Did the Mold at Grey Gardens Affect Big Edie and Little Edie Beale?


From the movie “That Summer:” Little Edie Bouvier Beale (left) and Lee Bouvier Radziwill at Grey Gardens in 1972.

September 27, 2017

By Lisa Petrison, Ph.D.

By early 2007, I had been sick with the disease now officially called “ME/CFS” for more than a decade. I was in bed and comatose almost all of the time and seemed to be getting sicker and sicker by the minute.

It was at this time that I first listened to the soundtrack for the Broadway musical “Grey Gardens.” The show is based on the famous documentary movie of the same name, and depicts two impoverished but formerly upper-crust relatives of Jacqueline Kennedy Onassis who lived reclusively from the 1950’s to the 1970’s in a falling-apart mansion in the exclusive vacation community of East Hampton, NY.

I was particularly struck by a song from the musical called “Another Winter in a Summer Town,” because it seemed to summarize much of how I felt about my own former life having slipped away from me due to my ongoing illness.



The story of the Beales (“Big Edie” and her daughter “Little Edie”) became interesting enough to me that I soon joined the Grey Gardens Yahoo group, which included quite a few people who had actually known the Beales. I wasn’t sure why I was so intrigued (actually vaguely obsessed) with their story, except that I felt that there was a clue there with regard to my own life that needed to be figured out.

In late 2007, subsequent to discussing the topic with Erik Johnson, I realized that my home had a hidden toxic mold problem (with water from leaks in my lower-level windows dripping behind the fake paneling) and that I had become extremely sensitive to even small amounts of mold toxins. I started doing much better fairly soon after getting away from the problematic environment (including putting aside all of my possessions), and over time regained most of my health.

Over the subsequent years, I have thought periodically about the Beales’ decaying home and wondered whether the mold that I assumed must have been present in it had an effect on them. One time I even brought the topic up in the Grey Gardens Yahoo group, but without drawing much interest or discussion. (This was long before most people had any idea that toxic mold could cause neurological illness and quite a few years before I established the Paradigm Change website, and so the lack of positive response was not much of a surprise to me.)

In early September 2017, I happened to be at the Telluride Film Festival and noted on the schedule a new movie – called “That Summer” – that included an extensive amount of footage of the Beales and Grey Gardens from 1972, when the house was at its absolute worst.

I saw the film twice, taking extensive notes about its content in the darkened theater, and have since been thinking again about whether mold toxicity in the house might have had an effect on the Beales.

This article summarizes some background information on the Beales and Grey Gardens; reviews the film that I saw in Telluride; and discusses the topic of mold-related illness as I believe it may be relevant to the Beales’ story.


A trailer for the original 1975 “Grey Gardens” documentary.

Background on the Beales

Edith Ewing Bouvier Beale (“Big Edie”) was born in 1895 into a wealthy family and grew up in New Jersey and Manhattan. Her father (Major John Vernou Bouvier Jr.) was a successful attorney, and her mother (Maude Sergeant) was the English-born daughter of a wealthy paper manufacturer.

Edith was one of five children and the younger sister of John Vernou “Black Jack” Bouvier III (father of Jacqueline Bouvier Kennedy Onassis and Lee Bouvier Radziwill). She was trained as an opera singer and also enjoyed photography and various theatrical pursuits.

In January 1917, she married her father’s law partner, Phelan Beale. She was 21 and he was 35. It was a lavish wedding held at St. Patrick’s Cathedral in New York City, with 2500 people in attendance at the ceremony and 500 at the reception.

The couple had a daughter, Edith Bouvier Beale (nicknamed “Little Edie”), in November 1917. They then had two sons, Phelan Beale Jr. (born in 1920) and Bouvier Beale (born in 1922).


Big Edie Beale’s wedding portrait, taken in 1917. Photo credit: Edith Bouvier Beale of Grey Gardens: A Life in Pictures. Courtesy of the Estate of Edith Bouvier Beale.


In 1923, Edith persuaded her husband to purchase Grey Gardens, a beautiful 28-room mansion overlooking the ocean in East Hampton, NY (a wealthy vacation town on Long Island). At first, the family continued to live most of the time in their home in New York City, but eventually Big Edie and the children began spending increasing amounts of time at Grey Gardens.

Although Phelan Beale did not lose all of his money in the Depression, financial issues were difficult after that. The couple began living separately in the 1930’s, with Big Edie and the children remaining at Grey Gardens.


Big Edie and Little Edie, circa 1918. Photo courtesy of the Estate of Edith Bouvier Beale.


In 1946, Phelan Beale notified Big Edie by telegram from Mexico that he had obtained a divorce from her, and shortly after that he remarried. (Little Edie referred to this as a “fake Mexican divorce,” pointing out that that it was not recognized by the Catholic Church.)

Little Edie graduated from Miss Porter’s School in 1935. Her debut, which was covered by The New York Times, was held at the Pierre Hotel in New York City.

She then spent the next 17 years dating wealthy men (reportedly Joseph Kennedy Jr., J. Paul Getty and Howard Hughes were among them) and modeling, with the hope of achieving a career as an actress and dancer. For a number of years she lived at the Barbizon Hotel in New York City.


Little Edie Beale in her debutante dress. Photo credit: Edith Bouvier Beale of Grey Gardens: A Life in Pictures. Courtesy of the Estate of Edith Bouvier Beale.


As Little Edie became older, her father stated that he did not have the money to continue to support her and – since she did not seem inclined to get married – encouraged her to pursue a business career. Little Edie tried working in offices a few times, but things did not work out.

(In one interview, Little Edie stated that earlier in her life, both her father and Joseph Kennedy Jr. had urged her to become a lawyer but that she had decided she didn’t want to do that.)

In 1952 (the year that Little Edie turned 35), she moved back to Grey Gardens to live with her mother.

Phelan Beale died in 1956. He did not leave any substantial amount of money to his daughter or former wife, and the trust fund of $65,000 that Big Edie had inherited from her father was gradually depleted as a result of taking care of expenses for the house.

Both of Big Edie’s sons attempted repeatedly to persuade her to sell the house and to move somewhere more affordable, but she refused.

Little Edie continued to live with her mother, moving into her 40’s and then her 50’s and losing her hair along the way. Although she attended the Washington D.C. inauguration of President John F. Kennedy (her cousin Jacqueline’s husband) in 1961, over the years she and her mother became increasingly isolated.

By late 1971, Big Edie and Little Edie had been living together in the house for nearly 20 years and the overgrown property had become an eyesore in the neighborhood.

As a result, a team of public servants from the Town of East Hampton broke into the house, stating that they had found dilapidated conditions, large accumulations of garbage and cat feces, no heating, almost no running water, and many cats and raccoons in residence.

The Beales were given an ultimatum of cleaning up the house or being evicted from it.

When contacted by the Board of Health, Bouvier Beale reportedly stated, “You’ve described it very well, but it’s nothing new – Mother is the original hippie.”

Phelan Beale Jr. was said to have commented later that there had been a trust fund but that “trying to keep up that white elephant Grey Gardens is what ruined it.”

Although both brothers had fairly successful careers, they were of the position that they could not possibly afford to keep the mansion in good repair and that the solution to the problem should be for their mother to sell the property and move elsewhere.


Little Edie and Big Edie, circa 1972. 


At this point, Little Edie and Big Edie decided to share their story with the media. Photos of the inside of the house were published in the National Enquirer, and Gail Sheehy (who owned a home in East Hampton) wrote a long article about the Beales for New York Magazine.

In summer of 1972, Jacqueline Bouvier Kennedy Onassis and her sister Lee Bouvier Radziwill became involved in the situation. Although both sisters had been very fond of their aunt while growing up, they had had little contact with either of the Beales in subsequent years.

As a result of Radziwill’s and Onassis’s interventions, the house was cleaned up to the point that the demands of the Town of East Hampton were satisfied. Most of the $30,000 for the renovations (the equivalent of $172,000 in current dollars) were reported to have been paid by Jacqueline Onassis’s wealthy husband, Aristotle Onassis.

Big Edie’s sons were reported to have paid the back property taxes.


The Beales in the 1975 movie “Grey Gardens.”


In 1973-74, the established documentary filmmakers Albert and David Maysles visited Grey Gardens on a number of occasions and filmed extensive interviews with Big Edie and Little Edie. The Beales were each paid $5,000 (about $28,000 in current dollars) for their participation.

The resulting 1975 film – called “Grey Gardens” – has since been recognized as one of the best documentaries ever made. It is often cited as a predecessor to the entire genre of reality television and in particular to the popular A&E program “Hoarders.”

In the movie, Big Edie and Little Edie spend a great deal of time singing, in addition to answering questions and allowing the Maysles to film their day-to-day life.

