by Nancy Andrews
I am starting this blog as one of the expressions of my contribution to the Artist in Context project “Prospectus for the Nation” http://www.artistsincontext.org/index.php/prospectus/about.html
My goal is that various people will offer guest blogs here–scientists, artists, people affected by illness, philosophers, nurses, psychiatrists, therapists….anyone who would be generous enough to offer their perspective in relation to this topic.
This first blog entry is an adaptation of a presentation that I gave at the Comics in Medicine Conference in Toronto, July, 2012–Loupette and the Moon: A Graphic Pathography of Genetics, Destiny and Trauma
It outlines my activities related to my experience of ICU Delirium and the ways that I have used art as a way to understand my experiences and connect to others—both those who have lived through these kind of events and those in the medical field who are researching delirium and providing treatment.
When this story begins I am age 44, working as a college professor and just finishing a film trilogy featuring Ima Plume, Public Illustrator.
As Ima Plume says near the end of the last film in the trilogy, “The Haunted Camera,”
“There were things I could draw pictures of, and there were things that couldn’t be drawn. More and more I was attracted to the second category. There were things I wanted to describe, but I didn’t know how. There were things that I wanted to show but there was no way to show them.”
For me, drawing is an attempt to get nearer to those things.
I have lived with the diagnosis of Marfan syndrome since I was 20 years old, undergoing open-heart surgery at age 21 to replace the first few inches of my aorta with a composite graft due to an aneurysm. Since that time, I was followed with MRIs to check on the rest of my aorta, which by my late 30s was starting to develop a significant abdominal aneurysm in an inconvenient spot where the vessels for the kidneys and spine join, making surgery dangerous. Unfortunately, I experienced a dissected aorta during the months the surgeons waited for the aneurysm to get to a certain size before doing prophylactic surgery. When this occurred, I was lucky enough to be life-flighted from Maine to Brigham and Women’s Hospital (BWH) in Boston, where I spent about one month undergoing multiple surgeries that saved my life and restored me to “normal” functioning. While at BWH I spent about 2 weeks in ICU, where I was combative and disturbed, believing that the staff was trying to kill me. One of the problems with delusions and delirium is that it makes it difficult to treat the patients, and they can harm themselves in the struggle. Also, many persons are affected with Post Traumatic Stress Disorder (PTSD), as I am, and other Post-ICU psychological and cognitive problems.
The following text from a narrative I wrote based on my experiences in the Intensive Care Unit. The full text can be found on my website: http://www.nancyandrews.net
“I believed that there was a conspiracy, a ring of sexual predators who were photographing patients in untoward positions (including myself) and putting these images on the web as pornography. I knew about this porn ring and was trying to put a stop to it. As a result, some of the nurses and other caregivers that were involved in this porn ring were trying to kill me. I was trying to get the story out with evidence that I had written and evidence that was hidden in the ‘sharps container’ on the wall.
Of course that seems absurd now, but at the time it was extremely real.
If I had one word to sum up my ICU experience it would be ‘horror.’
In addition to my paranoid delusions of people trying to kill me were hallucinations of ants on peoples’ faces; weird things in my IV fluid bags; nightmare-like hallucinations where I was variously stuck in the bottom of a boat floating down an underground waterway (think “Phantom of the Opera”); stuck in a well (think “Silence of the Lambs”); being tethered by rubber tubes attached to my genitals to the ground by cruel pseudo-parents…I was on a raft, in a space-pod, in a fly-by-night health clinic, in a conference room, in a library, in the arctic, in the desert and even in a hospital, each with its own terrible narrative. These hallucinations, along with the awful things that were happening ‘for real,’ finally got me to a point where I thought ‘I have to give up, I will either die or live but I can’t fight anymore.’ I was pretty sure I would die, but inexplicably at this point, I emerged to the surface and survived.”
When I got home, I was too weak to lift more than a glass of water, I walked with the aid of a walker and then a cane, and I spent almost all of my time on the couch. I couldn’t use a computer or type, but one thing I could do was draw a bit. My “prosthetic” was a Dacron aorta (on the inside of the body), but I have shown it here as a prosthetic leg and arm.
When I was stronger, and I could go into work at a drawing table, I started drawing on bigger paper, 22”x30,” and using Sumi ink (black is my favorite color) and some photocopy collage.
The next few images are some of the almost 100 drawings that I did in this series.
I realize now, this was a way to externalize my memories and try to understand what had happened to me.
During this period of recovery, I discovered I had PTSD. At this time in 2006 there was very little information in the public sphere regarding the connections between medical trauma and PTSD. There is much more information available now. I will summarize some statistics:
Over 5 million U.S. Adults enter an Intensive Care Unit (ICU) each year.
