Mutterings Of A Madwoman

Well, kids, we have a new word for you all: Depakote. And if I stick you on this med you are not likely to give a crap about the condescending tone of voice I am opening this update with. No, you shall not care, because if you keep the train of thought long enough, and if you really still even care a drop by the time you have mustered what outrage you can dig up, it will still be naptime by then, and so we’ll all just grab teddy bears and pillows.

But oy, have I got a headache for you!

I’ve gotten my spasming feet wet a tad in the seizure dept; my latest forays have been into public seizures.

Start at the back…:

Had a seizure about a month ago, right before some dentistry. Dr Okada upped my Keppra dosage to the ceiling, at 3000 mg daily. Then I went to Chicago, a couple of weeks ago. Got off the plane, made it through a store, and had a lovely seizure laid out across the exit to my local Acme grocers (yes neighbors, that was me; howdy). Went home, had 2 more that day. Decently severe, longer lasting buggers, I might add. I visited the good Dr. in Pittsburgh, received my first booster vaccine in the trial restart.

Restarted the poly iclc, which is far less kind that it was the first few months. Nice little flu once a week.

We agreed—any more seizures and we would start adding a second medication.

Hit Love Park and City Hall this Thursday with Chris and Zach for a fun day out in the hood, and (you guessed it) had a nice seizure on the concrete by the fountain at Love Park.

So the Doc ordered up some Depakote (250mg 3 xs daily—follow that link, it leads to some research on this item actively fighting brain tumors) for me to take on top of the Keppra. I took the midday dose yesterday, the pm dose last night, the am dose this morn, and 2 hrs later I was having another stupid damn seizure.

Only now I can’t judge how stupid and uncoordinated I am from the seizure because the Depakote already did a good job in that department.   It, by the way, is basically Valerian Root and Flouride, at base.

Anyhow: Next MRI was to be in September at the same time as the next vaccine. I was hoping to get into a T-3 fancy machine they have there. Now I MRI, and maybe get an MRS (spect) or a pet scan July 8^th. Wow.

So, I’m freaking a bit. But it took me forever to type thing through the molasses in my brain, so that’s as far as I am going now. Naptime, all

NP

Once upon a time I felt so whole. Yes, always I pushed for more and more, to taste, to feel, to live and experience to the fullest extent that existence could offer. And still I do, even knowing that such blessings are also curses. Yearning has always been a part of my basic nature.

These days, however, it feels as though I have fragmented, become pieces of myself, each sectioned off from one another, not unified in voice, desire, will. One day I feel the urge for life to flow one way, the very next a contrary self raises its hand to destroy the steps towards desires that I had spent the day before reaching for, in my thoughts, my mind… my heart.

I am too many: a cacophony of voices; a conflict of existence. I want so badly, you see, so urgently, deeply, that I yearn with an ache much like that of a heart rending in two. I am, in an entirely new way, my own worst enemy.

A pattern has taken root, for self destruction. Oh, not of my body; I fight as hard as ever to breathe another day and another, to stay physically whole, intact. No, the wounding and fracturing I speak of is deep inside, the only outward sign of it being an increase of inertia, a few wrinkles of troubled thought and self let-down in the forehead, a slight frown that flits across my face. It’s destruction via the lack of action. To allow oneself to rot and wither through enforced ignorance, forced detachment.

It feels as though piece by piece, I am allowing myself to fade, allowing the compromise of my dreams in waking life, allowing myself to back down, to give up. I tell myself that so many things that once meant something to me, so many desires I wanted to chase, have simply faded, their importance and urging has waned. But the tiny voice behind that frown, and an increasing feeling of disappointment in myself, show that I am lying.

That’s the greatest sin of lies: I am lying to myself. If anything, everything is more important than ever, so important that my hands become tied, my thoughts twisted, my desires suffocated by a fear that doesn’t sound at all like terror—no: it sounds very much like a voice of reason.

