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?