"In A Closet Of My Not Being Accepted By People As An Epileptic..."

I imagine when my father proposed marriage to my mother... it started off, "You are WHAT"? That was 1934. Many things were not accepted back then. The marriage was one of convenience, and I, Shirl (back then) Blum, was the family embarrassment. Born too early. My father and mother divorced early, leaving others to raise me. I learned early in life that for some reason I was not invited to family gatherings.. and with a mother who simply couldn't handle anything going wrong, mine ignored the early seizures termed Petit-Mal. My seizures were called "spells." I was apologized for... and I learned early on that this was the thing to do; have a few moments of "not being with it" followed by a string of "I am sorry"'s. Looking back now, with a medical helmet, and football flak vest worn to keep from the breaking of bones, I truly came out of a closet I had put myself in, to go public and stop lying about my medical condition. I had been apologizing for myself for so long..being a 6 month baby..at 8 pounds..with a medical condition that most people thought the devil had taken part in, that crawling out was almost impossible. And for sure, absolutely, I was the only one who drooled, fell, wet my pants during seizure... until the Prodigy Medical Bulletin Board introduced me to thousands!

Hugs,

© 1998 Shirl Rapport. All rights reserved.

Entry Two: July 18, 1997 "No More Hush on Epilepsy...or Neuron Nonsense" Looking back, I was the one who built my closet. Dr. DeGorgio, from USC now, and completing studies, became my Doctor. There was this pill 10 years ago, called Lamotrigene... Dr. DeGorgio said, "Nothing has been working...." That I knew...so he looked at me, explained research, and in I went...almost. He was desperate for a head like mine...and me? I was out to save humanity. I was noble. I was a class A Martyr. Dr. DeGorgio said the best thing to me: "Shirl, as desperate as I am...as desperate as Burroughs-Wellcome is to begin a study, I simply can't have anyone, ANYONE who doesn't at least put herself on the list." "You," he told me, "you are humanity...you have to want to get well no matter what. And self pity is for the birds." I went home to mull, and for the first time, I realized that I was in the business of "pity me." "I can't do this." "I can't do that." Everything ended with "I can't." I was leading an "I can't life." How my husband tolerated this, I will never know. I realized that whatever I was told as a youngster, was a tape that simply had to be erased if I was going to be a human being again. So. Meet Shirl Rapport..age 62..Computer Bug. After all these years, it has been one study after another..always looking for better control. Today, I start off joyful for humanity...again...but this time it is because I was under study with the Vagus Nerve Stimulator which has been approved by the FDA as of today! ...and one of them sits on my chest. It helps 70%. Percent isn't easy to picture, so I will just say that it helps from 60 seizures a week to 9. Thank goodness today I am joyful. Yesterday...a seizure..so, I sulked a bit. I react to a seizure as if it was my first one. Hugs,

© 1998 Shirl Rapport. All rights reserved.

Entry Three: July 20, 1997 "... and the wisdom to know the difference" A social worker sent me to Alanon...no alcholic in the family, but martyrs can use 12 step too. My first visit was like, "Huh, all these people are laughing? I must have walked into the wrong meeting room!" A sponsor sat me down and said, "We will learn Serenity...and it starts off, "God, grant me the serenity to accept the things I can not change, the courage to change the things I can... and the wisdom to know the difference. Amen." On many, many frustrating days and nights, I have to remember what I can't control. It took me years to realize that the word "THINGS" is in that marvelous poem, not people, not neurons. One of the early tests for seizures is an EEG. I had the inventor of the machine hook me up, trying to prove to me that the waves- VVVVVVVVVVVVVV weren't like that. Mine were crooked. Poor Dr. Gibbs. In a small office in Chicago, he hauled out this giant machine and began pasting wires all over my head. Then as it went "beep beep beep" and he marked up the graph paper with a crayon-like pen, he said, "Shhhhhhhh while I locate the brain!" Today's machines are ever so much more modern; Now I lay in between foam rubber keeping my head still, get launched into a tube, and while away the time knowing that I have a brain, somewhere? Now with the Brain Stimulator/Pacemaker implant, I know something is happening. This Pacemaker device is so strong, that it closes off the vocal chords for 40 seconds, every 4 minutes. My setting is changed with a computer and a mouse held over my chest. I often wonder what Heart Pacemaker people feel when stimulating. During the Serenity Prayer that I use often, I remind myself that I am changing what I can, and trying to get the courage to realize that some things won't change... even with the pacemaker... it is pills, a few seizures...and ... I visit the Medical Support bulletin board on PRODIGY to listen to others, remind myself there are others... and life out there for me. Hugs to the Medical BB people who truly have let me know that I am not alone. We cry and laugh together. Hugs,

© 1998 Shirl Rapport. All rights reserved.

