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Interlude: Not For Sale: Gown, Never Worn
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.
💙
Our Love Story, Part 26: The Funeral
A few weeks ago, on August 10th, the clothes I will be buried in arrived at the house. It was not lost on me that they arrived on the one-year anniversary of Julienne’s funeral, even though I ordered them in May. My life with Julienne is full of coincidences that, as far as I am concerned, are anything but.
There’s nothing to worry about regarding me ordering my burial clothes. I have no plans on dying any time soon. I am sadly healthy, so far as I know. I’m not young, though I am not old either. I’m not at the twilight of my life, but the afternoon has definitely faded to evening and the shadows are getting longer. The reason I decided to order them is very simple: I now understand the importance of planning your death, to one degree or another. It can happen at any time, and it most assuredly will happen, so I’ve decided to start getting things ready, just in case, so I can have them available to whoever is left to deal with me after the end and knows what I want.
As I have learned, it is one of the kindest things you can do for your loved ones.
***
I left Julienne’s side after her parents and brother arrived. I was in shock and numbed. I walked out of the room in a daze. I may have talked to Lucy, there may have been other people there, I don’t know. That immediate period of time is an impenetrable haze. I do remember calling our nurse, Heather, and getting in contact with the death doula, Lee. Those were immediately important contacts. I also remember going back into the bedroom and seeing her family around her and just dying a little more inside, seeing everything and knowing that Julienne was gone. I got on my knees at the foot of the bed and held her leg and pushed my face into the gold silk comforter she’d just recently gotten (after spending many years looking for one with no luck) and screamed into it but no sound would come out and I thought at that moment I was going to die, and I really wanted it to happen.
Read the rest of this entry
Our Love Story, Ch. 22: We Get Married (Not the Wedding)
Well, the world is significantly worse off than it was the last time I wrote one of these. COVID isn’t taken particularly seriously by the rank and file (and certainly not by the federal government) and protests are now rampant throughout the US as a result of inexcusable police behavior that continues every day. It’s a horrible state of affairs. I hope you are all safe and still social distancing and taking care of yourselves and each other.
As for me, I’m hanging in there. It is still very hard and the isolation is difficult, but I get plenty of opportunities to take the pups up to Julienne’s site, walk the fields and woods, read to her, take pictures, and feel her presence there. There have been many hard days, as hard as the days immediately following her death, where I am inconsolable (not that there is anyone who could try, since I’m alone) and bereft and wailing on the floor. The other days I just miss her with everything I have.
I’ve gotten to the point in therapy where I feel like I’ve gone as far as I can, at this stage. With outside activities restricted, there isn’t much I can do socially beyond what I’ve been doing, so trying to get out in the world isn’t part of my life or recovery anyway. I’ve thought long and hard and decided that where I am right now mentally and emotionally is a place that I am unlikely to be moving away from anytime soon. It’s the same place I’ve been for almost 8 months, where the only thing I actively want to do is mourn my wife and do things for her. Instead of caring for her directly as I did for a long time, I now take care of things like her site and our home, where I have been trying to maintain it as she always liked or wanted it to be.
Now that it is fully spring, I’ve turned my attention to our backyard. It was the reason why we bought the house in the first place, a combination of utter wild beauty and spaces like the deck and pool that we loved and spent the majority of our time enjoying. It spent almost a year being completely untended, and it was hard for me to be out there without being completely overcome with emotion. I just couldn’t bear being out there without her. Finally, a couple weeks ago, I went out there and cut grass, pulled weeds, swept leaves, strung lights, uplit trees, and hung places for fairy berries, just like I use at her site. A few days ago, I decided to open the pool, since the raggedy cover made it look wrong. Doing these things for Julienne give me peace and a sense of accomplishment which literally nothing else can do right now. So I’m just going to keep doing it.
Just one part, but a meaningful one.
***
Julienne and I had suddenly become homeowners four days before our wedding. She would fondly point out during this time, and after, that on the lists of most stressful things one can endure, major illness, buying a house, and getting married were always on there, and we were grappling with all of them at the exact same time. We may have found our dream house, but we still had just a few days to pull off the wedding of our dreams as well.
Love Song by Julienne (ft Cancer) Ch. 21: Whirlwind
First off, I hope you all are safe and healthy during this time of uncertainty and insanity. I know most of you reading this live in the US or UK, two countries that claim to be first-rate powers but have managed to bungle all of this so thoroughly, especially here in the US. I can’t believe that we have a criminal idiot in charge of a nation during this actual global crisis. It has me sad and angry and fearful, not for myself, but for the vulnerable, like Julienne would have been. Her anxiety and anger would have both been through the roof right now and she would have been in terror all of the time. For all of you out there, the immunocompromised, the vulnerable, the laid-off, and everyone else besides – I hope you stay safe through all of this, and I hope every person around you is taking this as seriously as it absolutely needs to be taken. I love you all.
