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.