THE BLOG

Even Though My Body Continues to Fail Me, Every Fiber of My Being Feels Strengthened

05/06/2015 01:45 pm ET | Updated May 06, 2016
Marilyn Nieves via Getty Images

I open my eyes to a flat bedroom ceiling. Immediately a fresh wave of pain washes over me, gripping my muscles. Any movement is uncomfortable and stiff.

I sit up and attempt to stretch my arms. Loud cracks ripple from my swollen joints. I slowly lift my hands to my face and loosen the tight oxygen cannula I had secured for the night. I gently remove it and set it to my bedside table. I let my feet hang over the side of my bed remembering not to move too quickly or my weak muscles may bring me crashing back down to the hard floor.

After gaining my balance, I walk unsteadily into the restroom across the hall, each step sending pain shooting up my legs. I gaze into the mirror. A woman with tired eyes stairs back at me. Her reflection shows someone who has lived through unimaginable heartache, loss and pain.

As my eyes move over her body, I see the soft pink scar above her right breast where her Power Port rests just under the skin. I see the baggy shirt hanging freely over her emaciated frame, clearly depicting a bump above her belly button where her feeding tube resides. This woman looks so unfamiliar to the one I have seen staring back at me for the duration of my short life. This woman was so haggard, being kept alive by oxygen, tubes, and chemicals.

I carefully undress and turn on the hot water for the shower. My hands clumsily attempt to grasp the knob but do not quite have the stretch left in them to maintain a firm grasp. I reach over to the sturdy shower grab bar and stand silently in the steady stream. Since becoming ill, showering has become somewhat of a marathon. Sheer exhaustion comes over my body after just three minutes into washing my thinning hair.

The hot water has loosened my joints enough to travel into the living room, glide a fresh coat of cooling therapy over my aching muscles, and hook up to my 14-hour continuous feeds. This is my breakfast, lunch and dinner. As the soothing rub dissipates into my skin, and my body begins to slowly absorb the formula, I feel myself become somewhat human again.

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Photo courtesy of Chelsey Shaw Photography

At the young age of 20, I found myself diagnosed with an aggressive and degenerative autoimmune disease known as Systemic Scleroderma. My disease creates an overproduction of collagen, a protein found in the convective tissue. Collagen is a building block, the framework really, of the human body. Too little collagen and you would fall apart; too much and you quite literally become a living statue.

It was as if someone was slowly pouring thick, heavy concrete into my body through an IV, effectively crushing and solidifying my organs, skin and blood vessels. Upon my diagnosis I often watched the outside world through waiting room windows and hospital beds, wondering how all the people out on the street below could continue to exist unchanged while my life crumbled at my feet.

Illness can seize your fragile existence in a matter of weeks.

It effectively shatters the life you once knew, and the body you have become accustom to. Disease knows no age, no race, and no gender -- it strikes without mercy. Suddenly you become a slave to a master you never swore your allegiance to; your life no longer governed by your choices. You are left with no other option than to endure. You leave that physicians office after diagnosis with pamphlets to read, prescriptions to fill, procedures to complete, and a new way of life to begin -- a life drastically altered by new limitations you have never before encountered.

Your body becomes uncharted territory, and you alone are left to explore its treachery.

When diagnosed with a life-destroying illness, changes come about in an individual. While yes, many of these changes are physical, there is something that stirs so much deeper. Trials change you in a way that no one truly understands until they must navigate their own.

You emerge someone new among the ashes of your old life. You seem to gain an older soul -- a soul with life experience well beyond the young years you have lived. Suddenly the world is in Technicolor. Everything is more vibrant, and you can practically feel the existence of those around you. You understand that grudges mean nothing, life lasts but for a fleeting moment, and happiness should be treasured above all material things.

You gain compassion for those around you, and are more epithetic towards the lives of others. You begin to comprehend that time is a precious commodity so many waste in this life. You walk slowly and enjoy the view, sit and chat 10 minutes longer, and take the lengthy drive past the setting sun instead of hitting the freeway.

You fill with gratitude for the little things others may take for granted. You are grateful for the oxygen tank you most tote for it gives you breath; you are grateful for the tube in your stomach for it gives you nutrients; and you are grateful for the port that delivers toxic chemicals into your blood stream for it keep you alive another few years.

Even though my body continues to fail me, every fiber of my being feels strengthened.

I feel like a new woman, more confident and assured in herself, with a much deeper understanding of the world around me. When I look at that haggard face in the mirror every morning, the tired eyes, and the battle scars, I also see a vivacious woman who refuses to give up though she lives in near constant turmoil. This woman is resilient, fierce and has a passion for procuring life enjoyment, even in a body vandalized so heavily by disease.

While I may not get as many years as I was hoping for in this life, I feel my very soul has lived a thousand years. This old soul, enlightened well beyond my 23 years, finally understands the true beauty in life.