Interlude: Celebrating Julienne
Tomorrow, January 11, is Julienne’s birthday.
(I’m struggling to say much beyond that. I’ve just been staring at the blinking cursor trying to figure out what words could possibly capture how that first sentence makes me feel. This week has been a real struggle, especially since I posted pictures of her last birthday party on social media a few days ago. It feels obscene to have her birthday come around when she isn’t here. This week has been harder for me to get through than any I can remember.)
31 years ago tomorrow, the world became an immeasurably better place by having Julienne in it. Her light, her love, her beauty, her magic, her joy, her passion, her strength, her brilliance of mind and spirit – all of those things – made an indelible impression on everyone she met, and even on people who did not get a chance to meet her. Her presence still has an impact that resonates with family, with friends, co-workers, acquaintances and strangers. Julienne is like no other person I have ever met, and without her the world is a different, darker world.
(I must confess that I take a grim and joyless humor in seeing how the world has descended into madness and chaos over the last months. Entire continents burn, World War III is being discussed in serious terms, the entire post-WW2 world order is preparing to overturn itself into chaos while the worst weapons humanity have ever managed to craft now become an almost inevitable occurrence with every passing day. As far as I am concerned, the heat death of the universe is a fitting consequence of the unfairness of Julienne’s illness and the theft from us all of such an incredible being. Please forgive me my blackest of black humor. She would be very cross with me over it.)
Interlude: New Year’s Eve
Julienne made New Year’s Eve special for me in a way it had never been before. Whether we celebrated it at a friend’s house, with her parents watching fireworks over the Inner Harbor, in Vienna at a palace ball, or in a club getting bottle service accompanied by a marching band, it was always special. Because of her. I’m posting pictures of those past celebrations on Instagram. I should be easy to find.
2019 had some of the best days of my life. It also had the very worst ones. I don’t want it to go, though, because 2019 will always be the last year that I got to kiss Julienne, to hold her hand, to smell her hair, to hold her and be held by her, to fall asleep next to her, to laugh and cry and dance and snuggle and play, together with her. 2020 will be the first year without her, when I know what I am missing. 2020 can eat a bag of dicks.
Julienne did another holiday song, of course. Play it tonight just after midnight. And, if you like, you can ring in the new year with us from 2016, when we were happy and in love and still facing the world together. I hope your new year is a happy and joyous one. Do things you never expected you’d do. Take risks, but not too many or too dangerous. Tell people you love them. Allow yourself to be loved, especially by your own self. Remember thou art mortal. Remember those you’ve loved and lost, or just lost contact with. Do not forget auld lang syne.
Interlude: Christmas
This isn’t one of the Love Song chapters. It’s taking me a bit to work myself up to the next one. Part of the reason is because of the time of year. I’ve talked about Christmas a bit before, so the season without Julienne is basically hell. But I wanted to post something, since it’s been a while. I don’t have much to say, but I wanted to share something special to me. Julienne’s Christmas songs.
These are the songs she recorded over the years for the holidays. If you like, listen to them and feel some of the joy she took in this time of year. I hope you like them.
I also hope that whatever holiday is important to you is very special and full of love and peace and joy. I love you. *finger guns*
Der Tag
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.
Xmas otter break.
***
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.
The Hospital, Part Three: The C Word (the Bad One)
This is the sixteenth chapter of Love Song by Julienne (ft Cancer). The other parts are listed below.
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
Chapter 12 – Graduation (or, Freeeeddddoooommmm)
Chapter 13 – The Joy Before the Storm
Chapter 14 – The Hospital, Part One
Chapter 15 – The Hospital, Part Two: Farts Save Lives
(No, I don’t know why the spacing is off above. No, I don’t know how to fix it. No, I don’t care. Much.)
