Monday, July 20, 2009

My Own Story

I was in a major ICU in 2008 suffering from sepsis and multi-organ failure following surgery for pancreatic cancer. I was on far too many medications to mention, and had every conceiveable port and medical hook up imaginable.

And, as they say, somewhere in the process my cheese totally slipped of my cracker. The below are not memories they way one remembers a bad dream. They are - for me - memories like all other memories - recollections of real events. That is what makes them so terrifying. Here they are:

Hell
I was laying down naked on a silver, metal conveyer system similar to the ones used to dispense luggage at airports. This was a counter-clockwise helix, descending downwards. Beside me going all up and down were other patients, but dead, some of them wrapped in sheets or plastic. The conveyer was descending slowly, but I could hear a large metal door opening and closing at the bottom. As I got nearer, I could see the door open and behind it was fire and lava, and people (the bodies ahead of me, now alive) flailing and screaming in the fire. This was Hell. As I got nearer I began to panic and scream and just before it was my turn to be cast in, I suddenly appeared, naked, in an upright bed in a concrete room.

There was a flurry of activity. One of my tormentors was screaming at another telling him to “get me ready” because my family had shown up demanding to see me. They put a new smock on me, and put flowers by my bed, and cleaned my face roughly with a washcloth. I heard the head tormentor explaining loudly outside the screen separating my room from what was beyond it that “You really shouldn’t see him, you know, he’s not well, your visit might upset him” etc. Then he came running back and snapped “That will have to do – they’re refusing to leave and insisting on seeing him!” I remember feeling such relief that my family had come to rescue me and wouldn’t take no for answer! Once they saw me, I could tell them what was really happening, and they would get me out of there.

The tormentor ripped the screen away. No one was there. He laughed and shouted “Ha! Did you really think anyone remembered you! Your family thinks you’re dead!” I screamed and screamed. Honestly, I have never felt more despair and pain then right then.

The Conveyor
Several memories of being placed on a conveyor system and moved to a back room on a plastic sheet. Attendant would hoist me up in the sheet and hang me off a wall, and then they would spray me with a yellow, oily disinfectant. Then the surgeon and his other doctors would come in from a door above the pit and look me over, and discuss my case without speaking to me. They would then leave after giving my attendant the “OK”, and I would be returned to my room. I just assumed that this was how hospitals “secretly” ran and dealt with patients when their families weren’t around, and I actually did not mind it too much. It was just part of the routine, and the doctor always seemed pretty upbeat about the whole thing, even though I was just a piece of meat, really.

The Conspiracy
I had this Japanese Talisman in my right hand pocket in my hospital bed. I knew it was powerful, and allowed me to control metal, but I didn’t know how to use it. One of the nurses saw me holding it. When I woke up, it was gone from my pocket. The nurse came over and leaned in close and said “Do you know what a cop-out is?” I nodded, and she said “Good. My boss, a powerful doctor, wants to meet with you. If you tell him how the Talisman works, he will take your tubes out. If you don’t, he will kill you. Your family thinks you are dying already, so no one will know.” I panicked because I had no idea how it worked. I remember being wheeled through the hospital up to an incredibly ornate Japanese doctor’s office. It was split into many levels, had a view of the city. There was a bamboo garden, and a fish pond. I was propped up. The nurse was bowing to the doctor, who then hit her. She came to me and said that if I could sit up quietly he would remove my tubes. I did as told, but hours passed and I remember crying. The nurse would go to the doctor and plead for me but he said I was weak and unworthy, then hit her again. I waited as long as I could then I reached around my head, undid the Velcro straps and ripped my tubes out [not a hallucination – I really did it in the real world, but this is what was in my head at the time]. The nurse started screaming at me and yelling. I went to sleep and woke up in restraints, with the tubes back in.

I knew I was going to be murdered, and tried for several days, even after the tubes came out, to explain this to family members. I even remember telling Dad that I knew it sounded crazy, but sometimes even crazy things can be true, and that this was one of those times. I asked family members to watch me around the clock, thinking staff may not try to kill me if someone was there. Only my wife seemed to genuinely believe me, and that was a great relief. I told her I forgave her, because I didn’t want her to blame herself for my death after they killed me. By then, of course, everyone would have realized that I was telling the truth all along, but it will have been too late. I remember the doctors bringing in the pathology report and the good news that they had removed all the cancer, but I couldn’t care less. I mean, who really cares that I didn’t have cancer? So what? I was going to be murdered anyway, so why care about a stupid path report?

Sights & Hallucinations
Looking out into the hallway from my room, for several days, here is what I remember seeing: the hallway was a large mall, with several people spray painted in gold, naked, modeling on raised stages. They would often engage in homosexual acts or change poses. This was meant as artistic entertainment for the doctors and nurses who strolled along. There was a large tube system along the ceiling, where severed body parts would float through in a liquid. Sometimes, these were severed limbs stitched to torsos, etc. Occasionally, medical students would look at them and make notes. In the room to my right, there was a frosted window, but I could see that it was full of children ICU patients who were working out furiously on treadmills and bikes, trying to get better, to very loud workout-type music.

