Entry Twenty-six: November 25, 1997

"Fearing Me"

Many, many people have yet to overcome the fear of an Epileptic, especially a seizure! It is not a pleasant site. I imagine... for the Grand Mal, jerking the body; For the Temporal Lobe, a slight jerk, but drooling behavior, I imagine. And the Petit-Mal-- staring without answering the questioner. Most of the public becomes afraid. Now, breaking this down a bit, let's take another look... Opening up today's newspaper, The Los Angeles Times reported another trial in the death of a 3 week old baby, by a marine and his dog, and falls to the floor. Another, same page, a military man killed by a robber. The front page has its traditional mugging, killing, painful childhood experiences. And this is one little section of one page of one city paper. And the public is afraid of us? We, who in the course of events are hurting ourselves. I tote a dilantin pill for medicine. That I swallow for better control. Yes, fear of my having a seizure hurts? It is quite amazing what the daily paper brings forth: horror after horror done to children, other individuals... and yet, it is me feared! I don't see on an employment or insurance application, the question, "When did you batter someone in your family?" No, that is never asked. But me? My seizures? That is a routine on a questionnaire, .which hopefully, should get us to think about ourselves. Are we going to fear people and disabilities? Or are we going to realize that just having an ailment does not give us "Out of whack mean genes?" Hugs,

Entry 27:

Shirl and the Clauses

Written in September, 1997, saved for December, to be read and enjoyed all year long! Living in Anaheim, California, the first week of September, 1997, I have been thinking two things. 1. Whew..when is this HEAT WAVE going to end? 2. Santa and Mrs. Claus, known during other months, as Dixie and Preston Hibbard. Yes gang, I know this is not December... but that's what I'm thinking of. South Coast Plaza, a mall near here, is where they listen to dreams of all kinds. Dixie and Preston, my all year friends... we meet for lunch during their stint as Christmas folks. Dixie dressed as Mrs. Claus. Preston, beard and all, as Santa. We meet for their lunch hour, leaving their costumes and makeup on, we walk around the plaza to the coffee shop. Staring at us is customary...and for the one time a year, this gal with the hockey helmet, football vest and gear, blends in. The stars are Santa and Mrs. Claus! For me, watching other people get stared at and pointed to, is such a great experience. I can stand back and watch. Here is Shirl, at a very fancy mall, not being looked at. Oh what a wonderful experience. And, as friends, I believe Preston and Dixie do this. They keep the gear on during lunch to show me there are good stares and bad stares. I use to be so touchy. Many Christmases ago, that stopped. I just blended in. My daughter Pam, with many friends from Disney - Deon, Debbie Aumier, the Hubbards, etc. are clowns all year round. Funny clowns. Funny clowns. When I was in the Hospital and when Bory was in the hospital with his heart surgery... each time the clowns appeared. They blew up animal balloons, brought baskets of balloon flowers, twirled to the cheering of the people who watch over death everyday. What smiles we all had... watching a heart surgeon come out of O.R. for his balloon!. And so, in this heat spell, I think of XMAS. Walking with my friends, my helmet no big deal to me, and watching kids and grownups run up to shout out their wishes. Being a grownup is fun...and selfishly, giving birth to my very own clown, Cuddles (Pam)..I can get a balloon any time I want one, or need one to cuddle. Hugs,

Entry Twenty-eight: January 3, 1998

"My Electrode"

