Time to Spin

Today is January 7 and this day is known as Distaff day.  Other than my friend Julia Cooper, I doubt very many of you will celebrate this day in its traditional way.  Today is the day we leave the Christmas holiday behind us and pick up our work tasks again.

Imagine a world where people carry devices wherever they go.  Whether you are a pauper or princess, this is a world where people rarely go out socially without their technology close at hand.   The line between work and personal life is hopelessly blurred. You cannot even take your kids to the park without pulling out your device and following the most recent thread.  Does this sound like our wired society?

I thought so last January when I first wrote about Distaff Day. Well, I am actually describing the world of the average woman in the Middle Ages.  Back then every woman, regardless of age or rank, was expected to fill their day with meaningful work.  So each woman would carry their spindle and distaff  (also called a rock) with them to social occasions.  Sometimes they would even gather for this purpose and it was called “a rocking” I guess the modern equivalent of that would be a “tweet-up.” It was a constant frenzy of thread creation. 

But there were times that it was considered appropriate to put down the spindle and focus on friends, family and spirituality.  People would “unplug” (Or would that be unlace?) during the 12 days of Christmas. I see a pronounced absence of social media voices during the holidays.  After the “Engage in Grace” blogroll of late November our thought leaders in medicine pause and focus their thoughts on home and family.  During the holidays we set down our “spindles.”

Last Distaff Day I was working on a large painting for the great folks at Eliza.  AlexDrane had asked me to paint my vision of the company and its mission.  I painted a large triptych entitled “Eliza.”

In this painting the sky is blue and the ground consists of an overwhelming mass of green cables and threads.  Blue and Green are the corporate colors of health care and they provide the foundation to the piece.  Like the ever-changing technology of our times, this foundation seems to writhe and pulse; almost washing away the characters within the painting.

To the far left, I painted a mother at her spinning wheel.  Here thread leaves the distaff and flows to a large loom at the center of the painting.  The large wooden loom is braced above with a vintage phone receiver.  To the lower left a telephone switchboard operator moves cable after cable connecting calls.  This represents the work Eliza does to connect with patients on the telephone. 

A row of patients and their caregivers stand within the flowing cables.  They stand as though on the assembly line, they are placing their needed medication in pillboxes.  The system at Eliza is trying to help them remember this process in health.

 

To the right and left of the large loom stand two versions of Eliza Doolittle from “My Fair Lady.”  This character is the namesake of the company.  The Eliza on the left is a beautiful maiden holding the coiled phone line in her hands as though spinning at the distaff.  The Eliza on the right is the crone. Her face is haggard and her basket empty.  At the center of the loom a mother figure weaves.  A mother is supposed to run the loom and control the weft and warp of time and technology.  So deeply meshed within this painting is the role of women in care giving that the symbols of this role take up 80% of the painting.

To the lower right a male technician hauls a circuit board across the frame.  Upon its circuits the word Eliza is written in Morse code.   

Beside him and behind him a film reel unspools representing the media Eliza creates to help patient populations. The word Eliza is also written in a swirling font among the cables in the lower center panel.  In this area of the painting, children stare upon the viewer.  

The youngest holds out a smart phone with the word "Eliza." 

These are children are the future beneficiaries of the great work of this company.

In the center behind the loom, the mother figure is time and space itself.  This was not always the case.  In my original attempt at completing this masterpiece, I painted Alex Drane into the composition.   I knew that she was a strong mother in her own family but she was also the public face of Eliza.  She taught me the importance of their work.  She showed me their data sets and thoughtful campaigns to help people attain better health outcomes.

When Alex saw my center panel she felt that I definitely had been inspired by Distaff day.  That would be pronounced Dis-the–Staff.  She was troubled that she took such a prominent place as Eliza Corporation was a team environment.  So I did something a rarely do, I repainted the center figure.

This time I painted Demeter as a mother goddess.  Painting over your own work can be a painful thing, but I said good-bye to Alex.  The new figure was fuller of face with a quiet countenance.  Her hair was the color of straw and bedecked with grains of wheat.  I finished the painting and mailed it to Eliza in May of 2013.

In June at Health Datapalooza, Alex took me quietly aside and told me the she still had trouble with the painting.  She thought the Goddess looked too much like her.  I think I blinked then.  The Goddess was a good 50 pounds heavier than Alex with a completely different nose.       

