say, “use it or lose it”, as if a worn out clique is really going to help.  The one thing I have to do is also the one thing I cannot do easily – move.   Many days I want only to sit on my couch, feet up in a fully reclined position.   Resting my limbs in a corpse like fashion.   But I am overwhelmed with the thought that someday I may not have the privilege to “use it”.  I’m left to push through with every ounce of energy from my weary soul.

My body’s weakened muscles are due to the signals in my brain being interrupted.  It is like that,  “Can you hear me now?” problem we’ve all experienced. Static and intermittent sounds come through the line – making communication impossible.   This is what I deal with every moment of every day – but I push against the frustration and try to make sense of my bodies muffled messages. 

Fatigue, a word I once reserved for an athletes’ exhaustion after finishing an event.  It was the reward for their efforts and showed strength & fortitude. Now, fatigue means I’m competing in life at the highest level of endurance.  Every moment lived pushing means I’m in the game.  And on the sidelines cheering me on is humor and faith – giving me a new set of rules to play by.  With every exhausted push, I get to trust in something greater than myself.

 I’m now ready for the question when it comes… 

  “How are you doing?”
 I respond in truth saying, 

“I’m pushing back, pushing through & pushing against losing it”.

Monday, September 25, 2017

Shish Kebob

I am not a person who easily gives away a moments sleep.  I need (truly need) 8 hours a night without interruption.  But that devilish invitation to run wild in the playground of terror was unavoidable the past few nights.  Just like that – I am alert and giving life to imagined scenarios.     

         Writing about it in the light – makes those feelings of dread I experienced (during those ungodly hours of night) seem crazy.  But there I was, tossing and turning, going over every detail (actual or imagined) about my failed attempt to host a party.  With all the possible anxieties to hold me captive, the food I chose to prepare & serve became my tormentor! 

I woke reliving how everything prepared tasted terrible.
(Oh Lord, Shish Kebob)
I felt embarrassed and ashamed of the presentation to my guests.
(Good God, Shish Kebob)
I feared the possibility I might have poisoned everyone.
(Have Mercy, Shish Kebob)

Could chicken and beef skewers really have that much power over me?

         On the third night of waking up panicked about Shish Kebob, I stopped the demon in its tracks!   I realized that I was my own worst enemy – listening to a wicked tune.  The get-together, love and laughter shared should have been the lullaby soothing me to sleep.   I had taken my eye off of what was good and allowed Shish Kebob to fill me with foolish worries.

Next time your mind is occupied and fears lead you on a path
of sleeplessness, ask yourself …    Is it something real?  
Or quite possibly, is it just Shish Kebob?

Friday, September 15, 2017

A Storm is Brewing

I knew it in my bones, felt the atmospheric pressure change.  It was a long way in the distance but nonetheless the warning signs were there.  The day before me held clear skies and bright sunshine with the promise of warm temperatures. All seemed as it should for this September day.

Oh, but a storm was brewing...

Leaving my house for work today meant slow and steady steps.  The amount of energy it took to dress, drive the car, unlock the office door and sit at my desk was nothing short of a marathon.  I took a moment to celebrate the victory of completing these events by lifting my arms and raising my eyes upward - as any triumphant marathon runner would do!  The routine of my job allowed for a slower pace.  The kindness displayed by my boss confirmed her admiration and respect.  The day's work was before me and I chipped away at each task.

Oh, but a storm was brewing and could now be seen...

I pushed back my chair and took a deep breath.  With that cleansing and refreshing intake of air - I gained a new perspective.  Today was to be another day of acceptance.  These moments come slowly to me, gently and usually with clarity.  Over the course of my illness, I have experienced many of these moments.  I love the saying, "God meets you wherever you are..."  and I believe in these moments of grace - God gives me a stronger sense of purpose.

Now the storm is raging but I have my umbrella and rainboots...

I am suddenly aware that my quest to continue working as before simply cannot be.  I feel a sense of freedom recognizing this truth and gain a deeper acceptance of my limitations - not with heaviness of heart or any feelings of failure.  As the rain pours down - I am protected by having the faith to know and trust that I can withstand this storm.

"God meets you wherever you are (in the storm) - 
but refuses to leave you there."

