[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?