Trisha's Calling

In the week before the gallery gathered in Washington, DC on June 4, 2012, we walked online.  A suggestion bubbled up on the twitter feed that walkers change his or her avatar to their jacket image.  It was a great idea, as many of those who live far away cannot make it to the physical gathering.   I was a beautiful thing to watch then twitter screen fill with icon art as the gallery neared.  So many pictures, in so little space scrolled before my eyes during that time.  One avatar stood out in particular.  That was Trisha Torrey’s image; she left the world of the functional icon behind and entered the world of the sacred.   She laughed at me when I said her picture looked holy.  After all, I had painted the image; I knew exactly what it looked like.  Except, I did not know. You see, Trisha cropped off the red boarder of her jacket when she posted the image.  That changed the tones of the blues within the piece, and their intensity was less without the reflected glory of the red. Those blues had become silver and her jacket had become an Icon.

This is Trisha Torrey’s Jacket: “Every Patient’s Advocate.” 

This was the second time I painted Trisha and I doubt it will be the last.  She first appeared in all of her cheery goodness in the painting “Give Us Our DamnedData.”  She is an unusual member of the justice league of patient advocates.  Like many in this space she joined us due to a medical error.  But her case is rather unusual.  She did not have cancer.  She was misdiagnosed with a very aggressive and deadly form of cancer and urged to begin a toxic treatment immediately.  Trisha sought a second opinion of another oncologist because she felt fine and trusted her body more than the orders she had being given.  She got a copy of her lab results and the questions began to pile up as she researched the terms and words included in the report. 

Prior to her appointment with the new doctor, she was pretty sure she did not have cancer. The new doctor confirmed it.  Now this is the place in the story many folks would walk away.  Perhaps this would become fodder for future conversations during book club or a great comment to post online in response to a cancer article.

Trisha took this experience and changed her life.  She created a bridge from her old life to a new one of advocacy.  She cannot forget that moment when she was told she had a fatal disease.  She cannot get back those weeks of worry she suffered.

Have you ever held your breath while crossing a bridge?  It is a game that many children play.  It is really fun game until the day you reach a long bridge. That day it stops being fun.  It stops being fun when your vision darkens a bit around the edges and that panicked gasp bursts forward from deep inside.  At this point a child might giggle, forgetting the terror of one moment before.  But Trisha does not forget the terror of that moment she could not breathe.

So Trisha writes and Trisha speaks.  Trisha questions many things and does so in a way that is not off-putting, yet is very much filled with authority.  In this painting she is the cloud and she is the embracing bridge.  Trisha connects people and she uses the tools of online advocacy to make this connections.  She does it through her writing at Every Patient’s Advocate and her patient and caregiver resource the AdvoConnection.   Within this image she is bringing people together, both providers and patients meeting in the middle.   

Above this vignette is Trisha’s face: sacred and serene doing what she must.  Living her mission to advocate for others, for that is Trisha’s calling. 

The Forrest for the Trees: A jacket for Danielle Cass

There are two tiny jackets in The Walking Gallery.  One belongs to my son Isaac, he wears a boy’s size six.  The other jacket belongs to the energetic Danielle Cass.  Danielle works at Kaiser Permanente and she is a manager for the national public relations, media outreach and communications for KP.  Her jacket is tiny, a women’s size small with baby doll sleeves.  It almost looks like a jacket for a little girl.  I understand exactly why Danielle chose this jacket for this painting.  You see inside, Danielle is still a little girl with two wonderful parents.  And those wonderful parents have both been diagnosed with cancer.

Danielle’s parents are retired physicians who dedicated their careers to practicing in public hospitals, conducting health research, focusing on health education to the public and teaching residency programs.

In this picture Danielle’s parents hold her newborn son in the year 2000, before they were diagnosed with cancer.

Her dad is a urologist and introduced mobile lithotripsy to the Midwest.  He was diagnosed with bladder cancer in 2002.  He has endured many surgeries, but still his cancer spreads and his treatment continues, with one complication after another.

Her mother, a family practitioner, opened the first health center for women in the United States in the mid-1980’s.  She also lectured widely about women's health.  Four years ago Danielle’s mother was diagnosed with melanoma skin cancer and advanced lymphoma.  These are two separate non-related cancers, yet she must be treated for both.  Danielle’ mother went through intense chemo, lost her hair, and the lymphoma went into remission. She continues on chemo every two months, and each month has more of her skin removed because of the cancerous lesions.

Danielle’s parents are on a path.  They are on a journey in the deepest forest of cancer care.  All of their years as providers can only help so much for now they are the patients.  Now they are stuck in a non-EMR supported non-integrated health care system.  They are scared and lost deep in the health care forest.  They are bewildered because the multiple providers who engage with them during their journey can’t seem to see the forest for the trees.

In this painting, Danielle’s parents stare into each other’s eyes.  Their gaze encompasses their deep love that spans decades.   But within this love there is also worry and confusion.  It feels as if within a moment they will walk arm in arm, supporting each other on that darkened path with its confusing signs and poorly lit corridors.  Unless you are a patient or have intimately cared for one, it is hard to understand how very scary and disempowering the patient’s journey can really be.

Before them is the forest and each tree is festooned with signs that tell them where to go next.  But often the instructions are contradictory and confusing.  Danielle’s parents find themselves going one way then another without any kind of healthcare GPS to lead the way.

Yes, I understand why Danielle picked this jacket.  She would like to remember a time when her parents were giants, and she was so small.  But that time has passed and the road is long.  It is Danielle’s time to listen to her parents distress and help them in anyway she can.  And she will do it and she will remember.  That experience will inform her life and her job, and help Kaiser Permanente and other health care systems see the forest and the trees.

A Post Script: Six Months Later

This is Danielle with her parents.  She had a chance to show them the jacket in person for the first time.  They were very moved especially when Danielle told them she had worn it on stage.



She wore her jacket at the Social Media Conference at the Mayo Clinic.  She stood out among a the crowd, but there were other walkers there to support.  Both Dave DeBronkart and David Harlow were walking as well.

She wore it again at HealthCamp LA, where she and Mark Scrimshire  led a group through their first unconference.  As they amazed the crowd with the wonderful immersion of open communication that the unconference model affords, they never turned their back on those assembled.  When you where a Walking Gallery jacket you are always face to face, whether it is with Danielle or with her parents.

The Palliative Effect of Hair Styling

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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.