Alex asked if I would fly to Boston and fix the painting one last time.  On August 2, 2013 I did exactly that.  I walked into the offices of Eliza.  I began to paint while my face felt flushed like that of a child asked to redo a math problem in front of the entire class.  Throughout the day people would stop and talk to me and their energy and warmth came to be the center of the painting. 

The lady in black is crowned with the time the staff of Eliza gave me.  The sun and all the planets of our solar system make her face.  Her hair swirls into a symbolic yin and yang and the mythos of the painting changes.  Both male and female must be in balance to do great work in care giving.  Both leaders and staff must feel part of the whole.

I am glad I was able to fly to Boston and complete the painting.  I was able to present it before Alex and the staff and acknowledge their concerns.  I told them Alex was the public face of Eliza.  So she greatly inspired the piece.  But nothing should stop them from being part of the worldwide conversation in health care.  They should blog, facebook and tweet.  They should become a public face of this amazing organization.  

They should join the Walking Gallery and tell the world their stories.

Last week Suzanne Carter, data analyst from Eliza, did exactly that.  Her jacket addresses the need for affordable hearing aids and is entitled: “Analyzing Whispers.”  

Thank you Suzanne, Alex and all the staff of Eliza for being part of my celebration of Distaff Day.   I look forward to seeing the new threads we create in 2014.

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?  

Wind of Change

I met Amy Cueva almost three years ago. I was presenting my first speech at a health care conference in Washington, DC. MY friend Ted Eytan, MD asked me to join his panel presenting a patient view in medical care. Another friend, Cindy Throop, kindly helped me with the power point, as I had never created one before. During my short speech I poured out my soul before a room containing more empty chairs than filled ones.

Amy cried that day.

She walked over and embraced me. Then she told me that she was working at the intersection of health and design. Over the years she kept in contact via Twitter and occasionally I would participate in a in a conference call with her and her team at MadPow. Recently, she asked me to attend her annual conference: Health Experience Design 2012 or #HXDconf as it was known on twitter. I would paint and speak.

This is the painting I created yesterday "Wind of Change." It was inspired by several speakers who presented in Grand Ballroom A.

Typically, when I paint at a conference I will either be in the back of the room by the exit door next to the camera crew or towards the front of the room by the stage. #HXDconf was not the typical conference.

Apparently, the hosting hotel had just installed new carpet and did not want me to paint at all. The MadPow team fought for a month for my inclusion. They reached a compromise by placing me on tile floor covered with protective plastic approximately 200 feet away from the conference space. I looked at the placement and said it would not work, as I would not be able to hear the speakers. The hotel staff strung cable along the hall to connect me to the audio feed.

That was the best they could do and I began to paint.

Amy started off the day with a strong welcome explaining her drive to create a better health experience for us all. She then made a statement that defined this painting: “Technology and design should be the wind at your back, not your face."

I then began painting Amy using the elongated form often reserved for depicting the divine. She stands firm with a determined face, the wind at her back and a banner in her hand depicting her quote about technology. In the background the sky roils with dark clouds driven by the winds of change. She stands tall in the middle of the path of technology. Her shadow looms long and exists beyond the page, for that which is done today shall repercussions for many tomorrows. 

To her left is the next speaker Robyn O'Brien who told us about Allergykids and the Unhealthy Truth. Robyn was just a regular mom and food analyst until her child became allergic to certain foods. Now she is a righteous warrior in the battle against unhealthy foods containing pesticides and growth hormones. She is looking for other advocates who will join her team. In one hand she holds an apple representing the healthy food we need to eat. This apple also represents the knowledge that we must attain about what exactly has been done to our food supply. Her other hand reaches out to Amy, as Robyn would like to meet others also determined to create change.

To Amy's right is Tim Kieschsnick whose speech was entitled Data are People too- Visualizing the new Health Care Reform Consumer. He focused on the outreach that Kaiser Permanente is doing to provide care for American's previously uninsured. He asked for a show of hands of the uninsured attendees.  He was pointing out that the uninsured in the room may be sitting next to you, or they may be you. I depicted Tim as the patient in the room. His back is to the viewer, his gown gapes. He is anonymous, except for the mirror in his hand that allows us a glimpse at the reality of the uninsured.

To Tim's right stands Alex Drane, as sexy as her speech: Talk Health to me Baby. She pointed out that health care spends relatively no money in marketing itself to consumers, while tobacco and soda spend quite a bit. When health care does market itself, it is usually with un-sexy, vanilla, boilerplate imagery. So Alex stands provocatively within this painting baring some inner thigh, wearing paten leather boots that reach her kneecaps. In one hand she holds a plate with a single marshmallow, referencing the marshmallow experiment on self-restraint that she referenced in her speech. In the other hand, she holds a magnifying glass up towards the patient, representing all the magnifiers that are affecting the patient's health.   

