My Wheel LifeThe stories of how I got this way, and the motivations that keep me rolling.
Ten Days (Part 1)
After spewing chunks up on the CAT scan table, I blacked out for three days, like literally saw the color black. Though many people surrounded me during this time, friends, family and hospital workers, I cannot recall seeing anyone or any thing during those days. I do remember hearing voices, and could also sense love and friendship upon me. Two other things I recall during this particular time was the very attentive nurse who took excellent care of me, and the ice chips she gave to keep me from becoming dehydrated. The nurse, which to this day I still don’t know her name or have a vision of what she looks like, slowly rubbed the ice chips on my lips and the inside of my gums on a routine basis. I imagine I asked for the service, although I’m also sure I didn’t have to ask at all. The feeling of ice on my dry, cracked lips was an impression I’ll never forget, and a moment too difficult to describe. I can at least say I now better understand how essential water is to the human body.
During my “black out” the doctors in charge of my well being noted the traction wasn’t working and consequently opted to perform an operation on my spinal column to realign my vertebras. The neurologist cut an incision from the back of my head, about three inches above my hairline, to below my shoulders and in between my scapulas. While I lied open on the table, completely vulnerable and exposed for the world to see, my vertebrae were somehow realigned and put back to their appropriate places using rods, some wires, and also some bone marrow from my hip. Using those materials my spine was fused into one long, stronger faux vertebra. After the five-hour surgery, aesthetically and from the outside, I appeared perfectly normal. Internally, my nerves were still a swollen, squishy mess, like the innards of rotten banana.
Unlike the time my eyes shot wide open in the CAT scan machine, my return to reality came much slower and much more methodically. For example, it took some time to realize I was now living in a hospital. The room I eventually awoke in was overflowing with helium GET WELL balloons, stuffed animals and flower arrangements. The walls were not white and stale, like I pictured many other hospital rooms. My walls were colorful and wallpapered with Hallmark cards and homemade posters. Someone, most likely my mother I eventually decided, had gone to great lengths to turn my small hospital room into a warm, friendly temporary home. While being a nice gesture, it was also a reminder that I had been there and away from home for sometime now.
I could barely move my head thanks to a stiff, foam neck brace that hugged my neck like a boa constrictor. The brace was uncomfortable, and often awkwardly in the way when I looked down towards my toes, or to either side of the bed. Curious of what I was capable of, I tried to move my limbs and was unsuccessful. This scared me. Too much time had passed to still blame Adrenaline for my numbness and lack of movement.
Lying on my back, my body felt heavy, as if buried under a large stack of neatly piled bricks. I felt tired and was still drowsy from all the medications that had unexpectedly been shoved into my systems. I was connected to a machine via an IV in my left arm. I had a device on my finger that donned a red light, a similar scene to the extra-terrestrial from the movie E.T. My bed roared every fifteen minutes. I was told the sound stemmed from air moving throughout the bed because I now was high risk for bedsores. If I was high risk for bedsores, than I wasn’t going to be moving anytime soon. My future was starting to piece itself together. But first, I wanted to know what else had happened since the dreaded CAT scan.
After the surgery, I spent two days in ICU strapped to a rotating bed, a mattress that literally tilted from side to side on a timer. Some one had told my mother, who was now informing me, it was crucial my body move and I be turned as much as possible after surgery. There was a long list of medical reasons why—blood clots, pressure sores, stabilizing blood pressure and so on. Still, I had no idea I was paralyzed.
In the case that I was as incoherent as I appeared, my very thoughtful aunt bought a blank journal, brought it to my room, and encouraged those that visited to sign it and/or write down their thoughts. There were times visitors were not allowed to see me, thanks to tests and procedures. There were also times I was sent out of the room. But mostly I think she bought the book because I appeared to be sleeping at all times, and she didn’t want me to miss out on all the love being displayed in front of me.
It was a brilliant idea, the journal. From it I discovered over thirty people had stopped by and visited me in the ICU. It confirmed the feelings I had of being surrounded by people for the past two days. I was hearing the voices of loved ones, not just in a black hole, dreaming.
During my mini mental vacation, my parents also had signed me up for a worldwide experiment and research project involving a drug called Sygen. The IV in my arm was actually not an IV at all. It was something called a PIC line, which I was told was much different than a normal IV. A PIC line is inserted like an IV, except it comes with a longer catheter that ultimately ends up being shoved up close to the heart. PIC lines are used for patients that need IV’s for a long period of time, or for the daily insertion of drugs. Now that my surgery was over, I no longer needed an IV. My PIC line was for the experimental drug called Sygen.
“I wanted to try anything that could fix you,” my mom later explained. “When the doctor presented the Sygen option, we went online, researched it and then decided it was worth a shot. We had nothing to lose.”
“What does it do?” I asked.
“They’re not sure. That’s why it’s being tested. The hope is it returns your function by increasing cell re-growth and repair, or something like that” she replied. “We had 48-hours to make the decision.”
I stared at my arm and looked at the needle shoved into it. At 20-years-old I had just started becoming comfortable with making my own decisions and I didn’t exactly know how to feel about my parent’s most recent decision.
“So what do I have to do?” I asked.
“You don’t have to do anything. The drug just goes through the IV everyday, for the next 50 something days.”
At the time, 50 days seemed like a long commitment. Was this how long my hospital stay would last?
“Okay,” I answered.
“Don’t be mad,” my mother said. She must have sensed my confusion of emotions. “It seemed like the best thing to do. What if it fixes you?”
What if it did fix me? I thought. Then it would be the right decision. But what were the side effects of Sygen? What came to mind immediately was my eggs. How would Sygen effect my eggs? By the age of sixteen, I had already visited the radiologist more than most senior citizens thanks to having a severe case of scoliosis that eventually needed surgery. But then, in this condition, I didn’t know if I could have children at all. I was having a hard enough time loving myself. Did I even want children? I didn’t know. Not having the option, however, certainly captured my attention and brought the issue to the forefront.
My feet, I discovered, were stuffed into large, gray boots. The braces looked something like a Transformer would wear, except based on my knowledge machines don’t need soft insides. These boots were lined with sheep’s wool, which was necessary to prevent sores, a subject that came up many times during those first few days of consciousness and something I’d eventually have to be cautious of for my life time. The boots were also needed to prevent an issue called drop foot, where the Achilles collapses and the foot loses its strength and walking position.
There were tests. And then there were many, many more tests. It seemed like I was always being taken away for tests—a CAT scan, an MRI, an X-Ray, a whatcha-ma-call-it and then a thingy-ma-bobber. After a while the names of the tests all blended together and I stopped asking what kind of tests was happening. It wasn’t like it mattered. I never learned the test results or even knew why I needed them in the first place. I just succumbed to being taking away. My body was no longer something private; it was a science project available for public evaluation and scrutiny.
It was a doctor that told me I was paralyzed, a decision I imagine my family and the medical caregivers probably agreed upon while I was out for the count. In a methodical way, he explained that the nerves in my spinal cord had been damaged beyond repair. The surgery was not completed to “help” or “save” me from any more problems; it was performed in order to prevent any more damage.
“I don’t think you will ever walk again,” he stated bluntly. “But miracles can and do happen.”
I was heavily drugged but took in what he said with caution. My first thought was something like this: Of course I will walk again. I’m an athlete.
Tune in next Tuesday, March 26 for Ten Days (Part 2).