Over the years, various readers have shared with me their stories. Paula has been kind enough to be willing to share her story on the blog (below). Like many others, she thought she was alone in her experience of delirium and its aftermath. I venture to say that far from being alone, she is among the approximately 35% of those who have undergone major medical interventions and crises. Paula’s story shows, the memories of the hallucinations can be haunting.–Nancy Andrews
” I, too, have suffered with post-op delirium. I had major spinal surgery in November of 2015. It was actually a two day surgery, the first on a Monday, the second on a Thursday. This surgery was basically my last chance to be able to walk without pain. I couldn’t take five steps without bending over in severe pain. The surgery was a success. I no longer have pain and can walk straight and upright.
However, I was no longer me. My eyes were open, but what they saw was not real. My delirium was filled with paranoia, fright and joy. In the ICU, I just knew I heard my husband and daughter fighting and then I heard a gunshot. I thought I heard my husband groaning. In actuality, there was a man in the next room groaning, but I thought my husband needed help. I screamed and screamed-calling his name. Someone came in and I do remember them telling me to be quiet, that I was disturbing others. I could not get them to understand that my husband needed help.
I heard that my daughter (married with 4 kids) was out searching for a blue penis tree. Now, we all laugh at that, but in my head, I had to stop her! I wanted my mother all the time and constantly heard her voice in the next room, even though she wasn’t there. These usually happened during the night. My husband would stay all day and all I did was sleep. During the night, I wanted to see him, but he had gone home.
I thought my mother was marrying my doctor and was so worried about the clothes we would wear. But, all the time, there was an aura of doom and paranoia. When the lights were out, I could see fingers come out of the closet to open the door. I thought everyone was out to get me.
Oddly enough, my world at that time was filled with music, sort of like you. Unfortunately, for other people, it was me singing. The hallucination took on a Wizard of Oz direction, with a yellow brick road in the sky. This is when I started to come back to reality.
I hadn’t been the nicest person during this delirium. This is not my normal to be mean. My daughter actually told one of my doctors that was her mother! She is not crazy and she’s not mean-something is so wrong! I think the doctors were really trying to help me, but it didn’t seem to be working.
I bring the meanness up to finish my story. Every day, someone asked me questions-do you know your name, where are you, why are you here? One morning as one of the aides was standing by my bed, I suddenly felt like the sun was starting to shine, like a warmth. I looked at her and asked if I had been mean to her. She didn’t say a word, but her eyes grew wide. I asked if I could sing her a song, she said yes, and out of my mouth comes “Somewhere over the rainbow!” She then asked me where I was and when she got to my name, I thought I’d be funny and I said “Dorothy!” She whirled around and I said “It was a joke. Dorothy is from the Wizard of Oz.” Would you believe she was the only person I’ve ever known who hasn’t watched that movie!
My daughter came in shortly after that and my two youngest granddaughters had made videos for me. I watched them and began to cry. I asked my daughter if I’d been in a car wreck. She told me I’d been there all along. I felt like the sun just came up in my room and she and I hugged and kissed. About that time, I saw my husband come in and that was all I needed. I cried and held my arms out and told him I was sorry if I’d been mean and he knew my brain hadn’t worked right.
Two psychiatrists came running into the room and they told me they wished I was their patient. They wondered if I was clinically depressed or suicidal before the surgery. No, I wasn’t!
I could see the people in the nurse’s station, smiling and looking at me. The sweet little lady that brought me my lunch came in and I asked her to wait. She turned around with dread on her face. I smiled at her and asked her if I looked any different and she said, yes, you do.
I had a team of three doctors working for my surgeon. When they walked into my room, I wanted to say, just like Dorothy, “and you were there, and you and you!” But, I was afraid of another faux pas.
My family had a Wizard of Oz homecoming for me, banner and all. The bad part is I think about it quite a bit. Everyone just tells me to forget about it, but I can’t. I had many other hallucinations, but some of them must remain private. When I listened to your video, it felt good to know I am not the only one who had this or the only one who keeps thinking about it. It was very disturbing to me and maybe I do have PTSD. That would make sense.
I am so glad I found your video and your blog. Thank you for your brutal honesty. I needed to hear it.”
Paula S. Warren
Art and Science of Delirium 