My Rare Disease Part 7: Tests
At night, the nurses took blood samples to monitor my condition. They came in every couple of hours, beginning at 11:00 p.m., each time poking into a new or freshly healed hole with their needles, or taking my blood pressure, or checking my heart rate, or all of the above. At least my blood was flowing freely thanks to the IV, for which they also had to stab open a new puncture wound periodically. Every morning, a doctor came to update me on my condition and to see how I was doing. “You’re ingesting the equivalent of this bottle,” he’d profess, “and you’re eliminating twice that amount.” There would be a pause.
I once tried to describe what was happening by telling my doctor that I felt best in the morning and progressively worse throughout the day until the evening when I would feel my absolute worst. “I feel like my food is poisoning me,” I once admitted, knowing it was outside the realm of possibility.
I was desperate and starving. I searched for food commercials on TV and salivated over the Pizza Hut pizza or the double Whopper with cheese. When my doctor asked what I wanted to do when I got out of the hospital, I said, “I want to eat a bacon double cheeseburger.”
“You don’t eat bacon double cheeseburgers,” he told me.
My mom started bringing me home-cooked meals. She wasn’t supposed to since they were measuring everything that came in and went out of me twenty-four hours a day. But I wasn’t getting any better, and the hospital food was barely identifiable, let alone edible. She could hardly watch my attempts to eat it.
Every few days I was allowed to walk down the hall for a shower. The nurses helped me in the shower so my IV didn’t get wet. When I got back to the room, sometimes my dad would dry my hair like he did when I was a little girl with the setting on low, slowly combing out the tangles until my chestnut-colored hair, which over the past few years had developed golden highlights, hung in loose waves around my face and over my shoulders. Devoid of sunlight for months, my skin had taken on a translucent quality, like skim milk, reminding me of the photograph I’d seen of myself as a baby with the addition of a smattering of freckles across my cheeks and nose. And my eyes, now ocean-gray, rather than blue, once again resembled the glass marble eyes of my childhood.
After three days in the hospital, I had some upper GI tests, and then a CAT scan. As I sat in the wheelchair, awaiting my instructions, those ocean-gray eyes must have looked wide and terrified. The technician made small talk to set my mind at ease. She asked how old I was.
“Thirty,” I told her, and her face went blank.
“I would have guessed eighteen,” she said. Then she helped me out of the wheelchair to begin the procedures.
The stomach cramps hit me shortly after the CAT scan. I was sitting in my wheelchair, alone in the hallway and doubled over in pain when my dad came in for one of his visits. I knew how it must have looked—his only daughter doubled over in a wheelchair, dressed in only a hospital gown and attached to an IV, all skin and bones and hurt. I wished I could pretend it didn’t hurt. Dad wheeled me back to my room and by the time he left, the cramps had mercifully subsided. I watched Animal Planet on TV.
That night my mother stayed with me later than usual. One of the tests was supposed to measure the length of time it took for substances to pass through my digestive system. Perhaps they were looking for blockage. I couldn’t be sure. I didn’t have the capacity to process all the tests and their various functions, whether or not anyone ever told me. What I did know was that I was not allowed to eat food until whatever fluids they’d given me to drink that morning reached a certain point in my system. Those fluids were all I’d ingested all day.
Apparently, I have the digestive system of a python because it was 11:00 p.m. before I finally received word that I could eat dinner. I was weary from tests and feeble from lack of food, but still, the elimination continued. I had just maneuvered my IV stand into the bathroom to use the toilet hat facility when I heard the nurse’s excited voice booming on the other side of the door.
“She’s in the bathroom,” my mother said, and I assumed the nurse would come back later. Almost before I’d finished the thought, two quick knocks barely prefaced the nurse bursting through the bathroom door with a hearty greeting of “You can eat, you can eat! What do you want for dinner?”
I looked up at her from my seated position. My mouth was no doubt open, but I found myself unable to utter a single word.
“You just think about it, honey, and I’ll come right back!” she said.
I did appreciate the nurse’s enthusiasm. I just was unable to show it. To its credit, my ability to show appreciation hung on a lot longer than my dignity had. I probably felt a tinge of guilt when I told the nurse, upon her return, that I wasn’t hungry anymore and I just wanted to go to sleep. That’s when I realized I wasn’t angry or frustrated or even embarrassed by her breach of what I’d previously considered to be my privacy. Where was my pride? I wondered, sinking heavily into bed amidst the familiar sound of plastic rustling under the sheets.