Julienne Gede Edwards left the world on August 8th, 2019, just before 11 am on a bright morning as she lay in her bed. It was where she’d wanted to be at the end. As it happens, despite having a lot of people in and out of the house during her final days, she and I were alone. I was holding her hand and reading The Ocean at the End of the Lane aloud, her favorite book and the one she’d asked me to bring to hospice with us to read to her. I checked her oxygen levels as I did periodically, to make sure that she was getting enough to her blood. The last week of her life required a lot of oxygen so she wore her nasal cannula as she’d done for over a year by that point, as well as a mask that she hated over her nose and mouth to give her additional air.
The mask was new since the previous Saturday when Julienne went into the inpatient hospice facility to get her shortness of breath under control. In the beginning of July she needed about 4 liters of oxygen per minute to be comfortable. After her lung collapsed for a second time, she needed 7. By the end she needed 20. She didn’t ever like the mask and neither did I, since it covered her face and made her increasingly-quiet words harder to understand. Julienne tolerated it when she was lucid, but as things progressed her agitation led her to pull it off her face constantly. It could be difficult to get her to put it back on again. I would let her have it off for as long as I thought was good, until I saw her lips turning bluish, and then I would ask her if it was ok for me to put it back because she needed air. She would nod, and I’d put that hateful mask back over my wife’s beautiful face.
That morning, though, she was resting comfortably. It had taken a few days to get her to be comfortable and calm the agitation that made her unable to sleep more than 20 minutes at a time and also made her suddenly get out of bed to go elsewhere, always a challenge when tethered to two tubes leading to large oxygen concentrators with limited range. Resisting her in those times was pointless. Julienne had a strong will her entire life, and it would not be thwarted even at the end. I would ask where she wanted to go, to the bedside commode, to the chair, to the bathroom, wherever. Then I would walk behind her, arm around her middle to make sure she didn’t fall but hurrying to keep up with her. It was easier when others were there, so I could make sure that her oxygen lines were good and could switch to a portable tank if needed.
One memorable time, shortly after we’d returned home from hospice at her request, she’d decided that she was walking to the living room. It was the first time she’d done that since our return, swinging her legs out of the bed and walking forward with purpose and more than willing to snap at us for holding her back. We didn’t know where she wanted to go, but it wasn’t the bathroom. She wanted to go further. So I unplugged her cannula tube from the concentrator and attached it to a tank while 4 people pleaded with her to give us a second. I handed off the tank and ran back to the concentrator feeding her mask tube, unhooked it, slid past the crowd and told them to let her go ahead. There was another large tank of oxygen in the living room and when she was close enough I connected it.
Julienne wanted to sit in her nook, which was a chair next to our bookshelves that she’d loved to curl up in and read or use her phone or watch TV or just talk to our dogs. She’d set her tea on a bookshelf with a blanket over her legs and be content. That night, she wasn’t content, but she wanted her nook. We got her there. She was hot so I set up a fan to cool her down. I took a few minutes to eat the meal I’d promised I’d eat half a day before while her mother and our friends talked to her. I ate the half sandwich I’d promised, then I went over to her, got on my knees, and laid my head down in her lap and cried.
Thursday morning, though, she was calm. She’d slept through the night, the first time since the Thursday night before when she’d woken up screaming from a nightmare Friday morning. Julienne wrote about it on Facebook, her last post besides the one telling folks she was going into hospice. She didn’t sleep through the night again for a week. It was good to see her finally relaxed, breathing deep and peacefully. We were nearing the end of the book, the curtains open so she could see the woods outside our windows if she wanted, and I’d pause sometimes to tell her that I love her, that I’d always be beside her, holding her hand, and that I promised I’d never leave her. I did this because of the last conversation I’d get with her, when she asked me to promise that very thing over and over until she calmed down and fell asleep. I love you, I’d say, I love you, I’ll always love you, I’ll always be next to you, holding your hand, always, and I promise I’ll never leave you, I promise, I promise. I love you. I still say it today, every day, I still tell her that I promise, that I love her, and that I’ll always be with her.
