After everything that happened the day I got my EVD and trach (click here to catch up), I really started to spiral out of control. I had just experienced a worst nightmare situation of being paralyzed and aware, but unable to tell anyone to stop what they were doing; and now because I had a new trach, I was unable to tell anyone what happened to me. All I could do was cry uncontrollably for hours on end. I was also not sleeping much at all, was heavily medicated, and experiencing a condition called ICU delriium. The combination of lack of sleep, heavy meds, and the delirium, caused me to struggle immensely. To look at me on the outside, I may have been lying there looking fairly comfortable, but on the inside, I had a constant loop playing in my head over and over that I was back on that OR table, in pain, paralyzed, and unable to speak. There was nothing I could do to escape the mental torture, and it really did feel like torture at times. I developed severe anxiety- mostly involving my neck and not wanting anyone to touch my trach or suction me. I also became severely depressed and the only thing I wanted was to see my kids. I don’t know how to put it into words to really convey the need I felt to see my children. It was like a deep, physical pain I had that only seeing them could fix, and no one could satisfy me in any way until I saw them. I remember trying to scream and kicking my feet in the bed because I wanted to see them so badly.
The delirium ended up getting so bad that putting me into a coma was being discussed- I had not slept more than about an hour at a time in over a month. They opted not to do this, though, because of the liver damage I already had. This left me extremely confused and when I would actually fall asleep, I would wake up in a panic about fifteen minutes later and be mad as hell because I thought I had been asleep for twenty four hours. It was quite a vicious cycle, but probably mostly for the poor souls trying to take care of me.
I can’t imagine how difficult it must have been for my family to deal with seeing me in a state that was clearly not the person I normally am. I’m really not sure how much I understood what was going on because I remember laying there thinking I would be at home in a couple of weeks and I was going to make snickerdoodles and homemade caramel for all of the staff- HA! HOW WRONG I WAS!!! At some point, though, I must’ve realized the bleakness of the situation because I became…. just…. completely despondent. I felt like I was in a revolving door of depression, physical agony, wanting it all to end and not being able to do a damn thing about it. At some point a girl named Hannah started coming into my room for music therapy; she had the most beautiful voice, and she learned and played some of my very favorite songs for me: “Coming Undone” by korn, and “Come as you are” by Nirvana are the songs I remember the most. I *think* she also did “Nutshell” by Alice in Chains. I’d give anything to have a video of her singing those songs!
Looking back, I think the only thing that got me through was the people in my life, and the people taking care of me. My nurses and doctors FOUGHT for me; my family was with me at almost all times; and I had a constant stream of people coming into my room MAKING me fight and not allowing me to give up. I’ve said this before, but when someone tries to complement me for getting through all of this, I feel like a fraud because I did want to give up- it was the people around me pushing and encouraging me that got me through. Well, that and the Cymbalta they eventually had to put me on! 😉