dying

January 16, 2025

Missing Peace

My husband was entirely too considerate. He would see/sense the frustration on my face while I was helping him and would always apologize. Nothing specific, just for being a “burden.” Hearing it would break my heart, because it wasn’t the helping him with (literally) everything, it was the impending loss of him that frustrated me. I equated watching/caring for him like dragging a sharp blade slowly across my skin. The image doesn’t encapsulate everything I wanted. It just brings to mind the torture of it all, and the unknown survival.

What I knew then, that I am very, very well aware of now, is that I dreaded his absence. Just thinking of him not being around caused me so much panic that I would begin to hyperventilate.

The last two days I have missed him terribly. We are entering a very scary time. My rock and the one who knew what to say to make me feel better, is gone. I’m left to handle my emotions alone, however chaotic and confusing they will inevitably be. There are those around me who will and do help. They are just not to the level my husband achieved. Maybe it is because he had 21 years to perfect his process.

In the beginning, he didn’t know how to handle me. I am a live wire. It takes a certain level of finesse to comprehend why I do the things I do or why I feel a particular way. In those early days he sure as shit knew how to push my buttons. Ones he would deliberately press to listen to the cacophony of noises that would erupt from me. He watched my explosion with glee until it would inevitably take a dark turn and he’d have to deal with the repercussions of having done it. Only through his “practice” did he learn.

More than anything I want him here with me. I miss him terribly. I finally comprehend why people leave this mortal coil after losing the ones they love. They’re chasing the belief that they will see them again. That it will be instantaneous. That the person you crave more than air will be waiting on the other side, hand open to welcome you there. Unfortunately, it’s all fantasy. A human mind trying to rationalize a very spiritual event.

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.