If you start a nonprofit, and you’re lucky, you’ll have brilliant people advising you on how to tell a story that will draw folks in and get them involved. Certainly I’m grateful to everyone who has helped me hone the message of Extreme Kids and Lonely Worm Farm. However, if you happen to also be a novelist, the shrinking of a complex story into something practical, precise and goal-oriented can sometimes drive you a bit nuts. You may find yourself wanting to scream from the rooftops: The story is not a tool! It is intrigue and investigation! It is the delight of finding patterns in the murk! It is the antithesis of the easy answer!
In an effort to not go insane, I’ve been trying to let my nonprofit writing hue closer to my creative writing, hence this substack. And hence the latest version of how Lonely Worm Farm came to be, a story I wrote at a residency at the Art Farm in Healdsburg, California, which provided amazing time, space, food and feedback. Last week, I told it for the first time in New York City, to a wonderful group of parents at the Cooke School. It felt good: it was what I wanted to say, both as a novelist and as a founder. Then on the subway afterwards, something marvelous happened.
But you have to read the story first, or the marvelous thing won’t make sense. For now, I’ll just say that it felt like a cosmic pat on the head. Here’s the story:
Hi. My name is Eliza. I am a novelist and artist, and the founder of Lonely Worm Farm. This is story, a long and winding one, of how the farm came to be.
When I was pregnant with our firstborn, I got the chicken pox. The placenta usually protects fetuses from this, so my husband and I hoped for the best. Alas, in our case, it didn’t work. Felix was born with brain damage consistent with the virus, a condition that led to a boatload of other diagnosis including autism and cerebral palsy. I know this sounds sad, but Felix was a happy kid. He scooted around on a walker. He laughed with the wind. He was gorgeous, affectionate, charismatic, funny.
His siblings Happy and Miranda were born a few years later. They were also gorgeous, affectionate, charismatic and funny, but endowed with the sorts of bodies and minds that fit with typical growth patterns. What a difference. When Felix came into our lives, there was the feeling of being cast out of society and landing in a place of waiting rooms, $1000 strollers and grim toned experts referring you to the next grim toned expert. With Happy and Miranda, we were invited into playgrounds and picnics and affordable music classes. We met other parents. We were ushered into a vibrant and expansive community of young families.
To boil it down: Felix was seen as a problem; Miranda and Happy were seen as children. I don’t mean that everyone who saw Felix recoiled or started suggesting solutions–although many untenable solutions were tossed our way. But his presence made most people uncomfortable.
When Felix was seven, I started Extreme Kids & Crew, an arts and play center for kids with disabilities and their families. At Extreme Kids, Felix didn’t cause a stir. Everyone there had a kid who didn’t fit in. On the opening day of our first playspace, a little girl named Abby had an epileptic fit. Being the host, I felt bad, but Abby’s mom was like: no, it was great. It was the best place we’ve ever had a fit. The other parents saw that Abby was being taken care of and didn’t raise the anxiety level by fluttering around, making things worse. Often at Extreme Kids, families would come in for the first time, the kids would start playing and the mothers would start crying. They had found a place where their kids were accepted, where everyone could relax. And with the relaxation came the tears.
I can breathe here, people would say.
It’s like oxygen I didn’t know I was missing.
It was such a powerful feeling. And so much of it had to do with acceptance. I hadn’t dwelled on acceptance that much before because it was such a painful subject. When I was a kid…. Oof. We all have our stories of being the one not invited to the party, the last one chosen for the team. Whatever it is, we all know that pain. I didn’t realize how much of it I carried around with me until experiencing the freedom and warmth at Extreme Kids. Since then, I’ve focused my work on creating little worlds–both on the page and in person–where acceptance is at the root, where we can practice it, cultivate it, and feel its transformative power.
When Felix was ten, he moved to a residential school in New Hampshire. It had become too dangerous, him living at home. And we found a beautiful place on a mountaintop, with wheelchair accessible paths, wild blueberries, a lake to swim in, bears, bald eagles, trees. Felix loved it there. His color improved. He started sitting up straighter in his chair. He made friends with his roommate. What was so great about this place? Well, there was the predictable structure and 24 hour support we could not provide at home. Just as importantly, there was the mountain. The people at the school understood its power and incorporated it into their work.
Once, walking Felix around the campus, I saw a boy roaring with all his might and punching the ground under a tree. A staff member stood about twenty feet away, a walky talky in hand. If he needed help, help would come, but for now, things were OK. Yes, the boy was unhappy, even violent, but he was allowed to express it. And the tree could take it.