Little Edie also dances and models a wide variety of costumes of her own invention, which are said to have since served as inspiration to many fashion designers (including Calvin Klein, Todd Oldham and Isaac Mizrahi).

Big Edie died of pneumonia in early 1977.

In early 1978, Little Edie was invited to star in a cabaret act at the nightclub Reno Sweeney’s in Greenwich Village (New York City). The show received poor reviews and closed after a week.

She also was the subject of a portrait by Andy Warhol.


A picture of Little Edie Beale taken by Andy Warhol. Photo courtesy of Estate of Edith Bouvier Beale.


In 1979, Little Edie sold Grey Gardens to Ben Bradlee (then the executive editor of the Washington Post) and his wife, journalist Sally Quinn, for $220,000 (about $730,000 in current dollars). The couple promised Little Edie that they would reconstruct the home rather than tear it down.

Quinn – who recently wrote a book suggesting that she has psychic abilities and that she has put hexes on people – said that she was “obsessed” with the property and believed that the ghost of Big Edie wanted her to bring the house back to its former state.

Quinn insisted that Little Edie leave behind all the possessions from the house so that they could be incorporated into the renovated mansion. The original furniture was refinished and books originally belonging to the Beales were put back on the shelves.

After many years of using the house only during the summers and following the death of her husband, Quinn currently has the home on the real estate market for about $18 million.

She recently rented the house for the summer to American Express, which planned to use it for parties. However, the Town of East Hampton immediately put a stop to that idea, saying that it could not be used for any commercial purposes.

Little Edie is reported to have lived a quiet and pleasant life in Florida, Canada and California during the decades after selling Grey Gardens. She remained unmarried, but socialized and corresponded with friends, fans, and her nephews and their families.

Little Edie died at age 84 in 2002. She had been living in a small apartment in Florida and had swum daily in the ocean up until the time of her death.

She had not owned a cat in five years, the obituary in The New York Times reported.

In 2005, Albert Maysles edited some of the outtakes from the original documentary into a second full-length film, called “The Beales of Grey Gardens.”

A “Grey Gardens” musical based on the documentary movie premiered on Broadway in 2006, with both of its leading ladies (Christine Ebersole and Mary Louise Wilson) winning Tony awards for their performances. The show since has been performed in many other locations.

In 2008, Eva Marie Beale (wife of Little Edie’s nephew Bouvier Beale Jr.) released a coffee-table book containing many family photographs and other personal information about Big Edie and Little Edie. The book is titled Edith Bouvier Beale of Grey Gardens: A Life in Pictures.

Filmmaker Michael Sucsy wrote and directed a fictionalized “Grey Gardens” movie starring Jessica Lange and Drew Barrymore. It premiered on HBO in 2009 and won an Emmy award for best made-for-TV movie.

In 2015, the “Grey Gardens” documentary was spoofed in the first episode of the “mockumentary” series “Documentary Now!” on the Independent Film Channel (IFC). The title of the episode was “Sandy Passage.”


Lee Radziwill (left) and Jacqueline Onassis in Montauk, NY, in 1972. Photo credit: Peter Beard.

“That Summer”

Albert and David Maysles stated prior to their deaths that their interest in the Grey Gardens story originated when, in 1972, Lee Radziwill invited them to film at the mansion to provide material for a documentary that she was attempting to produce about her recollections of visiting East Hampton when she was a young girl.

Four reels of this previously unseen footage are at the heart of the new movie “That Summer,” which was screened at the Telluride Film Festival on September 1-4, 2017.

Directorial credit for the film is given to Goran Hugo Olsson, a Swedish filmmaker who has developed a reputation for converting “found” archival footage into full-fledged documentary films and who answered questions about the project at the screenings in Telluride.

Olsson (who said that he had no particular connection to the Grey Gardens story prior to being approached for this project) starts the movie by focusing on the relationship between Lee Bouvier Radziwill (then separated but not yet divorced from her second husband) and Peter Beard (a well-known artist and photographer) in the early 1970’s.

Radziwill (now age 84) and Beard (now age 79) serve as the narrators of the film.

The interviews with Beard were conducted specifically for this documentary. They include footage showing him working on a new photo collage and leafing through photos of famous people that he took in the 1970’s.

The interview with Lee Radziwill was conducted by Sofia Coppola in 2013 (and is available online through The New York Times website).

Radziwill and Beard originally got to know one another when they were both staying on Skorpios (a private Greek island owned by Aristotle Onassis) at the invitation of Jacqueline Kennedy Onassis in 1971. The movie includes footage and stills depicting Beard, Radziwill and Aristotle Onassis – along with Jacqueline Onassis and her two children – during this time period.

Beard – recently suggested by Town and Country magazine as possibly the most interesting man in the world – has remained friends with Radziwill over the years and recently collaborated with her on a photo memoir titled Lee.

Radziwill and Beard (who seem to have dated just for a few years during the 1970’s) exchange effusive compliments about one another at the beginning of the documentary.

“He was super-looking and had the body of a Greek god,” Radziwill recalls. “He just gave me so many more interests and so much more curiosity about possibilities.”

“Lee is the most perfect person,” Beard says.


Peter Beard (left) and Goran Hugo Olsson, 2017. Photo credit: Joslyn Barnes


After leaving Skorpios, Beard and Radziwill traveled to the U.S., where they stayed for an extended period of time in a beachfront home in Montauk, NY. The home was owned but only occasionally visited by Andy Warhol, and a number of other famous people – including Truman Capote, Mick Jagger and Bianca Jagger – were frequent guests.

Montauk (which is about 15 miles from East Hampton) had many fisherman in the early 1970s but now is occupied almost solely by rich people, Beard stated in the film.

While they were living in Montauk, Radziwill began talking to Beard about the idea of creating a film focusing on the history of the Hamptons area. She suggested that her “extremely eccentric” aunt, Edith Bouvier Beale, might be a good person to be the narrator for the film, but said that it likely would take a number of visits to the house in order to get her relatives to even answer the door.

Beard suggested that Albert and David Maysles (who had directed the Rolling Stones documentary film “Gimme Shelter”) would be good people to be involved in the project since they owned the appropriate 16mm camera equipment.

The credits for “That Summer” list Peter Beard, Andy Warhol and Lithuanian-American filmmaker Jonas Mekas as directors of the archival footage. The Maysles are given only an “Additional Footage By” credit. The film shooting style seems to me very similar to that of the “Grey Gardens” films, however.

After weeks of repeated trips to the decaying mansion – shouting and banging on the door without receiving any response – Radziwill finally got her aunt and cousin to greet her and then later returned to the mansion with the camera crew.

Although some previous materials (such as the 2009 Michael Sucsy film) suggest that Jacqueline Onassis initiated contact with her aunt and cousin after they gained notoriety about the condition of their house, this new documentary suggests that Radziwill actually was the first of the two sisters to visit the residence during that time period.

The early footage in the film shows Big Edie and Little Edie sitting outside, talking with Radziwill about the “raids” of the house by East Hampton officials and about the general difficulties they had faced in keeping up the house.

The Beales state that the officials had moved most of their belongings outdoors and then hosed down the first floor of the home with water.

Although he was not there during the incident, Peter Beard seems to be particularly appalled by reports of how the town had handled the situation.

“The whole fire department broke in and crudely sprayed everything down,” he says. “There was a huge spray of water. You can’t believe what horrible people they were.”

“You don’t know what that hosing did to me,” Big Edie says. “We hadn’t had anybody in the house for five years.”


From “That Summer”: Peter Beard, 1972


Little Edie provides an explanation for why trash in the house had piled up, stating that garbage collection in East Hampton cost money and that the local collector had refused to come to their home because of the overgrown bushes. She states that she had tried to burn some of the garbage in their fireplaces but was unsuccessful since the chimneys had filled up with growth from the bushes.

“You can’t get anyone in East Hampton unless you pay them a lot of money,” she says. “The only thing to do is to be a plumber or a carpenter, because then you can make a lot of money.”

Little Edie shows the filmmakers how the old coal bins outside the house were still filled with garbage. (As depicted in the National Enquirer photos, eventually piles of cans, papers and other trash began to accumulate inside the house as well.)

“I haven’t had a bath in eight years, or maybe about a year,” Big Edie states, referring to the lack of plumbing in the home.

Little Edie says, “If I were a drinker, I’d be consuming eight bottles per day.”

Radziwill reveals that she had talked to one of Little Edie’s brothers about the situation, asking her aunt if it was true that she was unwilling to sell the property.

Eventually (apparently on another visit), the cameras are allowed into the house, with Peter Beard narrating the appalling footage.

