Is a broken heart
The prerequisite of genius?
Or does genius instigate defect?
Is fame based on merit or tragedy?
Do we choose the souls
Most tortured so we’ve nothing
Whatsoever to live up to?
To a writer popularity
Feels suspiciously much
To be truly unique
To meet resistance
To be a celebrity means
That quality is optional
I would think it scarifying
For your best and worst work
To be held in the same esteem
I noticed that my blog views drop significantly and consistently on Tuesdays which amuses me. I just have this image of Mad Hatters and Tea parties like everyone just disappears into an alternate reality. While there are probably more rational (perhaps boring) explanations I’d personally rather think that people are off having completely absurd adventures. Makes me think I should spice up my Tuesday routine. What happened to the adventures of childhood anyways? Who says adults can’t experience wonder and fantasy (of the innocent variety)?
This Tuesday go out and collect
A Rock (don’t forget to name him/her)
An Event Flier
An honest to goodness library book
Plant matter (leaves, twigs, flowers whatever and make an arrangement)
Oooooh or maybe you could find a hideout/special place
No idea what is wrong with me today maybe my water source has been compromised :-P.
For me the first step to accepting my new diagnosis is to own it. I’ve written a note to Facebook to inform my real life friends and my cousins of the new diagnosis. I have published a lengthy post here at Curious Flowers describing the ordeal, albeit ineptly, and linked it to my primary blog Mindlovemisery. I’ve even adjusted my about pages. I can’t imagine going through every post I’ve ever published and omitting the word Epilepsy nor can I feasibly contact all of my followers. I wrote my mom a long email as well describing the situation. I have no idea how she will take the news. I am not sure if she is familiar with PNES or the dissociative disorders. Actually I feel fairly certain she isn’t familiar with PNES but I have no idea about the latter.
I have even written an apology letter to Dr. G. Dr. S allowed us to read Dr. R’s notes and what he reported to Dr. G versus what he said to us (on numerous occasions) does not add up. Though I am not satisfied with many aspects of my care I felt it necessary to clarify the source of our misunderstandings now that I have discovered them and to apologize to her for my suspicion. I never fully trusted her because of my loyalty to Dr. R. I can admit that. I also wanted to give her the opportunity to clarify. I am still uncertain as to when she made the diagnosis of PNES if recently then it is perfectly understandable that I am only just hearing word of it myself. Even though she is no longer my doctor and thus I have no reason to see her again I still wanted to take responsibility. She has already emailed me thanking me for my letter and has informed me that she will contact me by telephone. Yikes I am so awkward on the telephone.
I guess that’s stage one complete now I need to study PNES!
Generally when meeting a new doctor I prepare a mental list of questions and concerns for discussion. I rehearse the list countless times but when faced with the actual appointment I forget in large part what it was I intended to say. This time I thought to hell with it I am just going to write a list of instructions for myself. That’s right actual instructions. I tried to keep it brief 1/2 a page or so. My appointment today has left me in a state of turmoil. I was diagnosed with Epilepsy by Dr. R in the local hospital. Dr. R seemed certain of my diagnosis. Sam was present during all my appointments and he was under the same impression. I was transferred (or so I was informed) to a specialist in another hospital Dr. G so I could be evaluated for surgery. I even underwent the week long surveillance in hospital. Dr. G was not forthcoming with information on my condition. Sam also attended my meetings, we both asked questions and very little was ever revealed. During my week long stay I had 2 seizures the nurses monitoring me informed me that the seizures read on the EEG but my doctor later told me that the EEG had not picked up any unusual brain activity. She also discredited the previous EEG analysis of Dr. R (he had told me that there was activity as had the nurse administering the test). I asked her point blank could I have something other than Epilepsy and bizarrely she said no there isn’t any other explanation. When I told her I wanted to seek psychological treatment for Depression she advised strongly against it.
