Three Simple Words

Everything is different. Three simple words that will live within me for the rest of my days and upon every breath that I am given. Tears still fill my eyes as those three words resonate in my mind. I can hear the tone in Mark’s voice as he said them, and I can trace the painful and loving honesty in which they were born to an uncontrollable truth that silently fills our life together. The uncontrollable truth called cystic fibrosis. Indeed, everything is different, but it was an honest difference I thought only I could see.

Why are those words so difficult to hear? Because I didn’t know the differences that existed intrinsically within me were noticeable to the outside world, most of all to those I love. I thought I had hidden them deep within the most cavernous parts of my being for no one to see or experience. But I was reminded that it’s not just me enduring the barrage of potent antibiotics and the effects of CF, but that their impact is much farther reaching. That their devastation silently touches all those present in my life. Suddenly, I felt exposed and like I had failed. I had failed at protecting those I love from me, from CF. Most of all, however, I felt as if I failed at protecting Mark.

The Difference Within

I don’t think Mark fully knew the extent of those three simple words and the depth of their meaning. Just how different is everything? How different am I?  Here’s an honest glimpse: 

For five weeks potent drugs saturated every ounce of my being – unknowingly permeating every part of my conscious and unconscious existence. Toxic drugs laden with a desperate unspoken hope silently infiltrated my body from within - making me slowly feel like a stranger within my own body. With every infiltration of antibiotics it seemingly gets harder to navigate this body that feels as if it’s becoming more and more foreign to me. I don’t recognize this body that has accompanied me for more than 29 years. As these drugs always seem to silently strip me of myself, I feel a bit of who I am slowly slip through my fingers. I desperately try to hold onto any familiar part of my existence. I push myself harder, constantly trying to prove to myself that I am in control - holding onto anything recognizable within myself. But there are times such powerful drugs and CF feel as if they are whitewashing every part of me – stealing my thoughts, focus, vibrancy, and self-trust.

I anxiously retreat away from the world, terrified that I am unrecognizable not only to myself but to those I love as well. Terrified that I will fail to be the person they need and lovingly know. I do my best to pretend all is fine. I do my best to pretend and prove that I am better than fine. Desperately trying to prove that no matter the merciless pounding from CF itself and the antibiotics I take, I am immovable, unshakable, and unstoppable – all in hopes of protecting those I love from the wake of CF. Even now, I feel a devastating (and knowingly ridiculous) disappointment in myself and my inability to hide such differences and protect those I love from myself and CF.

 

To Be Me

My heart turns back to Mark, thinking of what he’s silently endured and wondering the extent of such pain I have unknowingly caused him through the years. He has never shown any anger, disappointment, or remorse for this life with me - no matter how different everything at times may seem. He may never know the true impact of those three simple words, but I will always remember their deep and life-changing meaning that were born of the deepest love and honesty.

I know at the core of my being I can’t fully protect him or those I love from the brutal realities and effects of CF. It’s a truth itself just like CF. Yes, indeed, everything is different, but one thing will always remain the same: the endless gratitude that fills my very existence. My gratitude for every beautiful breath that I am given and the beautiful love that fills my life. Love to you all.

What has someone said to you that has left you changed?

The Unsettled Sea of Stability

Within me lies a ceaseless current that fiercely drifts between the unpredictable seas of desperate contentment and self-resolve. It’s a tumultuous tide that finds a constant tension between passionately wanting and expecting more of myself and gratefully embracing all that I have. A strong current is rooted in a reality that lies just beyond sight at water’s edge – a devastating cliff silently existing beyond my view. I am sailing amidst the dark in unknown and unpredictable waters, always cautious of becoming too comfortable with life, as I know the course of life can quickly change.

A Restless Current

The salty seas of CF are steady right now. This past Friday at my CF appointment I blew a FEV1 of 50% (lung function). My last three lung function tests in the last five months have all been within a percent or so of each other. The resounding theme of such a number being the word “stability.” I’d be lying if there wasn’t an underlying current of disappointment. I know, it’s unfounded and ridiculous. So, you must be wondering the reason for such a restless current of disappointment? Shouldn’t I be relishing in the waves of life’s present stability? I should, and there is an undeniable part of myself that truly does cherish these beautiful moments of stability.

But, I crave progress and gain as I feel it distances me from the realities of CF. It makes the existence of CF in my life less harsh and painful. In every quiet moment of stability I feel as if I’m further being pushed out into open water – more exposed and vulnerable. Maybe it’s because I have seen and felt how quickly the unforgiving storms of life can rage - engulfing me in its crippling powerful wake. Maybe it’s because I’ve tirelessly fought for every breath of stability - always consumed not with the question of “if” but “when” another storm will overwhelm me. Maybe it’s because I’ve seen the price I and those I love have had to pay and the changes we’ve all had to endure just to cling to stability - always seeing the reflection of my own disappointment in their faces when I am not able to tell them of any gain. Maybe it’s because within this time of stability I realize more and more what can all be lost. 

