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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.
A few Thanksgivings ago, Julienne wrote this. It can be hard sometimes to find gratitude. I am still, and always will be, in awe of her strength. I love you and miss you every day, my love. I’m grateful for you.
Yes, I saved this post for Thanksgiving. I like to be seasonal, sue me.
Truth is, I’ve been struggling to write this post for a while now, mainly because this blog is largely comprised of snark, sarcasm and side eye, and I didn’t want you to worry that I’ve gone all Kumbaya on you. Also because the gratitude I feel is so profound that it’s hard to find the words. But I’m gonna try because it’s important to tell people that you appreciate them and again, I like to be seasonal.
Doctors, Nurses, and Medicine in General
I realize that for many of you, this section falls a little flat because most young people don’t have to worry about finding a doctor that does more than the standard “turn your head and cough” until they hit middle age. Before I was plunged headfirst into a health crisis, I had no idea about the…
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Just a note to… well, note that I’ve changed the blog name from Me and My Shovel to Winter in Derenemyn. This affects nothing and no one but I just thought I’d mention it if you’re one of those people used to the old name. I’m more than happy to explain why, where the original came from, what the new one refers to, etc, but I’m pretty sure no one gives a swut. Love you guys. *finger guns*
I meant to post this in July, but I never got around to it. It helps explain where I’ve been.
Note: This was very hard for me to write, because he deserves better than the words I can muster, and this was the best I could do. I would need ten years and ten thousand pages to properly articulate what he meant to me and all the multitudes of people who loved him, and even that would never be enough.
He was my buddy. Not just my buddy, though. He was my ever luvin’ buddy, and also everyone else’s. That’s how he signed every email I ever saw: “Your ever luvin’ buddy, John” or sometimes YELB if he was in a rush. I sometimes referred to him as MELB for that reason. That sticks with me a lot, because it’s one of the truest things ever said. John Corradin really was your ever luvin’ buddy. No matter how annoyed he might get, no matter what horrendous decision you made in a game, one thing never changed: he loved you, he’d always love you, and he’d forever be your buddy.
Here is a news update, and also the best song of all time.
So this is going to be a quick post to share something amazing, but it needs a back story:
In February, we were effectively kicked out of our IVF clinic with whom we had been working for nearly a year because SOMEONE had to go and have a recurrence. Then, in a staggering exercise of paternalism and bureaucracy, a heretofore unknown to us “risk-management team” and an “ethics board” decided that due to my recurrence, I had a greater likleihood of Disney momming this potential child, so they were going to prevent us from even retrieving eggs from our donor–even if we used a surrogate–until I got a life expectancy from my oncologist (who, btw, responded to that request with an, “umm no, I can’t even give you one of those until after treatment which we are postponing for the moment anyway. Also why the heck would they need that if you’re not…
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Fair warning: If the title wasn’t enough to clue you in, this is a post about jackin’ it while getting your insurance company to pay for it. If you have zero desire to find out what it’s really like to provide a sperm sample, it’s completely understandable. If, however, you’ve always wondered if it’s like how they portray it in the movies, or you’re curious to discover what materials are provided for the purpose, read on. I promise to try to make it more funny than gross. Also, the pics may feature adult themes. Not like my junk or anything, but, ya know, fair warning and all that. You might see part of a heavily photoshopped woman’s butt.
Also, a hearty welcome to the new followers I picked up this week! You deserve better, but hey, you didn’t know what you were getting into.
A word from my wife.
When my doctor told me, my eyes watered but I didn’t cry. I asked questions. I held it together and breathed slowly until I got to the car. I always insisted on going to these appointments alone, insisted I could handle it so I needed to do that now. I breathed more and I didn’t cry. I thought about how to tell my husband. I thought the words a few times, and then I called him. I thought the words over and over, but when they finally came out of my mouth, the sound of them was too intensely real to hold back the tears: I told him they found something in my lungs. He said he was coming home. We talked about how to tell my parents. I told him I had some errands to run and then I’d be home, too.
I called my mom. I sounded upbeat…
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It’s been a couple years since I did this, but I thought that if there was ever a year that deserved to be celebrated by a two-bit writer on a pointless blog, it’s 2016.
OK, wait a second. First aside (and it might be a record coming in on the second sentence – although the chances that I’ve done it before in the first sentence is becoming likelier the more I think about it): it’s been a long-time habit of mine to be self-deprecating and insulting to my abilities and this blog. It’s a tradition, of sorts, mostly because I try to be humble and also that I recognize that, in the world of writing, I’m barely the speck of dirt that will one day invade a pore and give rise to a pimple on the ass of the world’s literary giants. I might not even be that important. Anyway, I recognize that my talents are limited and this blog is rarely updated and barely worth the cost of reading it (opportunity costs, folks. You could be learning about dimorphism or the Egglet-Burke Theory or how to properly season a cast-iron skillet instead of wasting your time here). So I know these things. But I’m going to take a conceit from my favorite gaming-related blog (The Angry GM) and, instead of being self-deprecating (read: honest) about my abilities and this site, I’m going to go the opposite route. For the remainder of this post, I will assert that I am an amazing writer, the GREATEST WRITER, and this site is the most prestigious and exclusive gathering of the greatest distilled thought that millennia of evolution have worked towards in building to that apex of human development, me.
So I’ll basically pretend like I’m almost every other blogger ever.