The Truth

Unfiltered ~ Unedited

The truth crept up on me like the unwanted vine overpowering the roses growing outside my kitchen window.   With undeniable certainty Multiple Sclerosis has taken yet another chunk out of my life.  I am usually quick to fill the void - with a combination of unwavering faith, overall acceptance and a large dose of humor.  But not this time.  The truth is just too painful for a quick remedy. 

And so, I give myself permission to remain sorrowful to the truth surrounding my disability.  To say out loud, “I am not OK.  That I’ve been better.”  For there is no amount of pruning to free me from my reality.  And no set time to cross into the light.

Some lessons must come out of the darkness.

The thrill of living a full & long life is best captured in rearview images.   It is from this perspective that we recall memories both good & bad.  Checking the area behind is a necessary precaution to see where you have been and adjust to what is ahead.  But forward-thinking Chris cannot stop staring at what is behind her and lost to this disease. Just 13 years ago I would never have imagined the truth before me now.   

And that just might be the cause of so much darkness. 

The Rearview

Can anyone honestly say they look good from the rear?  It is a funny question but one to ask.  I know my curly hair is not how I imagined, and my posture needs some work.  Forget the fact that my “behind” is a little flatter than I care to admit.  A quick check in the rear is all anyone needs.

But I am stuck viewing my life just a few short years in the past. Brighter days behind me are glaring reminders that my physical strength today is reduced to the simplest of tasks completed with the greatest of difficulty.  My legs and arms needing devices to assist with walking and carrying items but a short distance.  The slow creeping progression of my illness (as seen in the rearview) is the cause of so much darkness. 

The Darkness

I hear the rally cry.  As I write these words - my tribe cheering me on.   Ken’s wide shoulders bear the weight of my every struggle.  Our kids witnessing their mom “not at her best”.   Within my home, I am the recipient of fierce love casting a bright light.  My inner circle cannot help but notice cancelled plans & NO to RSVP’s.  But still, they continue to invite.  I receive their encouragement in tiny doses of hope.  

Unproductive days becoming the norm. 

I wake each day with gratitude as my prayer. Stepping into the morning, I gather strength for the hard work ahead. Carrying the cruel truth of my limitations – I will continue to seek and search for a way out of this darkness.  It is on the horizon, this I know – but for now I have only the strength to say, “I’m going to be OK”.

 

Intention

To balance out my Netflix binging, I am trying to read more novels.  Settling in with a paperback (large print no longer an option) and I am instantly entertained by a new cast of characters.  With my current choice of a memoir, you will find me laughing out loud at the authors’ creative & imaginative storytelling.  All is well until I am nearing the end of the book.  Somewhere on page 196, smack in the middle of a paragraph is a sentence that stops me from reading further…

“The Universe is a series of unintentional consequences”.  Seems harmless enough but the stringing together of these words and its implication cuts me deep.  In that moment – I want only to grab the remote and fast-forward past this section of the story.

I cannot stop reading the sentence. Turning it over. Pulling it apart. Breaking down each section, each word.  “The Universe… series… unintentional… consequences”.   I am challenged to find any of myself in its meaning.  For mine is a life of intention.  A life defined with a higher purpose by an all-intentioned God.  

Picking up the paperback, I resume reading in the hopes of understanding the authors’ viewpoint.  What I find is a story showing how his best intention was never realized, instead replaced by something altogether different.  Although he did not envision this for himself – it proved to have a wonderful “unintended” outcome.  Hence his sentence (and I paraphrase) – “The Universe just threw him a bone”.

We can all agree that the actions of others can result in some unplanned outcomes.  Free Will being the cause of many unintended ripples running through the world. Some good, some bad.  But with the appearance of each wave in our lives, we must learn where to cast our eyes.  So that when we need to fight and lean in - or - when we are offered a mountaintop experience “unintentional” will never be the direction of our gaze.  

Not to oversimplify a complex theological discussion – but maybe… “Some Unintentional Consequences are the Universe (or Creator) attempting to get our attention”. To interrupt and set us on a new course ~ to hear the voice of angels directing our path ~ trusting in a guiding force whose only intention is LOVE.

"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."   Jeremiah 29:11

Exclamation Point (!)

A harmless text.  Nothing special about the words exchanged.  What set it apart was the punctuation mark that concluded his thoughts.  KC’s choice of the exclamation point spoke volumes!  I remember staring at my phone, somewhat perplexed. Exactly what he meant was unknown to me.  