I have always found trees to be incredibly helpful. I know. We haven’t reached Lonely Worm Farm yet. We’re getting there. And this is important. When I was a kid, I loved to climb trees. I never felt lonely in a tree, I always felt held, understood, accepted. Later, as a young mother grieving for my child who couldn’t climb a tree, who couldn’t say maple, magnolia, elm, the trees helped me again. I would walk through the forest. I would see that every tree has its own shape. Yes, there is a general form, what’s called the habit of a tree. Spruces taper to a tip. Oaks spread their branches wide. But each individual tree is unique, the paths their branches take, the spaces between them. Some trees are massive. Some are spindly. Some have limbs lopped off, burn marks, all kinds of growths and protuberances. Trees bear their diseases, their scars, their bugs and cobwebs for all to see. What I find interesting is that most of us find trees beautiful, in all of their shaggy, irregular splendor. We have a harder time finding ourselves beautiful in all our shaggy, irregular splendor. Thus we get trapped in ideas about one kind of beauty, one kind of body, one kind of mind, one stage of growth… Our own appreciation of trees teaches us differently. We have much to learn from them.
So when Felix graduated from his mountaintop school, I wanted to make sure that he and the people caring for him were near trees. Not the manicured trees of parking lots. But wild trees, trees that remind us that we all have our own shapes, that nature is inclusive.
Looking for places like this, I discovered the Camphill Communities, an international movement started by students of Steiner where people with and without disabilities live and work side by side, farming, candlemaking, weaving. The villages that I visited were nestled in the countryside, the people grounded and friendly and committed to help one another live in tune with the natural world. I loved these places, but they are organized for people who can get around on their own steam. Felix needs 24/7 care and uses a wheelchair. Even if he had a different sort of body, and could have taken part, their wait lists can stretch for years.
I started thinking about a Camphill-Extreme Kids mash up. A place where you could do all the great stuff they do at Camphill–ecological farming, artmaking, community celebrations–but you wouldn’t live there. If you didn’t have to worry about housing, so many more people could participate. From Extreme Kids I knew that people could come with their own support staff or family. We wouldn’t need to provide for their care. We’d just need to provide an inclusive, welcoming farm where visitors could connect with nature and each other.
In 2020, in the height of the pandemic, my husband and I bought a 29 acre plot in the Hudson Valley, 70 miles north of New York City. There was an old farmhouse, a pond, a barn, a hayfield, wetlands, a steep sloped meadow and a woods with beautiful white pines, sycamores, sassafras, and maples. We named it Lonely Worm Farm in honor of a lonely worm we disturbed during a drought in August. We founded a non profit and dedicated it to Art, Ecology and Inclusion.
In 2022, we hired a farmer with a degree in eco-psychology and transformed a rocky hayfield into the Everyone Garden, a diverse two and a half acre plot of vegetables, flowers, and baby trees. One day it will be a food forest. Now it is a beautiful landscape featuring a wheelchair path lined with berry bushes and waist high planters. A day hab group from the Arc helped make these planters and they made benches too, so you can rest if walking tires you. The day hab group started coming in the fall of 2022 and soon became an integral part of the project. In 2023, we hired an art teacher. He taught the group how to harvest clay from the soil and make tea cups. I taught them how to harvest lemon verbena and make tea.
These days, Felix is still at his residential school, but he visits Lonely Worm Farm and is proud of it. Hopefully within a year or two, he will live nearby and be fully integrated into its rhythms. We have now partnered with In Flight, an excellent disability organization for whom we host a year round, 5-day-a-week arts and ag program for adults. We also do job training, run an art gallery and a farm store, and put on workshops and events for the wider public. The idea is to bring people to our land and let them explore in their own way. Maybe it’s picking blackberries. Maybe it’s sitting in the shade, listening to the birds. Maybe it’s practicing acceptance of mud and mosquitos. Maybe it’s climbing up the white pine. However it works, we hope that visitors will feel a spark of connection–and maybe even get a whiff of that strange and marvelous sense that we all belong to each other, tree, person, and worm.
If this interests you, I write about Lonely Worm Farm on my Substack, Wayward Utopias. You can also visit our website, or even better, visit in person. If you’d like to partner with us, volunteer, donate, or know someone who would be great for our board of directors, send me an email and we’ll set something up. I’d love to talk with you.
After my presentation, the Cooke Center parents and I had a lively, intimate, supportive discussion, but that wasn’t surprising. In my experience, discussions among parents of kids with significant disabilities are usually like that. What was marvelous and unusual happened on the C Train afterwards. I was holding the pole, reflecting on the parents I’d just met and looking forward to dinner, when a young woman detached herself from her friend. Apropos of nothing and wanting nothing in return, she told me, “I just have to say it, you are the most beautiful woman I’ve ever seen.”
I am a 58-year-old mother of three who looks like a 58-year-old mother of three. It’s been a while since I’ve received such a complement, and certainly not from an attractive young woman with long yellow and green cornrows and a fine sense of style. I thanked her and said she was beautiful, too. As was her friend. I told them that the talk I’d just given was about beauty, and how we can see it in the trees, but not always in each other. They nodded in recognition.
To be with two people I didn’t know, on the New York City subway, different ages, different colors, different backgrounds, no names exchanged, none of that, just a momentary acknowledgement of the beauty of trees, and ourselves, in all our shaggy, irregular splendor? Right after I’d told that story? Wow.
Sometimes writing feels like pure magic.
You are such a source of inspiration!!! ❤️❤️
This is a beautiful story. I’m going to visit and I want you to put me to work when I come to the farm. Thank you for all you do for kids and parents.