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.

March 4, 2024

Brain Blip

Sometimes I wonder if life is just attempting to cobble together something that looks like happiness. Like it never will ever be everything you want it to be, but it can resemble something like what one would imagine. I say that because… everything in my life has always been that way. I’ve always given up something I wanted because it was a misshapen piece and didn’t fit in. Even now as the world around me is utter shut I’m just stringing together minuscule joys to find some sense of peace. Yet even those are nothing when faced with the overwhelming reality of EVERYTHING.

There is no escape from it. And even when one ends I am SURE there will be something even shittier waiting on the other side of this mountain.

I try and have some fucking perspective because… this is bad but not as bad as things could be. I’m trying to ground myself by thinking of what every Palestinian is going through. And try as I may I will NEVER understand. The chaos and cruelty they are enduring is beyond comprehension.

February 22, 2024

Of Faith and a Spiritual Brother

When I was a little lad I vividly remember concocting an imaginary friend who was my brother. I referred and responded to him as such. I think I did this out of necessity and loneliness. I was an only child. One of my biggest dreams was to have a sibling. So, because my parents insisted that was impossible (since my mother had her baby box shut down) I made one up.

As an adult I’m glad I was alone. It made me stronger and more independent than my friends who have siblings. I feel like they rely too much on other people for things and that bugs. However I know that’s me being an “only child.”

Before my mother had me, she had a miscarriage. It was shortly after my mother and father had gotten married. It literally happened in the bathroom at the party her work threw for her after the ceremony. My mother said it was god punishing her for having sex outside of marriage. Which, if that were true that sounds like a sociopath and not a benevolent, loving father figure.

Shortly after she got pregnant again (I assume I was conceived on Valentine’s Day) and had me.

When my mother was going through the final months of her Alzheimer’s she started to see a little boy. One day I came to visit and my mother was talking down to a child, with the nurse standing watch over her. I stepped next to the attendant and she turned to me and said in a hushed voice “she’s talking to her son.”

“Well that’s odd,” I said, “I’m the only one she has.”

I said hello to my mother pulling her from this fantasy.

I’m not sure if it was this same day or a few days later my mom turned to me and said with clarity, which was rare because her disease had taken her speech from her and she could only utter garbledegook, that my brother had come to visit.

“Did he? That’s good.”

She then began to tell me that he was the same age as me, but not. He didn’t know very much, because “he hadn’t gone to school.” There was another thing she had said that was like me but different, but for the life of me I can’t remember. (Grief has done a number on my memory.)

These two events didn’t line up in my mind until a few weeks ago, when I remembered my imaginary brother. Since then it has called into question if he was made up. Maybe on some level he has always been with me and I could just feel him there.

This is all nonsense in the big scheme of things. Without concrete proof or examples it’s left up to faith. That is something I don’t have, not anymore. I abandoned spiritual beliefs when I realized that either there isn’t a god and everything is a chaotic meaningless accident, or there is a higher power and he is just incompetent or genuinely enjoys watching people suffer.

With that said, being surrounded by death does make you question even things you had once believed. The world is strange and there is no denying some things just don’t have explanations. Or one’s we can give with certainty.

My husband has been invested in researching the after life and reincarnation. (For obvious reasons.) Somehow my tiktok algorithm picked up on this and would show me videos of parents retelling events where their kids had said or known of details and events that they genuinely could not have otherwise. It was then that I was introduced to the concept of a “soul family” and how there is a belief that we reincarnate with the same collection of souls in different roles. I added my own perspective that we are given knowledge of these lives and offered a choice of what and where we want to go. It is this vein of thought that I wondered if my sibling knew what was going to happen in the future and thought that it’d be best if I took the role instead. This of course only being plausible if any of that spiritual stuff is real.

In the end it’s more likely that I am just trying to make sense of all of the chaos and trying to give it purpose and meaning, because it is what we do as humans. The other day I was ranting to the bf about what is the life lesson, what am I meant to get from these events happening all at once.

His response was ‘there is only a lesson or meaning if there is a god guiding everything.’ To that I cannot believe and to which I refuse. I’m sticking with the my accident/chaos theories.

The only other “fact” I have for this brother being with me is that I never feel alone. Granted I’m never physically alone. I am constantly around someone (much to my chagrin.) Even in these odd moments I am by myself I feel as though there is someone there. I could and do sometimes just turn to them and talk as though they’re listening. Although there is nothing there that would warrant this action. And it is nothing new. I have done this since I was little. It’s all just a feeling.

February 14, 2024

Wanting to Write

I want to write. About what I have no idea. I am a ball of emotions. I want to impart some immensely emotional or prophetic piece that will stir the hearts of whomever reads it. Yet I can’t for the life of me think of what I could or even would write.

When I was younger, writing was how I would cope with my emotions. I’m a very cerebral person and live (for the most part) in my head. For many years I thought this was the way everyone was but… I have learned it’s kind of just me and a handful of other people. Writing things out always helped me get my thoughts straight. By letting the words flow from my fingertips I could examine and evaluate them in such a way that made my feelings these abstract “editable” things. I could rearrange and reword them in such a way that I could make them make sense. Now I leave everything bottled up.

The most likely culprit of my inaction is due to the secrecy I held. Or of what I was worried would be found by someone else, should I put it in some electronic journal. Some may respond by saying “well, why wouldn’t you just have a secret journal, that no one could read?” And what would be the point of that, Jan? “A writer writes so a reader can read.” I have always felt that way, which is why I always treated my life like an open book. I wanted to share my story so I felt heard or understood. Then the secrets began and the dislike for my openness was made apparent that I shut down.

Then there was the “distractions” whenever I would write or the belittling that would ensue. It started outside but it moved deeper inward to the point that I believed it as gospel. I stopped writing. I couldn’t let myself believe that I was good. I refused.

I think the moment that started to reverse all of it was when my husband told me that my novel was good. The mouth who had set the ball of my self loathing in motion was the one who picked it up from its trajectory. Its strange. That really did undo everything from before. Well… I wouldn’t go as far as to say that. What it did do was repair some of the damage. It brought me the light that I needed to get out of the darkness of which I had allowed myself to be consumed.

Now that I am older I have let go of the want to be a “famous” author, or even one that has household recognition. I’m finally in a place where I would be happy as a “published author.” My biggest dream is to grab a professionally printed and bound copy of my manuscript from a bookstore shelf, hold it in my hands and know that I made it.

Now if only I could get this want to write to line up with the manuscripts I have languishing on various computers and thumb drives.