Stair Steps

This is story about the jacket painting of TomEvans, MD.   If you read Tom’s biography you’ll see many accomplishments in his long career.  He has succeeded at so many things.  He is President and CEO of Iowa Healthcare Collaborative.  He has a BA, MA and MD to his name.  He was the Chief Medical Officer at Iowa Health System.  He was on the board of the National Patient Safety Foundation and is currently working with HEN’s in the Partnership for Patients Initiative.

But today we are going hear about Tom’s failure.   

This is Tom’s jacket: “Stair Steps.”

Tom is the eldest of nine children.  So like many large families they were arrayed as stair step order in family portraits.  In this painting you can see Tom, his father and all of his siblings in descending order.

Here is Tom telling story that inspired this painting:

“This story is about my mother.  As a family physician, and she a nurse, we always had a fairly frank and open discussion about medical issues.  These took on an entirely new and unexpected dimension when her health began to fail. 

I am the oldest of 9 children born over an eleven year span.  I think we were more of  a herd than a family sometimes!  My mom was an RN and worked nights at the hospital.  Dad was an insurance agent.  My parents were always there and worked hard to make sure everyone had what they needed. 

Mom became diabetic late in her 50s.  Always too heavy and non-compliant with diet, she never took real good care of her diabetic management even though she was a nurse.  I think she was in denial.  She was a happy, loving mother and the perfect grandmother to our kids. Complications began to catch up with her in her 70’s and by age 77, she had accumulated several medical conditions that made her a prime candidate for the medical system.  Her diabetes was a constant challenge in balancing diet and insulin (she ­refused to exercise!).  She also developed heart disease.  She had a “silent” heart attack (no symptoms) and almost died.  After a valve replacement and bypass surgery, she was recovering nicely when the wheels began to come off.

As the oldest son and a physician, my role evolved to make sure Mom’s medical needs were met.  I found myself  moving from a “visiting my parents” to a “making house calls” mentality.  I also became quite vigilant for patient safety issues in her care.  I saved her life three times from medication safety issues.  Twice when in the hospital, she was over-medicated with narcotics.  Neither situation required Narcan, but both required significant observation and dosage adjustments. The most dramatic intervention what when my father called me over to their home to evaluate Mom as she "just wasn’t right."  I watched her become unresponsive before my eyes and called 911.  Before the ambulance arrived I put together that she might have double dosed her insulin.  While a normal blood sugar is between 60 and 110, hers was 7.   She was having a hypoglycemic reaction and needed hospitalization.    

In the last year of her life, I spent a lot of time with my Dad just trying to keep Mom stable and in the home.  Dad was managing her diet, housework, medical regimen (now after the insulin episode), the farm…and burning out.  Mom was occasionally a little confused, and had also begun falling.  While she had never been graceful, but she just seemed to be “sliding down” through weakness now about twice a month.  When Dad was out one time, I came over and found Mom on the floor.  She was fully conscious and content, but unable to get up.  When I asked how long she’d been there, she replied about an hour.  She was just waiting for Dad to help.  I expressed to Dad my concern about his ability to care for her at home, and he basically said he would die before putting her in a nursing home.  So we went on.  Interestingly, her diabetic control was the best it had ever been, so I thought I was doing a good job.

On New Year’s Eve I got a call at 2 a.m. from Dad asking me to come over and check Mom.  After watching “Guy Lombado reruns”, they were heading to bed and Mom fell in the kitchen.  She hit her face on the floor, but more importantly, couldn’t move her right arm.  She had broken her humerus and was admitted to the hospital.  On the way home with my dad that morning, I noted that her care at home now exceeded his capability and he should consider a nursing home. 

The physician taking care of Mom in the hospital requested a “palliative medicine” consult.  Because this is usually reserved for patients at the end of their life, I didn’t really think this would do much good.  The next day, when my dad and I were called in for the results, we were strongly encouraged to consider hospice placement.  Though my mom didn’t have cancer, or some fatal debilitating disease, she had developed “failure to thrive” over the past 6 months…her body just wore out.  Her falling, increased weakness, confusion and decreased appetite were all signs of this…and I missed it.  The reason her diabetes was under such good control wasn’t that her medication regimen was finally good…it was that she had basically quit eating.  When we discussed this situation with Mom in the hospital, and she whole-heartedly agreed.