“It was very much a shock to see the dark moldy interior,” Beard says. “But these people were so much fun to visit. Everything was so strange and so wonderful. They were in a dream world, and it was okay.”

The documentary then shows Radziwill busily heading up the efforts of various local tradesmen to clean up and repair the house for her aunt and cousin.

“Lee got Ari [Aristotle Onassis] to say that we are going to do something about this,” Peter Beard explains in a voice-over. “Jacqueline also was very helpful.”

Onassis and Radziwill had been romantically involved in the early 1960’s, before the death of John F. Kennedy, and so the idea that Radziwill might have been influential in persuading her brother-in-law to pay for the cleanup of the house after reporting on her visits there does not seem to me entirely lacking in plausibility.

(According to Little Edie, Jacqueline Onassis then paid the utility bills on Grey Gardens and sent a small monthly allowance to her aunt and then her cousin until the house was sold in 1979. She also on a few occasions had her personal assistant hand-deliver packages of bedding, clothing, food and other necessities to the house. In “The Beales of Grey Gardens,” Big Edie chides her daughter for ruining “Jacqueline’s $300 blanket” – about $1400 in today’s dollars – by unsuccessfully using it to try to put out a small house fire.)


From “That Summer”: Lee Radziwill, 1972


While it is possible that the archival materials have been edited, Lee Radziwill appears to be a model of calm, efficiency and sympathy in all the footage presented in the new film. She listens with apparent patience and affection while her aunt explains the events that have happened; enters the crumbling house without hesitation when asked by workers to do so; and responds mildly when Little Edie expresses annoyance toward her.

“Don’t think that they don’t call me every day and tell me what’s wrong,” Radziwill states matter-of-factly about her aunt and cousin to one of the tradespeople working on the house.

Another scene shows Radziwill giving a worker instructions about which items in the house – including all the upholstered furniture – should be removed. “Things like this you’ve got to leave, because it will upset them terribly,” she says, gesturing to some battered antiques.

A little later, Little Edie agrees that it would be best if some possessions were removed from the house and put into a vault.

“I’m glad you came, you cheered me up,” Big Edie says to Radziwill at the end of one of the visits.

“Now, you stay cheered up,” Radziwill responds.

The film suggests that only seven of the 28 rooms in the house were fully renovated with appropriate heating, plumbing, painting and/or new walls. The building also received a new asphalt roof, and accumulated garbage and rotting furnishings were removed from throughout the structure. The overgrown bushes were cut back to some extent as well.

The new movie shows Little Edie relaxing outdoors in a tattered upholstered armchair while the renovations are being conducted. She says that she had purchased the chair on sale at Bloomingdale’s in 1949 for $50 (marked down from $75).

“Nobody sat ever sat in it except me,” she says. “I call it the Disappointed Chair.”

Little Edie also says that she was “mad about Mother’s cats” and that they had named one of them Tedsy Kennedy because “he was the image of Teddy Kennedy – before he got fat.”

She laments the death of one of the older cats, suggesting that it was due to breathing in toxic fumes during the renovation project.

“Cats don’t fit into redecorating – the painting and everything,” she says. “We’re all on separate tracks. We’re on one track, and the cats are on another track.”

The next section of the film shows a team of various health inspectors taking stock of the cleaned-up property. All of the trash and much of the furniture seems to have been removed. In some cases wallpaper was painted over; in others, new interior walls were put in.

The inspectors agree that the property looks a lot different and spend some time conferring with Radziwill.

Big Edie, on her best behavior, chats cordially with one of the health inspectors for an extended period of time and offers lemonade. “I don’t hate you as much as I did,” she confides.

“I hope you don’t get too hot this summer!” Big Edie exclaims, waving goodbye at the end of the visit. “Thanks for being so sweet!”

Little Edie appears to spend the entire time while the inspectors are in the house singing “My Adobe Hacienda” and looking for her eyebrow pencil. After they have left, though, she says to her mother, “Don’t you think that both of the Board of Health people have lost weight?”

Part of the money contributed by Onassis apparently went to hire a lawyer, who makes a strong public statement in favor of the Beales being allowed to remain in their house. He suggests that the large number of cats in the house will ensure that it is free of mice and rats, and that raccoons are friendly animals that East Hampton residents should be happy to have around.

After overhearing Radziwill state that she thought that the lawyer had done a good job talking to the media the previous day, Little Edie interjects, “Yes, but where is he today? I think we knocked him out. He’s recovering at the New York Athletic Club.”

Apparently referring to journalists and photographers, Radziwill advises Little Edie, “Don’t talk to those men. Just say, ‘I want my privacy.'”

“I never had any privacy!” Little Edie retorts. “I never even had a room of my own.”

As she did a few years later when filming the Maysles’ movie, Little Edie talks repeatedly in this film about moving away from Grey Gardens and establishing a life elsewhere.

“I bet you one billion dollars you don’t go to New York next fall,” Big Edie offers her.

‘So long as I live, I don’t want a house,” Little Edie responds.

At another point in the movie, Big Edie says about her daughter, “I think she’s comparatively happy.”

“Are you kidding?” Little Edie responds. “I’m on my way to Australia!”


From “That Summer”: Andy Warhol, 1972


Lois Wright (who attended Big Edie’s birthday party in the original “Grey Gardens” and was prominently featured in the second Maysles film) pops up in this new documentary too – on the other end of a phone conversation with Little Edie.

Wright (who is now age 89 and still lives in East Hampton) is known as a psychic as well as an artist, and Little Edie appears to be talking about ghosts with her.

“I made visual contact, in mother’s room,” Little Edie reports. “I pierced the veil.  But I made no identification. No features and no face.”

Big Edie spends a good chunk of the film eating with a spoon from a large container of coffee ice cream.

“This is the best thing I ever put in my mouth!” she declares.

She then offers one of the members of the camera crew some of the ice cream from the container. When he declines, she insists that he is too thin already and therefore should not be afraid of gaining three ounces.

On another occasion, Big Edie (with her large diamond engagement ring prominently displayed on her right ring finger) is singing in French when the phone rings. She picks up the receiver and continues singing for an extended period of time without first finding out who is on the line.

“Does she sound drunk today?” she asks the film crew at one point, referring to her daughter. “She sounds drunk.”

As with the original “Grey Gardens” film, much of the discussion between the two women centers on Little Edie’s appearance.

“You’ve got to change costumes every hour or so, or you’ll lose interest,” Big Edie instructs her daughter.

Later, Little Edie complains that she never can find the things that she needs to get dressed in the house. “I’m always looking for my lipstick or my pants,” she says, apparently referring to her underwear.

“What are you looking for those for?” Big Edie responds. “No one wears those anymore.”

At another point in the film, Big Edie repeatedly insists that her daughter borrow her foundation powder. Little Edie firmly refuses, stating “Your powder is dirty from being in your horrible house.”

“You should get up and make yourself beautiful every morning,” Big Edie tells her daughter a little later on. “That’s what I do!”

“All this Bouvier vanity reminds me of my father,” Lee Radziwill observes. “He wouldn’t go out unless he looked perfect.”

(Radziwill herself looks casually chic – wearing plain trousers, short-sleeved sweaters or shirts, understated makeup, and long straight hair parted in the middle – in all the Grey Gardens footage.)

A little later – apparently when her cousin was out of the room – Little Edie comments about Radziwill’s father, “Women were madly in love with Jack Bouvier.”

Big Edie immediately accuses her daughter of having had incest with her uncle.

“I didn’t say I had incest,” Little Edie defends herself. “I just said I was in love with him.”

In a sequence filmed away from Grey Gardens but still in East Hampton, Radziwill attempts to interview a friend of her father’s about his memories of Jack Bouvier. When the friend states that all the stories were too risque to share, Radziwill acknowledges that she was aware that her father was a ladies’ man and encourages him to tell the “least risque” story.  He declines, however.

(John “Black Jack” Bouvier III – brother of Big Edie – was divorced from his wife in 1940, when their daughters were still young, and never remarried.)


From “That Summer”: Little Edie Beale puts on her makeup, 1972


Another East Hampton resident, wearing a cowboy hat, expresses sympathy for the Beales over their difficulties with the town board, saying that she thought it wrong to kick people when they were down.

Late in the movie, after the Town of East Hampton had agreed that the Beales could remain in the house, Big Edie states that she did not think that putting in water pipes had been necessary and expresses a particular dislike of water heaters.

“The water heater cooks all the minerals out of the water. Then you get in the bathtub and what have you got – dead water,” she says.

Little Edie responds that her mother did not need water to come through pipes as long as someone else was carrying big pails of hot water upstairs for her to use.

