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 15, 2024

Here we are… halfway through March. Inching ever closer to the ultimate day. The final day.

The past few days I have started behaving peculiarly. I’m consuming food like a vacuum and I’m even forgetting ever even having eaten something until I go to get it to consume it again. I’m disassociating so much so that I nearly refuse to get out of bed. And with all of these signs I do not feel sad. Not actively. Looking at the signs it is clearly depression but… I feel nothing. It’s as if my heart has shut down.

I want to write something. Put “pen to paper” and pull out this poison but I cannot think of what to say or where to even begin. I can’t even be bothered. I just want to lay in coffin and shut the lid. (God that sounds so emo…)

I lay in the darkness of my spare room, listening to music trying to even figure out some poetic way to describe how I feel but… I feel like a husk; an empty soulless doll staring forward with a smiling, blank expression.

Sometimes I worry that this will cause me to have a nervous breakdown. I feel as though my mind is strong. It is solid and sturdy to weather any storm I may encounter. But you never know… does one ever? I keep thinking about my dad… did he sense his weakness? Did he feel the snap? Was he even aware of it? Was there any control or was he a puppet with something else pulling the strings?

I’m sorry… this makes no sense. I’m not making any coherent thought.

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.