Time.
If I’m honest it’s the thing I think about the most. I have this friend, who’s an amazing photographer. He’s captured some of the most amazing pictures of me and of the people I love and I told him just the other day how grateful I am to have those memories. Preserved for myself. But also for my loved ones. I don’t know exactly how long I’ve been living with Frontotemporal Dementia but I also don’t know how long I have before the rest of my life dramatically changes. It’s really a race against time but it also feels like everything is moving in slow motion, because I’ve never felt so helpless in all my life.
I’m definitely no stranger to the loss of control for things and circumstances but there’s something about the finality of it all that’s made life feel like I’m living in a real-life hour glass. Free falling..just..forever. Every day I wake up it feels like someone just tips the thing upside down and we start all over again.
There’s an anxiety in my chest that just won’t break, coupled with moments of peace. It’s a hard thing to explain because on the outside.. I look.. just fine.
In fact, I’ve been told that so many times in my life that it’s becomes almost a weapon against me. I resent it and feel as if some folks might give me more grace or compassion if maybe I’d just be a raging lunatic or get lost driving home from the grocery store. But there have been versions of that over the years. Believe me. They just didn’t look exactly like what you’d expect. And maybe more of those days are coming. Maybe sooner than later. And I guess only time will tell. Back to that word: time.
Yes. All of time is so precious to me right now.
The memories. The very good and the very bad.
All the things I’ve left unsaid.
At the end of the day I’m so afraid it all just fades away and what was it all really for?
So as Liz Newman beautifully writes,
“So scared of time. So aware of time. So desperate for time. So grateful for time. All at the same time.”
So for now, we just.. wait.