Mom was admitted to a hospice unit the next day and we had a wonderful two months.  As her arm healed though, her mind got weaker and she became increasingly disoriented.  She was happy, comfortable, all of her wishes were met, and her all of her children were near.  Most important, she and my Dad had a wonderful period to review their life together and to say good-bye.”

So within this image I painted Tom racing up a fire escape, as metaphor, to once again rescue his mother.  The windows have become the pills she is supposed to take.   We live within a world focused on rescue and in the case of fire that can be a great thing.  But within our lives it leads us believe there is always one more treatment, one more path of care, when eventually each of us must end.  We must appreciate ends as much as we do beginnings.  

And I would like to close with Tom’s words:

For me, there are really two points to this story:

1)     Medication safety is a huge issue.  Adverse drug events account for 38% of the improvement opportunity for the Partnership for Patients hospital acquired conditions. Just few classes of drugs account for about 75% of medication harm.  Work focused on blood thinners, management of blood sugar, and pain medication can eliminate a lot of unintended consequences for our patients.  It takes vigilance and teamwork as the family and care providers work together for the best results.  This communication is critical.  We need both sets of eyes to see reality.  Patient and families are part of the healthcare team…and must claim the statement “nothing about me without me”.

2)     As a society, we don’t do “end of life” transitions well.  Often the medical community considers dying a failure, and providers may vacillate between over delivery of care and total disengagement.  The patient’s true wishes may not really be considered, and the family is left starved for information and confused.  I found myself stuck between the roles of provider and family in this situation, and am embarrassed to note that hospice placement didn’t even occur to me…I was fixing her problems and missed her problem.  I wish someone had thought about end of life strategies sooner.  I wish I could rewrite the last 8 months of her story for the sake of both my mom and my dad.   

On Mirrors: The Continuing Conversation on Hospice Cards

I want you to think of how many times a day you look within a mirror. 

Every time we enter the restroom we glance within the mirror to double check our appearance. We use it to take those lovely cell phone pictures that create avatars on countless social media sites.   We stride upon the streets of a city and reflected upon endless windowpanes; a dark copy of our face walks beside us marking time. 

A conference planner once asked me how could we make the assembly space of a symposium remind every attendee how it feels to be a bedridden patient.  I responded that is easy. 

“Cover every hall and bathroom mirror with black paper.”

The planer looked at me quizzically and waited for my explanation.  “The very compromised patient is stuck in his or her bed. Most hospital bedside tray tables do not have a mirror, or if they do it is often broken.  So you spend a lot of time alone without even the comforting gaze of your own eyes.”

I remembered this conversation in relation to a comment the Hallmark spokeswoman Linda Odell gave to Kansas City reporter Elana Gordon in her article "Addressing Death and Dying…Through a Greeting Card?”  This response was related to the petition Hallmark: Create Hospice Cards.

“Odell says she also recognizes that each person’s experience is different.  “Bless her [Holliday’s] heart for leading the way,” says Odell.  But she adds that Hallmark reflects what people are talking about, rather than “picking up the flag and leading the charge.”

“We’re always listening, but we’re listening to a lot of people. We’re talking to a lot of people…and we are always paying attention,” says Odell. “As people are more open about talking about things, yes we reflect what they’re talking about. But we’re a mirror of that…There are isolated data points and we certainly take that into consideration.”

So Hallmark is calling itself a mirror and does not see a reflected need for hospice cards.  I do not find it surprising that the viewpoint of the dying is not well reflected within our society. 

After all we do not give them mirrors.

We give them washed out cotton gowns, institutional surroundings, numbers instead of names, windows that do not open, diapers and silence. 

But we could change that.  We could change it by talking to the dying and sharing their worldview.  We could change it by taking small steps that turn the tide of culture.  If Hallmark created hospice cards and placed them in stores, that would be an amazing step on the journey to better care of everyone at end of life. 

Hallmark you can be a mirror, but I ask you to be a signal mirror.  You should send a message, a beam of light that can be seen miles away; a message that can be opened and read by someone who needs it.

Read by someone in a room without mirrors.

