[Blog post written by Martha Stai]
65 Roses: the phrase brings to mind flashes of
color and life. You may imagine a garden full of floral beauty and life-giving
splendor. Now picture the full, deep breaths you may take as you inhale that
fragrant, floral perfume. For me, the phrase “65 Roses” unleashes images of a
merciless weed--one that is overtaking my best friend’s “garden of life.” You
see, the phrase “65 Roses” was coined in 1965 when a young boy found it
difficult to pronounce the name of his fatal genetic disease, cystic fibrosis.
According to the Cystic Fibrosis Foundation, “cystic fibrosis is a
life-threatening, genetic disease that causes persistent lung infections and
progressively limits the ability to breathe.” Many who suffer from this
devastating disease never see the age of 40. My best friend, Ashley Ballou-Bonnema,
suffers from cystic fibrosis. Now those roses don’t seem so beautiful, do they?
There are some days when it seems I go through
the motions without fully breathing; when I finally allow myself to rest, I
inhale full, gratifying breaths and feel my body relax and my thoughts begin to
clear. These seemingly unremarkable moments pass me by in a flurry on a
day-to-day basis. In those moments, though, rarely do I take the time to give
thanks for the ability to take those clear, full breaths. Rarely do I reflect
on the ways that my lungs fortify and sustain me. But I should, because my best
friend doesn’t have this luxury. Her lungs function at half the rate of a
healthy person’s, and yet she continues to fight for her right to a happy,
fulfilled life. She is an inspiration to all who meet her; in fact, up until a
few years ago, only a few select people in her life knew that she suffered from
cystic fibrosis. She had found a way to put on a mask of health and vigor so
that the world didn’t have to worry.
All of that changed a few years ago, when Ashley made the brave decision
to share her story with the world. She began writing a blog, sharing her daily
struggles--the ugly truths and the debilitating effects that the disease had
entrusted her with. On the day of her blog reveal, Ashley stoically unveiled
the layers of protection and safety that she had built and allowed herself to
be fully vulnerable. She wrote, “Today is the day. I am removing a
layer of paint and showing the world what I AM, not what I am not. Today
I show the world how grateful I am for each breath, each beautiful person I
know and love, and each opportunity life has to offer.” Now those are the words
of a fighter. Those are the words of someone who wants not only to survive, but
to truly LIVE.
The world was desperate to hear Ashley’s story;
in the span of a few years, her blog, Breathe Bravely, has gained
hundreds of thousands of followers and has gained recognition from the Huffington
Post on dozens of occasions. She has been named one of Augustana
University’s “Forward Under 40” for her efforts to make the world a better
place. She has also established the nonprofit organization“Breathe Bravely”,
which is dedicated to giving voice to cystic fibrosis, and has released her
first book chronicling her story. Her testimony of living life to its fullest,
despite the demon that tries to stifle her fire, is one that the world needs to
hear. Ashley is a wife, daughter, friend, musician, teacher, quilter, and
traveler. But most importantly, Ashley is a survivor.
Ashley courageously battles cystic fibrosis every day. Her morning
routine involves gulping down a cocktail of prescription drugs. The side
effects of each of these pills range from nausea to insomnia. Her sleepless
nights are spent anxiously pondering the uncertainty of her future. The
hospital has become her home away from home and her care team is on speed dial.
Ashley’s disease has stolen her innocence and replaced it with
apprehension, yet Ashley still strives to find the beauty in every day. So
tomorrow, or the next day, when you find yourself out of breath after running a
mile or talking excitedly to a friend, remember this: each of those breaths is
precious, and my friend Ashley is one of many cystic fibrosis survivors who is
fighting for the very next breath. Ashley’s story reminds us all to breathe
bravely.
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