Lucy was in the room with me. Lucy has been one of Julienne’s best friends since they were 18, despite being separated by the Atlantic for practically all of those years. They share the magical whimsical worldview that was always incredibly important to Julienne and makes her the enchanting magical being that she is. Lucy was quiet as I read, despite my terrible English accents for the characters that I used because she is kind. We’d recently changed the bedding around her and needed a couple of things from the store. Our friend Kurt was willing to leave to get them. While we waited, I checked her oxygen levels using the little pulse oximeter that had been a staple of our lives since July 2018.
For some reason I couldn’t get a good reading. The numbers would flash briefly if it was jiggled, but it wouldn’t come up with a steady reading. I switched fingers, knowing that sometimes they just don’t read correctly. Same results. I was able to get a brief reading that showed her in the low 90s, which was about as good as it got by this point, so I wasn’t concerned about her oxygen level as much but I was still worried. It felt like something was changing.
It was then that Kurt had a question about what we’d requested. Lucy stepped out of the room to call him. I called Julienne’s mother, telling her that I thought the end was getting closer. I still couldn’t get a reading. I knew she was breathing and her heart was beating, but when I tried to get a pulse I couldn’t feel anything. I kept a stethoscope on my side of the bed, which I used to check her lungs twice a day, and hurried over to grab it. I pressed it to her wrist to hear her pulse and I couldn’t hear anything. I pressed it to her chest. The whole time I was repeating those words: I love you, I’ll always be beside you, I will never leave you, I promise.
Her heart was beating strongly still, but her breathing was different. A little harsher, a little more gasping. I listened to her heart as I held her hand and told her over and over: I love you, I’ll always be beside you, I will never leave you, I promise. I listened to her heartbeat slowly fade away, going feather-soft, then falling silent. She took a last breath. I held her hand and told her, over and over, that I love her, that I will always love her, that I will always be beside her, holding her hand, and I promise that I will never leave her, I promise, I promise, I promise.
Julienne’s parents arrived a few minutes later and I told them she was gone. I got up to let her mother take my place. I made the phone calls I needed to, to hospice and to our home funeral coordinator. Julienne had given us a roadmap of what to do when she died, and we did it, exactly as she asked. It was one of her final gifts to us, a sense of direction and action needed when all we wanted to do was curl up and die beside her.
Julienne is the best person I will ever know. She is beautiful in appearance but even more so inside, a radiant magical soul that I did not think could exist in our world. She is otherworldly. Her kindness and forgiving nature are something I’ve never seen in another person. She is the most thoughtful, spending weeks or months trying to find the perfect gift or surprise that would absolutely stun the recipient. She is brilliant, both intellectually (having studied for the bar exam after 6 months of chemo and passing it on the first try, getting a Master’s degree at the same time as attending law school) and emotionally. Her emotional intelligence is unbelievable, giving her the ability to articulate her feelings and response to them even when overwhelmed, as well as understanding why people are behaving when overcome with emotion and forgiving them for their actions. Her passion for the causes and people she believes in are unparalleled, whether it is for LGBTQ issues, combatting racism and sexism, fighting for availability of medical treatment and the affordability thereof, or for any other cause to help people get to be treated with the dignity and humanity they deserve. She is honest, describing her life with cancer boldly, openly, and unabashedly. She is a million amazing things. But there is one word that I use for her, because it is the essence of what she is.
Julienne is Magic.
Her favorite quote is from Raold Dahl: “And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.” She painted the first part on a wall in our basement. We were working on a fun little hidden nook for our children to read in under the stairs, and a secret bookcase would open to reveal the second part, one word written on each of the stairs. We would never get to have those children. Five embryos are on ice still, and they will never have a chance to be mothered by the greatest person who lived. But the magic, the magic she lived and breathed, is still here. It was impossible to know her and love her without believing in magic. I, ostensibly the cold-hearted cynical atheist, believe in magic. I’ve seen it, I’ve felt it, and I will always believe in it.
I love you, Julienne. I will always love you. I’ll always be right next to you, holding your hand. Always. I promise I will never leave you and I will always be by your side. I promise. I promise. I promise.