Please Sign the Petition Hallmark Create Hospice Cards

It is 7:20 here

Yesterday, I painted with a class of second graders.  They were little bundles of captured energy.  Their eyes sparkled and they could not be quiet.  The majority of the class finished the project early and a detail oriented few painstakingly completed theirs.  So I offered to tell the restless ones a story.  It was a classic tale of mirrors, apples and coffins made of glass.  I finished in the customary way.  Their voices joined mine in the refrain, “They lived happily ever after.” 

Life may be filled with great happiness; but often holds an equal measure of sorrow.  Life becomes a story, and every story ends.

On Tuesday January 29th-Wednesday January 30^th, I attended C-TAC (Coalition to Transform Advanced Care) National Summit on AdvancedCare in Washington, DC.  The meeting was held at the Institute of Medicine National Academy of Sciences building at 2101 Constitution Avenue. The building is a lovely Art Nouveau edifice.  The foyer and the marble hall are bedecked with stunning mosaics, carefully maintained murals and early 20^th century woodwork.   The remodeled auditorium is a modern, almost clinical design juxtaposed against the rich warm texture of the rest of the building.  I thought it the perfect venue for our topic of conversation.

When I arrived, I asked where I could set up my easel and paints.  The C-TAC volunteers looked concerned.  Although, I had been invited to attend and exchanged emails with the event planner, they had forgotten this detail.  My friends Ted Eytanhttps://twitter.com/tedeytan and Alex Drane assisted me in finding someone who could determine an appropriate place to paint.  Soon we were talking to one of the facility directors.  She looked worried and said she would have to clear this request.  

She left us and we conversed quietly.  She soon returned to tell us the good news: I could paint if I stayed in the marble floored great hall.  The bad news: I could not hear the speakers from the hall.  So I spent the next two days ducking in and out of the auditorium listening for content, live tweeting remarks and then painting the memory of the day.  

The conference day was well underway by the time I began to paint and tweet.  The topic of the conference was advanced illness care. "Advanced Care" is a new euphemism for “End of Life,” which really confused me at first, because I thought it was some kind of gifted and talented version of healthcare.   As a child who struggled through grade school, AP classes were always out of reach.  I did mange to be in some honors classes though.  Honor courses encouraged deep insight, rather than high scores.  

At 9:30 am the panel presentations began with “Care Journey: Personal Reflections on Advanced Care.”  

Amanda Bennett from Bloomberg News told us about her husband’s 7 years battling kidney cancer.  I listened intrigued.   Our family only had 3 months after the diagnosis of my husband Fred’s kidney cancer.  I began to paint with our stories entwined. 

I painted the two kidneys, the inferior vena cava and the descending aorta as two trees in winter; a tree of life and a tree of knowledge reminding us of a bargain struck so long ago.  To the right I painted Amanda’s experience with her husband’s sickness and death.  He died experiencing over-treatment, with blood draws and tests until the end.  I painted Amanda retreating within her visitor’s chair, completely nude and vulnerable as the machine of medicine chewed upon their life.  A resident stands hesitatingly preparing to tell her the end will come soon.

To the left our family story unfolds.  

Fred spent two months on the roller coaster of curative care and one month in the blessed embrace of hospice care.  He lies upon his bed as we gaze at each other. Our three-year-old son Isaac plays with a toy train beside his Father’s deathbed.

Above within the branches of the tree, a nest is perched where the heart resides.  Within the nest a newborn babe searches for the eyes he can trust, the eyes that see the soul.  As Brad Stuart fromSutter Care at Home reminded the crowd.  We end as we begin, our eyes searching for the ones we love.

I spent the lunch hour painting as folks looked over with curious stares.  One lovely young woman came over to tell me she worked in Health Information Technology and was so glad to see someone she recognized from the world of HIT at this event.  I said I understood and wished that were more of us with attending meetings in HIT, End of Life and Patient Safety. 

Soon Danielle Turnipseed from IOM (Institute of Medicine) came over to the easel while I was talking with Ted Eytan. I told her I hoped to be at Health Data Palooza in June but that would depend on creating a patient registration rate.  She commiserated with us.  Our talk led to mutual enjoyment of the walking meeting.  I said,“OH, I have an idea!!! We could have walking meetings with patients at Health Data Palooza!!! It could be cool!  Sort of like walking speed-dating between patients and tech folks!” Daniele assured me she would bring the idea back to the planning committee.