I still had some residual powers from the Talisman, and metal shavings were floating into my room from around the hospital. I remember them accumulating on my hospital gown and around my wife’s collar when she was near me, and I asked her to wipe them off for me. But I couldn’t stop them from coming. I was worried they would smother me.

There was also this clock in the hallway that would fly off the wall and attack me, and I had to duck all the time to avoid being hit in the head. I would see cartoons appear on my ceiling, and sports logos appear with music. The curtains near my bed appeared electric and would contain little mobiles, like the kind you hang over cribs, that moved and reflected the light.

My Location
I was always being asked where I was, and I said “Ohio”. I remember very clearly Dad telling me that he had rented a helicopter and flown me to the best private hospital in the US and that everything would be fine. He had paid for a special blood transfusion to save my life. He had even flown a lot of the better staff to this private hospital, which is why I was seeing faces I remembered from my “first” hospital. I would often greet a new but familiar face with “Wow, my Dad flew you here too? Thanks.” Some staff told me I was still at the first hospital. I thought they were lying, and probably connected in some way to the Japanese doctor who was plotting to murder me, so I pretended to play along and made a mental note not to trust them.

Returning to Reality
Keep in mind, all of the above was happening as a mix of real events and imagined. Both are equally “valid” memories, in that I remember them as actual events, not the way you would remember dreams. Even when I had come out of it, and had my tubes out, it was a while before I started to question the accuracy of some of my memories.

First, I remember thinking that there are no pockets in hospital gowns. If I didn’t have pockets, then I couldn’t have a Talisman stolen from them. This means that the Talisman storyline must be false. It took a while for this to sink in, but if it’s true then that meant I was not going to be murdered after all – a huge relief! This was the point where my attitude changed.

There was this nurse I trusted. One night I called her over and asked her if I could ask her some questions that might sound a bit odd. She said sure. I asked:

• Is there a Japanese doctor with a large office with a pond and bamboo garden at the hospital?
• Are there gold coloured naked people in the hallway?
• Are there many children in the room next to me on treadmills?
• Are my curtains electric?
• Are there movie projectors showing cartoons on the ceiling?

She answered “no” to each question, without for one moment betraying that she thought the questions were odd in any way. Then I asked her where we were, and she explained exactly where we were, what floor, etc. She turned me around and wheeled me to my window so I could see my city’s skyline.

I remember thinking, “What a relief. I’m just nuts.”

Even today, though, these disturbing thoughts still register as actual memories, as real as any other memory. I just “know” them to be false, but I’m sure I still haven’t sorted all the fictional ones out yet.

A Note to Families

Families need to understand what patients are going through, and what they can do to help. Here is an excellent article you should read about patient autonomy and ICU Psychosis.

Here are some tips for family members visiting patients:

Please Remember:

  • Delusions are folded into real events, and the patient cannot distinguish between what is real and what is a hallucination. They may seem totally coherent and normal, then come out with something totally wacky. Be ready for this.

  • The delusions cause anxiety and depression. They are often more depressed about the delusions than the underlying medical condition.

  • All ICU patients want one thing more than anything else: Extubation. They want the tubes out. They will beg, plead, rip them out and lie to staff to get them removed. Go with the medical advice, and (as much as it pains me to say it) ignore the patient on this.


Do:


  • Listen to the patient or always have a large piece of paper and marker for them to write (scrawl) on.

  • Tell them you love them, and will protect them.

  • Ask them if there is anything you can do to help.

  • Emphasize "trust" in what they say.

  • Work with them to develop an action plan to keep them safe (from whatever the delusions are telling them is a threat). This might be as simple as scheduling rotating visits so a family member is always "on duty" to "watch over" medical staff. Or maybe it means making sure a particular staff member who is the focus of a delusion is no longer scheduled to care for the patient. Or maybe it means moving an IV pole so they can see the read out, or removing an object that comes to life and attacks them. Often, the patient needs very simple things to bring great relief.

  • When asked if you believe them, say you "trust them" and will do whatever you can to help. You do not need to "buy into the delusion" - just agree to trust them and act accordingly.

  • Insist on psychiatric help. Hospitals have staff trained to deal with these situations.

  • Agree to restraints. Because these delusions are real, they may harm someone or themselves (e.g. ripping the tubes out). Check the restraints to be sure there are no injuries.


Do Not:


  • Tell them they are delusional, or directly challenge the accuracy of anything they say! Please, if there's one screw up you really, really need to avoid at all costs this is it. When someone told me I was delusional I would assume they were part of the conspiracy against me, and I no longer trusted them or wanted to see them.

  • Breach their trust. If they have asked you to stay with them while they sleep (so as to protect them from murder), do NOT leave the room just because they have fallen asleep. They will wake up, see you're gone, and never trust you again.

  • Stop visiting.

A Note to Patients

You are not alone. Many of us have suffered through the same thing as you. As you read the stories of others, you realize just how "textbook" your case really is! I have posted my own story here so that you can know this one thing: You are not alone.

Ongoing mental health treatment may be required. In particular, ask your physician about Ativan sublingual tablets to deal with Panic Attacks that can occur when thinking about your experience. They work.