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?

A Love Unlike Any Other

2008

Love.  It is alive in every word given.  In every touch shared.  In every breath taken.  

Love.  It is timeless.  

Love.  It isn't easy. 

Love.  It is the core of who we are, and its reflection can be seen in the beauty, heartache, and in the hopes that fill our lives. 

Love.  It is the greatest thing any of us will ever know.  

2002

Our Unique Story

If I close my eyes, I can still see the bright blue eyes and dimples I fell in love with over 12 years ago.  It's the beginning of our story.  Even then, I knew there was a unique depth and love within Mark.  A love unlike any other.  He is one of the very few people who has always been able to look me in the eyes and see who I really am.  He's always been able to see beneath the façade I so perfectly have always tried to paint for the world.  He has always seen me for me.  He still does. 

2004

I think back to those early years.   We would spend countless hours talking about the future and all its possibilities.  CF wasn't even a thought, let alone on the roadmap of our future plans.   I can still feel that excitement for life and how anything seemed within reach.  Life and love seemed so simple.  How could I possibly know that behind it all was a love greater than I could have ever imagined?

I often think of what our life would be like without CF: what dreams we'd be chasing that we had talked of for hours 12 years ago, 6 years, or just 2 years ago. We've experienced a lot of life in these 12 years: they've held some of the most incredible and beautiful moments, and they've held some of the most heartbreaking. Through the best of days and the hardest of days though, Mark's love has always been steadfast.  He never complains about the life we've been forced to embrace, but instead continues to tirelessly fight for another tomorrow together.  Even when I look in the mirror and see pale skin, tired sunken eyes, hair that is falling out, a puffy face, and a body I don't recognize, my reflection in his eyes still tell me that I am beautiful no matter what.  In the face of CF's progressive life stealing ugliness, he sees only beauty.  He does the laundry, dishes, goes to the grocery store, cooks, makes countless runs to the pharmacy, preps antibiotics and gets up early just to help give me a break from the world of CF, and continues being a nurse long after he leaves his shift at the hospital.  Not to mention he puts up with my sassiness, dries my tears, and unquestionably supports my dreams.  He never gets upset.  He just loves.  

2010

Heartbreak & Hope

But my heart can't help but break for Mark.  At times I feel as if I have cheated him out of the life he really deserves and the love he is really worthy of.   I think of how unfair it all is for him.  What have I done to his life? After all, this is supposed to be the prime of our lives.  I think of how our life used to be built upon spontaneity and our love for adventure: traveling every weekend, going out for supper or drinks with friends, running errands day after day.  But now it is built upon keeping CF and its exhaustion in balance.  That sleepless nights aren't caused by the cries of a new baby, but because of an alarm to change IV antibiotics again.  We used to thrive on experiencing life together: constantly on the go. But now I often watch him go it alone.  Nothing broke my heart more than when I was at the U of M and every day he would go out exploring the city, always taking pictures and sending them back to me as if I were right there next to him.  But I wasn't.  I couldn't help but think of the life he'd have without me, and how CF was stealing the time we did have together.  

2014

What has Mark done to my life?  Blessed it beyond measure and given it more joy than ever thought possible. The love I have for Mark is unlike any other.  Its depth is immeasurable and the gratitude I have for him is limitless.  The beauty of my life begins with the person who is willing to start and end every day with me no matter what we face, the person who is willing to endure every easy and difficult breath, and the person who is willing to fight at the chance for another tomorrow together.  Could we have ever really known what the future would bring those 12 years ago?  No, but that's what makes it our unique story: a story rooted in a love unlike any other.  All we have is today, this very moment, and the memories that keep the fires of hope alive for tomorrow. 

Love.  Always. 

Irreplaceable

[Blog entry created by Mark Bonnema]

“Lover….”

That is one of our endearing names we use for each other. It usually evokes the tone “I have something to tell you, but please don’t be mad.”

In this case, the something Ashley wanted to tell me was that she had lost her wedding ring. She continued, saying, “I’ve checked each of the twelve places I usually leave it…”  Yes, that’s right… TWELVE places she may leave it throughout out our house. From the old phone cubby, to the soap holder, to the actual jewelry box, to the shelf next to her meds, to the top of the dresser and bedside table … a search of all the usual suspect places came up empty.

“Well, I am sure it will turn up eventually,” I said.

Eventually turned into weeks, and then months. Finally, a thorough search of the entire house was underway… still we could not find her wedding ring.

Luckily we had insurance. A couple calls to the agent and a few more to the kind, wonderful associates at The Diamond Room by Spektor, and Ashley’s ring was being refabricated with improvements. Lost, but not irreplaceable. Sure, the ring is not the original, but you would never know looking at the new one.

Perhaps you realize this, perhaps this is new news, but this is typical of Ashley. This is who she is. Things are prone to being misplaced in her world. This trait is part of what makes Ashley’s character. Its part of what I love and what drives me crazy at the same time. Bless her heart, if she loses the keys one more time….

Here’s the thing. Most objects are replaceable. It may be a nuisance to replace a set of keys or a wedding ring, but things and objects can be replicated and or replaced. Ashley, however, is anything but replaceable. There is no other Ashley, nor will there ever be another living, bravely breathing person with a heart and soul just like hers. She is unique in every way.

I cherish and adore every breath that she takes, realizing that the gifts of breath and life are a fleeting privilege, one all too real for Ashley.  What would I… what would we (including you, the reader) do if we were to lose Ashley? Who and how would that void ever be filled in our lives? We could search the whole world and never find another soul to replace the beautiful, brave soul that she is.

