Okay, the last post was like a brief intermission in the story telling.
Now I'll resume.
I left off going home...Okay.
Home. Leaving the hospital was simple enough. They gave me medicine to take everyday, and a pager to my mother, so she would know if a heart came.
Home was...surreal. The dynamics of living in a space where everyone is tip-toeing around an issue are very unnerving. My mom's usually rocky relationship with her shit boyfriend, Scott, was now hush hush. No one argued in front of me. My Aunt and Uncle and 4 cousins came to stay with us for a couple weeks from Nebraska.
I felt pretty stable. If you didn't know better, you'd think nothing was wrong with me. I played with my family, we set up a tent in the huge front yard and grilled out on the concrete patio. I remember my hamburger didn't have seasoning (low salt diet) and was shaped like a heart. I also remember sneaking my favorite food, pickles, when no one was looking.
On a couple of occasions, I got to go to school. I would get dropped off by my mom, and then she would pick me up at lunch. I was treated like some sort of celebrity. There was even a camera crew that showed up in the principal's office one day. They followed me around school and did an interview with me, too. I was the bees knees, the talk of the town. The sad little dying girl that everyone wanted to be a part of for a short time. Everyone is attracted to tragedy, or so it seemed.
My life went on like this for about 2 weeks. My family eventually needed to go home to their own lives and jobs. Once it settled down, and school was over for the summer, life was very routine. Wake up, eat a peanut butter and honey sandwich, take medicine, watch TV, eat dinner, sleep.
I still slept sitting almost completely upright every night. I coughed and coughed, and puked regularly because of the fluid in my lungs. My heart was three times the size it was supposed to be, so my movements and thoughts were sluggish at best.
I was a shadow of a person, and certainly not very childlike. It's pretty hard not to lose that innocence when everyone around you is whispering about your death, and you overhear your mom planning your funeral on the phone. I could see through everyone's fake kindness and I resented it.
Three weeks came and went very quickly.
The 29th of June.
That day started like any other. Routine, normal, or as normal as could be expected.
The day passed, and I got ready for bed. But I felt weird, strange, surreal. I remember feeling a calm presence.
I don't even know what that means, or if I'm explaining it correctly. I just felt...calm. My mom went to bed, and I went into my room. The lights were all off and I laid on the floor. I could see out the window of my room and I stared at the stars for the better part of an hour, then just sat in the middle of my floor, bathed in moonlight. I wasn't thinking about anything at all. My mind was completely blank, just trying to understand what I was feeling. Something was going to happen. I started thinking maybe I would die if I fell asleep, like maybe my body knew it would die tonight. So I wrote letters to my mom and my sister and put them on my dresser, and finally fell asleep.
I couldn't have slept long, and suddenly I shot up from my bed. Wide awake I looked at the alarm clock and it blinked 2:50AM. I sat in eerie silence for a few seconds, feeling really fucking creeped out.
When the phone rang from the kitchen, it scared the crap out of me. I jumped out of bed and went as fast as I could to the hallway. I was out of breath as I listened to my mom groggily answer the phone. The house was a renovated pole barn like I mentioned before, and my mom's room was the loft above the huge living room. It used to be the hay hold. Everything that was said or done in her room echoed throughout the main part of the house. So I slumped to the floor of the hallway and listened.
"Really? When?" She said. Her voice had perked up a bit. "Yes, of course, we will".
The quick conversation ended, and I heard her getting out of bed so I got up and went back to my room. I tried my best to look like I had just been woken by the phone.
She came in my room expecting me to be asleep still. She was crying when she told me they had a heart for me, so we had to get our things together now and head to the hospital. We had time for a quick embrace before it all started.
I went into a daze. I was feeling every single emotion possible all at once and my brain simply shut down. I was a zombie.