I am just a mom asking her son a basic question and his short response was sweet but peppered with the (!) indicating STRONG feelings.  Did I say something wrong, was I meddling, maybe he was having a bad day or angry at his mother for another reason.  My mind goes into overdrive analyzing that simple line with a dot (!).

***************************** 

An exclamation used to be my favorite mark at the end of a sentence.  I would see it as an interjection of a sharp or sudden utterance of amazement.  Oh yes, the good old innocent days!  Now life is lived with some level of anxiety.  A pandemic with confirmed cases & deaths still on the rise - I dare say - has given the (!) too much power.  Our every thought in 2020 seems marked with it.

Overly sensitive, maybe.  But as we bid farewell to a year that rendered us vulnerable, kept us off balance and exposed many insecurities – I propose we remove the use of (!) when sending harmless text messages.  Reserving them only for moments of prayer! Moments of awe! And the occasional use telling mom you Love her!

 

Comes and Goes

The positioning of the potted plant on the windowsill provides much-needed sunlight.  For deep within its roots hold the memory of my sister-in-law.  It was gifted to me at her passing.  I tend to the soil; carefully water on a weekly basis.  And with the removal of every brown leaf comes forth the arrival of lush green shoots. The process of accepting loss to clear a path for life unknown is not lost on me.  For what comes and goes is part of the surrendering we must all experience.   

~~~~~~~~~~~~~~~~~~

The evening sun has set ushering in a gloom of despair.  When it comes - I have neither the strength of character nor the power of will to avoid what is inevitable.  My anger at this disease and the simplest of abilities it has stolen from my life has once again - shaken me to the core.  I retreat to bed, pulling the covers tightly around me.  Peace eludes my spirit as I whisper to myself, “It is OK to feel bad”.

I have entered this darkness but am not alone.  God is with me, this I am sure.  I have come to this place to receive the gift of tears.  Cleansing tears that need to fall.  As much as it hurts – I must go through this shadowy night.  Surrender is needed but cannot be rushed.  I remind myself, “It is OK to feel bad”. 

Ken is there with his reassurance of love.  He wants this to pass and falters finding any words of comfort.  The right words just cease to exist.  He leaves me to be with a heavy heart.  

The morning breaks open a new day.  Once more, I am keenly aware of God’s presence. He has not left my side.  My evening tears gone, having cleared a new path providing much-needed hope.  I smile through the brokenness of my illness seeing the joy in life unknown.  For what comes and goes is the process of surrender.  

In confidence I now say, “It is OK to feel good.”

The Fall and Rise

The world finds itself suddenly on pause, left vulnerable to the unknowns of this virus.  I have had to face my own pause head on for many years with fear and helplessness taking the front seat.  But during these pandemic days - my gaze is outward on the world as it navigates thru a disabled reality.  Everyday seemingly falling a little further - and I am left empty.  

Overnight freedoms have been removed.  Essential workers are on the frontline and medical personnel courageously become our heroes.  Any sense of normalcy has been shattered.  The streets, skies and waterways are bizarrely quiet.  In an instance, so many privileges are beyond our grasp. Without warning we seem to have fallen and lack the grace to regain our footing.  This loss of control is unnatural to the entitled world.   But for me, I am all too familiar with the art of pausing.  

 

Normal is but a dream as days turn into weeks and quickly months. Yearning for many simple things we took for granted when this virus did not threaten our lives.  I wait for inspiration from the divine artist to stir my soul.  Await the filling of my empty shell.

 ~~~~~~~~~~~~~~~~~

 

Today is exactly 3 months since the epidemic closed our churches.  But today the doors will be open to receive, with other Catholic Christians, the gift of the Eucharist.   I am overly excited to gather in fellowship after such a long absence.  With our faces covered we sing through our masks; “Lord, send down your spirit & renew the face of the earth”.   (Not exactly sure this is what God had in mind for our renewal.)  But it’s a glorious day to be at mass. 

 

It is time to come forward and receive Holy Communion.  The line is long & patience is required. Waiting for my turn, I am conscious again of how low the world has fallen and aware again of my emptiness.   I move alongside Ken (for support) and approach the front.  With outstretched hands our pastor places the blessed bread in my hands, only to have it fall from my grip onto the floor.   A hush settles over the congregation.  Without pausing, Father bends down low to the ground picks it up and places it back in my hands.  I am mortified but move away, remove my mask and consume the Bread of Life.

