loss

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.

July 16, 2024

Saga Of A Completed Manuscript

I’m sure most, if not all, have gotten tired of reading the phrase/sentiment “I miss my husband” in almost every one of my posts since his passing. At least, I would be if I were on the other end. But I’m also a heartless dick. If you are not exhausted with it, continue on.

On Friday I finished editing my novel. THE novel I have been editing and honing into a polished gem ever since I completed my first draft on my husband’s birthday in 2009. For those of you who can’t do some quick math, that is nearly 15 years working on this bitch. I have started and stopped countless times, either because life got in the way or I got in my way. The only credit I can lend to these individual endeavors is that whenever I would pick it back up, with all the enthusiasm of a teen girl at her fave artists concert, I would start in a new place. The logic being that maybe working on another piece wouldn’t wear me out or overwhelm me as it had before. Ultimately I would give up all over again from the aforementioned reasons.

At one point around 2012-2014 I decided that I was going to give up on being a writer. After each failure it wore away at my self-esteem to the point that this remained the only logical step. In addition it was just destroying my self-worth. Because I wasn’t hitting this high bar I set for myself, I thought that I was less than trash. To stop it, I gave up on that dream. I couldn’t get my shit together. Every time I tried, I failed.

Yet time does wonderful things for my ADHD brain. I tend to forget. Granted, I didn’t forget that I had given up on my desire to be a published author, I just decided that if I were to write it would be for me. To have fun! Which I did. I would enter the NYC Midnight contests for short stories or their flash fiction challenges. These little exercises tested my abilities and showed me that I may not be “THE BEST” I was still good. Published good? Maybe not. But I still had the talent.

For whatever reason I returned to my work in progress (WIP) a few years ago, right around when Charlie was diagnosed. I don’t remember the reason. All I know is that while on a road trip with my polycule I forced them to listen to my WIP. As my bf and I took turns reading it, I was astounded how much of it was already complete. Had I really done that much, I kept asking myself. Clearly I had. It was all there in black and white. Just a few short minutes before we got home I finished reading it to them. I felt this sense of pride. It was good. There were still inconsistencies and a couple chapters that needed a lot of work, but overall it was nearly there. I could see the finish line, however fuzzy it may have been.

When we finally got home, my husband said the one thing that, out of all of our wonderful memories of us together, this one shined the brightest. My husband looked up at me and said “Your story is really good, dear.” It came from nowhere, unprompted, and nearly knocked me off my feet. I said “Thank you” not sure if he was being nice for nice sake (he was DYING afterall…) and he reaffirmed “I mean that. You need to finish it.”

On July 12th, 2024 (12/7 the reverse of when I finished my first draft on 7/12) I finally finished editing my manuscript. I was stunned. I couldn’t believe it. I was elated and in disbelief simultaneously. I have dedicated so much of my identity into this ONE story that it was weird that it no longer existed in it’s original form. Immediately I wanted to call and tell my husband. Then… it all set in. Instead I told my BF and then my brother-husband. They were proud of me, but it didn’t fill the void I craved. So, I shared it on all my socials to lackluster response. My own high expectations ruining it of course.

To “celebrate” my achievement, I decided to leave work early and pick up my pre-orders from the Star Wars Unlimited TCG. On my way… I hit my husbands speed-dial on my car and called him. His familiar voice answered and I immediately cried. The line beeped and I barely got out “Hey punkin, I finished editing my book.” I was a mess the entire way to the store. Thank Taylor that it’s so hot, at least that gave some excuse to why my face was wet and red.

Now, I am left with the next step: writing a query letter. It’s terrifying and exhilarating all at once.

At family dinner on Sunday, I told my in-laws and they asked what was next. I told them the auto response (as shown above) and then told them my dream scenario. I said, that if I did magically get it published I would want, more than anything, a blurb on it with my husbands quote. “It’s really good, dear.”

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.