Enjoying the Journey

My last semester in undergrad, when I was preparing to take two senior seminars plus another upper level co-requisite course, I came across a quote that really reached me. Before the semester began, I printed it out and pasted it to the cover of all my notebooks I would use for my senior research: "I want to remember that no one is going to make my dreams come true for me...it is my job to get up every day and work toward the things that are deepest in my heart...and to enjoy every step of the journey rather than wishing I was already where I want to end up." I knew I was in for a lot of work. But there was something different about this type of work. It was work I chose to do, I was passionate about. As someone living with epilepsy and hearing loss, I was not a stranger to difficulty navigating through life, work, and school. For the first time in years I was ready to take this on, unhindered by my disabilities. I felt as if I was finally on the right track of life, and when I read this quote, it reminded me that I really was enjoying my journey. Enjoying everything included, because each tiny aspect of what made me "me" was my journey, and there was nothing I could do to change it. I majored in World History, with a focus on literature, and also achieved a minor in French. Learning language was somewhat difficult due to my deafness, but I threw myself into it. When I was little, I had an extremely rare inner ear disease, which essentially caused brain tissue to leak from my ear. Needless to say it was a life-threatening condition. From my first surgery on, when I began to develop epilepsy and lost my hearing, I started giving up little bits and pieces of things- mostly surrounding school. School was too hard, I would complain, and because of my disability, it was even harder. I hate that it took so many years for me to understand the joy is in the journey, not the destination. I hate that I had barely begun to understand that when I faced a second near-death experience. In September 2019, in a freak accident, I was stung by the tiniest of little yellow jackets. My mom was with me; we were driving and on our way to my grandmother's house when the bee was sucked in through the open window and hit me in the chest. It stung me, but we had no idea I was allergic. I had five surgeries on my ear over ten years; the longest surgery was nine and a half hours long. But those twenty minutes between getting stung and the ambulance arriving at my grandmother's house seemed longer than those ten years. I was stung right over the heart, and the first responders did not have an Epipen when they arrived. The ambulance did, and they arrived a few minutes later. By that time, I was unresponsive, covered in hives, and swelling up. My heart had nearly stopped and while I was still in the floor of my grandmother's bathroom, they hooked me up to an IV, they gave me nitroglycerin for my heart. I still remember the exact moment when the first responders went from a state of "this is a standard allergic reaction" to "prep the ER, we're losing her." I couldn't respond, but I felt the change in their pace. It has not quite been a year since that attack, but it made my epilepsy and deafness seem just a little less important, because those things hadn't tried to kill me in over a decade. It reminded me, too, that every single day I had to continue enjoying my journey. Except, that quote is no longer about my classes. I went back to school and am currently working on my Master's degree. I'm still enjoying it. But every time I leave the house, I have to check my purse for my Epipens. It's not a choice, like with my hearing aid. I can choose to leave my hearing aid at home if I don't want to wear it. I can't choose to leave my Epipen behind. It's a weighted reminder I carry with me everywhere of my fragility in this life; but I also carry this quote with me everywhere. Because life isn't about the destination- I've come too close to that final destination too many times to care to count. It's always about the journey, and I'm determined to enjoy it as best I can with what I've been given.

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William

artist, musician, writer, Luddite

Troy, United States