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.
My intention is to write this until it’s done. I don’t know how long it will be. I have an idea of how hard it will be to write.
As I’ve said before, I am writing about the end of Julienne’s life because I need to, for a couple of reasons. One of them is for me. I’ve thought about these days, these moments, every day for a year now. The pain, the heartbreak, the quiet moments, all of them, every day. I’ve thought about writing this for a long time, just to get it out of me and onto “paper”, a way to let the pressure off of my soul, just for a little while. I have no illusions about how long any relief this act brings will last. But any relief is welcome.
The other reason is because I believe Julienne would want the truth of her story told, all the way to the bitter end. For a time, some months before August, she’d become obsessed with the facts of how she might die. She knew in the end that it would be cancer, of course, barring any kind of unforeseen accident. But what shape would it take? That question consumed her. She assumed it would be one of her major organs failing, but which, and what was dying from that like? Most of the people that she knew with cancer seemed fine, then fell out of contact for a few weeks, and she would find out they were gone. Each was a hammerblow to her. Death was mystery enough, but she had no idea what her final days could be like.
Tomorrow marks one year since Julienne’s passing. I have no idea what the day will be like, or how I am going to feel and react, or what will happen. I appreciate all the love and support given to me by family, friends, and strangers over the last year. I especially appreciate you for taking the time to read this. It means so much to me.
Again, there will be no Otter Breaks. I’m sorry.
I love you, all of you.
Saturday, August 3rd 2019
After sunrise following that long sleepless night, I asked Julienne if she wanted to lay on my chest. It was harder for her to breathe when in any position except almost upright (or bent forward at the middle), but I had remembered her being able to sleep that way after her lung collapsed (and before we knew that fact). She nodded and settled into her familiar spot on my right side. I held her as she slept until I myself dozed off.
This, obviously, comes out of chronological order with the story as it stands. I should be writing about our wedding, the happiest day of our lives. It’s been challenging to start, though. In order to do these well, I need to put myself back in the mindset I was in at the time. Most of the time I can. I can feel the emotions, see the world as it was then, smell the air, all of it. Sometimes I can’t, and when I push through and write it anyway the end result is flatter, less colorful, like the hazy and disconnected recounting of a dream. It’s important to me that when I write about our wedding day, I can do it right, do the day justice.
It’s been impossible for me to get there, though. The depression has been really bad lately, the type that makes everything hard to do, every task seem insurmountable. From my birthday through July has been especially challenging, because of the memories. I’ve been reliving the last days and the searing pain of last year. I can’t conjure up the magic of our beautiful and perfect wedding day. Not right now.
As I write this, a year ago today I sat beside Julienne, took her hands in mine, and told my brilliant, kind, beautiful wife that her body was shutting down and she would be gone in days. It is a moment I will never forget, a weight that will never lift. I held her as we cried, as I’d done almost exactly 4 years before when I told her that they’d taken her ovaries and the children we’d wanted so badly.
So I can’t write about the wedding. Instead, I am going to try to write about the end.
Also, there are no otter breaks. I didn’t take any. Sorry about that.
In my head, August 1st 2019 is forever the Last Normal Day. It was the last day of Julienne’s life that did not begin and end in terror. It was the last time that we woke up and did our normal routine. It was the last time she left the house in anything other than an ambulance. It was the last time she would see her parent’s house, the home she grew up in, the one she still referred to as Home very often. It was the last time we’d perform our normal nightly ritual, Julienne in the bathroom washing her face as I filled her water glass and heated her lavender-scented neck pillow to the exact temperature she liked, then got her settled into bed and comfortable before I checked her breathing with a stethoscope again to make sure she didn’t have a lung collapse. It was the last time I settled in beside her and we drifted off to sleep together, looking forward to another day.
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.
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.
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.
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.
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.
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.)
This is Chapter 17 of Love Song by Julienne (ft Cancer). You can click here and scroll down for the older ones.
What I am going to try to write today is the story of, up to that time and for years afterward, the very worst day in the life of Julienne and myself. It’s the day I don’t talk or think very much about. That day is why I was so reluctant for so long to write any of the Cancer Caregiver Feelings posts. Julienne and I would sometimes talk about small, snapshot portions of that day – tiny moments in the storm – but I have never really talked about it to anyone. I spent years avoiding even the thought of that day, and I am very good at avoiding thoughts. I have no idea how this will go.
In my mind, I think of that 24 hour period, from noon on Thursday the 24th to noon of Friday the 25th, as Der Tag. It is German for, simply, The Day. I think of it because I am a fan of history, as the saying goes, and Der Tag was the term used in pre-Great War Germany for the inevitable (to their minds) day to come, when they would mobilize for war against France and Russia. On Der Tag the levers would be thrown, the machinery would turn, and destruction on a level unimaginable even to the people planning it would be unleashed. For me, Der Tag is an abscess in my soul, the source of an unthinkable well of pain and sorrow that is scabbed over lightly, a never-healed scar that is avoided at all costs lest the bleeding start.
That is the scar I will try to open today. That is the well I’ve referred to a few times while I write these stories. I expect a lot of otter, or Lewis or Jules or puppies or something-else-cute, breaks as I go along. When I break emotionally, I just type [break] in the document and walk away, for hours or days or however long it takes me to come back, and when I post these stories I replace the [break] with a picture of something adorable I found during the break to lessen the blow for myself and for anyone who might need it.
I guess I could skip it, or at least portions of it, give a brief sketch like Julienne and I would both offer when telling her story. I don’t want to do that. I feel like it’s important for me to put myself back there, the center of the storm of fear and helplessness and grief. A lot died that day. Julienne and I had to mourn those deaths while contemplating a wholly uncertain future in a hospital room in the wee hours of the morning. The people that Julienne and I were before that day died. But the people we became were born that day, stronger, kinder, and better than we were. Our relationship was broken down and reassembled into a new pattern, our identities forged together into a single whole, an unbreakable alloy both flexible and strong. We needed that to weather what was to come, and the person I am now is defined by and for Julienne because of it. Without her, I’m broken, but I’m still stronger than I was before. I’ve come this far. I can go a little further.
OK. This is it. Der Tag. The Day.
Walking into Hopkins for the first time, it was clear that we were in for a completely different experience from Christiana. Everything about the place seemed to mark it as a state-of-the-art facility, from the design, colors, even the lighting. There weren’t rows of patients sitting on beds lining the halls. It was just a completely different atmosphere. Of course, that impression was just something going on in the back of my mind. In the front of my brain, I was just terrified for Julienne and trying to find her again as soon as possible, carrying the bags full of things she had wanted with her through this ordeal. I made my way through the hospital to the right section and finally found her as she was being settled in her room.