Kim Snyder is a CFS patient and a filmmaker. Her documentary, “I Remember Me” recently screened at the Santa Barbara International Film Festival, and has won several film festival awards. I interviewed Kim about the incredible impact her film has had on audiences everywhere and also discovered how the film got made, despite the challenges of living with CFS.
To read an earlier review of the film click on this link: Go to Review
What have been audience’s reactions at screenings?
They’ve been similar no matter where, in that there is always a contingent of people who don’t have the illness or know nothing about it and they seem to feel that it speaks to any kind of loss, which makes me happy because as a filmmaker I want to be telling a story that’s universal. It’s important to make a movie that makes CFIDS people proud, and it’s more important to make a movie accessible to people who know nothing. People are very moved – they say things like I had no idea, didn’t know anything about it, or they say, boy did you turn my head around, I had bought into the myth. And then I’ve had sufferers and family members – friends – say I never really understood before…who are just so touched.
There’s lots of emotion from the sufferers. I was fearful early on that I wouldn’t be able to make everybody happy and I’m sure I haven’t but I told a story that I thought had a lot of layers and angles. For the most part, people are really grateful that this is getting out there. It’s been very heartwarming, and people ask me how they can help to get this out there.
Is the finished movie what you expected it to be?
No it’s not what I expected. I never thought I would put my story in at all. I didn’t think I would narrate it. As I started to go out and film it was like making a patchwork quilt. Making each patch separately, even though I had an overall vision. I knew that the biggest challenge was to glue all these pieces together into something that has an organic flow and an arc-like story. I realized with the help of my editor, there had to be some glue that wove it together and it had to be me. So, in the end I saw myself as a witness. It’s a first person narrative to some extent, but I’m really just a witness. Look at what I walked into.
Did you chronicle your illness right from the beginning?
I think, like a lot of people with CFS, two years into it I honestly thought I wouldn’t have it five years later. I started out diagnosed in October ‘95 and very early on, 11 months leading up to diagnosis, I journaled but I didn’t know what I had. As soon as I had a diagnosis and started to learn very quickly that this was a crazy situation, that people didn’t know what it was, my immediate impulse was, oh my god, I have to document this. I was at a very critical time in my career and I was outraged that I had fallen off my horse. It’s an identity thing as a filmmaker.
But I wasn’t well enough to think I could make films. I thought maybe I can write. I was bedridden from Oct 95 basically until that June 96. During that time, I began to think, I’m going to somehow make a film because this is an amazing phenomenon. I just couldn’t get over how sick I was. And how horribly this was being treated. At that point I was cognitively really impaired and I remember during that nine month period I would set an eggtimer for 20 minutes and try to write down ideas. And that would be a lot in a day. It grew and I just had this image that I would try to increase it by a minute! And eventually I had a short proposal and I was just going to be in Lyndonville. I would see what it would be like to interview someone for an hour and I got a small grant for that.
Once it started I couldn’t not continue – I was driven to finish it. Even though I was sick, I would basically just shore up and try to go somewhere for a week every other month. The production part over 3 years was in increments along the way. The editing was a lot more intense. By then I had gotten better than the first three years, and my hours of concentration were better.
How difficult was it to be sick and simultaneously telling other patients’ stories?
When I look back there were times where I totally fell apart, especially in Lake Tahoe. There were more than a few times where I myself and especially my co-producers questioned whether I should be doing this at all. Maybe it was too big. And then at that point…you don’t know if you’re going to recover. I kept wondering, am I risking my health?
In the end I think I need to have some purpose and that seemed to be my personal motivation. I need to have this purpose. And then the more it got underway, it became one of those projects where things would fall into place. Not that it was easy but something would happen. It felt like it was meant to be.
And what did you think of the film when it was completed?
