Skip to content

Grey Gardens

Review of 1975 Documentary

Grey Gardens was a ground-breaking documentary in 1975; forty years later, I’m still fascinated. The film takes you into the raw, real lives of a riches to rags mother and daughter pair who maintain their highly educated and aristocratic personalities among the squalor of their crumbling East Hampton New York mansion. Both women are named Edie, so they become known as “Big Edie” and “Little Edie.” After losing their wealth, mostly due to Big Edie’s divorce to her lawyer husband, they become reclusive in the only thing Big Edie got from the divorce, the “summer home” in East Hampton. 

The mansion becomes rundown and unkept, and the women end up sharing the house with many cats and raccoons. They also happen to be the aunt and cousin of Jacqueline Kennedy Onassis. The loving, but often tumultuous relationship between these two women is like a train wreck, you can’t look away. They pull you in with their bizarre adaptations to losing everything except the house “Grey Gardens” that has become uninhabitable. They are basically living off their past and their regrets, and continuously lamenting and reminiscing about their lost high society lives. Big Edie is a realist while Little Edie is a wise, but eccentric philosopher. Over the years, the film has earned a cult-like following and is a must watch for any film enthusiast. 

This documentary also inspired these spin-offs: The Beales of Grey Gardens, 2006 (basically a part-two of the original); Grey Gardens the Broadway musical, 2006; Grey Gardens, 2009, the HBO film. This movie is interesting because it gives a back story to Big and Little Edie. Lastly, That Summer, 2017, created from previously lost footage from a documentary about East Hampton by Lee Radziwill, Jackie’s younger sister. This documentary was never completed, however it was during this filming that the creators of Grey Gardens – Albert and David Maysles – discovered the Edies and decided to make the now classic 1975 documentary.

Share

Connecting Through Care

Cynthia Bissell’s Lifelong Commitment to Tracheostomy
and Ventilator Support

Cynthia Bissell

In July 1993, Cynthia Bissell faced the challenge of caring for twin sons, Eric and Aaron, born three and a half months prematurely. While Eric struggled with spastic quadriplegic cerebral palsy, Aaron faced severe respiratory issues, including bronchopulmonary dysplasia and acquired subglottic stenosis—a condition caused by ventilator tube damage during his time in the NICU. At just one month old, Aaron underwent tracheotomy surgery and remained oxygen-dependent for several years. After three months in the NICU, Cynthia was able to bring her twins home.

​During the twins’ early, difficult years, Cynthia was often housebound and relied on the internet for information and support. Finding limited resources on tracheostomy care, she combined her nursing background and computer skills to create “Aaron’s Tracheostomy Page” in 1996. This website, dedicated to her son Aaron, quickly became a crucial resource for families in similar situations, highlighting the significant need for accessible tracheostomy information.​

Aaron Bissell
Aaron Bissell

Over the years, Cynthia’s efforts have evolved to keep pace with technological changes and the needs of the community, moving from message boards to social media platforms. Today, her Facebook group, with over 8,000 members, serves as a vital support network for individuals and families managing tracheostomies and home mechanical ventilation.

A Dedicated Start
Cynthia’s initial website offered crucial information for families managing pediatric tracheostomies. Taking on care responsibilities for a child that has a tracheostomy can often be overwhelming and confusing for parents that have little knowledge or experience doing so. For new parents in this situation, Aaron’s Tracheostomy Page offered a lifeline, providing a wealth of practical information on the ins and outs of pediatric tracheostomy care. This effort was later expanded into a guide published by Jones & Bartlett in 2000. Although the guide is now out of print, it marked an important step in providing valuable resources to families. Cynthia also created a listserv and message boards to facilitate discussion and support among users.

The pediatric board quickly gained popularity, and Cynthia fondly recalls, “The connections we created via this board became friendships that are still strong today.” The success of these boards led to the organization of three national tracheostomy conferences, which featured expert speakers and offered meaningful activities for families. “We had three national conferences, in 2004, 2006 and 2008. The first two were in St. Louis, the third was in Cincinnati. We had world-renowned otolaryngology speakers and lots of fun activities for families of kids with tracheostomies,” Cynthia adds. These events provided essential networking opportunities and support for families.

