Monthly Archives: December 2020
I’m sorry I haven’t written anything for a while. Things are very hard. I told this story on Twitter but I wanted to share it here with you.
I want to tell you about this dress.
First, if you know Julienne or know our story, you understand the context behind the next paragraph. If not, it probably sounds more like a fever dream or a bad soap opera plot or just insane. But it’s 100% true.
On May 23 2019, the day after Julienne got out of the hospital because her lung collapsed and we found out her cancer had spread to her liver and brain, we got on a plane to France in order to attend a period costume ball at the Palace of Versailles called the Fêtes Galante.
After we got back home, Julienne (clearly a costuming enthusiast) came across a stomacher that she absolutely fell in love with. The gifted Etsyer who made it only made stomachers, so Julienne became obsessed with finding the perfect dress to pair with it.
Of course, we knew she was near the end of her life. In July 2018 Julienne was told that her best case scenario was a year. She and I knew it was going to be accurate. So she didn’t have much time to find a dress to match the stomacher she loved. Julienne also knew that she wasn’t going to be able to wear it to a ball or anything of that sort. Versailles was her final trip (though she did hope she could see Disney one more time). But she really wanted it, and more importantly, she wanted to pay for it herself.
See, Julienne was diagnosed with Stage IV cancer at 26, 2 months after her graduation from law school in 2015. Her career plans were destroyed, so she became a healthcare activist and cancer advocate. Her beautiful Versailles gown was paid for by her parents. But she had worked hard throughout treatment after treatment and was proud of it, and she just really wanted to have a beautiful gown of her very own that she paid for with her own money. It was important to her.
Julienne couldn’t find the perfect dress and was going to forget the stomacher when the designer (AtelierSaintHonorePL on Etsy) said that she could make a dress for her to match it. They agreed on a design with the promise that it would arrive by July 31, about 6 weeks away.
We weren’t sure, but we did hope, that Julienne would still be alive then. She was doing ok after the lung collapsed and radiation for the brain tumor, but in mid-June, after the dress was ordered, her lung collapsed again. She had a hard two weeks in the hospital. Things began deteriorating rapidly after that. She was mostly wheelchair bound afterwards and though her spirits were high, we knew. Julienne began preparing for the end.
As Julienne was finalizing her plans for her funeral, on July 31st a package from Poland arrived. Julienne opened the box enough to see the pale blue silk of her dress and was happy, but turned her attention back to her preparations.
On August 3rd 2019, Julienne Gede Edwards went into hospice. On August 6th we came back home, and she passed away on the morning of the 8th as I read The Ocean at the End of the Lane to her. She was 30 years old.
She never took the dress out of the box it was shipped in.
A couple of weeks later, I took the dress out of its box. I cried hard over it (and everything). For a few days this gown became a major focal point of my grief. All I could think about was how much she wanted this dress and how she never even got a chance to put it on.
I decided to get a dress form and display it in the spare bedroom next to our costumes from Versailles. It was a comedy of errors as I struggled with assembling an outfit I didn’t understand and finding the right pannier and all the rest while catatonic with grief. But I did it.
It was a focal point of intense sadness and grief for me for a long time, a physical representation of the hopes and dreams and intentions that are left strewn in the wake of someone’s passing, especially someone so young. She never even got to take it out of its box.
One day, months later, I realized something.
She didn’t need to.
Julienne dearly wanted this beautiful gown, a gift a fairy godmother would bestow but one she herself had worked and paid for, a way for her to claim a piece of a normal adulthood she never got to have.
Julienne didn’t need to wear it to a ball. She didn’t need to try it on. She didn’t even need to take it out of its box.
She knew it was there. She knew it was hers. She knew her work had made a small dream of hers come true.
For Julienne, that’s all she wanted. And she did it.
And that is the only thing that matters.
Life is so so short. Find all the love and joy and magic and beauty in it that you can. Find the people that will look for those things with you and delight in them all.
Thank you for listening. I love you, whoever you are.