World on Fire

It will be 6 months this week that our world was set on fire. It wasn’t a slow burn, or a cascading of flames flickering at dry reeds, it was a firestorm of unwanted truth that ambushed us as we sat in that windowless office with its putrid greenish walls and sterile fixings in Hadley, Massachusetts.

The words, effortlessly spoken by our doctor, stopped my breath and required me to ask for explanation and confirmation. I needed to hear the words again. I needed to grasp the meaning. This inability to process was choking my throat and watering my eyes. In the seconds before I asked for clarification, I just knew that we had misunderstood something, that there was more hope and that we had read too much into the doctor’s words. I mean he said them so matter-of-factly, actually quite callously with no inkling of despair. But then, when he spoke again his clarification was met with a new knowing, there was no misunderstanding, this was our new reality. “Yes, he has a diagnosis of Alzheimer’s Disease.”

I signed on this journey with Sean more than thirty years ago. I withstood the mullet, the vision loss (he’s blind in one eye due to a retinal occlusion), the baldness (which I have always loved…he has a head that screams to be bald!), the lack of financial responsibility (thousands of CDs in the music collection…hence the financial irresponsibility), the Monty Python references by the hundreds, the chaotic music (some of which I now enjoy), and the aversion to having a dog…we got a dog, two actually.

I never dreamed I’d sign on for this. But I have. I am all in with this man I adore. And I have to find a way to accept it and be joyful for the time we have NOW. To find joy in the today we have.

We’ve been on a rollercoaster of emotions, planning, writing, organizing, living, dreading, hoping, and accepting for all of these six months now. We’ll endure a new President in just over a month, one who promises to turn our world further upside down, with changes to our insurance, Sean’s treatments, our taxes, our ability to provide for ourselves, and our jointly held believe that Sean should, and will, have destiny over his right to die, to end his date with Alzheimer’s on his own terms.

It’s quite easy to say I will agree to let him go when he calls it, but when I really consider the magnitude of that ask, of that final “throw in the towel” statement, I can only hope that I will be my best self for him. I can see me trying to convince him to wait, to spend just a little more time with me, with all of us. And then the rational part of my brain acknowledges the selfishness of my ask and weighs the gravity of loss that I know Sean is feeling. It’s deep, so very deep. To determine your time, to cut it short, to know you will miss out…how do you manage that? How does he manage that?

These talks are hard. I have few, if any regrets of the life Sean and I have built, of the family we share, of our travels and adventures, of the choices we have made, I will regret that he was forced to go through this turmoil, this stress, this ordeal with someone who loves him so much. I know he will worry about me because the pain of letting go will undo me.

I know I will never be the same, and yet being the same was never what we chose for our life. We chose new experiences, adventures, and delving into the unknown. We have shared so much. And we will share this ending too. With gusto. With aplomb. With courage. And with great love.