ALS

December 7, 2022

The Soundtrack of My Life – 43- Traveller/When I’m With You

Today is my husband’s birthday. As one does with a anniversary of life you tend to reflect back on everything. It’s almost like climbing yet another peak and looking back to see where you’ve come from. For me, I’m more excited that I get to spend one more with him.

For the occasion I have added songs by Chris Stapleton. He’s been Charlie’s favorite singer/songwriters the last few years. For Christmas last year (or maybe for his birthday) I bought him tickets to see him in Denver, Colorado. The idea was to turn the whole thing into a fun road trip that would ultimately end with the concert. That, however, was ruined by my mother losing her ability to swallow and Chris Stapleton getting Covid prior to the show date. The journey ended up being a bust even though it was fun until it wasn’t.

My plan for this holiday I intend on buying him tickets, again, to see Chris Stapleton, but the bitch of the situation is all the ADA seats are sold out. Really? There are THAT MANY handicap people in the world? Odd… I don’t see very many people in wheelchairs. (That is an ignorant statement, by the way.) Stranger enough is that they all decided to convene at this one concert in Arizona. Sorry, I’m turning this into a rant and I don’t mean it to. The way people abuse the ADA options is mindbogglingly infuriating.

I chose Chris for the above reason (obvs) but also because these songs always make me think of my husband. At one time, before we knew his ALS diagnosis, we would frequent a bar downtown. I would inevitably commandeer the jukebox, playing all the mellow shit I wanted. I am not one to wait, and I will pay top dollar not to listen to some dumb song someone think “slaps” and kill my vibe. Every time I would play “Tennessee Whiskey” first and then, a couple others for variety, “Traveller.” When it would come on the speakers, my husband would gasp and look at me.

“Did you put this on?” he would ask.

“Of course, Punkin.”

The song below… I included it because it was one he “dedicated” to me. It makes me cry every time I listen to it. I would have put it at the top but, it hits entirely too hard. It’s also extremely depressing. Birthdays are meant to be fun! However, I would be remiss to not take this opportunity to share that one with you as well. The sentiment behind it is beautiful.

I really hate that I don’t remember the first time we got to celebrate his birthday together. I’m sure I did something shmaltzy as a gift and then ended up having sex, because aren’t I really the gift? I know I didn’t take him out to eat because I was a jobless, high school senior at the time.

I have tried every year since to make my gift better than the one before. Primarily because he always does so much for mine. However, I’m running out of options at this point. Next year I’m going to have to find a cure for ALS.

What makes everything even more difficult is my husband’s distaste for his own birthday. I think it stems from the stress he felt for his mother, doing it for him, alone, in his youth. It goes the same for Christmas. This time of year is always so stressful for him. He’s not one to celebrate. It wasn’t until he owned his own construction company and was doing well, financially, that he got into the Christmas spirit.

I had wanted to do another big birthday event like we had last year, but he wasn’t up for it. As he progresses he has found that people tend to spend more time talking and paying attention to him. He doesn’t like it. He’s never liked it. But with the fact that his speech has gotten to a point where people have a hard time understanding him it makes it even worse.

Tonight will be a small affair. Just dinner from one of his favorite places with our little polycule and his family.

I just wish I could think of something better than cookies and candies for his gift…

March 4, 2022

The Soundtrack of My Life – 9 – Dueles

The poetry that happens in life is chilling sometimes. This song is one of those moments for me. It is absolutely beautiful, and the lyrics are… I will post the English translation below.

After my husband had his weight-loss surgery, he was invigorated to better himself physically. He started putting effort into the way he dressed, skin care routine, and even started to go to the gym daily. In that vein my husband had gotten it in his head that he wanted a facelift. He longed for a more prominent jawline and chin. He has a little one but mostly his face goes right to neck. This is a physical trait that runs in his family. His grandmother and aunt have this facial feature. As with most things he becomes obsessed with, he did his thorough research to find a place that could and would do the surgery at a low cost but with optimum results. That search brought him to a surgeon in Tijuana who was highly awarded and recommended.

After a photographic consultation, he scheduled his appointment and paid a deposit to hold his spot.

Then Covid happened.

He was forced to stop going to the gym and his surgery date was pushed out 6 months to allow the global pandemic to get under control. Oh, how optimistic we all were.

During that time I worked from home and he met and brought Tony into the fold. Overall pretty good times.

