marriage

March 5, 2024

Scheduling “Farewell”

My sister-in-law said it best when she stated that all of this is very surreal. She was commenting on the fact that my husband has decided to stop using his breathing machine at the start of April. He had randomly asked my thoughts on it one evening. As usual, I told him that it is entirely up to him on what we do regarding his care. He didn’t respond to me in that moment, but he answered later that week when he announced “the plan” to his mom.

For context, my husband uses a breathing machine about 90% of the day. The only times he doesn’t use it is when we’re transporting him from one room to the next or getting him into a bath. Then once he is situated we put it on him. This is a bi-pap machine, not to be confused with oxygen. It’s used to assist in the push and pull of air out of his lungs. It never occurred to me how much heavy-lifting it was doing until we had to take a trip to the ER. He was so anxious about the whole event that we had to bump it up to the “emergency” level. I watched Charlie’s chest rise and fall with every pump of the machine. Usually his breaths are so diminutive that I have to stare at him for a solid minute or two to see if he is in fact breathing. More often than not I give up and look to his neck or face which have more prominent signs of… y’know.

As my husband explained to his mom, and not so much myself or Tony, is that he has gotten to a poor quality of life and he is putting too much strain on the two of us. He wants to do it in April after both my nieces and Tony’s birthdays.

My own perspective on the issue is that once he stops use of the breathing machine, that will be it. I told him as much last night, regarding his breathing. He again didn’t respond until later when he told me the next morning that he had started to focus so much on his breath that he began to panic. He hadn’t noticed how small of a breath he takes.

At least giving everyone a heads up kind of takes the initial sting out of it. It’s different dealing with loss when you know it’s coming. It doesn’t make it any less painful, but it does make it easier to compartmentalize.

One may want to know, how do I feel about all of this… Well, when charlie was first diagnosed, literally the next day, we were sitting silently in the hot tub on our patio. He was staring off into the middle distance thinking.

“I need to ask you something,” he said, fighting back tears. (He refuses to cry.) “I want you to promise me that when the time comes that you will help me.”

It took me a moment to realize what he was alluding to…

“I promise,” I said.

I’m such an idiot… I end up giving more than I am willing. Especially in the moment. I’m a people-pleaser and will do anything for those that I love. Even at the cost of myself.

I am also a man of my word… Which makes this complex and complicated in this scenario. However, he has made it abundantly clear, in very clear and precise words, that he isn’t committing suicide. He is not doing that. He is just attempting to “speed up the process.” He, rightly, assumes that if he stops using the bi-pap that it will happen sooner rather than later. Since the nature of the disease is to take away the muscle strength to speak, swallow, breathe, and move.

As it stands, on April Fools Day we will no longer rely on the assistance of the breathing machine.

December 15, 2023

The Soundtrack of My Life – 44- Snowman

Sia has never really been on my radar. Other than the mega hit Chandelier, the only song of hers that I can think of was one teens were using as the soundtrack to their “pity me” videos. Y’know the one’s I’m talking about? It’s where they film themselves holding up pieces of paper with “their story” written in bold marker, while they sob. Teenagers (my younger self included in this statement) are so hilariously over-dramatic. I forget the name of that particular track, but it’s that one.

Regardless, I discovered this song last year while trying to shoehorn the “Christmas spirit” into me. I really wasn’t feeling it, and no amount of “balsam” scent or holiday cookies were doing the trick. Luckily Spotify has a “Christmas Hits” playlist that includes some of the most well-known holiday hits. I’d strike it up while I was driving around for work. When Snowman played from my speakers I was instantly hooked. I couldn’t explain it. I stopped the playlist and put this one song on repeat for the next two days.

Even this year, I had forgotten all about it until I did the exact same thing to drum up some holiday joy. Once again this captivated me like no other song and I was obsessed.

An internet friend of mine once told me that we tend to obsess over songs we identify the most with. I didn’t disagree and still don’t, but I couldn’t quite get why the song about a snowman would consume me so aggressively.

As I like to do, I over-analyzed the lyrics and tried to pick the song apart for it’s true meaning.

Granted… I could just be talking out of my ass as I look for some deeper meaning. For all intents and purposes it could have just been a fun song they wrote to make money. The words just fit the rhyme and it sounded festive. But as an “artist” I refuse to believe that these things are just “commercial.”

