The waiting room

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.

Homosexuality U-Turn

It is strange how a piece of news, totally unrelated to one’s life and story, could cause such a visceral reaction in oneself. The other day I got news that a close acquaintance of mine has decided that he “no longer wants to be gay.” He discovered this new feeling about himself after having been married to his high school boyfriend (and only recently got divorced from), after go-go dancing at multiple gigs, into pup play, having an OnlyFans for a short period of time, and then diving headfirst/balls-to-the-wall into a new relationship with a mutual friend. The mutual friend said he woke up at 1 A.M. to find that the “ex-gay” had left. The reason he gave was he didn’t want to be gay anymore.

I want to point out that all of those things he’s done are not bad. As long as he wasn’t hurting anyone (other than himself, apparently) then there is nothing wrong. Live your life, gurl.

I am genuinely dumbfounded. I have this whole tirade I could (and previously did before I deleted it) about religion and the toxicity it creates, but I chose not to. Just know I loathe religion of any kind. Faith should be a personal, spiritual journey where one opens their heart and mind to what could be out there. Yet, instead it is used as a means to control the masses. I am not about control.

After some lengthy discussion with my BF I discovered that this friend has always wanted a relationship with his parents. He doesn’t have one because of his “sinful” life. And when he had started dating this mutual friend, he got back into church and I think it all snowballed from there. But considering who he was dating, I’m wondering if he was just spinning out of control and is in the midst of an identity crisis. (I mean… clearly.)

Focusing on just the parental relationship aspect, this unlocked all levels of trauma for me. When I came out to my mother it was absolutely not received well. At all. My mother legitimately did not speak a word to me for 3 months and chose to pretend I did not exist whenever I would happen to occupy her orbit. At some point my mother softened and eventually progressed to the point that she signed my marriage license and would refer to my husband as her son-in-law. I loved that, however fleeting it was. My mother’s dementia took her mind back to “pre-acceptance mom,” where she was a homophobic cunt. (Sorry, mom, not sorry.) She refused to live with me because we were gay. She would repeatedly ask me why I never had kids or get married. It sucked. So much.

Hearing him make this “choice” is disheartening. He is choosing to forego his own joy to possibly have a relationship with someone who has ALREADY SHOWN that his feelings and thoughts are not valid. She wants a fake him, not the real thing. This hurts my heart for him. At least I had a moment of acceptance before it was ruined. He’s never had anything.

Looking at all the facts: what we can see and experience, this is it. We just have this moment. Right now. We are not guaranteed anything, other than it will not last. There is no proof to an after life. Nothing concrete. (However there is more proof to reincarnation than an afterlife.) To throw one’s one opportunity for joy away to please some uppity cunt who can’t get over her own brainwashing is some of the dumbest shit. Life is a journey and sometimes not everyone is going to accompany you on it. And that’s okay.

Panicworks

It’s late and I can’t stop thinking. My body has decided to go through “anxiety drills” and I keep having short and intense panic attacks. I wish I could say that I don’t know where they’re coming from but I do.

My husband has drastically declined these last couple months; ever since he got the feeding tube. We had gotten it as a precautionary thing but it just feels like we hit the gas on his ALS.

We had a big family trip to Las Vegas planned for the 18th. However my husband canceled those plans tonight because he doesn’t think he can physically do it. I don’t blame him. His speech and breathing have gotten bad just these last few days. At times I can barely understand what he’s saying. (It’s like my mother’s Alzheimer’s all over again.)

Just a couple weeks ago we were having a preemptive conversation about him maybe getting a breathing tube (trach). During this he was leaning towards doing it, but after his doctors appointment he has decided not to get one. If he were to do that it would require (literal) 24/7 care. The brother husband and I would need to take classes for his care. My husband wouldn’t be released from the hospital unless they felt that we were competent enough to handle it.

My husband already feels like a burden as it is, so once they told us this I already knew his answer without having to ask.

I’m not ready to lose my husband. I’ve known that the ultimate day was just over the horizon, but even with all the preparation it still destroys me. I can’t imagine a life without him present. Without his impish smile when he does something sinister. Without his advice, his words. He is the ultimate “Josh Whisperer.” (That’s me by the way. I’m josh.)

I just have to keep reminding myself that we’re not there yet. It hasn’t happened.

A Eulogy of Sorts

It’s taken me nearly a week to process the news that my husband’s best friend and close family friend took his life last week. At first all of us were numb to it. The notion that he would was never in question. It has always been a “when.” It’s a dark an unfortunate truth, but real nonetheless.

I didn’t start to feel sad until I drove through his old neighborhood this morning, in a tiny pocket of homes in the north side of town. I remember going there once with my hubby back when we had just started dating.