July 24, 1997

"The Committee Meeting"

When a person appoints himself/herself as the Chairman of a committee, he/she can expect to do all the work, and worrying, .which part is doing its share, the follow up, and communication with sub-committees. Alas, as in the past, my committee is acting up. I checked over various little committee "under me type" parts. Most were trying to function. Some weren't, and it sure has gotten me down. Oh, I will pick myself up, gather my wits, so to speak, and get on with them. I need them, but oh, what a sorry lot they are.

First there is the heart. "My voice tenderly thanked it for not giving up, beating along with the drums." But inside my gut, which has no representation, I cursed it to the ground. It can't be trusted. But that I will go in to later. I'll use a scale of one to ten... least active, most troublesome, 10 gets the star for bad conduct. One is just an honorable mention. Anywhere in between, is the rest of the sorry lot.

Least, is the kidney. Well, I have given them each a committee chair head badge, rather than put them together. Anyway, after speaking to my kidney, and to my other kidney, they both had a good cry over the deplorable situation I was in. Ok, they wanted to let me know that spilling over in tears the way they did, was most unfortunate. Bad timing in the middle of a seizure. But they both blamed a brain wave. I looked at my face, my head, my temporal lobes, and told the kidneys they both had been neglectful, and that I couldn't soak up, could not absorb, one more foolish story from them. But, necessary parts they are, waiting for a "donor jar" to carry them off some day, I tend to look the other way, when I am accusing.

The liver. On a scale of one to ten, it's there!! and rather than upset it, I don't remind it that it should remain good and not read labels on my drugs. Put away the PDR and know that a sacrificial decision has not yet been thought of.

The Gall Bladder. I don't know what it does, but it is not bothering me, I don't bother it. But friends of mine who have had that problem let me know that mine too might be an untrusting member of my body.

Working bottom to top. My toes and the nails just won't grow up. And without polish, look....yuk. Both feet, housing my toes, ankles, and instep... well that committee is not in step with the times. They are suppose to hold me up, keep me standing, co-operate with my legs. Ah hah! They are a crummy lot. I can not fall back on them.

My stomach absorbs food, my nose smells it while I am cooking, my tongue helps it all go down, my taste buds perk up, and guess who is doing the dishes, and getting rid of food left over in a system that sometimes works?

My eyebrows frown and eyelashes flutter; they too are not on the donor card. They just get tweezed away.

Me. As Chairwoman of this committee it seems I have to do all the work. My rear end just sits and enjoys it all. I asked it once why it couldn't be co-operative and it replied "I enjoy working down rather than up!!" Go figure it. No one wants a donated ass during a crisis, no trip in the helicopter with a courier service saying to a person in distress "here's an Ass for you." Well, since it found out it is not on the donor card, it just sits, and sits, not doing anything. I could get a life raft, walk around hanging on to it, but that brings me to the most troublesome part. No, not the most troublesome part, the disgraceful, troublesome, aggravating part-

The brain and a brain wave. It drowns easily. And this is a committee member with sub-committees from side to side, top to bottom...a very controlling "Head" that acts like a King. All members are going to a barbecue party and "The Head" with all the lobes might get left behind. The head has heard of Research!

Hugs,

July 27, 1997

"H.M.O., Hugs and Honesty... Started Me On My Journey."

Twenty five years ago, Kaiser Permanente became our health carrier and suddenly, from an 80-20 traditional plan with limits, we had a plan...an HMO, Kaiser, that put us first. My Neurologist began there with a Dr. C. Kim, Chief Neurologist (still there), added a Dr. Chaya, Neurosurgeon. And if they weren't near, when I was at the Emergency Room it was a Dr. Joyce Blaylock, all at the Kaiser on Lakeview, in Southern California. Dr. Kim was the first to inherit me from the Chicago area. That man tried...everything. Then he brought on board Dr. Chaya, Darn, he tried everything - even did an experimental project with a drug now approved- Felbamate, by the Carter-Wallace people. Nothing worked. Dr. Kim called Bory and me in one day and said with tears, "I don't know what else to do." He knew I was having about 70 seizures every 3 days. Dr. Kim looked at us and said, "We want to send you to UCLA for a surgical workup. We will pay."

