DeeprBlue

After the recent events of the dog attack….things here in the park where I live got gradually weird…..

I’ve always….always…been a quiet person….I don’t “party”....i don’t use drugs….I don’t drink…

I work on my photography and I meditate and I do my yoga and continue my efforts in rehabilitation on multiple levels and so many different facets.

I had this thought…..a memory…come to me yesterday.
I remembered when …..after I was diagnosed….how they put me on massive pain killers.
I’ve never enjoyed, for some odd reason, the feeling of an altered state of mind….at least not medically or drug induced.

I remembered the conversation I was having one day with my doctors and my husband was there and I expressed some type of concern about all of the pain killers….
I remember them saying: “WHY are you worrying about becoming addicted Valerie…?
Why?
Don’t you see…? It’s not important whether or not you become addicted…..what’s important is making this last year of your life comfortable…”

I don’t know why…..I remembered that as I lie in bed having just woken up…

I’m not on those pain killers any longer. I haven’t been on them for a couple of years now….I’ve learned…or better put, I’m learning….how to accept the pain and fire in my brain through m meditation and yoga….
And my photography….means…SO SO much to me…...It is…._the most therapeutic activity I’ve EVER….. experienced in my entire life.

I remember always taking pictures…...but it never….occurred to me…to become a photographer….weird….

Until last year.

I’m not dating….I’m trying to get those doors to my Life’s Goal open again….so, so hard….and complete that book…b/c if I can do that…..I can “save myself” from the….conditions I live in.

One would have to have known me….”pre-disease” and “post disease”...I think….to truly know my heart….and grasp _how this disease affects me.
A mean spirited soul…could…poke and drill…and push those yet un-healed areas of my brain and watch this person turn into a sobbing pile of waste.

I’ve never really told anyone here ….or many others for that matter what exactly is the name of my disease…but after today…and recent events that lead up to today…I no longer feel any concern about who may or may not understand after they read the _name....
The _name of my disease is HSE; Herpes Simplex Encephalitis.

Well there it is.

The dreaded “H” word….(that 78% of the population has and doesn’t even know it….lol)
In my case, however, I don’t have herpes in my blood stream.
Somehow, somewhere….my immune system broke down and that particular disease crossed my blood barrier and went into my nervous system.
Since I have a compromised immune system,therefore, aka auto-immune disorder, all types and kinds and varieties of bugs in the air or elsewhere….can creep past that blood barrier that I _{don’t have} and enter my nervous system, which, in turn, is a direct route to my brain through the spinal chord where I have a spinal fluid leak.

No one seems to know which came first, the chicken or the egg syndrome…
Did I get a spinal fluid leak possibly from that car accident years ago when the drunk driver hit me at 60mph??
Did THAT lead to this?

Did I contract your garden variety herpes aka a “cold sore” sometime ago that I cannot particularly recall….and it somehow crossed my blood barrier b/c of a breakdown in my immune system from some other process over time?

Predictably, this put too many cooks in the kitchen of my brain health….and eventually….one day….after losing everything…after my husband abandoned me to die alone, and after I was one with my bed or a hospital bed for years….I made a decision to fight.
On my own. Not with the “help” of doctors.

The MULTITUDE of ideas, diagnoses, bizarre medically induced comas….dozens and dozens of cases of meningitis….ergo, second (believable) diagnosis: chronic meningitis…..didn’t kill me….and after four years…I found a piece of my strength that I had when i was a walking talking professional in the corporate world….high on the rungs of success….
Just a tiny little piece came back to life within me…..and that was one year and one month ago.

You see….when a person has a cold sore or herpes on their _skin and they get stressed out to whatever level is too much for them….those sores become very painful, or they crop back up if they were dormant, and….they….hurt…

That is exactly what happens in my brain.

Oddly, if I were tested for the herpes virus today, it likely wouldn’t show up. If, however, one were to take a sample of my spinal fluid….that would be a different case.

Even though…..I’m a “miracle” and have “beaten” the death prognosis….and can think and rationalize and interact VERY MUCH UNLIKE many victims of “encephalitis”, every single day…..is a struggle…and yet…I’m fully cognizant of the fact that I am not unique in that.

We ALL are struggling with our own personal situations, health, familial issues, addicted children or spouses, sisters, brothers…..marriages falling apart…financial issues….depression….disorders that confuse or shame us….yes, indeed, I am aware that I am not unique in that I suffer. And, in a weird kind of way, that commonality we all have of suffering….is part of what keeps us all connected….

Also, as the herpes nest on my brain, I cannot risk being in sunlight…..
And it seems that there will _never be a consensus on whether or not that…...thing…..between my left eye (hardly a coincidence that my disease is located behind my left eye area), and maxillary sinus is a :
1. “tumor”
2. “TOOTH” (weird…..weird…)
3. “Lesion”
Make your choice….lol.
I have decided that until my eye falls out or something SO drastic that it cannot be disputed occurs….no one is touching me with a knife and no one else is going to scan my brain (not with conventional MRIs, or CT’s, or X-rays, at least).

I think that’s reasonable.
Isn’t it….?

Why am I writing all of this?
Why am I free associating right now?
Is anyone even reading it?

