Sending the Card

Today is Valentine’s Day. 

As a child, I rather dreaded this day as would have to laboriously write 30 names of my fellow students on their cards.  I did however cherish the cards I received in return and still have some from 1983 in my memory box.   Cards can make you feel so very wanted and loved.

As I worked this year with my son Isaac on his Valentine’s cards for his third grade classmates, we discussed the many ways he could show his friends that he cared for them.  We also began a rather deep conversation about subtext.  We talked about the facing message that is obvious in a card but there is often a deeper subtle message underneath.

In February of 2013, I began a campaign on Change.org and on Twitter to encourage Hallmark to have a line of hospice cards.  The idea came out of a tweet chat that TedMed hosted that year.   Major media sites reported the campaign that spring.  Hallmark did consider my proposal and made their search engine a bit more user friendly for families looking for cards appropriate for hospice, but they did not create a hospice card.  A competitor, Greeting Card Universe, ended up making 24 different types of hospice cards in the spring of 2013.

When I attended HIMSS in Louisiana in March 2013, I brought materials to begin creating a large hospice card prototype for Hallmark.  So many people who attended the Patient Engagement Track signed the inset that would accompany the card. 

When The Walking Gallery gathered on June 2, 2013 in Washington, DC attendees from all over the nation signed the card insert we planed to give to Hallmark.

When I spoke at KUMC in Kansas City, Kansas in September 2013, I brought the card elements with me.  With help from the amazing folks at KUMC we assembled the card right there in Kansas only miles away from Hallmark Headquarters. 

My dear friend Jari Holland Buck, Walking Gallery Member and patient advocate took the over-sized card to the Hallmark Headquarters in September 2014.  We had tried to arrange an official hand-off in 2013 but were unsuccessful.

 At approximately 11:30 am Central time, September 5, 2014, Jari delivered the hospice card we assembled at KU Medical Center. Jari did try to find the “right” person to accept delivery of the card to no avail.  She hoped a spontaneous visit would net results.

Prior to arriving, Jari verified that they still lacked an identified presence in the hospice cards. Their website stated the following, "These cards are available within several different lines in any store that carries Hallmark products.  But because they haven't typically been displayed together, and because not every store offering Hallmark products carries every card we produce, these cards can be difficult to find. Late last year we began offering new displays to group these cards in a "tough times" zone with signs to help shoppers find them.  These new sections will be appearing in many Hallmark Gold Crown stores throughout 2013."

The front desk security guard asked Jari to leave the card as she was making an “unscheduled delivery.” Jari refused, saying that there was too much pain and too many people behind this gesture to simply pass this work to Hallmark anonymously.

 Jari suggested several possible recipients to the security guard. The security guard responded that she didn’t have the names or roles of department employees. Jari suggested that Media Relations might be a good direction.

Linda Odell, (whom responded to my initial request via several reporters in 2013) Manager of Media Relations, personally accepted delivery of the card.

This is what Jari told Ms. Odell:

“My name is Jari Holland Buck. I am a Patient Advocate and member of Regina Holliday’s Walking Gallery. I am here today on behalf of all hospice patients, past, present and future, as well as the family members who care about and the caregivers who care for them. Facing death is one of the most difficult challenges any of us will face, whether it is ours or that of someone else.

Hallmark has helped us with our inability to express the right message and continues to do so by offering cards that are “appropriate” for those in hospice. When I walk into a Hallmark store to purchase a hospice card, this is not a fun trip. I do not wish to search through the racks or be escorted by an employee who may or may not know where to source the appropriate card on the racks. This is hard enough for me to acknowledge and I just want to get in and get out.  Hallmark has neither clustered these cards in a meaningful way in the stores nor offered a line specifically dedicated to this painful experience.

On behalf of Regina Holliday, members of the Patient Advocacy Walking Gallery, our local community and caregivers throughout the US, please accept “our” card asking you to dedicate your time and attention to this issue.”

Ms. Odell responded that she was working on correspondence with www.caringbridge.org/ for a co-branded line of cards.  She was working on this at the very moment she was contacted by the security guard and thought the timing was fortuitous. Jari asked if Ms. Odell if she was aware of my petition and she said, “Yes. Regina was the one who initiated the change.org petition for hospice cards.”

Ms. Odell stated that hospice cards were still not grouped within Hallmark stores and was aware that there had been “issues” with shelf talkers / inserts that identified their presence within the racks.

Jari told Ms. Odell that she was serving as an advocate for a hospice patient. Jari knew, from personal experience, what it was like to visit a Hallmark store seeking these cards. Jari explained how awkward many of her client’s friends and family members felt expressing themselves to the dying patient.

