dying

May 2, 2024

Memories and Missed Opportunities

Last night was strange…

I went to bed and in the midst of my mumbling thoughts I started to think about the most random of memories of my husband. Little things, like when I would kiss his neck or the way he would tap his glass as he would take a drink. Then in morphed into thinking of our final day together.

He woke up and was madly messaging all of the people he’s been corresponding with these past few months. Then when he finally got up we watched The Birdcage. For the life of me I can’t even remember what else we watched. I had wanted us to bookend everything with a re-watch of Philadelphia but from behind his mask he firmly said no.

Once it got close to time, we retired to the bedroom and set up chairs all around the bed. We watched an episode of Taskmaster until the nurse got there. She wrote out the instructions to administer the drugs and split. (Which was not the plan by the way, but that is a blog post for another time.)

At 5:30 we took off his mask and waited. Almost exactly 6 hours later he was gone.

I replayed this over and over last night… Thinking of him lying in bed afterwards, there but not. He looked so peaceful. I would go in there and check on him, brush his hair. I could hear his voice screaming in my head “Josh, that is so weird. That’s a dead body. Gross.”

These memories made me miss him so much. I started to cry but stopped myself because I didn’t want to wake up Tony.

Last night I dreamed of Charlie and I adopting a child. We were asking my parents questions about what we would need and they were excited to meet their grandchild. It was such a lovely dream that I didn’t want to wake up. I got to have my family back for a very brief moment of time.

Charlie had said one time that he would be willing to have kids if we adopted. At the time I didn’t want that, I’d rather have a biological child of my own, but I figured if he was willing to meet me halfway I should too. Shortly after his tune changed and he didn’t want kids. This would be the pattern over the course of our relationship, mostly because we had yet to find our groove. We didn’t know what made us work and how to accommodate our shortcomings. By the time we had figured them out and became a stronger couple, we were in the midst of having an open relationship and he wouldn’t want to bring a child into that. Which is a fair assessment.

Then he was diagnosed with ALS.

In hindsight I am glad we never brought children into our relationship. It would have made everything exceptionally difficult, especially once I had to raise them and take care of Charlie all while trying to process my and our child’s grief. Maddening.

I think Charlie would have been an amazing dad. He was so patient and kind. They also would have been fucking spoiled. I know it. Between him and my parents… the kid would have never wanted for anything.

The thought of adopting now just breaks my heart. They would never get to know one of the greatest people of my life. Charlie would be some myth or legend, yet the reality would be so much more.

I’m glad I at least got to feel it in a dream.

April 30, 2024

Your Husband is on the Dresser

I never expected to learn things about myself in the absence of my husband. I thought I had a basic grasp of my idiosyncrasies and character flaws. As I have since discovered, I do not. Turns out that I am still very much afraid of the dark and what lurks within it’s depths. It is either the thought, or the truth, that entities lay just beyond my field of vision that causes me immense amounts of fear. I’m kept up late wondering what the energy I am feeling could be. And it’s always things just out of sight.

When my husband was around I never thought of them. They rarely crossed my mind, unless I had some sort of dream or had thought it was a good idea to watch a scary movie before bed. (Y’know the only time it’s appropriate to do so?) If I had had any fear drifting to sleep or waking with panic, he was always there to calm me. Every time. I always felt safe with him there. His presence made me stronger, even when ALS had made him completely immobile. I don’t know why.

There were times, when he had a job out of town, that I got a glimpse of this “Josh.” I would wake up and look right at the open door. (Yeah, I sleep with the door open by the way.) I could sense or feel something watching me. Panic would grip my body as I tried to tell myself that I was alright, there was nothing there. I’d reach out to my husband and text him, even though I knew he was asleep. Just knowing he was there, somewhere, made me braver.

Now, I have nothing. Well… Almost nothing. Yesterday I retrieved his remains from the funeral home and placed them in the bedroom. His ashes now rest on the dresser across from where I sleep. Oh, and a portion in the living room with full view of the TV, just in case.

Tony darkly joked on who had what part of him. I said, he probably had a leg and the blue, tropical themed shorts he was wearing. Maybe an eye too. A finger. God, we’re fucked up.

We are people who find humor in grief. It’s our way of processing all of the ache that comes with loss. We fill it with a mutated sense of “joy.” For us it’s also a way to honor Charlie. He had a darker sense of humor than all of us. He had to, to process all of what had been given to him.

It’s nice “having him home.” Also a little weird, knowing that my husband’s charred remains are just on the opposite side of the room in a rough wood box. As he would have said “it’s creepy.” Partially, but I’m in that weird grief state of mind where I will take anything I can get to be a band-aid for the emotional ache. In grief we do the weirdest things to process it. I’ve been wearing his deodorant, clothes, and sleeping where he passed. That last one would have given him the biggest “ick.” For someone who was so comfortable with his own condition he was sure hung-up on the small details.

“Why are you sleeping there? That is where someone died? That’s creepy,” he would have said.

“It’s not like you’re still there, Charlie,” I would have responded.

I wonder if having his ashes made it even more real… He is really gone.

April 25, 2024

Trauma Glitches

Taylor A. Swift*! My memory is truly shit. Whole conversations or random pieces of information have failed to back up in my memory as if they never existed. The only trail that these moments occurred is proof in text. Thank Taylor* for that. Otherwise I would have no recollection. I would ask “what is that?!” but I already know what it is. It’s grief. It is also partially due to the fact that I am bandaging my grief in light substance abuse.

