I work with others on a long-term project, which I’ve been donating my spare time to, on and off, for almost twenty years. It’s a documentary film about an inherited, essentially terminal disease called Cystic Fibrosis. I was not born with it myself; but four of my siblings were diagnosed with this life-shortening condition for which there is still no cure.
There are incredible advancements in treatment for CF patients. These advancements have allowed for a better quality of life, and a longer life- expectancy from even ten years ago. But patient access to newer “triple-combination therapies” is still fairly limited in many countries, even in some developed western nations. Triple-combination therapies (and newer treatments coming down the pipeline) address not the mere complications of Cystic Fibrosis, but its very root cause---the defective CFTR gene.
It's part of what we make light of in our documentary. This extraordinary medicine is out of reach, financially, for too many of the approximately 70,000 men, women, and children living with Cystic Fibrosis worldwide. The advent of social media heightens a sense of urgency; CF patients who currently do not have access to triple-combination therapies can see on their smartphones every day that this medicine is helping patients elsewhere.
I remember when I was a boy, and Gramps (instead of Mom) picked me up from school one afternoon. My little sister Rose had been hospitalized with a sudden exacerbation, and a collapsed lung. Mom was with her at the hospital. I remember trying to picture in my pre-adolescent mind what a collapsed lung might look like, as I rode home with Gramps. And I vividly recall the time surrounding Dillon’s birth in the Spring of 1992, when he was born with CF complications related to a dire intestinal obstruction. As a newborn infant, he was hospitalized for months before he fully recovered from surgery. Finally, it took a very serious exacerbation for Lindsay, along with a prolonged hospital admission, for me to wake up to the seriousness of this disease. “Lins” and I were both young adults when she got very sick. My sister and I are close in age, and in sentiment. I wanted to learn all that I could about Cystic Fibrosis. That was back in 2003.
Growing up, I had seen manual chest physiotherapy (CPT) performed on my sisters many times. This involved one of our parents beating lightly on their backs and chests with cupped hands, in order to loosen the thick mucus in their lungs, so that they may cough it up and get it out. When “The Vest” came along (a mechanical device and time-saving therapy for airway clearance), I saw the kids doing that on a daily basis as well. At the time, I did not fully understand why they were doing these things.
Suffice it to say, I have a personal connection to this disease. I believe in this project, its mission---further examination of a terrible chronic illness---in telling an intimate, honest, and relatable story. It's a story told, in part, with decades-worth of home movies shot by my father. There was a moment years ago when I decided to start capturing Lindsay, Rose, and Dillon, with their consent, as they lived with CF. I put down nearly three thousand on a credit card and bought a decent camera (for 2006), a DVX100B, and began taking video; in the editing room, I would mingle all of the new footage with that recorded by my father.
What I’ve captured is multi-format footage of the kids doing the “normal” things in life. It’s about the good times. But it’s also a record as they explain their routine treatments, and as they go to doctor’s appointments. It follows them as they endure numerous hospital admissions. There is even commentary on the pitfalls of opioid use. We explore what drives someone (in this case, one with chronic illness) to addiction. It's been a national emergency for too many years. It is still an emergency. Many of us know someone who has been menaced by the opioid crisis. It's important that I document how it has affected us.
“Our Family & CF” is the title. It’s a story of family, adversity, and hope. The footage is being compiled into a 90min film---I do all the editing myself---an homage to the values we hold dear. It’s a love story that spans five decades, beginning with the death and subsequent CF diagnosis of my older sister Kelly, at the age of five months---back in the dark ages of Cystic Fibrosis care---in 1976. As a baby, she had exhibited a “failure to thrive.” She was brought to a hospital in Miami, Florida. Within a week, Kelly died there.
It was in an era when even the best medical caregivers did not necessarily have the knowledge to diagnose or treat CF. It was long before the days of The Vest or triple-combination therapies.
I wish you well in your endeavors. Think of this blog as a place for you to share your writing, photography, artwork, fundraiser, or general thoughts. We especially welcome the work of those in the community with chronic illness, and those who know or love someone with chronic illness. If you please, share our Website & New Blog via email and social media. Thank you, I appreciate your time. It's a busy world, and too often lately it seems like a crazy world. But keep your head up.
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~ Jason
Director, Producer, Editor