Under The Eightball:
An Interview With Film Producer Timothy Grey
by Marjorie Tietjen
Lyme disease is fast becoming the scourge of the 21st century. Thousands upon thousands are being misdiagnosed with disease labels such as Chronic Fatigue Syndrome, ALS (Lou Gehrig's Disease), Multiple Sclerosis, Parkinson's, Lupus, Fibromyalgia, BiPolar, Depression, Arthritis, ADD, Alzheimer's, and the list continues on. Most of these disease classifications have no known causes, cures or definitive tests….only symptomatic treatments. The current testing for Lyme disease, and the many other insect borne co-infections that often accompany Lyme, is very unreliable. Instead of allowing these infections to be clinically diagnosed and treated appropriately (by treating the cause), this growing plague is being cleverly swept under the rug.
Untold numbers of people are suffering and dying when all that may be needed are antimicrobial drugs, with the support of natural antibiotics and a healthier lifestyle. In November of 2008 a young writer and editor died of what was diagnosed as ALS. Her name was Lori Hall Steele. Lori became ill during September of 2007. Rather quickly she began to develop odd neurological symptoms. Within a year she began to lose muscle function and eventually had to be hooked up to a breathing machine. Nearer the end of her illness Lori was diagnosed with Lyme disease. Intravenous antibiotics were administered and she did begin to improve. However, she was then taken off of the antibiotics and reverted to her declining status. Could Lori's death have been prevented?
I would like to share with you a very touching essay written by Lori and then we will talk with her brother, who is producing a film, to try and answer some of the questions people have long been wanting answers for…such as ….why is the seriousness of Lyme disease being ignored and misrepresented? Why do patients have such a difficult time getting appropriate long term treatment, even when it is obvious that the treatment is helping, and why are doctors who treat chronic Lyme being targeted? Where did Lyme disease and the ticks that carry this disease come from?
Snow Patrol
by Lori Hall Steele
Driving back from a specialist's office three hours away, my mom and I crested the big hill, the one where the bay spreads out below and you know you're home. This song (Hit Play) came on the radio as we silently looked out the windows at melting snow and cold air and the glinty last remnants of sunset on the bay. It was that time of night where everything exhales blackness, and the blackness slowly absorbs the last light.
"The sky acutest at its vanishing", as Wallace Stevens wrote.
The doctor ordered more IVs, and said there is a school of thought among some physicians that Lyme causes what the French call Maladie de Charcot. But no one knows. Our motor neuron maladies are more mysterious to modern science than AIDS and cancer and the moon, so mysterious that even accurate diagnoses elude us. So we're left to lay still, minds intact, as our voluntary muscles stop working.
My mother arrived three weeks ago and now helps me move from thing-- bed, chair, bath -- to thing. My boy has been a trooper but the night before our trip to the new doctor, he broke. I tried and tried to stand and pivot into bed to lay next to him and read One Fish, Two Fish, Red Fish, Blue Fish, but again and again my legs wouldn't lock. I told him I was so sorry, but I couldn't do it.
He began sobbing. "Try again! Try again ONE MORE TIME!" he cried over and over. I just couldn't. As much as I wanted to. I finally grabbed him from bedside and held him and sang him into quiet. He finally talked. "Maybe the special doctor will make you better."
And maybe he will. The special doctor ordered an array of new drugs, said such regimes have been successful in halting symptoms in his patients who've been diagnosed with ALS, and one's been alive and kicking for 12 years, when most with that diagnosis are hit in the lungs and die in two to five years, starved for air. So there is hope.
My mother and I believe this. I looked over at her as Snow Patrol played on the radio, and we both were crying. We both looked back at the water and snow. Then I felt her warm hand slide into mine, and we drove the rest of the way home like that, saying nothing, as night fell on the bay.
Andalusian Dogs is the name of the film company which is producing the soon to be released movie, Under the Eightball. I had the privilege to be able to view the first half of the film before it was completed. The producers, Timothy Grey and Breanne Russell, held a screening of their "movie in progress" at the Peer Observation's Physician's Roundtable in February of 2009 in North Carolina. The first section of the movie depicted Lori's story and what the family went through while desperately trying to find answers as to why she became sick and, at the same time, searching for solutions. Parts of this movie made you laugh, parts made you cry and at times you would just shake your head at the senselessness of it all. Some scenes in the movie were filled with burning raw emotion and one couldn't help coming away with feelings of compassion and anger…..all mixed together.
Interviewer: When did you become interested in making films?
