Saturday, June 13, 2015

How Illness Taught Me That Broken Things Can Still Be Beautiful

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.




10 comments:

  1. I can so relate Chanel! Thank you for putting into words so eloquently! I am so impressed with your wisdom & grace at such a young age! Song writing is my way of procession & sharing. My song: "What if" has some of the themes that you have spoken of. https://www.youtube.com/watch?v=puT7I-APlys&feature=youtu.be I realized I had to stop fighting, accept that my life is different now, and see the beauty all around me.

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    1. Thank you so much Nicole! You are so very talented! Hugs from one fighter to another! :)

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  2. This comment has been removed by a blog administrator.

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  3. OMG I finaly did this correctly! Anyhow sweetie, I stumbled across your blog and was blown away. First off you are an amazing writer! Think about writing a memiour! Prob spelled that wrong. Idk if you're on FB but I'd be thrilled to be friends. I also have a relatively seriously and rare auto immune disease Behchet's disease. NOBODY including the doctors had heard of it. 8 suffering years until diagnoses, and many hospital stays including one that I almost didn't survive. I was 23 years old when it started getting bad. The only reason I'm saying all this is because I can truly relate to and am extremely sensitive to your situation. Being so young and going from healthy to we don't know what your outlook is ie. life span, quality of life, progression of disease. OMG and the meds. Lol. You've got me bear hands down. I've only got 16 pills a day . Lol, lol. Ughhh, better take my fun nightime meds and hit the hay. Please hit me back if you can. xoxo Kristen Fairman

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    1. Hello Kristen! I am so glad that you stumbled across my blog! Welcome :) So nice to meet a fellow warrior. Bechets is one hell of a disease, I am so sorry to hear you are battling it! I too have a fondness for researching odd diseases and am very familiar with that particular one as I know a few sufferers of that illness. Thank you so much for your kind words, they mean so much to me! If you're on Instagram find me @thetubefedwife

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  4. Good god you're a great writer !!! I couldn't but to reread :) oh yeah, not that this really matters per say, but I've neuro Behchet's disease. I'm weird and always like to research odd illnesses. Makes me feel less odd. Lol lol

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  5. Hey chickadee, I just realized that you hit me back ! Thanx ! Hopefully your having a nice 4th of July. Realizin you hit me back just made my day. Keep doing what you're doing xoxo

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  6. Hey Chanel :) hope your doing okay. If you need to rest, PLEASE DO!!! don't ever worry about keeping up with blogging and responding to us. Your health is THE most important thing. It sounds like your hubby and family support you and love you. Chill, and update us whenever... we're not going anywhere. Lol

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  7. hey Chanel! I do not suffer from an illness anything like yours, so I will not even try to understand. I cant even begin to know what you and your number one fan (your lovely hubby) are through with this battle. I do, however, understand PTSD and depressing and anxiety. and they suck some booty. Im sorry you had those awful people tell you that you were faking it and that you just needed to put you in your mind that you will better and you will get better. (#itdoesntworklikethat) I had a doctor tell me the same thing. Umm, hello! Not crazy, that is not going to work. people are stupid. But I have a question that will sound rude but it is not meant to sound rude. I am just very straight forward. Why do you fight so hard? Like you have said this illness is going to kill you, so why do you fight so hard? What keeps you going so strong? (maybe not every day but some days) It just seems like you are like, "oh I tube in the stomach and I cant breathe to well but you know what, I kick ass!" Andi just want to know what keeps you going.

    Oh and im sorry my grammar is awful and if there are any words that aren't common to you. im from south Louisiana and my hubby is from Washington and I still through him off some time with my grammar and phrases I use.

    And one more thing, people post such mean things because even with everything that is going on in your life, youre still a beautiful person inside and out.

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    1. This comment literally gave me the BIGGEST smile! I feel like "oh I tube in the stomach and I cant breathe to well but you know what, I kick ass!" should be my new tagline! ;) Thank you so much for taking the time to write me Ashley! Your comment really made me think... why do I try so hard? And you know what... I honestly don't have a fabulous answer! lol I think I just love living no matter the circumstances! I have a wonderful husband, a roof over my head, and an adorable fur baby who always is willing to cuddle; they make me want to get up every morning :) I now that sounds to simple to be true, (faith has a lot to do with it as well) but I think thats the basics of why I fight to live. I just really love my life!
      PTSD/Depression/Anxiety are serious illnesses, and truly reek havoc on a patients life! I am so sorry you face them as well. It took me a while to work through them in a therapy called EMDR and multiple sessions of Reiki, but am now happy to report that my symptoms have lessened! :)
      Thank you again so, so much! I am sending you big hugs from Washington! You are wonderful!

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