Penny for Change

We are each confronted with components of our life and ourselves that we are unable to alter. As much as we strive to cling to a life created of our mind's idea of perfection, it is merely impossible. There are some elements of life that are simply out of our control: unable to be changed.  

But within each unchangeable circumstance there is something most beautiful.  The most beautiful thing? We do have control and we can change it. We each control how we allow these unchangeable and inalterable factors to impact us, shape us, mold us, and motivate us. We ourselves are far greater than any tragedy, diagnosis, despair, or struggle. Those uncontrollable things help make us who we are, but they do not define us or devalue our life's unique beauty. They are essential to our life's great story. 

Penny

Two weeks ago a port-a-cath was placed along the bottom part of my ribcage: ready to aid in the fight against CF when called upon. Since this port is going to be sticking around long term, I thought it only right to give it a name, Penny. The port, about the shape of a circus peanut, has 2 access points each about the size of a penny.

The initial plan was to have Penny go in my arm, similar to where a PICC line is usually placed, but due to vein issues had to be relocated to my abdomen. From the port at my abdomen, a catheter is tunneled beneath my skin to my clavicle where then it is inserted into a vein leading to my heart. So after two weeks of healing, the bruises are minimizing and the incisions are scarring over. Most of the time I forget Penny is even there. Then something brushes against my ribcage and Penny sends a sharp reminder of her presence. There's usually a wave of heartache that washes over me when I am reminded of Penny's presence. Like when I catch a glance of my bruised chest and the distorted skin of the entry sights. Or, when suddenly, without thinking, my fingertips will brush against my chest just below my clavicle and I can feel the tiny catheter (or tubing) just beneath my skin. Again, a flood of emotion descends upon me and I feel for a moment as if all the air is siphoned from my lungs. I close my eyes and take a deep breath, reminding myself of the goodness that is my life and some of the simple realities that accompany it. I remind myself of the elements of my life I cannot simply change. I remind myself how even though I cannot change the fact that I have CF and its willingness to mercilessly steal every breath, I do have the power to control how I allow it to impact me and live each day. 

The unchangeable reality is that it was time for a port-a-cath, but it is my current choice how I let it impact my life: positively or negatively. I can embrace the uncontrollable and inalterable, realizing the simple beauty of every breath I am still given, or I can live amongst a misery built upon an unchangeable denial. Does that mean there are times that when Penny wakes me up because I am sleeping on my right side or stomach that a deep hearted longing won't escape from my lips that I wish I could change the mere fact that I have CF? There will always be that deep seeded wish, but it's an element of my life in which I cannot control. 

But then that despondency turns to gratitude. I am grateful. Grateful for the life I am living, the people I know and love, and the incredible experiences I've embodied. It's because of this very unchangeable component in my life it is so very beautiful and incredible. 

The acceptance of ourselves and the ability to realize our life's unique beauty is based upon the acknowledgement of what we can and cannot change: allowing us to be grateful for every part of our journey that has helped mold us into who we are.  Love to you all. 

Be the change in the unchangeable. 

Scenes of Life

"All the world's a stage, And all the men and women are merely players." 

Date: June 12, 2015

Setting: An operating room, doctor's office

Characters: Ashley (me), Mark, Radiologist, Pulmonologist, Nurses, Receptionists

Call it a coping mechanism or a way for me to deal with my reality. A means to save myself from exposing a deep set pain and fear by being solely focused on the present scene: avoiding any thoughts of the next act. Of course, the next act is filled with incredible opportunity and possibility, but it's also filled with pages of uncertainty. There's an unsettled churning within me of what may lie on the next pages of my story: a pang in the pit of my stomach that each hope and dream is entangled amongst. I want to exist in every moment and be thoughtfully present in the scene at hand, living each experience to its fullest. What's that churning pang? The fear of an untamable and uncertain future: an antagonist that is continually trying to undermine and foreshadow a future from which I so desperately want to hide. That character at the center of my life's conflict? Cystic Fibrosis. 