Roughly half of these patients later experience Post-ICU Syndrome, defined as long-term cognitive and/or psychological disturbances after leaving the ICU (Robert Wood Johnson Foundation, 2010). Between 50-80% of ICU patients develop long-term cognitive impairment (Landro, 2011), while 30% develop clinical depression and 15-40% develop Post Traumatic Stress Disorder (PTSD) (Vanderbilt University Medical Center [VUMC], 2011a).
“Delirium has recently been shown as a predictor of death, increased cost, and longer duration of stay in ventilated patients. Sedative and analgesic medications relieve anxiety and pain but may contribute to patients’ transitioning into delirium.
“…Most patients with delirium in the ICU likely have multiple causes, though these causes are often very difficult to determine with clinical precision. In fact, in our past work, we have determined that on average, ICU patients have greater than 10 risk factors for delirium that places them at a very high risk for this complication. Critically ill patients are at great risk for the development of delirium in the ICU. With more than 8 out of 10 ventilated patients experiencing delirium, this is one of the most frequent forms of organ dysfunction experienced by critically ill patients. Despite this prevalence, delirium (usually in the hypoactive state) remains unrecognized in 66% to 84% of patients whether they be in the ICU, hospital ward, or emergency department.”
The following description is very good, but note “medical trauma” is not included in the list of “life-threatening events”.
Postraumatic stress disorder (PTSD) is an anxiety disorder that can occur after you have been through a traumatic event. A traumatic event is something horrible and scary that you see or that happens to you. During this type of event, you think that your life or others’ lives are in danger. You may feel afraid or feel that you have no control over what is happening.
Anyone who has gone through a life-threatening event can develop PTSD. These events can include:
* Combat or military exposure
* Child sexual or physical abuse
* Terrorist attacks
* Sexual or physical assault
* Serious accidents, such as a car wreck
* Natural disasters, such as a fire, tornado, hurricane, flood, or earthquake.
After the event, you may feel scared, confused, or angry. If these feelings don’t go away or they get worse, you may have PTSD. These symptoms may disrupt your life, making it hard to continue with your daily activities.”
-US Department of Veterans Affairs
I didn’t have the strength or desire to make another film for the first couple of years after my return home, but I was incredibly fortunate to receive a Guggenheim Fellowship in 2008 that gave the encouragement, time and means during 2008-2009 to make “On a Phantom Limb”. The film was developed out of my drawings and included them in some segments. The DVD also includes “extras”— interviews with health professionals about my surgery and the experience of PTSD.
I had been thinking about how to use my artwork to share my experience of medical trauma, ICU delirium and its aftermath and to somehow improve patient experience. But at first this would be accomplished through spearheading a research study that showed how listening to music in the ICU through headphones might be beneficial to people in ICU. My theories were based on my experience of being “saved” by music. I had been in dialogue with Dr. Barry Kosofsky, Professor of Pediatrics; Chief of the Division of Pediatric Neurology at NewYork-Presbyterian Hospital/Weill Cornell Medical Center; and Director of the Horace W. Goldsmith Foundation Laboratory of Molecular and Developmental Neuroscience. We have kicked around various ideas for studies, but between our various other responsibilities and interests have not embarked on any real project.
I was approached by ARTISTS IN CONTEXTco-directors, Marie Cieri and Louisa McCall, and asked to work on a project with them. ARTISTS IN CONTEXT is a flexible organizational framework designed to assemble artists and other creative thinkers across disciplines to conceptualize new ways of representing and acting upon the critical issues of our time.
Thinking about my work, I wondered: how do these expressed narratives of patient experience enter into dialogue with medical research, patient education and public awareness of health/medical issues?
One day in mid-January 2012, I thought back to the drawings I had done while working on my film “On a Phantom Limb,” and I thought about having a show or using those drawings in some way to raise public awareness of ICU delirium and its aftermath —using drawings and film to raise awareness about the patient experience in ICU and its possible effects on patient and caregiver mental health and cognitive functions after ICU.
In particular, what happens after the patient leaves the ICU?
Up to a year after discharge, “as many as half of ICU patients are unable to return to work” (Landro, 2011). Increasing evidence suggests that “a significant portion of ICU patients go on to experience considerable psychological distress for months, even years, after their stay” (Skirrow et. al, 2001). This may manifest in the form of PTSD, depression, or anxiety.
I spoke with the directors of Artists in Context (AIC), Louisa McCall and Marie Cieri, and a new phase of our work began through another of their projects, “Connected and Consequential.”