Big Edie also expresses disagreement with the idea that the cleanup was necessary because the house had had vermin in it.

“We never had vermin here,” she says. “The only vermin here was you, Edie.”

Little Edie, apparently unperturbed, responds, “Yes, that’s me.  LE – Louse Edith.”

Big Edie does acknowledge that the house had needed a new roof as a result of the raccoons damaging the original wooden shingles, however.

“The roof went, but we didn’t care, because we loved the raccoons,” she says.

The last section of the movie mostly includes footage of Lee Radziwill, her two children and the Beales looking out the window and watching the activities of the “friendly” raccoons.

Little Edie and Big Edie spend most of their time in this scene quarreling about the best diet for the raccoons. Little Edie opposes feeding them sunflower seeds, saying that they are “hippie food” and not good for the animals, but her mother disagrees.

“They’re very healthy,” Big Edie insists. “They’re very expensive, $2 a bag. You’re supposed to take them with cocktails. There’s nothing hippie about that.”

“Oh, Edie, pleeeese!” she exclaims after her daughter continues to argue the point.

The women agree that the raccoons did not do well with Sara Lee cake because the icing made them sick, however.


Jacqueline Onassis (left) and Lee Radziwill, 1972. Photo credit: Peter Beard.


Although a few years later Little Edie commented that she had never liked her cousin Jacqueline and thought that her cousin Lee was a “criminal,” the film footage suggests that in 1972 when the renovations were going on, they were on fairly good terms.

“Whatever Lee and Jacqueline decide about the house is fine,” Little Edie tells the camera at one point.

Lee Radziwill seems to enjoy the time that she spends with her aunt, to be respectful of her relatives’ dignity, and to be taking the documentary film project seriously.

“Without memory, there is no light,” she says at one point in the film.

Peter Beard expresses particular enthusiasm for his experiences interacting with the Beales.

“It was like being on a flying spaceship,” he said. “I never thought of the Beales as unfortunate or sad. They just had nothing but songs and dreams of a family history long gone. We were amazed to have the old world in front of us and to capture it. ”

Radziwill suggests in her interview that her plans to produce her own documentary came to an end when the Maysles told her that they were instead interested in making a film focusing solely on her aunt and cousin.

“The Beales were terribly attracted by the Maysles, because they adored to have their pictures taken and they adored to scream at one another constantly,” Radziwill explains. “They [the Maysles] said, listen, we don’t want this to be Edie narrating for you and your nostalgia. We can really make something extraordinary out of this.”


Grey Gardens after being renovated by Sally Quinn and Ben Bradlee. Photo credit: Wikimedia Commons.

New Information

Prior to seeing this film, I had read in a few places that the reason that Lee Radziwill cancelled the film project and confiscated the film footage was because she was appalled at the idea of people seeing how her aunt and cousin had been living since it would have been embarrassing for her sister and for her.

This new film suggests that this is not true at all, however. Radziwill was obviously present when almost all the footage was being shot; demonstrates substantial affection for her aunt; seems to have been fine with the idea of bringing her own children to the house to visit their relatives; and expresses interest in recording the past as it actually was rather than in some false version.

She also seems to be respectful of her aunt’s wishes with regard to staying in the house rather than moving elsewhere and to be doing everything in her power to help those wishes be carried out.

(At least during the past decade, Radziwill also has been very supportive of efforts to share her relatives’ story with the public. She attended performances of both the off-Broadway and and the Broadway versions of the musical version of “Grey Gardens” and spoke positively about the 2009 Sucsy film when it was released.)

The fact that the Beales had been unable to get their garbage picked up at all is something that I had not heard before and provides a partial explanation for why the house had so much trash piled up in it prior to the cleanup.


The birdcage room from the original 1975 documentary “Grey Gardens.”

The Mold Situation

It always has seemed to me that if Grey Gardens was in as bad of shape as it seemed, mold must have been a major problem in it.

Oddly, however, for a long time I was unable to find any discussion at all about the extent to which mold was an issue in the home. Descriptions of problematic living conditions in the house invariably focused instead on cat feces and urine, garbage and cobwebs.

Periodically the word “moldering” was used to describe the mansion (including in the set description for the Broadway musical). As it turns out though, this word seems to not necessarily relate to mold per se, but instead is defined more generally as “decaying,” “disintegrating” or “turning to dust.”

For a long time, the best evidence that I had that Grey Gardens had a mold problem was provided by a participant in the Grey Gardens Yahoo group, who said that he had visited the mansion on a number of occasions as a young boy living during the summer months in the neighborhood, during the late 1960’s. He reported that water had poured through the ceiling like a waterfall on rainy days, and that when he touched the nearby piano it gave off a very ghostly sound.

More recently, I found an article suggesting that collage artist Ray Johnson had brought up the issue of mold and a piano in reference to a visit that he said that he paid to the mansion in about 1978, when Little Edie was living there alone after her mother’s death:

She opened a door and said “this is the ballroom,” the whole ceiling had collapsed, there was plaster all over the floor; she said, “That’s mother’s  – telephone – piano in the corner,” and here was this piano covered with gray mold. 


Although I’m not familiar enough with the layout of the house to say for sure, I wonder if that could have been the same piano that Sally Quinn said “collapsed and fell through the floor” when she touched it on one of her first visits to the mansion. The photo accompanying her statement does look like the piano may have been covered with grey mold, I think.

In any case, the footage from 1972 provides pretty good visual evidence that a good deal of mold was present prior to the cleanup, and Peter Beard also referred spontaneously to the “dark moldy interior” in his interview.

Even if the roof hadn’t been leaking, the spraying of great quantities of water into the home by the Town of East Hampton would have caused mold growth to emerge, of course.

Spraying water into a home sounds like such a catastrophically bad idea to me that I was perplexed at why the town ever would have considered it.

Peter Beard, as it turns out, also found the decision to be incomprehensible. In the introduction to the 2008 book Edith Bouvier Beale of Grey Gardens: A Life in Pictures, he wrote:

One time the whole fire department broke in, and high-power hosed-down the first floor interior – totally illegally of course and for God-knows-what intent. I never knew and never asked if this sort of primitive demonstration – a barbaric intrusion – was even legal. No one wanted to talk to the scary-town weirdos (a.k.a. the East Hampton town officials) without lawyers.


Another question is what kind of mold growth may have been present in the home. Although any kind of mold can cause health effects, some kinds of mold – especially Stachybotrys – create toxins with the ability to cause specific types of neurological harm.

Stachybotrys (also known as “black mold”) grows indoors mostly on processed cellulose, including underneath wallpaper and on the paper backing of drywall.

Drywall did not come into general use until the mid-1970s and therefore probably was not used in the 1972 renovation (and certainly would not have been present in the structure of the house prior to that). However, although the non-optimal film quality makes it hard to tell for sure, I do think that I saw mold growth associated with the peeling wallpaper in the new documentary film.

Although in the renovation some of the walls were entirely replaced, in other cases the wallpaper was painted over.

As a general rule, when moldy wallpaper or walls are painted over, the mold will start to show through the paint looking like smears of dirt on the wall within a fairly short period of time, such as a year or two.

In looking at the original “Grey Gardens” documentary filmed in 1973-74, and especially at the yellow room where Little Edie talks about hanging a birdcage and the sheet music to “Around the World,” there do indeed appear to be smears of dirt that look to me like Stachybotrys on the walls.


The photo used to promote the original 1975 “Grey Gardens” documentary.

So What Was With Those Beales?

Regardless of whether people were introduced to the Beales through the documentaries, through the fictionalized TV movie, through the Broadway musical, or in person, it is my observation that they tend to be extremely polarized in terms of their reactions toward both Big Edie and Little Edie.

Some people, like Peter Beard, find both women really fascinating and admirable, whereas others think that they both seem totally nuts. Some suggest that Big Edie was horrible to her daughter in forcing her to stay with her in the decaying house, whereas others suggest that Little Edie had nowhere else to go or should have figured out a solution to the problem.

In my opinion, Big Edie’s insistence in remaining in a house where she had once been happy despite its not being a practical choice is not in itself that unusual. Many older people express that same insistence with regard to remaining in familiar places.

I also think it is not that surprising that despite its not being a rational choice to try to stay in the house, Big Edie’s daughter and her two nieces nonetheless did everything in their power to help her remain there (while her sons did everything they could to get her to move out of the house).

I am reminded here of my grandmother, who insisted on continuing to run the family flower business until she was in her 90’s (long after my grandfather died and when her osteoporosis was so bad that she could barely move).

Most of her business came at Christmas, and so even though the shop was not making money overall, she managed to get a variety of her female relatives (daughters, granddaughters, sister, nieces, great-nieces) to contribute many hundreds of combined hours of free labor each holiday season to keep things going.