The day of his surgery we drove down to Mexico. The entire time, both of us had this overwhelming sense of dread. It draped over me like a cold, wet blanket. My stomach was a tight, softball ball sized knot. I couldn’t shake the feeling, and it only got worse as the day went on. At the time, I chocked it up to me being nervous about dropping him off at the hospital and crossing back over the border on my own. I’m sure I would have messed it up or been kidnapped. I mean, I’m so abductable.

Then there was the moment when he tripped on the cobblestone sidewalk and slammed, chest first, into the path. I could barely pick him up. At the time, whenever he fell it just freaked me out and filled me with so much anxiety. (It still does.) Luckily he fell right outside a farmacia, so we purchased some stuff to clean up the few scrapes he acquired in the fall.

After that, we went to his appointment and then immediately checked into our hotel. Covid restrictions were in effect, and I just remember walking through a mat SOAKED in sanitizer. I also remember, as we were dining in the hotel café, I made one cough, neglected to cover my mouth, and one of the servers looked at me with wide eyes and terror. What little Spanish I know does not include: “Don’t worry, I don’t have Covid. I’m not going to infect you.”

After dinner we returned to our room and were relaxing on the bed while watching whatever English television program I could find. For the life of me I don’t remember what it was. All I know was I was settling.

Charlie sat back perusing his phone and it is then that he perks up and says, “They updated my patient portal.”

“It says I have motoneuron disease.”

“What’s that?” I said, and grabbed my phone.

As I read the description provided by my google search results, every ounce of warmth drained from my body.

In a panic Charlie attempted to call the doctor, but got only his voicemail. It was 9 P.M. so it makes sense why he wouldn’t. So he shot him an email.

The two of us poured over more websites. I texted Josh and gave him the news. He read all he could.

“I hope this isn’t true,” he texted at some point.

The two of us started to cry. I snuggled up next to Charlie and held him as tight as I could. At one point, in a weird knee-jerk reaction, I ripped off my and his shirts and held him against my chest. In my death and dying class I had learned that skin-to-skin contact is the best way to heal emotional pain.

“I just want to go home,” he croaked out.

“Me too,” I had said.

We packed back up what little we had pulled from our bags and checked out. The front desk was confused but obliged. They ordered us a taxi and we waited out in the parking lot.

When we got into the car this song started. Through the entire length of our journey back to the border it played, setting the most somber note in the backseat. Neither one of us spoke. I couldn’t bring myself to say anything or even think. I knew if I put too much focus into it I would breakdown and I wasn’t about to be another statistic of some bitch sobbing in the backseat of a cab.

We crossed back over the border and hoofed it to the car in record time.

On the drive home, my husband made unnecessarily cruel calls to his sister and mother telling them his diagnosis. He delivered the news without any delicacy or social finesse. Neither of them broke down on the line, but we were later informed that both were devastated.

I drove the entire 4 hour drive home in about 3. When we got to our house we fixed ourselves some cocktails and hopped into the hot tub. We spent the rest of the night listening to music and getting unbelievably hammered.

The next night as Charlie and I sat alone in the hot tub, he looked me dead in the eye. Tears were running down his cheeks, his eyes red, as he implored me, “When the time comes, promise me you will help me go. When I’m ready.”

My throat tightened, along with my face muscles, as I hesitantly nodded my head.

When you were together with me,
That light was celestial.
What more could I ask for?
I found the happiness.

Without notice, we left our paradise,
and now your memory makes a shadow to my heart.

Today marks the month that you still don’t see me.
You went, nothing more,
You gave up on loving me,
Oh, and how you hurt!

While I think on you,
And in that I lost it,
I would like to avoid
To see me allowed me to love you,
For to lose you,
And you hurt me,
Oh, how you hurt!

The bumps on the skin,
They leave marks and after they leave.
They go, they go, they go,
But you broke me in two,
And I can’t find repair.

Without notice, we left our paradise,
And now your memory makes a shadow to my heart.

Today marks the month that you still don’t see me.
You went, nothing more,
You gave up on loving me,
Oh, and how you hurt!

While I think on you,
And in that I lost it,
I would like to avoid
To see me allowed me to love you,
For to lose you,
And you hurt me,
Oh, how you hurt!

Go to be free and to be happy.
Already give the same here.
With me is someone I knew,
It is a stranger and the pain let go.

Today marks the month that you still don’t see me.
You went, nothing more,
You gave up on loving me,
And you hurt me, you hurt, you hurt.

While I think on you and in that I lost it,
I would like to avoid
To see me allowed me to love you,
And you don’t know how you hurt,
You hurt,
You hurt,
You hurt me,
How you hurt!
https://lyricstranslate.com/en/dueles-hurt.html

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.