The Soundtrack of My Life – 8 – High Hopes

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.

Adventures in Adult Babysitting

When I was around the age of 14/15 I made a promise to my mom that I wouldn’t put her into a home. It was the same agreement she had made to her mother, my grandmother. And I wanted so much to keep the tradition alive. Then life became exceedingly complex.

Two weeks before I signed the papers for her to become a resident, she had fallen. It was the third time she had that month, and after the second fall where I had explained if she didn’t use a walker to get around and fell (again) she would move in with me. She flat out refused to use any kind of assistance device and because of it she fell, in the same bathroom my father had fallen in (for his third time that week) and hit his head, causing brain damage and his ultimate death. Every detail of that moment came flooding to my memory. I was livid. So, I sent my husband and brother-husband over to her house, help her up, and take her to our house.

For two weeks I came to a very harsh reality, that she was far worse than I had previously assumed. She can’t use eating utensils, she repeatedly has “accidents,” she can’t bathe herself and can’t even dress herself without assistance. The two weeks that she stayed with us, I had to do all of these things for her. Once they were done she would sit, happy as a clam, in her recliner watching movies. Had she been the only one I was responsible for, I probably would have trudged on to make it work, but that’s not the reality. I also have my husband.

For those who don’t know, my husband has ALS. He was diagnosed a year ago. As it is now, he can do very little for himself. He can still walk and stand, but he requires someone to assist him every time. While my mother was there I hardly got a chance to sit, which is fine, but it was not sustainable. And It was putting a lot of expectation and responsibility on the brother-husband. He may have signed up for my husband, but not some random lady he had only met (maybe) three times prior.

As much as I didn’t want to break my promise, I had to. And even though I have been told, repeatedly, that it was the right decision, all I can focus on is the fact that I did. I am no longer a man of my word. And I hate that.

To get out of that mindset, I sat down and tried to pick out why making such a strong, blanket promise like that is ridiculous. When I made it, I had no concept of adult responsibilities. I was working off the example my grandmother had set, while she lived with us. She was basically my third parent. She did housework, she watched me, she actively contributed. Because of her, I felt confident in agreeing to never commit my mother to assisted living. What I failed to take into account was life. Life is unpredictable and it’s main goal is to try and crush you and those around you. I know that sounds aggressive but when you really think about it, it’s true. Life isn’t a cake walk. It is a series of obstacles we must learn from to continue on to the next set. There is no rest. My mother’s Alzheimer’s is that obstacle. My husband’s ALS is another. I have learned and now we must move on.

On Monday, a month before my birthday, and four days after her own, I dropped her off in a memory care home. The weekend prior, I made every effort to make certain it wasn’t a surprise for her. I wanted her to be aware of the change that was about to occur. But I either failed miserably in explaining it, or she just didn’t understand. Regardless, when the day arrived she was distraught and terrified. There was no escaping the tsunami of guilt that “I just sprung this on her” and abandoned her at her most vulnerable.

The one thing I have learned from my mother’s diagnosis is that, if I ever have kids, I will make sure they know, without a doubt, that if pop-pop goes a little loopy that they should not HESITATE to put me somewhere safe. Even if I ramble on about not wanting to leave my home, I (at my absolute core) do not want them to waste a second debating what I would or wouldn’t want. If I have enough sense in me, in my older years, I will just move in on my own, like my grandmother-in-law.

I know that this is the right thing, and at times I feel it. But getting my heart to understand is something else entirely.

Saying What Has Been Said Before

As of last Thursday, it has been a year since my husband was officially diagnosed with ALS.

As one does, we look back over the journey to see the differences from then to now. What I really want to do is to write this sparkling and profound story with few defeats and many triumphs but I have nothing. In addition to that, I get so caught up into trying to be inspiring that my voice gets lost in the words. What I end up writing feels forced. It feels disingenuous, which is not my goal. Ultimately, it’s not me. I write with my heart on my sleeve, with all my cards laid out for all to see. It’s the only way to be. Trying to keep out the failures and the sadness is a detriment to myself, and no one else.

The reality has put a lot of things into focus, that for so long had been fuzzy. I have suffered most with deciding if my husband was truly “the one.” I always came up with so many excuses to say we weren’t: I was too young; I wasn’t ready. All of this bullshit. I didn’t trust my gut, because it has been wrong before. So instead of enjoying what I have in front of me, I him-and-hawed trying to feel out if it was the right decision. There is no “right” answer. Ever. We just choose a path and learn. Attempting to go back and try another is pointless. There is only forward.

It’s funny, to me, saying all of that because it is the same bullshit that has been told to us over and over again. We just never let it sink because we refuse to listen. We refuse to understand. “There’s always a chance.” Maybe, but maybe not. It’s better to treat life as a “one and done” deal. Thinking that we can get back to reach what we lost is a farce we repeatedly tell ourselves to lull our mind into a false sense of security. “There’s always another chance.” Nope. We only have now.

The beauty of that belief has done some amazing things for our lives. We bought a new house. We moved. We have journeyed across the country, twice. We have seen and done things neither of us thought we could or would do. Yeah, Covid and his disability has made it more difficult, but all of those minor setbacks have paled in comparison to what we’ve experienced.

The only thing that can be truly measured, is the loss of my husband’s independence. He has to rely on me or my brother-husband to eat, to go to the bathroom, to stand without falling. His arms and hands are very nearly worthless from what he used to do. Using a cellphone is near impossible. Thank the geniuses at apple for the voice control features. Without it he wouldn’t even be able to peruse Facebook, text, or make phone calls. Technology is a bane on society, but also a fantastic tool to give one the illusion of normalcy.

I do wish there was something I could add, but there is nothing that I can say that would be any different than from the hundreds of voices before my own.

I will just reiterate that time is precious. Live in the now and don’t hesitate, for even a second. This moment is the only one you truly have. Make it worthwhile. A life of experiences is worth more than any amount of money saved.

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.