Our Love Story, Part 23: The Beginning of the End

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.

Of course, our “normal” days no longer had much resemblance to more normal times, but we’d adapted well, or at least as well as could be expected. Julienne had a lot of anxiety, which is no surprise, but an Ativan just before bedtime helped calm her enough to sleep. The mornings still held puppy snuggles, we still had meals together and watched our favorite shows and talked, still looked forward to as many days ahead of us as we were allowed. It was still routine, even if the routine was completely changed.

It was a Thursday. In the evening we had an appointment with Julienne’s death doula, or end-of-life guide, or whatever the term is for the person that helps the dying prepare for death (there are some terms that they can’t legally use, like “doula”, because the funeral practices in our country are a litigious predatory scam that targets people when they are most vulnerable and upsells overpriced unnecessary nothings that would make the hackiest used-car salesperson blush with shame, but that’s neither here nor there). We had met with her before. She was a kind and empathetic person who listened to what Julienne wanted and helped her crystallize and plan her vision.

Julienne had very specific thoughts about what she wanted. As I’ve said before, she was a planner. She had a gift for imagining what she wanted overall and then breaking it down into specific elements to create each piece of the whole. Since July 2019 had been in the backs of our minds as the last month of her life for a year, she’d been thinking about it and we’d discussed the various things she wanted. It’s odd, but the conversations we had about it weren’t as sad as I might have imagined they would be. They were matter-of-fact discussions, sometimes brainstorming sessions, sometimes just a musing she had in the middle of an episode of Parks and Recreation. She’d been building the scenario in her head for a while and involved me in it, so I always had an idea of what she wanted.

What Julienne wanted was a home funeral. She didn’t want her body placed in the hands of morticians who didn’t know her, didn’t know how she did her makeup, didn’t care about who the living breathing Julienne had been. She wanted to be washed and dressed and prepared for burial by the people that loved her the most in all the world, her parents and I. She wanted to lay in honor in the living room of her parent’s house for a couple of days, to give the people who knew a chance to see her. She wanted to be buried on her parent’s farm, shallower than the standard six feet, at a point where her remains would still be part of the life cycle, and everything involved – clothes, casket, flowers, all of it – to be natural and organic. Her casket was a wicker basket. She did not want a lid, because she was claustrophobic. Instead, she wanted to be covered in organic flowers. Every detail had been seen to, including sketches she made.

By this point, a lot of the things had already been gathered or prepared. A grove had been created in a field on the farm and the hole had been preliminarily dug in the very rocky ground. The clothes she wanted to be dressed in had long been ordered and waiting for the day. They were medieval garb, of course, a simple but beautiful dress and a beautiful ivory cloak, because she didn’t want to be cold. Her basket casket had been sitting on the bed in her dressing room for a month or so. She’d been planning to spend a day decorating it with a friend, using organic silks and biodegradable glitter to make it less scary to her. Those plans had fallen through, unfortunately, and events outpaced our ability to do it. Some of the things she ordered for the process would arrive while she was in hospice and sat in their packaging on our dining room table, unopened until weeks later.

So while Julienne and I both knew what she wanted overall, this Thursday meeting on our Last Normal Day was for the logistics of it all, how to make it happen, step by step. We needed to know what we needed to prepare her body. We needed to know what we would use to keep her body cold enough as she lay in honor. Who to call and when. How to make sure her mother was legally the person to take possession of Julienne’s body. How she was to be moved and transported. What was to be used to clean her and who would be doing those tasks. How to ensure the eyes and lips remained closed. What her body would be placed on. Everything that had to be done, step-by-step. Her doula, who specialized in home funerals, had a kit already prepared with everything that would be needed.

This was by no means an easy conversation. There were a lot of tears. But like every other moment in the past four years, Julienne, her parents, and I faced it head-on. What needed to be done needed to be done, and all of us were focused on taking care of the extraordinary person whose strength carried us forward throughout it all. Julienne checked in multiple times with each of us. She was adamant that if someone couldn’t do a part, there was no judgment at all. She understood what was being asked. There were also some things she’d didn’t want some people to do, to spare them from something she deemed unpleasant. Julienne was always an advocate of consent and comfort, and she didn’t want anyone doing anything they did not want to do.

Afterward, Julienne was relieved. She knew how hard it was on her parents and me and was grateful for our strength and assurances that we could do exactly what she was asking of us. She felt like it was a lot to ask of anyone, but knowing that we knew what to do whenever the time came, hopefully weeks or maybe even months away (we were talking about how we might be able to get her to the Ren Faire at the end of August, and she really hoped that she could make it to one more Christmas). We went home and sat on the couch together, watching television and talking about other things. Having the plan in place was very clearly a comfort to her. It was just a regular night in our routine, and we went to bed, talking about the next day’s plans.

Friday, August 2nd 2019

Julienne’s day began with a scream of terror.

I was in the bathroom, washing my hands. Just minutes before, I’d awoken her to give her the 10 am meds (extended-release morphine and gabapentin for cough, ibuprofen for her constant low-grade fever, Zyrtec to help her breathing). As usual, she’d been half-awake to take them, then went back to sleep. I’d gone back to my work laptop to see if any new emails had arrived in the interval, then went to wash my hands. As I rinsed, I jumped at the sudden loud scream. I spun and grabbed the towel behind me to get the excess water off and ran into the bedroom. As I got there, I heard Julienne scream again, a note of perfect terror that shook me. It is not a sound I ever wanted to hear, a sound I never wanted Julienne to ever need to make.

