Poly-Cogitate

By most socially accepted standards my relationship is unique. My husband and I have an open marriage. I have a boyfriend and he has had his collection of boys on the side. It was agreed upon at a time when our marriage was on the rocks, but after one night drinking at a Palm Springs bar, our relationship actually has never been stronger. I think it’s because with having an open relationship, we have to be honest and vulnerable. We have to share whenever something is bothering us and rigorously set boundaries of where we will allow ourselves/the relationship to go. It’s the biggest game of trial and error and (so far) has worked.

With my husband’s ALS diagnosis, it has made things even more complex than before. Exclusively for me.

When I was first dealing with the initial shock I went through this weird range of emotions. I was overwhelmed with guilt that I was basically replacing my dying husband with another before he was even gone. Then I shot off on a mental tangent that my in-laws would look at me as though I was brushing my husband aside or that I didn’t care for him as much as I should. The worst of all of them was that I thought my boyfriend wanted him to die so he could “finally have me.” All of this was thought up and manufactured in my head. There was nothing that anyone had done or said for these to be legitimate.

Regardless, I couldn’t shake them and these lingered like a cloud of gnats at the back of my mind.

I have since moved past it all because of communication. It was through that that I was reminded that when we agreed on all of this there wasn’t a terminal diagnosis. (Maybe our marriage, but that’s been recovered.) So, I can’t get caught up in these negative thoughts when they don’t apply and don’t exist.

I felt my guilt and shame because I was driven to do more for him. Be there. Do whatever I can. With the way it is, there is nothing dictating that I can’t.

I felt even more remorse toward my boyfriend because he was unfairly getting the brunt of my anger (about my husband dying) for absolutely no reason at all. It was unreasonable of me to even think he felt that way, and since we’ve talked I know he doesn’t. He’s even gone as far to say that he will help me care for him when it gets the most difficult. Again, offering way more of himself than he should. I never expected that kind of reaction.

Again, the key to all of this working is honest communication. The only hold out is, usually, me. I am so quick to share every detail of my personal life, but there are certain truths that I can’t be open about. Maybe it’s my need to still have “secrets.” It’s just stupid for me to even attempt at being emotionally guarded when I’m wounded, because I have THE WORST poker face. Anyone who is within my orbit will immediately know something is absolutely bothering me, no matter how I empathically remark to the contrary.

Adventure on the Horizon

…And we got it, an appointment with the Mayo Clinic to get my husband a second opinion.

According to the Mayo call center they had attempted to return his request on the 11th and left a message, but I don’t know where this supposed voicemail could be. Because it is certainly not with us. (That’s just my frustration for this whole thing showing.) Regardless we have it in hand.

I am nervous, mildly excited, and a little hopeful. The actual appointment date is on the 12th and I have this ridiculous notion that whenever I come across this number, good things are in store. This number has followed me my entire life and… fuck I’m starting to tear up. It’s stupid to think like this. I know it’s a human reaction to hope when faced with the most dire of circumstances. However I have to be realistic. Seeing his progression, even since we found out, is upsetting. I am certain the intial ALS diagnosis is correct, but that’s also my pessimism rearing it’s ugly head. I can’t let myself be optimistic.

I’m excited because we’re making this a pseudo vacation. We’re going to take our time getting up there, stopping wherever we will on the way. And then when all the appointments are over, the plan is to take a quick trip over to Chicago. Neither of us has been there before, and there is no time like the present right?

Live for today, kids. You never know what life will throw at you.

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.

Terminal in the time of Covid

Covid truly has ruined everything. Even getting a terminal illness.

The most human thing people do, when they’re given a prospective date of expiration, is they want to make the most of the time they have. They don’t want to waste it sitting at home. They want to drink, travel, have new experiences. Well, that is made impossible when everything is shut down.

The other odd side effect is even if you manage to do something, people get up in arms about you “endangering lives” and not continuing to quarantine. They shame you for not doing what they’re doing.

They’re allowed to feel that way, but what if you are given 3 years left to live. Would these same people be cool with sitting inside their home, waiting until they die? And even if the person with this disease caught Covid, they’ve already been deemed terminal. It is quite the ethical conundrum.

My husband was diagnosed with ALS in the time of Covid. He has approximately 3-9 years left, depending on his progression. And even then, that’s just living. He could have 6 months to a few years remaining where he can walk and move around on his own. At some point he will be wheelchair bound. When that occurs is all up to the disease and entirely out of his hands.

True to natural human desire, he and I want him to live everyday like it’s his last. We want to make the most of the time he has left. Whatever that may look like.

This previous weekend we wanted to take a trip, somewhere, to kick of his “Farewell Tour,” as we have dubbed it. Knowing that things are closed made our options real slim. I thought about just doing a road trip, but fuck if even that isn’t super difficult. Every time we made a pit stop every restaurant had their bathrooms closed to the public. I wanted to scream.

Ultimately we decided to visit family in Arizona. It got us out of the house and gave us a destination that didn’t require us to make plans or wear masks. We did still isolate and just spent our time in their homes, drinking; which made things awkward. My aunt got really hammered and started hitting on my husband.

“Have you ever had sex with a woman?” she asked, as we swam in her pool, in between the times she kept playing with my husband’s feet.

In the sober hours she had no recollection, or chose to ignore it. Which I am all for. Liquor makes people do the dumbest shit. And, boy, was she drunk. My favorite part was her telling us repeatedly how she had designed the layout of her backyard. “I’ve never designed anything, and I designed this. Can you believe it?”

I love her.

For a couple days we got to pretend that my husband isn’t dying.

While we were in Arizona, we decided to take a detour over to the Mayo Clinic. We may be getting our second opinion from this particular campus, since the hub’s primary at Cedars is referring him there, to one of his colleagues who specializes in ALS. If he’s accepted, that could very well be where we spend a good chunk of our time.

Overall, it was a good weekend, even despite the challenges Covid creates. It’s just super shitty to try and live while the world and the disease dictate us to not.