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?

Watching the World

I sit within the walls of my hospital room and peer out into the world.  Snowflakes dance across my window as I yearn to breathe in the crisp cold air I know whirls beyond the glass.  I touch the window hoping to drink in a bit of that fresh air through my fingers: hoping to breathe in some life from the outside world.  

As I sit within the walls of this hospital and watch the snow fall, I cannot help but think about all the incredible people I have in my life and all the amazing opportunities I have been gifted. I find myself reflecting on memories, dreams, the beautiful and meaningful gestures of people, conversations, the new and the lasting relationships I am so lucky to have: the life that fills me.  It is weeks like this I am reminded just how beautiful my life is, and how grateful I am for every breath and every person who makes them memorable. 

Empty Halls and a Life all My Own

Being in the hospital is always both a mental and physical battle.  As I sit within the walls of this hospital room I can't help but think of how the world continues on as normal, regardless, of where or what I am doing.  Time never sits still.   I look out my window and watch the snow swirl around the people as they come and go from the hospital: leaving footprints in small drifts of snow.  Throughout the day many more people make the trip to and from the hospital entrance: always in a rush to get to the next place: never taking a glance at the sky and its falling beauty.  As night descends the hospital becomes quiet.   

But, I am still here.  I am still locked within these walls.  I cannot go home to my boys, to my life, to school, to my friends.  For a few more days this is my home.  But honestly as CF progresses this place will become more and more my home.  It's filled with the most generously caring people and My Team who I trust with everything I have left.   So, I put my shoes on, grab my mask [CF guidelines], and take off to explore the rest of the hospital campus.  As I walk the empty halls I realize how during the day these halls are filled with people doing their jobs, helping people, saving lives, but tonight Mark and I are the only ones what seem to be on the entire hospital campus.  Everyone is home, tending to their lives: with family, friends, and living as if time nor CF has any bearing on them.

The boys came to visit.

I get back to my room, send Mark home to the boys, and find myself staring out the window again thinking about life.  I think about how the world continues on no matter how long I am stuck behind these glass windows and walls: life continues to move on.  It's mentally difficult for me to be behind these walls.  I feel I am suffocating, I am constantly wondering what I am missing out on in the world, if I am being forgotten, if I am making any difference, or just adding to the worry of the people I love.   I wonder what I am doing to Mark's life, how I am stealing it from him.  What a different life we are living than we had originally dreamed of.  How unfair it is to make him see me this way: hospitals, appointments, PICC lines, countless rounds of antibiotics, PFT's, cocktails of pills, side effects, exhaustion.  I think it's harder for me to watch him, watch me go through it all.  He tries to be strong, but I see how much it all hurts him, and how scared he really is.   As we walk together through the empty halls of the hospital, I am thankful for the mask that hides my heartbreak.  

Flurries

You cannot watch a snowflake freely fall from the sky and know exactly where it will land.  Nor can you chart the exact journey of your life and where it will lead you.  My life is like a beautiful snowflake dancing upon the crisp air, never knowing its journey or where it will land.

This past week I underwent Sinus Surgery and a Bronchoscopy.  Both surgeries went great, but it was the days following the surgeries we had to be concerned about.  After several days in the hospital I was hoping to rejoin my normal life outside in the world, but my body had other plans.  Monday morning I spiked a 102 fever.  Things didn't look good for me making a case to go home, but don't think I didn't try!  A PFT  [lung function test] was done and had plummeted from the previous week's 50% to 37%.  Another big factor not allowing me to go home.   Treatment plans were evaluated and changed, and a new course has been charted.  My body seems to get better at fighting me every time, but my mere will and strength of mind will always be stronger.  It's time to fight. 

Today, I am so grateful for My Team of pulmonary doctors, ENT, nurses, pharmacist, techs, receptionists, and respiratory therapists who I daily owe my life to: who have all so graciously made me feel like a special part of their lives.   The most gracious and heartfelt gratitude to each of them, always.  Thank you.

My life may be made up of flurries of snow that dance across the frigid South Dakota air, creating a beautiful journey to its destination.   Life has to be shaken up a bit in order for the snow to dance.  This is my life.  Every day is beautiful.  Every breath is a gift.  Love to each of you.

Breathe in that life giving brisk air today, for me. 

Thank you all for the wonderful thoughts, encouragement, cards, messages, and beautiful flowers: they all mean more than you know.

Invisible

Cystic Fibrosis is considered an invisible disease, yet it is anything but.  Meaning, I look perfectly healthy to the unknowing eye, while silently a battle within rages.  CF may be concealed beneath the façade of my body, conveniently hidden from the world around me, but underneath it all it is a relentless disease trying its best to undermine me from within: trying to silently steal every breath.