With de-regulation happening, causing utilities to fight over my wiring, one thing is safe and unusual- my electrode. My electrode is surgically implanted on the left side of my neck, and comes with parts. Starting at the beginning, because my electrode needs explanation... My Neurologist, Dr. Chris DeGiorgio of University of Southern California, Neurology-Neurosurgery happened in to a company called Cyberonics! They had just invented a Vagus Nerve Stimulator, which is plopped surgically over the collarbone. One stimulator (looking like a doorknob) was also implanted... one battery and one electrode, with a magnet, all built to study how this affects seizures in people like me. (About 20% not controlled by drugs...and the injury too deep in the temporal lobe for surgery) Thus, Dr. DeGiorgio became a Chief Investigator and since research was always my vehicle, a call came in for my head. Although the equipment to be implanted was going into the neck and the chest, my electrode and battery are pointed at my neurons. I am a Model T, a beginning of a concept that will affect all people with a neurological problem in some way. Imagine me though, several years ago, sitting across from Dr. DeGiorgio's desk, as he sprawled out the equipment. I was going to be like the Electric Bunny... or as the people with heart pacemakers of years ago... a trial. A Brain Pacemaker. I earnestly watched Dr. DeGiorgio, and stared at the wiring, the battery, the stimulator, and a gleaming magnet to boot. As he described how this would be a trial, non-FDA approved, I thought of the Pet, the MRI, the CAT... diagnostic tools I had tried just a few years ago...and now...this? Having about 60 seizures, partial complex, every two weeks with meds not helping, ..I thought, "Okay, I have been brain mapped, phased, the works...why not?" Thus, as I was writing about electricity, my own turns on every 5 minutes for 40 seconds, contacts a brain cell and zaps it down. Since the implant, the seizures have gone waaaay down... maybe 7 every two weeks. For me, a miracle! The FDA approved this in October, so I am electrically approved. I have seen stroke, Parkinson, most movement disorder attacks, Multiple Sclerosis, re-awakening brain cells... the Medical Move is on. This is one grateful person who wanted to say, "Yes, miracles do happen." Flying his kite, Edison said it. Now Cyberonics, Dr. DeGiorgio, USC, the Veterans Administration... I tip my hat to all who helped me believe that the Funny Farm had not taken over. Statically yours,

University of Southern California Epilepsy Program The USC Vagus Nerve Stimulator Program Cyberonics

Entry Twenty-nine: January 13, 1998

"Wishes Do Come True"

Most of my life I had three easy wishes. 1. No seizures 2. To be organized 3. To have a clean, spotless house! At one point, I guess God must have looked at my wish list and said. "1. Nope, someone has to have seizures, I can't grant that. 2. YOU organized? I am only God and there is a Mountain range that needs attention. 3. A clean, spotless house? Granted! Next time you have a bunch of seizures, or something of the order... YOU, Shirl Rapport, will get wish #3. Now, gang, you have to know that He didn't tell me their were strings attached. That string was my Son-in-Law at that time, a new Immigrant from Israel, married to my daughter Pam. In the beginning Pam and Jackie lived with us. This was 1984 or so. I had just left a round of brain mapping at UCLA, and my Hubby had just had heart surgery. Jackie said, "Mom, can I straighten?" I nodded yes so fast, ignoring Pam's looks. She pulled me off to the side. "Mom, oh no, you have no idea... no idea what is about to happen!" I smugly thought, "The kid wants sex? all the time?" So off I went to visit Bory at Coronary Care, then had coffee, so happy that my high book shelves would be dusted! No bacteria when Bory comes home! I was gone three hours, and my wish was taking place! On the lawn were the book shelves, the books - hundreds, the couches, the chairs, the mattresses, the dishes..everything out of the house! I looked in my back yard. Yes, there were the lawn chairs, the pool, and the rest of our furniture, pots, you name it... even my beloved micro-wave oven, unplugged with the fridg! Both stood outside like fallen soldiers.

And; there was Jackie, toothbrush in hand, pail and water, scrubbing one item at a time! with the toothbrush, to be sure nothing was missed! I jerked him to the side..."Uh son, no... you know I meant make the bed... you don't have to do this. Please STOP. Jackie looked at me, "Mom, this is how I straighten!" I told Pam, "Uh, this is my house... albeit everything is outside, but it has to go back in. Table, chairs, lamps... NOW. Pam said, "Mom, I warned you." I looked up at the sky. "Oh God, forget any wishes. Don't think about seizures going (he didn't), or my being organized (He didn't} but PUT ME BACK together." Well I was, over a 5 day period, piece by piece... clean... spotless... EVERYTHING. And if my elbow brushed against something, like a table to lean on while I cried... well, I didn't have to worry. God and Jackie had added to my wish. My elbow was scrubbed! A lecture given. Thank you, God. But Jackie would look at me on occasion and say with cloth and pail in hand, "Mom, is this not nice?" When Bory came home he looked around and said, "Naw, not you." It lasted for about two weeks. Then, it started with a paper thrown on the floor, a book case revolting and gathering dust... Jackie had gotten his Green Card, was now a U.S citizen, their own apartment, and my wish list down to one. Maybe...no seizures....but do I trust? Strings could be attached so settling is better. A side note- When I visited the Pacific Stock Exchange, I asked Bory what paper trades that were finished, were doing on the floor. "This is The Exchange!" Bory looked at me and added that this is what traders do to PROVE ownership of the floor. When we got home I took a small piece of paper, crumbled it... Bory asked,."What are you doing?" "I am telling the floor, 'I own you.'" Finegan, our dog, came thru the doggie door, saw the paper and looked at us. I said to Finegan, "Don't ask." Hugs,