~ Praying for all those struggling after the devastating hurricanes~ 

Thursday, August 24, 2017


Ken wakes early with the excitement of a man who clearly has a purpose.  He slips out of bed to begin a morning routine worthy of applause.  With his four-legged companion by his side, Ken responds to a calling. Like the previous mornings,  he can be found outside attending to his new loves.  The geraniums, impatiens, begonias and petunias lining our property wait patiently for him.  They thrive with the outpouring of love by their protector and flourish in the arms of his care.  He is a natural in this role and I crown him the title “Plant Whisperer”.  I believe he may have bestowed names on a few plants and favors the ones who have cultivated from the smallest of seedlings.

Ken moves about meticulously – watering & repositioning planters to maximize the sunlight – and shade to those needing a cool, dry space.  He carries them around our property as if challenging each in their new surroundings. His plants respond by standing tall and vibrantly lush in full bloom. No pot, planter or hanging basket is left behind or forgotten in his care.   With the strength of a defender, armed only with a watering pail – Ken seems to whisper the confidences needed for these plants roots to grow strong.  Roots, which are the life source for the beautiful bouquets we behold.   Flowers, which are the outward sign of the plants response to the “whisperer”.

Heed the whisperer of your soul.

Can I be changed - transplanted to the unfamiliar?  
Trusting there will be light and living water?   
 Are my roots deep & faith strong enough to go where I am being lead?   

Heed the whisperer.

Saturday, August 5, 2017

Red Light

Those mornings I wake with heaviness in my spirit, are far worse than any heaviness found in my body's affliction.  Today, as the bright morning sun filters in through the windows, I sense a sorrow deep within me that must be acknowledged.  Although vibrant colors surround me at every angle, I feel only the absence of light.  These are the toughest days for anyone in the midst of troubling times; and I take a moment to unite myself with all those suffering. I am not alone as I lift my prayer to God for strength and healing.

Today must be lived with a little darkness – and curse the darkness I do!  I am irritable, unbearable, moody and downright pissed off.  I yearn for the ability to get up and go, for the independence stolen from me.  Over and over lamenting about how hard every task is to complete and how tired I am.  Save me from myself!

Today, a Red Traffic Light will be my saving grace.

As I head down Jericho Turnpike, driving locally to run an errand, I approach a Red Light.  Waiting with little patience, I count the minutes for it to change to green.  “Does it always take so long at this intersection?”  “Maybe the light is broken?”  I contemplate going through just as the green light appears, giving me the go ahead. 

Off I go, but not very far.  As I approach the next intersection I face another Red Light.  “This is strange,” I think as I make my way to a stop.  The lights seem out of sync.  I tap my hands on the steering wheel, willing the light to change.  Nothing…. puzzled and confused, I look around to see the people travelling in cars next to me.  They all appear surprised.  Some venture through the Red – unwilling to wait it out.  Horns begin to blast and cars swerve to get past the seemingly broken Red Light.  I remain calm and unaffected by the madness around me.  Could a busted traffic light have the power to ruin someone's day?  After what seems like five minutes, green shines allowing us to move forward.

Continuing my journey down Jericho Turnpike, the approaching Traffic Light is changing to yellow.  I cannot believe in less then a short mile – I would be facing another Red Light.  Just what the heck is going on?  As I approach this stop I look directly into the brightly shining red signal and begin to laugh out loud. 

To witness the effect of this minor inconvenience on the people in cars nearby – gave me a  moment of clarity to break free from my mood.  Do these strangers have some place so important to be or pressing business demanding their attention?  Why the hurry, why the attitude, why the rage?  Isn’t it the journey that makes the destination ever so sweet?  And what journey doesn’t come with detours and road blocks?

The Red Lights made me aware that life moves at a fast pace and sometimes it’s OK to be a little "out of sync".  Stopping is oftentimes necessary to live a complete and fulfilled life.  Almost like the strength to “get up after you fall” – these Red Lights gave purpose to help me “move forward after being forced to slow down”.  

I lose track of time not noticing when the Red vanished, replaced by the Green signal to go.  I remain with my foot on the brake, staring out the window, taking in the sunshine -  all the while listening to the crazy person behind me - frantically beeping his horn to get me to move forward.

