In case you couldn’t pretty much tell from this thread already, D and I have evolved into a long distance resumption of our relationship. We communicate throughout the day, every day. I’ll be there next week for a four nights, three days and plan to head to Seattle monthly for the duration unless something changes. As with many later stage PALS, it could be a month for him, could be a year. His lungs are still going strong (100% on 02 sat!) , his troublesome recent infection blasted out (it was cellulitis, not blood or lungs as first thought). Foot sores persist, so that’s an issue. Most speech and walking is gone. Feeds himself still. Diagnosed in May of 2015, he lived alone with help from caregivers until last Fall, when he transferred to the assisted living/end of life care facility. It was just then that he stopped teaching online classes due to speech issues. He still writes essays on his life and his art And enjoys a massive music collection (he was a musician as well as artist).
I am sure this all sounds perfectly bonkers to most, particularly to most CALS current and former (I do not consider myself an active CALS now, btw way with D. His sister oversees things locally and I am not responsible for caregiving). This is a very different situation from my late husband, but essentially D is the other love of my life, he was the biggest deal outside of Brian. When he found me on birthday (the one he’d remembered for decades), we reconnected quickly. I really looked into my soul for was this really all about Brian and ALS. It’s not. Truly, there is no other X and no other person I’d put myself here for again with those nasty, nasty disease. D is the second person in my entire life I have said that I was here for until he breathed his last, albeit in a very different context. Love gives me no choice, and I am really very happy in that love for as long as we get to have it - days, weeks, months. I’d be shocked if he goes past one year, but we also know that ALS is just about the least predictable condition humans get.
So, here I am. Former CALS, current mostly long distance partner. The odds of any of this happening were only slightly greater than winning the lottery. Yet here we are. If you think I’m nuts, its because I probably am. I’m happy though, and would not, could not make another choice. As the saying goes, love is love.