Breaking the Mold

by | Mar 25, 2009 | Mold Illness News, NEWS, Recovery Stories, THRIVE | 4 comments

Black Mold Exposure’s Michael Roland Williams and Karen Noseff talk about health, sex, and how to reach seemingly unattainable goals when you feel like you’re dying


Black Mold Exposure Movie


The most inspirational people are always the ones that take the crappy hand life dealt them and transform their bad luck into something larger than their own experience. Such is the case with Michael Roland Williams, producer and director of the movie Black Mold Exposure, premiering at the Landmark Magnolia Theatre in Dallas on April 21, and girlfriend Karen Noseff, one of the documentary’s main subjects.

Both became severely—and chronically—ill after being exposed to toxic black mold in their apartment several years ago. Early on, Michael decided to film the experience as it unfolded, and the result is the first-ever film to document the lives of those damaged by toxic mold. The movie follows Karen and others whose lives were derailed by mold illness, visits with some of the top physicians working in the field of mycotoxin illness today, and, as the film’s website describes, reveals how mold victims oftentimes must recover their own health single-handedly “in an atmosphere of political and social intolerance and disbelief.”

Julie Genser, founder of Planet Thrive, recently had the honor of a virtual sit-down with both Michael and Karen to discuss their mold nightmare and the long road out of it.


JG: How long were you being exposed to mold before you both got sick?


Karen NoseffKN: I was in the apartment for three weeks before Michael so I was already manifesting symptoms when he moved in.

Michael Rolland WilliamsMRW: I was in the apartment about 3 months being exposed, but I was in the apartment 24 hours a day because I was working out of it. It started out with itching on my skin that became worse over time. Everything was downhill from there.


JG: Karen, you detail some of your losses on your website: “…over a 3 month period I went from being completely healthy to extremely ill, bedridden, emaciated, and in physical pain every waking moment. My entire face and 50% of my body was covered in an excruciating rash. I was diagnosed with MCS (Multiple Chemical Sensitivity) and Environmental Illness and had to medically withdraw from law school.” Did you both experience the same sort of symptoms and the same severity of symptoms?


Karen NoseffKN: Yes, more or less.



JG: Did you move out immediately once you knew the problem was mold?


Michael Rolland WilliamsMRW: We left immediately upon realizing it was mold. Immediately. I walked out with the clothes on my back and got in my car and never went back. The place was that infested.


Black Mold Exposure Movie

Saratoga Springs Apartments in Dallas, TX evacuated 264 units due to mold and remained empty for 5 years.


JG: Incredible! In the film, we learn that the entire 264-unit apartment community you were living in at the time was eventually evacuated and gutted due to the toxic mold infestation. Did you pursue legal action against the landlords?


Michael Rolland WilliamsMRW: Yes, we did pursue legal action, but we are under a confidentiality agreement. Legal action for personal injury is a long drawn out losing battle right now with mold in most states. Especially in a conservative state like Texas. It sucks for the people that are involved, but if you think about it from an outside perspective. We really don’t know exactly what molds, over what period of time, will do to any given person. It could cause any number of health problems and you just have a hard time proving that. It doesn’t mean it didn’t happen.


JG: Prior to this experience, you were working as an actor. How far into the illness did you decide to make a movie, and how long did it take to complete?


Michael Rolland WilliamsMRW: About 3 years into it I decided to produce the film. This is my first film, however, because I was a paid actor in all mediums prior to making it I wasn’t unfamiliar with filmmaking. It took 3 years to complete the film.


JG: Was it difficult to find and get the other mold victims that appear in the film involved?


Michael Rolland WilliamsMRW: It was difficult at times to get people involved, but once the production got rolling more people jumped on. It was a question of who I wanted in the film, and not if I could find anyone. There were so many stories and most of them are essentially the same story, so I wanted to find people that fit with what I was trying to do, which was make an entertaining film.


JG: Was the movie production well planned out or did it unfold as you lived it?


Michael Rolland WilliamsMRW: It was well planned out, but being a documentary, naturally, it unfolded as it was shot. The story was crafted and the film came together in the edit.


JG: How did you finance the movie?