Secondly, here my now-standard apology for taking so long with these entries. I’m struggling really badly with grief still, and staying home and social distancing (to be fair, I wasn’t very social before all of this, but it was slightly more than now) have really hammered home just how alone I am. I miss Julienne with such an intensity that it consumes my thoughts and hours. I’m emotionally gutted almost every waking moment. I’m writing this in her office, on her desk, surrounded by the achievements of someone who didn’t make it much past thirty, and I feel such anguish and anger that she’s gone. She deserved so much more and it’s fucking killing me that she was taken from us. I’m absolutely fucking destroyed over this, and it isn’t getting better. Instead, I feel like I’m watching the world move on and I simply cannot. It feels like it will always be August 2019 in my heart and I won’t be able to find anything to move towards. Shit, and that was before the world was struck with a horrible pandemic that will perhaps end up killing millions unless we get our fucking shit together.
So I’m making myself write this, an attempt to stop thinking about the shitshow that is the present and put myself back in August 2015, a time where we were battered and bruised but still hopeful, with an upcoming wedding and beyond that a new life. These next few, covering the final run-up and then the actual wedding, will be pretty picture-heavy. I hope that’s OK. Especially when I do the wedding – it’ll be like me forcing you to flip through our wedding book while I talk about it. I hope you’ll find it worth the time.
Love you guys.
Otter in hat break.
Love Song by Julienne (ft Cancer) Ch. 20: A Short Respite
Spring is starting to arrive here in Maryland. As I posted on Instagram this week, spring was a time that Julienne and I loved more and more with every passing year. The long winters – with the bare branches of the forest surrounding us, the chill wind that cut deep into the otherwise numbed fingers and toes from the neuropathy that was a side effect of her first chemo treatment, the grey days and long nights – took their toll on our spirits tremendously. The first sunny mild day of spring was like a holiday for us. Usually I’d be working that day, so when I got home we’d grab some wine and sit on the deck, listening to music and checking the plants for green shoots while the dogs chased each other around and curled up on the chairs with us. It was a real renewal for us, in the most cliched of Springtime tropes, but very real for us.
This past Sunday, I spent the warm sunny day, as much as I could, on a blanket spread next to her burial site. I packed a picnic, read a book-length poem called The Farm aloud to her (a Christmas present from a damn good friend), threw a tennis ball for the pups, hiked around, and took hundreds of pictures of the surroundings. It was a very bittersweet day. I was glad I could enjoy it, but I missed Julienne so much, because it was the kind of day we lived for, hoped for. I was able to feel her presence with me that day, like the feeling of being awake before her, knowing she’s asleep beside me and feeling calmed by the fact that she was there, but I just longed to be able to hold her hand as we walked along the fields together. I was at peace, and I was consumed with anger at the unfairness that she should be gone.
Love Song by Julienne (ft Cancer) Ch. 19: Party Planning
Sorry, once again, for the delay in new chapters. The last few weeks have, if anything, been harder than the ones that came before. Or they’re different in some way, at least, because the weeks before that weren’t really any fucking good either. There’s a depression that I can’t shake sapping my energy, my will to do anything besides sit at our house or at her site and numbly watch TV or play a video game. Projects are half-completed, things I need to do are put off until the next day, or the next, or forever and ever into the future I don’t really want to think about. I’ve cried and had meltdowns more and more often recently. I feel stuck in a web, or trapped in the dark, unable to find my way and exhausted. I miss Julienne so much.
But I’m trying to push past the lethargy, the desire to make Future Alan do it because Past Alan was a lazy dick and Present Alan is just trying to get through one more day. I want tomorrow’s Present Alan to look back at Past Alan and think, hey good job, maybe mix in a run or some weights next time, you lazy fuck, but at least you wrote something.
Love Song by Julienne (ft Cancer) Ch. 18: Aftermath
I apologize for the long break between chapters. I know you guys will say it’s OK and there’s no need to apologize, but I’m also kind of apologizing to myself. Relating as much of Julienne’s story as I can is important to me and I’ve let myself down by not rallying to face the challenge. I’m not taking myself to task too harshly – I’m being as kind to myself as I possibly can – but I’m also trying to hold myself accountable, so I’m going to explain what’s been happening.
