My First Disabled Holiday
Christmas carols. Over-sized sweaters. My wheelchair.
I remember my first holiday season after I became disabled. All of our Christmas decorations twinkling, the smell of homemade apple pie and bread rolls filling the air, cozy scarfs loosely around our necks. I was eager to settle into a hot cup of cocoa and let the creamy chocolate wash away my worries and the majestic sounds of Mannheim Steamroller dance my memories back to previous holidays when I was not “complicated.” I was quite content hiding in my corner, away from the cheerful stories of recent ski trips, plans for the New Year and how great little Suzy was doing at her first job. No matter how I tried to blend into the wall behind me, I kept catching the sideway glances in my direction. I tried not to see and keep my nose close to the warmth of my mug, but with each white flash of their eyes my heart sunk lower.
Christmas tree. Crackling fire. My semi-permanent IV line.
I gazed into my nearly empty mug, realizing I had not even tasted half the cocoa and that I was swiftly running out of my one prop to make me look semi-busy. I no longer felt like “Caylee, Most Likely to Succeed” or “Caylee, on the fast track to success.” I used to be so confident, so proud to tell of my latest achievement and goals. I began to fear anyone asking me the dreaded, “So, what’s new with you?” How do I respond to that? “Um, well, cousin I haven’t seen in three years, I am proud to say one of my 20 lab results came back normal. So, victory lap for that. Except, you know, I won’t be doing any of those due to this wheelchair you see me sitting in. Why am I in a wheelchair? Well, funny you should ask, I honestly have no clue… Doctors just say I’m an ‘anomaly.’” And I would likely eloquently trail off in incoherent mumbles. Hm… nope. I think I’ll just continue doing my best to become one with this wallpaper. Maybe if I pretend to be having a great conversation with myself, no one will feel the need to come over…
Christmas presents. Winter boots. My broken body.
Through the attempts to hide in the background, I realized I had slid down in my wheelchair. With my mug teetering against the handle of my chair and clamped between my thumb and forefinger, I used the heels of my hands to give myself a swift heave up and back into the chair. I moved only about an inch, but I was quite proud. I did not spill a drop of cocoa, and I also managed to make my my body move when I told it to! These days, it seems to have its own ideas of when to move. As I settled into my chair, I looked around to see if anyone had noticed that small but huge victory for me. Forget the promotion you just got at work, didn’t you see me move back in my chair? Like, seriously, time for a standing ovation! As I mentally patted myself on the back, my body decided it was time for one of those involuntary movements. Like someone grabbed my forearm, my arm spasmed with a jolt and my last sip of cocoa went all over my red satin blouse. As I gazed down at my third soiled piece of clothing this week, an involuntarily giggle erupted from my belly. I couldn’t stop the grin that spread from one ear to the other. I tackled a great feat: I managed to not spill a drop in a move that deserved at least a participation award, but then I spilled by doing absolutely nothing.
Christmas ornaments. Cinnamon and nutmeg. Me…
And then it just hit me: I am still me. I just lost the management internship, my modeling career has gone swiftly down the drain and I am struggling to stay in school due to all of my hospital stays. But I am not defined by my internship, my modeling, my school. Nor am I defined by this wheelchair, this IV line, this body. My abrupt giggle gained the attention of at least four of my extended family members, but I realized I didn’t care. In fact, I was ready to talk about “what’s new with me.”
So, what is new with me? Well, I am glad you asked. I am proud to say I am still a fighter and I still know how to find humor in my everyday life. Everything in our life is based on our perception, on how we choose to view things. Yes, in our society, people are often defined by their careers, their income level, their status. But I realize this is my life. And I choose to define myself by my heart, my sense of humor and my personality.
So break conformity and have a wonderful holiday season!
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