Entry Thirty: January 20, 1998

"No Matter What"

I am the perfect example of "No Matter What." For example: of the small percentage of people who do everything... EVERYTHING to stay AOK, (fight the fight, walk the walk, etc.) my brain wave is going to still do whatever it wants! Every time I try a new medicine, a new procedure, a new activity, my brain wave, at will and without warning, will go Kerplop... seize! Today I am leaning back thinking, "WHAT CAN I DO?" really knowing the answer: "NOTHING." I have tried it all. Gang, you know I have, and yet I am the first one to disappoint myself! The first in line! This morning while at e-mail, I turned off to watch the news. Bory asked me a question re my e-Mail and I just didn't know. Were there 3, were there 4 e-mails still unanswered? If I can't remember something, that is the first sign of seizure activity. That was this morning. Here I sit in the early evening, still thinking about that seizure. Was Bory right? wrong? Did I shrug? Who knows... but these are again the questions of a newcomer to this ailment, Epilepsy. And after 43 years I can hardly call myself a newcomer, huh? Will I ever stop acting surprised? Aggravated? Disappointed? If anyone out there acts the same way during any chronic ailment, tell me how you stop, if you stop. I do know one thing for sure. No Matter What, this brain will seize with or without my blessings. Relaxed or stressed. Makes no never mind. Shame on my brain... Hugs,

Entry Thirty-one: January 28, 1998

"An Affair to Punctuate..."

Before seizures, epilepsy being the cause, I had big things on my mind. There was a compartment in my brain set aside for punctuation. I was in love with the comma, mad about the misplaced modifier, and crazy for the hyphen! Semi-colons: drove me mad...."quote marks" were the rage in my head. But with it all, bring me to a sentence with a period missing, a run-on taking place because a coma couldn't be found, and I was delirious. Those things were of absolute importance to make my paragraph, my life, work in order. Thus, enter a chronic disease like mine (epilepsy) and out the window went all my punctuation problems. Oh, it wasn't the epilepsy to blame. It was me... Shirl! My brain was still working and my eyeballs scanned words, but my priorities had changed. I went from a "Where did that comma go?" person to a "Why can't we have medical research?" person. No longer was some silly hyphen or period going to cloud my day. I was going to type, send, and be off with it. The times I use to write, indent, structure, double-check, look-up the dash... well, it caused me to write a sentence here and there. I was spending too much time re-thinking! For some people, this is great. For me, a disaster. I am the "No Patience" person. The one who will type a disclaimer to my mail. "Uh, sorry if I spelled wrong." Wrote a note to fellow Journalist, Kay, and rec'd a dozen roses. She said, "Okay, so what?" And another dozen from Nancy, who said, "Okay, so what... I'll do it." And Nancy does. And today, another dozen from Patty. She takes me out to read while on an outing. . Bory gives me orchids every day. If I need to think of a word he will jump to his Spellcheck, Grammatique, the Dictionary... this is his makeup. Writing the way I do drives him up the wall. People, I have a garden of flowers from people who know about me and my punctuation. Am I lucky? Oh you betcha. Hugs Shirl, lifting eyes off keyboard to send.

