It's never too early for a Halloween party!

My life is a Halloween party.  Dressing up in costumes, celebrating the morbid and the macabre.  It’s no wonder that Halloween is my favorite season, it’s the only time the world around me matches the cobwebs and skeletons in my mind.  I can’t eat candy anymore, I’m reactive hypoglycemic now.  The problem started last Halloween, after a bucket of lemon heads and gummy worms.  Initially I felt crackheaded high…like I had free-based on rock candy.  But a few hours later, my brain and body fell into a zombied fog….I couldn’t experience a feeling of being “awake” or “alert” for days afterward.  I could barely get out of bed.  My pancreas was overacting to the sugar intake….and putting out way too much insulin lowering my sugar levels, even though the source of the spike had stopped.  My system was so out of whack, that even eating something like an apple would cause flushing sugar-high feelings, followed by a worsening slugstruck drowsiness. Fortunately with time, and slowly absorbed foods like nuts and hummus, I was able to set my system back straight. I’m not sure if it’s from the Chiari Malformation, but the pancreas is regulated by a place in the brain that I have damaged, so yeah, I believe it’s all related.

The support group I’m in for young adults with disabilities at Liberty Resources in Philadelphia was having a Halloween party.  The party was scheduled from 12-2.  Jesse had work from 10 to 4.  I have not been to group since early July, before my tethered cord medical mess began.  Because I missed seeing my friends there more than I value practicality and self-safety, I opted to have him drive me over there at 9:30, and just wait in the lobby of the Liberty Building till it was time for the party, and the staff would open up the meeting room for our group.  The lobby there is entirely carpeted floors, and with this medusa-menacing manual chair, I am unable to maneuver around on them on my own.  So until noon I sat parked in place, making sure I sipped my coffee slowly so that I wouldn’t need to urinate.  It was a Halloween party, so I figured costumes were to be worn.  I tried to draw as little attention to myself as possible while stuck on public display there in the main lobby in a wonder woman costume with a doctor’s lab coat and slippers made to look like two lion heads were chewing my feet off.  If anyone asked me what I was, I’d simply respond,

“I’m bad ass.”   

One gentlemen passing by in a walker smiled at me.

“People with imagination and creativity like you are so blessed and wonderful, they have the ability to reach for the stars.”

I then made him laugh by touching the stars on my wonder woman skirt. He asked me what my disability was,

“Well, it’s pretty hard to walk when my feet are being eaten off by lions.”

I got another good laugh out of him.

There was a man in a seat across from me who I’m not certain what was wrong with him, but I think he was either severly brain damaged or schizophrenic.  He was talking to himself, but he was making references about things around the room.  He looked at my coffee, then started shouting at the empty space in front of him

“In some places coffee comes in a cup

In some places coffee is dark

I know; I hear,

In some places coffee comes in a cup”

He was short and small, with grey wiry hair, and a Cockatiel voice.  He reminded me of the mad hatter from Alice and Wonderland, but without the hat.  I did not try to talk to him, but a part of me really wanted to try.

I was then surrounded by a group of Christian street preachers.  They were originally Muslims who had reformed, because they could not believe that God would work through hate.  I did not tell them about my scientific agnosticism, I just smiled and thanked them for conveying Jesus’s omni-eternal love for me, and prayed in my head to just be able to roll away.

The first person who arrived from my group was Tina.  She was dressed as Miss Muffet, but an evil seductive version, that I tokened “Madame Muffet.” We concluded that we were both the villainess versions of our female costume characters, and joined forces to take over the world…or at least the group meeting room we entered together.  Tina’s mom always goes way out for the group, she made homemade cupcakes with ginger bread knives sticking into them.  Even though I couldn’t eat them, I still enjoyed attacking everyone with gingerbread knives, and my friend Trevor enjoyed eating my murder weapon.  At first I thought Trevor didn’t bring a costume, but he assured me that he was Barack O’Bama, and I couldn’t argue with that. You don’t argue with a smooth talking black man.  I think that Trevor should be President of the United Stated instead.