Michael Rolland WilliamsMRW: I played online poker for the production of the film and I borrowed the rest for post-production.


JG: Wow, that’s very impressive. You must be a great poker player! How long did it take for each of you to start feeling well and seeing improvement?


Karen NoseffKN: Two years. The first 2 years were hell. One step forward, two steps back. Then finally came a breakthrough.

Michael Rolland WilliamsMRW: It was so gradual that I have no idea. I’ve worked about 100 hours a week for the better part of two or three years. My life has become a blur. I don’t remember when I started to feel better. I really don’t. But it has been a very gradual process. Better late than never though.


JG: Ritchie J. Shoemaker, MD (featured in Black Mold Exposure) has mapped out a “biotoxin illness pathway” to diagnose and treat mold victims. His treatment approach involves a genetic model of susceptibility to mold illness. William J. Rea, MD of the Environmental Health Center in Dallas takes an immunological approach, offering mold antigen shots, among other therapies. Karen, I know you attribute the bulk of your recovery to these antigen shots. What other treatments and lifestyle changes did you make to assist in your recovery?


Karen NoseffKN: Safe housing – free from chemicals/paints/pesticides – far-infrared sauna, eastern medicine, supplements, antihistamines, diet modifications, exercise, prayer. Makeup, hair products/etc that are fragrance free/organic/low-tox.

Michael Rolland WilliamsMRW: I could write a book on this as well. Exercise, drink water, eat healthy, have sex, pray. Not necessarily in that particular order. (laughs) Seriously though, you should be doing all those things that you should’ve been doing before but you weren’t, and then assess your problems and go find the answers. There isn’t one way out of this, but you have to make sure the basics are covered with nutrient levels, exercise, hydration, hormone levels, etc. Exercise does so much for the body on so many levels that it’s insane not to exercise and wonder why you aren’t feeling well. If you can only raise your arms, then raise your arms once today. Raise your arms twice tomorrow. At the end of the year you’ll be raising your arms 365 times a day.


JG: I agree! When I was living in a mold-infested apartment with severe chemical sensitivity myself, I practiced tribal bellydance at least an hour every day. It’s wonderful if you can find a form of exercise you feel passionate about. As a result of the toxic mold exposure, you both developed severe chemical sensitivity and essentially became “allergic to the world.” What’s the most surreal mold-related incident that happened?


Michael Rolland WilliamsMRW: One incessant problem we had is that the a/c and heat from cars and buildings burned our face everywhere we went, and in Texas the a/c or heat is running year round everywhere.

Karen NoseffKN: Loosing 80% of what I had accumulated up to age 25 and loosing my health at the same time. People not believing that I was sick.


JG: So, are you both completely recovered now and able to go into most public environments?


Karen NoseffKN: I am. 90%. I can tolerate perfume on people as long as I can go home and recover while I sleep. I still react but at a tolerable (“normal allergy reaction” level) and not a debilitating “please shoot me now” level.

Michael Rolland WilliamsMRW: I’ve still had problems, but I’m much better and I’m getting better exponentially every day. I don’t have severe situations anymore, but I do have bad days occasionally.


JG: What advice do you have for others suffering from toxic mold exposure and/or severe chemical sensitivity?


Michael Rolland WilliamsMRW: Take sole responsibility for your health. I see a lot of people blaming others. Stop blaming others and educate yourself. Never stop learning and never give up. I’m not going to stop until I’m completely whole, and I believe that I’m going to achieve that.

Karen NoseffKN: Don’t feel sorry for yourself. It’s already happened. Manage it and move on. You will get well if you expect to get well and accept nothing less. Don’t go to traditional doctors—they cannot and will not help you. Read books and educate yourself. You can self treat a lot of the problems.


JG: Great advice from both of you. Personally, I’ve also found that focusing on the practical rather than the emotional is very helpful. How did you find the inner strength to get through your nightmare—where did you get emotional support?


Karen NoseffKN: Prayer. Emotional support from each other—that’s it. No one else really understood what was going on or really had any time or tolerance for it.


JG: Did you connect with other mold victims and sufferers of severe chemical sensitivity during your experience, and have you been able to maintain those connections after your recovery? It seems like it would be difficult.


