Life Is Not Fair

“Life is not fair.” I think we all have uttered those words at some point in our life - when we lack the ability to comprehend the life that has been given to us, its meaning, and when we lack the clarity to see ourselves within our own reflection. Those simple words knit together encompass so many sentiments and mean something different to every person. Those words quietly seep their way into our thoughts, stirring wildly within us, continuing to build until pouring themselves out through tears of despair or overwhelming gratitude. These words have escaped from my own lips upon a whisper through a torrent of falling tears. I’ve seen them written upon my face as I look into the mirror.

I have found myself consumed with these simple, yet powerful words this past month. They’ve relentlessly stirred within my inner dialogue embedding themselves between every breath that gives me life. It’s the very breath itself that reminds me of their true meaning. I’ve had moments laden with agonizing despair, wishing CF never existed in my life - the words propelling themselves into thoughts of “what ifs” filled with a deep yearning. But most of all, the words “life is not fair” have been filled with an overwhelming disbelief. A disbelief founded upon humbled gratitude.

A Month of Meaning

This October has been filled with such reminders of how unfair life can truly be. First being the annual fishing tournament my family hosts every year for CF in northern MN. The people that attend every year have become a large extended part of my family. It’s always like “going home” every year – embraced by a familiar and loving warmth. As I stand amongst them on one of the most beautiful days October has ever seen in northern Minnesota, I think to myself, “life is not fair.” I see the pains of the past year reflected in their faces. I feel their heartache as they mourn the loss of loved ones, a diagnosis, or uncertain future. I feel it within their warm embrace that is hesitant to let go.

  

Two weeks later I was graciously honored by my alma mater, Augustana University, with the Horizon Award - an alumna achievement award for an individual who has graduated within the last 15 years. Days leading up to the celebration were laden with whispers of the words “life is not fair.” As I stood before a crowd of people I so greatly admire and respect receiving the award, I felt those four simple words linger within every breath I took. 

How could I possibly be here receiving this award? What have I done to deserve such recognition? Again, these words were built upon disbelief and gratitude for the beautiful life I’ve been given. Those words, “life is not fair.”

Lastly comes during a CF event in which I feel so privileged to have been a part of called "Corks and Kegs for CF."  An event made up of some of the most generous and passionate people I’ve ever had the good fortune to know. People each affected by the devastating realities of CF. As I put on my dress for the event this past Friday night, the words, “life is not fair” rang through my body with a deafening force. I stood in front of the mirror doing my best to hold back the tears of gratitude that filled every one of those words. That night, as I stood in front of hundreds of people sharing my gratitude for such an opportunity, the words “life is not fair” lived within every breath as I verbally relived and painstakingly shared the past 12 months of my life living with CF. A journey in which grace led me back to that very stage I stood on a year ago sharing my story. Life could have taken such a different course those 12 months ago and I know for some that same grace I've experienced is not given. Life is not fair and I feel a deep seeded guilt bound together with gratitude for those such words and all they mean. Every life-giving breath reminding me of the grace I’ve been shown.


A Life Built Upon Gratitude

At the end of a month filled with such memories and meaning the words “life is not fair” resound with a tone of thanksgiving and gratitude. A gratitude for the very breath that sustains this incredible life. I wonder why I have been gifted a life filled with such goodness, with such meaning, the deepest friendships ever imagined, and a support of people who believe in me even when I do not. I do not know, nor will I ever understand. I do know, however, everyone deserves such goodness and beauty in their life. As I think back to each of those memorable events this month I think about the people who shared every moment of them with me. Those memories and moments would mean nothing without each of them. 

I do not sit and ponder the fairness of life, because none such exists. The fairness that does exist lies in the beauty of every breath that we have each been given and how we share that beauty with the world. Thank you for being a part of this incredible journey with me. You all mean more to me than you’ll ever know. I am filled with such humbled gratitude. Love to you all.

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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! 

Holding My Breath

For the first time this season I’ve seen the colors of the Fall.  

