dying

September 26, 2023

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.

August 4, 2023

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.

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…

August 22, 2022

The Soundtrack of My Life – 27 – Heaven From Here

Good lawd, I am so far behind on this project. If I didn’t state it in the last one, life has gotten in the way. More specifically my own sadness and malaise keeps me from writing. Try as I might I cannot escape it. Regardless, I set out to complete a task and I shall stand triumphant in the end. I just have to double up my efforts to get back on track. Which, I know I can do.

In addition to my general lack of disinterest, I have had a hard time coming up with new and exciting tracks that bring about vivid memories. That could be due to my inability to listen to music. Lately all I prefer to have in the car has been silence. Just the thought of putting on something makes me anxious. What do I listen to? What will be brought up in the listening? When one has a habit of attaching memories and emotions to songs, it becomes a dangerous game of Musical Russian Roulette when starting a playlist.

On Saturday I was feeling calm enough to listen to something, other than my own thoughts. The song that drifted lazily out of my car speakers was Robbie Williams’ “Heaven From Here.”

I have been a huge fan of his since his first release in the U.S. “Millennium.” I went to my local target and picked up a copy of “The Ego Has Landed” and I have not stopped listening to it since. Robbie was my teen idol, my muse, my obsession so many times in my life. For a brief moment, one entire wall of my bedroom was COVERED in his posters.

Again, I have no idea how my parents did not know I was gay.

I will assure you, I am not attracted to Robbie. I love his song writing. His lyrics are just fun, and coupled with Guy Chambers music… ecstasy. Every album the two collaborated on are my absolute faves. Every track is a banger and I couldn’t pick a favorite if a gun was held to my head. The stuff since the two parted… It’s hit and miss. As I’ve gotten older, I have grown to appreciate the later stuff more than before. However, nothing can beat his early stuff.

I attempted to share this love with my husband throughout our time together but… He hates him. I have to accept that. And it is a consistent hate. Whenever I have had my phone iPod on shuffle, I will tense up the moment I hear the opening notes of a Robbie song. I sit taut, waiting for the moment my husband turns to me with disgust in his face and says, “This is terrible. Who is this?”

I cannot stress this enough, every time. Without fail. And he can’t see who the artist is on the stereo screen. So, he’s not doing a “bit.”

Regardless of my husband’s ultimate feelings about Robbie, the first song I ever gave him to listen to, because it held a “secret message” from me to him was this song. (And I hope you remember my initial post where I explain the implications this action brings.) At the time, he was indifferent about it and did not respond near the way I wanted him to. I was hoping for a: “who is this guy? he’s amazing!” or “this song is fantastic. I feel the same way.” None of that. But that’s my husband. He never reacts the way one expects. Ever. Even now, I know him better than anyone, and he still surprises me.

The one thing I remember, more than any other, was his: “I don’t like the line about our shelf life being short.”

In hindsight, I know he was speaking about our relationship “shelf-life” but with how everything has since played out… It stings. As a result, I go into a weird metaphysical headspace where I begin to believe that I somehow made his diagnosis happen by sending this song to him. Like I inadvertently cast a spell using music.

Even the title “Heaven From Here” contains a new double meaning. One that makes me very sad and I cannot bring myself to type. But I know, dear reader, that you understand what I reference.

I’ll shelter you, I’ll make it alright to cry
And you’ll help too cause the faith in myself has run dry.
We are love and I just wanna hold you near.
Know no fear we will see heaven from here.

All of this is gut wrenching for me. I think of everything I have done, thought, said, and believed over these 19 years and I feel nothing but anger toward myself. I am furious that I took so long to realize how wonderful my husband was and how I doubted what I wanted. I was so caught up in the bullshit of the whirlwind of previous relationships and it made me question possibility.

One thing I have learned is, let yourself feel these emotions. Don’t question what you want. Pick a path and go. If it doesn’t work out… It will be rough but you will survive. And you will come out stronger on the other side. Life is meant to be lived. The good and the bad. Because without the other, it would not give the significance the other deserves.