Chronic Illness  
 June 14, 2016

The Tube Fed Wife

Life is a fragile thing. In an instant it can be destroyed by a circumstance beyond your control; the existence you knew shattered like glass beneath your feet. No matter how hard you attempt to piece back the fragments of that previous life there is no restoring it to exactly the same as before.

I remember my life fracturing moment vividly; it consisted of one hour that changed the entire course of my being. October 21st 2011 I was diagnosed with an incurable, and fatal illness called Systemic Scleroderma. I remember walking into that Rheumatologist office equipped for the worst, but still being unprepared for the news I received. In that hour I was told I would be fortunate to live another ten years — and that was only if my circumstances were favorable.

At the age of 20 I should have had engagements such as college, relationships, and my career swirling through my mind, instead I had my own mortality. I left that office with pamphlets to read, treatments to start, and a new way of life to begin. I was warned of the path my disease would take, and of the horror I would soon endure. My health forced me to watched idly by as my fellow high school graduates left for college, received their degrees, started budding careers, and even began their families. As they progressed through the natural events of life I was alternatively attached to events such as chemotherapy, long hospital admissions, support group, and never ending chronic pain. Slowly over a course of three years my body began to deteriorate, vital systems starting to shut down, and organs beginning to fail. By the age of 23 I was being kept alive by a surgically placed feeding tube, supplemental oxygen, dangerous chemicals, and a team of specialized physicians.

As a young adult you have so many goals for your life, and you honestly believe you have 100 years to achieve them. Suddenly I was given a sliver of that time, and a body that could not handle even the simplest of tasks. I focused on nothing but reclaiming my shattered pieces, of sweeping up and attempting to place them exactly the same as they had been before. I believed I could attain that pre-diagnosis life if I just situated all the shattered pieces back together — but I quickly found out that that is not the way life works. Many of my pieces no longer existed, crushed beyond what I could realistically repair. Just like shattered glass I found I could not perfectly align the fragments to resemble the flawless and unbroken product. I however during my journey discover that those splintered pieces could be fashioned into something quite new and extraordinary. While this current finished product may have cracks, protruding edges, and be held together by messy glue, it has certainly never been more dazzling.

True joy is letting go of what you believe your life is intended to be, and instead revering all that it is.  Once I accepted this new existence, alone with every alteration and imperfection, I began to enjoy my life again. I began to enjoy who I was again. I no longer focused solely on recovering what I had lost, but on creating something new. I focused on the small victories and minute satisfactions found in my day to day routine. I took the time to enjoy every breath, every word, and every moment. Although my existence doesn’t seem like anything to be cheerful about to the typical observer, I have found so many incredible moments to revel in. My life may not be glamorous, or as long as I intended it to be, but it is one full of simple pleasures and an understanding of how broken things can still be beautiful.

Chanel White