It wasn’t for lack of signs flourishing around me, but for my own self induced blindness. For the past weeks there’s been a growing sense of anxiety rising up within me. I’ve been hyper sensitive to the changes happening around me for I am terrified that any acknowledgement will make them real. That by acknowledging any changes I acknowledge the passing of time, something in which I have no control. So, I’ve done my best to silence the crunching of leaves beneath my feet. I’ve firmly kept my eyes fixed upon the lifeless unchanging gray pavement. I’ve placed my gaze on what’s narrowly in needed sight, desperately clinging to the thoughts of the lusciously vibrant green life filled trees of the Summer. 

Holding Time

Yes, I know the Fall is beautiful, and I remember being so deeply awestruck by the magnificence of seasons past. But, this Fall is different. The slightest detection of Fall to my senses makes the very breath that fills my lungs freeze in familiar trepidation. Tears unwillingly fill my eyes at moments and I hold my breath in hopes to keep the outpouring of deep-rooted fear and humbled gratitude from overcoming me in an uncontrollable war of emotion. I hold my breath in hopes I can hold onto it just for a moment longer, not willingly wanting it to escape my lips.

I press on hoping that tomorrow these relentless stirrings of emotion subside. But, they do not. They’ve only grown these past few weeks, manifesting themselves in every venture of my life. With every glimpse of Fall color amongst the trees and every breath of crisp autumn air that touches my lungs, I’ve further tried to bury my fears, desperation to truly live, and the ever-questioning doubts that threaten to consume me. I grow restless and uneasy as I fiercely try to hold life and time within my grip. 

 

A Reflecting Change

I wondered how long I could go on like this? How long could I deny the beauty of the world around me? Even though I knew what beauty I was missing, I still forbid to stop and look around. I forbid to open my eyes and ears, reassuring myself that it was better if I just ignored it. That somehow if I pretended it wasn’t happening, it wouldn’t and there would be no “Fall” and therefore “Winter.” But, I saw and felt something this weekend that will live with me forever. I stood in front of a sea of people, both stranger, dear friend, and family. In them I saw not only my own pains reflected in their faces and tears, but also the beauty in which my life is built upon. For a few seconds it was as if the world stopped and in their eyes I could see all the trials, pains, and beauty that lived within each of their own lives. I saw that no matter the heartache, the difficulties, the fears, and the uncertainties of life we all are connected and bound together by a connection that transcends words. We are bound together by a relentless hope. I was reminded that none of us are alone in any venture of life: the good, the difficult, or the in-between. Seeing my own reflection in their tear filled eyes, I was forced to see my own pain and fear. Most of all, however, I was forced to see every beautiful breath that makes my life what it is. 

Yes, CF made last year’s Fall a difficult one and the Winter was something I don’t want to begin to imagine again, but by trying to protect myself from those pains and memories I gain nothing. I only lose sight and feeling of the beauty that fills my life. It shuts out all the possibility of greatness that tomorrow holds. By intently staring at the pavement and avoiding the beauty of this very moment and season, I am doing that in which I fear most: missing out on life and not truly living. 

Change

Sometimes we are forced to open our eyes and realize the beauty that surrounds us no matter the season. The seasons are changing. I can’t stop that. I can, however, embrace the unique goodness this very season offers. After all, this moment is all any of us are guaranteed. What’s the use in ignoring its unique, unbridled, and nondiscriminatory beauty? 

That next morning when I awoke after staring life's pains and hurts squarely in the face, I looked up at the changing trees and did not shudder when the crisp autumn air kissed my cheeks. Instead, I took a deep breath, opened my eyes, and was engulfed by such breath-giving beauty. Love to you all.

Open your eyes and breathe bravely. Today promises to envelop you in its own beauty if you let it. 

Thank you to everyone who helped make the 14th Annual Cystic Fibrosis Walleye Classic an incredible success. It could not have been possible without each and every one of you. After all is figured, it looks like around $17,000 will be donated to the Cystic Fibrosis Foundation. Head on over to Breathe Bravely's Facebook page to take a look at the weekend's pictures and stay up to date with what's happening!