May 16, 2024

A Eulogy to My Husband

It’s strange. I have been writing this in my head ever since we got Charlie’s diagnosis but waited until the last minute to write it like I always do. It didn’t hit me until yesterday that this wasn’t fueled by my ADHD as usual, this was because once I do it it is real. It’s most likely the reason why even though I’ve spent the last four years thinking about it I never put it in writing. Now, I wasn’t composing it mentally because I was looking forward to it. I was doing it because I wanted to make sure I got this right. I wanted it to be a perfect encapsulation of Charlie, without making it about me. Even now I can hear charlie saying, with his mischievous smile, “oh, you’re going to make it about you. You can’t help yourself.”

To that I say, charlie I can’t write about you without including my own experiences.

And I can hear his response, “Yeah, yeah. Excuses.”

After charlie was diagnosed, the only thing I wanted was more time with him. At that point we had only been together 16 years and I wanted more than anything to make it to 20. That way he would have been in my life longer than he wasn’t. And I got my wish.

Charlie’s and my’s meeting was an accident. Back in the AOL days he instant messaged me thinking I was his friend “Nick.” This friend, who I have still never met, and I had had similar screen names. The first thing he ever said to me was “yeah, Diego and I are still together.” I replied “that’s great” and continued the conversation as though I knew him and what he was talking about. Eventually I asked him “who are you” and he explained the mistake.

Charlie’s and my relationship began with communication and never stopped. It was what shaped and molded everything. He had this uncanny ability of cutting directly through the bull shit to bring out what someone was really feeling. Which wasn’t fun for someone who, at the time, didn’t know anything about themselves. Charlie kept asking questions to not only figure someone out for himself, but so the other person could see it too. His constant role of “devil’s advocate” forced me to really examine my own beliefs and see another person’s point of view. I hated it. Nothing gave him more joy. One of my favorite memories was my mom telling me, with the biggest smile, “man he really knows how to push your buttons.”

His joy and positivity was infectious for me. Much like it was an achievement with my dad, getting him to laugh was always my favorite thing. The one thing that worked, without fail, was making myself the butt of the joke. Nothing made him laugh more. Well, maybe our dark sense of humor when it came to the reality of his disease. Even in something so serious we could see the absurdity of life and in that found joy to keep us going. While the jokes were not always well received it was his attempt to stay positive.

His positivity also extended to other people or situations. He usually saw the best in someone and even if they failed had the belief that they could and would change. He very rarely wrote anyone off. And in the rare instances that he did he would always backtrack and see them in a new light.

Charlie was always concerned about the joy of others. He was a fixer emotionally and physically. He would do anything that someone asked (even if he didn’t know how) to make that person’s life better. However momentary it may have been, or at the cost of his own joy. He may not have wanted to hang his mother’s shelves, curtains, or put together a BBQ but he did it because he wanted her to know that someone was there for her. To make her happy. It’s also the reason why his gifts were always lavish. He had a philosophy that gifts should be something that the person could not or would not do for themselves. Which made giving him gifts un-fun because I had no money and he had no reaction to sentimental trinkets.  I have since learned that it is a shared family trait with his sister. Every year I had to step up my game to find something that would be “extravagant” but within my budget. That’s near impossible to do. So, when I broke down and bought him a high end Kitchen Aid mixer I went into debt to do it. And for each subsequent gift after.

Charlie was simultaneously worried about finances but also not concerned about money. The moment he ever got any excess cash he would make some ridiculous purchase or take us both on some off-the-cuff trip, spur of the moment. At the time I was bothered by his (and let’s face it my) inability to save for something bigger. Spending whatever we got when we got it didn’t benefit us. Though with hindsight I’m glad we never did, because it absolutely served us. It gave us experiences that I will not forget. We got to live life instead of planning for it under the misguided belief that we could do it tomorrow. That was the best lesson Charlie taught me, without knowing he was doing it at the time.

I am genuinely disappointed that he wasn’t a teacher for longer. Or that his coworkers couldn’t see the potential and ability he had in being an instructor. He was always eager to show someone how to do something. Which he most likely learned how to do on his own. He was self taught and not one for the finer details. But he was eager to show me how to do something, even if I ultimately got super bitchy about it because what we both failed to understand that we had two very different ways of explaining something. So we would have to sit back and listen to what the other was trying to say to complete our task.

Being an unconventional teacher is what charlie was for me. With everything that made him up it culminated into being a guide on how to be a better person and how to live a good life. One where the only regret is that you don’t have enough time to keep going. Which, to me, is the better side of “I wish I had more time to do the things I never did.” I will miss him more than I could ever put into words, because he was truly my other half. He had the biggest hand at making me who I am today through all our trials and tribulations, failures and successes.

So, I guess you were right, Charlie.  I did make this about me.  But only because you’re invariably tied with who I am and who I have become. 

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.