Timothy : My background is in Music and Graphic design. I was in a band that had just released a CD and we were promoting it. A friend had a small DV camera and I got everyone together and made them do an intro, a short ten minute movie that we would run before we would perform. It was fun, and I really found it to be an enthralling medium as it encompasses elements of art forms I had already been working with. We then made a clay-mation Christmas special, complete with clay figurines of all of us. I still have mine somewhere. The band was kicked out of Tragic City and left for the island of misfit bands in their snow machine. That was fun. I then decided to make a feature length film and release it. We filmed and then went into post production for about a year and then it screened regionally (four theaters throughout the state) and I can say that I had a film that beat Spiderman 2 at the box office one night.
Interviewer : What led you to pick the name Andalusian Dogs for your production company?
Timothy: The original translation is Un chien andalou (1929). It was a film that Salvador Dali made with Spanish filmmaker Louis Bunuel. It is regarded as the first and, arguably the most important surrealist film. It was later a song by the band The Pixies. We would listen to this when we were making our first film, it started the production day, every day. Our production company had a different name then. When we went into production for Under the Eightball, we felt it was time to change the name. So, I suggested Andalusian Dogs, and everyone was like "there is no way that's not taken already". So we looked….and here we are with this disturbing name.
Interviewer: What are your goals or objectives for this film?
Timothy : To wake people up. This is a much larger global concern than many people, even people involved in the controversy, realize. There is a school of research that suggests that Fibromyalgia and CFS are different varieties of Lyme, and that they always have been. If this is the case we need more accurate math, and quickly. The CDC states that there is an under-reporting of Lyme by a factor of 10X. This would bring the numbers to an estimate of 200,000 cases a year. The statistics for Fibromyalgia and CFS , combined, are in the millions.
Interviewer: Is Lyme disease prevalent in the area where your sister Lori lived?
Timothy: According to the medical community in Michigan, it's rarer than conjoined quadruplets. We were, with all honesty, told that there "has never been a case of Lyme in Michigan." Apparently these people have no access to the CDC's website, but will continue to wax profound, profoundly mis-informed. According to the CDC there has been Lyme in Michigan since the early eighties. We have a handful of LLMDs here that are helpful, but given the state of politics in the medical community concerning Lyme, this makes it very difficult to diagnose and treat effectively.
Interviewer: I understand that your production company is conducting an illness survey in the Traverse City Michigan area. Can you tell us a bit about that and have you had any responses?
Timothy: We had placed ads in the local newspapers and online. The response was somewhat modest, less than 100. The ad asked for age, sex, illness, length of diagnosis, and address. We concluded that people were uncomfortable discussing illness in this manner, even though the purpose and use of the information was clearly stated.
Interviewer: Have you encountered any obstacles or roadblocks while trying to get interviews?
Timothy: Yeah, there are a group of doctors with The Infectious Disease Society of America, whom we've been trying to contact for interviews and they have not returned our calls or emails. I think we should try carrier pigeons-- do you think that might be too much?
Interviewer: Do you feel that Lyme played a role in Lori's ALS?
Timothy: Yes, I believe that Lyme played a significant role in my sister's death. I have said that she died from complications of Lyme-- not simply the physical effects but also from the social and medical climate that permeates this disease. We first had to convince the doctors that it was Lyme we were treating, that Lyme disease exists in Michigan, and then how they should treat it. The most dangerous symptom of this disease is ignorance. Doctors have been led to believe it is something completely different than what it really is, which is a complex multi-systemic constellation of presentations which assault every department of a human being, without reason, without purpose-- not simply a bull's eye rash with achy knees. That said, the main failure in this case, and in the entire Lyme disease world, is one of ambivalence.
Inteviewer: Do you have any thoughts as to how this epidemic emerged?
Timothy: Yes, I do. Unfortunately I am unable to go into great detail about this, but I can say that if this disease has been around for centuries why has it only become a problem, possibly pandemic, in our lifetime? This will be discussed in full in the film.
Interviewer: When will your film be coming out and where will people be able to go see it?
Timothy: We are releasing the film June 22nd. The premiere will be held at the State Theater in Traverse City. The State Theater is run by Academy award winning director Michael Moore. We will also be launching an online premiere on the same date. People will be able to purchase tickets for the one-time viewing online. The film will then go into select viewing/speaking engagements with myself and Breanne Russell, my co-director and producer, at colleges and theaters throughout the US, Canada and Europe.
Interviewer: Thank you, Timothy, for taking the time to answer these questions. I am looking forward to the completed movie and I know it will help to bring more awareness to a world where Lyme disease is causing much needless confusion, suffering and death. The time has come for investigation-- not just of the Infectious Disease Society of America (IDSA) but of the powers which are allowing the IDSA and other government agencies to get away with what they are doing, which is essentially disabling the population and making them dependent on the medical industrial complex.
