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FlakeHQ Interviews:

Fred Finkelstein

My Skin’s On Fire

Interviewed by Ed Dewke  
in February, 2006

Being in the media business myself, I was keenly interested in Fred Finkelstein’s project when I first read about it in the National Psoriasis Foundation’s magazine, Advance, in 2004.  This was a brief article announcing the project, which was, at that time, still seeking enough funding to pull it off.  Then, as I was conducting FlakeHQ interviews in 2005, a couple people off-handedly mentioned the project — Ed Anderson was particularly well informed and even appears in the film.  I think Fred showed the film first to the San Francisco Bay Area/Peninsula Psoriasis Support Network and a little later it debuted with fanfare in New York, arranged by Genentech, the film’s chief sponsor.  I was among the first people to ask Genentech for a copy of the DVD and over the past several months I’ve watched it several times. 

It is a landmark production.  For a long time to come, this film will be the emotional outlet we share with people who are seriously afflicted with P and PA.  For decades (or centuries) after psoriasis is cured, this film will be the historical “footage” that tells the definitive story of what it was like to live with these diseases. 

Fred worked in portable video during its early years, beginning in 1972, principally in community video, which involves using the medium to increase communication between and among members of a particular community.  He took breaks for extended periods in the late 70's after he was diagnosed with psoriatic arthritis and it became increasingly difficult for him to carry equipment and keep “motivated to be productive.”  In 1983, he studied at the NYU Film School under famed documentary filmmaker George C. Stoney, who was also known as the 'father' of public access TV.  Fred says Stoney was responsible for “refining my attitude about what can be accomplished through documentary video.”  Prior to launching his project that became My Skin’s On Fire, Fred hadn't produced anything in over twenty years.

I’m personally extremely grateful that Fred decided to produce again.  -Ed


Ed:  Obviously, a lot of your film's impact stems from the fact that none of us who know this disease so intimately have ever seen it portrayed like this in a documentary.  The film has a pace, a tone, and an emotion that is quite distinctive — largely the product of editing, music and narration.  Tell us a little bit about your film's style — what you wanted to accomplish — how you did it.

Fred: In business they say the secret of selling is buying.  In other words, the success of attracting buyers happens when the merchandise in the store is appreciated by the customers — they value it and they want to buy it.  Editing a documentary is a bit like this as well.  My editor can't craft a powerful piece of digital video unless the material I bring to him, the 'merchandise,' is good.  I think you can see that Pad McLaughlin, my cameraman and director of photography was able to make our interviewees not only look good, because of the exquisite lighting he sculpted, but also capture them as open while also being both vulnerable and at times quite strong.  This is where my role came in as interviewer, and because I've had psoriasis and psoriatic arthritis for more than thirty years I knew what to ask them, which put me at a very different vantage point than nearly any other documentarian/director!  That may be an exaggeration, but you see my point.  In this genre of filmmaking, the interviewer is typically the 'detached observer,' asking questions of a 'subject,' dispassionate in  their role in the attempt to create a 'balanced' perspective and hopefully some dramatic tension as well.  Clearly, these illnesses have invested themselves so thoroughly into my life that I could never be 'detached' in my perspective.  So no, there was no unbiased or clinical detachment in my approach.  My assumption from the get go was that psoriasis and PA, at least for those of us with moderate to severe illness, is so challenging and so often painful on the emotional and psychosocial levels that these things more than the physical characteristics of the diseases would have to shape the very personal perspective that I bring to the table. 

So, this material that I brought to Carl Weichert, my amazingly skillful editor, was already filled with passion and insight born out of all those years that so many of us have suffered.  I think that kind of drama lends itself to being shaped to such powerful effect, and Carl (with my difficult self occupying the other chair for about 80% of the time) had the 'merchandise' that made 'selling' it so much richer and fuller.  No sale needed on this stuff!