This did not make any logical sense at all, of course. But the consensus among these women seemed to be that we loved my grandmother and that since this was all that she really wanted from us, we would do our best to help her out.

From what I can see, this sort of feeling also seems to have been the motivator for Little Edie, Lee Radziwill and Jacqueline Onassis (all of whom were – like my family members – raised in devout Roman Catholic homes).

Certainly it made little sense for them to pour a large amount of money into a mini-renovation of the house just so that Big Edie could stay there, when she could have had a pleasant easy life elsewhere.

But the decision almost seems a cultural one to me – that being a good daughter or a good niece from that sort of family at that period in time meant doing what you could to keep older loved ones happy.

Little Edie had a very good additional reason to stay in the house: lack of financial resources. Although she had earned some money modeling when she was in New York City, she also had received considerable support from her father and from her mother. When that money went away and when she did not get married, the question of how she would fund a life on her own was a difficult one.

This became clearer to me when (also at the Telluride Film Festival) I watched “Battle of the Sexes,” about the experiences of tennis star Billie Jean King in 1972. At the time, even the best female tennis players in the world were earning only a small fraction of the money being given to even mediocre male tennis players.

In that context, the idea that Little Edie – who did not seem to have been suited to office work – might have been lacking in good ideas to support herself in what she considered a reasonable way from the 1950’s through the 1970’s does not seem that wrong to me.

It also is the case that keeping up a huge old house requires an enormous amount of money. Apparently the Beales did maintain the property reasonably well for many years (according to Bouvier Beale Jr., it was in pretty good shape when he visited it in 1966), but when funds ran out and the roof started leaking, things changed dramatically.

Still, it is hard to understand how the Beales could have lived in such horrible conditions for such a long period of time – and more, that Little Edie as well as Big Edie would have fought to stay in the decaying house rather than agreeing to move to a comfortable place elsewhere.

As Drew Barrymore commented at the time that the TV movie was released:

The thing that Jessica [Lange] and I had a hard time wrapping our heads around was the level of squalor they had to put up with. That’s where I couldn’t connect, where I couldn’t find a justification. They didn’t take baths, they were living with cat food cans up to their necks, with litter and garbage everywhere….It’s insane.


I do agree that regardless of how much you loved your house or regardless of how much you loved your mother, and regardless of how staunch your approach to life, it is hard to imagine living in the conditions reported at Grey Gardens for even a few minutes, much less for years.

And so that seems to me a mystery that is worth exploring a bit more.


Little Edie Beale after the death of her mother, circa 1978. Photo credit: The New York Times/Fred R. Conrad.

Executive Functioning

One symptom that is thought to be very frequently associated with mold-related illness is the loss of executive functioning.

Executive functioning is a component of intelligence that is described as allowing people to effectively manage their thoughts, emotions and actions to get things done. It is said to have an impact on skills such as paying attention; organizing and planning; initiating and staying focused on tasks; regulating emotions; and keeping track of what you are doing.

In 2014, Dr. Ritchie Shoemaker and colleagues published a peer-reviewed paper discussing their findings that patients who had been diagnosed as having mold-related illness (what they call “chronic inflammatory response syndrome” or “CIRS”) had atrophy of the caudate nucleus, a part of the brain that is related to executive functioning.

Shoemaker RC, House D, Ryan JC. Structural brain analysis in patients with inflammatory illness acquired following exposure to water-damaged buildings: A volumetric MRI study using Neuroquant. Neurotoxicology and Teratology. 2014 Sept-Oct: 45, 18-26. PMID: 24946038.


In the paper, the authors wrote:

Executive cognitive and neurologic abnormalities are commonly seen in patients with a chronic inflammatory response syndrome (CIRS) acquired following exposure to the interior environment of water-damaged buildings….This study used the volumetric software program Neuroquant (NQ) to determine specific brain structure volumes in consecutive patients (N = 17) seen in a medical clinic specializing in inflammatory illness….When compared to those of a medical control group (N = 18), statistically significant differences in brain structure proportions were seen for patients in both hemispheres of two of the eleven brain regions analyzed: atrophy of the caudate nucleus and enlargement of the pallidum. In addition, the left amygdala and right forebrain were also enlarged.

The caudate nucleus (CN)…has important frontostriatal connections that integrate neural network functioning and subserve executive cognitive functioning. These nuclei are located at the base of the forebrain, play an important role in working memory, and are involved in fine motor and cognitive functions. CN lesions lead to impairments in problem solving, mental flexibility, learning, attention, short-term and long-term memory, retrieval, and verbal fluency. Caudate and thalmic nuclei play a major role in executive functioning; damage for these structures are possibly responsible for motor, cognitive, and sensory disabilities. The CN plays a role in cognition with increasing recognition that corticostriatothalmic loops are involved in attention, executive function and movement disorder. It also may be an important anatomical substrate of cognitive dysfunction in Parkinson’s and Alzheimer’s.

In our small cohort, the presence of caudate atrophy but not other gray matter is unique.


In looking up information on executive functioning, I found one interesting article that provides a long description of how a prototypical patient lacking executive functioning capabilities (dubbed “Robin”) might go about ineffectively preparing for a car trip. In part, the description reads:

Over the next three weeks, thoughts about the trip float through Robin’s head from time to time. She thinks about how the kids will need to have things to do in the car since it’s a long trip. She thinks about taking food and snacks for the ride. She thinks about getting her work at the office cleared up in advance so she can be free of commitments for the vacation. She thinks, “I really should take care of that stuff.”

A few days before it is time to leave for the two-day drive to Missouri, she starts piling stuff into the van, including clothes and other supplies. (You can only imagine what the inside of this van looks like!)

Finally, it’s time to pile the people into the van, too. On the way out of the house, one of the kids asks, “Who will be taking care of the cats while we’re gone?” Robin moans, “Oh no! I forgot about that. We can’t just leave them here to die and there’s no one to take care of them! Now we can’t go. What will we tell Aunt Sue?” Her husband takes over, and starts calling around the neighborhood until he finds a teenager who can do the pet sitting. The crisis passes. The cats will be fine.

So, they’re off. Robin’s husband drives the first shift. He pulls out of the neighborhood, gets onto the main highway, and then asks, “So, what’s the game plan? What’s the route?” Robin answers, “Missouri is west, so I know we have to go west.” He looks at Robin incredulously and says, “You don’t know any more details than that? Well, get out the map. We can’t just head west with no more information that that!” And, of course, Robin says, “What map? I don’t have a map.” Robin’s husband sighs and shakes his head. “Oh no! Another road trip without a map! Why didn’t you tell me you were having trouble getting it all organized? I could have helped.” Robin replied, “I didn’t have any trouble. Everything is fine. We’re in the car, aren’t we? We’ll get there. What are you so upset about?”

Do you think Robin had made reservations for where to stay along the way? Do you think she had planned out how much cash they would need for the trip or made it to the bank ahead of time? These and many other details, of course, had escaped planning.


Based on the information provided about the Beales in all three documentary movies and in articles that I have read about them, it is my suspicion that both Big Edie and Little Edie suffered from substantial loss of executive functioning of the type described in the passage above.

That especially seems clear to me in the new movie, in which the Beales’ inability to deal with the situation is contrasted with how quickly and apparently easily Lee Radziwill (who seems to have had superb executive functioning capabilities) takes charge and gets the cleanup project completed in only a couple of months.

In watching the original “Grey Gardens” documentary, it seems to me that both Big Edie and Little Edie made comments suggesting that they knew that lack of this type of skill was a problem for them and wished they could figure out how to solve the problem.

For instance, at one point in the film, Little Edie (who has not managed to get hold of a pair of needed reading glasses) is using a magnifying glass to read from an astrology book.

”The Libra husband is reasonable,'” she reads. “‘He is a born judge, and no other zodiacal type can order his life with so much wisdom.’

“My God, that’s all I need,” she says in an aside. “Order. That’s all I need, an ordered life. You know, a manager. But he’s got to be a Libra.”

Later, while lying on the beach, Little Edie muses, “Perhaps I’d better begin taking care of Mother and bossing her and cooking her some food. I let her do what she wants, but I think maybe I ought to give her cooked meals at certain hours. What do you think?”

But then she focuses on some obstacles to that plan:  “I don’t have any clock. You know, I never know what time it is. She should eat chopped meat and a baked potato at a certain hour for luncheon. Then have a nice little dinner. But that takes timing.”

Big Edie refers to her own need to get organized in the scene showing her birthday party, when accepting a gift of a small spiral notebook from Lois Wright (the daughter of an old family friend).

