Today is my husband’s and my 20th anniversary of being together and 10 year wedding anniversary. It’s strange to think of that length time, because it does feel like it but also like no time at all. Almost like I blinked and it was gone. You know, all that cliche bullshit. Unfortunately it’s true.
I can still remember every detail of the day we met. It started out as a failed hook-up (I say that because we didn’t have sex, we talked) and turned into what it is today. Our wedding day is equally, if not more pristine as the first memory.
I just want to cry… usually for something momentous you have a big party, go out to dinner or buy lavish gifts but I have done none of that. I will do none of that. My husband would hate every second of it. He’s gotten to a point with his disease that he’s embarrassed by his appearance. On top of that he doesn’t even eat anymore, but instead gets nourishment through “vanilla flavored” shakes that we pour into a tube. In regards to a gift… I know that even he would say “why would you get me one?”
I hate this. I hate all of it.
With ALS, no one knows the time-frame. For some it’s 3 years and for others it could be years. Stephen Hawking lived for 55 years with the disease. Before I witnessed the rapid speed at which his disease progressed I knew, without a doubt, he would make it here. To this very day.
That was 3 years ago.
This could very well be the last anniversary we spend together and… it’s going to be nothing. I’m such a fucking failure.
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.
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…
The Journal of a Jaded Josh 