dying

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.

April 8, 2024

April 12th

It’s strange. One would think that at the start of the worst week of my life I would have something to say. Something to impart on how I am feeling… But I have nothing. Genuinely nothing. I feel numb. As if I have hit pause on my entire body. I imagine if I were to pursue some answer it would say that it is some sort of trauma safety response… However I don’t have the time or the energy to do it. And in the end… what would this answer serve?

For some context, this Friday (April 12th) my husband will go to bed without his breathing mask. It is this mask that has kept him around as long as he has, and without it he will most likely pass way in his sleep. We have spoken with his hospice nurses and they will be there to help keep him comfortable as he “transitions” into the next stage of his existence.

I have known that this day was coming since he was diagnosed with ALS. It’s not like that this was sprung upon me out of the blue. I knew. I have known. It’s just weird to know the exact day. Prior to this I would wake up every morning and see if he was still here, or whenever he took a nap. I have been convinced for sometime that he would go while we slept. Primarily because that was what the doctors had told us was most likely to occur, and even before he had been diagnosed I would wake up in a panic throughout the night and see if he was still breathing. It’s weird. It was as if I knew.

All I want to do is open up my heart and pour out all I feel… I am craving some semblance of vulnerability but I have none. Is this shock? Maybe it is denial, until I am there to see and feel the reality.

For so long I have lived with the “not there yet” attitude. It was the title to our weird little video blogs we would do on our trips. It was literally the words I would say to myself in the early days of diagnosis, when my mind would spiral into all of the gory/overwhelming possibilities. To calm myself I would repeat “we’re not there yet” so I could focus on where we were in all of this. Well… we’re here.

The thing that is keeping me together is what Charlie said the other day, when I asked how he was feeling: I’m excited to see what happens next.