Fear, impossible debilitating fear was the first emotion I remember feeling. I was going to die. There is no freaking way they can just take out my heart and I'll survive. I'll be a different person. I'll have ugly scars. My boobs! I have to ask the doctor if my boobs will be maimed in the process. I have to stay strong so I don't freak out my mom. I can't look at her. I can't look at anyone. I have to stay strong. If I die, oh well. Oh no, I don't want to die. I'm only 11 years old! Why is this happening to me? Why can't this all just be a dream? Why can't I wake up?!
This went on in my head the whole time we got ready, which wasn't very involved. We had already packed bags and they were already by the door. We only had to wake up my sister, put on clothes and drive away from my house. I ripped up the goodbye letters I had written my family, and tossed them under my bed before we got in the car. Scott, my mother's boyfriend, was there and actually was the one who drove the hour to the hospital.
At this point, I was numb. I was feeling overwhelmed. I was anxious to get to the hospital, what if we were late? Why wasn't he speeding (which he probably was)? Weaving in and out of traffic? My mom tried to distract me by having me call family and tell them. I called my Dad, and he said he and Amy (momma)were on their way. My grandma and grandpa, aunts uncles cousins friends were all called and on their way as soon as they could leave.
When Scott stopped to get gas I found myself feeling annoyed and irritated, but unable to express anything except being obviously dumbfounded. The people on their way to work or going home after partying at 3 in the morning had no idea. They had no clue that I could be a few hours from dying. They had no idea that I was going to have my heart removed from my body. They didn't know, and they weren't affected by the outcome. Life lessons.
I stared straight ahead the rest of the trip. I stared straight ahead as we pulled up to the hospital and I stared straight ahead as my mom helped me into a wheelchair and as Scott pushed me the old familiar way to the children's floor.
We got to the floor, and apparently we were the only ones in a hurry. No one was there to greet us, and we had to walk up to the nurses station to remind them what we were there for.
I got the worst nurse of all time. I've blocked out that bitch's name from my memory. Grrrr.
She was an old lady, probably in her mid 60's. She had a limp when she walked, like her hip was higher on one side. And her voice was high pitched and grating. She took pleasure in making patient's lives harder. She liked to torture us. Me and Sidney used to make fun of her behind her back, and we dreaded when she was assigned to us.
Anyway, I didn't care. I was actually nice to her, even though she was being a wench and asking my mom why she was crying. "It's fine, she's getting a heart, you should be happy". My mom wanted to punch her. She didn't.
The doctor's finally came in an hour later. They informed us that the brain dead donor's family had just pulled the plug a few hours away. The heart had to be harvested and examined, then confirmed and flown to us. This would all take a while, so I should try to get some rest.
My family sat with me while I was changed into a hospital gown (prom dress!) and I started to calm down a bit. I had a little more time to compose myself instead of being thrown into surgery like I had imagined it would be.
A couple hours passed, and I was actually conversing with my sister. We didn't talk about my health, just about school or friends or whatever...I was avoiding the issue.
At 8:00 in the morning, I had the first round of immunosuppressants shoved down my throat...literally. They handed me a cup full of the nasty little skunk-smelling gray liquid gel caps. It was Cyclosporine
And nurse horrorpants was there to make sure I took every pill, her favorite game. She sat in front of me like I was a baby, and every pill I ate, she made me stick out my tongue. I was humiliated and sickened. I downed what must have been 20 of the nasty things before I started feeling nauseous. I needed to puke, but the nurse wouldn't let me move. I finally had to physically push her out of the way to get to the toilet in time to puke up all the pills I had just taken. Doctors started coming in, and they said the heart was en route to us.
"See, you have to take these, there's not much time left" the nurse pressured me. She was acting like I was doing it on purpose!
"You'll have to take these everyday for the rest of your life after you get out of surgery, and you can't puke them up then!"
The same thing happened 3 more times and I was getting exhausted. Swallowing all the pills, puking. Swallowing all the pills, puking, Swallowing all...the pills...puking.
Finally a doctor suggested giving me the oral solution and though it was gross, it worked and I didn't puke it up. My immune system would start shutting down in anticipation of the new heart.