Likely it’s that same asshole voice that insists it’s time to ‘grow up’. It winds spells of compromise that reach with webs to hide your heart’s desires from you, in some screwed up effort at self protection from disappointment. It’s destined to fail, that effort, but none the less we all seem to fall victim to its siren song, which offers a barter: your dreams in exchange for less pain, less heartache. That voice is deadly, and insidious; you don’t hear it coming at all, then suddenly it is wrapped itself tightly about your heart, making you think that YOU decided to make these choices, that this is what life is—get used to it!

The desire thumps just as hard within my breast; it urges and pushes with a pressure I can hardly keep down. So these days, I smother it; cover its noise with the variety voices vying for my inner ears.

Why? I have theories, but no answers. So much in life I wanted seems locked forever out of reach. The constant feeling of sadness that accompanies this awareness is too painful to keep in mind. What can I do, I ask myself; what is it I want? That’s half the problem—I’m not sure I have a clue what the hell I want anymore.

I suspect fear crept in at some point, garbed in a new disguise, one of safety. I cannot see it, I don’t know from which direction it comes, or where it plans to feast next, but I do suspect that the act of living with fear, and not always fighting this demon successfully, has created in me a state of constant compromise.

I tell myself it—whatever it is—is not so important. I tell myself that I am grateful for what I have. I am grateful that I don’t feel ‘that’ badly, that I am not doing ‘that’ badly. And where I cannot see it, the anger builds, until it surprises even me, rushing at my throat with fangs, filling me with rage at life, at self. I am so sick of the guilt that keeps me having a knee jerk reaction of being grateful. Since I can’t do anything about where I lay physically, I try to use logic to simply accept it. I try to see the bright side. I try to be appreciative of how well I am doing. If I don’t do this I’ll only whine, and the guilt is overwhelming. So many face far worse, with far greater grace; this will forever be true.

The man complained who had no shoes, until he met a man who had no feet—and all that jazz

But in reality, I’m pissed as hell. And I suspect this anger is at root for my splintered selves, the fear, the rage, the hopelessness. So much easier, I seem to express, to accept, to push back desires that may be beyond reach, to place dreams into the darker hidden corners of the heart, and just accept. What is, is; what isn’t will likely never be. A frightening thought that is, to find that dirty little crutch in my hands. Because when I am truly honest with myself, I want both shoes and feet, and the ability to feel, without guilt, remorse for what I have lost, joy in what I steal away, and happiness at what I can claim back into my own.

And I want even more to stop accepting the “is” and start again, as I used to long ago, to reach and live in each day. To celebrate all that can be celebrated. The choking off of hopes has also smothered desire.

This isn’t apathy, or ennui that I speak of, it isn’t a state of non-caring, of emptiness. It’s an all out war inside, amongst these voices, and the spoils are my soul. It isn’t a battle I can sit idly by and watch, for if I do so, I can assure you that defeat is all that will be had.

Fuck doing what is right, screw being grateful for what is, to hell with acceptance and grace. I’ve always been a scrapper, willing to gnaw my way through the bullshit and back to life. The terms I somehow accepted unawares are not acceptable. There is no sin in wanting; no evil in remorse. There is no reason for the feeling of constant guilt and of feeling so let down by myself. But there I shall stay unless I take action.

Guilt, fear, anger, rage, sadness, resentment: all these things must be allowed, so that I can face them, and walk away, in awareness, not in denial of their existence. So that I may move forward clearer of voice and head, more pure in thought and heart, on paths, no matter how petty or great, that will feed my soul, and create a life, a life not half-lived. They are but more faces of fear, that bitch of endless facades and even more endless paths to destruction.

Problem is, I just don’t have a clue what to do about all this. I distract myself a thousand ways, I have occupations I care about, chores enough to fill many days (some of which I never do get around to). It isn’t an activity I seek; it isn’t a need to be busy. I am too busy, if you ask me, or I’d have never reached this point unnoticed, due to being distracted. Its deep food for the root of my soul that I have neglected; the single pure voice of self that I have defiled by simply ignoring it, drowning out its cries amid a million daily time takers.

