From the moment we received Minke’s diagnosis, it felt like we boarded a runaway train. And once we got onboard, there was no way of stopping it.
The infuriating thing about this disease is that no two patients are alike. Furthermore, it is always changing. In the beginning, Minke felt fatigued and weak. Okay. We adapted to that. Then he needed to use a cane. Then a walker. Then he kept falling with the walker and I was petrified to leave him alone, even if just to walk Zelda or go to the bathroom. In one month, Minke was taken to the ER 3 times. All for concussions. I can’t tell you how many times my heart has stopped since this train began.
Minke is now full-time in a power wheelchair. He can no longer walk. He can no longer dress himself. Or bathe. Or shower. He finds it difficult to hold things. Pick things up. He can still eat on his own, but sometimes he needs me to put the food in his mouth. He sleeps in a hospital bed. In another room from me. Has all this changed our relationship? You betcha.
The physical state Minke is in now came about eventually. It wasn’t the way things started, it’s the way the disease progressed. So, with each progression, it takes some time to get used to. Every time there is a change, We both need time to process his limitations. Last week you could do this, but this week you can’t. And you’re never going to get that back.
So we are dealing with constant loss. When things are going relatively well, I hope with all my heart Minke stays in that place for a while.
But frankly, I can’t even remember how we got here. How we got to today. Everything is a blur. My life is a blur. I’m trying to live in the moment, but c’mon … we are always thinking, “well, we don’t need this piece of medical equipment yet, but we will … we will need it soon.”
And then, of course, the reality of where this journey eventually leads … and sometimes I push those thoughts away, but we have to prepare for it, don’t we?
It’s so surreal. So scary. So Goddamn sad. In my mind, we just met! We’re still so new. We only met 10 short years ago, way back in the before times. I want more time!!
ALS you fucking thief! You are robbing us of having a beautiful, long life together. Motherfucker!