 

Making my way slowly back to my seat, I am filled with meaning as to what just transpired. The fall of what is most sacred (our world) will not remain in this low place.    It will be lifted and in the rising we will once again find healing.  I wholeheartedly trust in God’s plan for me – as I am witness to my own fall & rising with MS.  And before me now, I have seen that same assurance of God’s promise for our world.

 

A glorious day to be gifted  a story.

 One, which most certainly will be titled …“The Fall and Rise”

"without ceasing"

Watching the sea of people packed into Time Square – cheering & counting down the arrival of 2020 – makes my comfy couch seem even more comfortable.  Ushering in a New Year with the added twist of beginning “the roaring 20’s” decade has me feeling rather nostalgic. Maybe it is my middle-age view, but the dawning of future days cannot be imagined without reflection on some wisdom I’ve picked up along the way.  

The 10-year snapshots of days passed are almost surreal.   It’s like looking at the pages of a glossy magazine portraying “the best & worst” of times.  Each frame of my memories now has this chronic, unwelcome, fateful, fearful MsMonster lurking about.  The full smile across my face cannot mask the dreaded presence of fatigue.  My body language, either sitting or standing, highlights my battle to remain strong.  And a closer look into my bright eyes does little to offset the weariness behind them.

My MS diagnosis… undeniably present this last decade…  has also been my greatest teacher.  Being in the classroom of loss - has slowly taught me to appreciate the things that make a full life.  And like an old Polaroid photograph from years ago - time is needed to develop that  kind of understanding.

Today, in our digital world (where photographs are taken & shared freely) life seems to be always on display.  But the truth of each moment captured lies not in what is observable.   The imperfections within us reveal what it means to be fully alive.  And we are called to honor the gift of life from our glorious creator no matter how imperfect.  

Armed with this wisdom comes a new mindset on the adventures before me. It is “without ceasing” that I choose to live & be seen in the coming days.

         “without ceasing”  I will look to the heavens to guide my every step.

         “without ceasing”  my hands will fold and my lips will utter a prayer.

         “without ceasing”  I will never forget the hearts who shape me.

         “without ceasing”  the light inside of me will shine onto others.

         “without ceasing”  I will seek out people who challenge me to grow.         

         “without ceasing”  trust will reign in my heart

         “without ceasing”  I will move and push and never give up.

         “without ceasing”  I will receive the blessing of each outstretched hand

                                         offering help as they walk this journey with me.

Happy & Healthy New Year!!

May your days be ceaseless in Wonder and Awe!

Ice in My Glass

“My mission in life is not merely to survive, but to thrive; and to do so with

 some passion, some compassion, some humor, and some style.”

Maya Angelou

The temperature is perfect on this summer day as I float in the center of the pool.  With a delicious beverage delivered (courtesy of my cabana boy), I enjoy a momentary feeling of utter bliss.  Ken tests the water with those colorful strips; purple indicates the pH is off resulting in a visit to the pool store.   I remain captive on my raft with drink in hand.  He returns to carefully measure & pour the chemicals into the water. I watch, taking note of all that he must do to keep things perfect for my floating.  There is a comfortable quiet between us as I continue gazing in Ken’s direction.  This time noticing the red patches of poison ivy on his arms, the result of pulling weeds maintaining our beautiful flowerbeds. 

It’s a lot for me to take in and I recognize immediately - all his responsibilities to keep me afloat.  It is painful viewing my inability to “carry my load” around here.  I can do very little to unburden him of the many tasks he performs for my comfort & happiness.  All I can do is receive the gift of floating - trying to regain that sense of bliss.

And so, time passes as I recline on my raft in the middle of the pool.  Eyes fixed on Ken who has not stopped working.  The last thing I want is to have another need... but alas, that refreshing drink made especially for my pleasure has gotten warm. Finding the courage I lift my glass (OK, maybe momentarily shaking it) and ask, “could I bother you for some ice?” Ken’s response is priceless, worthy of this story. 

Exhausted, dirty, itchy from poison ivy he smiles, grabs my glass & begins moving toward the house.  Stopping, he turns and in the sincerest way asks, “What’s it like to just show up?” He means no insult or harm.  His words spoken to acknowledge the truth that is often silent between us.  

In our usual way – we laugh.  His laughter coming from a place deep within that would do anything to please me.  And my laughter spills out from an awareness of my dependence on him.  Together we find humor in what could easily destroy us.  All that we are and all that we have is a combination of our efforts to strive, to thrive and to live a blessed life ~ always with a little ice in my glass.