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.
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…
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.
It’s truly an overwhelming task to write a eulogy. One wants to pen something that encapsulates everything about that person. Their strengths, accomplishments, joys and what their presence meant to those around them. The thing that inevitably happens is it is filtered through the writer’s personal prism and one’s own experiences. As a result, some things get lost or not told at all because of limited knowledge. Or even worse it becomes about the author and how that person effected them. But My mother meant so much to so many people that, to do so, would be a great disservice to her memory. For that, more than anything, I don’t want to fail.
This is my 4th draft. Every time I write one I sit there thinking that it just isn’t good enough or that I’ve missed some crucial part of who she was. Like her undying faith in Christ, even at the very end. Or how she exemplified what it was to be a true Christian. My mother was someone who lived with an open heart and an open hand to to help all who crossed her path.
In one I tried so hard to focus on the fact that while she wanted to be a stay at home mom of 7 kids, like the wonderful woman from which she got her name, she got more than 7 instead. She got them in her nieces in nephews. From the moment they came into her sphere they were everything to her. She took them shopping, trips to theme parks, and was an ear to bend when they felt like no one was listening. And I couldn’t bare to leave out how at times, for some, was another parental figure. When life took very unexpected and cruel turns she moved into their homes to help care for them. Family was of the utmost importance to her. And to leave that out would have been a sin.
Then there was the draft where I talked about how her life didn’t turn out the way she had planned as a housewife. I tried focusing on the beauty that comes in the unexpected. Like when my father noticed her from across a bar. The two hadn’t been what the other was looking for but the two turned out to be just what the other needed. They complemented each other in the most beautiful broken symmetry. She wanted to be needed and he needed to be loved. I wanted so much to impart how much they each loved the other. Even when things seemed so rough. They held onto each other ever tighter and merged that brokenness into a whole.
And with each of these drafts I had to mention her dedication to her job. She started working at State Farm in 1964 and stayed there until she was forced into early retirement in 2005. She would have kept working to this day if she had had the opportunity. Her work gave her such a sense of importance and held so much of her identity. Even when words and thoughts were difficult for her to convey she would somehow manage to talk of her 40 years of work.
And then most importantly I could not leave out how much she had wanted me. But that one was difficult for me to write. I never could include that in any of my drafts. I felt like it took the spotlight away from her and onto me. But I know she wouldn’t have been upset at that, because I was what she had wanted. While I may not have turned out entirely as she had planned, her and my father both never missed an opportunity to tell me how much I was wanted. Or to share how much they loved me, how proud they were of my accomplishments and my sense of self.
But try as I may in each version of this eulogy I could not capture who my mother was. She was so much more than just anecdotes or bullet points. She was love made human. Any would have known that the moment they met her. She may have been shy, but it was only because her love was so great she was worried that it would be dismissed.
I will leave you with some of the words that inspired her:
1 Corinthians 13:4-7 says “love is patient, love is kind, it does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self seeking, it is not easily angered, it keeps no records of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.”
The Journal of a Jaded Josh 