Four and a half years later it’s done and it’s just…I always thought if this film gets out on video for CFS patients alone and its meaningful to them, that’ll be great. But in the back of my mind and in my heart I knew I wanted to make a film that would be seen by the general public in some way and it is. I really am getting it out there. It is getting news coverage and recently I went to a festival in Syracuse, Fl. The women from Punta Gorda – they were vindicated, they felt like they could rest now after 40 years of no acknowledgement, because the film got two front page articles in that county’s paper saying that all these people really got this disease 40 years ago. There was an effect of restoring a sense of dignity. I feel for myself, personally being able to make this movie is restoring a sense of dignity in the face of suffering.
What has been some of the unexpected impact of your film?
The CFS community is so disheartened – people with other really hard diseases get empathy and at least in the empathy they get the validation, they get to feel that there’s a nobility, a sense of pride in the fact that they are doing the best they can in a tough situation. That has been missing in the CFS community because of how awfully it has been treated. I feel that this is a way for people to have someone they know see it – they don’t have to say anything, they’ll get it from the film. The film can have that power and it can render something in a way that you would never be able to convey. And I think it does that and it’s a way for people to say look at all these people and look at these stories.
Do you think the public’s perception of CFS is changing?
I don’t know across the board. I’ve had a lot of people who’ve seen my film. I think it’s a hard film to watch and be a total skeptic. It’s hard to watch that movie and if I could be objective say its all a crock of shit! There’s so much honesty in it. And it’s such a range of characters. So I really think it can make a difference.
I’m hoping to use this educationally, in schools and medical institutions and libraries and also for advocacy efforts. It’s great for people involved in legislation. For people to absorb the kind of suffering we are talking about…it’s hard to take in.
I’m sure the serious skeptics will still be serious skeptics. I think it was Dr. Bell who said, “There are some people who are just going to die being right, they’re not going to admit their wrong.” But maybe some of the skeptics will come around.
But on the street maybe the attitude of the public can only be better than ten years ago – absolutely. I run into more people who have heard of CFS or read a sympathetic article somewhere.
More and more people know people and witness people who have it. It’s a first hand experience with it, in a way they can’t deny.
To what do you attribute your better health?
I’m not recovered. I was were severely sick the first two or three years and was fortunate to improve. I am a lot better than I was. I still have a serious disability but when I look back I can’t believe how much worse it was. It’s hard to believe that now I function and then I didn’t.
The amount that I have recovered I attribute to lifestyle change. I moved from the city to the seashore. I have the ability to regulate my schedule and life to accommodate the disease. I look at it like if a friend of mine had just gotten it I would say for the time being imagine that you’re like a person with a heart condition and can’t lift, no stress, no exertion to the point of exhaustion, be really careful or you could have a relapse. I think I live similarly to a person who has a heart condition.
What is the one thing you want to say to CFS patients?
The thing I have the most to say about in this process of having made the film – to me the real core of the film is about having a sense of purpose in the midst of your suffering. Whatever that is – it can be a pet, or a plant, but I think you do have to have a sense of purpose. I think that that is the most important thing even if every dream you ever had seems to be squashed in the midst of this.
It doesn’t matter, if in creating that (sense of purpose) you only can devote five minutes a day to it, but create a sense of mission. The purpose is why it all matters despite having to live this thing day in and day out
How can the general public get access to the film?
I have a Web site called www.Irememberme.com, which will give out information.
The film is playing in the Cleveland International Film Festival on March 22 and 23. Then it’s playing at the Taos Talking Picture Festival, which is April 6 and 7.
What are your plans for the film now?
I have a distributor interested. I’m trying to let that go forward. I have some music that cost a lot of money, and I have to clear the rights and do some more fundraising to be able to pay off some aspects of post production. If that happens they’re committed to opening it in a number of art-house theatres.
It will be made available on videocassette. How that will happen isn’t clear yet because it depends on the distributor but it’s not likely until the end of the year.
If anyone wishes to make a tax-deductible donation towards the costs of post-production then they can contact the: I Remember Me project through the CFIDS ASSOC of America. If anyone wishes to contact me personally they can write a letter also via the CFIDS Association and also check on my Web site. The address is: PO Box 220398, Charlotte NC 28222-0398.
Toll-free Info Line: 1-800/442-3437 email: firstname.lastname@example.org