Ms. Odell acknowledged that the point “This is not a happy trip to the card store and I am not here to shop or laugh,” was a valid one and one not previously considered to her knowledge.

She also said she knew 15 people who needed to see the card. They were spread widely throughout the organization. Ms. Odell then asked for a copy of Jari’s explanation of the card, which Jari willingly provided.

Today is Valentine’s Day and Jari sent me a card.  I don’t get many cards on Valentines day and I thank Jari for being such a great friend.  Her card encouraged me to write this post today and report on the Hospice Card saga of the past 2 years.

Which encouraged me to think about subtext.

I realized that I began demanding cards for our loved ones who are dying in February the month of Valentine’s Day.

I am a Widow. This is a hard month for me.  My thoughts turn to love and loss.  My request to Hallmark is that same as it was two years ago.  Help make a time that is so very sad be filled with love.  I don’t want a memory box just filled with Valentines.  I want to see some hospice cards.

So I write this post today and will tag it with #HealthPolicyValentines.  

Be the change you wish to see.  Never forget you can change health policy with a simple greeting card. 

Hospice cards: Greeting Card Universe Steps Up

I wanted to post an update in the continuing saga of my request for Hallmark to create hospice cards.   At this point the petition has over 4,000 signatureson Change.org.  While Hallmark has yet to create a card to fill this gap, Greeting Card Universe has created 24 hospice cards for friends and family of the hospice patient to use.  I was overjoyed to hear this!  This is another step closer to getting such cards in stores.  You order Greeting Card Universe Cards online, but you can pick them up in your local Target store.  Isn’t that wonderful?  Mindy Rosso-Gaemi, community manager at Greeting Card Universe heard our original plea and decided to do something about it.  She created the hospice category and several fields of card types.  She then asked her artists to use their talent and life experience to create some cards.  These lovely cards are the result.

I loved the heart-felt truth and honesty of this card:

http://www.greetingcarduniverse.com/occasions/goodbyefarewell/hospiceendoflifefinalgoodbye/religious/christian-saying-goodbye-end-of-1072816

And though it may have not been the intent of the author, this one with “You Are Not Alone” made me chuckle and would warm the heart of any Doctor Who fan.  So my friends Michael, Rebecca and Will if you ever enter hospice I am totally sending you this card!

Thank you Mindy and all the artists at Greeting Card Universe for making the end of life a little brighter.

Full press release below:

Greeting Card Universe Offers Greeting Cards for Final “Good-Bye” to Hospice Patients & “Thanks” to Hospice Nurses

San Francisco, CA – (May  1, 2013) – In celebration and support of National Nurses Day on May 6th, Greeting Card Universe, the world’s largest greeting card store, announces its new collection of hard to find and uncommon cards for patients in Hospice Care – affording loved ones the words and sentiments to say a final “good-bye”.

“Together with regular nursing duties, hospice nurses provide palliative care to terminally ill patients,” says Mindy Rosso-Gaemi, Community Manager at Greeting Card Universe. “A hospice nurse not only helps a dying patient going through a distressing  and often times frightening period, but shows the same level of caring and compassion in comforting the patient’s family and giving emotional and spiritual support when it’s needed most.  A special ‘thank you’ card for a nurse or caregiver is a wonderful way to express gratitude to these special individuals”.  Greeting Card Universe has a popular collection of over 1,000 Nurses Day cards. 

Hospice care was first established in the 1970s. At the time, cancer patients made up the greatest number of recipients. Today, thanks to advances in medicine, less than 50 percent of hospice admissions are due to cancer. An estimated 1.65 million patients receive hospice care in the United States each year.

 “Hospice patients need to hear from family and friends,” says Rosso-Gaemi. “They need to know they’re loved and won’t be forgotten, and that it’s okay to let go.  For most people coping with a dying loved one is too difficult. They fear of saying the wrong thing and are at a loss for words so say nothing at all at a time when any words would mean so much.  Not taking the opportunity to connect is a regret they’ll likely carry for the rest of their lives.”

Greeting Card Universe offers sympathetically designed Hospice Good-bye / End of Life cards created especially to give to hospice patients, providing a starting place for a loving, therapeutic conversation or a final good-bye.  The new collection of cards was inspired by the plea of Regina Holliday, artist, widow and healthcare advocate, who publically petitioned Hallmark to create a collection of Hospice End of Life greeting cards. 