I've spent a majority of my life keeping any signs of CF concealed from the world around me: hiding my dark eyes and pale skin beneath pounds of makeup, wearing clothes to hide my barreled chest, being conscious of how much I am coughing in public, wearing long sleeves to hide a PICC line, and mindfully deflecting attention from myself in hopes of protecting the ones I love from the realities of CF.   CF may seem invisible to the untrained eye, but it is not.  It's a silent, yet deadly force that affects the lives of so many in my life.

What Lies Beneath

As my CF progresses, it is becoming more and more difficult to conceal.  It may be still invisible to most of the world, but as I look in the mirror, it's anything but invisible. I see CF peering back at me through my own tired, sunken eyes.  I see it in the eyes and faces of the people close to me: a tinderbox of emotion bursting within the silence of their gaze.  I fear that they can see straight into me as our eyes meet. I fear they can see the mess of emotion churning within me, the exhaustion, the relentless war reeking havoc within: that my body is betraying me.  But most of all, I fear they will see how weak I truly am.  

This morning things are as usual: I will go out into the world with makeup carefully painted upon my face to hide the exhaustion that darkens my eyes and paleness of my skin.  The world will see me as healthy, never hovering for a minute on the thought that each breath I am given is such a gift.  CF will be invisible.  

But this afternoon I will walk through the doors of the hospital and be embraced by people I so greatly love and trust with my life.  People who see and know the invisible side of me: my CF Team. People who work so tirelessly to give me another tomorrow, who so endlessly support me every day in every part of my life.  People who help pick up the pieces as I continually try to max out every ounce of life.  My Team never gives up hope.  For each of them, I will always be so truly grateful. 

So, with the guidance of my CF Team, I will be undergoing sinus surgery and a bronchoscopy this afternoon.  I shall be having a bit of an "inpatient retreat" as we monitor my lungs post anesthesia and post surgery. 

My Beautiful Life

It still seems unbelievable to me at times, that my body is literally silently destroying itself from within.  For the most part, my reflection tells me there can't be anything possibly wrong, or if I see any signs of CF, I do my best to simply cover them up.  If it is invisible to the world and to myself it doesn't exist, right? But when I am faced with the images of what lie beneath this façade, the pain, and signs of sheer exhaustion, I am forced to know a different truth.  Invisible or not, I will always have hope that it someday will be completely invisible. 

This morning I will put a smile on my face, be grateful for every moment, every person, and every breath life has granted me.  I am grateful for the life I have been given: the visible and invisible.  Today is just another part of my beautiful journey.  Love to you all. 

What is "invisible" in your life?

Pockets

What do you find in your pockets at the end of the day?  Change? Chapstick? Keys?  Gum?

My pockets are usually filled with cough drops, tissues, and Tylenol.  They're the staples to my daily life: I don't leave home without them.  Let's just say, however, that they aren't such a great combo when going through the wash machine and dryer.  

Frequently, I am asked if I have a cold. I smile to myself and just say yes, as we talk about "that cold that is going around." But really, it's just me. I cough a lot and I have a chronic stuffy nose: all caused by CF.  Most often, especially when I have to be in public, my cheeks are packed like a chipmunk with cough drops.  Every pocket in my life is stashed with either a fresh cough drop or its old wrapper.  The cough drops [without menthol] also help with having a dry mouth due to the side effects of some of the medications I am taking.  

A Hot Mess

Sinusitis is a common complication associated with CF.  What are some of the symptoms associated with Sinusitis? Headaches, congestion, needing to frequently clear your throat, and a gravelly voice. Check. Check. Check. And check.  This meaning, I take decongestants like they're candy and irrigate my sinuses like a swimming pool.  Because the sinuses are part of the respiratory system, they are plagued by chronic infection and inflammation.  Infection in the sinuses can contribute to the level of infection and inflammation in the lungs: making the entire respiratory system a hot mess.

My CF team aggressively treats both the lungs and sinuses, trying to prevent one from fueling the flames of the other's infection.  

Chipmunk Cheeks 

Need a tissue? A cough drop? I am your girl. No, I don't have a cold: it's just the way I am.  And you know what? That's ok.  I am so thankful for the lotion tissues and lemon honey cough drops that help get me through the day.  I am even more grateful for those days when my head isn't pounding and the world seems so much clearer.  I am grateful for each breath that fills my nose and gives air to my lungs.  Honestly, I am just grateful for every breath.  Love to you all.

Reach into your pockets.  
What did you find?