Link to my TEDx talk here
or read the transcript here:
For 3 weeks I was held in a room,
I was tied to the bed if I tried to get away.
I couldn’t talk; I couldn’t eat;
I was not allowed to sleep;
Groups of people would enter the room and look at me and talk about me and I was sometimes undressed in front of a small audiences.
I was shot full of drugs;
I was too weak to move;
I could not see my body but it had been cut nearly in half.
Insects crawled on the walls and ceiling.
I was stuck in the bottom of a boat floating down an underground waterway,
stuck in a well,
tethered to the ground by rubber tubes attached to my genitals.
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.
Sometimes, they would move me into another room so they could secretly try to kill me, or wait until the middle of the night to kill me when no one was around because I had found out about their pornography ring;
I told my partner about the enemy in hushed tones so that they would not hear and redouble their efforts to kill me.
Where was I? They asked me everyday and I never knew the answer.
I was in the ICU of one of the best hospitals in the world, where nurses and doctors were using all the most current medical know-how to save my life.
When I visited my surgeon some months after the hospitalization, I told him about my terrible memories and the resulting diagnosis PTSD, he said, “PTS…what? People don’t usually remember anything from the ICU. “
Why was having flashbacks? Why was I having nightmares? trouble sleeping?
Was it because I was weak? Did I lack resilience? Was I too sensitive? Was I crazy? Why couldn’t I seem to move on? Why was it so hard to do the things that I used to do fairly easily?
Why wasn’t I “perfect” the way my surgeon said I would be when I was physically healed?
What happened to me in the hospital? Yes, my life was saved, and I am grateful for that, but life AFTER the ICU was extraordinarily difficult, not only physically but also mentally.
My surgeon had said that maybe my memories helped me survive. But these memories were of things that did not really happened. The staff was not trying to kill me–they were trying to keep me alive, there were no insects in the room, there was no pornography ring taking pictures of me. Even though these memories were of hallucinations they affected me just the same as if they had really happened. I looked for answers on the internet and I found the medical term “delirium”.
Delirium is a brain disorder, with confusion, a general misunderstanding of what’s going on around you, disorganized thinking, and hallucinations.
The ICU is a perfect storm for creating delirium— isolation, sleeplessness, narcotics, inability to speak, pain…separation from everything that defines our normal lives.
Why is delirium a problem?
Delirium in the ICU is a serious complication connected with increased time on ventilators, more infections and more likelihood to die in the ICU. And delirium has been linked with Post-ICU Syndrome, defined as long-term cognitive and psychological problems after leaving the ICU.
The Wall Street Journal reported recently:
3 out of 4 patients in the ICU develop delirium, and more than half exhibited effects similar to Alzheimer’s disease and traumatic brain injury one year later.
Most people are familiar with the basic warning signs of a heart attack, yet very few know that Post-ICU Syndrome exists, much less what the warning signs are, and how to get help– even though more than three times as many people are affected by POST ICU Syndrome as are by heart attacks.
For medical community there is some resistance to hearing our stories, we saved your life and you are bitching about this? But, the truth is, that for some people they would have just as soon have died, because life with Post ICU Syndrome is so difficult. The PTSD and cognitive problems: which involve thinking, understanding, learning, and remembering, may make it impossible to do our jobs or live the lives we did before. And even our friends and family would rather hear how this brush with death has made us stronger or better people, not weaker or less able.
But, my surgeon was “on to something” when he said maybe the memories helped me to survive.
I am an artist. And I practice art as a way to understand and interpret my life and the world I live in. While I was in the ICU my partner, who is also an artist, offered me pencil and paper to make drawings. She asked me to draw the dog that I would like to get once we got home. My first drawings were considerably worse than a two-year-old’s, just a series of jagged lines. But After a few days I could draw something that resembled an animal, with legs and ears.
Before my hospitalization, I was a filmmaker. But for months after, I was too weak to make films, but I was able to draw. I drew images related to my memories. While in the hospital I thought about birds and talked about their ability to go between heaven and earth and to negotiate the space in-between, that space that I had inhabited within my delirium. So, I created an heroic bird girl avatar that represented myself. It turns out this drawing process was one of the keys to healing; to piecing back together my fragmented sense of self. By externalizing my memories, I began to understand how my version of what happened related to what really happened. For the patient who has experienced delirium, one of the keys to putting yourself together is to understand your experiences and to accept them.