I arrived at Reed Neurologcal Bldg on the campus of UCLA at the same time the 84 Olympics were coming to town. The Veterans Administration was down the block housing Dr. Engel, now at the Cleveland Clinic. With Dr. Escueda at UCLA, and Dr. Walters, they hooked 5 of us up to have our brains mapped in a system called "Phase One Telemetry." Three weeks of listening to the Olympic Village from our Hospital room, we were hooked to a camera and a computer 24 hrs a day. All equipment was waiting for us to seize, to see where the seizures were coming from and to see then, if surgically it was okay to go in. My mapping said "No, the damage is too deep."

Down the hall a young man, then Dr. Christopher DeGorgio, was studying sleep disorders. He would put his head in the door, say "Hi," and give us scores. After 3 weeks I went home, bidding the UCLA doctors goodbye, and saying "good luck" to a young doctor heading to USC, Dr. DeGorgio. ...and home to a box of kleenex. I wanted surgery. I wanted my temporal lobe out. I was unreasonable, almost spitting on Dr. Escueda, who did the best he could.

I went back to Kaiser to get a hug from Dr. Kim, who would have sent me ANYWHERE for help. When Doctor Kim originally told us that there was "nothing he could do, everything at that time had been tried," he had been doing his research and had approached the Kaiser Staff on "what to do." Dr. Kim listed a bunch of places that were doing a great deal of research in Neurology, and the Doctor's behind them, in Europe. He stared at me and said, "We have Dr. Walters, Dr. Tom Heric working over there in Germany on Epilepsy approaches... and we have Doctor Engler and Doctor Southerling at the Cleveland Clinic doing all sorts of neurological work. Dr. C. Kim asked, "Where do you want to go? And if you think local, I will be here ... Dr. Chaya, Dr. Blalock.. we'll all will be here if you need an emergency room when you get back."

My medications affect all parts of my body, so it is always the neurologist called to prescribe. In his assuring me that local would be local (Orange County), when I got back, that is when I remembered Dr. DeGorgio. I remembered..oy...Sleep Disorders!! With a man like Dr. DeGorgio here, why Germany, why Cleveland? (I understand the Europeans are doing great jobs in these areas. In fact, the Lamotrigene I studied here with Dr. DeGorgio, had been in use in Europe. And one of the reasons Cyberonics has an office in Switzerland, besides Webster, Texas, is because this Vagus Nerve Stimulator became widely known and used in Germany.) Having remembered Dr. DeGorgio at USC from UCLA Sleep Disorders, was a blessing. I called USC. He, by luck, needed my head.

With broken body parts due to falls during seizures, I have indeed met the "Kaiser Docs" at the ER locally many, many times. They tell USC what they are doing, and USC tells them what's new with me. The best of all worlds if one is to fight a chronic condition. When I brag about the Veteran Administration's Dr. Hannford and their 3rd floor Neurology, UCLA, and USC, I have to put Kaiser up on top of "How this all began." Thank goodness they had the courage to say, "Shirl, we can't help, but let's look..."

What a round robin for the HMO of today... all the HMO's during World War II, when Kaiser was born at a shipyard so that Rosy The Riviters could work long hours, get sick, get fixed in the parking lot, and go back to building ships. Back then, we had a war to fight. We had ration stamps. We had meat once a week. And we saw the Doc in between riviting at the Kaiser Shipyards. Because there are so many HMO's, each one has the latest in equipment. Look out the window if your car and see that MRI rattling in one of their parking lots. Sometimes, it is good to remember how fast we are growing.

Hugs, Shirl P.S. I did this entry on the beauty of the HMO, the Veterans Administration, UCLA, and USC, then later thought of more to share...

