A Smile

She sat in the front seat looking straight ahead, as the car came to a stop in the unloading zone. Cautiously opening the door, she swung her legs around to touch the waiting pavement.  With great effort she moved to a standing position and reached for the arms of her helpful driver.  I knew by the tenderness of his touch that this gentleman was her husband.  Before taking her first step, she turned and looked in my direction.   I saw great sadness in her eyes and an agonizing weight on her shoulders, which she struggled to carry.  Our eyes did not meet, because of the tinted glass window separating us. 

All this witnessed from my seat inside the building as I looked out onto the parking lot.  I had arrived early in full anticipation of receiving the newest miracle drug.  The FDA had taken months and finally “fast tracked” it through the system to the anxiously awaiting MS community.   I had a bounce in my step, smile on my face and joy in my heart waiting for my 8-hour cocktail infusion to begin.

She came into the room very quietly with her head down, staring only at the floor.  Her husband made her comfortable in the chair opposite me, and quickly went to check in.  She fumbled through her handbag, searching for something.  Never a smile, never a word spoken, never a glance upward – only great sadness.

Yet, I felt drawn to her, a deep connection with this total stranger. 

Our journey to this waiting room was very similar.  The progression of her illness mirrored my own.  We looked to be the same age.  The swag of her gait and unsteady manner of balance made for a carbon copy of myself.  I knew nothing of her story other then what showed on the outside.  But there was a magnetic pull drawing me toward this kindred spirit.   I wanted to get closer, wanted to offer a light in her darkness.

Her name was called before mine and she left in the same quiet manner with which she had first entered.  The wait seemed forever but finally my name was called.  Upon entering the tiny infusion room – I noticed 10 chairs and only one remained unoccupied.  I made my way through the maze of medical equipment, gadgets and gizmos in the middle of the room, and stood before the empty chair.  I said a payer of thanks when I notice that my new friend would be sitting next to me.  

Turning toward her I said with a tone of authority, “Hey, I believe there’s been a mix-up – you are sitting in my seat – I called ahead and reserved the one with a view”.  For the first time, she looked up and into my eyes with a somewhat confused/startled expression on her face.  Ever so slowly her lips curved upward to form a smile.  Brightness radiated, warming my heart.        

** story dedicated to my MS swim friends - who share their smiles with me

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”.

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?

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~ 

Whisperer

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.

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.

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.