Worse, I have begun to allow things only half-important to me to start shaping my sense of self. It seems as though with the loss of that one true inner voice, the one straight from my soul, I am not just lost in how to live, but am left wondering who I am. I stare at my reflection and feel surprise at the eyes that gaze back at me. Surprise and disappointment.

Once upon a time, I knew who I was, I knew where I stood. These days I find I’m consoling myself by holding up accomplishments that while meaningful, are not a replacement for my sense of value, should never be viewed as more than add-ons to the Niki machine. What I do lately seems to be all I have left of my pride and sense of worth. I feel no value inside, or I would not feel such pressure to hold firmly in my minds-eye my abilities, to label my worth by what I can provide, what I can do. At this point I wouldn’t put it past me to create a list of nonsense reasons why I am valid: Which would just be truly pathetic.

It was never that way before. I have replaced my sense of core validity with a mirror, seeking validity from the world around me, judging myself by the yardstick of others. I was never such a meek and weak creature in the past to use such measuring tools. I lived, and I was full of life, even when going through hell. I knew me.

Even sitting dead still, I knew I had worth, and had my arms tight about my soul.

A new life must begin, even if at first it is forced and cramped and uncomfortable. These terms I live under now, this turmoil and confusion, will eat me whole while I sit still, if I let them. I must rearrange my life, and my mind, yet again, to find a new way to live. Trial and error shall be my route. Nourishment is sought, before I have starved the core of self, before I allow the silencing of my heart to be complete.

But maybe I’ll start after a nap, and some down time; maybe after a cup of tea and some light reading to bring my brain away from feeling. Maybe after a joint, a glass of wine, a movie…. Maybe never, at this rate.

NP

The entangling threads of my nightmare still linger, whispers at the edge of my hearing, tickles against my face, my throat, a lingering feel of inescapable realities that lead me to the edge of that land, to this area where I stand, halfway in between.  My feet step, my face looks out at the sunny day, my pets snuffle and scurry between my legs, but still my heart races in urgent fear, and the eyes from the dreamscape follow me, felt in the little raised hairs against my neck.  From somewhere behind me the dream still reaches through, darkening the corners of the sky, lurking in the corners of my room, of my mind.

A few weeks ago I got a geranium, a bitty little thing, with just a couple blooms on it--one of the sadder from the sales lot, really--but gads of buds dotted the plant, with the promise of exploding into a riot of petals that now has become a reality.  I placed my dreams in the flowers hands, it’s purpose a sort of dream catcher, a safety valve between myself and the haunting of my overactive nights.  And so far, the little bugger has done a pretty decent job of keeping the worst at bay.

Why geraniums, you ask?  Why on earth would this science brained geek-girl do such a thing as to place her dreams in trust to a funny little plants, the very same plant that once was a major decorative feature of her grandmothers back porch?  Good question.  It all goes back to dreams, in my usual way of convoluted logic. 

In years gone past, in the midst of wondering over whether or not I was losing my mind, while writing perhaps the ugliest of my ugly fiction for an even more vile customer, I dreamed of geraniums.  While feeling my body rot from within as I faced cervical cancer, to feeling my mind play victim to the sewer of violence that I was creating from this ugly customers psyche and desires, I reached a point where the nightmares were so extreme, so vivid, they pushed through the barrier between wake and sleep, leaving me unsure of which horrors were real, which I created, and what was real.  

Oh, I knew very well what events were real or not; I was not hallucinating, mind you.  Well, not yet anyhow.  It was the feel, the residue, the eyes pressing into me from a corner of nightmare land, lurking, laying in wait for my return, preying upon my sense of safety, my ownership of my own mind and emotions.  Unlike the usual dissipating of powers that occurs after nightmares, as reality crunches them under sunshine, and the memory of the events and the terror once felt fade into ’just a dream’, these nightmares lost no power through time, space, and light.   The physical pains I suffered in these dreams, during this period, night after night after night, would feel sore and bruised in the very light of day.  A piece of hell came back with me every time I awoke. 