Back then when I went to USC, there was no University Hospital. There was the Norton Cancer Institute. The buildings I now go to were dreams, faraway looks in my Docs' eyes. The building I used to go to back then, on Soto, has now gone into Kidney Research..Genetic Research..one building has remained constant- County Hospital. If the VA or USC wasn't doing something to me, it was County. In fact, USC is referred to a USC/County...they too, never get too big for their britches. Some of the finest tests, including this Implant surgery, was done at County with Dr. Day and Dr. DeGorgio. My Pet studies were done on the campus, but a recent one, The Spec, was being researched at County! As I was going thru the Spec Machine study, it wasn't hard to lay still. I thought.."How many people know that beyond stab wounds on the first floor..there is Neurological..upper floor?" Same for the VA...dark green rooms on the first floor...cheery rooms above, by neurological research.

I have to believe the ailment being studied is not just confined to Neurology. But it is the County Hospital, The Veterans Administration, that has people who need help. And I do believe that once the Government steps in, equipment is there..THERE....so, the Spec. I was wrapped up like a Mummy, laid on a table, put in front of a computer, a little IV drip...and there...a camera was recording my brain!!!!! The Doc said, "Shirl," and before I could respond, they knew from the computer and the camera where I heard their voices from. Which in surgery, is a good thing to know, huh? Everywhere I went, the word was and is still: "We won't go in and do damage. We must first know how to go In and Out..like a revolving door"... and that machine is at a place where most of us would say, "hmmmmm, County?" I'd say, "sure...and the food is good too!" By the way, they never said the word, "Cancel" to me. And, I cost them a bunch.

Hugs,

© 1998 Shirl Rapport. All rights reserved.

Entry Six: July 29, 1997 "My Mantra."

I don't believe a year goes by, and there have been forty five years knowing and loving Bory, that I haven't asked, "Was I clear on what I knew about my seizures? And gosh, I am sorry if I misled you. And gosh, I love you more and more each day!" It's a question that I imagine he is sick of me asking. He patiently explains to me what I said, what I knew, way back then... and adds, "What difference does it make?" So I have to believe that having a wife seize, traipse with the green hockey helmet and the football flak vest is adventure? I noticed in reading Melissa's Journal, telling her soon to be spouse about the effects of Muscular Dystrophy, that the walking, waddling, and all that I too worried about, was on her mind. How many others with conditions like ours wonder "Did I cheat my guy? Did I know everything? Did I not want to know everything?" Well, wondering and worrying is part of the disability. I always wanted to be 100% normal... work a full time job, not need the helmet and the vest, not fall down cracking my head on some occasions, not worry about unusual medicines during pregnancy. I wanted Normal sooo bad. Bory doesn't ask, but I do..over and over. When we lived in Chicago Bory was at the University of Illinois. Me? A perfectly perfect person, loving this Joe College. We were 20 years old. His Dad said, "Honey, you stare off..." His sister Lynnie said, "Sometimes you are not paying attention." And I was swallowing Dilantin capsules back then, calling them "Vitamin-like." My Aunt took me to see Dr. Gibbs. Then while Bory was in the Army I became a dependent at Fort Bragg, North Carolina. Bory, a Private with the 82nd Airborne! Korea was raging, the draft was in effect. As a dependent, I asked the Army doctors to end this nuttiness of "staring-off talk." My denial was deep. I swallowed Dilantin without asking, "Why?". I watched and took EEG's knowing they were not normal tests for a gal my age. It took the seizure to climb up over the years, to indeed recognize that I did have a problem. Bory NEVER asked me "WHY?", "HOW COME?" etc. He knew denial better than anyone. When the helmet goes on my head, it is Bory who walks with me wearing it. It is Bory who walked in to Ram training camp to watch me get fitted for that flak vest. I was thinking, "Why?" He was thinking, "How do we protect?" Even today as I sit here, I remember asking Bory last night on the way to a Park Concert, "Did You Know? Did I lie?" Guilt comes and goes. Hugs,

P.S. Oh, in walking down the aisle, that long white carpet leading to the Rabbi and Bory... yes, I tripped!!!! Flat on my face. I lay there thinking, "If I don't get up, all that chasing for that man...ruined!"

© 1998 Shirl Rapport. All rights reserved.