Entry Thirty-two: March 22, 1998

"Reporting Myself"

A true journal is all encompassing. Sad, funny, truthful. A written recording of feelings, in my case, Living With Epilepsy. Throughout all my entries, I have been trying to say that "no matter what, life goes on." As Patty Furry said in one of her entries on cancer titled "The Good, The Bad, and The Ugly," there are all those emotions.... mine is attitude and behavior. Three months ago, Dr. DeGorgio was sooo excited. Besides the Dilantin and Pheno, he had another drug for me to add on. Smiling, he said, "It will go with your stimulator and maybe give you 100% no seizures!" Looking at him, I answered, "You told me 100% is not a goal! Better control was!" After having epilepsy for 57 of my 63 years, I had tried everything. I had every side-effect imaginable, and in pre-surgery, every test you can dream of over and over again. I had said with the last drug, "This is it! Save my stimulator battery for when I need it, but NO more add ons!" As I sat on that examining table, Dr. DeGorgio smiled and wrote out the new prescription! Coming with that was a schedule of how to build up this add-on in my system! Shirl Rapport always kept records, logs, followed advice, never questioned. I quietly said, "I can live with a few seizures, accept that the device in my chest is working 90%, and call it a good life! No more anything! I even saw the announcement of brain surgery on television, with all the brand new instruments as a result of the space program, and walked out of the room. This, gang, is ME. The complier, the wisher of "take it all away." And now it is good, only for me, that I accept no more new anything. No more swallowing charcoal to get food down, no more new drowsiness! But Dr. DeGorgio wrote the script and gave me a "You MUST" lecture. I realized that a doctor wants something... anything... to help his patient. I can't blame him for that. BUT, this week I see Dr. DeGorgio and he will know, even if I tried lying, that my blood will not have a trace of that new drug; not because the new drug is bad for people... just me, right now. If my stimulator didn't need checking and if my new six year battery weren't waiting to be implanted in a few months, well, I would be skipping this appointment. Well... no, I need blood levels to see about toxicity levels- urine tests. So, I am not totally disobeying. Dr. DeGorgio reads this journal. Gosh, I hope he doesn't get angry reading my confession! Angry, he will get over! Selfishly, he controls my battery. That is my worry. I accept "no miracle." He doesn't. I am going through an "I deserve" stage. Take my normal meds and get on. I deserve not to have side-effects, and from past experiences, I don't want them. Now, you know that you cannot do what I did. This is a Shirl Rapport thing... reporting to her journal. And know that until next week's appointment, as I cook, type, etc., know that under my breath I am cursing my blood and urine, cause it blabs the truth. Hugs,

Entry Thirty-three: March 28, 1998

"Medical Bills and Signatures"

As soon as the 911 people pull away and I am plopped in a bed, nurses, doctors, technicians, lab people, x ray equipment arrives! For me! All designed to keep me alive, and it builds a bill. Things we think come with that bed but don't and we are charged for:

24 hour nursing

3 meals per day

antiseptics

autoclaves

extra bed

bedside utensils

charting services

crutches

first aid supplies

forceps

hair trim

incontinence supplies

irrigation solutions

laundry

lubricants

nail files

resident lifts

restorative nursing

comfort equipment

supportive restraints (like that good old strait jacket I wrote about)

mattresses (the foam ones under the regular mattress)

rubbing compounds

scissors

thermometers

walkers, wheel chairs

And more:

between meal nourishment

bed rails

canes, cradles

footboards

gauze dressing

flashlight

hypodermic syringe

infrared lamp

ice bags

laxatives

oxygen

Residential Examining Equipment

Social Services

positioning devices

water pitchers

vital sign equipment

medical nurse/ day/ night

trapeze bars

sterilizers

tongue depressors

weighing scales

So when we wonder what in the world "extra equipment" is...and we PAY for...scroll back up! Makes you sick, huh? And after cracking my head on the sidewalk during a nasty fall with epilepsy as the reason... at the ER I was asked, "Mrs. Rapport, we HAVE to know this before we admit you..."