I fell asleep for a short time. It couldn't have been more than a half hour before I was woken up. "We're moving you up to the surgery waiting room".
I got into a bed and my family followed me in the elevator to the 6th floor. I was rolled into a large room that had beds lining it. Only curtains separated the beds. There was a man asleep across the room from me, and a lady a few beds down to my right. They were waiting for some kind of surgery, too.
At this point they must have given me some kind of medicine to make me relax. I was pretty loopy. I joked around with the nurses, and my family tried to keep me calm. I felt anxious and started shaking badly. The doctor told me it was the immunosuppressants kicking in. I was worried about how it would be taking this medicine everyday for the rest of my life. If I lived.
My surgeon came out to meet us, and it was the first time I'd ever seen him. I explained to him that I was worried about my first time with general anesthesia, I didn't want it to be like in the movies when they told you it was just oxygen and then you wake up 3 hours later. I shared with him my fear of the last thing I might ever hear in my life being a lie. "Tell me honestly what you're doing, when you're doing it please." He agreed.
It was time.
I was so anxious. I can feel it now. I was overwhelmed and anxious and I could feel everyone else's anxiety, too. I experienced everyone's fears as strongly as my own. I was overcome by it all. I went numb again. My mom started crying, and she took my stuffed duck from my bed as they put the blue stretchy hat over my hair. The nurse made some joke about how it was the newest fashion statement and gestured to her own hat as a sign of solidarity. She was nice.
I assured and reassured my mother as she started freaking out. At the entrance to the surgery hallway, she kissed my head and we said I love you. As the doors swung shut, I heard her yelling at Scott and saw him grab her around the waist.
I was completely alone now.
Alone as I was wheeled down the metal hallway. Everything was stainless steel and white. It was freezing cold and smelled like rubbing alcohol.
The bed hit the two swinging doors into the surgery suite. It was blindingly bright. There must have been 20 people in the room. Nurses, doctors, techs.
There was a table in the middle of the room and I had to scoot across to it from my bed. It was hard metal and cold. A nurse came up to me and bent over my head. She told me to turn to the table on the right. She gestured at a red and white drink cooler. "Your new heart is in that cooler!" and smiled. I was disgusted, I think. I smiled, but what I noticed more than the cooler with a dead girl's fresh heart in it, was the array of scary looking medical equipment. There were hundreds, hundreds, of tongs, scalpels, saws, scissors, pans, tubes, catheters and a chest separator that really freaked me out.
And this:
I was pretty spooked. All of a sudden people started going really fast. Everyone was rushing around, and it did nothing to help me feel any calmer. No one was talking to me, and one guy kept asking why I was still awake, which made me feel completely invisible. The same guy took my clothes off without looking at my face. I was a body to him. Just a body that he had gone to school to fix. Like a mechanic and a broken car.
He was rough as he tugged at my arms, and I was looking somewhere else entirely when I felt a sharp stick in my left wrist. I didn't jerk my hand away luckily for him, but he gave me no warning and I felt myself getting scared and I started to cry. He didn't acknowledge me, and said "we need to get her asleep asap". The vein blew and he apologized and said he'd wait to do it again when I was asleep.
I was completely naked in front of all the people in the room when they started scrubbing my chest with orange stinky betadine cleanser/disinfectant.
"We're going to give you some medicine now that will make you feel calmer" I heard from...somewhere. I felt myself getting calmer, though.
They strapped my legs and arms down with restraints, and I asked my doctor to come over to me. I asked him to come down so I could speak to him in private, and took that opportunity to ask him if my boobs would be affected. Hahaha...he laughed but assured me I would be okay, and he would not mess up my breasts.
Then they tried to put the oxygen mask on me, but I turned my head away from it. I told them again that I didn't want the medicine without warning. They agreed, and the mask was put on my face. There was no warning, and I felt myself slipping...somewhere between sleep and death. It was 12:00pm on June 30th, 1999 when I died the first time. And it would be that same day when I was reborn.
Whew. That was a long one.