Soon I left for to pick up Isaac from school and returned on Wednesday for day two.  



Our first keynote speaker was Kathy Greenlee, Assistant Secretary for Aging and Administrator for Community Living US Dept. of Health and Human Services.  She spoke about the work of her office and encouraged all in attendance to come by and meet with her about this important topic.

Wednesday’s first panel was entitled “Empowering the Public to Make Informed Decisions and Plans” Alex Drane was the moderator. By this point I had seen several panel presentations with speakers seated at a black fabric covered table and each keynote speaker was peering over a colossal podium. I was getting frustrated that we were only seeing half of their bodies and often half of the energy of a speaker without such physical shields.  

TED and TEDMED have figured this out; we bare our soul when we speak with our whole bodies.  A seated speaker is only telling half of the story.  Then I began to wonder if this presentation choice was not some grand metaphor.  For this was a conference about end of life but rarely did I hear the word death mentioned.  So on the barren field I painted a seated panel.  Their covered table is a coffin.  Most of the speakers exist as a torso above the covered table, but the angle is such that the last speaker to the right reveals his lower body is a skeleton.  Our surface discussion may not contain the word death but it lingers beneath.

As I stared upon this panel, Alex Drane told us a lovely story from that morning.  Her daughter had discovered that Alex has a cell phone that she will always answer.  Her daughter called her and after a pause asked, “What time is it where you are?”  Like many of us who speak about the future of healthcare Alex flies across the nation empowering others.  Hours as well as miles often divide her family.

Alex smiled and said, “It is 7:20 here.”  There was silence on the line as her daughter did some quick mental math.  Soon she responded with a joyful voice, “It is 7:20 here too!” 

This painting has a name: “It is 7:20 here.”  

And it is.  

We are living in this moment and there is no better time to talk about our wishes with the ones we love.  
So in the foreground of this piece two clock faces look upon each other.  Each says 7:20 and the hands that depict the time are the hands of Alex and her daughter.  The clocks also represent the stylized bulb of an onion.  For as Alex’s daughter could surely tell you “Onions have layers” as does our conversation of this day. 

So in the spooling circles above our clock faces there are pennies. 

For throughout this conversation about the care of those we love there is a thread shines like the sheen of money.  Did you know it now costs more to make a penny than what a penny is worth?  And so it goes at the end of life, when often a life is extended not for the benefit of the patient but for the pocket of another. 


Within the twinning branches pills have become leaves like a pharmaceutical Klimt piece.  The copper pills are the Sutent that extended Amanda’s husband’s life and sit within a shadow box in mine. 

Soon beautiful Amy Berman (nurse and Senior Program Manager at the Hartford Foundation) began to speak, her hair a golden halo.  Her face serene as she told us she lived under a death sentence.  She has stage four inflammatory breast cancer.  This type spreads quickly throughout the body.  When Amy noticed it, it  looked just like an inflamed patch upon her skin.  But it had already spread throughout her body.   She was stage four and there is no successful treatment available.  Her oncologist began to explain an incredibly aggressive course.  There would be a mastectomy; chemotherapy, radiation and they would fight for every hour of her extended life.  She looked at the doctor and enquired, “Why a mastectomy when the cancer has already spread?”  He looked at her nonplussed and replied, “You don’t want to look at it do you?”

Amy could not believe it.  He was recommending cosmetic oncology.

He further added this was the course of treatment he would recommend to any of his patients.  But Amy was not “anybody” and she did not want cookie cutter recommendations or a life that was lived in more pain than was necessary.  Amy wanted to live to her fullest and then wanted a Niagara Falls.  In end stage cancer, patients make a choice. They can choose aggressive care and plummet down a step vertical and then float on a horizontal of lingering pain before death.  Or then can live life on the fast-paced stream without added nausea and pain until they plunge down at once as the end nears.

I painted Amy in her Niagara Falls moment as the wind whips her patient gown around her body. Her stance is sure within her half-barrel and her face upraised to greet her choice with open arms.  As I painted it thus, one attendee said, “I thought the barrels used at Niagara were full barrels.” I responded, “Full barrels are used by those who think they might survive the fall.” 