Noralis showed up with her new boyfriend.  Noralis has had many guys that have given me many reasons to fear for her safety.  The first one she told me about was twice her age of 18, and proposing to marry her/take her out of the country, after a week of them meeting…on an internet dating site.  Because of that dating site, she’d had four different phone number changes just in the year I’ve known her.  She’s young, pretty, Puerto Rican, and terribly in danger of being taken advantage of by the scumbaggery of the webworld.   I was apprehensive at first when she told me about this new one, Jose, but after meeting him, I not only saw more in him that any of her others, but I saw more in her as a maturing female whose finally making better decisions for herself.  She’ll always be the little sister of our group, but it’s good to know she’s being looked out for now by a guy she’s with, instead of harassed and endangered.

We put on a movie that no one watched; we were too engaged in conversation.  I hadn’t seen them in eons, so it was like lost puppies finally reunited with each other.  Trevor told me that his ex girlfriend, who used to be part of the support group, but randomly vanished and stopped answering her phone turned up out of the abyss when he ran/rolled into her at the Mall.  No one had seen or heard from her in a year, we we’re all extremely worried, especially Trevor, who she had never even said goodbye to.  We thought maybe her sociopathic/abusive mother was keeping her captive in the house, and we’re even trying to get the authorities involved.  As it turns out, this was not the case. She had just begun dating another man, and didn’t know how to break it off with Trevor. She did what she thought was right, and cut all connections from him and everyone they ever knew together.  This new beau was an able bodied guy from Trinidad, who she now claims is taking care of her, and is going to take her back to Trinidad with him and have her adopt his children. I understand how hard it must be for two people in powerchairs with extremely limited mobility to sustain a relationship together, and I understand the extreme lengths one with such a severe disability would go to for freedom from a hostile household. But if you’re going to end a relationship with someone who fully loves you like a soulmate, then don’t do it without so much as a word to them.  She still has my sympathy, but has lost much of my respect. 

I know there will be a girl out there for Trevor, but just like my friend Steve who has Duchenne’s Muscular Dystrophy, it’s so much harder for guys to find girlfriends accepting of their disability than it is for disabled girls to find boyfriends.  This is not only because of the intimate limitations, but also the social role of the man to be dominant, protective, etc.  Steve and Trevor are some of the strongest, most badass guys I know, but I think they require super strong women to match them.

There are many issues that people with disabilities are facing that we try to touch base upon in group.  But since we are young adults, most of our conversations DO revolve around relationships, romance, and intimacy, you know, the things NORMAL people our age would talk about.  We just have very unique perspectives on it because we come from abnormal circumstances.  I’m lucky to have a boyfriend who’s okay with having to make sure I don’t go paralyzed or lose consciousness every time that we’re intimate together.  I got Jesse to deliver the pizza for our party, and it was great to see him early.  It was not great to find out later he gotten a ticket for parking outside the building to come in and bring the pizza to us.  He now has a hearing set up to fight it, but the system is saying that even though he’s driving a service vehicle, he should have not come in, and had us come out to the street to pick it up.  In his defense, we’re all CRIPPLED! We would not have been able to pick it up!  He went out of his way to come in for ten minutes, cut the pizza up and serve it to people who don’t have control over their hands. Yes, definite criminal activity.

When our party-time had run out, I wasn’t sure what to do.  I had foreseen two and a half more hours of sitting in carpet limbo.  Fortunately Trevor and Noralis had plans on going to the mall down the street, and since their nursing aids were with them, there were people to push me.  I learned a new word from Noralis’s aid Amber, “Snife”. The meaning of which I am still not exactly certain, but it’s something you really do not want to be.  I’d never been to the Gallery, which I now prefer to call “The underground mall”, because “Gallery” misleads me into thinking it is somewhere that displays art. Upon entry to the conglomerate dungeon, I realized how really out of place I was.  All of the mall-folk were staring at me, not because I was in a wheelchair, but because I was still dressed as Dr. Wonderwoman with lions eating her feet off.