What does art have to do with medicine?

View more presentations from Regina Holliday

To the far left of the painting I stand in my Little Miss a-Type personality Walking Gallery jacket. My hair whips behind me and my arms are upraised. I am asking you to join me. Become a paintbrush warrior. As Don Fluckinger described me on twitter, "preaching HIT fire and brimstone."  As my speech continues my volume increases and makes its way into ballroom B where some attendees hear enough to want to leave that session and come to mine. I end with a call to action: invite patients to conferences and thereby artists and poets as well. Embrace true disruption of the model of medicine that does not include the patient voice and occupy healthcare.

Finally to the far right, Todd Park marches and beats the HIT drum. His speech received a standing ovation: Unleashing The Power of Open Data and Innovation to Improve Health. I was told he jumped on the stage, he vibrated with energy and spoke of data liberation with the joy of a true believer. He then closed his speech with the story of his daughter's open-heart surgery.

That is the story of Wind of Change. And in case you ever wondered if God has a sense of humor, the wind of a cold Boston day blew at me throughout creating this entire composition. I was painting next to a building exit.  At one point the wind was so harsh that it broke the pneumatic hinge on the outer door. In addition to being very cold, I would have to hold canvas in place each time the door was opened or it would be blown off the easel.

As the conference day ended, I continued painting far away from the milling crowd.  A few braves souls crossed to long expanse and met me at the easel and we spoke of art and design. Juhan Sonin was the most apoplectic in his dismay.  "This was a design conference," he said. "How could a design conference accept this poor placement of an artist by a windy exit." I commiserated with him and said, it is okay it reminds me how it feels to be a patient: alone and ostracized with the wind in my face. I paint beauty from tragedy and grow stronger through adversity.

I am buoyed, and not bowed, by the winds of change.
            

Engage With Grace

I don’t know about you, but I love those promotional items I pick up at conferences.  I think it is really cool that my five-year old has a Health 2.0 water bottle and that my 13 year-old has a Cerner backpack.  I carry my Disposable Film Festival messenger back on every trip and I wear my Practice Fusion t-shirt all over DC.

Yes, I love swag. 

It gives me little happy chills to wash my brushes in my Microsoft Healthvault water bottle and my  favorite re-useable shopping bag is from Kaiser Permanente. I know companies give us these things to remind us of their products as we live our daily life.  Perhaps, I love them because I spent 16 years working in retail. I know the careful consideration that businesses take in choosing which items they shall adorn with their logo or message.   And I rejoice in the wonderful conversations I have with people about healthcare just because of all the logos and conference detritus in my life.  It is sort of like a wearing a sports logo, but you are self-identifying as a fan in a far more obscure genre.

My favorite piece of promotional merchandise is my wallet.  I have carried it with me everywhere for two years and five months.  It is very special.

The nice folks at Newman’s Funeral Home in Grantsville, Maryland gave it to me after Fred’s funeral.  Did you know Funeral homes had swag?  I didn’t know.  I didn’t know a lot about the process of dying.  It is not something we talk about very much in our daily life.

That is a shame. 

This month is Thanksgiving and I will pull out my wallet and buy all the fixings for a Thanksgiving meal.  And I will be standing at checkout thinking of end of life care.  I will roll my cart down busy isles whilst considering the wishes of my loved ones.  This is very special month for this is the time we congregate with family and have a chance to Engage with Grace.

I have written before about the amazing Alex Drane.  She founded a company called Eliza.  In the summer of 2008, Matthew Holt of Health 2.0 and Alex came up with the idea for Engage with Grace after discussing the fact that most people do not share their end-of life wishes with their family.  The Engage with Grace project revolves around the One Slide.  This is slide that can be included in a slide set and has five questions about end of life care. 

These are the questions:

1 On a scale of 1 to 5, where do you fall on this continuum?

1= let me die without intervention 2    3   4   5= don’t give up on me no matter what, try any proven and unproven intervention possible

2. If there were a choice, would you prefer to die... at home or in a hospital?

3. Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?

4. Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?

5.  Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive?

