This morning, driving into the coffee shop that I refer to as the office, I was listening to a program on CBC radio about five brain-damaged men who meet weekly with a psychologist to talk about their lives, their anger, and their small joys. They call themselves the “five crazy guys” and their stories are tragic and inspiring.
One of them mentioned that brain injuries are called the invisible disease because, often, people suffering from them don’t look visibly different in any way. Then he said, “But they’re the most invisible to us. We only see “us” in the mirror. We’re just us, and the disease is something that only the people around us, that know us, recognize.”
I immediately thought of Mom. She is constantly amazed when we tell her that she’s been herself the whole time that her history hard drive has been malfunctioning. There’s a disconnect between the idea that she can be present in a moment, be the woman we’ve always known in her demeanor and actions, but yet not remember that moment a week from now, or the next day.
For her, every day is the first day after her illness, the day that things start to get better, the day when the memories will start coming back. And yet, by the end of many days, there’s a worry that creeps back into her eyes when she realizes that most of that very day has already slipped away, and that it really isn’t the first day after, but just another day during.
That look comes every time she asks about a friend that hasn’t been to visit in so long and we remind her that they were over last week for coffee. It appears behind her eyes when she has that moment of cognition that suggests that, if she can be present and still forget about it now, and then the fact that she feels present now might not mean that anything is getting better at all.
Miriam and I trade glances when the conversation turns this way. It generally sours the mood, erodes perfectly better days. We just hate to see her fighting it and being miserable doing it. It’s the anxiety that hurts her most, speeds the erosion, drives her hope away, and we do what we can to keep her calm and in the moment. But we know what’s coming, and it usually means that the next day won’t be so good. She won’t remember why she’s upset, but it will be there.
Mom has the disease of ALZ, and it’s mostly invisible to her, but not to Miriam and me. I wonder sometimes if she wishes that we wouldn’t be honest, or that we weren’t there to remind her of all the history she’s lost. I don’t want to think it, but there it is. Honestly, I don’t think we’re there yet, but I know it might come – will come; that time when us trying to help her hold on is more of a hindrance than a help.
I hope, when that time comes, that I’m strong enough to let go with dignity.
That thought, that we see her disease more than she does some days, and that there will be a day when I have to let go, just welled up in me as I listened to the radio and I had to pull over. That thought was strong enough to intrude into my manuscript world and make thinking of fictions impossible, and I’ve been doing pretty good most days on the obsession front, I really have.
Not this morning. They were in my face, and I had to get them out, get them down. And now I have to put them aside again, hoping that letting them sound and blow into the cold air is enough to keep them quiet for a few more days, submerged and below the surface again, wishing sometimes that I could forget like she does.
But not really, not ever.
And now I’m staring at the words and wondering if this is for public consumption at all. They’re kind of depressing. But they’re the truth. Take the good with the bad; she taught me that too.