This has happened off and on throughout my life, but at that time, it was an endless event:  wake, sleep, wake, sleep, one bled into another into each other.  What I wrote was as horrible as what I dreamed; what I feared in reality was as terrifying as what dogged my heels in nightmare land.  At that moment in my life, there was no escape, as each fed into the other, and little by little I felt my sanity buckle under the pressure of fear, felt my mind fray and scatter.  Under this assault without end, I began to feel that it was becoming one endless event, that no longer needed to fit logic.  What use is logic in the realm of fear, when reality has become a tenuous thread at best? 

I tried to not sleep for a time; that was a useless attempt.  I tried to sleep all the time, thinking that my fears and the feeling of rotting from within were bleeding into the darkness, where they were set free to torment my mind in a place where I had no control.  The idea of my body diseased from cancer, the sense of my mind being swallowed in the rotting cesspool of this customer’s desires, these were the daylight terrors.  The idea was that if I could escape the thoughts and worries and input that filled my daylight world, perhaps I could hope to catch a few dreamless, lovely hours of true escape in sleep.  That also failed.

At that time, we lived in a home on Maui, built way up on the sides of the volcano, in the midst of lava fields, in a forgotten area that once was the village of Kanaio, where all spiritual workers and healers from the ancient Hawaiian and Polynesian nations were sent to learn and study, live and grow.  Our home sat in the ruins of this village, the old stone walls and cistern still stood, the graves of ancient healers and the royalty still lie in the lava tubes around the home. 

All native priests and priestesses were sent to live there in times now mostly forgotten, to refine their arts, many sent from early childhood.  The spiritual strength of this area could be felt within, could be experienced in the ancient whispers carried on the howling wind.  There are no words that will express the feel of magic in this landscape.  This is the real magic of nature, of energy; this sort of magic is neither benign nor malignant, not friend nor foe.  As nature is, it simply exists.  It holds within it both creation and destruction, without partiality. 

If I had to quantify it, I would call such places as the birthing seat of universes, as the raw core of energies expressed and prima materia living in every cell.  This is a place where Darwin could wonder over the constant surprises of evolution and still keep a sense of glee at all that science has not yet quantified into words or numbers, of all that may make people reach to the heavens towards the idea of gods.  A land where ideas and emotions were as solid as the miles of lava rock under your feet.

After yet another day, week, month, of these never ending nightmares, in the midst of an especially violent section of the story, my mind deep in the customers ugliness and my own fears, I snapped.  As I stood in the kitchen, not yet really awake, but no longer asleep, stuck by now in this half-there state and truly exhausted, the lines between the two states of being faded. 

As I watched, blood dripped across the counters, spilled over the floor, even crept up the walls.  Not down:  up!   As I watched, I knew even then the difference between what came from my haunting dreams, and where sat the world of ‘awake‘.  Logic of reality argued with what I was experiencing.

The blood was as a shadow, it lacked substance.  I could see the untouched solid kitchen as if through a screen of the nightmare vision.  My mind fought and argued with itself, seeing everything darken, watching it all swallowed by this blood, hearing the roar of what seemed a river of blood in the background somewhere, my heart hammering at my ribs.  I collapsed on the floor in sobs, rubbing hard at my eyes, trying to make it stop, make it go away.  I was just as afraid of opening my eyes as I was closing them.  I knew that all sat normal in my kitchen, I was not insane, I knew the image of blood and the bare whisper of screams from what sounded like a land far away came only from my tormented mind.  I slid to the floor and sobbed, unable to go on, unable to escape the claws of the nightmares and the dreads of realities.  They had become one entity.

I gave up and lay in bed until exhaustion finally led me back into sleep.  And then I dreamed of geraniums. 