Along this journey, harbored deep within me is also a constant guilt. I recognize how incredibly lucky I am - always knowing I could be sailing a very different sea of CF right now. How can I be so wholly grateful for every beautiful breath while still wanting more - desperate for any sort of positive progress? I know there are so many people with CF that would do anything for such stability and 50%. I want calm seas and more beautiful breaths for all of us.

Change

The past year has come with great self-reflection and many life changes. An ever-present desperation to live fully in every moment was working against me. For most of my life I ignored my tired body, constantly pushing harder to try and distance myself from the progressing undeniable realities of CF in my life. As a storm of CF would rage, I’d batten down the hatch and sail myself unknowingly further into the storm, thinking ultimately I would sail through the tumult of CF. But I never fully sailed through, I just steadied the boat – always knowing the seas below me were waiting for the right winds to catch me off guard. And with unforgiving force they did, threatening to quickly capsize me and plummet me into the powerful stormy seas of CF.

But I continued sailing – my fervent sight always set upon the horizon and calm waters. Some difficult decisions were made that January of 2015 and little did I know more would only follow. Those months were incredibly difficult but these days of stability are filled with their own unique struggles. Even within this stability are brutal reminders of the progressive and unrelenting disease of CF within my body. But the most difficult thing that challenges me? Protecting me from myself. I’m constantly trying to restrain myself from easily falling back into the deep seeded belief that I am invincible and unbreakable. I’m constantly striving to keep this ship balanced upon the unfair waters of CF that lie below. To get to this point of stability, it has taken great work and dedication. I know it’s this cautious self-awareness and this strict self-discipline that have allowed these steady tides of stability. I know I will never out-sail CF, but I can do my best to weather each current that I’m graciously given.

Stay the Course

I’m learning to embrace this stability while always charting my journey upon an endless hope and contentment. I must not misinterpret lifeless stagnancy for stability. After all, my life is anything but lifeless. Each beautiful breath is filled with more life than ever. Today I will graciously cling to the stability of 50% all while tirelessly fighting to keep it. Love to you all.



Keep your eyes on the horizon and enjoy today’s steady waters.

A Hidden Chaos

[Part III of "The Artistry of Being Honest."]

There’s a bottomless well of churning thought and emotion that engulfs the very core of our being and is born of a silent inner strength. That strength unassumingly the very foundation of who we are and the life that courses through every breath. It is the beautiful dance that lives within the purest of inner joys, yet is the weight in which embraces our tears and makes them forcefully fall. It’s always present - alive in our most vulnerable of moments and within a deep tenacious hope.

A Piercing Presence

But there’s a deep anxiety that dares to challenge that strength in which is woven through every honest part of who I am. It tirelessly tries to pull me into a consuming place of churning emotion and thought. It dares to prove my feared self-proclaimed inadequacies. It isn’t easily perceivable to the unknowing eye, nor is it a part of my journey with CF I easily expose. It’s not the barreled shape of my chest, my distinguishable cough, or the piercing pain found beneath my ribs. No. It’s deeper- it's a gripping and relentless anxiety that dares to undermine the strength that I know sustains every beautiful breath I’m given.

I hide it deep within from the world in fear of exposing my true weakness. Reverberations of its laughter course through my body in a breathless silent panic. At times, its suffocating grip clenches my throat tighter and tighter until I feel I am gasping for air. Its piercing presence unassumingly woven within the simplest moments of my life and within every unwritten possibility. Its concealed restlessness stirs within every self-doubting thought that prides itself on highlighting the uncontrollable realities that accompany my life. It is made up of a constant worry of time, living life to its fullest, and the feeling I am not doing enough. Most of all, it’s composed of the fear that I am causing those I love pain and disappointment created by the uncontrollable elements of my life with CF.

Inner Strength

I try and silence these anxieties and for the most part, I can keep a rational hold of them. But sometimes, it feels as if the mental weight of CF is suffocating me. I do my best to keep it tightly controlled within my grip, doing my best to never allow it to surface. But there are times my strength is no match for CF’s anxiety, and I am reminded that there is much in life that I have no control over. I do my best to re-center myself and seek the beauty that surrounds me. I breathe deeply and find my inner strength - clinging to the gratitude for the goodness that fills my life. Within the most chaotic and anxiety ridden moments, I always find that unyielding seed of hope planted within the deepest part of my being. Most of all, I smile and remind myself that this is my life and this is my truth.

I share this with you not because it will make my anxiety disappear but because sometimes being strong comes in the form of the most humble honesty. This is my life and this is my truth - it all makes me who I am. Difficulties are a part of our journey and manifest themselves differently in each one of us whether it is physical, mental, or emotional. It is in the sharing of my own life that I hope you feel a renewed sense of your own beautiful strength that is alive in every breath you take. But, most of all, I hope through the honesty of my own life that you find the strength to share your own incredible journey - the beautiful and the difficult. Strength is not measured by the amount of life we are able to withstand but is a reflection of how we react to the life we’ve been given and how we commit ourselves to the act of honestly living. Love to you all.  

What makes you strong?