Floyd Skloot on forgetting…and the urge to brush him aside

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I found a great article online today. Actually, my partner found it. He told me how to go to find it. But even as he started to describe where it was on the New York Times online, I could feel myself losing track. He emailed me the link. And I walked a few steps over to my computer to get it. Ouch. But it’s a day in the life with a brain that gets full in an instant and then can dump nearly everything half an instant later.

I’m talking about a piece by author Floyd Skloot called “Forgetting It All.” It’s a beautiful essay about his experiences with a brain injury caused by a virus a couple decades ago. While he has several issues, the one he writes about here is his very damaged memory. Can you imagine going to write an essay the same way you always did but have absolutely no recollection of what you wanted to do? Can you imagine starting a sentence with a character and action in mind and permanently losing them after writing the first word?

I’m asking “can you imagine” for a reason. Because ever since my own brain injury, I have trouble relating to people. Some of that is on my shoulders. And some of it is because when other people push too hard to relate to me, I feel shut out. Silenced. Brushed aside. Kinda condescended to.

Like when I describe something that’s painful and different for me that started with the TBI, too often for my taste people respond with “Oh, I have that problem! I guess I have a brain injury too!” Or with “That’s nothing. I know plenty of people without a brain injury who have that problem, and they don’t have an excuse!”

If you don’t have a brain injury but you forget names, OK. And if you have friends who act like space cadets like I do, but they don’t have a brain injury, OK. But it’s not the same. And trying to erase the differences in our experiences by saying we’re all alike isn’t helpful. Most people don’t like their story being erased.

See, there’s the stuff other people can observe about you. And then there is the stuff going on below the surface inside you, your lived experience with your impairment. If you’ve always been someone who can’t find their keys, then you’re used to it. Maybe you’ve learned to adapt or make jokes or compensate or maybe you haven’t and you hate it. But if these things are new for you, they’re new. That can feel hard, and it can feel isolating. Because in addition to not remembering other people’s names, you have to remember this is the new you. You have to work hard to remember to compensate for the fact that you can’t remember. Where did the old you go? Why isn’t the old you there to keep the new you company?

This came up for me because of the comments below Mr. Skloot’s essay. They’re not harsh and off-putting as comments you often see online are. People are civil and share their own experiences with memory and other impairments. One person described her age-related changes and wrote “mainly I am writing this because the author must have felt so alone when the virus hit him.” She acknowledged the distinction between the two of them even while relating to him. That comment made me happy.

But then there’s this one: “Don’t remember what you went into a room for? I could do that at age 12. Of course now that I’m in my 70’s people think it’s my age. No, I’m just flighty. “

Arggh!

I’m not saying “arggh” on Floyd Skloot’s behalf. It’s not my place to speak for him.

I’m saying “arggh” because the lived experience of an acquired impairment is not the same as being flighty your whole life. Acquiring an impairment doesn’t equate to having a tragic life with no other purpose than to overcome the tragedy. But it can be hard. And relating to someone by brushing aside the uniqueness and pain of their story is kind of not relating to them. Sometimes a valuable response is just to listen or read quietly and thank the person for sharing, like several people did in the comments. Trying to minimize someone’s story makes some of us (I’m speaking about myself here) want to stop sharing it at all.

I would love to hear what people think about this. Please comment below about how it feels for you when people relate in this way around your disability or other identity. (However, please don’t comment with advice for me to get a thicker skin, because I’ve gotten that advice already. Please accept the thickness of my skin.)