After high school, I chased normalcy; after spending the last five years being under the microscope of being known as the sick and chronically absent girl, I yearned to build an identity outside of disease. I walked a fine line of knowing my limitations, yet unwilling to adhere to them. In some ways, though, I think my stubbornness eventually saved me.
One of my childhood friends introduced me to a job at a local country club. I could choose my own hours, the view was nice, and the company even better. I was on Methotrexate, and it seemed to hold me over just enough to function (for a time); I was still in pain and inflamed, but I had workarounds that allowed me to get by: on days that I had to work, I iced my legs on and off for at least an hour before leaving the house and kept them elevated for most of the day. I wanted so badly to have a normal college experience of going to class and working and not being known for my disease. I did everything I could to hide it; my rule was that people only found out about my disease on a need to know basis, like I was in some Robert DiNero movie, hiding my involvement in the CIA, only bringing certain people into my little circle of trust.
Soon enough, I had to accept that would not be my reality. Most college kids would love to not have to work, but for me, not being able to work was a reminder that my body was failing me and no matter how much I chased normalcy and youth, it constantly reminded me I wouldn’t be able to have it.
While working a wedding one night, my ankle swelled and turned my foot inward. My shoe suddenly felt two sizes too small; I hobbled from the tables I was working to the bar that wasn’t being used that night, sat down, took off my shoe and sock, tried my best to press the flat part of my foot against the cold floor, and prayed that the swelling would go down enough to let me finish my night. The president of the country club, an older gentleman, was making the rounds and found me alone there. We made eye contact without saying a word, and I watched his heart sink in his eyes. It looked like he was holding his breath as he asked me what was going on. I told him and he sat down across from me, lifting my foot into his hands gently, wrapping it in a cold cloth and then held it in place. He asked if I minded if he quietly prayed, and though I wasn’t religious, I got choked up and nodded okay.
He sat there with me for about twenty minutes until my manager came up the back stairs. I wanted to sink into my seat — I knew she would not be happy seeing me like that. She knew I had Crohn’s, and that I had been struggling, but in her mind, she had an event to run and I wasn’t holding my weight.
That ended up being my last night working there.
After my body somewhat calmed down, I worked at the infant room of a local daycare. I was intent on being a working college student. It was still a physical job, but not as physically demanding, or so I thought. I loved working with the kids; seeing them hit such monumental milestones in their first eighteen months overjoyed me. Like clockwork, I soon experienced debilitating digestive symptoms that made me appreciate that the bathroom was right across from the infant room. For over a month, I lived on saltines and protein shakes and continued to chase normalcy.
As soon as my colon seemed to calm down, my right leg filled from my ankle to the top of my thigh, and within a matter of 24 hours, I was suddenly immobile. I couldn’t bear weight on that leg for more than a month; eventually, I ended up with a blood clot from the immobility, and then experienced cardiac involvement and shortness of breath that landed me in the hospital for nearly two weeks. The day they admitted me, my resting heart rate was near 200 and even while laying down, I couldn’t catch my breath. I had my doctor’s cell phone number for emergencies and I felt guilty calling him on a Saturday, but Sean urged me to. He was both my primary care doctor as well as my vascular specialist, and I still see him for my primary care to this day — he is fantastic and the best doctor I have ever had the joy to be taken care of by. He listened and quickly told me to meet him at the emergency room; his first thought was that it could be a pulmonary embolism due to the blood clot in my leg.
It ended up not being a pulmonary embolism, but they couldn’t figure out what the problem was.
I have always felt more comfortable in hospitals than almost anywhere else. It’s familiar. The nurses were my caretakers and the doctors were extensions of my parents. It felt like home — I felt safe there. Hospital beds are immensely comfortable and being surrounded by people who knew what I was going through is even more comforting. I didn’t feel as abnormal in the hospital; I felt understood.
My leg was so swollen that it was tight and hot and my skin couldn’t possibly stretch anymore. The morphine took the edge off but not the pain away; it just made me not give a shit.
The doctor drained my leg three times in a matter of a couple days. It kept filling back up. I was on an IV of Solumedrol to relieve inflammation, but it was hardly touching mine. When I saw the doctor pick up a huge needle attached to a huge vile, I panicked; even now, I can still remember what that felt like when the needle pierced into my leg and the shooting pains of drawing the fluid out. A nurse had to hold me down while my mom, dad, and Sean held my hands.
Parents and spouses shouldn’t have to see that.
I couldn’t help but notice I was the youngest person in that wing of that hospital. Older patients would stroll by and they’d see me and stop in my door and like clockwork say, “you’re far too young to be here!” And I’d smile and say, “I know,” and they’d pause a second, waiting for an explanation I didn’t have the energy to give. One day I counted eight people that stopped to remind me how odd it is for someone so young to be in the cardiac wing. I noticed a difference in the interactions though; young people (I’m talking fifty and younger) tended to uncomfortably smile and say something well-intentioned but awkward, then go on their merry way, while older people have a different tone to their disbelief, a tone of despair coupled with surprise. I saw the memories of themselves at my age flashing behind their eyes. It didn’t bother me as much when they stop because I saw me in them.
During the day, I mostly kept my sense of humor intact. At night, after everyone left, I cried so hard that my heart rate, already elevated, would go through the roof even more. The night nurse would run in when my heart monitor would beep, worried she’d find me in some terrible cardiac situation, only to find a kid very confused at why life was turning out this way.
After almost two weeks, I began to respond to the IV steroids and my inflammation slowly receded from my leg. The physical therapist wanted me to walk that day with the use of a walker.
I felt diminished as he carried it into the room. My eyes narrowed; I glared at it, the very tool that would help me regain balance and strength to walk was also detrimental to my already crumbling self-worth.
I carefully helped my legs off of the bed, not to dangle over the sides for too long as the pain shot up from my feet to my hips, and he helped me up onto the walker. I went up and down the hall twice, nearly falling a handful of times—the only reason I didn’t was because the PT was walking directly behind me, arms straight as an arrow, to each of my sides, an inch under my armpits to catch me. My legs felt foreign; each step was more difficult than the last and in that moment, I couldn’t decide if I was angry enough to power through it, or sad enough to give up.
Other patients and hospital staff walked by me and gave me the all-too-familiar sympathetic expression.
I tried not to look at them and just focus on my task at hand. I wished they’d just ignore me.
I didn’t let my PT or the nurses rooting me on see the humiliation or the tears I was forcing into submission.
I smiled, faintly, in gratitude for their support.
We did that for three days. Up and down the halls and eventually practicing walking up and down stairs.
After the physical therapist left on the third day, I felt relief to have a moment to myself and wanted to feel myself walk without anyone looking at me. I carefully lifted my legs off of the bed and pulled myself up with the walker. Slowly, and carefully, I guided the walker over to the window and looked out at life happening out there and cried because it was happening and I was only a spectator of it — and I feared that was all I’d ever be. I was tired of missing out on it; I was tired of trying to partake in it only to find out I could not. I watched the parking lot below me lined with trees and watched people go about their everyday life and my hands shook as they gripped the walker.