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.

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.

The Struggle to Breathe

We are nowhere near the time that my husband has left me. That moment sits as a tiny spec on the horizon of my timeline, but, as with time, we march ever toward it. And knowing that it’s there, rots me from the inside.

My grief of the situation comes and goes. I have gotten to a place where I can handle it when it does exist in my headspace. Those are the days I ugly cry in my car, hoping no one in the vehicle next to me happens to look over. I am very unattractive when I cry. I literally struggle to breathe, as if every breath becomes thinner and thinner and I am just gasping at air. The only other time I have experienced such tears was the time my husband and I had a brief separation.

Before we became polyamorous we basically just cheated on each other. Our relationship had turned into lies and secrets and neither one of us had the guts to be honest. The truth came out when I downloaded Grindr to cheat. I caught his profile at the end of our street, on his way to visit his dad in Palm Springs. Over the course of his brief trip I watched his account like a hawk. I was obsessed. When he returned I was honest. We struggled with things after that, and at one point I asked him to leave. He went and stayed in a hotel for a few days, and that morning I cried much like I do now. I could barely get out of bed. If I attempted to get dressed for work, I would start to cry again and my legs would buckle out beneath me. It was one of the worst mornings of my life.

At the time I didn’t understand these tears. I have cried before but never like this. And I always questions their sincerity. Even now I wonder if they’re real, or if it’s just because I am expected to feel something. I think I’m the only person who doubts such things.

After his return to our house our relationship changed. We started to communicate and eventually the truth about his infidelity came out. Instead of being angry with him I was overcome with relief. Finally, I wasn’t the worst one in the relationship. The one who cheated on an honest, dutiful, good man. At least that was the narrative I told myself, because I had repeatedly asked him if he had. He would always tell me that he hadn’t and I would feel ever worse. When I finally got the truth it felt like I could finally breathe. A gigantic weight had been lifted from our relationship and my shoulders. Since then our bond has never been stronger. All it took was the truth, and the inability (both of us have) to give up.

It seems to track that once we finally move into a better place in our marriage he would be taken from me. Even now my eyes fill with tears. I just want to scream. I want to take a sledgehammer and destroy everything in my path until I am too weak and too tired to carry on. There are days that I literally just want to die. Losing my father, my mother dwindling due to Alzheimer’s, and my husband to ALS is just too much sometimes.

Just know, I am too much of a coward and (bizarrely at the same time) too conceited to take my own life. That being said, just know that if I were hit by a car I wouldn’t try and hold on.

Angerville, Population 1

Within the five stages of grief I am currently at anger, and most likely will be here for some time. How I know is I am usually an angry person. It’s a fact that I don’t know how to show any other emotion. I have surmised it is because I get this feeling that by showing it, in place of sadness or confusion, I don’t look “weak.” I guess that’s the only time I am quintessential male.

I was never taught from my parents that any emotion is unacceptable. On the contrary, my mother fostered the idea that all emotions are welcomed and should be released. My father never gave any inclination that any of my feelings were not valid. So, this concept wherein I refuse to look “weak” is kind of bizarre, all things considered.

Generally, I am just angry about everything. There is no specific topic that draws my ire. It’s anything. Part of me wishes I didn’t feel that way, but the other half doesn’t want it to dissipate. In my aggressive feelings I receive a weird sense of control, while being nowhere near it.

I will say, the one thing that does have me upset, is my husband getting a second opinion. While I was initially on-board (and still am) I have become increasingly concerned that we are wasting our time. Unlike my husband’s family, I do not believe the doctor is incorrect in his ALS diagnosis. I wish it was just a vitamin deficiency, but I have accepted that it isn’t. In doing so, I have picked my pony on where we should go to next, and for me that’s treatment, not in following this foolish path to a fantasy land that is merely a side route to the ultimate destination.

There is no cure for ALS. There are only scientific elixirs that delay the inevitable. The sooner you get on them, the more likely to slow it’s progression. The decent into it brings about paralysis and the inability to breathe and swallow. I am uncertain if speaking is in there (I have stopped researching because I can’t deal with the gravity of his illness) but I imagine it is. Not being able to go to him for advice is going to cut me the most. I go to him for his vast knowledge and because he knows better than anyone how to soothe “the beast.”

The hardest part is I can’t share these feelings. I feel like I am burden to him or making it worse. I don’t want to bog down the time he has with my inability to cope. He’s doing miraculously, or at least pretending better than I. For being a somewhat trained actor, I am a horrible one in real life.

I want the doctor to be wrong, but life is clearly not about giving people what they want. Example, this wouldn’t be happening at all. He could have been like all the other people who’ve had the weight-loss surgery and gone about living his life as normal. Nope… he gets to have his ability to do normal tasks taken from him. (It should be noted that there is no scientific evidence that one lead to the other, it just appears that way from an outsider’s perspective.)

I just hope we’re not wasting time. In the end it can go either way, really. Either he starts the treatments and then we find out it’s just the deficiency, or he waits and the diagnosis is reconfirmed. Whichever it ends up being, the process in getting additional review is agonizingly slow against a disease that isn’t about taking it’s time.