Wednesday, February 22, 2017

A Christmas Wheelchair: Tinsel & Bows

      I have always had a very rocky relationship with the idea of using a wheelchair. One piece of medical equipment completely converts me from a person with an invisible disease to a person with a very obvious disease, and the way I am perceived by strangers changes in a heartbeat. As a general rule, I would rather limp at a mile an hour to my destination than succumb to the wheelchair. The device feels like a pathway to the demise of any ounce of independence I have managed to retain over the past six years.

      During my sophomore year of high school, flares in my hips, knees, and ankles made ambulating around the school without a wheelchair impossible on some days. I finally gave in, bringing the electric red transport chair with me, and two generous friends kindly wheeled me between my furthest classes, Emily and Josh. What I thought was a terrible situation for everyone involved ended up leading to nice conversations and funny moments with these two, and to this day I still laugh thinking back to some of the humorous moments we shared. Emily and I used to sing as we went, and whenever we had fire drills Josh sprinted through the building pushing my wheelchair to try to get out through the front door, the only path that did not require stairs, before the hallway doors closed and locked on us.

      During the month of December, I decided that we needed to make use of the red color of the wheelchair by decorating it for Christmas. With the permission of one of my teachers, we threw a mini holiday party in his classroom during our lunch break, complete with cookies that I baked for everyone and more decorations than could possibly fit on one chair. Several friends helped me wrap my wheelchair in tinsel, secure Hanukkah stickers on the fabric, and add a few bows and bells tied on with ribbon. We then staged a frantic clean-up effort when we realized how much glitter was on the floor in an attempt to return the space to its normal state before my teacher returned from lunch duty, but if you have any prior experiences with glitter you have probably already guessed that this effort was futile. When our teacher returned to his newly glittered room after a few time-consuming distractions that we strategically set up to buy ourselves more time, I observed closely as his eyes scanned the tiny strips of tinsel scattered across the center of the classroom, but he assured me that everything would be fine and not to worry about it. At the time this reaction perplexed me, but looking back on it now, I think he was being intentionally gentle given my fragile state.

      For the rest of the month as Emily and Josh pushed me around our high school I was happy to assume that everyone was staring at the holiday decorations rather than trying to deduce a diagnosis by staring at my legs. Emily and I sang Christmas carols as we went, and some days we amped up our moving holiday display with Santa hats, holiday sweaters, and themed makeup. Even though I was using a wheelchair, a dreaded concept in my world, I was content.

     Outside of that December, my obnoxious stubbornness led me to continuously refuse the use of my wheelchair, even when my lower joints felt like they were crumbling. "Just use the wheelchair, Rachel," my teachers would gently insist, compassionately trying their best to be helpful in a situation that I am confident no one prepared them for. But to me, "just" seemed like a poor word choice; it was certainly not "just" a wheelchair to me, and using a wheelchair wasn't "just" something people do, at least in my mind. To me, my wheelchair was defeat. It was losing. It was a symbol of failure.

      I am only about four weeks into the spring semester, but I already feel as though I have lived a lifetime between mid-January and today. I feel at least ten years older now than I did starting college. Perhaps it is the medications, perhaps it is the additional pain, perhaps it is the absolute exhaustion of my body, or perhaps it is just the experience of being so sick and so far from home, but I often find myself thinking back to singing carols with Emily as she pushed me from chorus to my AP Government class and the many conversations that we shared during these six minute time increments. I realize now that the use of my wheelchair sophomore year brought me so much closer to her, and we shared so many moments of joy and laughter because of it.

     While I do not foresee ever being completely comfortable with using my wheelchair, the concept has become much more acceptable to me. Maybe I have quit fighting? I don't know. Battling arthritis seems admirable but far too exhausting at the moment. I'd rather focus on surviving it.

     I still wonder what the dozens of teachers and friends who repeatedly begged me to use my wheelchair for my own good throughout high school thought of me as I fought their advice. Did they wonder why I was so resistant, or did they understand all that I was trying to salvage by limping instead? Did they think I was too proud to take a seat or too afraid to let them help? Did they think I was being an idiot or that I was overthinking it? Were they frustrated, sympathetic, or annoyed? The best answer I can come up with is all of the above.

     My family is planning a summer trip, and part of my thinking when I suggested a particular destination was that it would be easy to use my wheelchair there, so none of us would have to worry about how I was feeling leading up to the trip. Even if I end up feeling great by the summer, I am going to bring it with me. My aching desire for an ounce of relief from oppressive pain and exhaustion has finally outweighed my stubborn, resistant tendencies. Wheelchairs used to feel like imprisonment, but now they feel like freedom.

     I wish that I could perpetually exist within the confines of the Christmas season, so that my wheelchair could always be wrapped in tinsel and bows. I suppose I could decorate it in a more summery fashion, but it just doesn't seem quite as merry. I'll work on that over spring break, though. I am convinced that having pretty medical equipment is inextricably linked to self-esteem.

     I have always been impressed by the willingness of Emily and Josh to help me move between classes. After all, they were only high school sophomores too, and assisting me was certainly not their responsibility. About ten friends helped me decorate my wheelchair, and whether they did it for fun or because they knew how important it was to me (perhaps for both reasons), I was so amazed by the ability of my peers to turn something I considered embarrassing into something cheery and cute. I am slowly learning that there is almost always the opportunity to create a Christmas wheelchair, and there will always be people around to help with the tinsel and the bows.

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