For many years, in a typical Hollywood film, or even in an industrial commercial for that matter, the story was tightly scripted and was 'story-boarded' out, shot by shot.  There was no room for spontaneity or the unexpected.  But in the early 1960's, 16mm film cameras got lighter. Out of this technological change grew cinema verité, a  style of movie making that allowed directors to move around more freely, often  doing hand-held shooting without a tripod, and this impacted and ultimately changed the landscape of the narrative as well because subjects were freer to talk about their lives while they were living them — like riding the bus to work, or whatever.  Today we use even smaller digital video cameras to do cinema verité style.  Though the verb “to film” or “filming” is still widely used in the industry, we actually videotaped our interviews in the new digital format.  While we most often did use a tripod while conducting interviews we also borrowed from cinema verité in capturing people living their lives in this way:  Diane Lewis showing us the hospital gown that was her Master's thesis in art school, Jody and Gene cooking a meal, me taking a shower, etc.  We wanted to show people IN their lives, not just talking about their discomfort. In this process the story was 'revealed' to us through looking at hours and hours of people's experiences living with psoriasis and psoriatic arthritis.  Though we didn't have a story board, we did have the feeling that we would need to start with the basics, go through the onset and symptoms of the disease(s), move into some treatments, return to the emotional and psychosocial challenges, and build the piece so its arc would crest at emotional hell, so to speak, but then move into emotional support, the National Psoriasis Foundation, political action, into a psycho-spiritual realm, some science stuff and ultimately begin to express the hope and possibility that now really does exist for so many of us.  I didn't know shot-by-shot how I would lay the piece out, but I did have some themes that I wanted the film to express, and so we allowed the material to 'reveal' itself to us as we shaped it and gave it life.

I knew that I wanted to have a violin for the principal music.  Carl told me on the first day that he had never heard of a violin used as the lead instrument in a documentary, but intuitively I knew that I needed a tone of deep emotion to delicately support my narrative.  Of course there's a danger here.  It's not that difficult to veer over into mawkish sentimentality, to use the instrument to convey a kind of hopelessness and victimization that leaves the viewer feeling bad.  I didn't want that, and I think that Christina Mok, the brilliant violinist who composed and performed nearly all of the music in the film, was able to bring out the drama of the narrative and enhance the intensity of our story, but with a degree of restraint.

My narration was actually the most difficult part of the film for me, not only because of the logistics in having to shoot 5 or 6 takes for each of the narrations that I wrote, but also because some of them were filled with the pain of my life with psoriasis, and even before it, so it forced me to re-experience a lot of the emotional pain I’ve been through, even before I got sick.  But stylistically, my narrative suited the structure that I wanted to build into the film. 


Ed:  You interviewed quite a few people for the documentary.  In your Advance interview (January, 2006, National Psoriasis Foundation) you explained how you came in contact with the San Francisco Bay area psoriasis support group.  Had you been involved with such groups before working on the documentary?  Do you remain active in any support groups?

Fred:  I first connected with the Bay Area Support Group in San Francisco (BAPSONET) about ten or eleven years ago.  I can't remember what the initial impetus was for me to contact them, but having joined the National Psoriasis Foundation in 1991, I knew that there was a structure in place for me to plug into should I have the need. I probably was doing just fair at the time, physically speaking, but it's difficult to remember.  Living with this condition is often such a roller coaster ride that I might be doing OK for a while, then suddenly flare, and then be doing OK once again. I'm sure I was somewhat apprehensive in taking the first step, as I was more tentative about this kind of experience at that time in my life, but I do remember contacting Diane Lewis, who was the leader of the Group.  That's when I first met Ed Anderson and Ed Reiss as well. I immediately felt comfortable being with a group of people that understood what I was experiencing, while also feeling privileged to share in their own very personal struggles.  For me, having been quite isolated in my life in general in the years leading up to my joining the Group, and having only a few friends, I had been acutely feeling the burden of living with psoriatic arthritis. So I was finally glad to have those monthly meetings to attend. After some time though, Diane took off on a journey through Europe and Asia, and the energy of that group dissipated, at least for me. So it was years before I reconnected with the Support Group that I am now a part of (and which formed about a year ago), the San Francisco Bay Area/Peninsula Psoriasis Support Network headed by Jody Kim-Eng.

Once you actually summon the courage to show up at a meeting, you can feel the welcoming quality that these groups provide. And that's why I wanted to highlight a section of the film on the Groups, as they are critical in helping people cope with and accept their illness; they are also instrumental in providing resources and information that can often make a profound difference in one's life, especially if one is isolated, as so many of us are. And even if people are partnered they may need and can benefit from that special quality that the Support Groups offer.