I’m not someone who does any sort of hard drug. My previous vices were alcoholism and prescription pills that did not have my name on the bottle. I didn’t think the second was an issue until my husband asked me how I slept so “soundly.”

“I could not wake you up. Why?” he had asked.

I had to then explain that one of my co-workers had given me her extra muscle relaxers, to which I then held captive in my sock drawer. As the explanation left my mouth I already knew that was a problem. Normal people don’t do things like that. We promptly discarded them (safely) after our conversation. So, whenever Charlie or I were prescribed heavy duty meds they were made aware. After that, they weren’t a problem.

Prior to meeting my husband I quickly spiraled into an alcoholic. At the time it didn’t make sense why, but after my “Soundtrack of My Life” project it became apparent that I had gone through some heavy-duty trauma that I neglected to address. Instead I buried it and took it onto the next relationship that ultimately added to the stockpile of depression. Therefore the only conclusion my 17 year old mind concluded was a “brilliant plan” was to drink. And I did, until my husband came along and said what I was doing was illegal and was going to ruin my life. He said he would not drink if I too stopped. We would do it together. It was easier for him than me, however I still got sober and stayed that way until somewhere around my 20th birthday. Then I drank a toxic concoction at a Halloween Party which made me utterly sick that I ended up puking all over Charlie’s car.

Liquor and I have had a bad relationship from the start. I want to desperately get drunk, and forget, and it likes to take it’s time until I am so overwhelmed that I am hammered to the point I black out.

I did that the other evening.

It’s amazing how quickly one falls into old destructive patterns. It resulted in making very unwise and dangerous decisions that, in sobriety, I could hear Charlie’s voice at the back of my mind, clear as day, say: that I need to set limits or I will kill myself. That would absolutely go against his wishes that I “live a long and happy life.”

The issue though is I ache. Even with antidepressants I have a constant smoldering pile of embers in the pit of my chest, burning for my husband. He has been with me for near 21 years of my life… him not being here is jarring, no matter how hard I attempt to suppress that truth.

I am completely out of my comfort zone. I have to deal with these feelings uninhibited or “assisted” but I genuinely don’t know how. Nor will my mind let me. It is truly a sight to behold when I bury my hurt subconsciously. It’s like a seasoned magician performing mundane slight of hand.

The primary reason I want to deal is because I can’t live with my life taking moments of my life and erasing them. I pride myself on my memory and not being able to do that will cause me more stress than not addressing the hurt I have.

*One of my favorite stand-up bits was George Carlin’s piece about praying to Joe Pesci. I loved it so much that I adopted it into my life with using “Albus Dumbledore” in the place of other fantastical beings. This was before we learned that Row-Row is missing an oar from her boat. So I have changed faiths and now pray to Tay-Tay.

April 19, 2024

One Week…

It’s been a week since my husband passed and it still doesn’t feel real. I act as if he is just in the other room or on some trip. Any moment he’ll be back or I’ll get a text from him and everything will be just as it has been these past 3 years.

Something I have discovered about myself is my “reaction to grief.” In writing I can be as vulnerable as I want to be because it’s a blank page or an audience that may or may not be there. I don’t have to worry about whether I sound too calm or too sad and I never risk making someone uncomfortable. Which is something I can’t do in person. When I’m around other people I put my feelings into a steel vault buried deep, deep within my chest. Only under the influence am I able to spin the dial and let them out for others to see in real time. Otherwise, without these explicit parameters can I share how I truly feel.

This past week I have been constantly around someone. Hardly do I get a moment to myself. Which is by design and is not a complaint, by the way. At the surface I’ve done it because I know that Charlie would have wanted me to be there for Tony, his mom, sister, and niece. Especially his mom. So I honor him by doing that, at my own “detriment.” I hide everything I’m feeling to be strong for those around me. Below this truth, lies the pernicious reality that I don’t want to face my emotions. I would rather pretend I’m strong. The unfortunate part is once they’re buried I neglect to ever pull them out again, and they grow into a thorny, viny weed to choke my joy. The one who would do everything to pull them out of me is the one I grieve for in his absence.

This grief is so complicated even without me hiding it.

The other day my mother-in-law asked me if I was “relieved.” This is a part of the entire process that I have tried so hard not to recognize because the very notion fills me with insurmountable guilt… I am.

I’m relieved that he isn’t suffering, that wherever he is he gets to begin again; and I am for myself. The 24 hour requirement for caring is done. No longer will I get requests to move his hands, give him a drink, help him use the bathroom, bathe him, give him his pills, or move him from one room to the next with all the accessories that follow suit. I can finally sit down and just exist without worrying that I will be asked to do something else. And that is where I feel like the biggest piece of shit. How can/could I feel that way when the person I love is gone?

Now I am left attempting to process everything with all of my bizarre idiosyncrasies, the character flaws I’ve developed to cope with the stresses of my life. I’m in therapy but again when I’m talking to someone I am “indifferent.” I reveal nothing because that would be showing weakness. If they knew how I truly felt they would think of me as a burden, or worse they would use my secrets to betray me. (Wow I sound psychotic.)

The other night I fell deep into familiar destructive habits. It was the same shit I did before I ever met my husband, when (then too) I was not facing my trauma. I made some very bad, deadly choices that in the clarity of sobriety I knew my husband would be utterly upset with me. I could hear him in my head, as loud as if he was standing in front of me, that I need to stop doing these things before they get out of control.

For once in our nearly 21 years together I listened with absolute determination.