Entry Seven: August 5, 1997 "Schwinn Bike and a Prime Rib" Ralphs grocery store and I have a special relationship. I rode my bike, during a seizure, into their plate glass window a few years back. When we think picking up a broken plate is tough, imagine a big big one! Another time, during a bunch of small seizures, while shopping, I apparently plopped a prime rib roast from the front of the cart to my big purse. After checking out, we were approached by the police. Thank goodness they saw seizure as my reason, which it was. At the meat department, I had been totally out of it, standing! When I think of all the times before my protective gear and ID that I could have been arrested for "drunkenness," "stealing a prime rib," "not stopping my Schwinn bike!" So with the drivers license gone, a promise to never ride my bike anywhere, and then the prime rib sitting in my hand bag... well, a clue. We have to carry identification! How are the police to know, when something weird happens? It is up to the disabled to put away shame and come forward. The hard way almost gave me a hard time! Hugs,

Entry Eight: August 6, 1997 "It Aint Always Peaches and Cream... for Anyone" There are times when despair sets in; not in me... Bory. I take it as a sign of not being affectionate, touchy.....who knows? Every relationship has its ups and downs, including mine. One of us will dismiss the other, in my view. It's a terrible burden to have the person you love, ALWAYS happy, ALWAYS content. To have a down time is normal for a bit. I wonder how many disabled people take offense quickly? And, can their spouses have a down time without explaining? I have decided to finally realize that my feelings get hurt... terribly, over things most people would laugh at, which probably... no, not probably, DID bring on the "ME" outburst. My hubby has decided I can't cook. I dry things out, or I undercook. And if a measurement is involved, he will climb all over the (bulletin) board looking for what makes up a tablespoon, which implies that asking me is ridiculous! In the scheme of things, I put it aside... until I begin to think. Hmmmm. Anyway, it is good to see this in writing. It has been a few days of a few seizures, and by now you all know, I act like this is brand new and sorrow sets in. These are my feelings! If I let them get hurt, who should I blame? Well, me of course. So many things, people, happenings in this world. Getting busy by writing something, has GOT to get me going. To my readers and fellow contributors: what do you do to just wheel, limp, or get away... or to conquer? Draw? Write..Cry? I hope for some hints. Hugs,

Entry Nine: August 7, 1997 "Sports Medicine or... Hut! Hut! Hut!" Dr. DeGorgio said, "Shirl, we can't have you breaking ribs or head parts any more. Dress to protect." Ha! easy for him! These items are a challenge to find. A friend of ours on the Police Force had me try on his bullet-proof vest. "Well, yes, that would do the job. But walk? Operate? Zilch! How the police can move in those HEAVY things I will never know. When I tried one on, down came my body. We went to a sports store, and quickly a bright green hockey helmet was pulled out. They look heavy, but with the foam tucked inside, the helmet was so secure. The rib cage was a different problem. Having broken my ribs a few times, finding breathing difficult, and too old for THAT kind of pain, the doctors couldn't cast me. I was a mess. Bory and I were watching the Rams play football one Sunday and he said, "If all those people can pile on Vince Ferragamo or Broadway Joe, and they get up... ask the Rams." Pain brings on all kinds of "why not" thinking. I dialed the Rams Training Camp here in Anaheim, at that time, and reached a Mr. Don Hewitt, the Equipment Manager. I started off with, "Mr. Hewitt, I fall, I hurt, any thoughts?' Without any explanation, he said, "Come!" I said..well "It's in the middle of the season. When?" Mr. Hewitt said, "NOW!" So, off to the Ram Training Camp we went. Mr. Hewitt brought us to the Training Room/Equipment Room and said to look around. I did. I saw 300 pound football players walking about and I was thinking about my autograph book! Bory and I searched, but in minutes Mr. Hewitt joined in, pulled this flak jacket up and said, "Joe left this. Try it on." I almost died... Joe's vest? I put it on and it was assessed by Mr. Hewitt: "This is good. Get the seamstress." She sewed, and cut, and soon the vest fit me like a glove. The special plastic material was perfect for the rib cage and I could move about. No buttons. Velcro. Football quarterbacks need freedom of movement and a quick in and out after the play. Mine was going on for the whole day and evening, but it was comfortable. Mr. Hewitt asked if we needed knee pads, shoulder braces, etc. Nope, the vest would be fine, along with the helmet. My glasses had been tinted earlier to cut out glare. What an outfit to wear walking around. But taking in a painful breath from the rib cage... anything was agreeable, even wearing a football outfit was dandy with me! When the Rams left for St. Louis, Mr. Hewitt had me come in for a cleanup, and a second vest in case I lost the first one. Right... lose a Joe Namath vest? I discovered that many teams will help people who ask. The Oakland Raiders do. We people with movement and falling problems... well, they are there to assist. The Rams never received credit - just awfully nice people. I know that at Rams Park in St. Louis, Missouri, they are treated well. This is one California Gal who says, "Okay soccer. Okay basketball. Give me the RAMS! Hugs,

