June 10, 2021

Plan to not have one

It would figure that the day I sat down and actually mapped out our upcoming road trip that my template would get tossed aside. It’s the irony of my life. However, while it is irritating it is for the better.

We have been anticipating this road trip to Nashville since March. (Maybe even February, that whole memory thing though.) Initially, I had outlined a road map with one route but that got set aside because the husband wants to do two. And when the boyfriend joins us, mid-way through, he didn’t want to do the “southern” route. To be frank, I don’t want to do that one either. It’s all Texas. No offense to Texas, but the lone star state in mid-summer… hard pass.

So it was decided that we would do the southern route to Nashville first. That way we could make a stop-off in Dallas to visit the brother-huband’s close aunt. Now, that isn’t even happening.

The husband opined that there was a reason we were dragging our feet. We knew subconciously that it was going to change. That may be true, but I chock it up to us being lackadaisical about any sort of planning and preperation. Charlie just flies by the seat of his pants. I need (at least) an outline. I used to be one that needed a specific plan, one in which we stick strictly to and do not deviate from. That type of mentality does not mesh well with my husband’s typical approach to anything. It’s probably the reason we had such a hard go in those early years. I was trying to force him to do it my way and ended up frustrated at him when he didn’t.

I have since adapted. My husband and general life has taught me that plans are a joke. They typically never work out, and usually the bright spots are ones you cannot plan.

We’re still going on this trip it has just been bumped.

The reason it was moved is that we need to be in Los Angeles for the first dose of the ALS trial drug a week after we were scheduled to set out. I really wish they could have given him the first dose on Tuesday, but they needed to get him vaccinated for meningitis. There is a high risk he could contract it while on the trial drug. He already has ALS, let’s not add to the list.

Plus, it works out that I get to be there to see how to go about doing the injections. This way they can show me and the brother-husband how to do the injections and give us the medication we need going forward. (Side note: I fu-hucking hate needles.)

I wish I could remember the name of the one he’s taking, but (again) I was in two places at once on Tuesday and didn’t pay any attention. What I do know is that the potential of this drug (if he’s in the 75% who get the real medication) is will slow the progression and has a possibility of reversing some of the side effects of ALS. While I hope with every fiber of my being that it can undo some of it, I am not naive. In these situations it’s best to be realistic. Hope for the best, plan for the worst.

June 9, 2021

Breaking Through the Fog

I find it quite humorous that after writing a post on how I have this uncanny ability to remember tiny details of memories I have done the opposite. My memory is shit. It is almost as if my brain said, “Oh, is that a problem? Good luck, bitch. I’m out.” Since then I struggle to recall anything. It genuinely sucks and stresses me out like no other. (Well, it’s comprable to the stress I have when I lose my balance.)

The cause of this is trauma. I have mentally and emotionally been through a lot (selling my house, buying the new house, moving, my husband’s ALS, my mom’s alzheimer’s, work, the state of our country) that it’s really my brain trying to protect itself. At least, I hope. Otherwise, this may be permanent and that bothers me.

Last night, my husband told me that I am not present anymore. That whenever I am around I am only half there, the other is somewhere entirely different. Upon my own inspection, he’s right. (He usually is.) Lately, I do drift mentally. At times I will genuinely ask someone something they had just told me. It’s as if my brain heard it, but failed to move it into a permanent file. Other times I’m trying to do multiple things at once and keeping myself from enjoying the present, like when I was playing a game of magic with the boyfriend. I was watching tv, playing on my phone, and playing the game. Even though I won, I don’t really know how or why.

In an effort to combat this “adrift” mental state, I’m going to try and limit doing “too much” all at once. I need to be focused on individual tasks (for the time being.) Maybe then I can get my mind less foggy.

In regards to trauma, I just need to accept that this is life. There is no sense fighting against what is actually happening. There is so much power in acceptance, because then I can focus on the things I do have control over. Standing in place and wishing it all away is wasting precious hours that are better suited for making life bearable.

May 24, 2021

For starters…

I need to write more. For a few reasons. One, to keep my skills sharp. Lately even my texts have gotten off and that bothers me like no other. I hate sounding like an idiot.

Two, It keeps me sane. I have been described as a very “cerebral” person and that could not be more on target. Living in my head is my favorite past time. Thinking about everything that is going on in my life ends up turning into toxic sludge which poisons my thoughts and actions. Writing them out extracts all of it and leaves peace

Three, I have a story to tell. not many people do. I use to worry I never did. Maybe that’s why all of this happened. My desire to be “interesting” caused all of those around me to suffer. Which lends credence to the old saying “be careful what you wish for.”

I know that, I didn’t really cause these things to happen (my dad’s death, my mom dying of Alzheimer’s, and my husband dying of ALS). Yet there is also the belief that the words we speak actually effect our lives.

Be careful what you think and feel.

With perseverance I will write more. I have to.

May 15, 2021

Again with the rage?

I have written the intro to this blog more times than I care to admit. And each time I come to a limit of two sentences before I get irritated, give up and erase my progress.

My intent was to vent about my ever growing rage at life, but I can barely compose my thoughts once I get passed the “I’m angry.” Instead it just sounds like the ramblings of a mad man so unhinged his thoughts of “retribution” drifts into dark waters, and that is a person I do not want to be. Unfortunately though, I am him.

I am angry. And everyday it grows because I have absolutely zero control of my life.

In the logical crevasses of my brain, chimes the response: “but you have control of how you react.”

I thoroughly loathe that answer.

The anger I feel, gives me the “sense” of control. Like I am accomplishing something. Yet all it does is agitate me further. And the cycle begins anew.

My husband told me once that the only thing I know how to feel is anger. It was the first time I was ever presented with that, obvious, point of view. Even now as I try to pick it apart and offer some logical conclusion, the only thing I find is that it’s my sadness masquerading as anger. Feeling sad is weak. And I don’t want to be weak.

Yet, I say that, and do believe it, however I am also the man who won’t stop himself when I begin to cry. I let my emotions flow when they are there. I am quite the conundrum and confuse even myself.