Unbreakable

It had been five months since potent combinations of IV and oral antibiotics coursed through my veins - my body beginning to feel more like my own again and I was beginning to recognize the person I saw in the mirror. My mind was running at full speed again. Each day my mind shed a little of its doubt and mistrust of its own body – unassumingly instilling the belief within me that I was invincible.

But I am not invincible, and CF is ever-present. I’d be lying if I said I hadn’t been avoiding the signs of an exacerbation, desperate to give my body the chance to show me - show CF, that I was strong and unbreakable.

Reminded

How quickly I forgot the feeling of powerful poisons coursing through my body. For three weeks my body has been inundated with powerful IV infusions, oral antibiotics, and extra treatments. Its crippling presence evident in every aching joint and fatigued step. Every morning I can feel the sunken-ness of my own eyes deepening as I force myself to fall into my life’s usual expected momentum.  My body feels heavy and struggles to keep pace with my mind. I am reminded that my body is not my own. I am reminded that beneath the surface the fight against CF threatens to break me – trading a beating from antibiotics for the mere hope of getting one more day. One more beautiful breath.

This isn’t something new I’ve experienced, but this time it does seem different. As CF and its truth steadily chip away at my being, I can’t help but reflect over these past several years and the extended and frequent courses of powerful antibiotics. Is this how I’ve always felt? Has my body always felt this beaten during such courses? I think back to last year when for sixth months straight without break my body was inundated with different powerful drugs in hopes that something would combat the life-stealing force of CF. I remember those days being difficult but it is as if their honest paralyzing sting has been replaced or freed from my memory.

Mere Hope
It’s amazing how quickly the mind chooses to release and replace those excruciating past experiences with unwavering hope. Of course, those difficult moments live deep within us always, but we move on from them – choosing not to live in our brokenness but in the beautiful hope of the present and future. We live for those moments that the body proves its strength and mends the brokenness of that which comes in the wake of living with the realities CF, or whatever difficulty we each may face. I have no doubt that this trying course of antibiotics will soon be finished and these difficult moments too, will be overcome by the unbreakable hope that lives deep within.

Today, each beautiful breath is dedicated to all those that must live with and bare witness to the truth that is CF - parents, spouses, family, friends, medical teams, and the incredibly strong, tenacious, and hopeful individuals with CF. Love to you all.

Whatever difficulty you may be facing, remember there's an unbreakable hope that lives deep within you. 

A Spring Storm

As the warm rays of sun cast a gentle radiating warmth upon my cheeks I can’t help but think to myself, “we made it.”  I can feel the sting of tears at the corners of my eyes and I have to tip my head towards the sun to keep the tears from spilling down onto my cheeks. We had made it through winter. Spring had arrived early and I was wrapped within its promising warmth. Spring meant new life, a renewed hope, and an inner peace budding deep from within. Again, resounding within every part of my being were the words, “we made it.” And I believed and celebrated it whole-heartedly.

But I was reminded how quickly the seasons of CF can change. How quickly a spring snowstorm can suffocate spring’s hope – reminding the innocent new life of its unforgiving power. Today, winter’s fury is forbidding to relinquish its control to the peace of spring. Yesterday was a beautiful 60 degree spring day here in South Dakota. Today, we await an unforgiving wintery snowstorm.

Winter’s Song

Upon returning home Monday morning from a most beautiful extended trip to the beach, I had a full afternoon and night of teaching scheduled. Early that afternoon, I went into my studio to warm up and get myself organized for the voice lessons that lie ahead. But something felt different and off. I thought maybe it was because I literally hadn’t sung a note in ten days – the most time I’d taken away from singing in over a year. As I warmed up and sang through a few things, I noticed how quickly I’d run out of air and how difficult it was for me to finish phrases that just ten days ago were simple. Within me I could feel winter’s gentle, yet unforgiving snowfall beginning to drench my being.  As I taught and sang with my students the rest of the day and night, I noticed how starved of breath I felt and how my lungs burned to take in more air than they were allowed.