Soon Bill Hanley from Twin Cities Public Radio spoke.  He followed Kent Wilson from Honoring Choices Minnesota.  They both spoke of the amazing program Honoring Choices and the teachable moments that arrive when PBS works hand in hand with hospitals to create a safe place for conversations about end of life.  This is my second time to see them speak and I represented their great work with a tombstone beside our heart tree.

That should have been the end of the panel, but Alex had offered me two minutes to speak.  I have never spoken before about a painting that was only half-finished, but perhaps that was perfect time to speak about this painting. It continues the metaphor of the half-told tale.  We will never make the strides we need to make in end of life care until we value the end like we value the beginning; until we see hospice cards in the Hallmark isle as much as we see cards that welcome new babies.

I stood upon the stage and explained the painting was a landscape and it was set in winter.  I went on to tell the crowd that I taught preschoolers watercolor landscape for 7 years.  I would say, “See the top of the painting is the sky, the bottom is the ground. See where they seem to meet, that is the horizon line!”  We would start off painting summer because that was easy and filled with blues and greens.  Then fall with its yellows and reds and leaves falling.  Then we would paint winter and the colors are dark and the trees have no leaves and everything is dead.  And this is where many teachers stop when they teach the seasons.  





But we would stop at spring; we would stop with cherry blossoms.

I told them that the painting was inspired by the twining of Amanda Bennett’s story and my own.  She suffered so, as did her husband with no time to say goodbye.  We had the better death at home with friends and family.  My husband and I spoke all night the night before he died back when I thought terminal restlessness was just a Tom Hanks film.

Then I glanced over to Alex and said, “I had been asked say something moving in two minutes and I don’t know if I did, but my husband was able to.  He said goodbye to his sons by performing a puppet show in hospice.  This past fall we marched in the Million Puppet March in Washington DC in Support of PBS.  In support of all that PBS does to educate us.  We carried signs with pictures of my husband in hospice and told folks all about Honoring Choices in Minnesota.”   I told them that is what this is all about.  We can say goodbye with puppets and remember the promise of cherry blossoms.

I painted for the rest of the day with people coming over often to chat. One was Amy.  We hugged and laughed because we were wearing almost identical outfits!  As she said we were sisters from another mother.

Soon we broke into sessions.  I went to the Interfaith Workgroup on Spirituality.  They are looking for suggestions on how to move things forward.  I volunteered the power of the twitterverse to help the cause.  So feel free to join the conversation!

That supper, with no prompting from me, my seven-year-old son Isaac told me he wants the Star Wars Imperial March to play at his funeral. He also wants a graveside service.

I responded, “I want to donate my body to science and then that is usually followed by cremation. So I won’t have a grave.”  His eyebrows rose and he said, "You don't want a tombstone?" I responded, "Nope." He replied "Well, there will be no crayon rubbings of your tombstone then." And proceeded to eat his macaroni.

Now, was that so hard?  

A March of Happiness:Million Puppet March

I have attended quite a few marches in DC.  There are often yelling, chanting people delivering soapbox speeches.  People press one upon the other, trying to stay upon the sidewalk and not spill out into the street.  There are occasional arrests and very few children.

The Million Puppet March was a very different kind of March.  People were joyous to be marching, even on blustery fall day.  Children swarmed to and fro within the milling crowd.  We met in Lincoln Park at 10 am.  Our puppet troupe consisted of a lovely neighbor named Renee Dunham (who responded to my posting about the March in The Chevy Chase List Serve),



Megan Mitchell a local high school student and member of The Walking Gallery,


life coach Lauree Ostrofsky  and my six year old son Isaac.



We arrived with two suitcases filled with puppets and several other attendees joined our troupe on the spot. 

Ted Eytan came with his camera to document the amazing visual opportunity and capture the joy and color of the event.  We marched all the way from Lincoln Park to the capitol lawn.  At most Marches people are content to swarm upon the sidewalk.  This march took to the street with marching drums and puppets over 10 feet tall.  Every once in a while folks would burst into song or chant a few times, but for the most part people talked about memories of Sesame Street and the importance of Public Broadcasting.

