A New Member of the “Lollipop” Guild

I entered into the Midnight Madness short story competition and have had a week to concoct a short story. Have I started? Not really, other than planning and plotting in my head. So, I’m finally sitting down to bang out a rough draft. In the past I have done it day of the deadline so at least this is some progress. However, to get the engine purring before I dive in, I thought I would write a blog. It feels like so much and nothing at all has happened.

My husband has definitely progressed. But I think it’s a subtle change that isn’t as obvious to it’s broader implications. For some reason he has become OBSESSED with his mouth. He has explained to us that it feels like he has a tapeworm that is trying to escape through his mouth. Like this parasite is reaching up through his esophagus to escape. We called the hospice nurse and she assured him that “that” isn’t possible. (However I was told a story from my grandmother that her mother had a tape worm and after a bite of horse radish it crawled out… but I guess that was a ‘tall tale.’)

The nurse’s suggestion was to provide us with these little “lollipop” sponges to moisten his mouth and try to break up that dried phlegm at the back of his throat. Now every 20 minutes I’m dipping in these little sponges and swabbing his gums and tongue. This isn’t that much of an ask, except for me it comes with past trauma and lots of emotional baggage.

When my mom had lost the ability to swallow and was heading toward her end, the hospice nurse provided these exact “lollipop sponges” to moisten her mouth and lips. Seeing these again has brought up the feelings attached to them. I shared my feelings with him and he assured me that they are unrelated. This is not a sign of things to come. At least not in the immediate future. Yet… aren’t they?

With ALS he will eventually lose the ability to speak, breathe and swallow on his own. It’s just a natural progression of the disease. The muscles involved in these bodily functions atrophy and he is left kept alive by machines. He has already shared that he doesn’t want that, and I do not blame him. Neither would I. So… we have entered into a new waiting game, in my mind, of whether this is a sign of that or not.

I hate all of this. I hate this for me and for him. He feels so much guilt for how much he is relying on and asking of Tony and I. And I feel bad because in the face of this new task I am overwhelmed with it’s overall meaning. So I respond by being short and cold when he asks. It appears that I’m angry at him for making the requests, when in fact I’m mad that this is happening and don’t properly know how to process this change.

It’s further made worse because I generally don’t know how to process my feelings. I never learned healthy coping mechanisms or how to unpack my feelings in a way that I could handle them without flying off the handle. My go to response for most things is anger/rage. I think it makes me appear “tough.” Yet that couldn’t be further from the truth.

Possession by My Mother’s Soul

I’m genuinely over war. I’ve grown weary of the constant state of creation of weapons to destroy people deemed “our enemies.” It’s exhausted and I no longer want to participate in it.

Now I can hear what some might say, “What if they try and attack you?” Let them. Let us use our weapons of “mass destruction” (oh, the irony) in use for defense instead of offense. Why waste resources and LIVES for the sake of… what?

It is abundantly clear that the primary purpose of war is for wealth creation. Not for the people, but for the select few who have access to this power. Whether it be directly or by association. I refuse to participate in the accumulation of wealth for those who see me as a pawn in a ridiculous chess game.

What is happening in Gaza is a display of overkill. It is genocide. You have a group of people isolated so much that to bomb them eliminates there presence, especially if they are not allowed to leave.

To justify their actions of “retaliation” by stating “they did it first!” makes one sound like a child. It’s amazing to me how many Christians will support this behavior when it is reported in their holy book to “turn the other cheek so that they may strike it too.”

Christ was a pacifist. To seek retribution only makes one the same as the one who instigated the first unwarranted attack.

This is a point I wrestled with the most as a child, growing up in the church. I wanted satisfaction. I wanted revenge on those who had hurt me. My mother was such an advocate for pacifism. She taught me that it didn’t matter, to just walk away. Lowering yourself to their level only proves that you are just like them.

At the time I hated hearing it and refused to let what doing so meant.

Seeing the hatred some gays have toward the “queers for Palestine” is truly unnerving. I get that we don’t have shared experiences or life lessons, but to advocate for the destruction of the people of Gaza because some of them “kill gays” is not a justification. At that point they are no better than the Muslims who want to kill them for being homosexual.

“You have heard that it was said, ‘An eye for an eye and a tooth for a tooth.’ But I say to you, Do not resist one who is evil. But if any one strikes you on the right cheek, turn to him the other also” (Matthew 5:38-39 RSV).

For the life of me I cannot believe I am quoting the bible in a non-ironic way. My mother’s spirit must have possessed me. There is no other explanation, because I am an athiest and think all religions are cults.

I have just reached a point in my life that I fully comprehend that: death is inevitable. We will be taken regardless of what we have done/do. If someone kills me for being gay, well, so be it. I am going to die one way or another. If it is at the hands of someone else’s bigotry that speaks of their character and not mine.

I will not concern myself with that fear anymore. Much like they should not concern themselves with how I live my life.

That said… I also won’t roll-over and “accept my fate” if I cannot escape any possible “threat.” Self preservation and the safety of those I love is my top priority. I just refuse to destroy my “soul” (for lack of a better word) by lowering myself to their way thought.

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.

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.