Friday, July 14, 2017

Adirondack Moments

This is a story for day dreamers... 
(Thanks Frank & Kim for the inspiration)

There they were, perfectly positioned along the walkway, welcoming guests into the house.  Each chair casts a bright pop of color on the muted white & gray tones of  "The Scozzari Family" beach cottage. The bold pigments offset the tranquil ocean hues all around. Ken looked intently at the colorful Adirondack chairs, storing the design and color into his subconscious memory.  

“Chris, we are going to get ourselves a few of these chairs to brighten up our backyard.”  In all our years together – this was the first time Ken expressed any desire to own a piece of furniture. Just like that, the mission began. For it became Ken’s quest to hunt and gather colorful Adirondack chairs.  He searched with the promise of adding a new one every year.  

The first sighting came on a country road in Pennsylvania with a sign “Amish Made” proudly printed on the outside of the store.  Ken walked right in and selected a bright yellow chair at the far corner of the room.  The excitement of finding and purchasing the first in our collection was immeasurable.  Unloading  then placing it near the pool was a pleasure only we understood.

The years following would bring us to many roadside stores displaying varieties of these colorful chairs.  5 years and 5 chairs later – Ken still finds excitement with every purchase! We have only to look at each chair and remember the song playing on the radio, jokes we shared, where we were going and what we were doing – when we “happened” upon each one.  

Today, you will find us jockeying for the best seat, favorite color and most comfortable design.  Many summer evenings I will find Ken sitting in silence, enjoying the simple pleasure he alone finds – within the company of these Adirondack chairs. 
For me, sitting in my favorite yellow one permits me to daydream - but not about the past any longer.  Surrounded by these colorful Adirondack chairs – I look into the open space before me and fantasize about the days ahead.  I wonder what song will be playing, what jokes will be shared and where time will “happen” to take us.  In solitude I begin to set a new course & mission for us.  It has become my quest – to hunt and gather colorful dreams. 

What a joy to sit in these chairs - visualizing where the road will lead and searching for the promise of tomorrow. 

And maybe, just maybe adding a few more colorful chairs to our collection.

Saturday, July 1, 2017

A Rushing Wind

Sitting in the backyard on this beautiful summer morning brings about a strong sense of oneness with nature.  Perfect temperature in the low 80’s keeps me from running for the shelter of the cool house.  Extreme fatigue and acute weakness are  my constant companions & makes the notion of getting any housework done an unattainable goal.  But the beauty of my surroundings can not be denied

My Chocolate Lab is lying close beside me and I understand a dog’s contentment doing nothing but relaxing in the moment.  I wait for time to pass, without so much as a concern for agendas, accomplishments or pressing matters.  In dog terms – waiting for a yummy treat or playful belly rub.  The simple pleasure of watching Shade’s life could really teach “this old dog” some new tricks!

It is hard to ignore the gentle breeze moving the tops of the trees lining our property.  The dazzling, vibrant colored leaves seem to be dancing to a rhythm only they can hear.   As hard as I may try, the direction of their movement remains a mystery to me. 

The force guiding such motion is invisible to the eye and appears without warning.   A light and gentle rushing from the west.  A hard and forceful rising out of the east.  Flowing and driving winds from the north and south - breathing life into the air.

I look on in amazement, responding to the rhythmic movement of each branch.  Gathering all my strength, I leave the comfort of the porch and venture out onto the grass.  With feet planted firmly on the ground, I extend my arms outward and upward.  Closing my eyes can usually bring about feelings of unbalance – but in this moment – I stand firm. 

The rushing wind seems to encircle me causing my senses to come alive.  I do not move or bend, acting like the tree branches around me, but choose instead to remain perfectly still.  Without hesitating I know that what I am experiencing is the movement of the Holy Spirit.  That mysterious 3rd person of the Trinity - which cannot be seen – is embracing me and I am in the presence of the Divine.

In full surrender, not anticipating or predicting its movement - I respond to the gift of knowing that I am held and cared for.  

Ever so gently, in time with the trees around me...begin to sway.

Pushing Through

Wait for it…. Wait… It’s coming… Four little words strung together forming an innocent question, “How are you doing?”.  I really don’t m...