We are a very expressive family. We don’t just tell stories, we animate them. My brother’s stories are probably the best because he has a great ear for accents and so they always find a way into his stories.
My mom was always easy to read. You’d see how she was feeling or what she was thinking written across her face. It’s been one of the things I’ve missed of late. She mostly wears a serious look these days, sometimes a frustrated look. It’s hard to tell what’s going on inside.
That’s what made the discovery of the sneeze face so incredible. Joey and I were visiting when my mom’s allergies kicked in and she had an epic string of sneezes. And in each one was this crazy, contorted expression that was so funny and so wonderful because it was so different from what we have gotten used to. We couldn’t help but double over laughing. Joey managed to get the tail end of it on video…
I haven’t written for the last two months because I needed some space.
We have moved into the last phases of this illness, by all the neurologist’s accounts. Mom is losing speech. She is shaky with her balance. She needs help to walk. She needs help to eat.
There is an inevitability that wasn’t here before, or wasn’t here with as much realness. It’s an inevitability of loss that has been magnified because I can see the loss of what is most basic…eating, walking, talking. I’ve needed a little time to personally grapple with it.
What’s here now is chaos and calm. That’s the best way to describe it. There is not what I consider a large middle ground. There is either struggle and difficulty or peace and ease. They are opposites and yet they coexist. And it’s ok. I don’t think it’s realistic to expect only calm. Not with how difficult this disease is to understand and live with. And so what is realistic, and quite frankly probably a blessing, is that the chaos is measured and it is tempered with large reserves of calm.
For example…the chaos of trying to put on sunglassess…the calm afterwards of sitting and rocking on a porch…