Oh! You Got a Helicopter!

Two nights ago, about 30 minutes after I fell asleep, I woke up to see bf moving around the room. I couldn’t tell what, but there was something else hovering in the air just past the bed.

Oh! You got a helicopter!

I said. (Cause yeah. Everybody breaks out their new remote helicopter to show off at twenty past midnight.)

He gave a bemused laugh and told me no, he had not gotten a helicopter.

Just then, I could see clearly. He was there sitting next to me as usual. A lamp was lit. I’m wasn’t dark. Nothing was flying around the room.

I said,

Oh, it was a hallucination.

He said oh, and took it in stride. This is not the first time I have talked about things that weren’t there.

Tick, Tick, Tick

Cooperstown, NY

So.

Life confounds.

I’ve been given a reprieve. I started estrogen (back in spring of 2017). And many physical symptoms of *whateverthehellthisis* ebbed.

My head cleared a bit. I regained what feels like my full field of view. I don’t see many movement hallucinations in my peripheral vision. I can usually remember what conversation I’m in while I’m in it.

The stuff is all still there, but it doesn’t rule every minute of every day.

But I feel like a ticking time bomb. How long do I have before BOOM!?

Am I the only person in the world to experience this? Is there no doctor who would explore the connection between estrogen and my neurological problems?
Not that my experience represents a majority of women with neurological problems after menopause…but I can’t possibly be the only one.

Can I?

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.

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…

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.

dear bf

What is my responsibility to my BF, knowning that my mind is dementing…as we speak?

Here is a first try:

• I will not become a burden. DO. NOT. LET. ME. Don’t keep me home past your breaking point. (Or anywhere near that point.) Find me a place nearby.** Visit when you can. Hope I get opportunity to hear music & make art. (But don’t EVER make that more important than feeding your soul.)
• I WILL NOT drain you of money and/or resources that should go to your children. No way. My Mother has money. Make sure it goes where it should…as little as possible on me, the rest a resource for Offspring. 
• My love for you transcends here and now. Love and respect me…but TAKE CARE OF YOUR HEART, even when I can’t. Especially then. Someday I’ll remember I told you this, but I won’t understand why or how. Be patient with that version of me. She can’t make sense of this world. But she loves you completely. Be open to love. Just I hope you wait until I’m a but further gone than I am now. 

That’s all I got tonight. Thank you for the amazing dinner. Happy π Day. My love. 

afraid to look in the mirror

Drawn using Note on iPhone.

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.

 

 

 

 

the numbers…they won’t stay put

I teach physics lab. At least that’s what I’ve been doing. I hope to continue, but today’s was the first lab that I couldn’t teach due to confusion. 

I can’t seem to keep the numbers and the variables straight. They seem to have a life of their own.