Entry Ten: August 13, 1997 "Crisis Arrived with 911!" While not believing the people I loved, (Dad, Mom, Bory, Lynnie), I was kidding myself that this was really no big deal. Petit Mals can be deceitful. It's a quick stare-off, so I am told. When it happens a bunch of times in a row, the entire brain gets worked up. But people having Petit-Mals are blissfully unaware. We don't wake up on the floor or bump into things. It's a quiet disruption in the brain. Today, some children starting a drug program soon find control... some. My neuron was destined to cause trouble. Twenty five years ago I fell down a flight of stairs. I had begun, at that top step at Fullerton College, my crisis. Bory was teaching Financial Planning, and I was taking a History class for interest sake. At the bottom of the steps, I was met by 911, the police, and the Fullerton College staff. A little bump on the head, a broken nose; that was the damage report. But later that year Bory was attending an insurance function. He was an Executive, I was the wife playing host. Sitting at a table of 10 with 10 other tables for Home Office Personnel, I looked up and found all eyes staring at me. I had wet my pants... and all eyes were waiting for me to explain myself! All the lies I had been telling- "brief tiredness, hazy spells, etc." had to end. It was going to be easier. "I have Epilepsy and nice to meet you" became so much easier to say, and to warn other people for my sake. My trip out of the closet was beginning. And whew! The air felt good. Falling down the college steps did not enhance the seizures. The falling was part of a seizure! And thus the first of many little crisis to come. Married to me, Bory had become used to me being different in all ways. I picketed for causes...he became a Big Brother in that organization. I worked for the Jewish National Fund as an employee, typing tree certificates. He was a volunteer for The City of Hope. Our avenues have always been different. Now he is a Topic Moderator for the Celiac group on Prodigy. Me? I run to Neurological on Prodigy. I love cherry pie....he loves gluten-free, lactose-free mocha ice cream. I love my pie because I pig out. He loves his snacks for health. I seize for a study. Bory logs it for the same study. Hugs,

Editor's note: Later, after Shirl sent this entry to me, she sent a short note, at the end of which she had added: "When I broke my nose, I discovered I could not sneeze, blow... the works. I always broke something that couldn't be casted...And I have a nose big enough for signatures!!" This was too priceless - had to include it. Post script from Shirl... 911 has been at our home so often, we exchange holiday gifts. Bory has been involved in a terrible thing called Status...which for seizure people, means one seizure after another, and another... no time to breath. This poor guy has to determine if I am going to need 911 or if I will just come out of a seizure after a few minutes. Last time 911 was here was when I broke my hip walking into a chair. My hip, which is new now, is having trouble bonding with me! I jerk too much to keep it from swelling. Ah, but it hasn't fallen off the new swing that was put in this joint. For this, the Orthopedist said,"Be grateful." I want to apologize to all for an error I made. Especially, a double "I am sorry" to anyone in the 82nd Airborne. I made you the 182nd.... (since edited) so all of you, get out your wet noodles. Ah, in my haste to get a thought out, the thought does come out... in error. The 82nd Airborne... the majority, stationed in my day at Fort Bragg, North Carolina, don those billowy white parachutes in to enemy territory and deserve to be named properly. All of you..if you see an error, JUMP on me.. Hugs, Shirl... who remembers that Fort Bragg fed me at times, recognizing Bory had married someone who burns food.....and as I stated before, as a dependent, I was given all sorts of medical tests, proving to me, yep! my seizure pattern was awry. At that time I was driving our Studebaker in our Landlord's driveway, over her roses!!! trying to learn parallel parking. Seizures were so few in the beginning that I didn't realize I was a problem. I was a bad driver. If there was a dog two blocks away on a country road, I would sit and wait for it to decide what to do. I can't blame seizure for everything. An army caravan of troops waited behind me on a small country road in Fayettville, the town near the base. And I waited for the dog. A Sergeant from the caravan reported me to Bory and I was sent to driving school. Of course, once I realized a couldn't drive, I wouldn't drive with a seizure condition. I tore up my license. Pronto. All of you can safely cross the street now... I walk. :)

