A new Thought

MARCH 16TH 2000

• Whew! - A new piece of paper for me...and a familiar one from before. A current journal. So, when I say Rambling Rat, what do I mean? When the Doctors, in the middle of trying something on Rats, are told by the FDA...use humans...well, this is me. Not because I am a do gooder...8 studies...but I did recognize that some things were not going to help me NO MATTER WHAT! And, I had to get off the kick of begging for control.. better control. Nope, I was one of the few % that Medicine was needed (sure does) but not total help....I went all the routes. First, I looked up every person who had a seizure condition, that was famous, and latched on..saying to me..."See"....while my brain said "So"... Anyway, it was determined Research was a thought...as long as I understood that this was not a rose garden...but a seed planted to see if it would grow. I would come to the Medical Support BB and say..."Yeeeeesh...it isn't working" and I could picture in my mind, thousands of pieces of kleenex handed to me through drive A. All my stuff, silly, thoughtful...came here. Eight years ago, I went in to my first study, the Nuclear Imaging Machine and when wheeled out, said....CUT my head and LOOK" and they said. .We can't see anything. "You are idiopathic!" My first Rat OY came out. So many drugs, now approved....and the Vagus Nerve Stimulator? if you could have seen me during the thought that Kaiser told me..."go to University of Southern California" I came to the board and said..."PEOPLE let me tell you a what for!" Back came a not from a fellow BB writer at Neurology saying..."GO LISTEN" Well, I respect the people here at the board tremendously, so I went just to listen! There sat Dr. DeGorgio with a device with wires, a battery, yadi yadi...the works by Cyberonics. called a Pacemaker like device for the brain! Dr. DeGorgio beamed..."ah, Shirl, I want to plant this"! Looking out of his window, looked for WHERE it would go in the dirt. He said..."silly you...it is going in your chest with an electrode!" "HUH?" Well, Chris Rich had said GO...and he was a Prodigy Board Writer...and a study person in Florida...so...I was surgically planted. Seizures for me came down from about 50 every weekly cluster to about 4!....Gosh, now FDA approved, the VNS System is beginning to pop up....Epilepsy...Parkinsons.....it's like POINT the electrode to the sick Neuron...and do not pass GO....without collecting a magnet, etc. Bottom line, as a Trial Rat that meanders around with my sick head, this is, for me, the ONLY way to see things tried.....remembering Gang...YOU have always been here when my Rose Garden did not blossom...and Bory gets tired of hearing me cry....so, I open my new writing with a few Thank you.....THANK YOU LAUREL for making space for me...THANK YOU HUBBY for just putting up with me, my helmet, the works! Thank you Prodigy for supplying a place for me to share and have others share, when for me, it is absolutely necessary OK. Many have not had an easy time with illness etc.

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  April 21, 2000

  UNABLE TO LOOK BACK

I don’t think of Holiday’s as a youngster, very often; when I do, I find memories gone. Did I color Eggs for Easter? Say the Prayer for Passover? Or getting even more basic…when I was a kid, did I sharpen my pencil? Own a ruler? Nope. All I can remember is the Library in Chicago. The Douglas Park Library where I use to think the carpet was licorice. Black, indented- tangible. My prize possession was a card that the Librarian stamped with the back of her pencil. Now, where I took that book, where I read it, I can’t remember: no memory. So often, someone will say to me…”When you were a kid”…and of course, I try. Everyone wants a childhood, right? Memories, it is said, is the “stuff of Life”; well, my stuff isn’t here. It isn’t a disease, it was just that I grew up with no one….and everyone. That is the past. I am proving that unless one needs medical records, who needs a childhood? I grew up quite ok without having one…No One will ever get tired of hearing me say. ”When I was a kid”. As a grownup, an adult, a non-kid person, I have to believe that I am not a novelty. Seizures did not drive family away; My being born did. So, any and all, fighting a chronic ailment, and having non-family support, backing, love well, it was never there, making room for other forms of expression. No matter how old we get, in the future, a terrific memory holds. Bory, my hubby…his parents…my memories started years and years and years ago after I really joined a family. Hugs Shirl

HUSH NOW

11/13/00