Karen NoseffKN: I did not connect with any other mold victims. I only had Michael.



JG: Wow, that is tough. You both are definitely survivors. How did the insight you gained into our toxic culture from having severe chemical sensitivity impact your long-term goals and plans, if at all?


Karen NoseffKN: My long term goals are not affected. But I have forever changed my lifestyle. I will never use unsafe products in my home or on my body.


JG: So is it safe to assume that you still live a healthy lifestyle and take care to minimize your toxic exposures?


Karen NoseffKN: Absolutely. Everyday.



JG: Karen, since recovering your health, you’ve achieved financial and critical success with your jeans company Fortune Denim. You’ve also produced your own record. These were both lifelong dreams of yours. You mention on your website that in order to achieve your goals, you developed a life plan and you wrote out that plan in detail and followed a list every day, taking “massive action to manifest it.” My boyfriend, who also has severe chemical injury, uses a list system like this to manage his life. Can you talk a little about that, and how it might be especially helpful for those with neuro impairment and memory problems?


Karen NoseffKN: I suggest Tony Robbins’ programs, which help you to compartmentalize different major areas of your life into manageable parts, write down your goals, and create a massive action plan. That’s what I did. His system works well for me and should work well for anyone willing to put the time into it. I also used prayer and meditation daily.


JG: You also say on your website that you lost most of your friends when you got sick. What has the recovery been like, on a social level. Have those people reappeared in your life, and have you welcomed them back?


Karen NoseffKN: I have a completely new social circle. There are some people from the past that I still stay connected with but those are few. I have eliminated toxic-relationships. I don’t seek the old people out. If they find me, fine. I don’t make the effort.


Black Mold Exposure Movie

Ted Cartwright (Environmental Evaluator)


JG: Do you try to help educate others on the dangers of mold and chemicals, or have you just put the nightmare behind you?


Karen NoseffKN: The truth is, [most] people don’t want to hear this…90% of them. They want to live in their box and use the unsafe products that they think are safe just because the FDA approved them or they are on store shelves. It’s not my place to educate them. And I have too many things that I want to accomplish to have time to attempt to educate someone that is most likely going to laugh at me. If someone asks me out of curiosity or asks for my help, then of course. Otherwise, no.


JG: Karen, you personally donate to World Vision and The International Fellowship of Christians and Jews, non-profit organizations that you had been involved with for years prior to the mold incident. Your company Fortune Denim also donates to two interesting and noteworthy charities – The Nepal Project and DIFFA (Design Industries Foundation Fighting AIDS). You’re clearly committed to “giving back.” Is there a reason you haven’t chosen charities that benefit mold victims (like the Fungal Disease Resource Center) and/or those that suffer from severe environmental illness, knowing the lack of awareness and support received from sufferers in the medical, healthcare, and social arenas?


Karen NoseffKN: The Nepal Project was started by my business partner Abi Ferrin and it made sense to continue forward with it when we formed an alliance. DIFFA is a given since it is specific to my industry and local to Dallas. I do not support DIFFA monetarily (I do the others) however I contribute my time and services. I will consider a charity that benefits mold victims, but to be honest, the reason I am involved in my existing charities is because food is a basic necessity to survival and the organizations I support provide food to impoverished children and the elderly in third world countries. Not that mold victims do not suffer severely, but they are not going to die tomorrow because they didn’t get their bowl of rice soup from their sponsor…you get what I’m trying to say…I cannot tolerate the fact that there are starving children and old people. They need help. Now. Above and beyond anyone else. But yes, a mold charity is next.


JG: That’s good to hear, because only those who have been through it themselves are likely to fund programs that benefit mold victims or sufferers of severe chemical intolerance. We need to help others that come after us, because it’s most likely that no one else will. Michael, what were the obstacles to getting the movie made?


Michael Rolland WilliamsMRW: There were so many obstacles that there is no way I can remember all of them. Everyday was a day of problem solving. I’m trying to think of one right now and I can’t. Making a movie is such a colossal undertaking.


JG: What fueled your motivation to take this project to the end of completion in the face of so many obstacles?


Michael Rolland WilliamsMRW: Well, once I started, I wasn’t going to stop until it was complete. I’m a very stubborn and determined person.


