Absence on the Extraterrestrial Highway

Rachel, NV - Extraterrestrial Highway - Area 51

I had an absence seizure last Friday, October 11th, at the Black Mailbox on the Extraterrestrial Highway near Rachel, Nevada. The Black Mailbox is famous for being near the front entrance roadway of Area 51. It is a spot where many tourists gather to look for UFOs.

I was not abducted by aliens. 

I was, however, momentarily abducted by my brain.  

I had just been handed a camera from a German couple who were on their anniversary. I offered to take their picture at the Black Mailbox.

And then I was on the ground. Fuc...k. Confusion; the sting of a twisted ankle and scraped knee. Oh, good, no broken cameras. 

I handed the German tourists' camera off to someone else.

Give me a minute.

Ankle. Twisted. Need to dust the dirt off of my clothes.

Are you ok? Are you ok?

Ok.

To an outside observer it appeared as though I had tripped over something. A small rock perhaps? I didn't trip though. Had I tripped my body's instinct would had been to brace for impact, for my hands to reach out. I was standing and then I was on the ground. No in between. Standing. Ground. 

Five minutes later I was fine - twisted, dusty and bruised but fine.

I have been fine since. 

This is day five without a seizure. Five whole days. Five. 

The prior week I had Simple and Complex seizures on Friday, Saturday, Sunday and Tuesday. Maybe the medicine is working. 

Maybe this is not reality. My body is lying silently on an alien exam table; I am zipping through space and I am dreaming... 

*/
RQ

Enter October

I am busy. Busy is good. Busy means that my brain is working. Busy means that my seizures have been sporadic. I have not had a seizure since Sunday. Are you freaking kidding? I kid not. That's almost three days!! This is big time news for my stormy brain. Wootah! Ordering a #1 Brain coffee mug right after this post.

I am excited about the future. I am excited about the possibilities.

Here are a few things that are going my way this week:

• Projects
• Medication
• Relaxation

Projects. Although I sometimes miss working in the "real world", working from home rewards me with interesting projects. I have a number of projects that I am currently working on - creative/technical/nerdy work - primarily paid but also some volunteer charity work. I work with people all over the world from the comfort of my home. Why yes, I do get to wear pajamas to important (phone conference) meetings.

Medication. UCB sent my adjusted refill of Keppra to my doctor. Well, not my current doctor, my old doctor, who is almost 2 hours from where I now live. I have to pick up the medication in person. That's a whole 'nother ball of wax. Breathe. Anyhow, I will have medication for the rest of the year! A small miracle for someone who is uninsured. Checkbox next to "one less thing to stress over". Checked.

Can't afford your AED medication? Have you looked into patient assistance programs? No this is not some clever advertisement hidden in my diary. Seriously, not having reliable access to AED medication has been my BIGGEST stress factor. 

Check out this list from the Epilepsy Foundation: 

http://www.epilepsyfoundation.org/aboutepilepsy/treatment/medications/upload/Patient_Assistance_Programs_March-2013.pdf

I'm going to level with you here, it can be a tremendous pain in the ass and run-around to get doctors to agree to send in the paperwork. You will have to follow-up with everyone. You may have to make multiple in-person nagging appearances - if your seizures are uncontrolled, like me, you may have to bum a ride from a friend.  You will spend hours and hours on hold. You will need to document and track everything. It can be stressful. These medications though, they don't just CHANGE our lives, they SAVE our lives. Be patient. Don't stress. Write in your own diary as you wait, yet again, on hold.

Relaxation. It's cooling off in my part of the world which means that, well, I can't help myself - it's baking season!!! Cooking and baking help me relax. They are simple pleasures. My absence seizures are extremely infrequent and my Simple and Complex Partials generally give me enough warning in advance for me to avoid chopping off a finger, so far anyhow. Sometimes you gotta live a little. I'll let you know if I lose a digit or get an oven brand in honor of the baking gods.

Wishing you a month filled with good cheer.

RQ

Masquerade

The painted faces on the street
caricatures of long ago
oh they were young and oh so sweet
down beyond the boulevard
knock on doors and empty halls
and still sometimes remember
the masquerade's forever

Berlin - Masquerade

I love this time of year, the last summer days leading to Fall. I spent Saturday morning wandering through a Halloween store looking at cheap costumes and tacky lawn displays. I went to a concert on Saturday night. I spent Sunday afternoon making raspberry lemon muffins.

I had two good days this weekend. I only added two time stamps to my Google calendar. One was Saturday when it appears that I  mentally "checked out"  in Safeway. Maybe I was day-dreaming, maybe it was an absence seizure - since there was no pre-ictal agony or pain. Odd. Generally I have some sort of my-head-is-fucking-murdering-me aura before anything hits me. I would not had noticed if not for my boyfriend asking what took me so long (it took me half an hour to grab one item and meet him on the other side of the store? What?) Two was Sunday afternoon when the typical coldness crept over my body and chilled my limbs. I went to sleep for two hours. I felt fine after.

Otherwise my weekend was magical. My slumber filled with surreal yet non-threatening dreams, my waking hours filled with conversation. I want to tell a million stories when my brain is working - I want to get everything out - before the cognitive clouds gather again and the electrical brain storms return. Brain monsoons.

I was thinking about the duality of my summer childhood days.

My maternal grandparents were prim and proper. Maternal summer days were filled with pretty dresses, crisp linen, books and embroidery work. I baked peach pies with my maternal grandmother and gathered strawberries from the garden. I wore white satin gloves and had tea parties with my grandmother. My well-dressed grandfather would take me on weekend day-trips to prospect for opals and other gems and minerals.

My summer childhood days were chaste.

Sometimes when I have a seizure - it is not fear that I feel - instead I feel TIME, a very specific moment of time. Sometimes I feel an exact moment of time I spent with my maternal grandparents - I feel the exact color, emotion, warmth, and smell of the moment - an exact moment perfectly preserved, crystallized and encapsulated - I am emotionally overwhelmed by the nostalgia. Afterwards it is impossible for me to speak about it without a face full of tears and a lump in my throat. The moment - it is heightened -hyper-real. Sometimes seizures are like time machines.

My paternal grandparents were drunk and disorderly. Paternal summer days were filled with dirty hair, greasy burgers, books and bar patrons. I ran wild in the desert as my maternal grandmother tended bar. My t-shirt and jeans wearing grandfather would stop to buy me a "pop" at a local bar on our way home from grocery shopping. I didn't realize as a child that it was because he needed another drink - he couldn't wait to get home to his own bar - he had to have another drink right now.

I have not had seizure related memories of my paternal grandparents - instead my memories are "real" (sometimes seizures make you question what is "real".). My memories are sometimes happy and sometimes brutal - spending early mornings with my cousin's in my grandparents bar - we shot pool and played the jukebox while our grandparents slept - we drank far too many high ball glasses of soda pop from the [soda] [tonic][Coke][7up] button-triggered bar pour gun. We rode dirt bikes, traded pocket knives, shot off firecrackers and ate too much candy. We explored abandoned yet perfectly intact houses - pretending they were our own.  We ran under foot among drunks and floozies. We cried when our grandfather was murdered.

My summer childhood days were vulgar.

the reeling figures pass on by
like ghosts in some forgotten play
beneath the black and empty sky
music plays and figures dance
with partners chosen by chance
and still some times remember
the masquerade's forever

Berlin - Masquerade