I left off with me and nurse Angie sitting on my bed in ICU crying in an embrace. Well, the story doesn't get much more peppy from there on out.
Somehow, the rest of that day I managed to have all to myself. I said I was tired, but really I was just emotionally shutting down. There was a small radio set up next to the wall on the right side of my bed, so I put on the Sarah McLachlan song "Angel" on repeat and laid on my stomach for several hours, crying and trying to come to some sort of mental agreement with myself about how I felt towards my imminent death.
That was an intense day, but I didn't accomplish much. I came out of that Sarah McLachlan experience more emotionally numb than ever before. I remember thinking I needed to be strong for my family, that if I let them know how much everything was bothering me, they would be devastated. They needed to believe I was coping on my own.
Otherwise, I might push them away by asking too much from them and I certainly didn't want that to happen, no matter how unlikely it was.
The hospital stay got worse after that. My health deteriorated. I wasted away to skin and bones, and my normal resting heart rate was 160bpm. My aunt signed me up for make-a-wish and I was accepted, but was too sick to have it fulfilled until after my transplant.
I laid in bed for so long that my muscles atrophied.
One day, nurse Michelle was told to take me on a walk. I remember my little sister being there, and as I walked down the corridor with 10 IV bags hanging from a pole, oxygen in my nose, and two nurses holding my arms upright so I didn't collapse, I felt the first twinge of guilt about my sister. Guilt for stealing the innocence of her childhood with the abrupt loss of mine. From not allowing her any attention because I couldn't help but consume our adult's energy supply completely. I felt like a joy vampire, one who lives off of consuming everyone's love and happiness with my tragedy, so they have none left to give to others.
So then I compensated by being ridiculously accommodating and impossibly positive and happy. Killing my emotions to cover my own fear.
How was I? FINE
Did I need anything? NO
Later that week, nurse Angie came into my room. She basically explained to me that unless I got a transplant soon, very very soon, I would die. She very bluntly asked me if I wanted to die in the hospital or in my home.
I dryly said my home.
The next few days were spent moving me to the step-down unit where I was to stay for a week, then go home...to die.
I was depressed when I got there, and didn't have any interest in seeing anyone anymore. Most of my extended family had left to go back to their respective states, until I went home, when they would return to hold a vigil and be with me when I died.
I stayed like this for a day or so, until I decided to go for a walk down the hall with my nurse. I hadn't been to that unit since the very first night and I wanted to explore the winding hallways and find that scary treatment room. I wanted to see if that place held any puzzle pieces I might be missing to make the whole ordeal fit together in my mind.
What I found was a thousand times better than any puzzle piece.
I asked to walk by the room I was in that first night. Room 15. As we approached I saw a familiar sight. A sign on the door. A passive aggressive note about staying out of the room until after 9:00am. No matter what.
I asked if the girl, Sidney, was still there, and my suspicions were confirmed.
The next day, I felt a little better. I asked to walk around on my own, and was allowed to. I walked past her room, but no luck. The next day I felt even better, I even dressed (for the first time in 5 weeks) in my own clothes instead of the no-butt hospital gown that I'd come to so lovingly refer to as my "prom dress". My green tank top slid off my shoulders and exposed the sharp collar bones above my sternum. My jeans had to be held up by a string because I didn't have a belt, and the wires and leads from the heart monitor were sticking out everywhere. I looked scrappy, to say the least, but I felt something I hadn't in a while...hope.
I went to her room again that day, and this time she was there. Standing in front of the mirror, blow drying her hair and chewing gum. She saw me in the mirror and smiled, then shut off the dryer and turned to me. "Hey, you're that one girl with the crap heart, right?" I nodded, a bit shocked at her bold language. Until then my "condition" had been but a whisper on everyone's lips, something they were trying to hide from me, a rumor that maybe wouldn't be true if only they never said it aloud. The proverbial Voldemort of my life. The disease that shall not be named...
She asked what they did to me, and what was my diagnosis. I explained everything, eventually obviously becoming depressed and saying I was going to die soon, and that I was going home the next week to do just that.
She cocked her head and looked at me with a mix of sympathy and annoyance.
And she uttered the most helpful words anyone had ever before or since said to me.
"We all gotta croak sometime" and with that she turned back to the mirror and started the blow dryer again, never losing eye contact with me.
THAT's all for tonight.
Update on my current hospital situation: nothing has happened because it's the weekend and no one does anything during the weekend in hospitals. I have had really awesome nurses so far this time.
I know there is something wrong with my body. I feel sick. Nausea, headaches, NO appetite, etc. No fevers since I've been here...but then again they've only taken it twice since last night so who can be so sure?
My port feels poopy too. And I have a migraine.
But on the bright side, I had 3 visitors today. No Ryan. But I got a Koren and Grant.
Koren brought me a rose, balloon, sparkly spray, and the physical touching I needed so desperately. She petted my hair and rubbed my feet. Her presence is so calming to me. I really like it. Somehow she makes me feel safe, loved, and cared for just by being around.
Then, BECCA came to see me. She just got back from Brazil on Thursday, and she brought me food that was edible!! And ginger tea, and cake. I love that girl, and I missed her a shit ton while she was gone. <3
Anyway. I'll keep ya'll updated on what's the dealio.
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