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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.

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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.

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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.

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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.)

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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.)

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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.

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.

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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.

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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.

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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.

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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.

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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.

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(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.

Anger

Fear

Gratitude

Isolation

The Dark Side

Parting Wisdom

Nervous

Round 2

Positivity

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.

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