Our first steps were to network, to see how the drawings and film might relate to work being done in the field of delirium related to critical care medicine. Louisa McCall and I met with Gerald Weinhouse, Associate Physician at Brigham and Women’s Hospital and Assistant Professor of Medicine, Harvard Medical School as well as Dr. Michael Belkin, Chief of Vascular and Endovascular Surgery, Brigham and Women’s Hospital. We showed them drawings from the Delirious series and discussed relevance of my art to their work. We also had a phone conference with Dr. Sharon K. Inouye, the Director of the Aging Brain Center at the Institute for Aging Research, Hebrew SeniorLife in Boston, MA. She also is a Professor of Medicine at Harvard Medical School (Beth Israel Deaconess Medical Center). I shared the artwork with Vanderbilt University Hospital’s ICU Delirium and Cognitive Impairment Study group, founded by Dr. Wes Ely, who connected me with Dr. Michele Balas, Assistant Professor at the University of Nebraska Medical Center’s College of Nursing. I was surprised how interested they all were in the drawings and the film. One of the immediate benefits to medical professionals is the ability of the drawings and writings to communicate with others the phenomena of ICU delirium. We discussed other possibilities of collaborations between the artwork and the medical community involved in delirium research and improving critical care outcomes: a book? an exhibit? trainings for doctors and nurses to better understand the patient experience of ICU delirium? Could the drawings be used as a way to help patients talk about what happened to them and express PTSD or cognitive problems?
So far the results of this networking are:
The Delirious “Tour” —A series of screenings and discussions with panels that included a moderator from Artists in Context, medical professionals and me that we did in Cambridge, MA; Portland, ME; and Bar Harbor, ME. We printed a bookmark with drawings, info and web url that was distributed at the screenings.
Consulting on a website with Michele Balas www.icusurvivors.com
Developing my website www.nancyandrews.net to include my personal story, drawings, links and information geared to the layperson about ICU delirium and its aftermath.
Dr. Weinhouse connected us with David F. Gitlin , Director, Division of Medical Psychiatry, Brigham and Women’s/Faulkner Hospitals, and Assistant Professor of Psychiatry at Harvard Medical School, who proposed a conference presentation that will occur in November 2012 at the ACADEMY OF PSYCHOSOMATIC MEDICINE • 59th Annual Meeting Bioethics at the Interface of Psychiatry & Medicine
“On A Phantom Limb” – A Cinematic Presentation of Patient Experience of Delirium
A screening and discussion with two psychiatrists :
Paul Summergrad, MD, Professor and Chairman of the Department of Psychiatry at the Tufts University School of Medicine, and Samata Sharma, Fellow in Psychiatry at Harvard, and me.
One question that interests me for this discussion:
How does the film, “On a Phantom Limb” show the antithetical narratives, so present in critical care medicine, of reconstruction of the body vs. deconstruction of the self; mutilation vs. repair; delirium vs. heightened awareness of existential truths ?
Loupette and the Moon
Initially when ARTSITS IN CONEXT invited me to be aprt of the Prospectus for the Nation,we agreed that my Prospectus contribution would be a comic book concerning Loupette, a girl with the genetic disorder, hypertrichosis.
One of my first areas of research was movies. My favorite, “The Wolf Man,” 1941, touches on psychological topics of madness and predestination.
Another, “She-Wolf of London,” 1946, presents a young woman who is convinced, by physical evidence and individuals who want to destroy her, that she is a werewolf who commits nighttime murders that she does not recall. There is a legend in her family that werewolf-ism is a family trait. Again, the themes of insanity and destiny are foregrounded in this film with an added aspect of genetics.
Another link between werewolves and genetics appears in the genetic disorder hypertrichosis.
The character Loupette has hypertrichosis, sometimes called “werewolf syndrome,” causing an abnormal amount of hair growth on the body. Like most werewolf stories, this narrative explores themes of in/sanity , destiny and genetics.
As my much of my work, this project did not begin with words, it began with images, and in the end has very little language in it. My theory is that when people read comics they tend not to look at the pictures as much as read the text, and the images become illustrations of the text. I was interested in having the images tell the story. Maybe in this way there is room for interpretation, or room to internalize the experience while actively having to work out what is happening. In many ways this comic is an exercise in acceptance of my own genetic mutations, and Loupette is an “avatar” for me; her genetic mutation of hirsuitism is different than mine of Marfan Syndrome, but the struggles are not so different—in trying to understand who I am as a person with a genetic mutation that is life-threatening and life- changing to try to determine how to be defined as a person, and by whom to be defined.
In Loupette, there is an expression of multiple realities as one finds oneself in different arenas. And these arenas include fantasy and delusion. I think for an artist it is common to feel like an outsider to much of the rest of society and even to one’s own family. When I was a child, I determined I must be adopted, because I did not look like the others in my family; that was well before my diagnosis with Marfan Syndrome. It is ironic to me to be presenting here and identifying myself with this work as an artist with PTSD or an artist with Marfan Syndrome because I have never wanted to identify myself foremost with these disorders, or with any group or movement or orientation, and, like Groucho Marx , “ I don’t want to belong to any club that will accept people like me as a member.” .