“You know, I need that more than anything to write things down,” she says. “I have my things written all over boxes, all over the bed, everywhere. I’ve got Epstein’s address, I’ve got all the electricians in East Hampton. Isn’t that a nice book, Edie? Look. Terrific. I can’t be late now and I can’t forget. I can’t hate anybody and I can’t do anything. This little book is going to keep me straight. Straight as a die. Isn’t that nice? I haven’t had a little thing like that in ages.”

Of course, many different conditions that affect the brain can create executive processing problems. As suggested by the Shoemaker paper, however, mold-related illness tends to cause damage that is especially focal in nature – that is, that causes deficits in executive processing abilities but leaves much of the rest of the brain functioning intact.

Although it is difficult to judge someone’s cognitive capacity from watching a few documentary films, many viewers have expressed puzzlement that the Beales seemed to them normal in many respects with regard to their cognitive functioning but nonetheless seemed totally incapable of managing their lives in an effective way.

That pattern is consistent with the focal deficits typically caused by mold-related illness, however. While it certainly is the case that not all patients that have been affected by toxic mold have severe executive functioning problems, a high percentage do seem to have these types of issues but are fairly normal with regard to many other types of cognitive abilities.

Another factor that makes me suspect mold is the fact that despite her limited financial resources and despite her not settling down with a Libra man, reports suggest that Little Edie appears to have lived a fairly ordered life subsequent to moving away from Grey Gardens.

For instance, in the book Edith Bouvier Beale of Grey Gardens: A Life in Pictures, her nephew Bouvier Beale Jr. writes:

A particularly poignant memory of mine was during one of my last visits to see my Aunt Edie. On the way up to see her ninth-floor Florida place, I was admittedly a tad apprehensive, given the fact that the last I had seen any of her living conditions was via the old documentary film. However, to my surprise, as soon as I opened the door, I was treated by a cool tropical breeze blowing off the intracoastal waterway seen through a set of open French doors that fronted a small balcony. Sunshine, sailboats and palm trees were visible everywhere. Her place was neat, clean and orderly, though sparsely furnished. But it is the wall decorations that really stick in my mind: she had hung dozens of Japanese woodcut prints depicting beautiful flowers and delicate maple trees set against a tranquil sea on the walls of her two-room place. In her last years, Edie had appropriately further surrounded herself by her beloved ocean inside and out.


Loving the ocean and wanting to spend as much time as possible near it or in it also is a characteristic frequently displayed by those who have suffered from mold-related illness, with many such individuals reporting feeling better as a result.


Little Edie Beale poses with cats and garbage at Grey Gardens in 1972. Photo credit: National Enquirer. 

The Possibility of Parasites

Shortly after I learned about the effect that toxic mold was having on my health, I facetiously made some comments that I thought that it had purposely made toxins that put me into a stupor, so that I did not have the motivation or the ability to find and clean up the mold.

At the time, everyone seemed to be convinced that certain molds were making toxins only to target microbial competitors (such as bacteria and other fungi) and that the effects that those toxins had on humans and other animals were unintended side effects.

(The fact that Stachybotrys makes toxins that cause damage to olfactory receptors – thus making it even less likely that the mold will be cleaned up since it cannot be smelled – also was written off as a coincidence, at the time.)

Looking at the situation a decade later though, I since have learned many creatures (both large and small) actually do use toxins to exert mind control over various animals. I therefore have come to the conclusion that the explanation that I originally thought was a joke actually is a pretty reasonable hypothesis for why mold had the effect on me that it did.

For instance, a number of recent books – including ones by Kathleen McAuliffe, Ed Yong and Carl Zimmer – discuss some of the ways that various parasites alter the behaviors of their hosts in order to get them to do their bidding.

McAuliffe describes how one type of fungus colonizes and controls carpenter ants:

Even when this fungus, Ophiocordyceps, is a mere spore, there’s nothing docile in its manner. When it comes into contact with a carpenter ant, the spore sprouts tendrils that burrow into the insect and quickly invade its entire body. It then commands the ant to climb a sapling at exactly solar noon. About one foot up, the insect moves to the underside of a leaf on the northwestern side of the plant and clamps down on its main vein – a sturdy point of attachment. At the same time, the fungus destroys the muscles that control its mandibles, guaranteeing that its jaws will stay forever clenched. Frozen like a statue, the host dies and out of its head springs the fungus – a single stalk that grows a fruiting body at the tip. It soon bursts, spraying spores down onto the ground, where new ants pick them up.

David Hughes, an Irish-born entomologist at Pennsylvania State University, was the first to document the phenomenon. “Some of my early papers in 2004 and 2006 were rejected because people just didn’t believe it,” he reported.

Zombie ants – as he refers to them – not only exist but are very common. In rainforests around the world, as many as twenty-two of their grisly cadavers can be found per square yard. “I call these dense graveyards the killing fields,” he said. 

To understand the fungus’s quirky commands to the ant, Hughes has moved leaves with zombie ants attached to them to slightly higher or lower elevations or different sides of the plant. The transplanted fungi aren’t as successful in propagating themselves in these cases, so clearly there is an evolutionary logic behind the parasite’s very precise commands to the ant – but Hughes is hard-pressed to determine what it is.


One important characteristic of fungi is that they evolve very, very quickly. And if fungi are capable of creating chemicals that are able to get carpenter ants to act in that specific of a manner, then the idea that some fungi might be specifically creating chemicals in order to cause brain damage in humans that increases the chance that the fungi can continue to grow unimpeded in houses does not sound unreasonable to me at all.

In addition, I have seen a very large number of cases where people who are living in incredibly moldy environments refuse to consider the idea that mold might have anything to do with their health problems or who – like the Beales – adamantly refuse to move elsewhere. Conceivably, that kind of fierce resistance to recognizing and addressing the problem also could be driven by chemicals being made by the mold.



A TED Talk on toxoplasmosis and other parasite infections by science journalist Ed Yong.


If the brains of mold-related illness sufferers indeed are being hijacked by other creatures, then one possibility is that toxins that are made by the environmental mold and then breathed into the system cause damage to specific areas of the brain directly. Research suggests that this is what happens with the Stachyborys toxin that damages the olfactory neurons, and it could be what happens with regard to the other cognitive damage as well.

However, the Shoemaker study does not look directly at the effects of specific toxins on the brain. Rather, it looks at a population of individuals who have the illness that he calls CIRS (acquired subsequent to exposures to moldy buildings) and then notes that the part of their brains that is associated with executive functioning has been damaged.

An alternate possibility to the idea that the environmental toxins damage the brain directly is that those toxins instead are damaging the immune system – thereby allowing particular pathogens (such as fungi or worms) to reactivate or to establish themselves in the system.

If this occurs, then those pathogens might exert mind-control tactics over their hosts in the more classic ways that have been described in the parasite literature – thereby making it more likely that those individuals would remain in the immune-damaging environment and increasing the survival chances of the pathogen.

One pathogenic parasite that I think may be especially relevant to the situation with the Beales and that has been fairly extensively studied as having the ability to cause behavioral changes in humans is Toxoplasma gondii, a single-celled protozoan parasite associated with housecats.

Here are a few articles about the mind-controlling abilities of this parasite published in the popular press over the past several years.

Scientific American – July 4, 2012

The Atlantic – March 2012

Scientific American – May 1, 2011

The Economist – June 3, 2010


Toxoplasmosis is caused by this microbial parasite that reproduces sexually in the feline intestinal tract but that can establish itself in the systems of a variety of different mammals, including mice and humans.

It is most commonly known as threatening the health of children still in the womb (which is why pregnant women are often encouraged to avoid changing cat litter boxes).

It also has the potential of causing severe symptoms in AIDS patients and in other individuals who are severely immunocompromised.

Toxoplasmosis is one of the many infections that often show up as elevated in testing in ME/CFS patients. Usually this is on IgG rather than IgM testing (thus indicating a chronic reactivated infection rather than an acute new infection). How much of an impact this sort of reactivated infection may have on these patients’ conditions is unclear.

More than half the world’s population and about a quarter of the U.S. population is said to have this parasite in residence. As occurs with many other pathogens, those with healthy immune systems tend to be able to keep the parasite under control and thus do not experience any overt illness symptoms.

Some recent intriguing research looks at whether toxoplasmosis might have effects on the behaviors of humans who otherwise are asymptomatic carriers – possibly making them more inclined to take risks or to be especially careless dressers – however.

Toxoplasmosis has been found to have a strong association with the disease of schizophrenia.

Perhaps the most interesting finding with regard to toxoplasmosis is how it affects the behaviors of mice.

Mice that are not infected with toxoplasmosis tend to be very afraid of cats and to avoid cats – and cat urine – as much as possible.