One teenage waste-can who wouldn’t budge, stopping at the sight of me, shouted

“WOAH- HOLY SHIT!”

I smiled and contorted back in his unnecessary volume level

“YEA, CRIPPLED CHICKS CELEBRATE HALLOWEEN TOO!”

Then I gave Amber permission to plow my chair through him.

I deemed humanity redeemable after the fortunate finding of a similar sense of awesome. There was a guy in the mall who let me take a photo of his arm in a sling he had punked out with studs and band patches.  I wished I had one to give him for Great Neck.

We made it to the food court where I unintentionally dissected Taco Bell tacos with hardshells into a napkin of nachos.  I watched Jose help Noralis consume her mashed potatoes, one awwdorable spoonful at a time.  I’m glad she has a good one.  We had somehow lost Trevor for a while upon entering the mall, but I was reunited with him in the demarcation of the Taco Bell line.

“So you’ll never guess what.”

I decided to prove him wrong.

“What?”

Ha! And you thought I’d never do that!

“I just saw my Ex again.  She’s outside selling things.  She looks homeless.”

“Do you want to invite her to come in and sit with us?”

I keep no foul eggs against people.

“Not really, she’s in a manual chair right now, and she can’t push it herself.”

Hmmm…that situation sounds familiar.

“She said she was waiting for her boyfriend to come pick her up.”

I felt sorry for asking.

“Oooo….never mind then.”

“Yeah- and then she asked if I could pay her phone bill for her.”

“So she can continue to not call you?.”

That bitch was snife.

It was cathartic and recharging for me to get out and into the city. I can imagine a life where I have powermobility, and access to transit, where I can be with my friends whenever, and we can go wherever is accessible to us, which isn’t much, but its more that the few rooms of the house I have now.  Noralis and Trevor are both in college, and I wish to join them someday…working on a degree…and having a real life despite a major disability.  It will happen eventually, but until then I have the support to get me through.   Philadelphia, you will be mine somedayJ

Flying horses can't fall.

I did something really stupid last night.  I was sitting in the kitchen in my wheelchair listening to Patti Smith “Horses”, and started to feel funny.  I would have been listening to it in my bed room, but I can only be in there for a few hours during the day because I’m allergic to the guinea pig’s hay. Currently with the living situation Jesse and I have, we have no where else to put them.  I don’t want to deprive them of nutrients, or the digestive benefits of hay, so for now I’m taking allergy meds and staying out of the room as much as possible with an air purifier on.  I also have no where to put my stuff, other than clothes, most of my things are being stored in the basement where handicapped, I do not have access to them.  Jesse had work from four to midnight last night, so during that time I thought I’d try to get some work of my own done.  Without the website up, there’s not much I can do for Sick and Sexy yet, and without the funding, there’s even less.  I don’t feel like a failure, but I feel like am failing everyone in our group.   I created this project to help us all handle the destruction of life we’re going through. But I’m disorganized, broke, financially, and physically, and sometimes I just don’t feel like enough of a person left to pull this off.  I don’t need to be able to walk, but I need to be able to get transported to places on my own schedule, connections, and funding.  I’m just stuck in place right now.  I trying not to dwell on how still my life is running, but sometimes the moment moves me.  And I get possessed by horses,

horses, horses…

And I find myself sprinting across the kitchen floor full speed holding hard onto my walker and dear pseudolife without the ability to feel my legs or lift them.  The world whirls and burning eels swim up my back. It’s hurts so much to feel free.  I collapse onto the seat, and relax as my heart palpitates violently.  I have a cup of coffee and some soy sauce packets so I don’t pass out.  Then I go to bed singing an old song I know in Spanish:

“Un mejor dia vendra.”

…A better day will come.

Dinosaurs and Vampires.

Yesterday was the first time I was able to make it over to my best friends house to hangout since the summer.  Because of my new mobility issues, there are very few friends I can visit easily.  For those that have steps entering their house, I require lifting and assistance, and for those who have carpets, I require pushing. Fortunately, Panda’s house is completely accessible.  But unfortunately it’s because she has muscular dystrophy and is also in a wheelchair.