1. Do you have a will on file?

2. Can we call a religious leader?

3. Your blood type?

4. Any wishes for Social Services?

5. We must read admitting form to you. 6. You must sign the admitting form and

7. The release form

8. Understand all unnecessary expenses are:

9. Sign that

10. Do you say your husband is next of kin? That man? pointing at Bory

11. Release for OR

12. Release for XRAY

13. We NEED the date of your last tetanus shot

14. Our computers are down.. understand?

The above is just a smattering of questions Bory told me I was asked. I was in a coma so, I guess. The blood covering their floor, the yelling from a husband, and I was wheeled in with 3 Neurosurgeons saying, "We need her signature, medical record #, co-pay payment... and gee whiz, blood... she dirtied my white outfit!" All this was reported to me 5 days after the coma and stitches for a broken mouth/ jaw from falling face-down, hard! Finally I was labeled "uncooperative" and my unconscious body was sent upstairs. There is a humanity lesson here..huh? One big form...The Right to Die, and the Donor Card. High hopes were given for me! Hugs,

Entry Thirty-four: April 7, 1998

"Up in Smoke"

and part two on April 17:

"An Upset Dura Mater"

I personally believe that when I am thru here, rather than have some medical student lurching about looking for his body to study, that I, Shirl Rapport, will go to him/her. A note on my toe: "Do as you wish... put me on ice at night... and please shave if you have a beard. It would tickle!" That is the only instruction I need to give. But oy, as I spoke with the University's Anatomical Gift Department, things got complicated! This sweet voice said, "oh, we want all of you. Fill out the papers and we will mail you a nice laminated card!" Fair enough. But this sweet voice continued, "The eyes... did you call Doheny? (USC's eye clinic) "Well, No... 'all of me is all of me.' Even the eyeballs Dr. DeGorgio looked in every month are yours!" And I made a mistake, gang. I said, "Uh... when you are through with me, take my Pacemaker and study the effects it has on people!" Well, first eyeballs are up in the air. Now my Pacemaker. Her voice lowered, "Uh... it, you, all go when you go... and please settle the eyeball question!" Now my mistake: I said, "You want everything up in smoke? My vagus Nerve Stimulator? My eyeballs? Do my eyeballs saunter to the eye clinic one at a time, or do they roll in together? I have a dilemma. ALL up in smoke except my eyeballs? Well, thinkin'. Sure, I believe in Science! But to have my used up electrode and battery that I have become fond of, go up in smoke? And roll my eyeballs out like a pair of dice? Well looking to you to see what you say. Hugs,

P.S. Part two....

"An Upset Dura Mater"

I wrote you earlier about my belief in giving, research, the works... Well, going thru the maze of tissues, bones, corneas, valves, veins, all covered by skin, I came across an upset, very upset "Dura Mater." To you and me, to med students, to loved ones, the Dura Mater is called vital, covering the brain and spinal chord! I thought that it most certainly was on my donor card that I had filled out for the University of Southern California's Anatomical Gift Program! It is on file at USC with x's made over the skeleton they sent me, getting me to shop all in one place. Sitting at my computer, a knock on my head said, "Shirl, yoo hoo... you forgot to x me. I am your Dura Mater calling out, Numbskull!" Since we are asked to pick and choose whatever parts we want to send over for use by a student. Gee...I had certainly forgotten to X where the word "Dura Mater" sat. I had long ago decided, after finding out that funeral directors charge for the rouge, to be cremated. But cremation too, takes questions. Scattered by sea almost takes the United States Navy! Thus, giving my body to a medical school, seemed fine, until I had to research the cornea question. Me and the Tissue Bank...Local, County, National...well... somehow, in all my discussions, I had forgotten the words Dura Mater. You Donors tho, "Don't forget to eyeball that list... erase as you go... until the paper is blank.. Let's not have Dura Mater mistakes hanging about!" Hugs,

Entry Thirty-five: "At 63, 13 Arrives... "

