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Friday, February 10, 2012

Slides and Ladders

Some people think we live in linear time. Those of us who have sat up with the dying ones know better. We know that as the weeks; turn into days, the trudging march of death limps on and the mind escapes. Our loving father or mother might become a child again as liquid fills their lungs and they gasp for breath.  There is a reason so many last words on the battlefield are the endless echo, “Mommy, Mommy Mommy…”

And as our loved one’s mind returns to youth and fairer days, so do we often do as well, seeing vivid memories of days gone by. It is like this outrageous game of Chutes and Ladders that is played upon a deathbed. We progress forward with each a gasping breath to our end, only to fall back in time within our mind to lollipops and summer days.  

This is “Slides and Ladders, “ Linda Stotsky’s jacket story for The Walking Gallery. 

"Slides and Ladders" A jacket for Linda Stotsky

Shall I tell you Linda’s linear life? I can tell you she was a good child. She is a mother of three. She dedicates her life to healthcare. She is @EMRAnswers on twitter. She personally saw to the installation of electronic medical record systems, knowing full well how positively they could impact care. Then she focused on HIE (health information exchange) implementing the first payer based HIE which included e-prescribing in Tennessee to help improve coordination of care. But before she did all of these things she was a loving daughter.

on the good ship lollipop

She was a child who loved her uncle I.O. Silver who was a compassionate doctor.  Every time she visited she would sneak down to his office and take a lollipop. At 13 she was a candy striper who helped the sick at the local hospital. As a teen she became a drummer and filled the home with music. 

Young Mother

She had her first two children when she was young, and grew into a woman at their side. “Mother” was the greatest job she ever had. Later she would have another child who was a child of her heart she named Micah from the proverb, “justly, love mercy and walk humbly with your God.” At 14 months they found out Micah had NF1 (Neurofibromatosis-1). It is a mysterious gene disorder that affects one in 3- 4,000 births. Many afflicted with this disease have benign tumors that grow at nerve endings throughout the body. Most often a symptom of this disorder is 7 or more cafĂ©-u-lait colored birthmarks greater than 1.5 cm. Linda and Micah spent years informing others about this disorder. Micah has a mild case of NF1 and thankfully is tumor free.

Child of my heart

When not caring for her children Linda spent years working in the medical field. She was an administrative assistant to a private psychiatric hospital, then a clinical practice manager. She waded through reams of paper and medical records constantly on the phone arranging pharmacy changes and trying to contact patients.

EHR Answers

During this time she also became her mother’s caregiver. She juggled taking Micah to preschool and overseeing her mother’s care in the nursing home. Care coordination was non-existent. She became her mother’s walking medical record. Her mother was routinely left without needed medications and Linda would have ask to see the orders and administration record. She was constantly fighting for reinstatement of orders and proper care. 

Linda would often have to rescue her mother “Against Medical Advice.” She would check her out of the nursing home and into a hospital to get her mother stabilized.  The years went by and Linda saved her mother again and again.  Micah got so used to the hospital visits he knew where toys were kept at each facility.

This was their life: preschool, work, home and hospital. Up the ladder they went. Stabilize the patient, and then down they went again. Finally the day came when the doctor said it was time to let pneumonia run its course.  No more saving.  It was time to welcome the old man’s friend.  So Linda sat at her mother’s side for three days and watched her die.  The morphine would drip and the breathing would slow and each of them would visit another time within their mind. 

Why call this Slides and Ladders?  As a child playing Chutes and Ladders it always bothered me that the ladders never rose up to meet the slides; there were so many spaces between.  The game was so long and it seemed an eternity of rolling the dice, plodding along and only occasionally zipping ahead or falling behind.

In death it all combines.  The ladder, the slide, the woman and the child all exist within one moment.  Time stops.   Roles are revered and a child becomes the mother. With such grief she sends her charge into that dark of night, comforted by the milk of the poppy and nighttime prayers.

going down the slide

And the night watch never ends.  As the years go by, Linda relives these days within her mind.  Wondering how it could have been better.  Why not rescue her mother one more time?  Why listen to the doctor?  Again and again she climbs the ladder.  And within her sleep she slides and calls out: “Mommy, Mommy, Mommy…”

Slides and Ladders

2 comments:

  1. Regina,

    I am speechless. You remind me again, why I do what I do every day.

    I will instead quote you. "You shall go forth and wear your jacket at conferences spreading the word about the importance of patient data access and patient centered care. You will be brave and you will be proud, for you are a member of The Walking Gallery."

    Thank you for this amazing honor. I will talk, scream, tweet, speak and blog about it at every opportunity. I am honored to be a member of your "mob". And grateful for your tireless patient advocacy. I adore you.

    With sincere appreciation,
    Linda Stotsky
    @EMRAnswers

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  2. As a woman who sat with her Mother through the fight against colon cancer and it's subsequent loss, this piece brought me to tears.
    You paintings and words are beautiful and powerful. Thank you for doing what you do!

    ReplyDelete