JG: What are you hoping this movie will accomplish?


Michael Rolland WilliamsMRW: My goal was to make an entertaining and enlightening film.



JG: Do you recall what the lowest point in your journey with mold was, and the highest?


Michael Rolland WilliamsMRW: That’s a difficult question to answer. There were so many super low points that it’s just a blur of living hell. High points. I can’t say there are any.


Karen NoseffKN: For me the lowest point was having friends and family turn their backs on me/mock me/not want to understand. The highest: Actually starting to recover; knowing that the antigen injections were working.


JG: Many people who encounter a life challenge like this come out of it with pearls of wisdom and a whole new outlook on life. What are yours?


Karen NoseffKN: Stop worrying about what other people think about you—what matters is what you think about yourself. Stop living your life to please others—please yourself. Stop living in the box. Get out of the box. Be sympathetic towards others’ plights. Give people the benefit of the doubt even if you don’t understand them. You are not them so don’t judge them. Live life fearlessly and as if each day was your last. Learn to discern real friends.

Michael Rolland WilliamsMRW: Prior to the mold thing I was already a very philosophical and spiritual person. Did I come out with a whole new outlook? No. I was already way out of the box before we became ill. I see a lot of mold victims who are so angry. You gotta let that go, it has no use. I was never angry from this. Life isn’t fair, but if you can wake up and go to sleep each day knowing that you’ve done the best that you can do, and I mean truly done the best you can do, not make up rationalizations or self-lies as to why things aren’t going your way. If you can do that everyday, then that’s all you can do.


JG: That’s amazing that you felt no anger over your situation. I did feel a lot of anger over my own experience with chronic illness but I was able to channel those negative emotions into something positive—creating Planet Thrive. Your ability to avoid getting mired in the anger is undoubtedly a testament to your recovery and ability to accomplish so much in the face of great challenge. What are your future plans, do you expect to continue working to educate others on the dangers of mold exposure? Will you continue making movies?


Karen NoseffKN: To rule the world. Just kidding. But not really… :-) I’m writing a book and focusing on my company and music.

Michael Rolland WilliamsMRW: I plan on continuing with producing, writing, directing, and acting in films. That’s what I love! My mold story is the film. Unfortunately, I believe that it’s going to take many years for people to understand the severity of the hazard of mold in a contained environment.


JG: Thank you both for your time. Planet Thrive congratulates you on your successes (both health-wise and career-wise), and wishes you both good luck with your future ventures.


Black Mold Exposure MovieScreenings for Black Mold Exposure will be held April 21/22 in Dallas, TX, April 28 in Austin, TX, May 12 in San Diego, CA, May 14 in Boston, MA, May 19 in Seattle, WA, May 26 in Houston, TX, and June 16 in Chicago, IL. Additional screenings may be added—see blackmoldexposuremovie.com for updates to the schedule. The DVD* will be available 3 or 4 months after the theatrical release.


*50% of DVD sales will be donated to re|shelter when purchased through this link





photo credits: © Looking Glass Entertainment Company


Julie GenserJulie Genser is a survivor of mercury and arsenic poisoning, chemical injury, mold-related illness, and lyme disease. She is the founder and director of PlanetThrive.com, a grassroots community for personal wellness that aims to empower others healing from environmental illnesses with the information, resources, and support necessary to create change in their world.


4 Comments

  1. Linda

    I am sad I have not seen this documentary yet. It sounds wonderful. :) Linda

  2. dylan

    Having been a fellow filmmaker and toxic black mold survivor, this interview really struck a chord with me. I can deeply relate to what this couple went through. Thank you so much for conducting the interview and thank you to Michael and Karen for sharing their experience and for making the film. Planet Thrive is the only MCS website I’ve found that focuses on the solutions, and that is such a gift. Thanks ,

    Dylan

  3. Kim G

    What year is this from? The website link doesn’t seem to be correct…

    Thanks for the great interview. I’m sending this to family and friends who want to understand more about what we’re going through.

  4. Kim G

    It looks like the correct link to the website should be:
    http://blackmoldexposure.com/

    (leave off the “movie” part after “exposure”)

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