November 15, 2023

Wallowing in my feels

The word overwhelmed does not accurately describe how I feel. If anything it drastically undercuts the reality of my situation. Every day I wake up and wonder if this morning is going to be the one where I find my husband has died in his sleep. When I see that he hasn’t, I pretend like everything is normal when it is anything but considering I have to do everything for him, on top of caring for myself and keeping everyone sheltered and cared for. Then to top all of that off because the government has decided to keep interest rates so high, I have next to no work. So there is little to no money coming in. What money I received as inheritance is now dwindling away. Leaving me with nothing.

Then come the emotions. I feel trapped in my life and I want freedom but that would mean I wish my husband’s demise. Which only makes me feel guilty and horrible for even having these thoughts cross my mind. I just want to scream.

I would never wish this on anyone. It is truly maddening. At times I feel like I am being punished for something. Like I wronged someone somewhere.

The Christian teachings of my youth say it’s god punishing me for turning my back on him. And all I can think is what kind of “loving” god punishes you for not WORSHIPPING him. Which makes this high power sound like a sociopath.

I feel like I am just an observer in my life. I’m not living. I’m surviving, making it just in the nick of time.

November 1, 2023

Twenty Years

Today is my husband’s and my 20th anniversary of being together and 10 year wedding anniversary. It’s strange to think of that length time, because it does feel like it but also like no time at all. Almost like I blinked and it was gone. You know, all that cliche bullshit. Unfortunately it’s true.

I can still remember every detail of the day we met. It started out as a failed hook-up (I say that because we didn’t have sex, we talked) and turned into what it is today. Our wedding day is equally, if not more pristine as the first memory.

I just want to cry… usually for something momentous you have a big party, go out to dinner or buy lavish gifts but I have done none of that. I will do none of that. My husband would hate every second of it. He’s gotten to a point with his disease that he’s embarrassed by his appearance. On top of that he doesn’t even eat anymore, but instead gets nourishment through “vanilla flavored” shakes that we pour into a tube. In regards to a gift… I know that even he would say “why would you get me one?”

I hate this. I hate all of it.

With ALS, no one knows the time-frame. For some it’s 3 years and for others it could be years. Stephen Hawking lived for 55 years with the disease. Before I witnessed the rapid speed at which his disease progressed I knew, without a doubt, he would make it here. To this very day.

That was 3 years ago.

This could very well be the last anniversary we spend together and… it’s going to be nothing. I’m such a fucking failure.

October 27, 2023

Maudlin Midnight Musings

Tonight, like I do most days, I started to wonder what my life will look like without personal chaos. Since July 2019 it has been spinning out of control. My dad died the same week my mom was diagnosed with Alzheimer’s, which was only three months prior to my husband going on medical leave before ultimately diagnosed with a terminal illness a year later.

This entire time I have just been pushing through, focusing ahead, prepared to meet the next hurdle. And when this race is all over… what then? What will I be like? What will I do?

Already, I am not the man who started. I have been shaped and molded by this grief. It has destroyed my mind. My memory is shit. My problem solving skills are very rough. I don’t want to go back to that person, because I do believe there has been growth and development. I just want to stop losing aspects I once treasured.

My life has narrowed down to a near distinct point. I just exist for another person. To keep him going. Keep him comfortable; happy. To carry him toward the end.

There is a world outside of the home that I now spend 90% inside of, but I seem to care less and less about it. Or anything else really. Social media has become a side note to everything.

And then as I start to look up, past the mess, and toward the distant horizon I am overwhelmed with guilt. How could/can I think of a life without someone in it. How could/can I be so selfish? I know life does/will go on… but do I have to think of that now? As the guilt sinks deeper into my body I move to other thoughts and vices.

October 20, 2023

Memory Polaroid

Tonight I had a flash of this beautiful memory of my husband. It was from our stay in Rochester, while getting his “second opinion” with the Neurology department at the Mayo Clinic.

While I had been working at my minuscule hotel desk, he went to Target and bought a folding card table so that we could play Magic the Gathering (MTG) while on our trip. The card table took up the entire empty space of the room but we made it work. He used this blue and black rogue deck against my red and green deck. He ultimately won by a sweet combo that I remember just multiplied his faerie rogue tokens to an insane level and wiped me out in one turn.

While this doesn’t appear to be at all significant, it truly is a remarkable moment for me. My husband was never one who liked nerdy things. I had tried to get him to play MTG when we first started dating but he wasn’t interested. Then when he did invest in buying a deck to play… was the same night he found the proof that I was cheating.

Sitting in that room, playing a nerdy game with him is such a bright spot in the sea of growing dark.