Julienne and I had three long-running arguments throughout the entirety of our relationship from which neither one of us was willing to back down. They were, in ascending order of importance, which one of us was the luckier one to have the other, which of us was the greatest, and, the big one, which one of us loved the other more. We had the arguments through text and in person, by ourselves and in company, for as short as one or two back-and-forths to a hotly contested battle that would last an hour. We each felt very strongly that we ourselves were luckier to have found someone so incredible and who loved them so much. We each knew, beyond a shadow of a question of a doubt, that the other was the greatest person of all time. And we especially each knew that it was impossible for anyone to love anyone else more than the love we felt for the other. It was a fun game for us, trying to come up with ever-more clever (and not-so-clever) arguments (see, if you love me more, then you truly are the greatest person ever, and therefore I am the luckiest).
It was sweet of her to try, but everyone knows that a) I was the luckiest and b) she was the greatest and c) I think we loved each other as much as is possible for one person to love their partner, so that one was a tie.
The Hospital, Part Two: Farts Save Lives
This is the fifteenth chapter of Love Song by Julienne (ft Cancer). The other parts are listed below.
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
Chapter 12 – Graduation (or, Freeeeddddoooommmm)
Chapter 13 – The Joy Before the Storm
Chapter 14 – The Hospital, Part One
The first time I went back to our house after Julienne left us, I was still in a sort of Zen-like state. I’d been in that oddly calm and peaceful place since about an hour after her death and all the way through her funeral, for the most part. When I wept, it was gentle and quiet, the tears just running down my face in streams as I looked at her face, so beautiful in repose. I missed her strongly, and with everything I had, but right up until the funeral I could still hold her hand and touch her hair and kiss her cheek. I give her credit for my calm state, because it allowed me to give comfort to others in the way I know she would have done if she could. That state lasted until I walked in the front door of our home.
Cancer Feelings: Gratitude
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…
View original post 2,478 more words
The Hospital, Part One
This is the fourteenth chapter of Love Song by Julienne (ft Cancer). The other ones are listed below.
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
Chapter 12 – Graduation (or, Freeeeddddoooommmm)
Chapter 13 – The Joy Before the Storm
Here we are. OK.
I start of a lot of these with these semi-parenthetical asides about how hard these are to do or start – sorry about that. Here’s another one. Sorry about that.
A lot of the time… well, most of the time, OK, I guess every time, I’m not exactly sure how to start writing these. I have things I know I want to talk about, but the way they are written is a surprise to me every time. Before I write them, I’ll read our old messages and look through pictures from the time to make sure I’m not forgetting anything. Then I just open up Word, start typing everything in a stream-consciousness style, take breaks when I get super emotional, then come back and continue. Then I read over it once for typos and clarity (such as it is), add pictures (sometimes I know which ones I want to use, sometimes they come to me when I’m typing), and schedule it (usually for 2 pm for some reason). That’s it.
I don’t ever know what’s going to come out. The Julienne post that started it all was like that. It went in a direction I never would have consciously chosen. I reread it last week and it’s so disjointed and confusingly written to me now, which makes sense because when I wrote it I was both disjointed and confused, not to mention distraught, bereaved, and broken. It hasn’t changed much since.
I don’t even know why I’m writing this, other than the fact it’s what my brain wants to say for some stupid reason. I’ll leave it in, even though any half-competent editor would remove it (although I lie to myself that a fully-competent editor would leave it in because it’s emotionally true, and half-competent editors are all hard at work at the latest celebrity ghost-written nonsense anyway, and it’s a lie that feels good to me so I’ll keep whispering it to myself). I think I’m writing this because what I’m going to try to write about makes me feel like a sculptor armed with a hammer and chisel staring at the cliffs of Dover and wondering how the fuck he’s going to carve out the thing he needs to without burying himself in an avalanche.
But I guess it’s like eating an elephant. One small bite at a time.
Fuck. OK.
***
In the days before the 17th of July in 2015, Julienne had been busy with more than engagement party planning and crafts and bar study. She was also wrestling with something very heavy and difficult. Something that bothered her was becoming very real and inching ever closer and she didn’t know what to do about it.
