Pointless Rambling

It’s weird…. When I was younger I was so lost, but I knew where my thoughts were. I used to lay them out before me in print and would somehow magically discover the answer. As an adult I have so many questions, but I don’t really want answers and writing never seems to be the answer anymore. Then again, perhaps I already know the responses.

I stress about not having that “burning” desire to write, because this was where I honed my craft. In my own self-discovery (online of course) I built-up a collection of pieces that I was really proud to display, even if it exposed my darkest secrets. Yet as my life becomes so much more fraught with peril, and quite frankly more complex, I retreat further and further from the written word. And I wonder if it’s because I just don’t want to write or if it is that I lack the time.

Adulting is all consuming. Working and personal responsibilities sometimes get in the way. Even now the only reason I’m writing is because I have nothing on-deck at work. (Ah, the wonder that is commission.) Here I have a few spare moments to tap out something, but even as I do it I wonder if it is even any good and if anyone cares. Which is ridiculous because I want to do this for me and not for an audience. I want to better my mental state and my skill.

It’s funny, I have so much more to write about now and no idea where to begin. Now, my life is intriguing and worthy of a daily blog, yet I retreat. Funny how that works sometimes.

Recapping Rochester, MN

And we have reached the apex of our trip.

It started out with so much hope, but after the confirmation of my husband’s ALS diagnosis, at the esteemed Mayo Clinic, it has turned somber.

Now we begin the long journey home to begin to change our lives to fit the one heading toward us.

The Mayo Clinic was superb; regardless of my feelings about his diagnosis. The Mayo Clinic set up all of our appointments almost like a class schedule. And honestly, that’s kind of what it was.

The first appointment, on the first day, the neurologist, Dr. Sorensen, performed a physical exam, which included a quick strut up and down the exam room. It was after that, he was certain it was ALS. No other tests were required for him. He still scheduled blood and a pulmonary tests, but he was certain (then alone) that the initial diagnosis was correct.

It was so weird because the moment he started to tell us this information, my brain did this weird trick where it turned his words into a foreign language. It was so bizarre. I kept asking myself, am I having a stroke? But maybe it was my brain protecting me, because he did not mince words. It was what it was.

After that all of other appointments were with physical and occupational therapists. We met with a nurse to talk about what we were to expect and resources we need to immediately get into contact with upon our return home.

Now, we head that way.

There was talk of extending our trip. We wanted to hit the other side of the country, to say we took a cross country road trip, but it hit me that I was just too tired. As time has passed it’s gotten worse. And while I KNOW I will regret not seeing my childhood friend in Ohio (we’ve been friends since birth) and our friend Mark (who we met through twitter), it probably for the best. I think right now we really should be around family. We should be home.

I’m honestly super surprised our conversations haven’t devolved into talk of death and dying. It’s gotten close once but we immediately changed the subject.

I know we should talk about it, it’s silly to avoid something that is going to happen, but it can get super toxic for the both of us. The first few days after his first diagnosis were horrible. We were like a hurricane of sadness…

Maybe we’ve become accustomed to the truth, because this time around we’re stronger. I’m stronger.

It’s weird… I am simultaneously so ready to do what I must for the coming life, and not. One thing I know, for sure, is I will do anything and everything for this man. I will be Superman.

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.