Ms. Margolis

Gang, I need to write about Estelle Margolis, my assigned Home Room Teacher in Chicago. For four years, (Freshie, Sophomore, Junior, Senior) every beginning 20 minutes of the day would be spent with the same person. Ms. Margolis was assigned me! It took no time at all for her to notice that notes for meetings, calls home, etc. were ignored, and that she was stuck with me! And happily, I for the first time, was accountable to one person on a consistent basis. The kids laughed at her. She wore the same blue cardigan sweater, over her shoulders, every day. Me? I was in for a dose of flexibility. I would mope over before the bell and say, "Ms. Maaaaarrrrrrgolis, life is dreadful." I had plastered a picture of Sinatra in my locker, and swooned. The kids had laughed. One day Ms. Margolis said, "Shoil, go to the stage show at the loop. Meet you there at 5!" and I smugly thought, "Ah hah! Out on the town with my teacher and her money!" ...but spent hours trying to figure out why I had to bring a flashlight. She met me at the Chicago Theatre and called out to the manager, "This kid will usher, make popcorn, hand out tickets, anything... just to sit on the floor and watch the show when the curtain goes up!" And, I did! Thanks to her usher thoughts for me, I saw every production that came to town, sitting on the floor. I found myself stuck with fractions. Margolis knew I loved to conjugate verbs... but gang, math was a problem! We struck a bargain. One extra year of English and the math would go off the books. I could spend my time working as a Braille volunteer. This woman is the first to ever give unconditional love, totally! Take my word. After High School, going to Junior College, bringing Bory to meet her... all was natural. And later, when we were in California and as I became older, the "Ms." always stayed. I couldn't bring myself to say "Estelle." As she was getting ready to come to California to our son's wedding, she yelled, "Shoil, Shoil, call me Estelle!" That name never came out. It was always lurking in my throat, but I was unable to feel comfortable releasing it. Finally she said, "Okay, Shoil, say "MARGOLIS." And whew, I did. "Ms. Margolis." Before she died, she saw me thru everything. She would tell me, regarding the epilepsy, "that closet is stuffy." In my mind she is up on a cloud yelling, "Shoil, 20 minutes a day, check in with me!" and I do. Always will. So a memory that began when I was 13 years old is still ongoing... at age 63, it just gets stronger. (see added entry below) Hugs,

More on Ms. Margolis (added later when I got to thinking more about this wonderful, positive person in my life. As you can see....enough memories for an encyclopedia....and tears) When Ms. Margolis entered my life, I had no idea, none whatsoever, that people who could be counted on existed. I poured my heart out to her. She dosed out "Tough Love" and she stopped me from this notion that a "child of divorce, orphan background, different name than my stepfather..." No big deal! My mother had one person she liked: Madame Markham. The few times my Mother would haul me over for a visit, we would go to Madame Markham... and what did she do? Madame Markham took a little ball, shook it, took the hand, and promptly predicted the future. My Mother camped out all the time at Madame Markham's. Gypsy type adornment, chewing garlic, this was my Mother's idol. When I entered school and began following someone who made sense, liked me a bit, and set rules... well, this was the absolute cat's meow. Someone loved me enough to set rules! Ms. Margolis was not going to let me whine my way thru school. I was going to conjugate verbs, write, make something of myself, called "Usher," and never, ever waste time swooning at my locker. The "Oh Fraaaaankie" had to go! She gave me a choice: "Shoil, learn, love, and be counted on, or be a Madame Markham."

Entry Thirty-six: May 3, 1998

"Does the Gripper Stir Soup!"

