(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.

I have an excellent therapist. She worked with Julienne after we were told her prognosis in July 2018. Our therapist specializes in grief, and she was able to get Jules in a place mentally where she could accept what was coming as best as a person can. Together, they did tremendous work. Our therapist asked the questions that Julienne needed to answer to find what she needed, and it made a huge difference. I know see her every week. It’s a comfort to have the same therapist that Julienne had, because I don’t need to tell her how amazing my wife was, or what we went through, or anything like that. We could hit the ground running.

But here we hit the it’s different for everyone roadblock. Or maybe, road construction instead of road block. Because I soon learned, in addition to IDFE (it’s different for everyone in acronym form, which I’m saving time by typing instead of the full sentence, then turning around and squandering that time by writing this parenthetical aside because I am an addict and my drug of choice is parenthetical asides), that grief is a journey that is, by necessity, taken alone. Even when grieving in the company of others over the same person or situation, it is still a solitary activity. Why? Because IDFE.

For me (and I can only speak for me. Other’s experiences will be different, because – you guessed it – it’s different for everyone), it has made my life an even more draining and lonely experience than it already would have been just by losing Julienne. It’s lonely and alienating knowing that literally no one is going through what you’re going through – at least, their journey is not the same. There are many, many people grieving the loss of Julienne, but I was her only husband. The two people who I know are going through as brutal and painful experience as myself are grieving something that is totally different. I can only glimpse part of their grief because I can’t understand what it’s like to lose a child, and they can only see a part of mine because they do not know what it’s like to lose a spouse.

Every different circumstance makes the IDFE phenomenon. As a part of belonging to the cancer community, both unfortunately and fortunately, I know a lot of people in very similar positions to me, caregivers who lost their spouse. There is a lot that we have in common, obviously, but we’re still each isolated in our grief, because every difference makes a difference. Some of those caregivers have children with their lost spouse. Some of us did not get the chance. Some were married a long time, others much less. It all flavors the individual grief. We understand each other as best as two people can understand someone else’s grief, but I still don’t really know what they are going through, and they don’t really know my own.

It makes for a lonely life. Especially when the one person who would understand, who would feel something almost exactly the same way I do, is the person I’m mourning. Julienne would get it. She’d know exactly how I feel. And that’s a real knife in the heart that is already stabbed through and through and through; knowing that the only person who gets it, who could truly help, is the person that I can never, ever see again, can never talk to about it, can never hold me and comfort me and tell me it’ll be ok, like we did with each other for years.

That loneliness leads to a lot of darkness. I’ve been in very dark places for a lot of my life, so I’m no stranger to them, but this is, obviously, much, much worse.

One of the dark places it leads me to is an intense feeling of jealousy. I am so fucking envious of a lot of people right now. People who haven’t experienced a loss like this. People who got to have kids with their spouse. People who get to have the fucking luxury of not thinking about this nearly every second of every day because they have their own lives and jobs and families and don’t live in a place where literally every fucking corner is a reminder of the person that is not there but fucking should be. I find myself feeling these jealous bitter feelings and it just makes me feel even more alone that I am just with the loss of my companion.

The kids thing is a tough one. It was Julienne’s biggest source of grief while she was alive. I am still trying to figure out how to present the Whole Kids Thing in our love story. Children and our hopes for them are a running theme throughout the time we were together, until the moment we were told that she had, at best, 13 months to live. We tried very hard to have them and went through such a brutal slow-bleed torture throughout it, as hope after hope were, one-by-one, over a series of years, slowly killed in front of us, by fate and, sometimes, by the casual cruel heartlessness of individuals, companies, and society. I don’t know whether to let it play out chronologically, so I get to suffer through those feelings as I remember them in real-time, or write it all in one intercalary chapter to contain all the heart-mauling pain and powerlessness and howling rage that particular part of the story has nested inside my heart and made every fucking day a little worse than it already was,

I don’t know. Sadly, I’ll soon have to figure it out.

During one of my recent therapy sessions, I asked a question that I’d known the answer to for a while but hadn’t quite managed to confirm. What I asked was what is the endgame here? Am I supposed to essentially distract myself to one degree or another until finally one day it doesn’t hurt as much and I can go on with my life not thinking as much about it? Is that the goal? I knew the answer, and I’m glad my therapist is honest with me, even when the truth can hurt.

The answer is yes, that’s it. That’s what can be done about grief.

See, society cares about one thing. Are you getting up and being productive? Are you taking care of yourself? Can you go back to work to pay for the house and credit card bills and loans and food and everything else? The answer had better be yes to all of those things, pretty fucking quick. I’m lucky that I’d worked as much as possible when I took care of Julienne. It meant that I had 5 PTO days available to go along with the THREE FUCKING PAID DAYS you can expect to receive when a close family member passes away (now, my employer has been fantastic throughout this process, and I could have probably taken whatever time I needed and they would have taken care of me, but that’s the fucking exception in our society, not the standard).

Grief has broken me. I have no idea how much glue and duct tape will manage to patch me up to keep me moving, if it can do it at all. I’m not just lonely. I’m alone, no matter who is there. Grief makes sure of that.

Yesterday, I went to the grocery store after work to pick up flowers and something to eat for dinner. I saw some tortillas on an end cap and picked up a pack. I love tacos, and I thought that I could make a big batch of them for dinners and lunches. A minute later, as I’m picking out her flowers, I can’t do it anymore. Grocery shopping is a very hard thing for me to do. Not just because Julienne and I did it together so much and loved it. I went to the store after work alone quite often.

The difference is that, in all of those trips, I was picking up things for us. I bought things we might like for dinner, or things she requested, or surprises for her, little lame-ass shit like a dumb fucking ball or pack of fucking candy that she liked because I loved to see her pleased by things. And as I’m there in the store it just reinforces that everything I’m getting is just for me, because I have no one else. It’s an overwhelming reminder of how fucking alone I am, and I generally have about 5 minutes in the store before I start crying, and society has taught me that a grown man crying in public, silently letting tears run down his dumb fucking face, is a thing that you make sure you ignore the living fuck out of because no one wants to deal with that shit, and who can blame them for feeling that way? Not me.

Last night, the thought of spending the time it would take to gather all of the ingredients to make tacos was way too fucking much for me to handle. I picked up a giant pack of frozen chicken tenders on the way to the checkout instead. I bought the fucking tortillas because I didn’t want to spend the time putting them back. I just wanted to go, to get the fuck out, and I got to go through the questioning that apparently must be accompanied with the situation when an adult male is buying flowers. Is this for a special occasion? I was asked, putting me into the fucking position of having to come up with an answer that won’t make me burst into tears as I fucking stand there trying to get the fuck out of this place, and telling a fucking stranger that they’re for her grave is met with a chuckle and a have a good night because nobody even fucking bothers to listen to the fucking answers to the fucking questions they shouldn’t fucking ask. Then I get to cry in my car as I drive to an empty house because I. Am. Fucking. Alone.

I’m not OK. I see no future where I will be. Life is a grim fucking slog until you reach the end of it. Sometimes there are big, beautiful bright spots in it. I had a good five years with the most beautiful bright spot that ever lived, and now the darkness is even darker.

And still

and fucking still

I’d do it all over again. I’m grateful for every second of every day I had with Julienne. I wouldn’t trade any of it – any of it – for the world. I’m happier, even now, than I was before I met my Tinuviel, my sweet pea, my baby, the love of my life, the best person who ever was, my world, my universe. My heart. My love. My Julienne.

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About Alan Edwards

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

Posted on November 7, 2019, in The Real and tagged , , . Bookmark the permalink. 2 Comments.

  1. I’m so sorry.

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