Tuesday, October 20, 2015

Winning the CF Lottery - Guest post written by Janeil Jaggers Whitworth

Life's most treasured happiness comes from the beauty we find in one another. The relationships that define us are that in which we find deep connection, understanding, and empowerment. 

Janeil is one of the most beautiful souls I have ever met. And by met, I mean through the keyboard of our computers. You see, Janeil also has CF and she lives in Ohio. I feel so deeply privileged to be connected to her as we share our journeys, struggles, and hopes living with Cystic Fibrosis with each other. She is a kindred spirit and none like I've ever met. Her incredibly crafted words so genuinely reflect the beauty of who she is. Here is her story: 

[Blog entry created by Janeil Jaggers Whitworth]

Winning the CF Lottery
Whether you believe in chance as random acts in a universe of coincidence or the purposeful workings of a higher power, cystic fibrosis is the product of chance. It takes two carriers meeting, a formation of a relationship, a pregnancy, the inheritance of both mutated genes, successful gestation followed by the birth of a seemingly healthy baby, and the right diagnosis to have CF. I often joke that I won the CF lottery and therefore, should play the actual lottery (by lottery, I mean scratch-offs and I never, ever win- ok, I win $2.).  I once mentioned “winning” to an adult close to me, she responded, “Honey, you didn’t win anything.” I didn’t respond at that time, but I haven’t stopped thinking about how incredibly wrong and shortsighted she was. I still repeat this conversation in my head, over and over again, forming what I should have said to the naysayer. Here, would have been my response in a perfect world where I am able to politely and eloquently stand-up for my disease and myself:

I won a pre-designed relationship with a woman who would invest endless time, money and encouragement into an endeavor with no guarantees. She would be strong when I was weak. She would listen to the crackles in my infected lungs and instead, suggest afternoon walks by the courtyard flower gardens. She would answer the phone calls of a teary, desperate adult and offer hope for days to come and comfort from creeping sadness. She would spend sleepless nights at the hospital on a pullout couch, silently worrying about inevitable decline of a progressive disease that was beyond a mother’s control. As a parent of a child with CF, I believe you suffer more than the patients themselves and if I could, I would take away that pain forever but I know she would gently take it right back and spare me. Our connection would not be the same if she weren’t my caregiver and my guiding force through the toughest days. We were made to have each other; to fill the time and ragged breaths that CF cuts short. My heart is forever grateful for my mom, her support, her hugs and her words. That type of sacrificial love IS winning and I could end this response right now and be abundantly satisfied with my reward.

I won the capacity of overwhelming empathy. When you spend weeks in the hospital on IVs, long hours filled with coughing, or face the uncertainty of a foggy future, you quickly learn what loneliness and isolation feel likes, you endure physical pain and quiet exhaustion, you fight through loss and unceasing disappointment and you experience financial strain. As a result of those experiences, I find it easy to feel other people’s struggles and an instinctual desire to ease them.  I may not be able to fix the problem or rewire their brains to feel only joy, but I can bare witness to their pain. I can be silent, listen and exchange tears if that is what’s needed to comfort an aching soul.  

I won a community of people who are strong beyond measure and possess boundless hope. When I speak with others who have CF, I am always reminded of what it means to be truly understood. They have experienced the same struggle, frustration and disappointment and there is never a need for further explanation. They celebrate when new therapies are developed, even ones they can’t take themselves, and harmoniously ache when a fellow “cyster” or “fibro” has passed. That community has built me up and reminded me that I am not as isolated as previously thought, in a seemingly lonely disease where the risk of cross infection superficially matters more than support. Friendships, like the one I am privileged to share with Ashley, keep you fighting, breathing and hoping. 

I won faith in a larger plan and a mighty reason. I believe the Lord, the one who intentionally knitted CF into my genes, has blessed me with a string of events that twist and turn to create a version of myself that is designed to be humbled, enjoy and give thanks for the simplest of days. He cares for me, provides for me, and teaches me what it means to live a remarkable life in a failing body. Pain often provides the perfect platform for internal growth. It allows us to experience the very richest of emotions and in turn, reminds us of what it means to be truly loved, cared for, and connected with others. Pain is never easy though. It isn’t easy to endure the loss your father, to watch your mother victoriously battle cancer and to live with a brutal chronic disease all in one lifetime, but it is purposeful and He is mighty. And for now, I will trust in Him, reap my rewards and keep winning with my disease.

Janeil recently shared her first blog post on her website: www.flowerlungs.com 
Please check out more of her beautiful writings and story there! 

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