December 7, 2023

A handful of confetti and a kiss on the head

The glasses of grief truly distort one’s perception of reality. At least it has for me. Suddenly all I see around me exists in this moment only, and we must be grateful for it because it could be gone in an instant. I dare say that this is how we should view the world always. Only then can we appreciate what it is we have.

Today is my husband’s birthday. In all likelihood this is his last. What am I doing to commemorate his 46th year on this planet? Nothing. Much like our anniversary it will pass by without any significance. We will sit at home and just exist.

I hate that I have planned nothing. I just feel guilt like I’m letting him down. But when I try to think of a plan I am met with all the limitations to what he is physically able to do, regardless of his wants (which are none) that I become overwhelmed and stop.

I wish I could say that this is a new character flaw but it is in fact packaged with this model. It’s why I procrastinate.

I wish I could remember the first birthday I spent with him but for the life of me I have no memory of it. The most likely scenario was that he worked and then we went out to dinner where he would have paid. At the time I was a selfish 18 year old boy with no job. I probably ended up giving him a sexual gift in lieu of anything meaningful.

Ugh… I have turned this into a “poor me” post. I need a new perspective. I’m not the one dying here. Therefore I shouldn’t be so miserable.

November 29, 2023

If there is no flight, then we shall fight

I never truly understood the concept of “fight or flight” until recently. And when I say that, I mean within the last two weeks. Prior to two therapy sessions ago, my comprehension of the saying was: either “fought for their life” or “ran away to survive” in life threatening situations; like being held up at gun point or rape. It never occurred to me that these moments could occur at any time. It’s a trauma response.

The last few months I have been at home. It began at first as a way to cope with the panic and anxiety I had that my husband was starting hospice care. Since then I have not left the house. For the most part, I stay at home and care for my spouse.

At the start of October I returned to work doing miscellaneous jobs from home, only leaving for (at most) 2 hours to do an inspection. It started off fine, but it has since become a sort of prison. I can’t escape when I want and I can’t do what I want because I have my husband who needs me. The worst thing that could happen is for something permanent to occur while I’m gone.

It is here where the “psychological response” became vividly clear.

My tendency is to run away from situations. I’ve done it since I was a kid. If I was feeling uncomfortable I would just escape to my room, go on a walk or just drive for hours with no destination. Now that I cannot do that because of circumstances and my own unwillingness to leave for fear of what may happen… I have become angry. I fight, but not in the way one would expect. I don’t pick fights verbally or otherwise. No. I just get cold, quiet, passive aggressive or redirect it into something unrelated. It’s the way I alleviate the feeling.

Lately I have started to “fight” with my husband. I try, as quick as I can, to remind myself of the reality, how I really feel. Most of the time it works. Sometimes… it takes a little bit. I will bring up long since dead fights, grievances or misdeeds to justify my rage. Essentially I’m picking a fight. Fortunately it’s just with the shadows of the past, in my own head. The guilt I feel after these response moments is so heavy.

I have yet (and universe willing) have done so only in my head. I know, without a shred of doubt, I would forever hate myself if I were to ever let my thoughts leave the safety of my mind.

There is no conclusion or real resolution I can impart. Just wanted to share this clarity in the hopes of helping someone else. Maybe another reader has yet to get the basic principle. The one that sounds so simple, but lacks any specifics to its deeper meaning. Well, it’s an oversimplification for me at least.

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.