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Reflections on My Skin's On Fire

by Fred Finkelstein

Fred Finkelstein is the producer/writer/director of My Skin's On Fire, the first documentary about living with psoriasis, produced by a psoriatic.  Click here to read my review of the film in my Nov-Dec, 2005 "Briefing," and read the FlakeHQ Interview with Fred Finkelstein from the Mar-Apr 2006 update.  Earlier this year, Fred started a multi-city tour in cooperation with the National Psoriasis Foundation to show his film to gathered audiences and promote membership in the Foundation.  I asked Fred to share with us his thoughts as that road show wound down.  -Ed

 

The First Stage

It never occurred to me in August 2002 when I had my first meeting with Gail Zimmerman, President and CEO of the National Psoriasis Foundation, that some four years later we'd be having drinks together on a weekday night at 11 PM in places like Dallas, Los Angeles, Portland, San Francisco and New York. The ways of the world are sometimes strange, sometimes unexpected.  

For it was on that day in August that I first presented to Gail the idea that had been percolating inside me for over twenty years — that it was important, no, that it was ESSENTIAL, that someone create a film about the impact of psoriasis and psoriatic arthritis on the individual who lives with these conditions on a daily basis. 

And so the first question I asked her was the availability of material on the subject — what, I wanted to know, had already been done to focus on these illnesses from the perspective of the emotional and psychosocial areas of life?  Where in her video library were the films/videos that helped clarify the profound impact that P and PA have on so many of us?  What could I draw on, and possibly reference, that would help me to direct a work of meaning and importance, not just for myself (my harshest critic), but for the community at large?  The answer, my friend, was blowin' in the wind.  For better (or worse), there was nothing to be found.

Leaving the offices of the Foundation that day, I was filled with a sense of purpose and a realization that it would be me who would actually create this moving-image document that has come to define so much of my life over the last four years.  And of course I would have no way of knowing in what directions I would venture forth, what cities I would visit, and what lives I would touch on my journey.  And now that I've traveled to nine cities (eight of these with the Foundation, and one, Grand Rapids, Michigan, on my own),  I've met some 400 people, many with psoriasis and psoriatic arthritis, and many connected to these folks through either marriage, partnership or friendship.

The Big Splash

In September, 2005, with the film complete and “in the can,” I was flown off to New York City by Genentech, the principal sponsor of the film. This would be my “Hollywood-style” debut, and I had better enjoy it!  I was put up in fancy hotel, wined and dined, and along with Dr. Mark Lebwohl, a leading dermatologist in New York, conducted a series of radio interviews.  Mark also appears in the film and has been a tremendous advocate for the Foundation and its members.  The screening was held at the Tribeca Film Center in Manhattan, the facility founded by Robert De Niro and a host to its own film festival.  Over fifty invited guests attended, including my family, and it felt very much like a “coming out” of sorts, a cross between a film premiere and my Bar Mitzvah!  Everything went smoothly, yet I was so nervous and excited that over the next few nights I barely slept at all.

In the audience was Mike Laub, a wonderfully generous and compassionate man who is active in the Foundation and its Capital Campaign.  He immediately saw the potential to utilize the film as an educational outreach and fundraising tool.  Four weeks later, he flew me back to New York and arranged for the film to be shown at a Fundraising Event that he organized for the Foundation.  People, friends of his who knew little about the disease, were quite taken by the film.  Many called the next day and told him how powerful the work was and what an impact it had on them!  Both Mike and I knew that this was the beginning of an important opportunity to bring the important messages of the film to as wide an audience as possible.

Over the next four months or so, the Foundation, spearheaded by Development Director Terri King, began formulating plans to bring My Skin’s On Fire to its own members.  The “Road Show” was forming to visit select cities, with myself, Terri King, and Gail Zimmerman in tow, reaching out to Foundation members and their families and friends, and hoping the film might motivate people to reach beyond themselves and contribute to the mission and mandates of the Foundation.  And with my face now on the cover of The Advance, the national magazine published by the Foundation, a real buzz was starting to circulate the message boards.  And my interview on this venerable web site was about to appear.  By the time people actually began receiving copies of the film (March, '06) the word on the street was quite positive.  People were “aglow,” and now was the time to strike while the iron was hot!

