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.
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.
Last night it occurred to me that I am back in the ICU waiting room with my mom, delaying my dad’s removal from life support. Except instead of holding off until my cousin and aunt arrive, I’m waiting for someone that will never come. It’s excruciating agony, like a sharp knife being pulled, slowly across my skin.
We were meant to start hospice but postponed the transition because once we do we lose our team of doctors that have been with my husband since he was diagnosed with ALS. In addition, we’re hoping to get a substantial supply of the medication for the disease. Hospice will not cover that drug. For us to pay out of pocket it would be $690/bottle. My husband is handling those details, from his eye-gaze device, so I am unaware of the status. All I know is that Friday is the day we told them we would make the switch.
His condition is worsening. His speech jumbled and incoherent, at times. Where before he would sleep at the drop of a hat, now not even pills will help. He’ll sleep for an hour or two and then be up for rest of the night and into morning. And where previously he would take Xanax once a month, it has now become a twice a day dose.
Every time I go into our room, and he is sleeping, I just stand in the doorway and stare at him. My eyes focusing on his chest and face for signs of movement. If he were to wake up it would be incredibly creepy. It would be for anyone, really. I do it because I am seeing if he is still breathing. That’s typically how someone with his disease passes, in their sleep.
The other night I was talking with my husband through text message (kind of ironic that our relationship started with text messages…) as we lay in bed side-by-side, his breathing mask over his mouth and nose, discussing hospice. Somehow we started talking about him dying in the house and he said he didn’t want it to happen here. I replied, “I don’t think that you habe any control over that. Unless you’re moved into a facility. And that is something that will not happen.”
So, I sit here and wait… never knowing what the next moment will be. Not knowing what to plan. People are asking me to plan things months in advance and… These other stories, plans, desires, are just the incoherent hum of the television in my “white waiting room.” A world exists out there, but it does not for me.
The beauty of this song is that it perfectly encapsulates the person it represents in my mind. It has this very high energy, happy beat that gives the impression that the lyrics encased match it’s tempo. When you really look at them they are not. They speak of constant struggle and strife while always maintaining an enthusiastic demeanor. But they’re sung in such a way that it tricks the casual listener. It’s only those who truly listen that will know.
Let us also not fail to mention that it is also an awesome song choice to play in Beat Saber.
Tony is someone who seemed to magically appear out of the ether. As if he was called from some mystical place to my and my husbands world. I had had no idea that he and my husband had been talking. It wasn’t until late one evening, as Charlie and I were relaxing in the hot tub, that he informed me that someone was coming over to join us. My skin prickled with excitement because I thought he was coming over for… uh… other reasons besides to have a couple drinks and soak in the warm water.
He arrived, stripped down to his birthday suit, and hopped in. We spent hours talking, and much to his and my husband’s dismay, I lingered much longer than they had anticipated. Half drunk at 2 in the morning I had to be an adult and get to bed. It was a work night, and unless I wanted a massive hangover it was best for me to skedaddle.
Reluctantly I went to bed… Then I woke up with a start and looked out the bedroom window and saw the two having a very intimate time. Upset I packed up some clothes and headed over to my mother’s to sleep in her spare room. My husband called to inquire my whereabouts and I said I just had to get out of there.
Tony left, drunk, because he felt like he had upset the balance and didn’t want to be involved in the drama.
After some thinking I realized why it bothered me so much. It wasn’t that I had seen them together. That is one of my weird sexual kinks. Why I got upset was, like I had mentioned earlier, I had assumed it was meant to be a group effort. Which it was not. There was a lack of communication on my husband’s part. Had I been informed, it wouldn’t have been a thing. I would have also gotten way more sleep than I ended up getting. This episode was merely something we could learn and grow from.
The next day I found Tony on Scruff and apologized. I told him that there was no hard feelings I was just drunk and being weird. I didn’t want this episode to ruin anything between him and Charlie.
It surprisingly did not.
He came over the next night and brought along his PS4. He had the whole VR set-up and we ended up playing Beat Saber, this ADORABLE little robot game, and one based around the Paranormal Activity movies. It was a blast.
Tony invited himself to one of Charlie’s appointments at Cedars-Sinai. It was the follow-up nerve test to see what change their was from February. As it turns out, there was a lot. The next appointment that Tony invited himself to was the one where the doctor casually dropped his diagnosis. However, my husband did not pay any attention. Because, when we read it a couple days later on his patient-portal synopsis we both had a breakdown.
That night Charlie, Tony, Josh and I all hopped into the hot-tub and drank. What else do you do when you’ve been given news that you have a terminal illness?
For lack of any term, I have stolen the one coined by the Mormon polygamists. Instead of sister-wives I call Tony my brother-husband. I would do anything for him. He very quickly became a huge part of Charlie’s and my life. And one I wouldn’t and couldn’t do without. Everyday I thank the universe for sending out the call, or answering it, and having him arrive.
As it turns out, he has been in our orbit, but as a secret shadow planet that only comes into view every millennia. He had attended many of the offensive comedy shows I had been in, he LITERALLY worked down the street from me (he and his work mates used to watch me bizarrely pull up into a parking space in front of their shop and smoke cigarettes) and he knows so many of our random acquaintances. That last one is common in a small town, though. So it isn’t that out of the ordinary.
I chose this song mainly because it was a repeated choice while playing Beat Saber in our old living room. (That and “Greatest Show.”) It also matches how I feel about him. He always has high hopes and is such an optimistic person. Always. Every once in awhile it cracks under the exhaustion of trying to maintain the show. But with a little intermission he is right back to it. The only thing in the song that doesn’t match is he is one in a million.
P.S. I will eventually delve into more obscure songs at some point in time. I feel like everything so far has been “Top 40” and I am better than that.
P.P.S. I will also eventually catch up to the proper order. I’m a blog behind in my goal.
The Journal of a Jaded Josh 