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. 

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.

Sorry

[Blog entry created by Mark Bonnema]

Another restless night. When will sleep come?
Another coughing spell. When will the inflammation settle down?
Another bought of pain. When will we find a safe and effective pain reliever?
Another infection. When will the PICC line come out?
Another drop in lung function. When will things go in the right direction?
Just another day in the life of Ashley Ballou-Bonnema.

I would give anything for Ashley to have one good night's rest, free from the steroid-induced insomnia and coughing spells that wake her up when she finally does find sleep. I would go to the ends of the earth to find the elixir that brings peace to her lungs and ceases her relentless cough. I would spend every waking moment extracting bacteria cells from her ravaged lungs, if only I could. The disease and its slow, steady advance on Ashley's life often leaves me feeling helpless. I bear witness to the sleepless nights, the coughing, pain, and shortness of breath. But there is very little I can do to alleviate Ashley's suffering.

What can I do? How can I help? I try to offer counsel and encouragement, but I have no idea how much energy and will-power she has exerted just getting out of bed and getting ready for the day. I cannot fully relate or understand what it is like to live with the disease each and every day. I try to soothe and ease the pain by rubbing her back and aching joints, but it is merely a temporary solution to a chronic problem. The pain always returns. I try to help keep her nutrition status up by cooking meals that she enjoys and that are high in calories. Still, her weight falters. What can I do? How can I help?

Helpless
Over the years I have learned to accept my role as spouse and supporter, as the one who bears witness  to the struggle, but can do very little to lighten the burden. Ashley often apologizes to me, apologizes for 'being a burden,' or for 'holding us back,' or 'for being sick,' as though I blame her and hold her at fault for how CF affects her life. She does not realize that I am the one who feels sorry, helplessly so. Sorry I cannot do more. Sorry I cannot find the answer or the cure. Sorry I cannot make the disease and all its symptoms go away.

If you know Ashley at all, you know that she has little to no time for pity, sorrow, and helplessness. While I am confessing my feelings of helpless in relation to Ashley's relentless battle with CF, Ashley and I intentionally choose to live life with as few regrets as possible. Each and every day is a new day filled with the promises of togetherness, adventure, and challenge. How do I best help, support, and love Ashley as we daily adventure through life? By treating her like she is normal. By refusing to see her as "sick," and by never treating her as though she were incapable or a burden.

Normal

Ashley longs for normalcy- to be treated like everyone else. She wants to be seen for the person she is rather than the health condition she bears. She longs for people to relate to her according to her personality, character, abilities, accomplishments, and potential. She hopes people see a beautiful, brave, spirit-filled woman with things to offer this world. She just wants to be "normal."

While our life is anything but normal and we cannot ignore the effects of CF in Ashley's life (doing so would be life threatening!), Ashley does not let CF define her life and I very intentionally follow her lead. I choose to treat Ashley as Ashley for the beautiful person that she is. When we need to deal with the challenges of CF and face it head-on, we do. But in the moments between, we live and cherish life together.

How do I help? What can I do? Even though she is anything but, I treat Ashley as though she is normal.

How wide are the boundaries on your "normal?" Can you stretch them today? What, or who, might you see anew?

Spring Winds

South Dakota

I live on the plains of South Dakota. Not like Laura Ingalls Wilder, but in a beautiful big little city where the wind can blow incredibly strong.  It is Springtime on the plains, which means there are days of absolute perfection, and then there are days plagued by extreme winds: complete with blowing tumbleweeds.  This time of year in South Dakota can be just beautiful.

This is my favorite time of the year. I wake up in the morning and see the sun pouring through the windows promising a beautiful day.  I envision stepping outside and feeling the sun warm upon my face: pure bliss. Wait. What's that I hear? It's the sound of the wind hissing through the trees and against the window.  I walk outside to take part in the beauty of the day and am nearly blown away.  I stand my ground as the wind whips through every part of me, trying to lead me to where it demands I go.

Windy Days
Having CF is a lot like living on the plains of South Dakota.  Some days are the most beautiful days one could ever experience in life and some days are like living in a wind storm.   The warm sun hitting my face on gorgeous calm days makes me forget about the unbearable "windy days." Those furious winds also make me appreciate the calm days even more.  The winds of CF are trying to push me off course, trying to push me to the edge, trying to control me.

South Dakota

The inflammation of my airways crucially affects what kind of day I am going to have: blue skies and a light breeze or gale force winds adorned with tumbleweeds? Some days nothing helps calm down my angry airways, and my lungs feel like wet towels trying to be wrung out.  I am always conscious of the air I am breathing in and how my airways and lungs may react.  I am constantly analyzing my environment: "What is the weather doing?" "What front is moving through?" "Is it windy?" "Are the farmers in the fields creating extra dust?" "Is there a candle burning?" "Is someone having a fire?" "What fumes am I inhaling: paint, cleaning solutions, perfumes?" My lungs seem to be more and more sensitive to the air around them the more my CF progresses.  My CF Team is constantly working with me to control the amount of inflammation caused by CF, as amount of infection often coincides with the amount of inflammation.

South Dakota 

Tall and Strong
When I wake up in the morning and peer out my window to the world, the bright sun and blue skies promise a beautiful Spring day.  Not until I get outside do I feel the wind furiously whirl around me.  I do my best to hide those "windy days" from the world, but I know there is still something beautiful in each of them.  CF tries to navigate the course of my life, but I stand firm and will not allow it to push me.  I am stubborn like the Oak Tree that stands firm among the howling winds on the South Dakota plains.  I may bend and sway, but I will not break to the winds of CF.  I will breathe bravely.  Love to you all.


Where is the wind pushing you?