Monday, April 28, 2014

In Sickness and in Health


[Blog entry created by Mark Bonnema]

I live with Ashley, and WE live with CF.  CF (cystic fibrosis) is absolutely a part of our relationship and our household. It affects our day-to-day comings and goings, and it has a voice in our future hopes and dreams.  Everything we do, everywhere we go… CF is there with us, tagging along and lurking in the shadows.  Since Ashley began writing this blog, many friends and family have gained a new understanding and appreciation for how CF affects Ashley and how she strives to “breathe bravely” despite the effects of CF in her life. Today, if you have the time, let me clue you in about how we cope with CF as a couple.

Ours is not the only relationship that requires some delicate balancing and coping with the demands of a chronic illness. According to the American Association for Marriage and Family Therapy (www.aamft.org), somewhere in the order of 35 million Americans live with a chronic mental or physical health condition. Every couple or family that is forced to navigate life with a chronic illness must find their own unique balance, but here are some lessons Ashley and I have learned throughout the years.
 
1    In sickness and in health.  I signed on for this. When I asked Ashley to marry me and when we made our wedding vows to have and to hold… in sickness and in health, we made a covenant to love and support each other no matter what the future may hold. Did we want a life with CF, doctor visits, hospitalizations, PICC lines, medications, and vest treatments? No. But, our desire to live a life together was greater than our fear of living a life affected by CF. CF may try to slowly take Ashley’s breath and health away, but we refuse to let it take our admiration and respect for each other away.  We choose to love each other each day, no matter what challenges or stresses CF puts in the way. CF cannot take away our ability to choose love and to daily choose life with each other.

       Externalize. Perhaps you have noticed my referring to CF as its own entity, almost as a separate member of our family. In our attempts to cope with the demands of the disease, I think it helps for us to “externalize” the chronic illness, giving it a persona and character apart from Ashley so that Ashley and CF do not become one entity. Ashley is so much more than the disease she is forced to live with. She is beautiful, witty, caring, and giving. She is a writer, musician, wife, daughter, sister, cousin, and friend. CF is an unwelcome and unsolicited reality in our lives. Treating CF as an “outsider” or unwelcome intruder into our relationship and family makes me feel like Ashley’s partner and teammate, combating the disease with her. The CF is responsible for a lot of pain, heartache, messes, fatigue, and lost time in our house, but never do I take that out on Ashley or treat her as the problem. The CF is the problem, she is the one I love and the one whom I seek to support in the fight against CF.


      Be patient and flexible. Ashley may not sleep well for several days, and then want to sleep for hours on the day we are supposed to go somewhere. She may practice music for a whole afternoon, and then have no energy left to help with dinner or the dishes. We may have plans to go out or see friends, but then begin coughing up blood. We may want to go on vacation in the mountains with friends, but then realize the altitude would wreak havoc on her lungs and blood oxygen saturation. CF keeps us on our toes. It constantly throws curve balls at us. We never know when to expect an exacerbation or complication. We do not know for how many years Ashley’s lungs will be able to maintain her musical endeavors and career. So what does it mean for us to be patient and flexible? Realize some seemingly simple tasks may take Ashley twice as long as most people. Realize we may need to be prepared to reevaluate and redefine our hopes and dreams for the future at any time.  We learn to expect the unexpected, and be grateful when things actually go according to plan.

So there you have it, my rendition of how we as a couple cope emotionally and relationally with the demands of CF.  While we cannot ignore its presence or pretend CF does not exist in our relationship, we refuse to let CF be a defining part of who we are and who we want to be. We fight CF by choosing to love each other every day, remembering CF is the problem, and expecting the unexpected. 

What interferes with your relationship(s)? How will you fight to keep your relationship in balance?





4 comments:

  1. Beautifully written, Mark! I love how you have externalized CF and have not allowed it to change or diminish the essence of who you both are. Your story is touching more people than you'll ever know. Just thinking about you inspires me every day. I have nothing but complete admiration and respect for you both! Love you guys!

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  2. Unbelievably well put! What a beautiful relationship you both have. Thank you for sharing your incredible insight!

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  3. What a great post. Thank you for sharing. I have CF too! And sometimes I blog about it http://ohgretch.wordpress.com/2014/02/28/in-sickness-and-in-more-sickness/
    I'm friends with Brooke Vasilko, and she told me to check out your blog. So glad I did.

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    1. Oh, that dearest Brooke, what a beautiful spirit she has. Thank you for connecting with me and thank you for the link to your blog! It is most beautiful! Wishing you all the very best, dear friend!

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