ALS

March 1, 2022

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.

December 2, 2021

Midnight Memories

So to set the scene I recommend listening to “Blinding Lights” by Loi. It’s probably the best version of the song and the tone of it completely encapsulates the memory I’m going to share.

The first thing my husband ever said to me was through an instant message on AOL. He let me know that he and Diego were still together and not knowing who he was (and being the annoying teenager I was) I continued on the conversation as if I knew him and what he was talking about. I finally dropped my charade and asked him who he was and it was then that I added him to my buddy list, cchuck77383. From then on I would message him whenever he came online because I just knew things with him and Diego were on the way out.

This all happened at the very end of September 2003 after an abrupt break-up with my third boyfriend. (Who has since passed of stage 4 cancer.)

I was taken by him (my husband) because he happened to share that my ex wanted him, but my husband was not even remotely interested. This made cchuck77383 immediately attractive to me.

I wasn’t a good person then and I know that now… but regardless of what got me to meet with this man doesn’t matter now. I am still here.

After things with Diego fizzled out he agreed to meet me one late night at a Denny’s.

I put on “sleeping beauty” in my bedroom, snuck out my window, and drove across town to meet this stranger I had only ever spoke with online.

He didn’t tell me what he drove, but I knew he had arrived the moment his white mustang drove past me. For the next hour or so we sat in a booth talking, while I watched him nervously spin his silver Motorola flip phone, twitch his nose, and run his index knuckle up his phantom mustache.

For whatever reason he liked me and invited me over to his apartment downtown to watch a movie.

The first thing we ever watched together was Philadelphia. Which, if you don’t know, is the story about a man dying of AIDS. He swears now he had never seen it, but I remember him telling me it was a good one to watch. However he had also just started collecting DVDs at the time and it is highly likely that he hadn’t. I tend to rely to heavily on my own memory. And I am (at times) wrong.

That early morning, when the movie had ended, he walked me to my car and kissed me, wishing me good night. I drove away thinking I would never see him again, feeling satisfied that I got to make-out with the guy my ex wanted but couldn’t have.

Little did I know that this dude would then call me every subsequent day and talk my ear off. There isn’t a day since that he hasn’t. It kills me most to know that his disease will eventually take that from me. I have spoken with him at length ever since then and to think I will have to face a day where I don’t just cuts my gut.

August 30, 2021

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.

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.