I was back in the darkened alleys and abandoned buildings of nightmare land, but scattered amongst the dead and ruined scene were these geraniums, growing in the oddest of places:  out the tops of rusted car hoods, blooming in the middle of glass littered asphalt.  I was alone in the dreamscape, all alone--no eyes watched from hidden corners beyond my sight.  Each time I saw a geranium, --pink, white, red, it mattered not,-- I knew in the dream that the way I walked was safe.  I traipsed the dangerous terrain with a growing sense of strength and security, as the flowers and fat leaves marked a safe path for me.

I took me several hours after that nap to scrape the courage and willpower up to get back to writing.  The last thing on earth I wanted to do was continue with the story.  It was bleeding, literally, into my everyday, it was seeping and creeping and eating at my peace of mind.  But I finally did--I had deadlines, I needed the pay, I had bills past due.  I could see no way to walk away.  I decided I would simply spend the rest of the day editing the work of the weeks before on this horrid novella.

As I read, I started to realize that I had written the word “geranium” several times in the story.  It was completely out of place; trust me, the story has not a single flower to be found in it.  This was not a day’s event:  I had unknowingly stuck this word into the oddest sentences--it made zero sense.  I had apparently been doing this for days, I have no idea how many. 

That night, as I lay down and sleep started reaching to me, I pictured the geraniums from my grandma’s porch.  A small residue of the childhood safety that we lose before age 10 crept inside me.  I had no dreams that night.

Needless to say, perhaps, this was the very last story I wrote for that customer, or for any customer.  I would later reclaim my words as only my own to use, from my self and being and heart, and find another way to try and pay the bills.  After that story, I have written only that which comes from within me, to this day.  Never again will I brave the darkness of another’s ugly desires.  The cost is far too steep.

For a few months after that, when nightmares would come, I would look around me in my dreams, until I found it:  the geranium.  It wasn’t always there, and I didn’t always have the mental self-control to see or look for it--lets face it, when you are in full flight from the boogeyman in a bad dream, thinking to look for a geranium isn’t generally a first thought.

As time went on, I lost the secret of the geranium, only very rarely remembering what it had done for me.

Nightmares are one of my personal curses.  For some reason I have been chased through dreams for most of life, hounded, harried, beaten and bruised.  Whatever you would never want to experience in the waking world, my dreamscape provided in spades.  

Skipping the long story, a friend recently suggested I buy a flowering plant and “keep it alive” as part of a deeper delving into reiki, tai chi, breathing and visualization exercises all aimed at improving health, inducing greater melatonin and serotonin production, increasing oxygen absorption, keeping immune functions in great shape, keeping white blood counts pumping, dealing with stress to minimize health impacts, and much more.  So of course my first thought is a geranium, as the entire ‘geranium‘ experience of the past came rushing back to me.  When you dream like I dream, any straw you can reach for in hope will do just fine. 

Without saying a word about it, I secretly assigned this little over-stuffed pot of healthy red flowers and bright green leaves the job of standing guard between me and my dreams.  I never spoke the intent--this entry is the first admission ever that I may have pinned such a silly seeming hope onto a simple flower.  It’s just not the sort of thing I would normally do, let alone admit to doing; me who sees magic and religions as mere human attempts and failures to quantify a scientific state of being, of laws and existence, that we simply are not advanced enough to understand or label yet.

Each morning when I awaken, I sit by this geranium and count its new blooms, watching it grow so fast and so well it seems almost to have fed on my un-dreamed nightmares that it swallowed whole.  It’s near to busting out of it’s little pot. 
Do I believe that a pot of flowers can protect me from my mind’s own demons?  No.  But I do believe in the mind’s ability to incorporate such ideas into functional tools for self-management.  I do believe in our ability to use ideas and concepts in a much deeper and applicable way that has nothing to with logic and everything to do with emotions and what some may call the spiritual self.  The scientific realities matter not a bit when one is attempting to battle a dreamscape, after all.  Good luck convincing yourself that the dogs eating at your flesh while you dream are not real while in the middle of the terror. 