 “Where Hallmark stumbled, Greeting Card Universe has risen to the occasion offering a new collection of cards to serve this niche market,“ shares Rosso-Gaemi.   “It’s not always about what’s politically correct or the size of the market, but instead if there’s a real need for expression.  Once shoppers discover the variety of cards we offer, they’ll never shop anywhere else. ”

Greeting Card Universe put the request for hospice cards out to their community of 5,900 artists.  Within two weeks the new collection emerged with over two dozen cards and more to come.  Many of these artists drew upon emotions and experiences of hospice care and their own lost loved ones.  The creations carry their tender words of thanks, good-bye and prayer for others to express when the words don’t come easily.

Ordering online from Greeting Card Universe’s collection is easy and convenient.  An added convenience for last minute shoppers, cards can be ordered online and picked up— usually within one hour—from most Target stores across the country. 

Greeting Card Universe’s traditional and niche offerings of over 589,000 cards gives nod to the importance of choice and personalization in today’s marketplace and stays true to its tagline “any card imaginable.” 

Explore more uncommon holidays and occasions on the Greeting Card Universe blog.   Mindy Rosso-Gaemi is available for guest blogs, radio and TV interviews on this topic and other uncommon occasions and holidays.

About Greeting Card Universe
Greeting Card Universe (www.greetingcarduniverse.com) is a division of BigDates Solutions, a private company that provides consumers with unique, personalized services for any holiday or occasion. Greeting Card Universe is the world's largest paper greeting card store, offering an unlimited selection of custom greeting cards, birthday greeting cards, photo cards, invitations, and note cards. BigDates Solutions is the leading provider of Online Reminder Service Solutions, powering gift-reminder services, including 1800Flowers.com and FTD.com. The company is also the owner of Birthday Calendar, a Facebook application with over 42 million installs.

Contact:  Mindy Rosso-Gaemi Mindy.Rosso@bigdates.com                                                                                                            

Hallmark is listening

Today has been an amazing day. The petition for Hallmark to create hospice cards has now grown past 1,500 signatures.

Hallmark has responded in two ways.  The Hallmark search engine now recognizes the word  “hospice” and the phrase “end of life.”  It will now send you to a card match that is as close as they could find to address the need.

They have also released a statement entitled:  “Viewpoints: Greeting Cards for People in Hospice Care.“ Screen shot below:

I wish to applaud these two steps in the right direction, but I want you to look closely at the first card they selected to address this issue;

“Cancer is tough, but you are tougher.”

This is the last thing a hospice patient with cancer wants to hear.  To often they have been told that this is a fight, cancer is a battle.  What is hospice? Losing? 

There are other lovely cards depicted in the statement, the “caring thoughts” are nice but I don’t think the last image of  “I hope you are taking care of yourself” is the best choice.   That makes it sound as though the patient could do something to rectify his/her situation if they just took better care.

We need Hallmark to take this issue of communication at end of life and hospice head on as they have for numerous topics like miscarriage as seen in this below screenshot.  This kind of clear messaging gives us permission to talk about life and death.

Hallmark also says they are rolling out a “tough times” selection of cards, but we need a clearer choice that that.  We need to see a “hospice” header right beside the “get well” and “thinking of you.”

We need HOSPICE cards.

Please sign the petition: Hallmark: Create Hospice Cards 

*********************************************************************************

Update:  One comment suggested we should offer some wording for Hallmark.  I welcome your suggestions in the comments here or on the petition itself.

What would I suggest?  First more than text some folks look at the picture.  I would love to see more faces and people on cards.  Pictures often say things we cannot says with words alone.



But what words for this?  No one said that would be easy...

There has never been a moment I loved you more,
than this moment,
in this time,
I wish we could finish this race together.
I wish I could take the baton from you,
I wish I could finish the relay in your place,

You have always been the light within my life,
and now that night is coming

Know that I will always love you.

2-24-13
Here are some ideas from @BeHereThen http://beherethen.wordpress.com/2013/02/24/end-of-life-issues-and-hospice-cards/ she gives them to folks who want to ideas of what they can say.  


  

Hallmark Please Create Hospice Cards

Do you keep all the cards you receive?  I do.  When I have spare time I even paste them into scrapbooks in all their lovely glory.  Behind each sentiment or floral cover, I cherish the words written by my friends.  I especially love the ones from my late husband with his signature and phrase. He ended each missive to me with the symbols: “Alpha, Omega. Infinity.”  Which means: you are my everything and I will love you forever. 

Those inside notes are priceless, but we should not forget the message that adorns each cover.  Do you peer at your cards and ponder the thoughts of the individual that made each purchase?  I do.  You see my mother rarely writes more than a sentence in every card she sends.  She does not think her words can say what she wishes to say.  So she ponders each card until she finds the perfect one that matches her love of her daughter.  She buys that one.  She mails that one.  I know to read the cover very carefully.