I requested a change of doctors in part because of communication difficulties. I just met with my new Neurologist will call her Dr. S and lo and behold she tells me I have PNES (Psychosomatic Nonepileptic Seizures) that could be the result of a Dissociative Disorder. Dr. G and Dr. S work together and I get the impression that they are good friends. Dr. S has access to all of Dr. G’s clinical findings. Not once did Dr. G ever tell me I had PNES. Sam accompanied me to the meetings to act as a translator and not once did he ever hear her say any such thing either. I am pretty sure we wouldn’t forget a thing like my diagnosis, at least he wouldn’t forget it. Now I am told that I need to go to a psychologist for treatment. Why on earth did Dr. G advise so strongly against it in the first place? If I had PNES and she knew that to be the case why didn’t she want me to receive treatment? I still receive notices every time I have a doctor’s appointment that I am supposed to be keeping an Epilepsy journal, I should know because I received a doctor’s appointment today reminding me to keep my journal. Why when I went to the emergency room did they mention Epilepsy when I apparently have no such diagnosis? It is all a little perplexing to say the least. I could have started treatment for PNES years ago and would have done so if only they’d clarified my diagnosis. Encase you are wondering/confused it was not Dr. S who rediagnosed me she was just reporting Dr. G’s diagnosis. Needless to say Dr. S did not believe me when I told her that Dr. G had never informed me. Had it just been me visiting Dr. G I could actually accept that I might have misunderstood because of the language barrier. I could even have accepted that I forgot because god knows my memory is horrific but there is just no way Sam would have missed it. Dr. G not only didn’t inform me of my diagnosis she also left me completely stranded. When I went to the psychologist I told them I had Epilepsy (it must also be in my records incorrectly) and so they didn’t consider Dissociation at all because as far as they were concerned my disassociation was explained by the Epilepsy. No telling what I might have gotten diagnosed with had I underwent an evaluation! God knows I have already been given a shit load of dangerous drugs.
As for how I feel about the diagnosis? Dr. S says that PNES seizures can look nearly identical to Epileptic seizures and you can’t always tell the difference without an EEG. If that’s the case then it is a plausible explanation. I feel utterly humiliated. I have told my friends and family that I have Epilepsy. I joined an online support forum. I identified with the disorder and it explained so much of what I was experiencing. There is an element of disbelief still but I will get past it and work with this new diagnosis. I am sure I will understand/accept more after I do some research. I am excited that I have treatment options whereas before medication wasn’t working. She told me over and over that PNES doesn’t mean I have fake seizures and that I don’t have any conscious control over my seizures just as I didn’t when I thought had Epilepsy. Of course I understand it intellectually but emotionally it will take a while. I am also embarrassed that I didn’t figure it out by myself (well I actually did consider that I might have some type of Dissociative Disorder). The thought that I might, with treatment, be able to learn again is just outstanding. I remember in high school during exam day I aced all the tests, top scores but I couldn’t remember having even taken the exams. The thought that just may be I could have that brain, that I might have that data stored in my brain, data that I might be able to recover is amazing. Even if I can’t recover lost/misplaced data, if I could learn again, make memories again that would be a dream come true. In the course of writing this I have already become more positive. Treatments going to be a bitch though I imagine I am going to have to poke around at all the mutilated ouchie bits. I am also a little pissed at Dr. G and Dr. R whom I actually did trust. While I am glad Dr. G did a lot of testing what the hell was she thinking not telling me about my diagnosis and advising against the only treatment that might work? I just have no idea.
I peel back the silence
Of your withering gaze
If I am to live face down
You will have to uproot me
For I will not lie in submission
Though the picture is strangely passive I liked it
I stumble face-first through unobstructed space
To what fear do I assign these inadequacies?
I venture that life is more terrifying
Than a beseeching black womb
I venture that light is more obfuscating
Than darkness for the eyes serve the ego
To know the heart without pretension
Is the appeal of sleep but I do not wish
To remain motionless that long
To pursue that which can only be conceived
Is the reclamation of wonder and indeed
It is better to chance upon happiness
Than to surrender to a sentient death
I was on the tram and I just wrote down my random nonsensical thoughts I feel half-crazed today. I did go to the library b/w everything else and checked out “Slouching Toward Nirvana” by Charles Bukowski now if only I had a moment to read it lol
For those who have known love only as entrapment you have not yet found real love.
