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.

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.

Fuck my life

And here we are. After all the tests and the wondering, we finally have an answer for my husband’s ailments. He has motor neuro disease. For those not in the know it’s a cousin to ALS. Just not a close enough family member to get invited to the family picnics.

I’m still in utter shock. I want to scream. I want to cry. But none of that is going to change the reality of the situation. Like my husband said, the only thing that’s changed is that we have a name for it. It was already happening.

So, in addition to watching my mother die of Alzheimer’s, I get the pleasure of doing the same for my husband. More proof to me that life is cold and cruel with no meaning or purpose to what transpires. There is no god and if there is, he’s wanking it as he’s watching my and my family’s misery.

Nothing makes you appreciate today like knowing it may be your last.

I still find it odd that the one class I took at community college, and got a B in, (my only B and I graduated summa) has been the most influential in my life. It’s shown me so much about death and what it looks like. It truly prepared me for the shit storm I was sailing into the eye of.

Hug your loved ones and don’t take any moment for granted, because it may be your last.

Praying to the gods

I’m filled to the brim with anxiety. And there is nothing I can do about it. Talking sometimes helps but in this particular situation I feel like conversation about it would only make things worse or even (perhaps) jinx it.

It occurred to me as I was driving, trying not to vomit from the swirling weight of the unknown in my gut, that this is why people believe in a higher power. They want to believe that an all powerful entity is out there looking out for them, protecting them.

I wish I could. I still have lingering residual faith. I find myself calling out to god for help, but after all the things I’ve experienced in just these past two years I have zero faith. And I know the answer to that is, life is struggle and it’s all part of “gods plan” but his plan sucks.

Please keep me and my husband in your thoughts these next couple months. Send all the good vibes your can, pray if you wish. I need all the positive energy to make sure things work out. And I realize that how they work out is how it was meant to be but… I’m hoping what is “destined” to happen doesnt make things worse.

I apologize for being vague. Like I said, I don’t want to jinx anything.