So I am raising a guardian geranium.  It makes as much sense as anything can when dealing with a recalcitrant subconscious.  

And yes, since I got the geranium I have had far less nightmares than my usual quota.  Those that I have had don’t impact so greatly, they lack the power to bleed into the daylight, lack the force to follow me into the waking world.  If it’s just a silly mental panacea that in reality is nothing more than me screwing with my own head, well, I’m just fine with it.  I’m just fine with anything that has me getting some blissful blank sleep on a semi-regular basis. 

But last night’s was a doozie, I’ll tell ya.  And not a geranium was in sight.

Most of it I don’t even remember:  tendrils and twisting vines, hairs, plastics and metals and me trapped beneath this swirling pile, the pressure mounting, my heart drumming, dirt falling into my face.  The world grew further from me, and further still, and soon I saw only a piece of sky in a rectangle above, the edges loose, a rough cut rectangle, blades of grass and chunks of earth along it’s edges, the sound of voices from above as I dropped lower and lower.  It was the worm, and a set of toes, as the roots from a neighboring tree reached for me, grabbed at an arm, that made me suddenly aware that I was inside a grave. 

I felt the same paralysis that comes over me during a seizure, the same desire and physical push to move without the ability to do so that I experience with the muscles that simply don’t work no matter how hard I try, that have been ‘switched off’ thanks to the brain tumor.  The feel of paralysis is indeed its own sensation; it is not the ‘lack’ of sensation. 

I lay in that grave, watching the world grow further from me, the sky narrowing in it’s little rectangle, the sun reaching towards me less and less, as I slowly slid toward a darkness deeper than anything I have ever seen.  The cold ground was beneath my back as I stared helpless at the sky, and even in the dream I felt the cold creeping inside of me, grabbing onto my sides, sinking into me deeply.  I pictured this cold of death even while in the dream, as reached into me, colder, colder, colder.  The tendrils of weeds, of roots, wound about me, snaked about my throat, prodded at my eyes. 

I tried to call out, but my voice was as paralyzed as my body, frozen and locked inside.  I could feel the earth beneath my back moving ever so slightly as the bugs that would soon come to clean my bones started to move in anticipation of a new meal.  I would try to breath, pulled as hard as I could with lungs and diaphragm to draw in air, but none would come.  I was panicked that I could not breathe, even as I was aware I didn’t need to.  My slack lips held small crumbs of moist soil which I could taste. 

I could hear friends and family as if from far away, knew they were up on the grass, around this grave in which I lay.  The claustrophobia was intense.  The sense of paralysis was terrifying, the inevitability of what would be next had me trapped in my body in a panic that tore my mind to shreds.  I sobbed in my sleep, knowing the shovels of dirt were about to fall across me and there was nothing I could do to stop it.  And the tears wet my cheek, dripped across these roots and vines, made mud against my ears.   The eyes of an unknown watcher, a spectator, in my mind Death as an entity, or perhaps no creature so powerful, a smaller guardian, a curious spirit that feeds off fear, bored into me.

I was still sobbing as I awoke. 

The eyes I still feel as I type; the sensation persists that if I turn around quick enough, I may catch sight of this onlooker with too much morbid interest in my nightmares. 

I think I need more geraniums.  And maybe a fat bottle of wine.

NP

May is national Brain Tumor awareness month, kids! 

