The Sweet Life - Guest Post Written by Maren Engel

[Blog post written by Maren Engel]

I met Ashley four years ago while working as musicians together at a local church. Her sense of humor, authenticity, and spunk drew me to her immediately. We became fast friends. I deduced that Ashley was sick, but my Midwestern instincts told me not to ask. As my friendship with Ashley grew, CF creeped its way into our conversation and as the god parent and eternal babysitter for her two fur babies, I became more aware of the hold that CF had on Ashley’s life. Unexpected trips to the hospital had me “on call” with pups Cooper and Kalvin and I quickly learned the appropriate procedures when Ashley’s giant box of meds was delivered to the front door.  As a new member of Ashley’s world, I was in awe of her unbelievable strength and as a fellow singer, the idea that such a talented musician could be suffering from a disorder that affects her ability to literally breathe was unfathomable. An involuntary human function that I take for granted is one that Ashley struggles with daily. However, it is a struggle that Ashley refuses to let limit her ability to make music—which she describes as her life source—her necessity for life. How powerful.

Nothing makes me happier than going over to Ashley’s for a glass of wine, a few puppy snuggles, and a good gossip session. Ashley and I are what psychologists refer to as “Highly Sensitive People” or HSPs. I prefer to call us “feelers”. Hence, we have much to discuss. We spend a lot of time talking about happiness—where it comes from, how to get it, how to keep it. Ashley’s perspective on life, in part due to CF, is obviously unique and impossible to understand but she lives her life the way we all should: present and with intention, taking in every experience as something to cherish and grow from. It’s remarkable. Any active Breathe Bravely reader knows this. Ashley manages to accomplish so much while making time to enjoy a good dinner party, camping trip and to make every single person in her life feel appreciated and loved. She’s captures what truly matters in life. Her brave choice to share her journey with all of us is a gift.

A wise friend of mine and Ashley’s recently said to me, “Life is like a really amazing cake.” In my case? Carrot Cake. “Everything that happens to us is either the cake in the middle or the icing on top.”  I’m a dessert fan, so the metaphor obviously resonated. My take away was that most of our life experiences are like building the cake. These are the experiences that shape us, build us and mold us. And they certainly are not always positive. Sometimes they’re painful and horribly earth shattering. But they’re foundational--necessary. Then there’s everything else--the beautiful, fleeting experiences that keep life exciting—that’s the cream cheese icing.

As I’ve been reflecting on the last few years of my life and my talks with Ashley, I realized that I’ve been busy trying to ice a cake that isn’t quite fluffy enough yet. Annual travel experiences, activities that keep me busy every single night of the week, applying for this, applying for that, escaping to a new place—All things that will make my cake pretty on the outside. The icing is instant gratification and so much easier. But I don’t think all of that icing has made me very happy or fulfilled. So much sweetness has started to make me feel pretty sick, actually. I need more cake.

The cake metaphor immediately reminded me of Ashley. She’s baking her cake with all the best ingredients and helping me choose my own for a well-developed cake and a wholehearted life: Spending time with good people, practicing gratitude, peace, and kindness, fueling passion, striving for contentment, appreciating the simple things and learning to see myself the way God sees me. Mix all of this in with the inevitable obstacles that cause you to grow—pain, failure, uncertainty, disappointment—all of that makes a pretty fulfilling cake. And just like any worthwhile thing, it takes a few tries to get it just right. Oh, and of course the icing—all that sweet stuff—that’s really just a bonus.

I can’t put into words how thankful I am for Ashley and for the light, wisdom, and courage that she brings to the world. How lucky I am (we all are) to be a part of it. She is truly an inspiration. The ever persistent echoes of CF are truly muffled by all of her goodness and strength. I’m forever grateful that she has shared a little slice of her cake-one of my favorites!-with me.

Full Speed Ahead

We cannot change the course in which we have already sailed. We must trust this great adventure in which we've set out upon. We must bravely forge ahead ready to embrace whatever our journey has to offer; never allowing ourselves to become engulfed in past tides. 

There's no guarantee that our journey will always be smooth sailing or that we won't second guess the course in which we've charted. There's no guarantee that we won't get lost. That the waters won't be rough at times or that we won't wish to turn back. There's no guarantee that we won't lose sight of the impact of our own wake. But, we must continue to sail. For without sailing ahead, we give up all hopeful possibilities that lie beyond the horizon.

Ordinary Uncertainty

There has been a great weight pulling me down these past few weeks. Within me is a tumultuous tide writhing in uncertainty; a deep questioning resounding inside the hull of my being. I keep looking back at the wake of my journey, wondering if I took the right course. My mind keeps going back to those days in which CF lived out of sight and out of mind. Not only mine, but everyone else's I knew as well. I think about how my life might be different if I never started writing. If I had never set out onto these uncharted waters of honesty. If I had continued living behind a perfectly painted façade. 

Without a doubt that decision to share my journey with CF has changed my life. I often wonder how people saw me before they knew I lived with CF. What did they see? Someone simply ordinary? Was I measured against the same standards as everyone else? I fought so tirelessly to show myself and everyone just how strong I truly was, never wanting pity or special standards set for me. I thought that by hiding CF successfully I was achieving more. I was terrified that when people looked at me that CF would be the only thing they saw: someone who was "sick". I was terrified that everyone would see all that made me different, how weak I truly was. I've always wanted nothing more than to be like everyone else. But, hiding my life with CF also came at a cost: emotional, physical, and mental. Even though CF did not define me, it still impacted a large part of what made me, me. It's impacted the very person I am today. 

The Wake of My Choice

That wave of uncertainty? It comes from wondering if CF is the only thing people see when they look at me. Much of my life used to be separated into the people that knew my secret and those that lived blindly to the frequent PICC lines that were hidden beneath my cardigans, the hospital stays, and the doctors appointments. Of course, there were far many more who lived blindly to my CF than those that knew. To those many I had a few "sick days," what seemed like a constant cough that I'd do my best to temper with hoards of cough drops, and some sort of lung "issue". 

I know that by sharing my journey with CF my life has immensely changed. People will see me differently, there's no changing or controlling that. What I can control is how I let it impact the wind in my sails. I will let the very things that make me different breathe life into my sails and push me ahead. This journey has its uncertainties like that of a turning tide, but this journey of truth far outweighs any doubts; even if the waters are not always calm. Because of this journey, I have some of the most meaningful relationships I could have only ever imagined. I have a future that is filled with unprecedented possibility. I have accomplished things only by the grace and understanding of generous people and their commitment to embracing my life with CF. Yes, there may have been some unsteady seas along this journey that have caused me to want to turn back, but I am far more blessed than I could have ever imagined upon this adventure of life.

Sometimes we begin to question the journey in which we are on, wondering if we made a wrong turn somewhere along our way. Our sails lose the life within them that guide them forward. We begin to look backwards at the wake we have left. It seems to disappear before our eyes...

That wake we create may disappear from our sight, but it extends to every shore, leaving a piece of ourselves within every ripple. We may never know how that ripple impacted everything it touched. Maybe it gave a lifeless sailboat an extra push towards the beauty and possibility that lie beyond its horizon.

It's a new beautiful day and it's perfect for sailing. We must set our sights ahead and sail, navigating the unpredictable seas ahead. It's full speed ahead upon these beautiful salty seas. Love to you all.

Do you know the impact of your own wake?