(P.S. – This intro is really fucking dark and depressing without much in the way of uplift. If you aren’t in the mood for it, skip down to the otter break where I pick up from the past again.)
Graduation (or, Freeeeddddooommmm)
This is the twelfth chapter of Love Song by Julienne (ft Cancer). The other ones are listed below because I felt bad about being lazy last time.
Prologue – Julienne
Chapter 1 – Meeting Julienne
Chapter 2 – Finding Julienne
Chapter 3 – A Kiss, and a Confession
Chapter 4 – Of Spaniel Day Lewis, Parents, and Dothraki Love Nests
Chapter 5 – Brioche French Toast
Chapter 6 – Halloween with Becca
Chapter 7 – A Ring, and a Conversation
Chapter 8 – Her Woods
Chapter 9 – Christmas, and a Chase
Chapter 10 – Alantimes Day
Chapter 11 – A Dress and a Concert
So much for managing two posts a week. These are getting tougher, so I’ll shoot for one a week. Anything else will be a bonus. Thanks as always for reading. I love you (*finger guns*).
There is an interesting phenomenon that seems to lurk around any long-anticipated event, especially one that took a lot of work to bring together. There is this high during and after, especially if it is a rousing success. Then, unfortunately, there is a depression of sorts that sets in. This thing that was a labor of love is over and done, and the higher the high the lower the low. Julienne had a day to deal with both of those conflicting emotions. Then, sadly, she had to turn around and look at all the plates that were wobbling and slowing down as she’d kept the Frost Plays one spinning.
Luckily she had Lewis to help her study.
A Dress and a Concert
This is Chapter 11 of Love Song by Julienne (ft Cancer). I’m not going to link to the others because I’m lazy, and also because it’s getting long, so if this is your first time here you might want to look at the other ones. Also, I apologize for the increasing delay between entries. It’s getting a little harder as we go, emotionally, but I’m going to try to do two a week going forward. We’ll see how long that lasts! Thanks for your patience.
***
There is a face and a noise that Julienne makes when she is absolutely 109% happy about something. If you’ve ever witnessed it, you know exactly what I’m referring to. If not, I’ll have to try to explain it to you. First, the face. The eyes are wide and beam with happiness, and are usually looking to the left. Her eyebrows are lifted as high as they will go, and Julienne has a master’s eyebrow raise. Her chin is lifted, her neck extends, and there is a big, delightfully goofy smile on her face. Next is the noise. It is hard to describe. Sort of a “ngh”, or maybe an “umh”, but it is a short, low noise. It is a gesture without intention or artifice, completely instinctive and reactionary on her part. It is, without question, my favorite thing in the universe, because it means that she is at the very height of pleased, contented, perfect happiness.
I’m lucky to have seen it many times. Julienne loves and expresses joy better than anyone I’ve ever seen, and that look was only one that appeared when she had something she really, truly, unabashedly adored. It is different than her surprised happy face, different than her one-the-verge-of-tears happy face, different than her fists-in-the-air-teeth-clenched-happy-rage face. It fills me with joy every time I see it. Happily, I have pictures that capture the moment, and I can fill in the sound, which I do every time I see them. But more on that later.
Alantimes Day
This is the tenth chapter of Love Song by Julienne (ft Cancer). The other ones are listed below if you haven’t read them yet and chronological continuity is your thing.
Prologue – Julienne
Chapter 1 – Meeting Julienne
Chapter 2 – Finding Julienne
Chapter 3 – A Kiss, and a Confession
Chapter 4 – Of Spaniel Day Lewis, Parents, and Dothraki Love Nests
Chapter 5 – Brioche French Toast
Chapter 6 – Halloween with Becca
Chapter 7 – A Ring, and a Conversation
Chapter 8 – Her Woods
Chapter 9 – Christmas, and a Chase
***
After our first race together, Julienne and I hurried back to the apartment, showered, scooped up Lewis, and headed to South Beach for a mini staycation. We got a hotel for the night and spent the day at the beach. That evening, Julienne wore the dress she’d gotten for our engagement photoshoot that she was still planning. There was a clock tower in Baltimore that she loved that was accessible from the inside, and it was a popular place for things of that nature. We were so giddy that day, just so happy to be together and in love. In the evening, we took a stroll on the beach and Julienne was so happy that she was literally leaping in the air. I had to get it on video so I made her do it again for me. It will always, to me, be the essence of Jules, so full of light and joy and exuberance.
Winter in Derenemyn 