Living with Cystic Fibrosis: The Importance of Community

Like my sister, I share the excitement of witnessing plans unfold to premiere our documentary film, The Power of Two, on Link TV in May. May is National Cystic Fibrosis Awareness Month, so the timing is perfect. Did you know that cystic fibrosis (CF) is the most common life-threatening genetic disorder in caucasian populations? Approximately one in 25 people of European background carry the gene for CF and could potentially have a child with it if they marry someone who is also a carrier. So it is more common than most think. My hope, like Isa's, is that we can use our film to inform the public about this illness (including the culture and lifestyle that comes with it) so it is less of a mystery.

The Stenzel Twins | Power of 2/Flickr

For the past five years, our lives have been full with book and film screenings, speaking engagements, and media opportunities. We have been so fortunate that our story has been of such intrigue to so many, even though we try to convey that our experience is not that different from many living with CF who have taught us everything we know. We are the benefactors of countless mentors, comrades and others who have come before us, and struggled much harder than we have. Not only did those with CF who we grew up with show us the joys of illness such as laughter, love and true friendship, but they also taught us about life in general. For some families, CF is only one part of their list of challenges. Some of my earliest CF friends struggled with poverty, divorce, alcoholism or abuse in the home. To such families, how could CF be center stage when there was so much other chaos? These friends taught me early to have perspective, appreciation and to realize the psychosocial impact on coping and surviving with chronic illness.

Isa and I recently spoke at a charity called Katie's Kause, based in Portland, Oregon, that raises money to help families with CF deal with the financial burdens of this disease. Such a group is a godsend to many, and I think how much this group could have helped my childhood friends years ago. Through the hospital environment and charitable groups such as Make-A-Wish Foundation or summer camps for CF kids, many kids with CF with rough home lives were somewhat rescued, raised by other adult mentors who became surrogate parents. Though our home life was far from broken, Isa and I still gained so much from our adult caregivers, camp counselors and healthcare team. I was raised by people of all ages, races, religions, sexual orientations and socioeconomic backgrounds. Without a doubt, that has made me a fairer, better, more open minded human being.

Production Still | Power of 2/Flickr

Today, at 41, I am breathing well, loving life despite having another side effect of CF: bowel cancer. CF seems to be the gift that keeps on giving! Life is not easy on chemotherapy, but I wouldn't trade my present state of being for anything. I have been enriched by this experience and have met the best that humankind has to offer. In this tumultuous world where turning on the news makes me wonder what good is out there, I am in my cocoon of love and compassion through those around me. Just last Monday, one of the CF moms from our local CF charity brought me four bags of baked goods to help me maintain my weight during chemo. Her daughter, who had a rare liver transplant for CF years ago, is now facing lung challenges, yet she still thought of me. This is the kind of love I am blessed with every day.

Production Still | Power of 2/Flickr

I wish it was this fair for everyone. I know there is emotional pain, loneliness and discrimination for many facing illness. I know that meeting others going through similar struggles always eases that pain. Maybe that is what makes the CF community and the transplant community so amazing, or it's just been my experience locally being involved with Cystic Fibrosis Research Inc or California Transplant Donor Network. We take a bad situation and embrace it by supporting others, finding joy and gratitude in the present, and seeking beauty in even something as tough as CF and transplant. I have never met more people who love life and make the most out of it than those in the CF and transplant communities. These are our teachers.

May you embrace the good in your life, seek out the compassion and share the same. Thank you for reading.