It’s difficult for us to spend quality time alone together.  Both being disabled, if something falls on the floor…and is too heavy to pick up with our grabbers, we just call it “the vortex”, and pretend it doesn’t exist anymore. It dangerous for us to try to get around without the chairs, because if either falls, we can’t catch or help the other back up.  I remember one time watching her fall down while walking down a ramp.  We were leaving a bar that we’d shooting our on mini-documentary about DUI charged given to intoxicated people in power-chairs. Since we had my boyfriend Jesse and her guy friend from Shoprite there with us to assist, we had gone in without walkers or wheelchairs.  Jesse was helping me down into the parking lot, but her friend had taken off with a girl he’d just met at the bar and was trying to pick up.  The ramp didn’t look that steep, so she figured she could manage it on her own.  At the bottom of the ramp I turned around just in time to see her red licorice rope figure flop.  She tumbled; she flew back, and her head cracked hard against a metal railing.  I was within running reach of her.  But I couldn’t run, nor could I reach.  If only I could have caught her with the wrenching motion of my heart. I just lowered myself on the rail and sat on the ground beside her and tried to smile and look brave.  I didn’t know if she was seriously injured, it looked like it could have been serious.  Her smiling back did not reassure me; she could still smile even if she was shot in the back.  I asked her questions to test for a concussion; thankfully she was all right.  I then did all I could for her; I found her friend, and I screamed at him until he understood that if my hands had the strength he would have been strangled.

Panda and I never watch movies together.  It isn’t because we don’t like movies, we just like our time to be spent doing things; not observing them. We can talk marathons.  I never run out of things to say, because even on old subjects, we’re constantly having different perspectives and opinions. That is the definition of aging; and I am proud to be growing “old” with her.  Our conditions themselves are not fatal, but they are progressive. We’ll be there for each other at every level.  She’s one of the only people I can visit when I’m dizzy and in too much pain to stand, because I don’t feel weird spending the entire time laying in bed next to her talk-traveling our way around the world.

Yesterday we talked a lot about tomorrows.  Where we want to go; how we’re gonna get there.  She has a great girlfriend now, who not so coincidentally is one of my closest friends from highschool. She finally approves of Jesse, because he’s finally showing his understanding of my disability, and responsibilities as the man in my life.  At my room in Moss rehab Center, she came in to visit me while he was there too.  It turned into a sit down “couples counseling”, where the counselor did most of the talking.  Panda told him right there that if he’s going to live with me there’s things he needs to understand and be patient with.  She was referring to my emotions more than my physical needs.  Panda knows that that’s the support that counts most, and since she can’t be around me 24/7, that there needs to be someone else who can handle the job too.  I call her “Panda”, because I drunkenly discovered way back in our college days how well that rhymed with Amanda.

Nomzy Get Your Gun!

I think I have enough hand control left to fire a gun.  I need to move into a wheelchair accessible apartment so that I may come and go as I please, and obtain my right to a life and place within the human race.  This place also needs to be within the price ranges of my “salary”…the 650$ a month the government gives me in hopes that I’ll starve to death or kill myself and relieve America of one more handicapped parasite.  Just because I don’t work, does not mean I cannot work.  Here are the steps I figure I need to take to get there, since I can no longer climb stairs.

1.     Powermobility.  I’m in a manual wheelchair relying on others to push me and carry me in and out of Jesse's mother's house, that she has been so kind to let me stay in while we sort this mess out.  Unfortunately when I’m alone during, if there was a fire, I’d be a gonner simply because I cannot get in and out of this house.  I qualify for living assistance, but there is no sense in setting that up with insurance with home health aids for an out of state place that I am not going to be living in as soon as I get set up with the rest of the stuff.  I cannot maneuver around my bedroom on carpets, and it is difficult to access the bathroom and kitchen because of room separation floor lips.  If I had a powerchair I’d be able to get around and over those.

…o wait…I couldn’t even get a powerchair in this house….

