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.

Project: Optimism

Depending on things going according to plan (and let’s face it they don’t tend to do that in my family), the husband and I could very well be taking a road trip to Minnesota to get a second opinion on his ALS diagnosis. While he and I believe the competence and skill of his current doctors, it would be negligent on our part to not make the effort. In addition, I know his family is holding out hope for their own “google search diagnoses” to be true. Since we were told he has motor neurone disease (aka ALS), each one of them has become experts within a few key term searches. The problem with their optimistic perspective is that it’s infectious. Now I too have a glimmer of hope.

I hate how pessimistic I have become. I call him “Dark Josh” and he jumps out every once in awhile when the weight of the world gets to be too much. He’s realistic, but also very cold and, at times, cruel. It’s not difficult to maintain my jaded world view after all the bullshit from this past year.

I say these things, though clearly I don’t believe them as staunchly as I had assumed. Or I wouldn’t be entertaining the idea of this side quest.

Don’t get me wrong, I really don’t want his diagnosis to be real. The last thing I want to see is my husband slowly disintegrate before my eyes, until he’s just gone. I’d rather gargle Trump’s balls while he poured bleach in my eyes. Yet, I can’t undo what’s already in process or ignore the matter-of-fact way in which these doctors discussed his dying… But I guess I can hope.

The hubs’s family holds a firm belief that he has a vitamin deficiency. They assume as much because his symptoms did not occur until after he had weightless surgery (the gastric “sleeve”). It was only a month (or two) after that they manifested. Many of the symptoms tied to this keyboard-diagnosis are very similar to those of ALS. But there are also a lot of symptoms that these articles claim to happen with these deficiencies that he hasn’t experienced. And the same could be said for the ALS. Even the doctor admitted that the timing is suspect and that there have been some atypical results in their tests. He too recommended getting another’s opinion.

The fact of the matter is, I am willing to go to the ends of the earth for him. No matter what it is. I will go with him, hoping for the best but preparing for the worst. And if we get the same answer, then we will take the next steps to slow the process. My biggest worry is that this will all have been for nothing and we will have wasted what little time we do have.

P.S. I hate that both my mother and husband have diseases with ticking clocks. Add some new writer’s to the room, God. You’re getting tired and sloppy with these recycled plot points. At least give me a long lost twin brother.