coming out to my students

I couldn’t teach my physics lab a few weeks back because of confusion, for the first time. My colleagues covered for me.

It was such a rough week.

My Monday lab was taught by the professor whose office I landed in, an hour before class, in tears. He knows I have neurological problems; he didn’t know memory loss was one of them. And despite the uncertainty of my future, he showed every confidence that I can finish out the semester; that no matter what happens, I am still a contributing member of the faculty.

BF taught my Thursday evening class for that week. (BF is how I ended up in this college town, and how I got the gig teaching physics lab. BF is a physics professor.)

When I taught my next scheduled class, I made some vague excuse about some vague illness. The students bought it. They have no reason not to. But it felt icky, because I was not being true to myself.

So then, I resolved to tell my students that I have memory loss and that was why I could not work that week…and that is why I still can’t learn their names and that is why I sometimes stop at the board and forget what I am doing and that is why I sometimes substitute words without realizing. So then, I told my next class that I have early onset memory loss and I don’t really know what’s going on.

And the world didn’t end. The kids didn’t pack up their notebooks and walk out of lab. And the next time I lost my train of thought, I just said “See? I told you that would happen!”

OH MY GOD what a relief. I have been working SO HARD to hide the shame of my changing brain! No hiding, no shame.

Two of the students in this class…my first coming out class…pre-med students, were fascinated by my story. Rather than telling me that my experiences couldn’t possibly be, they asked me questions. I will always have a special place in my heart for these two young women…my brain will probably forget them, but my heart won’t.

Snapseed

when people treat me like…

So…my family refusing to talk about me maybe having memory loss and/or dementia, until a doctor says it’s a real thing, feels a little bit like…

…they think I’m not a reliable witness to what’s happening in my own brain…

…sorta like, maybe I have dementia…

…boom…

jane

on the other hand…

I found myself outside today, shoveling snow in my long johns.

Damn…neighbors definitely saw me. 

But guess what…neighbors see me out-of-doors in my underwear and what do they think?

Oh that poor thing out in the snow in her underwear…poor thing really is losing her marbles.

They don’t know that I’d have been out there just like this, thirty years ago.

Now I can use “memory loss” as an excuse for just being me. Cool.

ouch

I can’t express how desperately I need to create some record of what is happening to me, in my brain. I also can’t express the kind of energy it takes me to paint a picture or write an essay or even a card to a loved one. The focus to stay with something, when I have no other person here to keep me on-track.

I’m sad my family won’t hear about what is going on inside my head until it is confirmed by doctors. Not sad. Heartbroken. Am I not enough of an expert on my own brain to have any credibility?

This is not so with BF. He listens, he offers thoughts, points out funny circumstances…anything I could ask for, if I had the presence of mind to do so. Holds me when I am overcome with terror, calms me with his steady presence. Reassures me that his love is not just for the good times…

I feel so warm and loved.

And so fucking afraid for him. Afraid that my decline will smash his heart. Continuously. (Or is it continually? Crap I can’t remember which one I want to say.) On and on, without stop. Days. Months. Years.

 

 

 

pre-diagnosis blues

Stuck in this never-never land of no diagnosis…I know something is terribly wrong…doctors are starting to listen to me, as I can point to the late credit card fees…and the week I missed teaching because I was too confused.

Most of the people I talk to want to deny that there is something wrong with me. And I know it is out of kindness…it is out of caring for me. They don’t want to think that I have dementia…that I am going to continue to decline…but it leaves me completely alone with nobody to talk to about it.

Like, how long will I remember who I am? How long do I have to, say, go on a nice vacation and have it not be a complete waste of money? How long will I be here for my daughter…now 17? Her grandma just died (her dad’s mom)…my kid feels so alone in the world. Her dad is lost in a world of unbearable chronic pain. And I can’t blame him for not being there for her. You can’t imagine what it’s like if you haven’t lived it.

And now, I’m getting lost in my own brain. I don’t know why I expected to be around for a long time…I guess statistically it was a decent bet…but with dementia breathing down my neck, how long will I be a parent to her?

My brain problems don’t seem to be Alzheimer’s…seems more likely that this is Lewy Body Dementia…I hadn’t googled that condition specifically, because for a long time, I just thought I had Parkinson’s Disease. I knew there were a bunch of parkinsonian conditions, and I knew that Robin Williams was found to have LBD, and that it sucked out loud. Now when I read about LBD, it feels like home. It feels like me.

And it’s hard not to pay attention to the prognosis…tends to be worse and quicker than Alzheimer’s…but apparently the medical world is not all that up on Lewy Body Dementia. And a younger age at diagnosis gives me a potentially better prognosis.

And of course, I have no fucking diagnosis whatsoever, for the moment. So I can’t claim to be a member of any goddamn group.

But bless their hearts, the Alzheimer’s Association does not discriminate…they sent a woman out to my house, and she has all kinds of information and help to offer me. She does not require a diagnosis, and she doesn’t care what kind of dementia a person might have. She is here to help people with early-onset dementia, and I don’t have to prove anything to her.

She doesn’t tell me about the times she loses her keys and finds them in the fridge, or walks into a room and forgets why, or forgets somebody’s name…I know everybody has these kinds of things. This is way different. This is all day long. This is getting lost in a neighborhood I know. This is having to check several times to make sure I put the car in D, and not some other thing, such as R.

Yep I’m still driving. How long, I have no idea.

At least I can write this here, and I’m not being a burden to anybody I love. So, if you’re reading this, thanks to you, for being there.

 

 

 

 

creepy selfie #2

selfie_no_2

“we will not be ignored”
watercolor & pastel on paper

I’m going to have to find a way to represent brain confusion that doesn’t depend on a distorted face.

Or not.

I plan to take this train wherever it leads me…so who knows. My paintings might get even creepier. I think the paintings give BF the heebie jeebies.

Today for the first time, I googled “young onset dementia,” and I am finally finding accounts written BY people with dementia, rather ABOUT people with dementia. The site https://www.youngdementiauk.org/ is my object of fascination today.

late fees

I asked Luz over to help sort my mail. I can’t make meaningful categories anymore. When I have meaningful categories, I  can’t figure out what goes where. And then I put things on the wrong stacks.

Luz helped me sort about six stacks of mail, and we made one important pile of late bills and tax payments.

This was over a week ago. Still have not paid my late bills and tax payments.

I’m losing my ability to adult. I’m ashamed…grateful to those who help and yet still ashamed because I still do not follow through, in spite of the generous gifts of time and caring.

Late fees continue to grow.