I asked Rosemary Gibson, author of The Treatment Trap and an authority on palliative care policy, “How do we prepare to ask such questions?”  She told me such questions were part of the reason she wrote her book The Treatment Trap.  She encourages readers to ask questions about potential treatment options early in their medical care so they are empowered by this experience to ask the big questions later.  So many people when they are diagnosed with a terminal disease find themselves on a scary rollercoaster of treatments not of their choosing.     

She recommends starting with simple questions to gauge our awareness of self and build toward these harder ones.  I know that a life of research and asking questions of doctors helped me to help Fred through his cancer journey.  The research I did as a mother led me to question the need for Pitocin in a natural delivery.   It led me to question the need for a tonsillectomy if both parents genetically had large tonsils.  These simple preparatory questions helped me be brave for the very hard questions to come.  I am advocating that you begin to ask questions about your care, that you begin to take ownership of your life and of your death.

And why not start this Thanksgiving?

Why not start to ask these questions surrounded by love and light and family?  Please do not wait to ask these questions as Fred and I did.  We filled out Fred’s Advance Directive at the first hospital.  We did it all alone.  Tears ran down my face as I read question after question to my newly diagnosed husband.  We had never even spoke of this in theory; we had never practiced. 

There was no one to help us.

Weeks later before going into hospice, we had to answer the questions again.  Again I sat alone with my husband, his eyes as trusting as a child, while I explained the DNR forms that must be signed before transport.   I stood steadfast at side supporting his decisions and I was thankful the family united around him with the goal of a good and peaceful death.
  

I did not know at the time that it could be so much worse, that this process can be fraught with more despair and anguish.  I did not know it tears some families apart when they fight about their loved ones final wishes.  I did not know some wives and husbands disagree with mothers and fathers.  I did know that providers could ignore an advance directive if one the immediate family members fight against it.

And this is why you need to talk about this on Thanksgiving.  You need to talk about this when every family member is there, so everyone is aware of your intent and decision.  So every one can support your choice when the time comes.   

I carry a funeral home wallet because the folks at Newman’s were kind.  They greeted my Father-in-law Fred Sr. and I, with soft words and acknowledged our grief and confusion.  They did not leave us alone to pick out a casket by ourselves.  They helped us fill out paper work and answered every question with dignity and respect.  

I carry this wallet with me, and death becomes part of life.  And every once in a while someone remarks upon my wallet and I can ask, “Have you heard of Engage with Grace?”

The Angel Eliza: Alex Drane's Jacket

When I was in college in 1992, I was barely getting by.  I pounded the payment turning in application after application, yet I could not find a job.  And after selling all the plasma I was physically and legally able to sell, I got the job of last resort. 

I went to work as a telemarketer. 

I lasted one week.  I did not give up because I was not good at selling, on the contrary, I can sell just about anything.  But I was selling roadside assistance to elderly shut-ins who no longer drove.  Oh, there were the folks who would slam down the receiver uttering a few choice curse words.  That was troubling, but I could not handle the guilt of selling unnecessary policies to lonely seniors who just wanted someone to talk to.  They sounded so sad when I would close the sale and say goodbye.

I have never forgotten that experience, and I thought of it often as I designed Alex Drane’s Jacket: The Angel Eliza.  I painted this for Alex Drane because she is wonderful and kind.  She is one of those truly free spirits you rarely meet in a lifetime.  On top of running Eliza, which uses internet tools and the humble telephone to communicate with patients, she also helped create Engage with Grace and Seduce Health.

When I was a little girl, I would often stay at my Aunt Hilda’s house.  In my room was a little print on the wall.  My Aunt Hilda called it the Guardian Angel.  No one knows the name of the artist but the piece is called “Heilige Schutzenge.”  It always comforted me.  When I thought of the company Eliza, I thought about that picture.

This is the angel Eliza.  Her wings are phone receivers and she loosely holds the coils of the receiver as those coils connect her to the patient.  This angel stares at the viewer inviting them to take part in the solution.  Eliza seems sacred as she floats above the scene and her head is framed with a cloudy halo of binary code.

Below the Angel Eliza, two figures sit on a dilapidated bridge.  To the left side of the picture is a woman in a wheel chair.  Her face is concerned.  She is being reminded to take vital medications by the soothing tones of Eliza.  On the right side of the painting a small boy sits while giving himself and insulin injection.  He has been reminded as well.

This painting is peaceful and kind.  It shows that in the darkest moments of a life there are people looking out for you.  It shows the love of company and its founder.  This is not a company that uses loneliness to sell a product.  This is a company that uses every tool in their arsenal to help engage you in your health.  It is simply beautiful.