These pages are related to my experiences and research around delirium in the hospital Intensive Care Unit (ICU) and how it has affected me. I hope it will also be of use to some of the other millions that may be dealing with critical hospitalization and the post-ICU psychological and cognotive problems that may result for ICU survivors. Please see links on left side of this page.
My film "On a Phantom Limb" expresses some of this material (available on DVD).
And, my blog, Art and Science of Delirium
The following account is based on my experience of about two weeks in the Surgical Intensive Care unit. I was recovering from unusually extreme surgeries with some complications, and spent longer than the average stay in the Intensive Care Unit. I also want to say that I received fantastic care in one of the best hospitals in the world, and I am deeply appreciative for the care and love that kept me alive. Current research is showing that patients probably would benefit from less sedation while in ICU than previously thought, but I believe because of the extremity of my surgery that less sedation/pain killers may not have been an option. The ICU is a “perfect storm” for delirium and I believe that as new protocols are put into place this may be diminished, but due to the severity of the medical conditions that land people in the ICU, delirium and trauma will not be eradicated. Therefore, my mission is to help patients, family members and care givers to identify Post-ICU conditions and get help for these, when they occur— Post Traumatic Stress Disorder, depression, cognitive problems, and the like. And, to help the nurses, doctors, occupational therapists, physical therapists and psychiatrists in the ICU, with help of patients’ loved ones, notice the patients’ delirium, take it seriously, and do what they can to alleviate it.
This is my story:
(you are trying to save my life––but it feels like you are trying to kill me)
While in I was in the Surgical Intensive Care Unit in 2005, clergy would come around and pray with us. My partner Dru, who had been my life partner for about 12 years at this time, was there just about every waking minute. One day the clergy person took Dru’s hand and my hand and began to pray, and I interrupted and said, “This is a hell of a time to get married.”
I think this story is very funny. But, it also clearly shows what happens when one is in an ICU and drugged and traumatized enough not to be on the same page as everyone else. The patient (me) is trying to take in visual, tactile and auditory clues and put together a scenario that matches the incoming information. In this case, a member of the clergy holding our hands and praying fit with a scene of marriage. I was wrong. And I used an “off color” phrase in front of a clergy person. So I think this story is funny.
Mostly though, my perceptions in ICU led me to conclusions that were not funny at all. 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 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 the nurses would ask me where I was, I desperately wanted to get the answer right, believing this would be my ticket out of there, but I had no idea. I would try and cheat and read the fine print on their name tags, but as I couldn’t see very well, this didn’t work.
In reality, the ICU is a torture chamber. If you take away the knowledge that everyone is trying to keep you alive, what is actually happening can be pretty dreadful. Being on a ventilator is a nightmare, and your ability to communicate by speaking is taken away. If you are agitated you will be restrained so that you stay in bed and don’t hurt or kill yourself. You are probably in pain from a traumatic event or serious illness. And in most cases, you never imagined that this is where you would ever end up. That, along with drugs, makes it hard to make sense of. Along with the delusions, I remember things that “really happened” some of these “real” things were mixed with my delusional fears, for instance: being wheeled to CAT scan where I was sure they were trying to get me off the unit so they could kill me in privacy, waiting in a bed for imaging in a hallway somewhere-terrified, trying to get out of bed and being scolded by staff that I needed to stay (really? I am getting the hell out of here). When I did finally get out of ICU, my sense of reality was shattered. If the delusions had seemed so real, maybe what I now thought was reality was still a delusion. Even now I can have moments when I feel like a ghost in my own life. I can easily start to wonder of this moment is real or a dream. I have a much better grip on this now, and activities like cooking, drawing, making art, playing music and listening to music, all help me stay grounded.
I think many people believe that patients don’t remember the ICU or other experiences related to a traumatic hospitalization when the patient has been barely conscious. The funny thing is I have more lasting memories of my weeks in the hospital than of any other period of my life. I remember many, many things only too well. I also believe that there are unconscious memories that are still at play.
My best example of the effect of unconscious memories is when I was in rehab after the ICU I would sometimes hear helicopters landing on the hospital heliport. I would start crying every time I heard this. When I got home, some friends brought over dinner and ate with us. (our community brought meals for months). They were feeding their baby and making pretend helicopter noises to deliver spoonfuls of food to her waiting heliport mouth. I felt fear and horror and had to ask them to stop making this sound.
It was sometime later that I awoke in the middle of the night, and the memories rushed back of being taken up an elevator on a stretcher to the heliport and loaded into the life-flight helicopter and given a “Madonna” style headset to communicate with the attendants in case I needed to tell them something. So, I believe that events affect us even if we can’t consciously remember them.
While in ICU my eyesight was very poor, even with my glasses, but my hearing was very sensitive. ICU beds are barely separated from the halls and nurses’ station so that patients can be better monitored. Every sound on the unit became material that I used to try to figure out what was going on—to try to understand where I was and my circumstances. For instance: the slamming of a metal cabinet door became a gunshot; one night I asked the nurse if they were rehearsing for a radio show because it seemed to me that the “sound effects” they were producing were so exaggerated-door slams, paper crumples, etc…
I think Dru and my siblings and friends helped save my life. Dru in particular did a couple of things that were major positive impacts on my ICU experience
1) She bought an ipod and put music on it that she thought I would like
2) She gave me opportunities to draw and write
The ipod music was a “place” that I could go. This stereo field of sound was comforting and stimulating. It gave my brain something positive to work on, and gave me sensory input that was interesting and pleasant. I think my favorite was Stevie Wonder’s “Living for the City”. The stereo world that Stevie Wonder created provided a way for me travel away from the horror.
