ALS

October 13, 2024

Six Months

I failed. I had wanted to write this post on the actual day of, instead I got distracted with other things to where I eventually found myself drunk and just couldn’t bring myself to write. How the greats could drink and clack out some narrative is astounding to me. It takes an act of god for me to put “pen to paper” when I’m under the influence.

Yesterday, the 12th, marked six months since Charlie passed. Tony, the brother husband who I now repeatedly refer to as my brother, asked me why I wanted to commemorate the occasion when I had never been one to do that sort of stuff before. It’s true. I’m not one for half anniversaries or similar milestones. I told him that I wanted to, in this instance, because I had to remind myself. Most of the time, it doesn’t feel real.

All in one moment it does and doesn’t feel like that much time has passed. My brain is under the impression that it happened just last week or, worst of all, that Charlie is just on a trip somewhere. He’ll be back any moment. Why are you worried? Yet in these very moments, it feels like it’s been years. As if things have always been this way.

That feeling I truly despise. I hate how it could feel “easy” for him to not be here, to not be a huge part of my life like he had been.

The further I drift away the more it hurts. My crying episodes used to be small fits of tears, and now the waves come like the growing hurricanes. More than once this past week I’ve had to pull my car over because I was losing my mind. (I can and only cry alone in my car.) In whatever corner I can tuck myself away, I sob until the storm passes. and then continue on as though I hadn’t just broken down because of some song. I wish I could remember which ones struck the most sensitive nerve but, even if you held a gun to my head, I can’t. Maybe I don’t want to remember. I do have a sick tendency to lean into these songs, hard, forcing the extraction of these emotions.

One of the things I do, that borders on psychosis, is that I turn and talk to him. In my mind he’s still sitting in the passenger seat, judging me with his sarcastic observations. I can hear them loud and clear in my mind. Sometimes they even feel like he is genuinely speaking to me, and it’s not my mind creating them. And maybe he is… it’s in that possibility that brings me a strange peace. If our existence carries on after our mortal demise, Charlie would absolutely be the kind to stick around to make sure everyone was “okay” before he moved on to the next life. If such choice exists.

What I am certain of is that as we head into the coming months things are going to become increasingly difficult. Here is where I meet the biggest “firsts.” My first wedding anniversary without him, my first birthday (in 20 years) without him, the first time we don’t celebrate his birthday, the first Christmas, the first new year… all of the fucking holidays.

I’m sure you’ll all get a chance to read all about them. I would like to lean more into my writing, like I had, instead of just experiencing these thoughts quietly, alone. What stops me is sometimes I feel like people think I’m making up all of this, as a way to chase “clout” (as the kids say.)

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 22, 2024

Forever Blue

As I traverse this sea of despair I was just slammed with a rogue wave. It crashed over the side of my ship and I and scrambling to stay afloat.

Maybe that’s more theatrical than I meant it to be… but it applies. I’m sad. Deeply forlorn. I just want to text him to talk me through it but… unless I got a magic cell phone that’s not possible.

I’ve started talking to him out loud. I’ve come under the belief that after death we reach a higher dimension of existence where we can move back and forth through time to see how all of our loved ones lives turn out. Overcome by this delusion I think that I’m speaking to him observing my life. (Always gotta make it about me.) Charlie was such a curious person with so many questions that if there is a remote possibility that my fantasy is true he would do it. And I don’t want him to think for a second that I wouldn’t want him to be apart of those moments.

Just to clarify to any of whom may read this and worry I’m slipping into a psychosis… potentially. However I know he’s not really there and I know I’m just talking to myself. It is just nice to pretend. Takes the sting out of it. I even go so far as to “look at him” because we would make eye contact when we heard or witnessed the most absurd things.

I miss my side eye buddy.

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.