Scene: Now

This morning I find myself forced to look ahead and prepare for the coming pages. This morning a portacath is being placed in preparation for future conflicts with CF. (A portacath is a medical appliance that is placed beneath the skin for long extended periods of time. A catheter connects the port to a vein in which antibiotics can be administered). Denial has played a starring role in my life these past years in conjunction with CF and its realities. For years I've forbid to even listen to conversations about a portacath: never even entertaining the words and realities that were spoken to me about the future and continued demand for life saving antibiotics. After every PICC line I would enter back into my safe state of denial, telling myself that I am "fine" and that "this time I'll be stronger than CF." I'd blame myself that I somehow allowed myself, in a moment of weakness, to let CF overtake me. I'd then go through the painful process of getting a new PICC line, another rigorous course of antibiotics in hopes they would give me my life back and more time, and then start the cycle all over again. Again, the topic of a "port" would frequent the conversations at my doctor visits, but I forbid to even entertain the idea. The inner monologue that played within me went something like this: 

Ashley (inner dialogue): "A port? Please. I don't need a port. A port would mean I am sick, and I am NOT sick. A port would mean I've reached a point with my CF that makes things real: it would mean CF is winning. It would mean that I am not strong enough to beat it on my own. It would mean I am weak." 

So you're asking yourselves, "what has changed?" Because of countless PICC lines being placed in my arms over the last few years, my veins have been left scarred. This meaning any future possibility of a PICC line is almost impossible due to all the scarring and my veins being impassable (a natural and common occurrence in people who frequently use PICC lines). So, here I sit. Prepped and ready for the events of the morning to be underway. Does a part of me still forbid to see this reality? Yes. I want nothing more than to turn to new pages of my life's script that contain no PICCS, no port, no CF. But this is the script I've been given and it's time for me to confront it and embrace every glorious moment: easy and difficult. 

Scene: The Near Distant Future

We decided when I had my last PICC line pulled in March that it was time for a port. We decided it was best to do this while I am doing well and not have to put my body through the extra stress of not only fighting off an infection, but having to place a port at that same time. We must best prepare ourselves for those days ahead when CF creates an insufferable conflict: we must be best prepared, never letting CF have any advantage. 

There's always going to be a part of me that forbids to believe this is truly happening to my body, that CF has such destructive power over me, and that this is what's written on the pages of my life. But it is. I have CF. Does a port mean I am not strong? No. It makes me stronger. It gives my "starring role" depth of character and gives new direction and fight to my story. It gives me the possibility of new scenes and more pages. It gives me potential for more beautiful days, for more life. 

No matter the story we are each given, there are countless conflicts, resolutions, lessons learned, characters, and rising and falling of action that fill every scene of our lives. Today this is my scene, and it's filled with the hope of tomorrow. Each scene beautiful in its own way. So, I take a deep breath, turn the page,  and breathe bravely into the next scene. Love to you all. 

Don't be afraid to turn the page. Whatever lies within life's script is written from beauty: today, yesterday, always. 

Alive in Every Moment

The greatest tragedy is not dying, but getting to the end of your days and having the realization that you never truly lived. That one moment, day, or year was not distinguishable from another. That they merely just blended together because your life was not your own, but consumed by the chaos and rhythm of the world. Life passed by without notice: you never truly stopped to realize the beauty that surrounded you in every moment, in every single breath.

60 Day Challenge

When the 60 days began, I knew it was a large and lengthy undertaking not only for myself again, but to ask people to join me in the challenge: to post a picture for 60 days straight that encompassed something beautiful from each day. 

I was overwhelmed with the amount of photos that poured in, over 1,700 photos total. Each giving everyone a glance into the beauty of everyone's life. It didn't need to be lavish, excessive, or on any grand scale. It could be the simplest of things: a flower, a child, a tree, a piece of paper, ice cream, a book. What was most beautiful is it gave such insight into the beauty that surrounds each one of us every day: all different, but beautiful. Some days beauty may have seemed so abundant and it was at every glance and in every breath. Then there were other days in which it seemed to escape us. But it was always present, even in the simplest of things like the very breath that filled our lungs. Beauty is always present, we just have to stop and realize it. We just have to take a breath. When we stop and realize it, it causes us to truly live in every moment and be present in the life we are each choosing to live, regardless of what we are each facing. 