There is no insurance policy that can offer to replace or replicate Ashley. The closest thing we have is YOU.  That’s right. You are Ashley’s best chance at survival, longevity, and a continued chance at living passionately and bravely, bearing her soul for all to see.  When you support the Cystic Fibrosis Foundation, like so many of you have done over the past few weeks and months, you provide funding to support research. The research is getting close! For the first time ever, drugs are being delivered at the genetic level that are allowing persons with CF to live symptom free! CF no longer rules their lives. It no longer robs them of the gifts of breath and life. It no longer threatens to steal our loved ones away. But the new drugs only work for a select few persons with specific genetic defects. More research and development is needed to extend the benefits of these life-saving, disease CURING drugs to all persons with CF.

Understand now? YOU are part of Ashley’s insurance policy… the closest thing we have to keeping her heart and soul here on Earth with us for as long as possible by funding research that can –and we believe WILL save her life.

Ashley will go on losing things. It’s inevitable. We will continue to replace them as the need arises. But we cannot afford to lose Ashley. She is irreplaceable.

Have you paid your insurance premiums? Know where your wedding ring is? More importantly… how have you shown that you cherish that which is irreplaceable in your life?

In Good Company

Think of the number of people you encounter in your day, your week, or lifetime.  Look at the people who surround your life.  What brings you together?  Is it because you're family, went to school together, or because you share similar interests?  Another element that brings people together is often experience:  going through the same heartaches and joys.  

What if you couldn't be around those people?  What if you put their life in jeopardy by being near them, or that they were harmful to your health?  You have experienced similar pains and joys of life, but you can never share yourself wholeheartedly with that person. You cannot show that person empathy or compassion through a hug, a quick visit over coffee, or just the touch on the arm.  You can't even be in the same room, or building. 

This is CF.  

Because the bacteria fostered in the lungs of people with CF is so life threatening, we are a great danger to each other.  I may be growing a bacteria that someone else has not yet been subjected to, and vice versa [MRSA, pseudomonas aeruginosa, NTM]. New and more bacteria means more rampant infections, more scarring in the lungs, worsening lung function, and respiratory failure.  Per guidelines of the CF Foundation "Only one person with CF is allowed at foundation sponsored indoor events, offices, or meetings. If it is an outdoor public event people with CF should maintain at least 6 feet from each other." Great precautionary measures are taken in the CF clinic as well: gown and gloves for all who enter.  Even though the bacteria that wreaks havoc on my lungs won't affect you, you can still be a carrier that leads to cross-infection. 

Until the last year or so, I never realized how isolating CF was.  I think of my last hospitalization, about the floor of the hospital and how many of us had CF. We were locked in our rooms, strategically maneuvered from one location to the next, and shut off from the only people who could truly understand.  I could hear them coughing, or would catch a glimpse of them as they walked the halls, but never could sit on the edge of their bed and talk about life.  Sure, I had my incredible friends and family, but I just wanted someone to really "get it." What do you do when all you want is talk to someone to justify that you aren't utterly crazy?  That someone else feels and think the same things as me?  

Community

For a long time I didn't want to read the stories of people with CF, I didn't want to read blogs, I didn't want to get newsletters about "what's happening." Why? It terrified me.  It was much easier for me to be in denial about the reality appearing before me. Maybe it was a way to shut out the destructive fait I witnessed for 17 years with my brother? Maybe it was me caring too much what everyone would think if they knew?  What changed?  Honestly, I felt alone and terrified.  I stumbled across a blog that so greatly impacted me: it is what gave me the strength to show the world the real me.  The blog's author is Caliegh Haber from CA. She is 23 years old and awaiting the call for a double lung transplant.  Because she is such an incredible individual tomorrow's post will be solely dedicated to her.  

Look at the people around you.  That hug you just gave? Cherish it.  That breath you just took? It's a gift. My gratitude and love for you all overflows.  Thank you so much for being my "community" and making each breath so incredibly beautiful.  Love to you all.

Don't just call a friend today, go have ice cream together. 

Leave Your Mark

Pick a color.  Now, imagine everything your fingertips touch is left with a brightly colored fingerprint.  Think of all the things you touch during the day: doorknobs, your computer keys or tablet screen, your phone, books, a coffee mug, the hand of a friend, the steering wheel of your car, and so on.

You get the idea.  Imagine everything you've touched today covered with your colored fingerprint for the world to see.

What's my color? 

A frosty white, and I actually do leave a visible fingerprint on everything I touch. A person with CF has 3-5 times more salt in their sweat, so as a result we may have a type of salty frosting on our skin.  Parents often comment how their children taste salty when they kiss them.  I can feel and see the salt on the palms of my hands and fingertips, on the tip of my nose, my legs, and eyebrows.  I am like my own personal salt shaker.  Salt, anyone? Just kidding, that's disgusting. 

Because people with CF lose a large amount of salt through their sweat, they must strive to stay well hydrated and replenish low salt levels. 

What my glass usually looks like.

Why are you so salty?

Cystic Fibrosis disrupts the chloride balance within the epithelial cells that are found in the lining of the lungs, digestive tract, and sweat glands.  This means there is an imbalance of salt and water in my epithelial cells.

Salty White Fingerprints

What's a good thing about leaving salty white fingerprints on everything? I never lose my glass at a party.  Any type of glass, smooth, or reflective surface I touch is left with a frosty white fingerprint.  I often wonder what it would be like to touch something and not leave a mark.  I can clean my ipad or phone screen in the morning and by night it is covered with smudged, salty fingerprints. 

My Ipad - can you see the frosty white fingerprints?

Thank you to everyone who has left their unique and beautiful fingerprint on me! Love to you all.

Where are you leaving your mark?