Eventually I made a film “On a Phantom Limb” that was another step in understanding what I was going through. I feel fortunate that as an artist I was able to use these methods to move forward in my life.
Another key to survival for me was music. While I was in the ICU, I think my partner, Dru, did something that helped save my life. She bought an iPod and put music on it that she thought I would like.
The music on headphones 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. 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.
One of my first coherent thoughts in the ICU was “Music is the most important thing.” I still think it’s true. When I got home, music was a big part of my healing process. Even though I wept every time I heard certain songs, and still do, this weeping was part of getting OUT the trauma and pain I was experiencing.
I believe people should wear “medical alert” bracelets that list the music to play for them in case of emergency.
Why aren’t more people talking about POST ICU Syndrome and how to get help? Where are the voices of the 2 million people a year suffering from post-ICU syndrome?
1) Half of all ICU patients are age 65 and older .
When folks over 65 come home from at stay in the ICU with what looks like dementia, they and their families may just accept this decline, and don’t realize that it might be treatable.
2) Avoidance is a common reaction to trauma. It is natural to avoid talking about a stressful event.
3) There is no pill that will fix it. At this time there is no clear drug therapy for Post ICU syndrome and PTSD.
For those of us suffering with this condition the journey is complex.
Oliver Sacks writes about hallucinations as something that can “constitute a severe challenge to a person’s world view and belief system.” This makes them something people find hard to reconcile and place within their life experience.
As an artist, I can’t conduct the scientific trials to prove the effectiveness of music or art on delirium and Post ICU syndrome, but there ARE studies being done currently. And Researchers and hospitals are now working on preventing ICU delirium because it is believed about 1/3 of delirium cases are preventable.
What I can do is tell my story, show my artwork. My drawings have been used in hundreds of PPTs by researchers trying to help other healthcare professionals understand with what the experience of delirium might be like. I maintain a blog with links and articles to help others learn about delirium.
And, I can share advice based on my experience.
Reach out to people. Talk about what you remember. Draw, play games, listen to music, dance, do physical therapy. Reconstruct what happened to you and sort it out. Talk to your doctor. Ask for help. Learn new things.
And for friends and family don’t give up on that older person who seems to suddenly be slipping into dementia after a prolonged ICU visit. Alert your healthcare provider of these changes and ask about the reversibility of the symptoms.
This is the time to coordinate care between the psychological, the cognitive, and the physical.
The sooner we get help, the better we do.
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I too suffered ICU psychosis/delirium in Dec. of 2014. I had hallucinations, paranoia, became violent enough that the staff called a “code green” and many large people rushed to my room to tie me down to the bed. Later I asked/begged the nurse for some water and she told me I had to say “pretty please”. Almost all the staff acted like I could control what I was doing and were angry at me for being so “noncompliant”.
Their nursing notes reflect an extremely judgmental attitude towards my actions.
No one explained what was happening to my family.
Eventually, I was calm only when a family member was holding my hand.
I currently have 2 required surgeries in queue but I have decided that NO MATTER WHAT, I will NEVER enter a hospital as a patient again.
I still have marked cognitive deficit, I am unable to make a cash transaction, I lose time and can’t remember the day or date. I am on antidepressants, anti-anxiety meds, sleeping pills all in addition to my heart meds. Most days I feel like a zombie and it’s even hard to make it to my therapist’s office.
I felt that no matter what, I always would be able to contribute to my well being if the situation required it.
That security is gone. I know that there is a very dark place in my mind and I would rather die than return.
I know that people can take away your control, dignity, security and well being under the guise “saving your life”.
I wish I could show them my life now…
Dear Linda, I think that your experience parallels many people’s stories. You are brave to share. Please know that you are not alone. Also, many healthcare professionals are working to try and reduce the number and severity of the kind of experiences that we have had, and also to provide more information for families and others. I also believe that with time and continued therapy, the cognitive and psychological symptoms after delirium/trauma become more manageable. I identify with your struggle for recovery and encourage you to keep telling your story and reaching out for help. I know how dark the dark days can be, and without seeming to discount that in any way, I want to encourage you to remain optimistic. For me too, going to the hospital is like going back into the lion’s den. One of my coping strategies has been to be very up front with everyone about my PTSD and letting them know that I need this condition to be recognized in in the choices being made in my care.