I love you.
Posted on August 26, 2019, in The Real and tagged Current Events, Family, Love, Sorrow. Bookmark the permalink. 25 Comments.
Oh right. You’re one of the best authors I’ve known. It’s a beautiful testimony, Alan, such a conveyance of your despair and your strength.
Thank you Chris. That is very kind. I feel about as strong as a day-old mouse right now. But thank you.
I dont remember how I found your FB/blog several years ago. I think it was a friend of a friend situation. I have been following yours and Julienne’s story all these years, and am so deeply sorry she is no longer with you in body.
Thank you for sharing your experience with the world. I lost my dad to the same cancer two years, five months, and 13 days ago. I won’t give you any words about time and grief because you’ve undoubtedly heard them all (although I do highly recommend therapy). What I want to say is thank you. Your description of the experience of Julienne’s last days was bittersweet and rings true to my own experience.
I will be thinking of you in the days to come.
Thank you. I’m lucky to have a great therapist – she was Julienne’s for the last year, so she knows our road very well. I’m sorry for your father and yourself and your family. It is pain unimaginable. And yet we have to find a way to keep putting one foot in front of the other. Thank you for sharing your story and thoughts. It’s easy to feel alone at times like this.
A quote from the Havamal, most often used at Norse pagan funerals, is one that may apply here:
the self dies likewise;
but the renown for the one who gets good fame
You have ensured Julienne will live on through your loving words and kind remembrance, and telling her stories to the world and to her loved ones. I am so indescribably sorry for your loss; losing one so close is always hard. We don’t know each other, but the well of my grief for you runs deep and wide. I don’t want to be that weird stranger giving you advice, but please take good care of yourself in the coming weeks and remember to lean on the people whom you trust to offer you help.
I’ll be thinking of you and your family. May Julienne ascend, and you all be comforted.
This is beautiful. Thank you. I will do those things you suggest. I am lucky to have people who are looking out for me. And it’s ok, we’re not strangers. Just people who hasn’t met yet.
Oh. My. God. There are no words adequate enough to respond to that beautiful tribute.
Just remember: she thought you were magic too. You are her handsome prince, her king and hero. Your time together was a beautiful, amazing gift.
It truly was. Even today I’m happier than I was before I met Julienne. I would do it all over again if I could. Even knowing how bad this hurts.
Only you could write something this beautiful about our magical daughter. We love you
I’ve been following your blog for a while now after my wife and her sister (the Miller twins) discovered your blog from your TWD writings or some such. I’ve read all your posts since that time and found them quite enjoyable.
Even from this far vantage point Julienne’s magical spirit was evident, and I am saddened that the world has lost her. This was a truly touching tribute. Thank you for sharing her story and making the world that much better. You and yours have our deepest condolences.
Thank you for reading this and commenting. I feel like the least gift I can give my wife is the passing on of her story and the incredible person she is. She joked about the fact that, since she married a writer, I could make her immortal through my words, sharing who she was with people who may have never met her so that she may not be forgotten. I wish she’d picked a better writer, but I’m grateful she chose me.
Thank you for sharing. Beautifully written and heartfelt. Although your time together was too little, what you’ve shared is inspiring and for the ages. Carol Burk Brooks, Sharon’s 1st cousin
Thank you for your very kind words. ❤️
Alan, your words are torture to read, but the love you describe for Julienne is so beautiful that I find it hard to stop. It’s amazing that in such misery, you found so much light. She sounds like she was the best. I am very sorry she is gone. I’m not sure how else to say it.
It’s hard to face life being honest with yourself, to not “hedge your bets” with an insincere belief in a god that doesn’t show up for you. I feel this way too, and I greatly admire you for your strength, your gentleness, and your goodness. Just know that you’ve got someone (I’m sure thousands of people out there) rooting for you. Carry on.
She’s the kind of woman I want to be when I grow up. Thank you for sharing your story.
This is such an incredibly kind thing to say. Thank you so much for reading and reaching out.
It’s really easy to feel alone and isolated and forgotten these days, but reading your words really does make a difference. Thank you so much.
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