My regular readers are likely familiar with my past, at least so much as I have disclosed. For those of you who are not familiar I was abused in different ways by both parents. I spent much of my early life hidden. I never confided in anyone and I believed myself responsible as children are so tragically inclined to do. When I met Sam and decided that he was the man I wanted to spend my life with I made the decision to tell him the truth about my past. The results were both terrifying and liberating. I had numbed myself to such an extent that I couldn’t feel physical pain. With confession came sensations that I had not known my body capable of experiencing. He didn’t blame me for what had happened and more than that he welcomed me into his heart. His acceptance has helped me forgive myself bit by precious bit.
Sam encourages me to pursue my dreams even if we don’t have the means to finance them, even if they are far-fetched and impractical. The first book I ever made, he sewed every single copy by hand. There have been times where I have blamed him for holding me back, when in truth it was I who had placed the limitations on myself. Each time I tie myself up in the knots of self-doubt and indecision he is there unraveling them. He challenges me, he forces me to look at myself honestly, and most of all he loves me, through success and through devastating failure. With him I have the courage to be myself unaltered and unadorned, the very self I spent my whole life demonizing.
Does he piss me off? Absolutely when I want to give up he’s there giving me the proverbial kick in the ass. When I just need a moment to recuperate he’s there for me whether it is a shoulder or solitude that I seek. I chose a partner who is my opposite, many find this type of friction unsettling but in truth I believe it essential to growth and yes passion. Do we fight? If fighting is discussing alternative viewpoints then yes we do. If fighting is raising our voices. Then sometimes, I raise my voice when I get excited. If I am talking about my book I practically scream with enthusiasm. As for raising our voices in anger sometimes but we don’t get into screaming matches or shout over one another. If fighting is exchanging blows verbal or otherwise then no we really don’t. Yes we offend each other on occasion being that we are different there are misunderstandings and hurt feelings and times when we take things too personally or in the wrong way but we don’t trash talk.
For me love is freedom. We have not grown into each other such that we must compete with each other for our very survival, we have grown alongside. We have our own personalities, we have dreams that overlap, and dreams that we hold as individuals. He brings me out of my shell he doesn’t stuff me kicking and screaming into another one.
I weave my nerves into the eye of Moirai
That I may know intimately the conditions
Underneath which we heedlessly suffer
I press my heart firmly against your palate
That my warmth might thaw your resignation
Please do not solicit me with indifference
Instead, let me lick the condensation
Of your hidden fires that you may carry me
Unholy in the base of your spine
I don’t usually share my unfinished poems but I thought I’d do so now. I am not sure if this offers any particularly insight, possibly that I’m lame though that was hardly a secret 😛 The numbers are serving as titles as I haven’t named them.
Even though you don’t occupy
My loneliness you remain
Imperforate on admission
For there is nothing about you
That I would ever replace
The sky is a rose half-open
I gather storms, the thorns
Of a precarious rapture
I am not afraid to scar
Not afraid of those three words
That when strung together
Could alter wholly, my world
By what voodoo do you absorb
The torment of every incarnation
Ever fabricated in the suppression
Of my disconsolate soul?
They say that poetry is a dying art and yet within me it is a source of all life.
As many of you know I am planning to publish a book of poetry in the, fingers-crossed, near future. Naturally I have been analyzing the demographics of my readers, at least those readers who have expressed genuine interest in my work. At my main site Mindlovemisery I have a responsive audience for which I am immensely grateful. When I submit poems to other sites (not specific to poetry) I get crickets with the occasional “I don’t understand so I can’t comment.” It makes sense that people who write poetry are the primary consumers of poetry books but I am still saddened that so few non-writers read poetry. As far as writer’s go I suppose I am rather abstract in presentation, a consequence perhaps of my wavering consciousness. A lot of people comment that I am ghost-like, ethereal, not of this world. You can apparently spend so much time lost in daydreams that you become, yourself, totally implausible. I am okay with the fact that I am not mainstream but I must still consider the possibility that my poetry lacks clarity and relatability. Can I create poems that envelop the soul? How do I harness my metaphors?
My WordPress readership is pretty diverse, all things considered, but can my poems be appreciated without a translator? Personally I love to hear the various interpretations of my work, that each person walks away holding a piece of themselves. That said I don’t want my poems to be so self-indulgent and convoluted that nothing whatsoever can be extracted from them. If I passed my poems out on the tram how many people would save them?