Because, I think, I’ve arrived at ….place….where I am not certain that my life….MY LIFE….has enough value left to it, all things considered, to continue to allow it to exist.

I’ve been a member of the once known “Hemlock Society” (now RE-named due to silly, nonsense pressure from outsiders) as “The Right To Die Organization”.

Today, after many attacks and tricks and games…..and absolute _uncanny cruelty….in retaliation for exposing an inappropriate behavior towards me….and after being verbally attacked at my own front door….to the point that I crumbled and seized and wound up in the emergency room…..I was just, not one hour ago, handed a 20 day vacate notice.

This may not seem like a _reason to end one’s life…..but…
I think you would have kind of….had to have seen it all unfold these past weeks to beleive it.
Fortunately, (or not), my caregiver witnessed it all. The sweet soul left today crying….and it killed me….she just kept saying how unfair it was for me.

Tell me…..when a women is feeling stalked or sexually “harassed” to the point of feeling uncomfortable to leave her home…....should she be punished for FINALLY speaking out and exposing the truth?
Should I….be uprooted and removed from the community of neighbors that I have come to find a home within….for trying to speak up..?

My disease…..has become a tool….for a man in “power” and now I am being labeled. My disease…..is his…weapon.
I am the….talk….of the community….for the first time since I moved in.
I don’t think more than 3 people became acquainted with me beyond common courtesies exchanged and gentle chat on any level this entire years as I tend to be so quiet and home bound.
The dog attack was kept utterly quiet…..no one really knew about it from what I’ve come to understand…

Now, however, ugly and cruel rumors are being created as a shield against my speaking up and I am known as what..? I can hardly type the words relayed to me.
They hurt.

This, of course, became a priceless defense….against my “accusation”....written out discreetly in a letter to the proper person in charge. Or so I thought.

I do not have the strength….to fight this any longer.

I have 20 days…..and I know the games that get played in these situations as I was a property manager for several years myself….I know the laws. One manager calls for a reference on the potential new resident and the previous manager tells them….horrible things….”secretly” (as it’s against the law to do so); therefore leaving one with a series of polite “No Vacant spots available, so sorry.”

This is a “No Cause” State…..therefore…I was served a “No Cause” notice…...and yet verbally…..my case worker from C.O.P.E.S. (provides me a caregiver)....gave me an earful of information today…..relaying terminology used by this person in power and control…...that I…..feel….somehow…broke something inside of me.

My best friend…..knows something about me….
I’ve lived through the oddest series of horrors…..from being sold…..and…beaten and drugged when I was only 12 years old….when I foolishly tried to run away from home and got kidnapped, to breast cancer, a child kidnapped by a cult, (and yes, it’s really true and I was on national television), this disease…..

Not even my own parents….to this very day….really know what happened to that little 12 year old girl, prior to the police finding me several states away from home….

So…..
I’ve come here…...to spend some time with you here on RB.

I value you…...so….much…b/c I know…..that you know..a facet of me that only other “artists” understand….and that facet of me is innately and complexly inter-twined with the deepest, deepest part of exactly who I am….

As artists…..if we do not…GROW…..through our work….then something isn’t right….b/c as artists we _know the inner process so intimate….so difficult to express….that occurs as we create.

Our creations, therefore, express our growth.
Our work is our outlet and not only that….it is an extremely poignant and delicate reflection of our deepest layers peeled back.
It is immeasurably important in our lives and an addiction that is not easy to explain to others….but it isn’t impossible to explain either…..lol, but…I beleive that, being able to explain the process of of our own work can only come through the growth we achieve through that very work OVER TIME…..many years even.

I’ve been told that I am growing….that it can be seen in my work…...
And if one were to look at my very first photograph or graphic work…...AS A decided “PHOTOGRAPHER”.....and look at where I am now I think there is growth…and I feel…..and yes, I know…..there is SO….MUCH…MORE to come forth…..from within me…
I feel almost as though I am carrying a child…...and I might carry this child fora very long time….

I have no idea…..when…I will give birth to this child…but too….and more importantly perhaps; this child is ME.

This process of growth through artistic expression is unique to artists.
There are many forms/paths of growth, yes, but, the growth path of artists is quite unique.

I feel as though I will not have the chance to continue this…getting acquainted with my truest self through my work…...and that hurts the most.

I feel as though…..I TRULY do have something beautiful in store…..to offer the world….but in my case, the time needed to “get there” especially with the management of this disease…..it will not happen.

I’ve reached a sort of weird crossroads and I feel a sense of disconnected-ness…..and yet I am deeply burdened with pain and sorrow and even fear.

I have never really….been one to accept the fact that there truly, truly are “evil” life forms on this earth…..even though, in my career, I’ve worked with some of the worse cases of criminally insane individuals…..
I still….have ALWAYS, even as a child of a home-life of unhappiness….ALWAYS believed in the goodness of humanity….always.
And, I’ve been told, several times throughout my life….that that is a detriment at times…..and here I am 46…..47? lol….and still it….literally….slays me….when I am confronted with an evil and cruel act against me…..or others.

We all deal with these things differently as we age….and this time…..although I vacillate between gut wrenching bouts of sobbing in a ball in my bed…..and feelings of….a sort of….matter-of-fact-ness that I have a certain responsibility to end the burden I become to others when I need help…..as in a situation like this….