My mother depends on cards like the ones Hallmark makes to tell me how much she loves me. Due to the plethora of choice in the birthday card isle she always picks the perfect one.  And so it goes for my son’s births and other momentous events in my life.   But in the summer 2009 Hallmark failed my mother. 

Hallmark failed my husband too.  There are no hospice cards.  For two months after Fred was hospitalized we received a tower of “Get Well Soon” cards.  Fred rejoiced in each of these cards and they filled the hospital rooms, reminding Fred of all his friends who cared for him. 

When we went to hospice, the cards stopped.  We would get the occasional “Thinking of you” with the blank inside and few words from the sender.  Or God forbid, we would get a “Sympathy” card.   Fred raised his eyebrow with dark humor and would say: “I guess they don’t realize I am not dead yet.”

So recently, during a twitter chat sponsored by TEDMED, we were having a “Great Challenges” discussion about how to have an end of life conversation.  I suggested Hallmark needed to make hospice cards.  The group thought it an excellent idea, and I immediately set up a petition on change.org.

I encourage you to sign the petition here: Hallmark: Create Hospice Cards.

Soon people asked me why not start my own card line; after all I am an artist.  I responded, I was not doing this as business venture or as an attempt to have Hallmark use my work.  When I was asked how do we encourage people have “the conversation.”  I said the answer was Hallmark creating hospice cards.  They have an amazing reach into every corner of America.  If they create a card on this topic they will open up the conversation nationwide.

Some other people asked why a petition?  Why not ask Hallmark directly?  Well, I have been trying to do that for a year.  I called them directly and went through several layers of customer service and was told they would report the idea.  As I have several friends in the Kansas City area I also tried back channel contacts to no avail.  I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard.

I began tweeting about the petition and Hallmark did respond that they had appropriate choices in their Gold Crown Stores.

I used their internal search engine to find a hospice card and found nothing. Here is a screen shot of my search:

Soon after we had 50 people sign the petition and a Hallmark spokeswoman responded to us:

"We agree that a card can help people support loved ones going through difficult situations and their caregivers, and Hallmark has many choices for this need within several different card lines. If you're having trouble finding one, we suggest visiting a Hallmark Gold Crown store and asking a sales associate to help you find a card for someone in hospice care. Thank you for your caring hearts."

Linda Odell
Hallmark Newsroom
newsroom@hallmark.com

I don’t think this response really addresses our request.  I am well aware that Hallmark makes blank cards and all occasion cards.  We need cards about the end of a life just as much as we need cards at the beginning.  We need the script that Hallmark so lovingly provides in almost every other moment in a life.

We need a card that my mother can send, a card that will say all the important things.  For there are so many people like my mother in this world, so many people who can have this important conversation if Hallmark just leads the way. 

No one should die with an empty mailbox.  

The Final Lamaze Class

I took the classes with my husband. 

I leaned back into his warm torso.  I placed my hands upon my taunt belly and took a deep breath.  I felt the breath deep within, centering me, supporting me.  Then I let it go.  I was preparing for the time to come: birth, new life and the pain of it all.  I knew I could make through.  The instructor said concentrate on the breathing.

My body had changed so much in these many weeks.  My torso swelled, I was retaining water and could no longer see my ankle bones.  Walking was hard, breathing was hard, but through it all he stood beside me.  Soon the baby would come and I would get my body back. 

The Lamaze class ended and the gaggle of pregnant women and the cluster of husbands would mutter in an excited anticipatory way.  We were walking this path together and everyone could relate.  I read pamphlets and books that would cover every detail of this exciting adventure.  I was familiar with terms like contractions, dilated and active labor.  If I tired of reading, I could question our Lamaze instructor or my OBGYN.  I could ask my neighbors, friends and relatives about their birth experience.  I didn’t even have to ask, folks constantly would tell me their stories unsolicited.

We planned the natural birth of our first son.  Little Freddie came one month early so we missed the final Lamaze class, but we had learned enough.  When labor came Fred held my hand and we breathed together.  He looked deep into my eyes and we breathed through the pain. He smiled at me and said, “There see, it is not so hard, just take a deep breath and let it out.”

Ten years would pass us by.  Ten years of bills, work, scraped knees and sweet smiles.  Ten years of moments not appreciated until they have passed us by.  Through ten years of joy and sorrow, I never forgot the most important lesson: Concentrate on breathing.  Close your eyes and take a deep breath and let it out.

So many people want to talk about how we are born, but very few want to talk about how we die.  