Whether you are single or partnered, the impact of the illness is isolating — I mean, how many of us are comfortable walking around in shorts on a hot summer day with our legs covered with psoriatic lesions?  So people's lives are enriched by the nurturing and accepting quality that a Support Group provides. At the same time, when people are doing well, they often have less of a need to be in the Group — after all, what's there to talk about if you're clear? And why would you want to be associated with a group of people who are often suffering with a condition that you're not experiencing at that time?

And with this in mind I'll share an experience that took place at the beginning of this project. The Foundation had initially done a story about My Skin's on Fire about two years ago. Immediately after that article in the Advance came out, I got a call from a young guy in the Central Valley in California, a Latino immigrant who had recently come to the States and was suffering a great deal from his psoriasis.  He really wanted to get involved with our project, and I told him that when we got the equipment together we'd come down and do an interview with him.  So about four months later I contacted him and, lo and behold, he had started a treatment and was clear — and he had no desire whatsoever to talk about his psoriasis — out of sight, out of mind!  Shortly after that incident, I interviewed Gail Zimmerman, and she told us that when people get clear or start to really improve, especially for a long period of time, they often don't renew their Foundation membership.

What can we imply from this observation?  I'm not quite sure, but perhaps as the quality and availability/affordability of treatments increase, and as people subsequently improve dramatically, there may be less of a need to come together and commiserate collectively.  Until that time comes, however, I think that the role of the Support Groups in the psoriasis community will continue to be ever-so-important.


Ed:  Right now copies of the documentary are being given to people who sign up on Genentech’s web site.  What other plans (or dreams) do you have for distributing My Skin’s On Fire? 

Fred:  A video producer once told me that you start at the end and work backwards. Before you even think of beginning the project, be clear about who the intended audience is and how you'll reach them. In my own mind, I knew from the start of My Skin’s On Fire that I had to focus on audience/distribution, then take a step back to post-production, then production and finally pre-production, the very beginning. I found that way of thinking quite helpful.

In a certain sense that final step is the hardest to realize. Assuming you have a good idea and there's an unmet need you can usually scrape together a little money and negotiate for equipment and a crew, but finding your audience and getting them the finished product, well, that's the challenge. And most all of the funding/arts agencies that exist will insist on you spelling this out before they'll even consider giving you a penny. And you can't just say EVERYBODY.  You need to be specific in your audience/distribution plan. So for us, it was quite obvious that we wanted (and still want) to connect with the greater psoriasis and psoriatic arthritis community, which may extend to some seven million people.

I also need to say that even before I wrote two words on a piece of paper I approached Gail Zimmerman (President of the National Psoriasis Foundation), and ran the idea by her. She told me that to her knowledge no one had ever produced a film/video on the emotional/psychosocial impact of the disease on people's lives. I took that as a sign to move forward and started putting together my ideas on paper, which eventually took the form of a grant proposal. Sometime after that first meeting she greenlit the Foundation to provide me with some seed money, which helped me to get more money and to produce a 5-minute Funding Clip, which was seen by Genentech [pharmaceutical company; makers of Raptiva -Ed].  The rest, as they say, is history. 

What's important here in terms of distribution, though, was my initial feeling that a powerful film about psoriasis and PA had the potential to reach many people in the community, many of whom are unfortunately not members of the National Psoriasis Foundation.  I honestly didn't know how to do that, but because Genentech has purchased 5,000 DVDs (I know, it's pretty amazing), I'd like to believe that at least that many people will eventually see the piece.

So at his point there's a mechanism in place for people to see the film by simply going to and ordering a free copy. However, my ambitions extend beyond even this most wonderful arrangement.  Beginning March 21 I will be taking My Skin's on Fire on the road. The 'Road Show,' as we're calling it, will travel to at least 5 cities, possibly as many as 8 or 9.  I'll be screening the film before Foundation-member audiences. So if you are a member of the organization and live in one of the targeted cities you should receive an invitation, and if you're not a member please join now! We start in San Mateo on March 21st, then go to Portland for a showing on March 28, Santa Monica on the 30th and Lewiston, Texas, on April 20.  We may be going to other cities, as well.  All events run from 7:00-9:30 p.m. and this is a toll-free number people can call to R.S.V.P. or get more information:  800-723-9166.  The screenings will be held in conjunction with a Fundraising effort by the National Psoriasis Foundation.  And I know that some of the Support Groups around the country have already and will soon begin to screen the film on their own.  So this 'Distribution Plan' of reaching out to folks with P and PA will hopefully bring home the messages of the film in a very supportive environment — a bit like being at a large Support Group meeting!