…ok

1.     Get a ramp for power chair.

…o wait…a powerchair would not even fit in the bathroom.

1.     Get an accessible house for the powerchair.

…o wait…I only get 650$ a month on SSI. And I can’t work to afford a place because I don’t have a powerchair and a way of transporting around in it.

1.     Getting a van for the powerchair

…o wait…they revoked my drivers license because the doctors notified the DMV that my neurological condition had worsened after surgery; I can’t lift my legs when standing now, but the only way it affects my driving is that I can’t get into my low-height car.

1.     Get drivers license back.  Have to find the right doctor who understands that just because you have a neurological condition, does not mean you cannot operate a vehicle.  If I would completely incapable of operating machinery like that, I would not even be trying to obtain a power wheelchair.  I’ve had three doctors approve me for it, but since they were all neurologists and not physical therapists, the wheelchair company won’t accept it.  It’s the physical therapist’s fault I’m stuck in this manual mess…what they believe is “making me stronger”, is in fact injuring me and putting me in bed for extra unnecessary amounts everyday.

…o wait…I can’t get into my car anymore, so a license wouldn’t do me much good.  Plus if I’m in a chair I’d need a way of transporting it around.

1.     Get wheelchair accessible van.  Vocational Rehabilitation should pay for one of those, giving the purpose of it is to set me up with a life and job.  Oh wait, no, my OVR counselor already told me they were dropping my case and funding to go back to college because they did not think I would qualify for employment given my list of symptoms, not a clinical observation of how much I can deal with them and work around the pain and dizziness.

1.     Punch my OVR counselor

..o wait I have an arm weakness, I’ll have to have someone else to do that.  Hopefully OVR will fund that service for me.

The only way I’ll be able to have quality of life is by moving to the projects; the ghettos of North Philly.  The Philadelphia Housing Authority has a system where I can move into an accessible low income unit, and be charged 30% of my income from SSI (less that 200 a month).  This system is also for convicted felons who cannot find work; who I will be living amongst in the apartment complex.  I will be given living assistance paid through by insurance, and hopefully then can be setup with a power wheelchair, access to public transportation, and access into a community (NOT NORTH PHILLY) where I can explore, work, and function.  Hopefully showing OVR I can do all this will have them take back their assumptions, and convince them that they should be funding my schooling and personal transport.  When Jesse can find work we’ll be able to find something better.  But because he went the route of pursuing independent arts and film after high school, he does not have a college degree, and makes minimum wage delivering pizza.

So yes, gifted+intelligent+ straight edge+ clean record+ overachieving+invisionist+creative+artistically talented+disabled+elderly parents+broke musician boyfriend=

GHETTO.

I am a skinny young attractive white woman in a wheelchair.  I am getting a gun.

The Mourning of Niecey Entity/Welcoming of Lady Boop

-->

Public Introspection, I’m sorry I have abandoned you for so long.  I’ve had many things to tell about, so many that I haven’t had the time to write them down.  I don’t know where I left off…well…I left off in a Walmart checkout isle with a vitamin water and a few cans of black spraypaint.  But that’s another story.

I got a new haircut.  I haven’t gone to a hair salon in over four years, since the decompression surgery in 2009. Up until now, I’ve let my brain surgeons also function as my barbers.  For each surgery they’ve only needed to shave the back part of my scalp, so I’ve kept each time’s length as layers, like dendrochronological datings, using rings of a tree to show time. Because the back of my skull is missing, I’m afraid to have that area shampooed by anyone, including myself.  When I massage it too rough in the shower, my pupil’s dialate and I become dizzy. Also with the titanium fusion hardware keeping my head in place, it’s impossible to lean back into the salon sinks.  I called the lady beforehand and warned her in question form

“Have you ever worked with someone without the back of their skull and their head fused in place?”

She said no, but that she liked a challenge.

