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”.