The first time I had ever heard about Phil was during our second “date.” Nothing noteworthy or grand, it was just a late-night drive up to his dad’s cabin, about an hour north of town. At the time my husband was a truck-driver and had odd hours and infrequent days off. Me being jobless, still in high school (senior year), I was able to meet up with him whenever he could. We hopped into his white Mustang and drove winding back-roads to this little place in the woods.

At one point during our drive, my husband started chuckling to himself.

“What is it?” I had asked.

“It’s nothing.”

“No, what is it?”

“You’re going to judge me.”

“I doubt that.”

“Okay,” he had replied and then proceeded to drop, “I fucked my friend’s wife.”

I was stunned. “Okay… I’m going to need more.”

At the time my husband’s best-friend was heavily into meth. This event had played out while all of them were drunk at Phil’s place. Charlie was passing in and out of consciousness on the bed, and both Phil and his (ex)wife were high on meth. Instead of her husband satisfying the drug induced urges, because Phil was obsessively searching the internet for parts to a VW he was working on, his wife took advantage of my drunk husband. The whole ordeal is fucked up when you lay it out, but my husband turned it into a humorous story.

I was still coming to grips with the fact that my first boyfriend I ever “loved,” had dumped me because he didn’t think he was gay. (Or so he said.) I had vowed never to date anyone questioning their sexuality. I didn’t want to have to deal with that level of paranoia. Dating a bisexual was not something I wanted. This was when I still had the typical “gay” bias against bisexuals. I didn’t think they were “real.” I don’t think that at all now. Not even a little. (Just from my personal observed experience.)

His story did not tickle me in the slightest but I played it off like I was amused. The idea of us actually dating wasn’t something I wanted, so this story wasn’t upsetting. It was just odd. But, my husband is odd.

The first time I ever met Phil in person, this story playing in my mind, was when he came to pick me up from my place. Charlie was super drunk in the backseat of his crew cab truck. My husband was falling all over me, telling me how much he liked me, how hot I was… y’know, the usual drunk conversation. I wasn’t as adept at handling my drunk husband at the time and found this very, very irritating. Especially when he would ask me a question and then stop me mid-way through my answer to ask another; because my response bored him. The entire interaction started off bad, but then we swung through the Del Taco drive-thru and it took a huge turn. As we waited in line, Phil whips out a clear glass pipe and smokes meth right there, behind the wheel of the vehicle.

“This is where I’m going to die,” I thought. “I’m going to die.”

The dude in the passenger seat, who’s name and face escapes me, was unphased. As was my husband. However, Charlie could tell I was bothered and told him to put it away. Which Phil did.

“Sorry,” he said through a cloud of white smoke.

Phil dropped us off at Charlie’s apartment downtown and it would be sometime before I saw him again.

My husband’s and his relationship was like the seasons, It went through phrases, came and went. But their love and bond was always there. Nothing could shake it. When it came around again, they were right where they left off.

At first I genuinely disliked Phil. For good reason, I feel. I thought he was a loser and a bad influence on my husband. Whenever they got together Charlie would drink to excess. Most of the time I wished Phil would just go away.

Yet, he surprised me.

Phil got sober, cold turkey. He ditched every person he had gotten high with and found a new life in sobriety. This turn-around gave him godlike status to me. I struggled to quit smoking, and didn’t until October 2022. He got sober from meth in 2005.

After drugs he ditched alcohol and then realized his mental health required attention. The man was unstoppable. His constant ability to better himself was incredible.

The one thing that anyone who knew Phil would say: “He was always there to help.”

He truly was. After my husband’s diagnosis he helped us paint our old house and move. He let us stay with him for a few months while we waited on our new one to be built.

On my apple watch I have a series of deep cuts in the glass, along the top. I hate them and the way they make my watch look but I cannot bear to replace it for a new one because of what those scratches represent.

One night my husband and Phil got together for a drink at their favorite bar. This was early in the stages of Charlie’s disease, and long after Phil had started drinking again, but reasonably. (He always knew when he had had enough.) I got a drunk text from my husband to join them after work, which I did. Seeing as how it was just around the corner from my office, I saw no reason not to.

I got there, had a lone cocktail and bullshitted. At some point I went to bathroom and Phil followed after where he broke down crying about Charlie. I hugged him tight and let him cry into my shoulder. Little did I know that as he lost balance and banged my watch against the tiled wall, the grout had damaged the glass.

When I asked my husband how he was, when we were alone, he said, “There are only two people I worry about the most with me dying, my mom and Phil.”

There is so much I could share about Phil, as he has been a huge part of our lives. It’s because of him that Charlie and I got back together in 2008. He never judged his friends and family, and was always there when it mattered. When you needed him. He will be missed.