ALS

May 2, 2024

Memories and Missed Opportunities

Last night was strange…

I went to bed and in the midst of my mumbling thoughts I started to think about the most random of memories of my husband. Little things, like when I would kiss his neck or the way he would tap his glass as he would take a drink. Then in morphed into thinking of our final day together.

He woke up and was madly messaging all of the people he’s been corresponding with these past few months. Then when he finally got up we watched The Birdcage. For the life of me I can’t even remember what else we watched. I had wanted us to bookend everything with a re-watch of Philadelphia but from behind his mask he firmly said no.

Once it got close to time, we retired to the bedroom and set up chairs all around the bed. We watched an episode of Taskmaster until the nurse got there. She wrote out the instructions to administer the drugs and split. (Which was not the plan by the way, but that is a blog post for another time.)

At 5:30 we took off his mask and waited. Almost exactly 6 hours later he was gone.

I replayed this over and over last night… Thinking of him lying in bed afterwards, there but not. He looked so peaceful. I would go in there and check on him, brush his hair. I could hear his voice screaming in my head “Josh, that is so weird. That’s a dead body. Gross.”

These memories made me miss him so much. I started to cry but stopped myself because I didn’t want to wake up Tony.

Last night I dreamed of Charlie and I adopting a child. We were asking my parents questions about what we would need and they were excited to meet their grandchild. It was such a lovely dream that I didn’t want to wake up. I got to have my family back for a very brief moment of time.

Charlie had said one time that he would be willing to have kids if we adopted. At the time I didn’t want that, I’d rather have a biological child of my own, but I figured if he was willing to meet me halfway I should too. Shortly after his tune changed and he didn’t want kids. This would be the pattern over the course of our relationship, mostly because we had yet to find our groove. We didn’t know what made us work and how to accommodate our shortcomings. By the time we had figured them out and became a stronger couple, we were in the midst of having an open relationship and he wouldn’t want to bring a child into that. Which is a fair assessment.

Then he was diagnosed with ALS.

In hindsight I am glad we never brought children into our relationship. It would have made everything exceptionally difficult, especially once I had to raise them and take care of Charlie all while trying to process my and our child’s grief. Maddening.

I think Charlie would have been an amazing dad. He was so patient and kind. They also would have been fucking spoiled. I know it. Between him and my parents… the kid would have never wanted for anything.

The thought of adopting now just breaks my heart. They would never get to know one of the greatest people of my life. Charlie would be some myth or legend, yet the reality would be so much more.

I’m glad I at least got to feel it in a dream.

April 19, 2024

One Week…

It’s been a week since my husband passed and it still doesn’t feel real. I act as if he is just in the other room or on some trip. Any moment he’ll be back or I’ll get a text from him and everything will be just as it has been these past 3 years.

Something I have discovered about myself is my “reaction to grief.” In writing I can be as vulnerable as I want to be because it’s a blank page or an audience that may or may not be there. I don’t have to worry about whether I sound too calm or too sad and I never risk making someone uncomfortable. Which is something I can’t do in person. When I’m around other people I put my feelings into a steel vault buried deep, deep within my chest. Only under the influence am I able to spin the dial and let them out for others to see in real time. Otherwise, without these explicit parameters can I share how I truly feel.

This past week I have been constantly around someone. Hardly do I get a moment to myself. Which is by design and is not a complaint, by the way. At the surface I’ve done it because I know that Charlie would have wanted me to be there for Tony, his mom, sister, and niece. Especially his mom. So I honor him by doing that, at my own “detriment.” I hide everything I’m feeling to be strong for those around me. Below this truth, lies the pernicious reality that I don’t want to face my emotions. I would rather pretend I’m strong. The unfortunate part is once they’re buried I neglect to ever pull them out again, and they grow into a thorny, viny weed to choke my joy. The one who would do everything to pull them out of me is the one I grieve for in his absence.

This grief is so complicated even without me hiding it.

The other day my mother-in-law asked me if I was “relieved.” This is a part of the entire process that I have tried so hard not to recognize because the very notion fills me with insurmountable guilt… I am.

I’m relieved that he isn’t suffering, that wherever he is he gets to begin again; and I am for myself. The 24 hour requirement for caring is done. No longer will I get requests to move his hands, give him a drink, help him use the bathroom, bathe him, give him his pills, or move him from one room to the next with all the accessories that follow suit. I can finally sit down and just exist without worrying that I will be asked to do something else. And that is where I feel like the biggest piece of shit. How can/could I feel that way when the person I love is gone?

Now I am left attempting to process everything with all of my bizarre idiosyncrasies, the character flaws I’ve developed to cope with the stresses of my life. I’m in therapy but again when I’m talking to someone I am “indifferent.” I reveal nothing because that would be showing weakness. If they knew how I truly felt they would think of me as a burden, or worse they would use my secrets to betray me. (Wow I sound psychotic.)

The other night I fell deep into familiar destructive habits. It was the same shit I did before I ever met my husband, when (then too) I was not facing my trauma. I made some very bad, deadly choices that in the clarity of sobriety I knew my husband would be utterly upset with me. I could hear him in my head, as loud as if he was standing in front of me, that I need to stop doing these things before they get out of control.

For once in our nearly 21 years together I listened with absolute determination.

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.