My case of CRS began last month with a big ole seizure that I don't remember and there's just been a waterfall of don't remembers ever since. And if one more well-meaning nugget brain says, "Gosh, you should get that looked at" I will transform into Can't Refrain from Slapping.
Yes, there are tests, doctors, plans, diagnoses. Blah blah blah. This is one of those rare situations in life when I really don't give a rip about what most anyone has to say. Unless you are my neurologist or an epileptic, please do not tell me how I should feel, what I should do, or how I should live. Bad mood much? Zip it, stuffhead.
There is a happy side to this. Because I work on a hospice unit and can find happy in most anything. Unfortunately, I just took a break for a tortilla chip and can't remember the happy side. Or why I started typing. Hmmm. Let's try this again.
I looked back in the blog posts from 5 years ago. We thought I had viral meningitis back then. I tried to blog about it. It was seizures we know now. Weird. Clearly Resolving Something.
I have become Lucy from "50 First Dates" or the scary tattoo-covered dude from "Memento", two of the most famous memory loss movie characters. I prefer to think I am Lucy. She at least can remember for a whole day. I can't, but it is something to strive for. I'm realizing that Lucy isn't played with nearly enough rage. The lack of memory isn't as upsetting as the times when I have an inkling of everything I am forgetting.
I was thinking today, if I had a friend who had this - how could I help him or be there for him without making things worse and aggravating him to the point of Cursing Really Stoutly at me? The answer can only be concocted by taking the little perfect bits of help others have been doing for me and put it all together in some sort of gentle cookie. Then tiptoeing to his door and oh so carefully passing him the cookie. Then not expecting him to remember the cookie.
My parents offer me a 5 o'clock cocktail. That is nice. A friend texts every couple of days to make sure I don't need another trip to the coffee shop. Others send little messages here and there just to letting me know they and I are alive. I try not to eat out any more because it makes me pretty sick - all the people, the sounds, the lights, the movement but for less than an hour it can be nice. Good friends have offered to do fun things with the children. That's the best of all. That and not expecting me to remember anything.
And one friend reminds me of who I am, what I am doing, what's been going on for over a month. It's like telling me a bedtime story. It is very relaxing and it all sounds familiar if not completely believable. (Have I really given THREE public talks, done a good job of them, and don't remember a word of ANY of them? Did I really play the role of a crazed religious apocalyptic commentator for a multi-media art collaboration at the Anderson Gallery? And... Oh my gosh - I haven't been paid for that funeral?!)
If I had a friend who was going through this, I'd send up the occasional hi with an offer to do something or go somewhere. I would NOT ASK, "How can I help?" Or offer, "Call me if you need me." That assumes a level of memory and understanding completely beyond me/him. The key phrase is, "Is there anything you need TODAY?"
I know that a thoughtful blogger would wrap this all up in a bow with a smile. Maybe that's not true. One of my readers is very ill. From his hospital bed he told me that it is hard for him when my blog goes black. Not everyone is looking for brilliance. Sometimes just a sign is kindness enough. A thoughtful blogger is trying to say hello by just saying the truth. Writing is very hard. Strange words just leap into sentences, and not much seems to rationally leading to not much else. Hello! Truth.
No, I don't need anything today. I'll be checking in on my reader in the hospital and he and I will chuckle when we can't remember what the other has said.
Curiously Resilient and Sturdy
Author's Note: As an experiment, I wrote and edited this as I normally do. I went over it three times in full before posting. 8 hours later I came back and saw all the strange little wordings and mistakes. I have kept them to give you a bit of the feel of temporal lobe mayhem. And no, I did not remember what I wrote but felt like the cat who ate the canary because I knew I wrote anything at all.
Author's Note: As an experiment, I wrote and edited this as I normally do. I went over it three times in full before posting. 8 hours later I came back and saw all the strange little wordings and mistakes. I have kept them to give you a bit of the feel of temporal lobe mayhem. And no, I did not remember what I wrote but felt like the cat who ate the canary because I knew I wrote anything at all.
1 comment:
Wow, wondered what some comments on your FB page meant! Should check in with you from time to time to ask just "what can I do for you TODAY?"
Dave Banks
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