Adapting to New Platforms
As social media began to rise, the landscape of online support changed. “Eventually, with the coming of social media sites—especially Facebook—message boards and listservs became obsolete,” Cynthia explains. Her focus shifted from maintaining a website to managing a Facebook group, which now has over 8,000 members. “My website is still live at tracheostomy.com, but I don’t keep up with it anymore,” she notes.

​Cynthia’s Facebook group now serves a broad audience, including both pediatric and adult tracheostomy users, as well as those who use home mechanical ventilation. Although Cynthia acknowledges her limited experience with ventilators, her extensive background as a registered nurse for over 40 years provides her with a broad understanding of special needs care. “I had a trach as a baby, and I’ve had two children with tracheostomies,” she shares.

​​Evolving Support
The transition from message boards to Facebook has had its challenges. Cynthia notes, “The message boards were better than Facebook in my opinion. They were divided into topics and easier to read, search, and follow.” Despite this, she recognizes the value of Facebook in reaching a wider audience. “Topics on Facebook tend to get buried quickly, but the group still provides valuable support,” she says.

The focus of the Facebook group remains on providing peer support and networking. “Popular topics tend to be either adults with trachs due to chronic disease such as laryngectomies for cancer, or pediatrics with preemies who have airway or respiratory problems,” Cynthia explains. The group also facilitates the sharing of supplies and other resources, enhancing the support network.Managing a large Facebook group comes with its own set of challenges. “I even have trouble keeping up with the Facebook group, as it has so many members and it is very busy,” Cynthia admits. Nevertheless, she is committed to maintaining a positive environment. “I do occasionally get reports of problem users and block them,” she says. “Thankfully we don’t get a lot of that, and most people find the group very helpful.” Cynthia has established a “terms of service” – which prohibits such things as selling services, solicitations or fundraising, and making false or defamatory comments – to help ensure the group remains a supportive and respectful space.

A Lasting Commitment
Cynthia’s work in supporting families with tracheostomies and mechanical ventilation highlights her dedication to care and community. “While face-to-face support groups are great, the internet has made it possible for people to connect from anywhere in the world,” Cynthia observes. Her Facebook group stands as a testament to her ongoing commitment to providing support and fostering connections among individuals and families facing these challenges.

For those looking for support and community, Cynthia Bissell’s Facebook group offers a valuable resource. Cynthia’s journey and the community she has built continue to offer hope and assistance to many navigating the complexities of tracheostomy and home mechanical ventilation care. 

Source: Brian Tiburzi Ventilator-assisted Living, Volume 38, Number 3, July 2024

Share

About Aunt Clara

Aunt Clara was born in the town of Grafton in the state of Massachusetts. Clara quickly became a champion of equal rights for women. Upon her arrival in kindergarten Clara became a polarizing figure by tearing down the girl’s playhouse and leading the girls in a rousing defeat of the boy’s team in a brutal game of duck, duck goose. Clara then petitioned the principle of the school to allow her to speak to the Board of Education. At the hearing the 6-year-old Clara got a rousing applause when she spoke these words. “The day will come when boys will recognize girls as peers, not only at the games of children, but in the councils of the nation. Then, and not until then, will there be the perfect comradeship, the ideal union between boys and girls that shall result in the highest development of the race.”

At the age of nine Aunt Clara raised a champion hog that she named ‘Eyeball’. Eyeball won three awards; two for size and one for beauty. Clara continued to excel in high school winning three spelling bees and first place prizes in two separate science fairs. She cured her younger brother of nail biting by standing by his bed while he slept and repeating the words “my nails taste really bitter.”

Aunt Clara received a full scholarship to the prestigious Wellesley College in Massachusetts when she was just 16 years old. It is said that during her time in college Aunt Clara coined the term ‘hairspray’. During World War II, aerosol cans were developed by the U.S. Department of Agriculture to better distribute insect spray among soldiers and protect them from malaria. After the war, the beauty industry caught on to the potential of aerosol cans. The first to package a sticky, hard, resin-based spray was Chase Products. Aunt Clara took one look at the spray goo as it was applied to a friend’s hair and said “I want some of that hairspray.” The name stuck and has been used ever since.