She was in bed, visibly distressed and clearly still asleep. I ran to her, already saying Julienne, it’s OK, I’m here, you’re OK, I’m here over and over as I sat beside her and wrapped her in my arms. Her eyes opened wide and looked at me, the fear and horror still on her face, and it took a couple of heartbeats for her to see that I was there. Then she started sobbing and we clung to each other. It’s OK baby, you’re safe, you’re OK, I love you, you’re safe, over and over again as we rocked in each other’s arms, tears flowing.

Julienne began to talk. She dreamt that we’d been walking hand in hand, down a path. We started passing a well, a stone one like in fairy tales. She was looking at it and she stopped, let go of my hand, and jumped in (I don’t know why I did, I don’t know why I’d do that, she said over and over). As she fell, she realized what she’d done and tried to stop herself from falling further. She was in the dark with the bright circle of light above her, looking up at it as it about eight feet down. She saw my face as I looked down at her calling her name and she screamed for me, terrified, as she began to slip further down and screamed and screamed until suddenly she was awake and I was there holding her.

(I thought about this, and have continued to think about it, a lot over the coming days, as the end drew near. I never believed in omens, or prophecy, or seeing the future before then. I am sure there is a rational explanation, just as there is for all of the coincidences of our getting together, the strange but comforting things that have happened afterwards to me and others who love her, there is always a rational explanation for everything, and rational explanations don’t hold a fucking candle to reality sometimes.)

It took some time, but she calmed down. I made her some tea and a little something to eat as the puppies, who’d been trying to comfort her throughout, gathered around her. Julienne needed to write about it and found a picture online that was exactly what she saw (the name of the file she found and downloaded was “a little girl trapped, by rosemetals”). She posted about it on Facebook, one of the very last things she posted on social media.

wp-15966634241731355640525699870447.jpg

The image she found.

But Julienne was nothing if not resilient. It didn’t take her very long to shake off the dream and start her day. Her parents were going to be coming over in the afternoon after I went into the office (I went into the office half-days a couple times a week and worked remotely from home otherwise) to scan old photographs, like they’d done two days before. Julienne loved doing it, sitting with her mom and dad and laughing about them, and old stories and reminisces and memories, and the weird backgrounds her school photographer liked using. When I kissed her goodbye (my I love you beautiful, I’ll be home as soon as I can, let me know if you need anything and her I love you baby, drive safe, be careful, and both of our I will) she was smiling and happy.

She was still in high spirits when I got home around 6 pm. Julienne wanted to show me all of the pictures they’d scanned in. I sat next to her, holding her hand as she scrolled through each one, telling me about them. Her little face in the pictures made my heart burst from sheer adorable overload. We laughed at the stories and the pictures, taking so much joy out of them. It was such a good time. Afterwards, I made dinner, probably mozzarella sticks, one of the small handful of things she still could find an appetite for, and we watched Brooklyn Nine-Nine, something we’d only recently discovered and had been working our way through. Everything seemed OK.

At 10 pm I gave Julienne her meds, the same mix from 12 hours before, plus an Ativan to help with her anxiety and sleep. Usually around 11 or 12 we’d get to sleep. Around that time, though, she said she wanted to watch a Disney movie. Something was wrong. I talked to her about it, and she told me that she was scared. She was scared to fall asleep, scared of her dream in the morning, scared that if she went to sleep she wouldn’t wake up. I held her as we watched Hercules, and afterwards she wanted to watch another, I don’t remember which one (except that it wasn’t Pocahontas because I never wanted to watch that movie because I knew it was a total distortion of actual history, and Julienne agreed but loved the music, but she agreed to watch a different one, and I beat myself up sometimes because I didn’t watch it with her when she wanted to, and regret is a snake with sharp fangs that bite deep in the vulnerable places).

Afterwards Julienne said she was willing to try to sleep. She wanted me to read to her, since it always helped her fall asleep. I was exhausted. Because of her meds schedule I hadn’t slept more than three or four hours straight, I was usually up at 6, and stress and anxiety and fear wore me down. Of course, that didn’t stop me from reading to her. I’d been reading a fantasy novel to her, one of my favorites since I was a kid, and she’d been enjoying the series. I started reading, and she soon fell asleep. I started to put the book down and shut out the light when she woke up and asked me to keep going. I did.

The cycle repeated itself a few times. She’d seem to fall asleep, but apparently she could only lightly doze, and as soon as I stopped reading she’d wake up again and ask me to keep going. Eventually, I no longer stopped. I switched to some other books, fairy tales and the like, things easier for me to read and ones that she really liked. She’d fall asleep, propped up on her carefully arranged pillows sitting almost straight up, then wake up ten to fifteen minutes later, shifting and uncomfortable. Lately she’d been sleeping bent forward at the waist sometimes, her face almost to her knees. I’d wake her up and she’d sleepily smile at me at how silly it was for her to do that, but it felt easier for her to breathe that way. Now, though, it was happening almost every time she slept. She was not very lucid, clearly exhausted, but she would always ask for me to keep reading.

I read to her until the sun came up. I was terrified.

About Alan Edwards

Former cancer caregiver. Husband of the most magical and amazing person who ever lived.

Posted on August 5, 2020, in The Real and tagged , , , , , . Bookmark the permalink. Leave a comment.

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