Exist or Live?

What happened over the course of those 60 days? Some kept at it for the full 60 days, some posted the beauty that filled their lives intermittently, some were lost to the chaos and busyness of life, and some were fed by seeing the beauty of other's lives.  My greatest wish after the 60 day challenge? That everyone realize how easily we can just begin to exist in our own lives, never truly living and seeing the beauty in which makes up every day. That it's easy to suddenly let moments, days, weeks slip through our fingers without ever realizing that we are alive and breathing. That every breath is filled with so much beauty. That this life we are each given is utterly wonderful no matter the battles we may be facing. After all, it's the only life we are given. My greatest wish is that when we each reach the end of our days we may look back and see a life filled with so much living and full of incredible beauty. Thank you all for being a beautiful part of my life and taking part in this 60 days of finding beauty in every breath. Love to you all. 

Take a breath. Isn't it beautiful?

Day 60 - In the Face of Fear

Finding the beauty in every breath. 

Fear. It's a powerful thing that invades each of our lives. We can either allow it to rule every breath we take, or it can propel us to live more boldly and with greater purpose. But it also can be the smallest of motivating flames that can fuel the tinder into a raging debilitating destructive blaze.  

Past

To say I don't live in fear of Cystic Fibrosis would be a lie.  Sure, I wake up in the morning and it's the first thing that I think about and often the last thing that crosses my mind before going to sleep at night, but we all fear that in which we cannot trust and do not fully understand. 

Fear is what motivated me to hide CF for 27 years from the world: fear that I would be a burden, fear that people would see the real me, fear that I would end up hurting the people I love, the fear of being seen as different and weak. 

But fear was beginning to suffocate me: the more CF was becoming present in my life the more the flames of fear were fueled.  Just over a year ago I decided to break the reign fear had over my life. It was no longer going to rule me, but I rule it. So, I opened the door to my life and CF: I began this blog to share the beauty that fills my life and share who I truly am, instead of hiding behind a fear that controlled every breath I took. 

Present

Little did I know just how that decision would change my life in so many ways. Does fear still course through my veins? Of course, but it's a different type of fear. It's a fear that motivates me to live more thoughtfully. It's a deep stirring fear that motivates me to passionately live in every moment, appreciate every breath that I am given, and love with all that I am. 

This weekend over 100 people came together to represent Team Ashley at the Great Strides Walk: each person walking in the face of fear, in the face of CF. Each step a resounding commitment to live. When I begin to think of each beautiful person that was there, the beauty they've brought to each breath, and the selfless support they've given me I am brought to humbled tears. I know there never will be anything that I can say, do, or give that will show how truly grateful I am. There are simply no words that match the generosity, kindness, and genuine goodness I have experienced not only this weekend, but everyday of my life. I am so truly rich because of the people that fill my life: each relationship so unique and irreplaceable. Whatever fear CF may instill within me, I know I am not alone in the fight: each of your steps a lasting impression on my beautiful life. 

Future

There is still fear that lives in every cough, every PFT, every tinge of pain, every doctor appointment, every course of antibiotics, and every thought of what the future may hold. But in the face of that fear there is an army of support and love that is unmatchable: you. Fear is not going to paralyze me, but inspire me to truly live. Amidst the fear I choose to breathe bravely. Love to you all. 

Thank you. I have no words to match the gratitude I feel for the incredible generosity you've shown me, the endless support you've given, and the beauty you bring to every breath. Thank you for walking with me this weekend, this year, and every day. Without any of you, I wouldn't be here. With all that I am, thank you. 

Breathe bravely today and everyday, always finding the beauty in every breath you take.