Lost in Wonderland
Updated: Jun 20, 2019
As I emerged from the darkness, I awoke to people surrounding me, discussing how they were now going to extubate me for the second time. I still was unsure of what was happening, but the horrible pain I felt as the tube was ripped from my throat confirmed to me that I was indeed alive. It was pain comparable to the pain I had experienced in my head, and I did my best attempts to talk. But I still had a feeding tube placed down my nose, which rubbed against my raw throat only increasing the agony I was in.
Through the fog of drugs, I tried to make sense of the scene around me. I often floated out of true consciousness to what I can only imagine is what Alice felt like when she fell down the rabbit hole into Wonderland.
As the nurses tried to explain things they were doing, I struggled to comprehend the entire situation and to form coherent thoughts. Instead, I resorted to pure anger and aggression loudly shouting "I am a motherfucking Nurse Practitioner, do not speak to me like I'm an idiot." What i truly wanted to say in that moment was that they did not have to talk down to me and that I could understand all the medical jargon that was being thrown around my bedside. Those that know me personally would probably get a good laugh at the fact that I came out with that mouthful right out of a coma. It was completely uncharacteristic of me, but I could not comprehend the emotions I was experiencing, or really anything that was happening around me.
My mom finally told me that I had had brain surgery, to which I promptly responded "oh shit." And then it was explained what the surgery had entailed, that my skull was gone right now. I attempted to grab the right side of my head, but was stopped by my medical team for fear of creating an infection in the incision which could spread to my vulnerable brain tissue that pulsed under the thin layer of skin. I desperately asked my mom if I still had my brain. She then smiled and laughed, and reassured me that they had left my brain where it was. I then looked down to my abdomen and poked my stomach, demanding to know where my skull bone was. You see, in some instances they actually sew the bone flap which is what the bone fragment is now referred to into the patient's abdomen to protect it from developing an infection from outside bacteria contamination. However, in today's medical world, hospitals that are classified tissue banks actually place bone flaps into cryo banks for preservation until they can be put back. Everyone in the room began to laugh and the nurses asking how on earth did I even know about that, and saying "oh no sweetie, we don't do that anymore." I promptly responded, "so I have a cool surgery and don't even get to have my bone in my abdomen, what a waste!" My mom proudly announced to the room that I was still here.
This exchange made everyone excited. I was still the same science nerd I had been prior to this horrible situation. There were still at least fragments of the woman I was still residing in my brain. Though my aggression became worse and Matt feared that maybe this is what I was going to be like from now on. I swore constantly, insulted everyone around me, and tried to tell everyone around me how to do their job.The ICU team had prepared my family that anger was a common reaction to people coming out of the situation I had just been in. And severe traumatic brain injuries such as the one I had experienced could often cause permanent personality changes. It was entirely possible that this would be who I was now.
My throat was in so much pain, all I wanted was something cold to drink. However since I had been intubated so long, I needed to have a swallow evaluation before they would remove my feeding tube and allow me to drink and eat on my own. As I laid there, the pain got worse. And the only cold food item that came to mind in that moment were slurpees. Why??? Don't ask me, I can probably count the amount of slurpees I've consumed in my whole life on one hand. But I kept demanding slurpees, and was told that the speech team were not in the hospital yet and I would have to wait until the morning. I responded in an annoyed and sassy tone "I find it hard to believe that you don't have anyone on call, this is a hospital!"
Remember how medical personnel are the worst patients? Yea add some mind altering drugs to some oxygen deprivation in the brain and you get a real doozy.
I experienced hallucinations in the state I was in, which added to my confusion. I believed that a random stranger offered me drugs in the elevator (confirmed by my mom that it did not happen). I also saw that the room I was in was filled with glowing fiber-optic cables, with a group of children staring at me, and that my family were purposefully delaying the removal of my feeding tube for fun and I screamed to the ceiling of my room to "stop having fun at my expense!"
I had no idea what was reality and if what was happening was real or still the nightmare I had experienced in the darkness. I asked my nurse to let me see my reflection. She didn't want to at first, but I begged. I needed to see for myself what I looked like, and to ground myself in some form of reality. I saw my bloody shaved head, and swollen and bruised face along with the tube stuck down my nose. I thought to myself "ok Myra, this is real. You are really in the hospital. You really had surgery. What is happening is not a dream." It was the drop of reality I needed. I soon realized how I had been acting and begged my nurse to forgive me, who laughed and responded in an Irish accent "If we took seriously everything people said to us in the ICU we wouldn't be here."
Now I became innately aware that I could not move properly. My left arm was limp. My left leg moved somewhat, but not in a totally controlled way. I stared at my left hand, and willed it with every ounce of energy I had to twitch my fingers. Nothing happened. It was like someone had cut the electrical wires in a circuit. I could almost feel the message "move fingers" get halted halfway down my arm. I was now a paralyzed 26 year old. As I laid in the hospital diaper in my bed I felt my whole soul die in that moment. I now had to sit in my urine and shout for help, and then have a stranger remove my clothing and sheets to change me into a fresh diaper. I was horrified. I wasn't a person anymore. I was completely helpless.
As the drugs wore off, the clarity of the situation set in, I was incapable of doing anything. I may never even walk again. I looked down and saw my rings gone, including my engagement ring. I cried out in horror that Matt had taken back the ring, that he didn't want to marry someone broken like me anymore. In less than a second I had not only him, my mom and the nurses assuring me that this was not the case and that they had been removed before surgery and in the hospital safe. The fear that he may change his mind would still linger for a long time.
And as I looked around, I realized that half of my vision was gone. There was a huge black spot right in the middle of my right eye. And whenever someone came in to do a neuro check on me, I now had no peripheral vision. I could only see something directly in front of me and my color vision was altered. Now I realized that my life may be completely over, I would never drive again, I would never work again. I could do nothing.
After emerging from Wonderland, I had a lot of trouble for months determining reality between dreams. As I think back on what I experienced during that time, everything felt so real. Every hallucination was truth. I suppose it was my truth at that time. All I truly knew at this time was that I had almost died. Doctors did not know much more than that, they could not tell me what would improve. Only that "time will tell."
My future now had a big ? in front of it.