When I broke my hip, I was so taken with some of the medical equipment I had to use out of necessity, that I deemed them necessary! I said, "If it helps the hip, it is great!" After breaking my hip and having the thing replaced, I went from a wheel chair to a walker, to a cane... and my hip started bonding a bit. I also had a piece of magic handed to me by Bory, my hubby. The Gripper! That little baby is really something. Drop a pencil? Need to pick up anything, reach for anything, use the Gripper. It is a giant clothespin-looking thing that grips! This item I can't part with. It is my slave, and I fell in love with all the things my Gripper can do. When a disabled person needs equipment, start with the Gripper, which looks like a giant X with a magnetic bottom to grip small things like pins. I received a note from a fellow journalist, Kay, who innocently e-mailed me asking, "Does it stir chicken soup?" Staring at that note, staring at my GRIPPER, looking at the soup pot, and thinking about the goodies it might stir, yet never put to the test, I mulled! It reached in cabinets, reached into the back areas of the refrigerator, scratched the back... well, gosh darn. Why not stir soup? Well, Kay had smugly added matzo balls to the chicken soup request so I fondly hobbled to the soup pot with great expectations and to test. Ah hah! Soon there will be a Gripper line at the store. One final brag for this handy device. "Stir soup!" Happy to report the latest medical finding: I don't really know if the gripper can stir chicken soup, noodles, matzos balls. Yah, we with epilepsy know MRI, CAT, PET, SPEC, EEG, PHASING, MAPPING. Been there, done that! But the soup pot was empty! No stirring in an empty pot. So the gripper has some mysteries, like the Auras we try to describe. The next time you are trying to write in a log or describe a seizure to your doctor, just think about the gripper... think... my gripper is still an unknown. So the seizure is, also. Thank you, Kay. And the plastic parts and the magnetic parts of the Gripper are breathing a sigh of relief! Hugs from Shirl, who now is saying, "Yes, we have no cook!"

Entry Thirty-seven: May 12, 1998

"Surprise!"

As we get older, the term "Game Plan" comes into our vocabulary. The football team. "What is their game plan?" In planning my day, this is sort of a game plan with my calendar, grocery list... that sort. Health has its own game plan. We get inoculated against measles, mumps, all sorts of "what if" things. But the brain doesn't play! Knowing my epilepsy may be controlled with medication, the right combination... well, my brain and a few others won't play. I admire the football huddle. Arm in arm, play by play, top teams send out signals. They try to follow a game plan. Occasionally, the football is dropped. FUMBLE... an unexpected glitch in the game plan, sending points up on the scoreboard. And that is how I liken my brain and its seizure activity! A unexpected glitch in my brain, disrupting a neuron just enough to seize. The left temporal lobe yells out, and SURPRISE! Here Shirl Rapport sits, computes, happily clicking away, and when my eyes look up... DOWN there from the floor is Bory's leg, and hand... trying to untangle me from everything! "HUH?" My brain never warned me. I didn't feel a thing, except now, Bory's leg... thinking sets in slowly. OY! My game plan was and is to take my pills. And of course my implant is automatic. But no one promised me a 100% rose garden. A few seizures here and a few there beats the 60 or so I was having. As I logged this seizure, the one thing that surprised me was that I was on the floor. Now, a few days later, I am thinking how I have reported a broken nose, arm, shoulder, mouth. So why me? Why surprised at finding myself on the floor? It is even hard to type "GRAND MAL," but it happened. A person with epilepsy can go years and then kaboom. I am just saying that with any ailment, and with blood out of whack, and age... "surprise" is a passing thought. Now... that runner... HE FUMBLED the ball again! Oy!

Entry Thirty-eight: May 24, 1998

"Study is Over"

