husband

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.

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.

December 2, 2021

Midnight Memories

So to set the scene I recommend listening to “Blinding Lights” by Loi. It’s probably the best version of the song and the tone of it completely encapsulates the memory I’m going to share.

The first thing my husband ever said to me was through an instant message on AOL. He let me know that he and Diego were still together and not knowing who he was (and being the annoying teenager I was) I continued on the conversation as if I knew him and what he was talking about. I finally dropped my charade and asked him who he was and it was then that I added him to my buddy list, cchuck77383. From then on I would message him whenever he came online because I just knew things with him and Diego were on the way out.

This all happened at the very end of September 2003 after an abrupt break-up with my third boyfriend. (Who has since passed of stage 4 cancer.)

I was taken by him (my husband) because he happened to share that my ex wanted him, but my husband was not even remotely interested. This made cchuck77383 immediately attractive to me.

I wasn’t a good person then and I know that now… but regardless of what got me to meet with this man doesn’t matter now. I am still here.

After things with Diego fizzled out he agreed to meet me one late night at a Denny’s.

I put on “sleeping beauty” in my bedroom, snuck out my window, and drove across town to meet this stranger I had only ever spoke with online.

He didn’t tell me what he drove, but I knew he had arrived the moment his white mustang drove past me. For the next hour or so we sat in a booth talking, while I watched him nervously spin his silver Motorola flip phone, twitch his nose, and run his index knuckle up his phantom mustache.

For whatever reason he liked me and invited me over to his apartment downtown to watch a movie.

The first thing we ever watched together was Philadelphia. Which, if you don’t know, is the story about a man dying of AIDS. He swears now he had never seen it, but I remember him telling me it was a good one to watch. However he had also just started collecting DVDs at the time and it is highly likely that he hadn’t. I tend to rely to heavily on my own memory. And I am (at times) wrong.

That early morning, when the movie had ended, he walked me to my car and kissed me, wishing me good night. I drove away thinking I would never see him again, feeling satisfied that I got to make-out with the guy my ex wanted but couldn’t have.

Little did I know that this dude would then call me every subsequent day and talk my ear off. There isn’t a day since that he hasn’t. It kills me most to know that his disease will eventually take that from me. I have spoken with him at length ever since then and to think I will have to face a day where I don’t just cuts my gut.

September 3, 2020

Project: Optimism

Depending on things going according to plan (and let’s face it they don’t tend to do that in my family), the husband and I could very well be taking a road trip to Minnesota to get a second opinion on his ALS diagnosis. While he and I believe the competence and skill of his current doctors, it would be negligent on our part to not make the effort. In addition, I know his family is holding out hope for their own “google search diagnoses” to be true. Since we were told he has motor neurone disease (aka ALS), each one of them has become experts within a few key term searches. The problem with their optimistic perspective is that it’s infectious. Now I too have a glimmer of hope.

I hate how pessimistic I have become. I call him “Dark Josh” and he jumps out every once in awhile when the weight of the world gets to be too much. He’s realistic, but also very cold and, at times, cruel. It’s not difficult to maintain my jaded world view after all the bullshit from this past year.

I say these things, though clearly I don’t believe them as staunchly as I had assumed. Or I wouldn’t be entertaining the idea of this side quest.

Don’t get me wrong, I really don’t want his diagnosis to be real. The last thing I want to see is my husband slowly disintegrate before my eyes, until he’s just gone. I’d rather gargle Trump’s balls while he poured bleach in my eyes. Yet, I can’t undo what’s already in process or ignore the matter-of-fact way in which these doctors discussed his dying… But I guess I can hope.

The hubs’s family holds a firm belief that he has a vitamin deficiency. They assume as much because his symptoms did not occur until after he had weightless surgery (the gastric “sleeve”). It was only a month (or two) after that they manifested. Many of the symptoms tied to this keyboard-diagnosis are very similar to those of ALS. But there are also a lot of symptoms that these articles claim to happen with these deficiencies that he hasn’t experienced. And the same could be said for the ALS. Even the doctor admitted that the timing is suspect and that there have been some atypical results in their tests. He too recommended getting another’s opinion.

The fact of the matter is, I am willing to go to the ends of the earth for him. No matter what it is. I will go with him, hoping for the best but preparing for the worst. And if we get the same answer, then we will take the next steps to slow the process. My biggest worry is that this will all have been for nothing and we will have wasted what little time we do have.

P.S. I hate that both my mother and husband have diseases with ticking clocks. Add some new writer’s to the room, God. You’re getting tired and sloppy with these recycled plot points. At least give me a long lost twin brother.