Colleen Young is a community manager of Virtual Hospice of Canada.  I met her on Twitter and I think of her as a type of  Lamaze instructor for death.  I see her frequent caring comments on end of life and cancer care.  I know she is kind and informed.  She is far away, but she can offer so much support online.  When she said she would like to join the Walking Gallery I knew what I wanted to paint for her.

This is Colleen Young’s jacket: “Virtual Hospice.”

It is very hard to die in the world of modern medicine.  Patients are lost within a system based on curative models. Dying is considered failure rather than a natural conclusion in life.  When a family makes the decision to go into to hospice care, many people just stop talking with you.  There is even a steep drop off in cards.  What are people to do?  Gone is the endless stream of “Get Well Soon!” cards inscribed with that most empowering of notes, “You can beat this!”

There are no hospice cards.

The mailbox is often empty, both online and in life.  This is that quiet before the storm. The lonely solitude before the mailbox fills again with sympathy notes.  Into this utter darkness a cursor blinks.  It is Colleen and others like her answering end of life discussion group questions both metaphysic and mundane. Here is this space we can learn about active death and its symptoms just as easily as I once learned of active labor.

Within this painting is the Archangel WiFi.  The angel stands above my husband and me, for through this signal we can find someone to talk with us, someone who can explain this scary journey.  In my hands I hold the I-pad I needed at that time picking up the signal not available when my husband was ill.

Fred came home to die after three weeks in inpatient hospice.  I sat beside him as his hands fluttered and plucked at his gown and blanket. His body had changed so much in these many weeks.  His torso swelled, he was retaining water. I could no longer see his ankle bones.  Sitting up was hard, breathing was hard, but through it all he smiled at me. 

Soon it would be over. 

His hands were placed upon his taunt belly. He took a deep rattling breath.  I felt his breath deep within, centering me, supporting me.  Then I let him go.  He was preparing for the time to come: death, new life and the pain of it all.  I knew he could make through.

I smiled at him through my tears and heard his words from long ago, “There see, it is not so hard, just take a deep breath and let it out.”

The Last Puppet Show

Fiction and drama can teach us how to live, how to die and how to say good-bye. If you only 2 minutes to say goodbye to your little sons, what would you say? What would you do? When Fred needed to say good-bye to his sons he said it with puppets.

Do you ever think about who teaches you how to die? Who teaches you how to advocate for those you love? If you are young and live within a peaceful land, you may have rarely experienced death.

If reality has not taught us, then we can rely on fiction to do the job. Fred always loved to quote a line from Grand Canyon. “That’s part of your problem, you haven’t seen enough movies. All of life’s riddles are answered in the movies.” –Davis (Steve Martin) I couldn’t agree more.

I knew I was inspired to advocate for Fred in a hospital by watching performances by Shirley Maclaine and Sally Field. Who can forget Terms of Endearment or Steel Magnolias? Shirley’s character advises every e-patients as she cries out, ”It’s past ten. My daughter is in pain. I don’t understand why she has to have this pain. All she has to do is hold out until ten, and IT’S PAST TEN! My daughter is in pain, can’t you understand that! GIVE MY DAUGHTER THE SHOT.”

Did you know Fred Holliday, PhD. was a puppeteer?

When he was in school many years ago he was under the direction of the Puppet Master Gerald Snelson. Fred was part of traveling puppet show that would visit the local schools. Professor Snelson gave us what was one of our most treasured wedding gifts. He gave us the entire puppet set from his production of Brave Little Tailor. These are not small hand puppets. Think Jim Henson style puppets. They are amazing.

Those Puppets helped us through the years. When we were still newlyweds we persuaded a few friends to entertain the crowds at Grantsville Days festivities using these puppets in a show of our creation.

When our son Freddie was only 4 years old he was invited to a birthday of his good friend Jack Taylor. Two days before the party I received a distress call from Jack’s mother Theresa Taylor. Her party entertainer had cancelled. Could I help? I had to work at the toy store. I couldn’t help, but Fred could. Fred resurrected the puppets once again and off he went to present a one man puppet show before a room of active little boys. He was a hit.

For many years the puppets stayed in our closet as we worked many hours at many jobs. Then in spring of 2008, our family was at a crossroad. Fred was very tired and stressed. He felt he could no longer work long hours as an adjunct professor and video clerk. I was also very tired of working long hours away from him and the boys. So we came up with a plan. Two things could happen. In the fall of 2008, Fred could get a fulltime position at a University or we would take the puppets out and become a Birthday Party entertainment team. I would do the art projects with children and Fred would do puppet shows. In honor of this plan, I gave Fred a Frog puppet for his 38^th Birthday.

Fred was very proud of his new puppet. It sat upon the desk as a promise that life would get better. That summer the crossroad was reached and a future chosen. Fred was hired at American University. The Frog puppet was put away, as we went down a different path.