The latest in the fight against Casper and other nefarious mutant brain hijackers-- Please help our efforts:  pass the word, join, donate, or just show support.  This effort will have a big impact on my life and the lives of countless others.  Many orgs and individuals have banded together and created "Heroes Of Hope", part of the grey ribbon crusade.  This collaboration will give us the ability to speak with a unified voice, to effect serious changes and assistance for research, patients and awareness of this ugly and devastating disease.  it is free to join, all voices appreciated and heard.  here's the news on it:

Grey Ribbon Crusade ™ Promotes National Unification in the Fight Against Brain Tumors

Encouraging People to Become Involved During May’s

“National Brain Tumor Awareness Month”

WASHINGTON—May 6, 2009 — This week American Idol, David Cook and his family shared the sad news of his brother’s death from a brain tumor. Unfortunately many other families will suffer this same type of loss -- over 200,000 people will be diagnosed with a brain tumor in the United States this year. In an effort to bring awareness and ultimately find a cure, the newly formed consortium known as the “Heroes of Hope” announce the debut of the Grey Ribbon Crusade to commemorate National Brain Tumor Awareness month. Over 200 individuals and 48 not-for-profit charitable organizations representing all 50 states have joined together to solidify the presence of the brain tumor community while raising the level of awareness and funding for brain tumors.

Like the well-recognized pink ribbon for breast cancer awareness, the grey ribbon is the symbol for brain tumors, which are the leading cause of solid tumor death in children and affect over 200,000 people each year. People and organizations can join the cause at www.greyribboncrusade.org . There is no fee and everyone who joins will receive a grey ribbon to wear in an effort to spread awareness of the cause. 

“The work the medical community can accomplish in its quest to find a cure for brain tumors is greatly enhanced by the involvement of organizations that make up ‘Heroes of Hope’,” said Henry Friedman, MD, Deputy Director of The Preston Robert Tisch Brain Tumor Center at Duke. “Now having one cohesive resource across the nation brings more focus and strength to this cause.”

The Grey Ribbon Crusade seeks to create dynamic action in the drive for funding of brain tumor research through a united force against brain tumors. The goal is to increase visibility through a strong national brand; allowing for the utilization of a combined scale of accomplishments and resources, while preserving individual and organizational goals without additional financial commitment.

The Grey Ribbon Crusade website allows members to post research requiring immediate funding, events and meetings as well as shared ideas and resources.  It also provides a venue for individuals to become active in their community by partnering with the nearest not-for-profit member.

The Grey Ribbon Crusade was formed after three existing charitable organizations dedicated to brain tumor research began assisting each other in distinct areas of each other’s missions, while still continuing in the specific direction of their own goals. Realizing that unification carried many benefits toward finding a cure for brain tumors, they launched the “Heroes of Hope” Grey Ribbon Crusade.  The concept continues to grow as those touched by the disease join forces and take action toward a cure. 

The group’s first fundraiser, a national text message campaign, "Hope for a Cure is at Your Fingertips" allows you to text “BRAIN” to 40579 on your cell phone, and automatically donate $5 to brain tumor research. The one time $5 donation will be added to your mobile phone bill.  Verizon users should make their donation at www.greyribboncrusade.org/donate. For information please contact DNL1231@aol.com or call Lisa Kaminsky Millar at 1-866-48-4CURE(2873).

ALSO!!!  help us get awareness going, show your support for us! 

Get Your Gray (and Grey!) On!

Brain Tumor Awareness Gear for the Month of May — National Brain Tumor Awareness Month

May 1, 2009—Nationwide—As you know, May is Brain Tumor Awareness Month, and the mother of brain tumor angel, Jessica Randall (Forever 17: http://caringbridge.org/visit/jessicarandall) has created some gear to help spread the word. There are shirts, buttons, magnets, caps, mugs, mousepads, and other products to honor all of our brain tumor warriors and angels.

It was originally only intended for our youngest BT warriors and angels, but due to popular demand designs have been added for adult BT warriors and angels, as well. There is a special section featuring products with pictures of over 120 of our youngest BT warriors and angels.

