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.
The Journal of a Jaded Josh 
I truly believe love never leaves you, it just changes and finds you again in a different way, I hope Charlie gets you rest and his peace brings you solace instead of solitude, because he will always be with you.
I didn’t realize how long it had been since I had seen your blog. To be honest I went looking for it tonight to make sure I remembered the date. I’ve been forgetting to login to regular Twitter lately. But this blog is one of the highlights when I sign on as we used to say. I’m way behind but I just read the last 3 posts as I’m sitting here exhausted from a shift from work, unable to start my long drive home yet. I’m glad I made it a point to check in here because I have a little better understanding about what is going on aside from the little updates Brandon has been passing me. I just wanted to let you know I’ve been thinking about you, and you guys a lot lately. I feel for you. And we are around anything you need, I hope you know that. This song comes to mind. I had a, let’s just call her a previous friend in my life at one time that used to complain about my music. Specifically she said that my music made her want to slit her wrists. She had a flair for the dramatic which is probably one of the reasons I was drawn to my old room mate Cheryl. Cory remembers her when we all lived together. Anyway… I would argue with her that the Smiths / Morrissey could be interpreted as depressing fine sure, but, for me, I find his music soothing typically. I think the reason I’m drawn to dark depressing themes in music is because I can point to that, and feel that, and go hey I’ve felt that, or I’m hearing something that matches the depth of emotion I’ve had running through me about something. Anyway I was thinking about this song as I was reading. https://youtu.be/5mF4pKSi2SU?si=joCUbvyebjsG_FHj
Hang in there.
The people who don’t understand are the ones who haven’t been there before. They’ve only lived in a bubble their whole lives.
All the hugs, darlin’. If I need anything I’ll for sure reach out to you too. I consider you both very, very close friends.