Whenever I was in trials with a new drug, I would read the FDA approval in the newspapers. I never was able to see a drug all the way through trying to make it in the market, to the full end. The pharmaceutical houses hadn't given up on me but I had recorded side effects that usually hastened an end to a drug study for me. For example, twelve years ago Burroughs Wellcome started me on a drug they called Lamotrigene. About a year into the study, I had recorded enough violent falls and broken enough body parts to have my neurologist, Dr. DeGiorgio say, "Since we don't know... STOP." Years later I read that the drug, coming out under the code name Lamactil, had been FDA approved. That has been the case with ALL my drug studies; never seeing the end! When I did the trials on the PET scan, the CAT, and the MRI (Nuclear imaging at that time), they were machines, so in / out... study over for me. The last machine, The Spec, since that was only three years ago, I don't know. Drugs are for control. Machines for diagnostic work! So I was accustomed to giving blood and urine, once every two weeks. In fact, walking into the office, I would just say, "Sandra (she is part of the study team) "Bottle. Need bottle!" With that basic always handled first, I could try to walk, not zag, touch my nose, and all the other things that had to be recorded. Gang, I reported the abrupt end of my Phase One Telemetry study at U.C.L.A and the Veteran's Administration, because of parking! Housed on the campus, at a place called The Reed Building, our doctors discovered their parking had been taken by The Olympic Committee!" As you can see, studies end for a variety of reasons, even the silliness of parking! I had not anticipated ahead, and here I am with the Vagus Nerve Stimulator, the battery and the electrode, housed in my chest and neck, being approved by the FDA, BlueCross, and Medicare. The study changed! The good part is that as people are trained in the mechanics of my gadget and more of the population can try this! A "Brain Pacemaker!" It is written about now, talked about, and done throughout the country. Europe has been going gun ho for a long time. Silly me, tho, I am use to a schedule. The Doc said to me, "See you in three months unless there is a problem." This product is "in the medical market place." Here sits this Lab Rat, meandering! I had to talk USC into doing a blood test because as I have written before, Dilantin has set off toxicity. My machine has given off such confident vibes that I am now called "Fast Track." Instead of stimulating every 5 minutes as before, well here I am... every 1.8 minutes kicking on automatically. And sure, when I need it, Cyberonics will provide my new 6 year battery. But the study is over. The Rules: Keep logging information. But the psychology tests, heart tests, lung capacitator tests and vocal chord test: OVER. Summed up in "Normally we would see you now, Shirl, in 6 months. With the 1.8 Fast Track, three months! A study schedule is a study schedule. Now I am just a normal, run of the mill, validate parking patient! I have seen this through from beginning to end! WOW! Patience must set in. Until now, it has been USC for everything. Now it is, "We will do this and that. Go to Kaiser for scrip and blood pressure reading." So, this is how it is? The blood tests I use to take were always STAT. Now it is "Hope to see it back in a week or so." "But Doc, I am toxic!" "Hmmm," says the Doc. "Be careful. Don't drown in a bathtub!" Earlier I had said, "NO MORE NEW anything. My Lab Rat days are over." What a meander to meander on! With all the studies I've been through and actually seeing this one through, well, I must tell you... I am thrilled for the future patients. Me? After all these years, 3 months is a looooong time. Hmmmmm... Research at Neurosurgery/Neurology divorced me! Off to get my Kaiser card, shine it up, and remind myself: We have coverage! Hugs,

Entry Thirty-nine: June 6, 1998

"Looking at My Log"

The past few days, with my stimulator on "FastTrack," all souped up, a confident Shirl logged 10 seizures in two days! What today will bring, I have no idea. Discouragement, big time! With every entry to this journal, I have tried to be upbeat because my life is upbeat most of the time. But 10? I simply look at my log that Bory now keeps, see the tic marks, swallow hard, and say, "OH NO." Oh gang, you have seen me before asking, "Why?" And truly saying that I can't believe or I can't accept... Well, 10 tic marks logging seizures in two days! That was eons ago - before the pacemaker, before increase in meds..the works. My brain, my lobe, is soo stubborn. Does it not know that my feelings are crushed? Four years ago there were large numbers recorded, but with the implant, that came to a stop, and a pleasant 3 or 4 a month were recorded. And for me, this was terrific. A sign of "good times for the lobes." I am weepy, speechless, and confused. I hope today, the third day of this little cluster, (mine usually run in clusters of 3 and 4 days) maybe this cluster is over, kaput? Wishful thinking has got to stop. I have Epilepsy. Uncontrolled. For BETTER control, I use medications, and the Brain Pacemaker. When on earth am I going to face this? I am never, at age 63, going to see the word CURE. Just do the best I can and stop this weeping for the impossible. At the Disabilty Convention that I attended last week, I saw people in all kinds of wheel chairs etc., some with their prothesis slung over their shoulders to be strapped on later. None of the people I saw were wishing for the leg, the arm, maybe both, to come back to life. And they were carrying on, playing basketball, tennis, golf. I saw the blind, the deaf, the palsied, carrying on! Did I not learn from my fellow man/women a lesson? I met the agent of the television show "Life Goes On," featuring a Downs Syndrome child, "Corky." Did I not learn anything from a show that said to me, "Shirl, Life Goes On... with people, with equipment, with ATTITUDE?" Hugs, Shirl who does know. Looking in my log is not a good thing for me! Hugs