Tuesday morning between the normal adventures and opportunities that fill my life, I made a visit to my clinic to do a quick lung function test (PFT) - just wanting to check-in and see if there was any cause for concern. I was reminded of the unrelenting presence of winter amidst the beauty of spring. In just two weeks since my last PFT my lung function had dropped 10% to a FEV1 of 40%. So, Penny was called upon. Aggressively, both IV and oral antibiotics were started. The words “we made it” wept silently from the deepest parts of my soul. Disappointment threatened to replace spring’s eternal hope. Disappointment in myself and a disappointment and sadness I feared to see reflected in the faces of those I love. But within that disappointment is still something to be grateful for – I made it five months without IV antibiotics. That’s the longest I’ve gone consecutively in over 3 years. That is truly something to celebrate.

The Hope of Spring

This winter storm’s snow will melt into the earth, disappearing beneath the spring’s powerful sun and renewing warmth. This “storm of CF” will melt away. Today’s snow will give life to the most beautiful of springs. The seasons of CF will always change and its storms will rage but the hope of spring will dwell eternally within me, always waiting to be enlivened by spring’s warmth.

Amidst the pains of CF is the deepest gratitude and love for my CF Team. I am so thankful for each of them - their genuine care, guidance, strength, and reminding me that I’m never alone in this journey.  I'm grateful for my deep love of singing and the gift it gives me to combat CF and know when something is off. I'm grateful for each of you and the beauty of spring you each reflect into my life. Love to you all.

Think spring. 

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.

Today's Patience is Tomorrow's Possibility

Patience is not an entity in and of itself, but is a process, the act of learning to embrace a state of mind.  It's something that must be practiced, embodied, and given room to grow.

I must have patience for today, for the days ahead, and a steadfast appreciation for days past and how they have molded me.  I would be foolish to tell all of you that I haven't had moments this week when I lost sight of myself and felt a complete wreck: distraught with emotion for the future and the life I called my own a mere few weeks ago.  CF is not only getting a grasp on my lungs, but my mind as well.  I am so used to making plans for tomorrow, cramming as much life into every minute of every day, and living in overdrive.  I am having to retrain my mind as much as my body.  Most of all though, I am having to embrace patience.

Small Victories
I must embody patience for what today brings, and patience in knowing tomorrow is a new day filled with new possibility.  It may look different than I so desperately want it to, but every ounce of progress and growth is something worth celebrating.  Each day holds its own victory, no matter the size.  The smallest of good and progress overcomes any adversity.  The smallest of victories may be paired with the greatest patience, but in the face of this battle against CF any progress is a tremendous victory filled with possibility.

Today was filled with beautiful victories.  For the first time in weeks I can catch a glimpse of myself when I look in the mirror.  For the first time I feel somewhat like "me."  For the first time in weeks I do not completely fear this body which encapsulates my soul and mind.  I do not dread or fear looking in the mirror and seeing what stares back at me.   For the first time in over a week, I recognize myself.   Part of it might be my body and mind adjusting somewhat to the current mood of my lungs and life, but for sure what I see is the reflection of love, support, and unfathomable kindness I've been shown by the medical team here and the all wonderful support I've been given outside these walls by all of you.

Hope
Yesterday, my lungs showed us all some signs of improvement.  My lungs and body have a long way to go, but it's progress.  After days and days of decline and not recognizing the person from within myself, having patience for today and hope in tomorrow's possibility have brought progress and small victories.  This is going to be a long road, and there will be tough decisions and days ahead, but I am learning to dwell in patience and remain grateful for the beautiful journey that is my life.  Most of all, grateful for each wonderful person and experience whose path I have the privilege to cross.

