married

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.

September 26, 2023

The waiting room

Last night it occurred to me that I am back in the ICU waiting room with my mom, delaying my dad’s removal from life support. Except instead of holding off until my cousin and aunt arrive, I’m waiting for someone that will never come. It’s excruciating agony, like a sharp knife being pulled, slowly across my skin.

We were meant to start hospice but postponed the transition because once we do we lose our team of doctors that have been with my husband since he was diagnosed with ALS. In addition, we’re hoping to get a substantial supply of the medication for the disease. Hospice will not cover that drug. For us to pay out of pocket it would be $690/bottle. My husband is handling those details, from his eye-gaze device, so I am unaware of the status. All I know is that Friday is the day we told them we would make the switch.

His condition is worsening. His speech jumbled and incoherent, at times. Where before he would sleep at the drop of a hat, now not even pills will help. He’ll sleep for an hour or two and then be up for rest of the night and into morning. And where previously he would take Xanax once a month, it has now become a twice a day dose.

Every time I go into our room, and he is sleeping, I just stand in the doorway and stare at him. My eyes focusing on his chest and face for signs of movement. If he were to wake up it would be incredibly creepy. It would be for anyone, really. I do it because I am seeing if he is still breathing. That’s typically how someone with his disease passes, in their sleep.

The other night I was talking with my husband through text message (kind of ironic that our relationship started with text messages…) as we lay in bed side-by-side, his breathing mask over his mouth and nose, discussing hospice. Somehow we started talking about him dying in the house and he said he didn’t want it to happen here. I replied, “I don’t think that you habe any control over that. Unless you’re moved into a facility. And that is something that will not happen.”

So, I sit here and wait… never knowing what the next moment will be. Not knowing what to plan. People are asking me to plan things months in advance and… These other stories, plans, desires, are just the incoherent hum of the television in my “white waiting room.” A world exists out there, but it does not for me.

August 4, 2023

Panicworks

It’s late and I can’t stop thinking. My body has decided to go through “anxiety drills” and I keep having short and intense panic attacks. I wish I could say that I don’t know where they’re coming from but I do.

My husband has drastically declined these last couple months; ever since he got the feeding tube. We had gotten it as a precautionary thing but it just feels like we hit the gas on his ALS.

We had a big family trip to Las Vegas planned for the 18th. However my husband canceled those plans tonight because he doesn’t think he can physically do it. I don’t blame him. His speech and breathing have gotten bad just these last few days. At times I can barely understand what he’s saying. (It’s like my mother’s Alzheimer’s all over again.)

Just a couple weeks ago we were having a preemptive conversation about him maybe getting a breathing tube (trach). During this he was leaning towards doing it, but after his doctors appointment he has decided not to get one. If he were to do that it would require (literal) 24/7 care. The brother husband and I would need to take classes for his care. My husband wouldn’t be released from the hospital unless they felt that we were competent enough to handle it.

My husband already feels like a burden as it is, so once they told us this I already knew his answer without having to ask.

I’m not ready to lose my husband. I’ve known that the ultimate day was just over the horizon, but even with all the preparation it still destroys me. I can’t imagine a life without him present. Without his impish smile when he does something sinister. Without his advice, his words. He is the ultimate “Josh Whisperer.” (That’s me by the way. I’m josh.)

I just have to keep reminding myself that we’re not there yet. It hasn’t happened.

June 2, 2023

On Repeat in My Head

The hubby and I have had many odd adventures throughout our nearly 20 years together. The weirder and more bizarre the better. They are the stories we tell when we’re drunk with friends or strangers. And I try and stick to the actual events as much as possible, because nothing is more disingenuous than fabricating details of a story to try and make it funny. It’s why I could never be a comedian. I can’t lie about details for the sake of a laugh.

I have this habit of putting a single song on repeat for hours, until the song holds little to no meaning for me. What I have discovered in my many TikToks is this is a habit of people with ADHD. Well, you pegged me again, you creepy app. Since last night I have been obsessed with a YouTube video of an unreleased Taylor Swift song. I don’t quite understand why this one didn’t make the cut for her album, it is truly phenomenal and I am OBSESSED. I’d post it here but I don’t want it to somehow get caught by the TSMachine and have them remove it. My queen should just release it! But she’s probably just waiting to do so with Lover Taylor’s Version. Sneaky gal.

Todays obsession reminded me of my first trip to London for my Honeymoon/Birthday. We dove head first into this trip without any careful planning. All we had on the agenda was our stay, a trip to Leavesden to experience the sets of Harry Potter (a different time kids), and we had purchased the “London Pass.” Nothing more. Which is kind of our M.O., honestly. I personally feel like that is the best way to travel because it always results in the weirdest stories. As in this one…

Charlie had asked “what are the most ‘English’ things you can do?” And the most obvious and desperately pathetic was to have “authentic” fish and chips. Of course we’ve had them here, but I thought maybe (just maybe) they were different in the land in which is originated. And… It did not disappoint.

The newly minted husband researched and found a place that was supposedly “the best fish and chips in London.” Obviously they had given themselves that name because… Dear god.

We grabbed a black cabby and made our way across town to a residential neighborhood to go to this hole in the wall restaurant. We walked in and the fry cook was listening to this sad, somber song at ear splitting levels. We made our order and then went and sat on the right side of the shop which I thought was this huge dining area. Oh no. It was this thin strip of space, with a counter attached to the wall with a full length mirror immediately above.

“This is going to be fun,” I had said, gesturing to my reflection. “I get to watch myself as I eat!”

“Eh, it’ll be fine.”

As we waited the sound level of the music was undeterred. At least it was an okay song. I have a tendency of getting easily irritated with music I do not like.

We got our fish and began eating. That’s when we became abundantly clear that the scales were still on the unbattered side of the fish.

“Oh my god,” I said, showing him the steely-gray side of my meal.

“Oh, that’s weird,” Charlie said, “Maybe that’s just… No. Mine too. Maybe that’s just how they do it.”

“Well, they’re doing it wrong.”

He chuckled, “Is that so? The place that originated-“

“Yes.”

As we picked it at our fish, trying to avoid the scales and the reflection of our grimaces in the mirror, it became abundantly clear that the song that had been playing when we walked in was on repeat. I started to laugh to myself as I concocted this elaborate story in my head how the fry cook was going through a recent break-up and just could not stop listening to this song.

I imagined the cashier reaching their limit and turning to him, “Oy, Trev, please play anything else. I beg of you!”

And Trevor would continue on, frying fish and singing along to the song. (Did I mention the fry cook had been singing along to the multiple repeats?)

The two of us couldn’t stand looking at ourselves eat this scaly fish any longer, while Trevor went through the motions, so we headed out onto the street and walked back to our hotel.

This is where I fell even more in love with the city. (Side note, it was guy fox day.) The gentle orange glow of the street lamps lit our way, as we passed by an old, old, old cemetery and a couple of boys who were kissing and hugging until they saw us coming their way. I wanted to say “Don’t worry, boys, this is my husband.”

Now that I have successfully bored you with my lackluster story, I will return to my repeated listen to “Need” by Taylor Swift. Please, excuse me.