On the other hand, mice that are infected with toxoplasmosis lose their fear of cats – and actually are attracted to cat urine.

Apparently, the parasite causes these changes in the preferences and behaviors of its host so that the mouse will be more likely to be eaten by a cat, thereby allowing the parasite to sexually reproduce in the cat’s digestive tract.

Whether toxoplasmosis also might cause humans to be more attracted to cats and to the smell of cat urine is currently being investigated. One small study looking at asymptomatic students suggested that infected men were more attracted to the smell of cat urine than non-infected men, but that infected women were less attracted to the smell of cat urine than non-infected women. Whether this finding would hold for individuals with more active infections with the parasite is unknown.

The issue of toxoplasmosis seems relevant to the situation with the Beales for several reasons.

First, the Beales were breeding cats and kept large numbers of them on the premises. (At one point, Little Edie reported that the numbers were down to only half a dozen – apparently the usual number was more like at least a few dozen.) These cats had access to the outdoors as well as the indoors, meaning that they had the potential of picking up toxoplasmosis fairly easily from prey and then spreading it to their human companions.

Considering that the large amount of mold in the home may have damaged the Beales’ immune systems, and considering that the large number of feral cats on the premises and the improper handling of cat feces seem to have pretty much guaranteed that the Beales would have acquired toxoplasmosis infections, the idea that they may have had chronic infections at high enough levels to cause symptoms does not seem to me to be implausible.

in addition, in one of the earlier documentary films, Little Edie brings up the fact that some people had suggested to her that she might have schizophrenia. She vigorously denies this, stating that schizophrenia did not run in their family, and I have seen no indication that she had such symptoms either early in her life when pursuing a modeling career in New York City or later in her life after moving away from Grey Gardens.

Whether she might have qualified for a diagnosis of schizophrenia while living in that house with her mother is hard to know just from watching the movies and reading articles. However, the fact that some people who had met her brought up the possibility of schizophrenia does seem to suggest that they believed there was something odd about her during that time.

If an active infection of toxoplasmosis causes humans (as well as mice) to be more attracted to cats as well as to cat urine, then conceivably that could explain why the Beales were so determined to have such large numbers of cats on the premises.

It also might explain why they were able to tolerate the smell from the cats (and from the raccoons) in the house and made so little effort to remedy the situation. For instance, here is an exchange from the original “Grey Gardens” documentary:

Big Edie: That cat’s going to the bathroom right in back of my portrait. 

Little Edie (making no attempt to remove the cat or clean up the mess): Isn’t that awful. 

Big Edie: No, I’m glad he is. I’m glad somebody’s doing something they want to do.


Of course, since there is no way to go back and run lab tests on the Beales at the time they were living in the house, the idea that they may have been affected by this particular parasite must remain at the level of speculation.

Still, it has been hard for me to come up with any other reasonable explanation for why they would have been able to tolerate the strong smell of cat pee (and raccoon pee) that was said to permeate the entire premises.


The last picture taken of Little Edie Beale (left), in her eighties, with her niece Eva Beale. Photo credit: Edith Bouvier Beale of Grey Gardens: A Life in Pictures. Courtesy of Grey Gardens Official.

Some Additional Thoughts

There appears to be a possible inaccuracy in the film, resulting from the filmmaker using the 2013 interview of Lee Radziwill as narration. Here is the exchange:

Lee Radziwill: I wanted to go back to East Hampton…and have my extremely eccentric aunt be the narrator for my memories. She had a wonderful singing voice and she’d say anything. Her imagination was quite extraordinary. Her daughter Edie – “Little Edie,” we always called her – was almost as eccentric. 

Sofia Coppola: As a child, was she eccentric? 

Lee Radziwill: No, not at all. She graduated from Harvard. It was when her mother locked her up as her companion at Grey Gardens and she never left East Hampton for 25 years.


I’ve not been able to find any other evidence that Little Edie ever attended Harvard (or Radcliffe), though she does state in an interview that she had obtained a substantial number of college credits without specifying where they were from. I thus wonder if Radziwill may be mistaken on this point. (Radziwill was 15 years younger than Little Edie and conceivably may not have been aware of what her cousin was doing at the time.) Perhaps this should be verified before the film goes into a general release.

Although Little Edie stated a few times (including in a taped 1976 interview) that she had dated Joseph Kennedy Jr., there has been some public dispute about whether that actually happened. When I asked Little Edie’s niece, Eva Beale, about this, she replied that she had met a friend of Little Edie’s at a “Grey Gardens” event and that this woman reported having double-dated with Little Edie and Joseph Kennedy Jr.  Little Edie was very upset when Joe Kennedy Jr. was killed in World War II, this woman recalled. (I have found no evidence that – as the Broadway musical would have it – the two ever were engaged, however.)

Although exposure to biotoxins can result in hair loss (in at least some cases as a result of damaging the thyroid), the cases that I have seen suggest that the hair tends to grow back at some point after the exposure has ceased. In Little Edie’s case, however, the hair loss seems to have been permanent since she continued to wear her trademark head scarves until the time of her death. It therefore seems that in her case, the hair loss may have had another cause than the mold exposure.

Toxic mold exposures are accepted as having the potential of causing respiratory problems, leading to the question of whether mold growth in the home might have been a contributing factor to Big Edie’s death from pneumonia. This appears to be what happened to actress Brittany Murphy and her husband Simon Monjack, both of whom died of pneumonia while living in a terribly moldy home, for instance.

Another line of thought suggests that perceptions that some buildings are haunted may be due to toxins made in moldy buildings causing hallucinations, severe anxiety or other psychological effects. Whether this actually can be the case is being investigated by scientists but is, as of yet, unconfirmed. Conceivably, the beliefs of Little Edie, Lois Wright and Sally Quinn that Grey Gardens was haunted may have been related to the mold situation there, however.

Little Edie’s belief that paint fumes may have killed their cat makes me believe that Little Edie herself may have suffered from chemical sensitivities, since in my observation, at least until very recently, few people not sensitive to chemicals themselves have given much credence to the idea that exposures to commonly used chemicals can cause much harm at all (much less cause deaths). This seems relevant since individuals who have been exposed to large amounts of toxic mold often develop sensitivities to chemicals as a secondary reactivity (a phenomenon possibly related to the fact that exposures to Stachybotrys can cause damage to the blood-brain barrier, thereby allowing chemicals that are supposed to be kept away from the delicate neurons in the brain to cause harm to them).

I tend to think that Sally Quinn’s insistence that Little Edie leave behind all the contents of Grey Gardens when she sold the house may have done her a huge favor, since people who have endured long exposures to moldy environments often become very sensitive to even small amounts of the toxins and have a hard time making much progress toward recovery insofar as they continue to hold onto their cross-contaminated possessions. (People who have not previously had extended exposures to large amounts of toxic mold generally do not have any apparent problems with such items, however.)

Although it is possible that the Beales experienced substantial chronic fatigue, I don’t see much evidence that they had the disease known myalgic encephalomyelitis. It seems that prior to the 1980’s, mold-related illness more frequently manifested itself as neurasthenia, a condition that includes some of the general symptoms of M.E. (including lack of energy, cognitive issues and body pain) but that lacks many of the more specific symptoms. My feeling on this is that the change was due to the increasing presence of certain kinds of toxins – including the sewer-associated toxin that I have been referring to as Mystery Toxin – in the environment and that the question of what exactly caused this change to occur is worthy of investigation.

Finally, the idea that the Beales may have been negatively affected by mold growth in their home makes me look at their story considerably differently than I did before I considered that hypothesis. Rather than chalking up their situation to immutable factors (such as eccentricity or nostalgia for a bygone time or staunchness or mental illness or an unsolvable mystery), it now seems to me that what happened to them very well might have been averted if people had known about the effects that mold toxins can have on human health and had taken the proper steps to prevent or address the situation.

Of course, as with most other things in life, having money helps. Although it certainly is the case that many affluent people are exposed to toxic mold as a result of hidden water leaks in their homes or of problematic workplaces, individuals who do not have enough money to maintain their homes or who are living in relatively inexpensive rental housing are even more likely to be exposed.

The situation of the Beales also seems to me to have been related to the fact that women during this period of time had a difficult time supporting themselves financially. (Jacqueline Onassis and Lee Radziwill were not successful at supporting themselves during this period of time either – rather, all of their money was given to them as a result of their “successful” marriages to wealthy men. Later, in the late 1970’s and beyond, Onassis established a career as a book editor and Radziwill worked in public relations in the fashion industry, however.) Whether the Beales might have pursued successful careers of some sort if more opportunities had been open to them is an open question, but the lack of opportunities available to women at the time certainly seems to have been a stumbling block.

