Part of the One Brave Cowgirl Creed is: “It Is What It Is.” Frankly, believing that when it comes to dementia (or any part of life, for that matter) is sometimes like pushing a mule up the Grand Canyon. In a long dress with long sleeves. In August.
On the way home from running errands last week, I thought about how I don’t want to talk about dementia. Not particularly a good thing for someone with a dementia blog. Then I thought: what if I talk about not wanting to talk about it?
Because, you know, it is what it is.
I know none of you want to talk about it either. We didn’t wake up one morning and think: Wouldn’t it be nice if someone in my life got dementia so I could learn all these fabulous life lessons? Hell no.
It happened. We freaked out. We cried; we stomped our feet; we railed at God; we turned to anything that would help us escape; we cried some more. Then we just sat down, exhausted, and said: it is what it is; now what?
For the last eight years or so, I’ve spent every day with dementia: thinking about it, reading about it, talking about it. Many months, I spent as much time in memory care units as I did in my own house. I’m sick of dementia. I hate the disease and the havoc it brings.
But it is what it is. The fact that I even say to myself I don’t want to talk about dementia is proof that I have to — know what I mean? It’s in my head. It’s part of my life, like it or not.
It’s now a huge part of my family history. Like the Colorado River forged the Grand Canyon, dementia forged me. I can choose to accept that or not.
Ever since Mom died, I’ve chosen NOT to accept it. Oh, I’ve been pissed. And forlorn.
I’ve sat on the couch many days so tired and sad all I could do was watch TV and eat cereal. And those were good days. The really troubling ones were the days I just collapsed on the couch and stared out the window. Getting up and turning on the TV was an improvement.
For those of you wondering (and for those of you that don’t care, indulge me), I first watched one of those Hobbit movies. Took me out of the present, right into fantasy — no drugs required. Middle Earth was the perfect grief recovery spot for me. I then graduated to the BBC show Merlin. Sort of a Harry Potter meets King Arthur. Something eight-year-old boys, no doubt, love. The fact that I’m now watching Penny Dreadful, that Showtime horror show, is an improvement. It takes much more concentration, yet it’s still firmly rooted in the magical, mystical nothing-is-real realm. Where else do vampires, a Buffalo Bill guy, monsters, Dr. Frankenstein and Dorian Gray coexist? Hmmm, for that matter, all the shows I’ve recently watched fit this fantasy bill: Vikings (700 AD is a great escape) and Hell on Wheels (Wild West). Interesting. But I digress.
It is what it is is a declaration of acceptance. It’s saying: can’t do a damn thing about it, got to somehow learn to live with it. It’s a letting go, a release, a liberation. It’s a tossing out of all things you know to be real, and a welcoming in of all things you never thought would happen to you.
How do you welcome dementia? How do you learn to live with the fact that someone you love is forever altered? How do you stare down that road?
Well, you just do. You learn that you truly can handle things you never thought possible. You know why? Because you HAVE TO.
In order to survive yourself, you have to. In order to be there for your loved one, you have to. In order to make all those impossible decisions that are now yours to make, you have to.
Each time you reach an impasse, each time you say “I can’t handle this,” repeat after me: IT IS WHAT IT IS. Then move on: right foot, left foot.
Take a deep breath and think about that.
Let go. Feel the freedom that comes from just accepting the way things are right now. No one said you have to like it in order to accept it – you can still hate it. You can still be angry and hurt and scared as hell.
But to live in the now, to accept your new reality and to embrace it, is to somehow start healing. For me, that meant learning to find humor in it. It meant (and still means) learning to be open to the lessons dementia brought. It meant loving Mom just the way she was, instead of lamenting who she used to be.
Even now, just saying those words, I feel lighter. On this side of dementia, I can promise you that it’s all possible.
This is Mom’s legacy. This is why I’m still writing. This is why I’ll keep talking about dementia.