October 27, 2023

Maudlin Midnight Musings

Tonight, like I do most days, I started to wonder what my life will look like without personal chaos. Since July 2019 it has been spinning out of control. My dad died the same week my mom was diagnosed with Alzheimer’s, which was only three months prior to my husband going on medical leave before ultimately diagnosed with a terminal illness a year later.

This entire time I have just been pushing through, focusing ahead, prepared to meet the next hurdle. And when this race is all over… what then? What will I be like? What will I do?

Already, I am not the man who started. I have been shaped and molded by this grief. It has destroyed my mind. My memory is shit. My problem solving skills are very rough. I don’t want to go back to that person, because I do believe there has been growth and development. I just want to stop losing aspects I once treasured.

My life has narrowed down to a near distinct point. I just exist for another person. To keep him going. Keep him comfortable; happy. To carry him toward the end.

There is a world outside of the home that I now spend 90% inside of, but I seem to care less and less about it. Or anything else really. Social media has become a side note to everything.

And then as I start to look up, past the mess, and toward the distant horizon I am overwhelmed with guilt. How could/can I think of a life without someone in it. How could/can I be so selfish? I know life does/will go on… but do I have to think of that now? As the guilt sinks deeper into my body I move to other thoughts and vices.

October 20, 2023

Memory Polaroid

Tonight I had a flash of this beautiful memory of my husband. It was from our stay in Rochester, while getting his “second opinion” with the Neurology department at the Mayo Clinic.

While I had been working at my minuscule hotel desk, he went to Target and bought a folding card table so that we could play Magic the Gathering (MTG) while on our trip. The card table took up the entire empty space of the room but we made it work. He used this blue and black rogue deck against my red and green deck. He ultimately won by a sweet combo that I remember just multiplied his faerie rogue tokens to an insane level and wiped me out in one turn.

While this doesn’t appear to be at all significant, it truly is a remarkable moment for me. My husband was never one who liked nerdy things. I had tried to get him to play MTG when we first started dating but he wasn’t interested. Then when he did invest in buying a deck to play… was the same night he found the proof that I was cheating.

Sitting in that room, playing a nerdy game with him is such a bright spot in the sea of growing dark.

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.