death

April 8, 2024

April 12th

It’s strange. One would think that at the start of the worst week of my life I would have something to say. Something to impart on how I am feeling… But I have nothing. Genuinely nothing. I feel numb. As if I have hit pause on my entire body. I imagine if I were to pursue some answer it would say that it is some sort of trauma safety response… However I don’t have the time or the energy to do it. And in the end… what would this answer serve?

For some context, this Friday (April 12th) my husband will go to bed without his breathing mask. It is this mask that has kept him around as long as he has, and without it he will most likely pass way in his sleep. We have spoken with his hospice nurses and they will be there to help keep him comfortable as he “transitions” into the next stage of his existence.

I have known that this day was coming since he was diagnosed with ALS. It’s not like that this was sprung upon me out of the blue. I knew. I have known. It’s just weird to know the exact day. Prior to this I would wake up every morning and see if he was still here, or whenever he took a nap. I have been convinced for sometime that he would go while we slept. Primarily because that was what the doctors had told us was most likely to occur, and even before he had been diagnosed I would wake up in a panic throughout the night and see if he was still breathing. It’s weird. It was as if I knew.

All I want to do is open up my heart and pour out all I feel… I am craving some semblance of vulnerability but I have none. Is this shock? Maybe it is denial, until I am there to see and feel the reality.

For so long I have lived with the “not there yet” attitude. It was the title to our weird little video blogs we would do on our trips. It was literally the words I would say to myself in the early days of diagnosis, when my mind would spiral into all of the gory/overwhelming possibilities. To calm myself I would repeat “we’re not there yet” so I could focus on where we were in all of this. Well… we’re here.

The thing that is keeping me together is what Charlie said the other day, when I asked how he was feeling: I’m excited to see what happens next.

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.

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.

January 26, 2024

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.