In the spring of 2009, Fred became very ill. While hospitalized he discussed with me how he would like to say good-bye to our boys. He would do it with puppets.

The Frog puppet would get only one performance. Fred had intended to do several puppet stories, but he was so sick in hospice and time ran out. So there is only one good-bye. Fred was an amazing puppeteer; he could make you believe his hand was a puppet. But I am glad he had this chance to use the Frog… to walk the other path for a few minutes. I am glad I can share with you and my boys his last performance.

Praying with Chuck Denham

I have told you before that as a child I worked at a local flea market in Sapulpa, Oklahoma. It was hard, dirty work, and it made me despise at a very young age any passing fad or craze. You see, every couple years after a fad died the over-abundance of certain products would crowd our stall and be almost impossible to sell. I, to this day, cannot stand termite shoes, Rubik’s cubes or feather earrings. But I truly disliked the many mugs, wall hangings, and decorative pillows emblazoned with the words to “Footprints in the Sand.” As a child, I found distasteful the hokey 1970's imagery of the beach sand and the disappearing footprints next to text written in mass-produced faux calligraphy. I am sure you are familiar with the tale. In it a man walks with God along a beach as the memories of his life pass him by. He notices in his darkest times there is only one set of footprints. He questions God, “Why did you leave me at my saddest moments?” God responds that when there was only one set of footprints that was when God carried him.

As a child, I really did not like “Footprints in the Sand.” In many of the pictures, it seemed like Jesus was carrying the dead- their arms limp and dangling. I did not want to look at this, and I did not want to be carried. Perhaps, as I was young, that memory of being carried, that loss of control or will was too fresh, so I could not accept this image. When I was a child, I spoke as a child; I understood as a child, I thought as a child…

Now, I am often asked "How do you do all that you do? How do you have the energy to balance teaching art, advocacy, blogging, giving speeches, and painting?" Well, I do not do walk alone. I pray, and God gives me the energy to sustain this life.

I remember one point when Fred was in the hospital, when all things within this life seemed so very dark. I remember praying for the peace of God, that it fill me and uplift me. And it did. I remember the moment. I was walking through the hospital cafeteria praying silently when I was filled with the love and light of God. My face was lit with an inner peace and even the hospital workers remarked upon my visage. The footprints artist had gotten it all wrong: when God carries you, you float.

Time has passed, and I no longer burn with this inner fire. I smolder. The journey is long, and I know the spirit is still within. I listen carefully and watch for “God moments.” My sister Esther and I call those moments of divine direction that happen with our lives “God moments.” I listen, I am open to direction, and I know the freedom of putting one’s life in God’s hands. So when I was invited to speak at 2010 CMS QualityNet Conference on December 2 in Baltimore, I said yes.

And that is how I met Chuck Denham.

Do you know Dr. Charles Denham? He is an amazing man. He worked with many cancer patients over the years as he has a background in oncology. He is founder and Chairman of TMIT (Texas Medical Institute of Technology), a non profit driving adoption of patient safety solutions and in this capacity he teamed up with CareFusion and AORN (Association of periOperative Registered Nurses) to produce “Chasing Zero” for the Discovery Channel.

“Chasing Zero” first aired in April of 2010. It stars Dennis Quaid in his new real-life role as a patient’s rights advocate. It is a very strong documentary about patient safety, and it made quite a splash in the world healthcare and patient advocacy. I had seen parts of it before meeting Chuck. I knew about the reason why Dennis Quaid was acting as a spokesman for patient safety as well. I had seen a repeat of his March 2009 appearance on Oprah while Fred was sick in the hospital. I heard him speak about the fateful overdose of his young twins due to a case of look-a-like bottles of blood thinner. The twins were mistakenly given a dose from a 10,000-unit bottle instead of a ten-unit bottle… and it happened twice. The twins did live, but this acted as a wake up call for Dennis, and he decided to help so others would not have to suffer as his family did. Dennis Quaid’s inclusion helped a strong documentary become a must-watch call to action.

Chuck asked me how I had gotten invited to CMS. I couldn’t tell him at that moment as I had forgotten the complete course of events, but now I see clearly.

I spoke before CMS, because on Sunday, May 3, 2009 I worked at Barstons Child’s Play- the toy store. I only worked at the toy store for three days when Fred was sick, and one of those days was May 3. Fifteen minutes before the store closed, Christine Kraft, a long time customer, came in, and I told her about Fred and kidney cancer, and she told me about Twitter, blogging, Health 2.0,and ePatient Dave. After Fred entered hospice, Christine put together a small Health 2.0 get together on May 27, 2009. That day I met Ted Eytan, MD. I would later find out he worked at Clinovations in DC and he would introduce me to Greg Fuller who would pitch patient participation at CMS on November 8. Greg would give them my name.

