married

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.

September 29, 2022

The Soundtrack of my Life – 34 – Chicago

After a 3 day stay in Chicago we are back on the road heading to Akron. This little road trip of mine was concocted to celebrate the one we took for the hubs’s second opinion at the Mayo Clinic. It was also a defiant choice because he told me previously that he wanted our Alaskan cruise to be his last trip. I can’t have that. Not yet. He has since recanted his statement. Instead he has corrected it to be “no more road trips. Only cruises.”

That’s fine, punkin. Whatever you want.

Other than the title of the song, this doesn’t make me think of Chicago in the slightest. I thought it was a good choice seeing as how we had just been there. Expect the forthcoming songs to be similar in nature. What’s fun with my future choices is that they do in fact remind me of moments in my life.

The first time I ever heard this song, and immediately became obsessed with it, was from the opening credits of the Netflix show “The Politician.” It may have aired in 2019 but I didn’t get around to watching it until the first Covid lockdown. It had been a special request watch from the bf since it had his crush, Ben Platt. My interest in a Ryan Murphy program was minimal at best. So, I had kept pushing it off until we were faced with copious amounts of time and nothing to fill it with.

Covid truly changed my life. As I’m sure it did for everyone. But it feels like for me it changed everything significantly moreso. For the better.

Up until lockdown, the interaction between my husband (Charlie) and my bf (Josh) ranged from non-existent to limited. For the first 2 years of Josh’s and my relationship it had been very, very separate. Per the bf’s request and just the newness of polyamory for all of us. When everything closed and we couldn’t go anywhere, we were forced together.

We all started watching tv together in silence. It was awkward at first. Josh didn’t know how to act around Charlie and vice versa. It took some time to reroute old habits to where they began to have their own rapport.

My two relationships are very different in how they function. My husband is not very affectionate, we are more mentally intimate (conversations/debates/discussion.) Physical intimacy is just not who Charlie is. A peck on the lips every once in awhile satisfies his needs.

The boyfriend on the other hand… he’s attached to the hip. He has to be touching me. And I don’t say that as a complaint, it’s just how it is. I appreciate both forms because they suit me. I am someone who is happy when my partner is. So trying to find a balance with the two was a challenge.

This song brings back those first few months of mixing the two lives. If you compared how they are now to then, night and day. We’ve done many trips together. We’ve shared a bed (in a non-sexual way for you nosey betches) and we’ve all gotten comfortable around each other hanging in our hot tub in the buff. Again, nothing sexual.

I have to recognize how much the bf gave in the beginning. This was not initially the situation he wanted. There were other boundaries in place that kept everything separate. I imagine to keep himself from being hurt by seeing me with the husband. He was making himself fit for me. Either he has grown accustomed to it and appreciates the relationship for what it is or he’s tricking himself. I hope it’s the latter. I constantly worry that I have somehow manipulated him into this relationship. I do not want that at all. My number one goal is ALWAYS consent. And when I have brought up these same concerns to him he has always affirmed that I have not. He is here of his own choice.

Unfortunately the bf is not with us on this trip. A month off is entirely too long for him. He will however be meeting us midway through, for the weekend, and at the end. And I’ll be happy to have my whole family together again.