I don’t know where, when, or even why this notion entered my head, but for the longest time I always had this gut feeling that my husband would die young. It may have been something he shared with me at some point, some throw-away comment, where he said that he felt like he wouldn’t live a long life. And as I tend to believe everything he says, I probably adopted his premonition as fact, as if he could see the future. Considering the reality, maybe he does.

Because of this “belief,” no guilt weighs heavier than the times when, at my most angry, I would wish that he would just die. Admitting it now causes me the deepest shame. How could I ever think that? Just the thought crossing my mind should warrant my own death. These are not things one thinks of who they claim to love.

Though above all things I am human. I am terribly flawed. Because of this human affliction, I am aware that in our weaker moments we think and say the dumbest shit that most of us ultimately do not mean. The crown of “saying things I DO NOT mean at the worst possible times” truly rests on my head. This is why I make it a habit of trying to give some time and space from my rage, so I can process it without sounding like a sociopath.

I’m certain that the fuel driving my want to do anything and everything for him is the guilt of my prior admission. If I could take away those momentary feelings/words I would. In a heartbeat. Because what I fear most is that, in these moments of rage, I spoke it into existence.

I’ve made other off-hand comments. One’s that could have been fueled by anger and others that were harmless observations said in jest.  One of my more emotion fueled ones was where I wished that my dad would die before my mother. For full disclosure I said this after having picked my father up from the emergency room because he had had passed out, drunk, in his driveway.  I had felt like he would be a handful in his old age. He is the source of my hard headedness and my obsessive personality. If he was left to his own devices I imagine he would have blown whatever savings they had on cigarettes and booze, even though he had been sober for most of my life. Oddly enough, he ended up going first. Now I am left with my mother who can barely speak a word.

One of my other comments that seemed to be a spell, was a Facebook post commenting that if my mother ever got Alzheimer’s she’d be a wanderer. Spoken from the knowledge that if she and I ever went shopping she would disappear in the blink of an eye, as if she “apparated.” At the time of my comment, she wasn’t showing any signs of dementia. So, it’s odd that I would say something so specific that would eventually become my reality.

This is just me trying to understand my role in all of this. At my core, I believe every bad thing that has happened is my fault. I spoke all of it into existence, like some incompetent god. What’s humorous is that I don’t believe it works in the positive. If I had a positive effect of speaking things into existence I would be rich, have a literary agent, and multi-picture studio contract as a well-known actor.

The harsh reality of life (no matter how many times I have to remind myself, I fail to understand) is that it is cruel and meaningless. Things just happen, and there is no rhyme or reason to the events that occur. There is only coincidence, and only when we seek it out.

Losing my wedding ring broke me. Even as I was scouring the house and my car to find it I felt hopeless. I knew there was nothing I could do to find it. It was gone. And most likely forever. It either it came off my finger in a Christmas tree, that someone took home, or it wound up being swept into a pile of pine needles off the asphalt.

The next morning I went back to the lot to look, because the lot closed ten minutes before I had realized it was gone, and the stall in which we had browsed was near empty and all the needles that had littered the lot floor were piled up out of a 3x3x3 cardboard box.

It’s just a trinket and it’s not the marriage or the person, but it was symbolic. I’m already losing my husband to ALS and now the keepsake I had intended to treasure was taken from me.

My husband came up with a fix to have his ring (which he no longer wears because it’s entirely too big for his finger now) melted down and reforged into two new ones we both could wear.

I love the gesture but, like my helplessness at finding the ring, I don’t even know where to begin to look for that. I’m sure if I called up a ring shop they could tell me but, like I said, I feel broken. Hopelessness has embraced my entirety.

Then to add insult to injury I had two shirts either stolen out of my mailbox or delivered to a different house. These were purchased for me and my husband. On them was the phrase “Not today.” And what do we say to the god of death? Well, evidently you also say that to my online purchase.

Losing my wedding ring was just more proof that in life nothing is permanent. Even if you’re self aware to feel or hear when it may be taken, sometimes you’re just not paying attention. And more often than not it’s totally out of your control.

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.

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.