Aunt Clara was a woman of extreme beauty and intelligence and was not shy about speaking her mind. Most men were both intimidated and intrigued by her and she received many proposals of matrimony. It was said that Prince Rainier of Monaco was enraptured by Clara and sent her love notes and flowers daily. It was only after being spurned numerous times and for many years by Aunt Clara that he finally settled on his second choice, Grace Kelley.

Aunt Clara dated all three of the Kennedy boys during their formative years and she found each one wanting in their own way. Ted took it hardest and also took to the bottle, but it was said that he could never drink Aunt Clara off his mind. Howard Hughes also fell in love with a young Clara and had paintings of her drawn by several different renowned artists. He filled up rooms in his home with her likeness and it was said that staring at them all day, every day finally drove him insane. It was also said that Aunt Clara’s face launched a thousand ships and her fiery personality destroyed a thousand men. Aunt Clara finally surprised everyone when she married the mild mannered Burt, who had written thousands of poems about her and followed her around like a puppy dog.

Aunt Clara has many accomplishments on her resume including climbing Mount Everest twice, flying solo around the world, being chosen as the first woman to land on the moon, teaching both biochemistry and math at Harvard University and riding a unicycle across the United States of America. Wherever she has been, Clara has always dispensed advice and assisted people with their problems. Aunt Clara began writing an advice column in the late 1970’s and has achieved worldwide fame for many of her writings.

Share

Cindy’s 10 Facebook Tips

Facebook is great for reconnecting and staying connected to family and friends. But it can also be a nasty place.  If your Facebook experience is doing more harm than good, maybe some of my tips can help. If these tips don’t work for you, before you leave Facebook completely, deactivate your account and take a break. Here are my 10 tips to enjoying Facebook (in no particular order):

  1. If you want to just enjoy Facebook and not get your blood pressure up, “Unfollow” (don’t unfriend) people who post things that annoy or upset you.
  2. Don’t post anything political or religious.
  3. Don’t comment on someone else’s post, unless it’s a positive comment and NOT political or religious. If you must respond, just “like” with an emoji, no text.
  4. Be positive, try to entertain, teach or inspire.
  5. Don’t reply to posts from people or groups you don’t know. By answering stupid questions like “what do you call the end of a loaf of bread” you will get more stupid stuff in your news feed.
  6. Post awesome photos past and present. People like photos.
  7. Use private messages for private things.
  8. Don’t accept friend requests from people you don’t know, unless you have friends or interests in common.
  9. Treat people as you would face to face. The golden rule applies here. But some people are just plain nasty; block them.
  10. The real jewel of Facebook is private groups. If you don’t belong to any groups, you are missing out. Find something that you are interested in and join a private group. You don’t get the same nasty comments in private groups. People tend to be kinder and often very supportive.

I know a lot of people who complain about Facebook and it’s usually because they don’t understand Facebook’s algorithm, therefore they get stuff in their newsfeed that only feeds into their dislike for the site. By following these tips, you can customize Facebook so that it’s enjoyable. But it does take some time to weed out the crap, especially if you have lots of ‘friends.’

Share

Pearl Harbor Day

A little piece of family history on this Pearl Harbor Day 2021. Today marks the 80th anniversary of the Japanese attack on the US fleet at Pearl Harbor. This is a page from my great grandfather Joseph Winterkorn’s ‘Ledger’ as he called it. This is where he documented his finances and important events in his life. I received a copy of this ledger several years ago from my Uncle Arthur who lived in Hawaii and worked for the Pearl Harbor port authority.

Greatest news that ever came after days of worry about the fate of our dear son Arthur in the far away Hawaiian Islands, where on the morning of Dec 7th 1941 the treacherous forces of Japan swept over Pearl Harbor causing destruction of life and property to the unsuspecting inhabitants, was a telegram received here on the night of Dec 13, 1941 at 11:15 saying:
“Alls well. love Arthur Winterkorn”
Indescribable are the feelings which those few words carried to us all.
He left the home for those far away lands on the 6th of August 1941 with so much hope and ambition to prepare himself for a better future in life.
Fate grant him life and success.
Written Dec 14th 1941.

Joseph Winterkorn, 1941

Share