Public and private. All of us behave a little or a lot differently whether we’re in public or not. In extreme cases, people live “double lives”.

The dichotomy between Lynn’s public life, by which I mean when friends and family visit, and private one, where I’m the only person around, is so glaring that it got me thinking.

Specifically, I’ve been pondering why she’s not just okay when friends and family are around, but especially smiley (and today, extremely giggly) and physically better than normal. There’s a wonderful lightness. I guess it makes sense learning what we’re learning about the importance of close interpersonal relationships to our overall health and well-being.

But man, the whiplash that comes when friends and family leave is intense. And disorienting.

When home alone she pops boosters between timed meds and her body is off and on, and when on, she’s bored, and she struggles with any sense of purpose. There’s a heaviness.

Why am I telling you this? Not sure. Maybe to help you mentally prep for this phenomenon if you’re ever a primary care giver. Or maybe I’m letting you in hoping for some sort of connection.

Last night, I had an epiphany. A tough one that I was hesitant to share with Lynn because I expected a negative/defensive reaction.

I told her I had an observation I wanted to share with her. “You have a restless spirit.” There, I said it. Fortunately, I was wrong, because she didn’t argue the point. She listened carefully as I told her I missed her, that it felt like all of her time and attention was taken fighting her Multiple Systems Atrophy. That there was no time or attention left for me.

That I felt more like an employee than best friend.

Most people confined to a wheelchair and unable to do hardly anything independently watch a lot of tv and read. Since Schitt’s Creek ended, Lynn doesn’t watch tv and her reading glasses, despite repeated trips to the optometrist, aren’t working well enough for her to read much.

Thus, when alone, if she’s feeling okay, she’s in constant motion searching for something to do. Anything to do. Or she’s laid out on the couch waiting for her meds to kick in. The only time she’s not on the move is when her body completely quits or she’s asleep.

Our convo, mostly about how dying is scary and spiritual malaise, deepened. She cried and said she didn’t know “I loved her that much”. I took in what I think was her deeper message, “I didn’t know I’m that lovable.” I told her lots and lots of people love her.

I told her I was having a hard time dealing with her restlessness and with her constant MSA fight. That caring for her took all my energy, that there was no leftover energy to just hang. And that it would be really sad to spend our final months or years together not really together.

Case in point. Saturday and Sunday nights I throw dinner together for the fam and then sit at the kitchen island with my own dinner while one or both daughters join their mom at the dining room table. Hell, during the week I do it too, leaving Lynn to eat by herself. Yeah, you’re right, I am a lowlife.

While I am a lowlife, I probably deserve a few points for being vulnerable and risking the convo. Sadly, in part, I risked it because soon we won’t be able to have back-and-forth conversations of that sort.

But not being especially centered myself these days, it’s really tough to take on her anxiety about dying, her exasperation at MSA’s relentless progression, and her general unease and utter restlessness. Especially given the cost that restlessness is taking on our friendship. For now.

Postscript: We ate dinner together. Afterwards, there was more slow dancing in the kitchen. The roller coaster keeps rolling.