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 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.
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.
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.
We need more Trisha Torrey's: people who are healthy and capable of advocating for those who are ill, disfigured, disillusioned and financially ruined by poor medical care/advice. Our nation will benefit from the public conversation about patient safety and patient rights. Our culture now relegates patients to a non-stakeholder position and marginalizes them in federal FDA decision-making, but holds them fully accountable when a treatment fails. Profit goes to the medical providers with credentials to enter the rooms where the decisions are made.
ReplyDeleteJoleen, yes we do need more Trisha's. Lets do our best to support those who wish to join us who are whole and hale as well as those who still suffer. They can speak for the hundreds who can speak no more.
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