My Own Private Shit Show: The Art of Coping

This week’s blog is focused on the events of my daily life and how I’m using perspective to prevent them from driving me completely insane.

Letting Your Car Go

We paid off our car. Which means we’ve given it permission to completely fall apart.

You’re free, Marshmallow.

While a mechanic was trying to figure out why the car smells like burning and then erroneously did a pressure test…

Well… the car exploded a little as a result of the pressure test or, in his words: “Your car almost sent me to the hospital!”

He said this to me over and over and over when I calmly called to check on the car:

“I almost died!”

“I almost had to go to the hospital!”

“Your car almost killed me!”

“I’m the only mechanic here!”

I really dislike whiners and drama queens.

And it was clear I had called him at a bad time. He didn’t go to the hospital as far as I know. So I responded, “And, yet, remarkably you’re at work today. When can I pick my car up.”

So we rescued Marshmallow who is enjoying some attention as the shop apparently posted the video of this attempted murder to Reddit where it allegedly trended for a bit.

The video couldn’t have been trending too hard as I can’t find it. But the shop was apparently all abuzz with their internet success when my husband went to pick up our poor car after the mechanic tried to blow it up so… we will be finding a new mechanic.

But Marshmallow now has stars in its eyes and we’ll just roll with the old beast until it can’t roll anymore.

Can’t Have a Pet? Make One Up

So my husband and I can’t manage to buy a house and escape our apartment in this really crazy neighborhood.

We keep being beat out by people who have an insane amount of money to throw down.

So we are stuck in this apartment. Thus, for my birthday, my other half got me a pet which won’t ever die or shed.

Horace.

If You Can’t Fix It, Pretend It’s Not Happening

Survival is key. So, when the people outside our apartment start screaming and ranting and smashing glass and shooting guns, I now have a solution:

noise cancellation headphones.

So it seems this week I’m just showing off my birthday gifts like a 5-year-old but they’re helping me to cope with my own private shit show.

Yet, there are some things which may not have such an easy solution.

Your Brain Stops Working So… uh… fuck.

Two mornings ago I woke up at the normal time and got out of bed and walked to the bathroom.

Now, when you wake up in the morning, you may feel a little groggy and disoriented.

I felt this but I felt it in its most extreme form.

It was as if my head was spinning. It’s difficult to explain but I felt as if I had lost my ability to gauge where the floor was in relation to where I was.

I lost balance.

And something was pressing against the back of my eyes.

Yet, I’m one of those types who will just keep moving forward if there is a way it can be done.

So I frowned and, with difficulty, continued to walk toward the bathroom. But what I was feeling seemed to intensify as I continued and, consequently, on the way I almost tipped over.

To the left.

I felt compelled to lean left.

To lean left and keep leaning left until I was lying on my side on the floor.

But I didn’t give in to this compulsion.

I made it to the bathroom and then I was in the bathroom thinking what the actual fuck.

I shut my eyes and the room continued to spin inside the darkness. And the pressure continued to push against the back of my eyes.

It also affected my eyes somehow. I couldn’t see as well or it took more work to see.

It’s difficult to explain.

Regardless, life goes on, and so I eventually emerged from the bathroom and crookedly marched to the living room and happily fell forward onto the rug to do my morning exercises.

I found this was also difficult but I enjoyed being on the floor.

I could get a solid sense of where the floor was once I was laying on it.

My husband eventually woke and found me sitting cross-legged on the floor with my eyes shut. I didn’t feel steady enough to again rise to my feet so I had just stayed on the floor.

He encouraged me to try to get up and into the chair was was close.

And I did.

And the intensity of the feeling relented but it lingered.

I was able to send a MyChart message to my neurologist.

The Happening hadn’t affected my cognitive function. I had no issue typing out sentences or speaking or anything like that.

It just felt like part of my brain had been left in the mechanics of a dream.

And my brain was no longer whole. It wasn’t working the same way as it had before.

So I got up and got dressed and went to work and my neurologist’s nurse called me to get the details and to check in on my status.

She encouraged me to “Take it easy today” but I was at work so that wasn’t going to happen.

Also, the especially shitty reality is how my husband and I are in the process of being kicked off of our state health benefits.

We make just enough to be without health insurance.

Once I became employed, we should have been kicked off but, a few months ago, the state wasn’t kicking people off health insurance due to COVID.

But now COVID is “over” so… I’m soon to be without health insurance.

My workplace is too small to offer health insurance and, even if they could, it’s not clear the policy would cover a preexisting condition like epilepsy++.

Yikes.

Trying to Find Perspective on ALS/FTD

Some Shit Show realities are more difficult to cope with.

And I can’t help but suspect the ALS/FTD process is starting to kick in.

If you missed those earlier blogs, I received the dramatic news that – through neurological genetic testing analysis – I would someday have ALS/FTD.

It’s not a matter of whether… just when.

This put into play my seeing a neurological researcher who is apparently on the forefront of ALS research and who had me do an EMG.

https://epileptaste.wordpress.com/2021/03/17/monday-electrodes-needles-nerves-static-a-bed-and-four-men-and-an-epileptic-crammed-in-a-tiny-room/

After I passed the EMG, the neurologist told me to watch out for symptoms like… tipping over.

So… uh, fuck. I’m totally almost tipping over.

Also, it’s spooky because, as my kindred Cory reminded me, this is how it had started with my mom after her diagnosis of FTD.

I distinctly remember this day when she was still able to walk but… had this crazy lean. I can’t find a photo of the lean but maybe I didn’t take one.

It was the day she wore all pink:

She was so cute that day in her pink outfit but she couldn’t seem to stand straight. She leaned so far to the right it was rather impressive.

And scary.

And sad.

In response to my fear of being killed by what killed my mother, I’m told, “But you’re not your mother”.

Yet, I already have the scientific data which confirms my mother’s fate is my own.

And, lately, when I walk into a room at a family gathering, my dad’s family and my mom’s family gasp, because it is as if my mother has just walked into the room.

Or so they tell me.

We apparently look rather identical ever since I had my hair darkened.

I take that as a compliment because my mom was beautiful.

At the same time, I also look just like this stranger who is a biker and who isn’t me:

A friend saw that ☝️ photo and sent it to me, asking “Who’s the dude?”

🤷🏻‍♀️

So… looks don’t really mean much.

Being a Drama Queen

The goal of finding a house is to find a comfortable place to degenerate.

If I degenerate and die here, I’ll just be another city statistic.

I don’t know if what happened Wednesday morning was a mini stroke or what but it was pretty trippy.

And it lingers.

Predicting my demise, I spent last year forging the rewrite of my graphic memoir:

Because if I’m propped in a bed, voiceless, motionless, trapped, I’d like a copy of that book to sit close by on a table to remind people of who exactly is trapped in the body on the bed.

I also feel it’s very possible I will lose my voice like my mom which is why it was so important to record it and do the audiobook.

So… I’ve got my “I WAS HERE” bases covered.

Maybe it’s not ALS/FTD/epilepsy…maybe my eyes just got SUPER BAD over the course of a single night.

And I really just need some glasses with a super strong prescription.

Who knows.

Regardless, if the lingering lingers forever, I’ll probably be able to get on Disability because this shit is rather crazy.

Then I’ll be home, degenerating, blind, unable to work, and with access to health benefits.

And – just like that – it’s like life solves itself.

So matter what shit show you’re running, be sure to cherish it.

It’s gone in the blink of an eye.

And so are we.

Love always. 🖤

PS Halloween approaches…!!!!!!!!!!🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇 🦇