So on December 2, I spoke before CMS about Fred, patients’ rights, Stephen King, social media, special education, and Cub Scouts. I would tell them that putting the “H” in HIT requires remembering… Holliday, Fred; not the patient in room 6218. After I finished, a slow standing ovation spread through the room. Then Chuck Denham can over to speak with me about how he would like to spread this message far and wide. We spoke briefly, and when he learned we would both be at IHI on December 5, he asked me to film a small piece we could send to clinicians about why it is so very important that patients and caregivers have access to the electronic medical record.

Then Chuck did something very few people have ever done. He asked me how I was feeling, and he really listened to my answer.

I told him that when I paint or speak I go into that gray, sad place, and I walk in darkness for a while, but I come back renewed and refreshed. Chuck told me he has worked with many advocates, and he is concerned. He is concerned about our continual revisiting our deepest sadness, just so we can tell our tale to others. He worries about us and wants help us. So when we were filming on December 5, he asked what is it that helps me and inspires me and what supports me in my sorrow? I looked him in the eye, and I said God does.

So Dr. Charles Denham did something that no other doctor has ever done with me. In all the hospitals we stayed in, no doctor ever reached out and prayed with me.

In the many hospitals Fred stayed in, we were asked during admitting if we would like “a spiritual consultation.” This was asked with all the presence and compassion as the familiar phrase, “Do you want fries with that?” Even at hospice, when the bereavement coordinator spoke to me, she focused on my emotional support system. I told her that God sustains me. She rephrased it to me, “You mean that your belief system helps uphold you.” “No,” I said. “My belief system does not hold uphold me. God enters my soul and gives me peace.”

So, I sat there with Chuck and we prayed, and once again, I felt that wonderful peace of God.

CMS Presentation putting the H in HIT

View more presentations from Regina Holliday

Caregiving

I am very honored to post a guest post on this blog. This post was written by Alisa Gilbert.

What A Caregiver Taught Me About Human Connection

This past summer, my best friend lost her grandmother to old age. She died a few days before her ninety-third birthday. She had suffered a serious stroke the winter before, and had been shifted from her nursing home to hospice care later that spring.

A team of caregivers rotated through their shifts to care for her, to change her bedding and diapers, to feed her and make her as comfortable as possible, in what I used to think of as a simple, perhaps distant activity. Now I understand that much more can come of proper care-giving. Towards the end, after her grandmother had suffered a series of minor strokes, my friend described how they used a miniature vacuum to clear mucus from her mouth. I had never understood the emotional and physical toll that hospice care can have upon everyone involved—the staff, the patient, and the family members—until I had to comfort my friend through that tough half of the year.

Each day she returned from visiting her grandmother, I heard stories of one specific caregiver, Mary, who seemed to have taken her job and utterly transformed it into a lifelong calling. My friend's family had dealt with other caregivers that seemed less interested, a pair of which had quit in the final days because they decided they'd be better off looking for more work, so to hear the talk of Mary seemed encouraging despite the sadness of the situation.

One day that final month my friend asked me to visit her grandmother with her, so I steeled my nerves and went along. Besides I wanted to meet Mary. When we entered the room, we were greeted by a short, middle-aged woman with brown hair and tears in her eyes. She immediately hugged my friend, and then hugged me, after which I was introduced. Mary gave us an update on the day, all of its tiny particulars, and then my friend sat by her grandmother.

Mary gave us a moment alone, and when she returned, my friend left to use the restroom, so I was alone with Mary and my friend's sleeping grandmother. Mary made small talk with me for several minutes, and then I watched as she quietly reached over to my friend's grandmother and with a cloth gently wiped at the corner of her mouth.

I understand that this is not necessarily a unique gesture, but it still struck me for the power I felt in the room. I will never forget the way Mary sort of filled the room with her emotions that day. She struck me as the kind of person who had a deep, deep respect for both her patients and the family members of her patients. I'm not sure I have ever witnessed in someone a sympathy for others as strong as hers. In a way, her example, the way she acted in that little hospice room made me rethink how I consider those who are sick and those who take care of them, and the warm connections that can exist between them.

By-line:

This guest post is contributed by Alisa Gilbert, who writes on the topics of bachelors degree. She welcomes your comments at her email Id: alisagilbert599@gmail.com.