It took three women at Micheal Anthony’s Salon in BellMawr NJ to shampoo my hair.  One to hold my head sideways above the sink, another to do the actual shampooing, and a third to hold a plastic tarp to keep the water from spraying everywhere at the angle they needed to have the faucet to reach my head.  It was even more difficult for them, because I hadn’t brushed my lobsided tina-turner birdsnest in over a month.  I’d just been released from Moss rehab center, and before that the hospital at North Shore.  Unfortunately life-sustaining processes like hair maintenance just don’t get enough attention when you’re hyperfocused on tedious bullshit like reclaiming the use of your arms or legs and being able to urinate regularly.  I wanted my new dew to be a cross of Uma Thermin in Pulp fiction, Catherine Zeta Jones in Chicago, Bettie Page, Bettie Boop, and Bettie Rubble.  Short, black, easy to maintain, and still conformable with my non-conformist arty brainshape.

I got a new spinal cord cut.  I wish there was a magazine I could have picked the style out, I would have pointed to the photo of the girl doing parkour dives off a Mountain Dew truck, and said “That one.”  One of the effects of my Ehlers Danlos Syndrome is a condition known as “Occult tethered cord”.  I always write it as “Tethered Chord”, cause I’m a musician and we hate the correct spelling of akneething.  All of the connective tissues in the body of someone with EDS are defective, including those of and around the spinal cord.  While those in the joints are hypermobile, and bubblegummed, the ones of the spinal cord are like gum after its been soaked in ice to get it out of your hair, tight and totally unmaliable.  That extra tightness creates pulling and tension on the brainstem, causing stretching of the nerves and all sorts of neurological chaos as an individual is moving, especially when bending and lifting the legs.  I did not know I had this problem, and neither did my MRI.  It wasn’t until kicking around in the pool during aqua-therapy caused my legs to go numb and my bladder to release that I knew something was weird.

I had the surgery to release my captive spinal chord with my barbers in in Great Neck.  The surgery went well, by making a minor incision on the muscles around my chord, Dr. Bolognese was able to get my elongated brainstem to spring up two full inches.  But when I came home to begin the healing process, I entered hell the moment I hit the floor; I fell on my way to the bathroom in the middle of the night.  A laminectomy had been performed on my bottom lumbar vertebrae to access the area, leaving me unstable and succeptable for banana peel moments. The MRI afterward showed a tear at the surgical site, and a pocket of spinal fluid that had leaked out going up six vertebrates.  I could not move my arms or legs, and my head pounded like a God f*cking Gaia mother Goddess of all God f*ckers.  I was admitted to Moss Rehab Center, where I regained motion but not strength in my limbs.  I was released two weeks later in a manual wheelchair I can not push myself on carpets or on inclines, so to this very now I am trapped to the spot like Dr. Scott Medusa-ed in the end of Rocky Horror.  In any carpeted room such as the bedroom I am typing this in, I can’t help but thinking

“My vheels!  My God I can’t move my vheels!!!”

 And because of a 1 inch wooden floor lip, I’m unable to access the bathroom without help. 

The doctors at Moss refused to send me home with an electric powerchair, because I was able to move a few feet on flat tile floors.  They also notified the DMV, telling them that I was no longer suitable to drive, so I had my license revoked.  This was a huge casualty, not only did I have to surrender the lisence, but I had to get a new photo taken for an identification card, being very fond of the old one, Niecey Entity/Neon blood-Telsa will be missed. I had applied to and been accepted at Temple University, for their neuroscience program with a scholarship and financial aid from Vocational Rehabilitation. Because of this medical setback I was forced to decline my admission, and lost funding services because OVR has concluded that I am no longer "fit for employment".  I was also unable to return to the apartment I’d been living in in North Philadelphia, for I was no longer able to get up the stairs without major amounts of gorilla assistance.  So now I am living back at my boyfriend’s mothers house in BellMawr NJ, and coincidentally back with my boyfriend.  Me and Jesse had broken up for a while because we didn’t know how to deal with my disability, or if he even could.   I believe that tragedy tests us, we don’t know what we WOULD do, only what we’re doing, and maybe what we should and shouldn’t have done.  Maybe I shouldn’t have left him because he wanted a family and a normal life, and maybe he shouldn’t have let me move away to Philly when I was angry and frustrated that he was ignoring my disability and life challenges.  His words that finally sent me off were

“If I didn’t believe that you’d someday get better, I’d never have let myself fall for you in the first place.” 