I am so thankful for every person that is on this journey with me.  I owe my life to so many wonderful people.  I am so incredibly humbled by the generosity, love, and endless kindness I have been shown.   I am learning that the pursuit of patience holds a beauty all its own.   Love to you all.

Be patient, you never know what beautiful possibility it will give to tomorrow. 

Whitewashed

[Blog entry created by Mark Bonnema]

Ashley got her wish! It snowed six inches in Sioux Falls this weekend – light, fluffy, delicate snow – and Ashley was at home to watch each and every flake descend on the world around her! 

I think the allure of “drinking in a bit of fresh air….” that she wrote about in last week’s blog post wore off as soon as she tasted the bitter cold of our current arctic blast. Yuck. None-the-less, there was a palpable contentment and peace about Ashley’s spirit as she watched the snow from our living room…. memories of her recent hospitalization melting away by the fireplace. The boys (Cooper and Kalvin, our dogs) were out of their minds with excitement that Ashley was home, and ensured Ashley did not have to endure even a moment of loneliness as I was away working at the hospital over the weekend.

The first major snow of the impending winter is always a bittersweet affair.  While it is cold, icy, and treacherous, it is also lovely and fresh. The grays and browns of late fall are painted over with a whitewash of delicate snowflakes.  The world takes on a new allure and promise. After a bit of adjustment to the new temperature norms, you can almost see past the cold into the majestic beauty that is winter.

*It was here that I was going to write about Ashley, and how she is not able to undergo a whitewashing of her lungs, to have them renewed and rejuvenated, as cystic fibrosis is a progressive disease that is always adding to its cumulative damaging effects on her lungs. But, Ashley suggested that instead I write about something much more difficult…. me. Me and my experience during the difficult periods when CF is acting up.*

Honesty & Truth

I opted to keep the theme of whitewashing. It betrays perhaps my greatest and most pathological coping mechanism in regards to the effects of cystic fibrosis in our lives. I have a tendency to whitewash difficult situations.  My default is to slap an “everything is ok” response on any and all inquiries from friends and family, and also on my own internal monologue. “She’s doing ok today….”  Or “I’m doing fine… everything is great.” These statements mask the truth. They whitewash situations filled with fear, uncertainty, risk, and powerlessness.

Ashley’s recent hospitalization was a trying one. She had great care from the healthcare team, and the hospital staff is always very kind and gracious to us. But Ashley’s health was at the worst of her lifetime during the hospitalization. Three days after her surgery and bronchoscopy, Ashley spiked a temperature of 102°F. I’ve never been so scared. She had been on antibiotics for the past five weeks… what could be causing a fever so high? Is there a new infection in her lungs? Has the infection spread to her bloodstream? Will her PICC line have to come out? Could she be having a pulmonary embolism? Will she be ok? Will her oxygen saturation stay up? Will she lose the lung function she worked so hard to gain over the past 2 years? Will she be able to come home soon and make our house a home again? Will she be able to keep doing what she loves in practicing, performing, and teaching music? Will she have energy and time for me?  

Rather than dwelling in the uncertainty of these 

fears, I do what I am all to good at- convince myself that “everything is going to be alright.” Whitewash the situation to make myself feel more at ease. Hide the fact that I feel powerless and helpless. Betray my fears of uncertainty.  Don’t let anyone see that this is difficult and trying.

I am not as brave as Ashley. Rarely do I feel the courage and conviction that she displays every day as she faces cystic fibrosis head-on, with honesty and relentless hope. While she faces the difficult and sometimes ugly truth that is CF , I cower behind a whitewashed façade, blindly hoping the troubles and trials will go away.

Yesterday, Ashley’s lung function was 33%, her lowest ever. It is declining rapidly. I am afraid for her. I am afraid for our life. I am afraid for our future.

Sometimes there just isn’t enough paint. Perhaps this is a situation for some cleansing tears. Stay strong,  Ashley. Breathe bravely. I believe in you, I will be here, and I love you.

What are you trying to whitewash?