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?

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. 

Trouble in Paradise

[Blog post written by Mark Bonnema]

Vacation - a perfect combination of down time, relaxation, sunshine, but also a little added stress. Even something as simple as traveling to Florida to relax in the sun with family is not as easy as it seems when traveling with CF.  

Just because we are in Florida does not mean we are insulated from the everyday issues a couple living with CF may have to face. In fact, now that we have nothing but time on our hands, emotional and relational issues that have been lying dormant just under the surface of our relationship have opportunity to emerge. Its like the tide is going out, revealing what has been hiding under the seemingly peaceful surface waters. I feel it. I am all too aware it is there. Ashley feels it too. The undertow. When we are at home and in our daily routine, it does not bother as much, but we are not at home anymore, now we are in “paradise.”

The issue? My emotional life (or lack there of). The most difficult feeling for me to cope with is helplessness. I feel it often, slowly deflating my spirit, conditioning me to believe there is nothing I can do to fix, heal, or save Ashley.  It leaves me with an unsettling fear that I hate to even think about, a fear that Ashley’s health will turn and I will have to watch as she battles for every breath. An extra cough, a rattle in the chest, or sunken eyes send panic coursing through my veins. It pushes me to the point of fretful despair, which of course, Ashley experiences as pity and will have nothing to do with. Perhaps you can imagine her saying, “Aw heck no!” She will neither accept nor tolerate even the slightest hint of pity. And so I frantically do anything I can to stay busy and to try to provide for her the only way I know how (and distract myself in the process) – cooking, cleaning, doing laundry, keeping the house in repair, playing nurse... I feel better about myself because I have been able to do something, even if I could not save or fix Ashley.

But, and it is always a surprise to me, it seems Ashley still wants me to just be her husband - a partner and companion in life that shares in each and every joy, hurt, pain, and celebration. She wants and needs me to be who I once was, someone who is in tune and in touch, listening, noticing, being thoughtful and caring. My quest to do things for Ashley to combat CF perpetually gets in the way of my being a husband. In fact, it has caused me to forget how to even go about being a husband, and nowhere is this more glaring and evident than while we are on vacation, in "paradise."

I can’t switch off. I don’t know how to stop being caregiver, housekeeper, cook. It is patronizing to Ashley. She is not invalid, certainly not incapable, and does not need to be treated like a child. I know I make her feel that way at times, like while on vacation and I try to do, plan, and prepare everything for her. Meanwhile she’s looking for a husband, and I am stuck in caregiver mode, perhaps because I do not want to come face to face with the undertow of emotions lying below the surface, threatening to pull me under. Its much easier and safer to stay busy doing things for Ashley, and to equate (or confuse?) that business with showing love. 

Being a husband is not a role I can step into and out of. It’s at once an everyday and lifetime way of being that elevates and supports my spouse in each and every aspect of her life. True, it may involve some caregiving and doing of tasks in support of Ashley, but it needs to go deeper, and that is what I have lost touch with. Leave it to paradise to remind me that the sun and sea breeze does not fix everything.

This is hard for me to admit. I feel I have let Ashley down, myself down, and given CF a foothold in our lives. I hate putting it in writing, which seems to make it official by shedding light on it. But Ashley means too much to me to let the tide of CF erode our relationship as it thrusts painful emotions upon us and between us, threatening to drag us under into the undertow. 

  

I am in this with you, Ashley. I am committed to fighting CF in the many ways it creeps into our lives. But what’s more important, I love you, and I love you as the person that you are above, beyond, and regardless of CF. You are my sunshine, and I don’t ever want it to set on us or on our beautiful life together.  You are my paradise. 

What threatens to pull you into its undertow?

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.