He’s always reminded me of Beast from Beauty and the Beast; angry all the time, and he eats with his hands.  I’ve noticed that he looks at me very differently after all this messness.  Yes, I’m in a wheelchair right now, so he does have to look down, but it’s not a look of pity or regret or guilt or surprise.  It’s a look of love, and full, honest attention.  I look back up at him and think

“There’s something there that wasn’t there before.” 

And I know there is. 

Because we now do stuff together. Not just the easy stuff like organizing a major music project or wild whimsical adventures to Virgina for hairless guinea pigs for our breeding service, and seminal desecration of foam recreations of world wonders, and surprise hornets’ nests.  But the hard stuff.  Like grocery shopping.

And because his words that brought me back were

“We’re gonna make the best of this.  No matter what.” 

We’re getting our band Great Neck back together, and will be doing shows again as soon as November.  I can’t stand right now, but standing’s not necessary to rock and roll (and to make stupid pun jokes).  Music will heal me, so long as I stay out of the moshpits.

Look forward to everything (and not just because my heads fixed that way…ooh I’m getting good at this cornish pun-villainy.)

<3 The 4 dimensional personification of Bettie Rubble.

And o hey- we have hairless guinea pig babies for sale now!

www.guineapunks.com

"Found" (Not the God kind)

I never thought that I’d find my answer to Post Traumatic Stress Disorder through an episode of  the TV series “Lost”.  I didn’t watch the show back when it aired, I had no interest in fiction, nor did I have the commitment for a dramatic television series.  My roommates in college followed it religiously, and even attended parties for the season premiers.  I might have joined them, but at the time I was just coming down with my neurological symptoms, and with the new difficulty of focusing my eyes and photophobia, television made me sick.  

I tend to time travel. Back and Forth.  Posterior and Anterior. I am an artist. I am a scientist.  I am a believer.  I do not believe I am.  There is no god.  There’s a god, and it’s abandoned me.  Thanks God, I am so grateful to you or whatever.  No thanks, I’ve had enough.

When I have a flashback episode, it’s not like typical cases of PTSD.  Many sufferers re-live their moment of trauma, but for me it is reliving everything up to that.  I leave my body, consciousness, and the very present. I believe that this evanescence is organic, neurochemical, and extremely spiritual.  I am transcending time, for time was recorded in my cortex.  My brain holds receptive information in the form of memory, and sends it out again for me to receive the exact way I did when it was coming from an external stimulus.  I smell trees that I haven’t seen in years.  I see people who I have lost all contact with, and I feel my body moving the way it used to be able to before I became handicapped. It’s much more than being sentimental.  When these spells hit, I lose all conscious awareness, and undergo extreme physiological symptoms of adrenal-surging (rapid heart rate, shaking, hyperventilating, dilated pupils). I belief this is the outcome of areas in my brainstem that normally provide chemical regulation, malfunctioning from my  Chiari, and causing a rapid influx of adrenaline, norepinephrine, or something science does not yet know.  I do not believe that I am travelling through time, but rather that I am travelling through reality. 

I tried explaining this all to Jesse.    He has always never known me; I met him long after my life ended.  He cannot understand it, but he understands that he has to put up with it in order to say “I love you too”.   Losing my words, I can’t always describe things the way I want to (unless I have a keyboard and extended time to think on them).  Jesse is disassociated but at the same time intuitive; I don’t have to describe for him to understand.  Unfortunately I’m so slow sometimes that I don’t get when he’s actually listened to me.

“Have you ever watched “Lost”?”

“You know that I don’t watch T.V., RIGHT?”

I’ve been told I’m overly sentimental.  I think I just remember too much.  I have difficulty with my short-term memory, but I do not consider any of that to be memory. It’s just a paper bag to hold disposable thoughts. It’s everything I learned in college.