Finally, I would add that every filmmaker's dream is to have their work seen by as many people as possible — even though they can't say that on their grant application.  So I've entered the piece into a number of film festivals around the country.  So far I've had no takers.  Now it's possible that this project is too limited in its design to appeal to mainstream audiences.  This really depends on the individual programmer and what their criteria is. PBS is probably not in the picture, largely because they rarely consider showing works that have sponsorship from a corporate entity.  THEY want to determine who funds the works they show.  But who knows?  I think ultimately, though, I'd like the film to find its way into the dermatology/medical communities, whether that be with dermatology residents, nurses, in clinics, or with the very people who initially stepped forward to share their lives with me.


Ed:  Your life with psoriasis is now well documented.  You have also proven yourself to be a powerful storyteller.  Would you indulge us by imagining in words what it was like to have P & PA in 1906 and compare that to your experiences 100 years later? 

Fred:  If I developed psoriasis or psoriatic arthritis in 1906 I would have wanted to be living in a warm climate with access to plenty of natural sunlight; or barring that, to have the resources to procure a mercury quartz lamp of questionable efficacy. Of course there were plenty of natural substances available — plants, herbs and the like, and who knows how effective they would or would not be.  In some sense it might be no different than trying a biologic drug today and not knowing if it will help.  On some level, until science begins to map out our individual DNA signatures, we won't know if a treatment is going to be effective, harmless or toxic until we try it.  That's just the reality of living with psoriasis or ANY chronic illness.

There are a host of treatment options available today that never existed 100 years ago. And looking at the big picture there will be even more options 100 years from NOW. But on some fundamental level the very presence of psoriasis in our lives creates a tremendous challenge for those with moderate to severe illness. And obviously the mere presence or availability of a treatment doesn't guarantee its delivery because insurance companies, HMO's and unwieldy bureaucratic frameworks can sometimes impede access (or in some cases interrupt it). So yes, we're better off today than we were 100 years ago, but for many of us we're still not where we need to be. And that's just on the physical level of our existence.

I make a distinction between the physical and the psycho-spiritual levels of existence because many of us know there's a difference between pain and suffering. Jon Kabat-Zinn (featured in my film) talks about that in one of his books, and I think that's really crucial in understanding the impact of this disease on our lives. There are those unique individuals who are literally covered with psoriatic lesions and never take it personally.  They seem to be able to transcend any feelings of worthlessness and self-negation.  I’m not one of them.  Myself and people like me do take this very personally, and I think that's what's really tough about living with psoriasis. And that's what I tried to depict in my film. Just listen to those voices and the expressions of not only pain but deep suffering and it becomes crystal clear how devastating its impact can be on the emotional and psychosocial areas of our lives. And that impact is of course what fueled my need to harness my creative juices and dive right into the belly of the beast.

And that's why the Support Groups that the National Psoriasis Foundation offers to us are so valuable as well. Because unfortunately, many dermatologists that I've seen aren't equipped to take on the huge burden that psoriasis presents.  They don't have the time and many clearly don't have the training or desire to be emotionally available to their patients. So we can be very much alone in dealing with that. Over many years I've come to understand that you can't come to terms with ANY deeply challenging condition until you're able to somehow own your utter helplessness and vulnerability in its presence — which for many of us is every minute of the day — and then begin the hard work of accepting it and continuing to build and support the resources — medical, emotional, political and spiritual — so as to INTEGRATE that challenge into your life and create some kind of inner peace. And please don't interpret this to be formulaic in any way — it rarely is. Some people do seem to have the ability to do this with greater ease than others — we're all uniquely individual so clearly we all have to find our own way in this process — and it is a process.

As I write this — alone — I'm acutely aware that I'm just ONE person, really.   But my isolation motivated me to get together with others who have psoriasis and psoriatic arthritis, and I found that extremely comforting. So am I hopeful for the future?  Absolutely! I'd just like to be around when they find a cure to this disease so millions of us around the planet can breathe a sigh of relief.


Ed:  Fred, thanks for your time.  Your words here are obviously as deeply felt as the sounds and images in your remarkable film.  Thank you for your wonderful contributions to our health and our sense of well-being.  -Ed


(you may watch a 5 minute preview clip of the film at this site)


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