The Next Step

We needed an anchor.  All of us — especially Gail, Mike, and Terri — knew that a mechanism needed to be in place in order to draw Foundation members where we took the show.  The Support Groups were the natural magnets to attract our audience.  After all, a city with a strong Support Group in place has a built-in audience that is eager for information; they also have a direct line to local dermatologists, derm nurses and others in the extended psoriasis family — including, of course, actual family members!

And while the task of approaching the Support Groups was organized by Terri, and the travel arrangements made by Eve-Maridy Rice, it fell on me to decide how to present myself to the Groups.  How would I would I introduce myself AND my film, which is both a part of me and distinct from me, an organism unto itself that impacts people in ways both dramatic and subtle.   I decided to say as little as possible (not an easy task!), and to follow the dictum that “a picture is worth a thousand words.”  And so we started the DVD player, sat back, and let it unfold. 

The Aftermath

There's always a pregnant moment after the final credit rolls by and the lights come up.  And while every audience is different — just ask any stage actor — I've observed that the feeling in the room is often quite strong.  People, mostly those with psoriasis and psoriatic arthritis, especially if they've just seen the film for the first time, are deeply affected.  Sometimes you can even hear a sniffle or two, and spot an eye that is filled with tears.  In these moments I never really know what to say, and perhaps not saying anything is best.  Of course there are times, fortunately not very often, when an audience merely applauds — and there's nothing else. I recall one city where there was no audible reaction throughout the entire film — not even a chuckle during the humorous sequences. Are these people comatose, I wondered?

When people do speak, which is the rule, I've felt as if I've really made a difference in the lives of these folks and their partners. In Portland, a man approached me afterwards and confided that in the ten years he was married to his wife (who has the illness), this was the FIRST time that he really began to understand what she goes through on a daily basis. I was stunned. It's inconceivable to me that someone who sleeps next to someone every night for ten years is not deeply impacted by their partner's condition, especially a condition so visible and disturbing. It made me wonder about the very nature of relationships — or at least THIS relationship, and what it took to create a shift of consciousness, so to speak.

In Los Angeles, just as I was about to say something after the film, a man leapt up, ran up to the front of the room and took the microphone. He then took off his shirt, which revealed a chest and back completely covered with plaque lesions.  He then told us of the tragedy of his marriage and of his wife's unwillingness to share a bed anymore. He converted our audience into a 5-minute Support Group: it was simultaneously sad and utterly beautiful.

What these events tell me is that My Skin's on Fire has given people permission to access feelings they were either unaware of or too uncomfortable to share publicly.  By exposing myself, literally, I somehow opened the door for others to step forward and proclaim their illness before themselves and their families. A wise teacher once told me the act of embracing one's vulnerability allows one to step into his or her strongest self. For me, creating this film has given me the strength to do just that. It somehow liberated me from the shackles of my own self-loathing and negation. And of course I hope that others who continue to see the film, either in the context of their home or in a group setting, will also feel a sense of validation and acceptance. And perhaps they'll look at this short, skinny guy from New York and realize that all of us with moderate to severe illness, no matter what we look like to the outside world, understand each other oh so well. And we all know that understanding dispels myth and leads to greater awareness.

The Future

With eight “official” cities under our belts, and 'Walk for Awareness' committees now forming to organize for community outreach and fund raising, the road show has left an impression on communities around the country. We still have at least two more screenings — one in Aventura, Florida (near Miami), on September 12. And one in another city, probably on the West coast, yet to be determined.  Am I pleased with this act of outreach and community education?  Yes and no.  Yes, because I'm facilitating the transmission of an important human story to members of the community where that story has unfolded. And no, because not enough people have seen the film and I won't be satisfied until many more do. 

So I'm working to get the word out about My Skin’s On Fire while seeking sources of funding that will enable me to continue to visit other cities and connect with more people in our community. After seeing the film, I hope that folks will acknowledge the parts of ourselves that are both visibly affected by psoriasis and also invisibly affected.

I'm a very fortunate man, and over the next year I want to continue to share my film with as many people as possible.  -FF

P.S. - I am pleased to report that On July 15, Portland held the first 'Walk for Awareness' for psoriasis and over $13,000 was raised for the National Psoriasis Foundation. -FF

*****

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