Several reporters were interviewing the crowd in a very unbiased way, but one gentleman interviewing me seemed angered by the event.  I explained the wonderful health education that PBS has provided.  I showed him information about the Honoring Choices documentary series in Minnesota.  PBS teamed with the local hospitals and due in part to that work, Gunderson Lutheran Hospital has one of highest rates of completed advance directives in the nation.   The reporter walked away.

When we arrived on the capitol lawn, songs were sung and our organizers said a few remarks.  Then children were invited to the front speak about puppets and public broadcasting.  At the end of the event Ted and I practiced our Tedx speech that we will deliver in Detroit on Thursday.

As we practiced, organizer Michael Bellavia walked by with his puppet asking if I was Regina.  I jumped up and hugged him saying thank you for all he had done.  I enquired about fundraising and learned that they still needed more funds to cover the permitting costs.  So I am posting the link once again incase any of you would like to support these brave folks who traveled across the nation in support of puppets and public broadcasting.

Sacred Media

I met @PraticalWisdom on twitter in the fall of 2010.  Back then twitter the feed listed the @ name clearly but not the person’s real name.  I have always been known on Twitter under the rather unimaginative name of @ReginaHolliday, but Lisa Fields chose @PracticalWisdom.  So for over a year, I pictured @PracticalWisdom as a rather down-to-earth oracle rather than a person.  She would appear in various discussions and threads always connecting folks and offering advice on a multitude of subjects.

In the fall of 2011, Lisa had dinner with another Walking Gallery Member Colin Hung.  He told her all about his Gallery experience. Then I asked Lisa to email me and consider joining the gallery herself.  Soon after she joined SpeakerLink.org and expressed to me her interest in speaking as well as helping other patient speakers perfect their power-point presentations.

In the spring of 2012, Lisa sent me her jacket and I painted, “Sacred Media.”

This painting is framed as stained glass window embedded into a stone wall.  The theme in this piece is the color blue.  If you look at my art, you will very quickly discover that I consider blue a sacred color; in part, that is because the chapel I worshiped in as a child was painted with the most peaceful blue.  But much of the blue in this painting is the blue of twitter. 

Lisa and I have much in common.  For over a decade we were both married.  My marriage ended in death hers in divorce, but after our losses we both found companionship and loving friends due to a blue bird of friendship.  Lisa also spent many years involved in pastoral care with her former husband, now she still counsels others and provides great comfort in only 140 characters.  So within this painting the twitter bird appears again and again uniting this composition. 

Another through element is the tree.  Whether this is the tree of knowledge, the tree of eternal life or the world tree, it stands proud and tall and woven within its branches is a picture narrative of the elements of Lisa’s life.

In the lower part of the painting, a young provider counsels a palliative patient in the care setting. This represents the tweet chats that Lisa often hosts or takes part in that focus on palliative and end of life care.

In the middle area of the design, a young man sits within a tree smoking a cigarette.  He represents the many individuals that Lisa helped in the addiction and mental health field as a counselor.   

Beside the young man a woman is turned from the viewer and is completing a breast exam.  Lisa is frequent participant in #BCSM (Breast Cancer Social Media) chat often connecting the voices within that community to other communities, thereby spreading their wisdom. 

At the apex of the painting, a blonde woman stands above the tree. In her hands she hold a final two blue birds.  She is completely nude, or as we say in the in the world of social media she is ‘transparent”.  She looks upon the viewer with an intense gaze, asking us to look upon ourselves and communicate clearly.   

Lisa wore this jacket in DC on June 4^th all day at HealthCampDC and at the gathering of The Walking Gallery that evening.  She was an amazing participant.  At around 7:00 pm after 11 hours focusing on healthcare and social media, a lovely photographer with the Washington Post took a picture of many us lined up in our Gallery jackets.  Lisa stands within that row with her head bowed and shoulders slumped.  She tweeted at me later her dismay, saying she now knew why her mother said ‘stand up straight’.  

I love Lisa in that picture because of her stature. 

There are many of us who have been bowed by this work.  Like the tree on Lisa’s jacket we bend, we sway, but we do not break.  And what may seem to some to be a head dropped in fatigue maybe instead by a soul communing with God. 

So Lisa in her jacket appeared in The Washington Post and became an example of sacred media once again.

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. 

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.

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. 

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 café-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.

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.

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.

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…”