“There’s an episode of it reminds me of you.”

Jesse also thought that I looked like one of the female actresses from the show.  She was blonde, tan, and large busted; thus discrediting all of his opinions to me.

“It’s called “The Constant”.  It’s cute. And romantic.”

As cute as not being able to get out of bed with headaches and having nothing else better to do than cuddle up with the one you love and watch their favorite terrible T.V. show DVDs on your old PlayStation system.  It was pretty romantic.

If it’s all just chemical, then why are specific memories reoccurring?  Why are specific thoughts spell-triggers? Photos, music, my old name.  It’s not random.  It comes in sets, strict patterns of people and places. The best of times.  I relive them, but do not enjoy them again.

The episode was about a man who after exposure to electromagnetic radiation becomes “unlocked” in time, and is flipping back and forth between two specific periods.  One “the past” where he is a soldier in military training, and the other “the present”, eight years later after he has been lost on an island and yet somehow is on a boat trying to get help for the others who are back on that island. Don’t know, like I said, I don’t follow these things.

There’s plenty wrong with being sentimental.  When people get stuck in the past, they tend to lose the present.  The present must always be priority; it is what determines the future, by inevitably becoming the new past.  

A scientist warns the protagonist that his human brain will not continuously be able withstand the time “jumping”, because any shift that rapid causes massive strain on the system (other people with it eventually undergo insanity followed by deadly aneurisms).  The only way for him to survive is to find a “constant”, something that occurs in both time periods, that he can hold to and use to connect himself together. He choses his true love over his favorite brand of bourbon, and because in the past he had broken off connections with her for the military, must go back and repair those so that she may be his constant in the present. Cliché cheesey, but at least I was getting a good cuddle out of it. 

And it was sweet, but there was no way I looked like that stupid blonde girl.

And slowly my brain put it together.

I am not sentimental or nostalgic. 

I do hold onto things.

I am not fond of all of them.  Some I am.  But some just stick.

They are references.

Checkpoints.

Keystones.

Markings on my mind.

These breadcrumbs spelling out who I am, where I have been.  So that I do not get lost on the way back to myself.

My life has been through such rapid shifts.  I need to hold onto things for balance.

And yet I have no constant throughout all of my lives. 

I get lost…

..and I begin to smell trees.

The Warrior Mission

I have a holocaust physique.  Having a chronic medical condition has withered my figure, stripping the leaves and color from my twiny branching bones.  I am weak.  I was given nerve tests to measure the strength of my nerves.  They are still strong.  The doctors told me that my weakness was psychogenic.  They are mostly right.  It’s not that I can’t lift more than two pounds or stand up on my own, it’s that I do not.  Doing so causes the world to spin and for radiating whips of pain to spur in my head, along with neusia, heart palpitations, and an abrupt pushing sensation that knocks me out of thought and concentration.  I’d rather think than move.  I’d rather be still than be in so much pain.   

In the petrified clarity, I think about the dangers of heading these warning signs.  My brain doesn’t want to be beaten, but my body is suffering for it.  My world is shrinking, as my muscles atrophy it becomes more and more difficult to do even the simplest of tasks.  I can’t even open most doors on my own anymore.  I’m locking myself in my own coffin.  I think about my friend Amanda, who has an autoimmune disease that’s eating away at her muscles with no known cure.  With all the physical therapy in the world she would not be able to build herself up to even fractionally functional.  And here I am, fully able to rehabilitate, fucking myself over everyday, because I’m so afraid of the pain, and even more so the painkillers that might allow me to make it.  I do not want to be so weak anymore, I do not want any of the shards wounding me to be from mirrors.

I have a prescription strength will and a script for as needed Perkaset.  I have protein powder, and strong friends.  In the next two months I want to acquire muscle, I won’t give it a weighted number, I’ll just measure it qualitatively instead.  I want to be able to open doors, jars, and feel more like the girl I used to be, and the warrior that I know I still am.   

And I want to be strong enough someday to punch Dr. Verma in the fucking face.