The products are available here: http://cafepress.com/btwallofcourage ... You'll see a link on the main screen for the Adult Gear (it's also available by clicking a link at the bottom of most every other page on the site). There is gear for Fathers, Mothers, Husbands, Wives, Survivors (Had/Have a Brain Tumor), Brothers, Sisters, Sons, Daughters, Cousins (boy/girl), Grandmothers, Grandfathers, Granddaughters, Grandsons, Uncles, Aunts, Nieces, Nephews, and Friends (boy/girl).

grayribboncrusade.org is featured on all of the Adult Gear so that people can go somewhere to learn more. (wallofcourage.com is on the Kids' Gear.)

Proceeds from the sale of these products will be distributed among the following:

Jessica C. Randall Memorial Scholarship Fund (http://teacups.nu/extra.html)
Children's Brain Tumor Foundation (http://cbtf.org)
The Brain Candy Project (http://braincandyproject.org)
Jacob's Smiles (http://www.jacobssmiles.com -- site not functional yet, but I think many of you know Christine and her son, ^Jacob^: http://caringbridge.org/visit/jacobwilliams.)
Aimee's Army (http://aimeesarmy.org)

Get Your Gray (and Grey!) On All Month Long!!!! In fact, let's wear it year-round!

NP

Central New Jersey Regional Brain Tumor Conference

DIAGNOSIS BRAIN TUMOR:
YOU ARE NOT ALONE III

Saturday, May 9, 2009
8:30 a.m. to 5:00 p.m.
Pre-Conference Support Group Meeting
Friday, May 8, 2009
7:00 to 9:00 p.m.
Hosted by:
The New Jersey Neuroscience Institute Brain Tumor Center
at the JFK Conference Center
70 James Street
Edison, NJ
Click HERE for maps and directions!
Click HERE for conference brochure!
Click HERE for Conference Flyer!

Cost is $20 per person in advance,
$30 per person at the door!

If you can not afford to pay, scholarships are easily available. Ask here!

a reminder.  this one is near me, i'll definitely be there.  I'd love to connect up with anyone also attending!  I'm already working on questions.  I love these conferences, not only for the communion with my fellow toomer peeps and fam, but for the hands on access to the experts they provide.  this one is during bt action week, a second reason to show my face and support!  anyone going?
Conference in New Jersey
May 9th, conference, 8:30 am to 5:00 pm
May 8th, pre-conference Support Meeting, 7 pm to 9 pm
"Diagnosis Brain Tumor:  You Are Not Alone III"
Hosted by and held at:
The New Jersey Neuroscience Institute Brain Tumor Center
at the JFK Conference Center
70 James Street
Edison New Jersey
https://www.virtualtrials.com/nj2009/conf2009.cfm?CFID=112351&CFTOKEN=9e7d88c0cdbc2255-42D21623-B752-1C99-BF4AD22615FCFDC0
Keynote speaker Henry Brem M.D.:  Neurosurgeon-In-Chief, The Johns Hopkins Hospital; Harvey Cushing Professor of Neurosurgery, The Johns Hopskins University School of Medicine, Baltimore, MD
Session with Ben Williams, of "Surviving Terminal Cancer", GBM survivor
Sessions with top specialists:
Newly Diagnosed--Now What?
Coping, Fatigue, Quality of Life Concerns and Seizure Workshops
Minimally Invasive Neurosurgery
Neuroimaging--Understanding what scans can show
Meditation
Sessions for caregivers, "What Caregivers Need To Know", "Home Care, Rehabilitation, Hospice Care"
TBI Fund and Financial Assistance
Skull Base Surgery, Meningiomas, and Acoustic Neuromas
Activism and Raising Brain Tumor Awareness
...and plenty more.
Open floor Q and A session with the pro's, at the end.
reps from Novocure are among those attending.  there's waaay more than what I've outlined here.
there will be a "Wall of Remembrance" to honor our survivors and lost angels.  please follow the link and contact to add your or a loved ones story for this.
continental breakfast during registration; lunch provided (i hear with live music).
https://www.virtualtrials.com/nj2009/conf2009.cfm?CFID=112351&CFTOKEN=9e7d88c0cdbc2255-42D21623-B752-1C99-BF4AD22615FCFDC0