Why I'm doing this film
Updated: Apr 29
I’m an independent filmmaker. I’m largely self-taught as to the technical, creative, and business-related facets of such an undertaking. 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. And 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. Though at the time, I did not fully understand why they were doing these things. Our parents never sat me down and explained exactly what Cystic Fibrosis was. In their approach, they wanted those diagnosed with CF in our family to be treated (and to feel) like “normal” kids.
Suffice it to say, I have a personal connection to this disease. I believe in this project that we’re working on. I believe in 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, edited down to something manageable, coherent, and enlightening. There was that moment years ago when I decided to start capturing Lindsay, Rose, and Dillon, with their consent, as they lived with this disease. I put down nearly three thousand on a credit card and bought a decent camera (for 2006), a DVX100B. I 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. Regarding these highly addictive painkillers, we contemplate the absolution for their manufacturers in how obscenely available opiates were to just about anyone, before databases began keeping track of who was getting what, and how much, and when...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.
This project has been one of the greatest challenges of my life---logistically, emotionally, and spiritually. But I’m compelled to stay with it in my free time (going on decades now), amid various ups and downs. I have to shed more light on this affliction that has now claimed the lives of three siblings. I feel strongly that if we get post-production done, get the film distributed, get it seen, there is potential to help someone (Ex. In telling their story and exhibiting the long-term effects of CF, if we can convince another young patient out there to rigorously stay on top of their prescribed treatments, the film will do good).
“Our Family & CF” is the title. It’s a story of family, adversity, and hope. The footage is being compiled into a 90-minute feature; I do the editing myself. It’s 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 come from a modest background. Growing up, my father was the sole income for the household. He did hard labor for most of his life, working as a service technician for a telecommunications company. When I was young, I would work with Dad in the garage on his off days, helping with the holiday lights, and other tasks designated for the oldest son in a large family. I too did hard labor, helping him crawl around in various attics and crawl spaces to install wiring for security systems, doing yard work, and other odd jobs. Hard physical work is all Dad knew as the path forward. He said to me when I was approaching adulthood, “Son, if you want something, go out there and get it. Because your mother and I don’t have the money to send you to college.”
The words stay with me to this day as I earn my Bachelor’s degree, and learn a new trade. Slowly coming out from under the economic effects of a global pandemic, as everyone is, I choose to balance time in committing to my creative endeavors. It is challenging. There are inherent sacrifices---sociological, material, logistical---but creative expression is what I do, whether it's personal or professional in nature. There is comfort simply in sitting down and writing, for example, just as I write to you now.
I wish you well in your endeavors. Think of this new 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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Director, Producer, Editor