In both my film “On a Phantom Limb” and the comic Loupette and the Moon, I want to invite the viewer/reader to enter the in-between, fluid, unstable, fluctuating space that I inhabited while in the intensive care unit, hanging between life and death, and in the aftermath of surviving this critical illness. A state of delirium challenges the perception and understanding of reality, which in our present dominant culture is defined by rationalism and empiricism. Reality, I think, is less stable than we like to believe. Not only is it incredibly subjective—we might agree on certain things but we probably see most things differently through our own lenses of experience and sensory foci — but also, after believing my hallucinatory experiences to be true, I realize there is almost no way to prove the reality of any moment…how do we know that we are not dreaming or in a hallucination right now?
Most of the the written language in Loupette is saved for the end, with two essays. The first is an “Afterword” that gives some background of my thinking and experience in creating Loupette, and the other essay is written by Walter Robinson: “Loupette and the Tyranny of the Average.” Walter M. Robinson, MD, MPH, is Distinguished Scholar/Advisor, Center for Applied Ethics, Education Development Center. Walter ‘s research focuses on ethical issues in chronic illness and the moral demands of professional practice and research. He directed the Fellowship in Medical Ethics program at Harvard Medical School for five years and was an Associate Professor of Pediatrics at Vanderbilt University. He is now pursuing an MFA in writing at Bennington College.
My questions at this point :
Where do the disciplines of drawings, art and comics that come from medical experience and the “science” of medicine come together?
How are forums and means created so the artwork is not simply to “further” the pre-existing mission of the science/medical community in an illustrative way, or simply an adjunct to the work of healthcare— rather, how can artists work in collaboration to create a place for the art that is combined, synthesized with health or science practice into a coherent whole?
This blog is an effort to invite collaboration and to present ideas and ways of knowing that emerge from the realm of science and the realm of art and present them side by side in a non-hierarchical form.
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This post is breathtaking in its scope and focus not just on delirium but on the nature of personal reality. It reminds me of the efforts of Luisella Magnani, whose guest posts have appeared on my blog. She too is driven somehow join the worlds of art and science together, and her latest effort is the creation of a preverbal pediatric emergence delirium scale. This is driven by the death of her nephew, an infant who suffered delirium. I think your experience of delirium and the expression of it in your art can and should transform the science of delirium.
I hope I can view your presentation at the APM meeting next month.
Jim Amos, MD
The Practical Psychosomaticist
Oh my dear God. Finally! Someone I can relate to. It has been a year since my emergency surgery to save my life from internal hemorrhaging caused my a resistant infection in my right lung which most of it had to be removed. I have been anxious this past couple of weeks and had to call my partner to come home as I was “freaking” out. It took me several months to be convinced that what happened to me in the hospital really did not happen. But insane as it sounds, I wonder if I crossed over into another dimension. My episodes were not surreal or like a dream, it WAS my reality. I too, felt there was a conspiracy amongst the medical staff hence, I did not complain, but asked my partner to get me a gun as I feared for my life. I had seen a woman shot point blank in the head and strung up in a door way to my room. This was the most horrendous of my several episodes and it went on for hours. I actually felt the terror of a person who knows they are going to die by another and I even called the police from my hospital room. I attempted to go back to work but felt I did not have the stamina and was hallucinating for a couple of months after discharge. Only psychiatric history is clinical depression and anxiety disorder. Have never been hospitalized for either. When I tell my story to people I can sense that they do not understand so I stopped talking about it. I am now on disability and a recluse. Going out of the house is getting more and more difficult and now I am reliving the episodes as I write. God help us all that have been afflicted with this horrid beast of a disorder! Gail McMichael AKA Gail Le Gra on Facebook.
It breaks my heart to read your story, and yet I can relate to all of it—the massive confusion about “reality”, the fear, the paranoia, and the continuation of the fight after we return home. I also understand that talking and writing about it brings you back to the horror, but from my experience expressing what happened is also a way out of the cycle. Please seek help from your doctor. Ask your healthcare provider to connect you with a therapist that has knowledge and experience with PTSD. I am not a medical practitioner, but all I have been through and read points in the direction of the sooner we get help the better we do. I think you are very brave to write about it in a public forum. You are NOT alone!
All my best to you.
Gail, I urge you to seek help and find a way to deal with the trauma of the ICU. I am a RN and have worked in ICU for many years. Currently, I am the educator of 2 critical care units and working hard to teach our nurses about this very misunderstood phenomena.
From the other side of the bedrails, we have no way of knowing the alternate reality you are in. To us, you seem sedated, calm, and unaffected by everything we do. Coming forward and talking about your experiences as Nancy has done helps to break down that misconception, and hopefully will help you deal with what looks to be very severe PTSD.
I am sincerely sorry on behalf of nurses everywhere that we were not able to protect you better. Trust me when I say that is NOT why we became nurses, and I always hate to hear of stories where our care was less than compassionate. We didn’t know you were suffering, but that doesn’t make it alright.