The Palliative Effect of Hair Styling

DSC_0238
Originally uploaded by health2con

I recently attended the Kaiser Permanente Executive Leadership Conference in Washington, DC. KP leaders gathered from all over the US for this event. At the opening of the meeting, KP showed a compilation of several videos to present my art advocacy mission supporting patient access to the medical record and the painting 73 Cents. It was a very powerful video, and after watching it, several members of the audience came up to talk to me about … my hair color.


I am one those people blessed to have been every hair color. I was born with a thick head of black hair. In a month or so, it fell out and came in blond. As I grew, my hair turned red and was that color for many years. By the age of 8, my hair was light brown. In my teens, my hair turned to a dark brown. With having such an amazing array of colors in my youth, I found I didn’t feel constrained to any one color, and in my twenties, I decided to lighten my hair back to the red of my childhood. When Fred grew ill, I was still the light red I had been for many years. After Fred died and I began my painting advocacy, I continued to keep my hair a light red. While working on 73 Cents, I spent days painting in the bright sun, which bleached my hair even lighter.

As the months of painting and grief progressed, I looked at my roots coming in completely gray. I now could truly say I had had every color of hair. But I am only 38 and do not plan to go gently in that gray night. So I went to a local salon for a color consultation. The nice stylists there told me I should go darker as it would look nicer with my complexion.

I submitted to their excellent advice. While I sat in the chair, I spoke to the stylist about hair and cancer. I told her about my husband’s 10-week hospitalization. After about six weeks, his hair had grown so long. We inquired about barber services. The hospital informed us there was a nice lady who performed haircuts for patients. She was very nice, but she did not have a lot of skill with cutting the hair of a bedridden patient. The entire experience turned into a farce that Fred, his folks, and I shared with friends for weeks to come.

After I shared my story with my hairdresser, she told me a tale of her own. She told me how she was the last one to shampoo and style her mom’s hair while her mother was in home hospice. It was a beautiful tale. It made me want to cry. I could almost see her hands gently washing her mother's hair. I could hear the happiness and sorrow she felt in her attempt to help her mother. Yes, she made her mother feel pretty; but this offered more than that. She touched her mother. She caressed her at a point in her life when she so need to be touched. She anointed her hair with oil…

So I am not bothered that the most asked question after viewing a video of 73 Cents was about my hair. I know often when we talk of hair, we might also be talking about beauty and death. Perhaps I have gone darker … because I have gone darker. Like Dark Willow or Dark Phoenix, I am not the same as when I started.


I brought two portfolios with me to the KP conference. One is light and cheery; it is my "before" album. For so many people ask if I was always an artist; I have always been an artist. I used to paint book characters and children's bedroom murals. The before portfolio shows the work I have done with children for the past eight years. The "after" portfolio is for the Medical Advocacy Mural Project. It is filled with images that often disturb but still retain hope. I like to create images that make you think, even if they tend to cause upset. This portfolio is darker, but there are still windows of light. This portfolio contains medical murals, jackets with patient images, and canvases I paint on-site at conferences.

Recently at Health 2.0 in San Francisco, I met a very beautiful woman named Diem Brown, and I painted her sadness. Diem was only 23 when she was diagnosed with ovarian cancer. She found herself adrift with no one to ask for help. Wedding and baby shower invitations were arriving in the mail while Diem was struggling to pay for chemotherapy wigs and to arrange drivers to her various medical appointments. She thought, “Why is this so hard? Why isn’t there a registry for cancer sufferers like those that exist for brides?” Due to Diem’s valiant effort such registry exists now, and it is called MedGift. Her story touched me so that I painted it into the Health 2.0 painting Bridging the Great Divide.

In this part of that painting, the bride is combined with the cancer patient. The best point in her life is combined with the worst. The sorrow is palpable. The cancer bride's hair is falling out, and strands are held in her hand. She is reaching for the apple of knowledge. In that apple is placed an eye. Knowledge without vision helps no one.


Weeks after I painted this, I was sent the wedding photos of Katie Kirkpatrick. If you have never seen these photos, I recommend you take a moment to view them. Katie was suffering from end stage cancer when she married her high school sweetheart. Under her lovely gown her limbs were swelling as her organs began to shut down. Just glancing at the photos made me cry, as I saw a body so similar to Fred’s before his death. She was dying and she was beautiful and … her hair was so pretty. She died five days after her wedding.


Thank you, Diem, for sharing your vision with us all. I am sure there are many people who will thank you for creating MedGift to help them when things seem their worst. Thank you, Katie, for sharing photos of your happiest day while so sick; we shall never forget you.

And thanks to the folks at the Kaiser Permantente who were brave enough to invite a cancer widow to an executive conference to remind us ...we are all patients in the end.