While in ICU, I was fighting to get out of bed, convinced I was being unjustly imprisoned. The nurse on duty and the ICU “sitter” (critical care bedside companion who monitors patients) were frustrated with me and I was feeling very angry and agitated. The “sitter” started singing, and I was entranced. I was the snake and she was the snake charmer. My agitation immediately was reduced. I felt human warmth and attachment to her, a sense of caring and trust. I don’t know what she was singing, but I suspect that it might have been a Haitian lullaby.
When I got home, music was a big part of my healing process. Even though I wept every time I heard certain songs, this weeping was part of getting out the trauma and pain I was experiencing. Some of the songs that were most meaningful to me in those first months were “ I Got Life” sung by Nina Simone, “Midnight Train to Georgia” sung by Gladys Knight and the Pips, “How Can you Mend a Broken Heart” sung by Marvin Gaye, “Stop Your Sobbing” by the Pretenders, “How I Got Over” sung by Mahalia Jackson, “Everyday is a Winding Road” by Sheryl Crow, and many more. One of my first coherent thoughts in the ICU was “Music is the most important thing.” I still believe this may be true. Personally, I think people could wear “medical alert” bracelets that listed the music to play to them in case of emergency.
When I was in rehab working to walk with a walker, brush my teeth and wash my hair, my friend and colleague, composer John Cooper, came to the hospital with his keyboard and played music for me. This was an experience of joy to hear live music, and again when I was recovering at home, a violinist student, Aaron Lewis and his friend came and played Django Reinhardt and other classics on guitar and violin in my living room.
Things happen to the brain in ICU that are still not fully understood. And, I believe that music does something to the brain that can be an antidote for some of the strange things that happen to the brain when a person is on ventilator, and other life support systems. My personal belief is that that one of things that happens due to extreme under-stimulation of being on life support is similar to the effect of sensory deprivation; and many scientific studies have been done that show just 15 minutes of sensory deprivation will cause hallucinations in healthy subjects, and that anxiety increases this effect. This may sound counterintuitive that a noisy place can provide sensory deprivation, but in ICU the sense are deprived of most forms of touching, and if you cannot get out of bed the body is deprived of most forms of movement. Much of the sound in ICU is a sort of “white noise” or wash of random noise. This noise generated by machines and background noise lends itself to auditory hallucinations within the sounds– like the way one can hear a voice or phrase in the repetitive sound of a dishwasher or clothes washing machine. When the brain has fewer real tasks to work on, it can easily turn inward to a delusionary state. I also believe that the default network plays a role in this and I can only hope that scientists will continue to gain support for this type of research that benefits people in ICU’s and their wellness after the ICU.
While I was in rehab and later when nurses provided care at home, more than one nurse said that I was depressed, as I would start crying at the drop of a hat, when people came to visit for instance, or a song played or, well a lot. I was resolute that I was not depressed; I was overjoyed to be alive. I appreciated every moment of being alive, it was a golden period of appreciating life and it brought tears. I still don’t think I was depressed. However, I was suffering from a serious mental health problem, that I am very fortunate that my internist recognized. I called him on the phone one day, a few weeks after getting home from the hospital, and told him that I was feeling strangely, that certain things would make me feel very weird and afraid. I don’t think I was able to describe it much more than that. He said, “We’ve been friends for awhile, and I want you to go see a psychiatrist. I think you might have PTSD.” Later I learned that what I was experiencing was flashbacks and I have learned many of the triggers for these – helicopters, people in pajamas wearing clogs, surgery and medical emergency scenes, images of bondage and torture, certain smells, cacophonous rooms, movies where the protagonist can’t discern what is “real”.
“They say that terror is a disease, and anyhow, I can witness that for several years now, a restless fear has dwelt in my mind, such a restless fear as a half-tamed lion cub may feel. … Though I do not expect the terror of that island will ever altogether leave me, at most times it lies far in the back of my mind, a mere distant cloud, a memory and a faint distrust; but there are times when the little cloud spreads until it obscures the whole sky.”
-H.G. Wells, The Island of Dr. Moreau
Thus began a journey of therapy for Post Traumatic Stress Disorder that is still in process several years later. I am so thankful that my PTSD was recognized and treated early on. And, I passionately want to spread knowledge about this condition and its linkage with traumatic hospital experiences so that other ICU survivors are able to seek the help they need. One of the major ways I have been able to process my experiences is through my art work, and my hope is that sharing this work may help bring attention to areas of critical care medicine, for families, patients and caregivers. To raise awareness and increase opportunities for education about the ICU experience in order to help families improve the outcomes for their loved-ones, and for the general public to become aware of the challenges of cognitive and psychological impacts for ICU survivors; and to encourage more research in these areas.