Showing posts from 2017

Bittersweet Symphony

This is a "repost" from September 2016.  It tells the story about how I have become like a conductor - orchestrating my way around Multiple Sclerosis.   
Bittersweet YES - but beautiful just the same.   These words give voice to what that feels like.  
(Thank you to my sister Pat, for the beautiful illustration) 


With my hands clutching a small imaginary baton, I feel a sense of power. At my command a symphony lies waiting to be composed with a melody waiting to be heard. The players are all assembled eager to please. I am perched high on the podium, self conscious and wary of my ability to bring this song to life.
I am ready to let go and give in, releasing myself from any feelings of despair. In return for this release, I gain confidence in my capacity to create a masterpiece. I am the conductor and responsible for all that follows from the movement of my baton.

Every morning when I arise I am faced with the reality of my circumstances; but I un…

A Time to Behold

A butterfly circles and glides past me with sovereignty reserved for God’s holiest of beings.  Its magnificent design embodies the spirit of heavenly angels with delicate wings emulating the autumn sky. There is a gentle aura of grace as it floats through the air. Peacefully drifting, awaiting only the invitation to be noticed. 
How blessed I am to behold this divine creature.
I could have easily missed it, as in days past.Walked absentmindedly out the door, down the porch steps and into my car.Gone about my day, missing this gift sent from heaven above.
But today, that was not to be…
For this is the story of my current life and it’s unhurried pace. It is living in the present tense with gratitude for the breath filling my lungs. Standing faithful and determined not to let trials cloud what is gloriously unfolding around me.
Through the movement of the butterfly – I am beholding the angels and saints who have come to let me know that I am not alone. This encounter with the butterfly gra…

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 t…

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,…

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…

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…


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 ba…

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 lit…