If indeed the Beales were negatively affected by mold growth in their home, then a final question is what they would have been like if they had not had that exposure. Based on everything that I have read about them, it seems to me that prior to retreating into the house in the early 1950’s, Big Edie and Little Edie were both outgoing, creative, charming, interesting and iconoclastic women with a good bit of zest for life. Some of that spirit can still be seen in them in the 1970’s when the documentaries were filmed, although with an overlay of – as Radziwill put it – extreme eccentricity added to it.

If the Beales had not had to cope with the exposure to the water-damaged building (and preferably if they had had more money or opportunities to earn money), then perhaps their lives would not have been peculiar enough to warrant being the subjects of a documentary such as “Grey Gardens.” So that would have been a loss.

On the other hand, I think it is quite possible that they were interesting and talented enough women that they might have gained fame for more thoroughly positive reasons – and, certainly, that they might have lived more enjoyable and satisfying personal lives as a result.


A modeling photo of Little Edie Beale, 1940. Photo credit: Cantor Studio, Brooklyn, NY and Edith Bouvier Beale of Grey Gardens: A Life in Pictures. Courtesy of the Estate of Edith Bouvier Beale.

Grey Gardens Links

Big Edie’s 1917 wedding announcement.

The New York Times – January 17, 1917


A letter about financial problems from Phelan Beale to Big Edie Beale.

Letter – August 22, 1934


The announcement for Little Edie’s debutante party.

The New York Times – January 1936


Gail Sheehy’s 1972 article about the inhabitants of Grey Gardens.

New York Magazine – January 10, 1972


The 1975 documentary film.

Grey Gardens


The original 1975 documentary trailer.

Grey Gardens Trailer


Roger Ebert’s 1976 film review.

Roger Ebert – November 10, 1976


An interview with Little Edie conducted by Walter Newkirk in 1976.

Little Edie Live!

Interview Transcript


Lois Wright’s memoir about living at Grey Gardens in 1976-1977.

My Life at Grey Gardens: Thirteen Months and Beyond


Big Edie’s obituary in 1977.

The New York Times – February 7, 1977


Articles about Little Edie’s 1978 nightclub act.

The New York Times – January 10, 1978

People – January 16, 1978


A recording of a phone call between Albert Maysles and Little Edie Beale in 2001.

Phone Call with Edie


Little Edie’s obituary in 2002.

The New York Times – January 25, 2002


The 2006 documentary film.

The Beales of Grey Gardens


The 2007 Broadway musical cast recording.

Grey Gardens


Christine Ebersole performs a song from the musical at the Tony Awards.

2007 Tony Awards


A 2008 book compiled by Eva Marie Beale (wife of Little Edie’s nephew Bouvier Beale Jr.).

Edith Bouvier Beale of Grey Gardens: A Life in Pictures


The 2009 HBO film starring Jessica Lange and Drew Barrymore.

Grey Gardens


The Sofia Coppola interview with Lee Radziwill.

T Magazine – February 7, 2013


The “Documentary Now!” spoof from 2015.




A recent article about Peter Beard.

Town and Country – May 23, 2016


A trailer for the film “That Summer” from the Berlin Film Festival.

The Upcoming – February 24, 2018


A trailer for the general release of “That Summer,” distributed in the U.S. by Sundance Selects.

IFC Films – April 6, 2018


The official brand for Grey Gardens and Edith Bouvier Beale’s legacy, created by Eva Marie and Bouvier Beale with their daughters Tatiana and Maria (Little Edie’s grand-nieces).

Grey Gardens Official


Some additional articles about the Beales.

New Republic – October 12, 2004

Playbill – November 3, 2006

Theater Talk – March 16, 2007

Sunset Gun – May 2007

New York Magazine – May 28, 2007

Michael Braverman – 2008

Vogue – April 1, 2009

The Daily Beast – April 14, 2009

Washington Post – April 16, 2009

SF Gate – April 18, 2009

Pop Matters – April 18, 2009

The New York Times – April 20, 2009

Huffington Post – May 19, 2009

Stranger Than Fiction – January 21, 2011

Tracey Jackson – August 11, 2011

The Dissolve – September 15, 2014

Gods and Foolish Grandeur – November 7, 2014

Salon – March 5, 2015

Movie Mezzanine – March 10, 2015

IBT – March 11, 2015

The New Yorker – June 18, 2015

The Guardian – April 14, 2016

Daily Mail – April 27, 2016

Town and Country – May 23, 2017

Grey Gardens Online

Turner Classic Movies

TV Tropes


Some additional articles about the Grey Gardens mansion.

Architectural Digest – 1984

Architectural Digest – July 31, 2013

Hamptons Curbed – October 22, 2014

Hamptons Curbed – February 9, 2017

Vogue – February 15, 2017

CBS News – February 25, 2017

Hamptons Curbed – May 3, 2017

CNBC – September 22, 2017

Washington Post – October 19, 2017

Business Insider – October 20, 2017

Observer – October 23, 2017

Architectural Digest – November 6, 2017

Bloomberg – November 17, 2017

Elle Decor – November 20, 2017

The New York Times – November 22, 2017

Town and Country – December 20, 2017

Mansion Global – January 22, 2018

Elle Decor – January 23, 2018

Before and After Video

Zillow Rental Listing

Zillow Sales Listing


Some articles about the new movie “That Summer.”

SBS Movies – June 20, 2017

Screen Daily – July 21, 2017

Variety – August 31, 2017

Dog Woof – September 6, 2017

The Hollywood Reporter – September 29, 2017

Deadline – February 16, 2018

W Magazine – April 5, 2018

Indie Wire – April 5, 2018

Vogue – April 5, 2018

Dog Woof Global Page

Press Kit


Little Edie and Big Edie at the beach in 1951. Photo credit: Edith Bouvier Beale of Grey Gardens: A Life in Pictures. Courtesy of the Estate of Edith Bouvier Beale.

About this Article

All quotes from the film “That Summer” in this article are based on handwritten notes that I took while in the movie theater. Although I have attempted to represent accurately what the participants said, it is possible that there are some minor inaccuracies in terms of the exact wording that was used. In accordance with the Telluride Film Festival’s policies, I did not create an audio or video recording of the film and thus cannot use that to double-check the quotes.

I would like to thank Eva Marie Beale and Bouvier Beale Jr. of the Estate of Edith Bouvier Beale for providing permission to use the family photographs shown in this article and for answering a few factual questions related to information provided here. Several of the photographs here as well as many other lovely photographs of the Beales may be found in the interesting and moving coffee-table book edited by Eva Marie Beale and titled Edith Bouvier Beale of Grey Gardens: A Life in Pictures.

Addendum 9/29/17: The Hollywood Reporter published a review of “That Summer” along with a photograph of Little Edie sitting outdoors in the “Disappointed Chair.”

Addendum 10/19/17: Sally Quinn announced that Grey Gardens had been sold and that the furnishings would be sold separately in an auction.

Addendum 11/22/17: The New York Times reported on an estate sale held at the house, in which almost all the Beales’ possessions had been sold.

Addendum 12/20/17: The listing agent for the property stated that the sale of the property (for $15.5 million) had been completed and that the buyers were a couple from New York City who were very familiar with the house and who planned to “lovingly restore it.”

Addendum 1/22/18: The Grey Gardens carriage house – which Big Edie had sold off as a separate residence in 1952 – went on the market with an asking price of $9.5 million.

Addendum 4/6/18: An announcement was made that the film “That Summer” was to be released on May 18, 2018, and a trailer for the film became available.

Addendum 5/18/18: The film “That Summer” was released in theaters and on video in the U.S.

Addendum 9/5/18: The Grey Gardens carriage house was reported as having been sold.

Addendum 2/16/19: Lee Bouvier Radziwill died on February 15, 2019, at age 85.


About Paradigm Change

Lisa Petrison is the executive director of Paradigm Change. Her Ph.D. is in marketing and social psychology from the Kellogg School of Management at Northwestern University.

For more information about the role of mold toxins in chronic multisystemic illness, please visit the Paradigm Change website.

Those interested in the topic of whether other famous people may have had mold illness may want to read the previous Paradigm Change article, “A Moldy Home, A Flu-Like Illness, and the Deaths of Brittany Murphy and Simon Monjack.”

An additional Paradigm Change blog article is called “Could Laura Ingalls Wilder and Almanzo Wilder Have Been Toxic Mold Victims?”

The Paradigm Change website page “Mold Stories” discusses some additional famous people who have had mold issues.

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The book A Beginner’s Guide to Mold Avoidance is a practical guidebook for those hoping to improve their health by avoiding toxic mold.

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