Leaving her family and moving to California.
Of course it was for her dream job, the thing she’d been actively planning her life around for years after she accepted that she would never be able to be a stage performer due to stage fright. It was why Julienne had gone to law school and gotten her double major. It was the reason for her internship. Being an agent for classical composers was the thing she burned to do. And in order to do it, she needed to go to L.A. It was the obvious choice.
Except.
The Joy Before the Storm
This is the thirteenth chapter of Love Song by Julienne (ft Cancer). The other ones are listed below.
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
Chapter 12 – Graduation (or, Freeeeddddoooommmm)
I just want to begin by saying that this one has been a real challenge to start. Revisiting this time, a two-month span that felt like the beginning of something amazing and turned out to be just a pause before the start of the end, has been a real challenge. I think I’ve been holding off on writing it because this is the last one before the Rest Of It, when an uninvited guest would crash into our lives and slowly but relentlessly snuff out everything but the memories and the could-have-beens. We had about 68 days living together before it all changed. As of today, as I write this, she’s been gone 96 [and now that I’m finishing it, it’s been 99]. It’s all so incomprehensible to me.
***
On May 17th, 2015, Julienne, Lewis, and I pulled into the parking lot of what was finally, truly our apartment complex. She was free of Miami, of law school, of her master’s program, and now she could take a nice break from all of that.
Lewis really made himself at home.
Just kidding. She had three days before her bar exam prep courses started.
Now, as a non-lawyer person (although when I first went to college, fifteen years before I actually graduated, I was pre-law and had every intention of becoming an attorney and politician, which is kind of mind-boggling to me now, honestly), I had only the vaguest notion of what the bar exam was like. I had done some prep for the CPA exam back before I realized that I wasn’t going to be allowed to take it (for needlessly complicated reasons that literally no one cares about or craves an explanation), and it was challenging, since like most students I forgot just about everything the moment I took my last final. So, in my mind, it was kind of like that. A lot of questions about things that you learned in school, to make sure you have a basic grasp of the job you’re looking to practice.
In fact, it is not like that.
(Post) Cancer (Caregiver) Feelings: Grief, Part 1
This is part of the series of posts that Julienne began back when she was diagnosed. They’re on Julienne’s blog and linked below. The ones I have done are below as well.
Cancer (Caregiver) Feelings: Yin and Yang
(Post) Cancer (Caregiver) Feelings: Hope
Strap in. This isn’t pretty.
Grief.
It’s a little word that packs a lot into it. Loss. Sorrow. Pain, both physical and emotional. Longing. Loneliness. Honestly, Grief is just too big for a blog post, which is why I added the Part 1 part to the title. It’s sort of a joke, since I don’t plan on doing a second part, but it’s not a funny one because there is just too much to say about grief, even if I just focus on my own. So what’s the point, you could rightfully ask. I don’t know is my truthful answer. I guess I need to say some things about grief rather than have them rattling around my head like I rattle aimlessly around my empty house.
Here’s the fun thing about grief, which isn’t fun at all, it’s the tragedy of grief – here’s the tragic thing about grief: It’s different for everyone. That’s essentially the first thing you read or hear in any book or discussion about the process of grief. It’s different for everyone. The moment when that sunk in for me, days after I lost the light of the world and the main reason I woke up every day happy to be alive, I came to one very stark realization about what those words actually mean.
I am so fucked.
Everyone in grief is just plain fucked. Because it’s different for everyone means there is no template, no procedure, no standard of care that works. There are a lot of commonalities, but no overarching principles or guidelines to say this will help you. “Therapy”, of course, is helpful, but that’s like saying “medicine” is helpful to the sick. As an abstraction, they are both true. But what form of therapy is the right kind? What approach is best? What should the focus be? Well, it’s different for everyone.
Winter in Derenemyn 