I'm an independent filmmaker in New York. I recently launched a Kickstarter campaign for a short sci-fi film I wrote and directed about the absurd sacrifices people might make in the future for good health. Here's a link to the teaser. https://youtu.be/FCTSyxgk9PI
I was diagnosed with Crohn’s Disease back in August after I’d lost 20lbs , and could barely stand without getting lightheaded. Since then, I’ve been on Remicade (7.5 mg/kg, 6 week intervals). I’d been experiencing a whole host of inflammatory symptoms including occasional peptic and duodenal ulcers, joint pain, and intermittent fevers for at least 3 or 4 years before my diagnosis. But as is too often the case with young and otherwise healthy patients, doctors were comfortable writing off my symptoms as either unrelated or no big deal. I’m now so happy to say that I’m responding well to Remicade, and most days I’m not in terrible pain.
I’ve been a follower of this website since my diagnosis. So many incredible articles and posts have helped me through flares, but even more have helped me bear the emotional and mental weight of this disease. We all spend so much time talking to our friends and family and doctors about how this disease feels physically, but not nearly enough about how it feels in our feelings.
In fact, I’d been so terrified of allowing this disease to define me, that I was reluctant to even mention my diagnosis to anyone outside my circle of friends and family. Publicly exposing my struggle felt like allowing it to do exactly that. But in choosing to hide, I inadvertently made my successes just as difficult to share. Secrecy, it turned out, was the very concession I never wanted to make.
Fortunately I also know now what it's like to be so wrong about people. Other people have been my salvation this year, and the successes I've wanted to share have only been possible because of the tremendous support I've received. All the people who have adapted their diets to better suit my severely restricted one, all the people who've indulged and encouraged my deep dive into cooking delicious Crohn's-friendly food, all the people who've kept me positive through flare-ups, and most of all everyone who continues to treat me like I'm still capable of doing it all, have already made 2018 such a special year for me. I feel so lucky.
In early February, I was in Burlington, Vermont to direct Some of Her Parts. It's a deeply personal movie, and it was one of the most fulfilling filmmaking experiences I've ever had. And it’s all about the sacrifices everyone with Crohn’s are surely so familiar with making.
See, when I began treatment, and I was told about all the big adjustments I’d need to make to my diet and to my lifestyle if I hoped to help my body heal, I found myself thinking a lot about sacrifice. I reasoned that while I loved broccoli, and while I would really miss broccoli, giving it up to help ease constant pain seemed like an easy cost to bear. But that was only one of the many tradeoffs I was being asked to make. Whether it was trading serious pain and inflammation for massive hospital bills, or just my favorite vegetables in exchange for solid poop, it seemed that the inherent relationship to my disease was one where successful treatment required sacrifice on my part. I wondered about the limits of that; how much would someone be willing to sacrifice for their health?
Would someone trade their entire body to live much, much longer? Would that person still be human? The movie is set in a world where people make that choice. And so it’s also about promoting a more holistic medical care which treats the whole human, and not just the body. I believe that empathy doesn’t just make for better healthcare, but is at the very heart of good medicine.
So please check out our teaser (https://youtu.be/FCTSyxgk9PI) , and consider contributing to our little film. We're almost done making it, but we need help to make sure it reaches as big an audience as possible. I made this movie because I wanted to define my illness, rather than continuing to allow it to define me.
The foundation and its members are already a part of that story, but I hope you'll help me reach an even wider audience. Thanks for reading. I'm happy to answer any questions you have.