What I came to was that this song is about someone who is dying. Why choose a main character that is so fragile. A snowman is made and can only exist in winter. The time they are present is fleeting, but while they’re there you have as much fun with them in the snow, while winter lasts.

The song goes on with the singer pleading with the snowman to not worry about the inevitable, be here for me. This is the one piece of the song that I feel odd about, because it almost feels selfish to me. The singer begs the snowman to not worry and to not “melt,” for them. However, I don’t think that’s was the intention. My assumption is more of a reflection of my own insecurities.

The narrator proves their selflessness in the chorus:

I want you to know that I’m never leaving
‘Cause I’m Mrs. Snow, ’til death we’ll be freezing
Yeah, you are my home, my home for all seasons
So come on, let’s go

They are reaffirming that “I am here, I will be here until the end.”

The lyrics continue on that the two of them can run away and hide out in the north pole, a fictitious place, to escape the melt and continue on forever.

If you haven’t picked up what I’m putting down… It’s about my husband. My “snowman” and me.

This has single-handedly become my all-time favorite Christmas song. I could genuinely listen to it non-stop for days without growing tired of it. Even while the lyrics are somewhat sad if you kind of “break them apart” the music is really selling the hope of stopping the melt and finding happiness in the north pole.

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 24, 2023

Homosexuality U-Turn

It is strange how a piece of news, totally unrelated to one’s life and story, could cause such a visceral reaction in oneself. The other day I got news that a close acquaintance of mine has decided that he “no longer wants to be gay.” He discovered this new feeling about himself after having been married to his high school boyfriend (and only recently got divorced from), after go-go dancing at multiple gigs, into pup play, having an OnlyFans for a short period of time, and then diving headfirst/balls-to-the-wall into a new relationship with a mutual friend. The mutual friend said he woke up at 1 A.M. to find that the “ex-gay” had left. The reason he gave was he didn’t want to be gay anymore.

I want to point out that all of those things he’s done are not bad. As long as he wasn’t hurting anyone (other than himself, apparently) then there is nothing wrong. Live your life, gurl.

I am genuinely dumbfounded. I have this whole tirade I could (and previously did before I deleted it) about religion and the toxicity it creates, but I chose not to. Just know I loathe religion of any kind. Faith should be a personal, spiritual journey where one opens their heart and mind to what could be out there. Yet, instead it is used as a means to control the masses. I am not about control.

After some lengthy discussion with my BF I discovered that this friend has always wanted a relationship with his parents. He doesn’t have one because of his “sinful” life. And when he had started dating this mutual friend, he got back into church and I think it all snowballed from there. But considering who he was dating, I’m wondering if he was just spinning out of control and is in the midst of an identity crisis. (I mean… clearly.)

Focusing on just the parental relationship aspect, this unlocked all levels of trauma for me. When I came out to my mother it was absolutely not received well. At all. My mother legitimately did not speak a word to me for 3 months and chose to pretend I did not exist whenever I would happen to occupy her orbit. At some point my mother softened and eventually progressed to the point that she signed my marriage license and would refer to my husband as her son-in-law. I loved that, however fleeting it was. My mother’s dementia took her mind back to “pre-acceptance mom,” where she was a homophobic cunt. (Sorry, mom, not sorry.) She refused to live with me because we were gay. She would repeatedly ask me why I never had kids or get married. It sucked. So much.

Hearing him make this “choice” is disheartening. He is choosing to forego his own joy to possibly have a relationship with someone who has ALREADY SHOWN that his feelings and thoughts are not valid. She wants a fake him, not the real thing. This hurts my heart for him. At least I had a moment of acceptance before it was ruined. He’s never had anything.

Looking at all the facts: what we can see and experience, this is it. We just have this moment. Right now. We are not guaranteed anything, other than it will not last. There is no proof to an after life. Nothing concrete. (However there is more proof to reincarnation than an afterlife.) To throw one’s one opportunity for joy away to please some uppity cunt who can’t get over her own brainwashing is some of the dumbest shit. Life is a journey and sometimes not everyone is going to accompany you on it. And that’s okay.