Entry Eleven: August 16, 1997 "Let there be music... in my village." Perhaps when the building blocks were in place, God said, "Someone has to have a chronic condition. All is not perfect but I will meddle!" There have been so many times that I really believed that while having seizures and doing everything I could to combat those seizures, God had done this to me. In my little world, I pictured God, Moses, whoever... sitting up on a cloud, saying "Ah hah! Let's do Shirl in!" Because I actually had to have someone to blame..God was it. Little did I know that I would come to realize that this is not a perfect world, and that He/She did not choose me for disaster. I could stop the shouting! And I did. Every time something went wrong I would saunter out to my patio, assume the position of HOW COULD YOU and wait for an answer that I had to find. No One... Nothing... did this to me. It is in the scheme of things. Until a few years ago, realizing cursing was getting me nowhere, I decided to count my blessings. That called for a memory trip. You should have seen me when it began dawning on me that "Wow, I had a lot of blessings." They were hidden from me because my cursing got in the way. Out came pencil and paper. First on the list, Bory. Santa Claus and Mrs. Claus next... Over at South Coast Plaza, an exclusive mall in Southern California, children climb on Santa's lap, pour out their desires, then run to Mrs. Claus for a peppermint stick. Every early December, Dixie and Preston Hibbard don makeup, costumes, and become the Claus family. Bory and I meet them for lunch, and as we walk through the mall people are staring... NOT at me, my helmet and vest! It is the magical couple walking beside us! And they love it, they are the show. When you wear protective gear like I do, all logic says, "This is a must" because for once, the eyes are on someone else, not me, a Jewish girl in vest and helmet, hanging onto Bory. What fun...people of all ages come up to them to hug. And it teaches me not to be silly with my stuff. It also teaches me to look forward to Christmas. The Ram training camp. All of the Rams, especially the equipment manager, who introduced me to Sports Medicine... Don Hewitt. It was ME at training camp, staring at 300 pound players, as Mr. Hewitt rummaged for Mr. Namath's old vest for me to put on, to protect the rib cage. When I had asked him for a thought, he had said "COME NOW!" And under his wing I have been ever since. When they left Anaheim, it was Mr. Hewitt who called Bory and me down to get my Ram checkup and get an extra vest. St. Louis is lucky to have a team with such spirit. That day at training camp, they had won, in my mind, 200 Super Bowls! At our Anaheim Park & Rec. There is Theatre Director, Judi Beghtol and her daughter, Megan; Producer, Sue Richmond; and Park Ranger David Hoffman. As I mentioned before, without my knowing it, they recently asked the performers during a park concert if they needed the strobe lighting, which bothers me and can cause a seizure. Thus, anyone performing during the summer, does not use lighting that disturbs my eyes. Because of these three who were forerunners of handicapped facilities, I could enjoy the concerts, sit where I could see and not be bumped, and appreciate the bathroom rails. My online Prodigy! This is a city of people and as a non-driver, my keyboard is my Cadillac. With Maribeth Doerr running our bulletin boards so that we can see that we are indeed, not alone; Live chats, instant communication, file libraries because of Debbie Taaffe; Web Communities... Nancy Eggleston; The tech team to help us during a breakdown. Marsha Boss, best friends from Medical Support; What a Community! These are just a few of the host of people who think of things before I do. If I were to begin listing them all, well... they know who they are and have been permanent fixtures, year after year. Thank goodness when First Lady Hillary Clinton wrote "It Takes A Village," she must have been thinking of mine! Parke Davis Pharmaceuticals, Cyberonics, Dr. Chris DeGorgio, Dr. Christine Heck, the USC (RAH) football team, Connie the Lab gal, The FDA to approve Lamatil, the bookmobile, Gosh, my list is big. Many, many, many doors to my village. Know that Bory walks through my community with me. Know that I stumble. Know that you all pick me up. My village is big. Hugs,

Entry Twelve: August 16 and 17, 1997 16th- Color me "Down on the mat." Color me "Down On the Mat." These days happen once in awhile. Today I deserted all good feelings, got in the mat to fight the fight, and during the round, left the fight. Worst of all, had this fight with myself. I have, over the years, tried everything to fight epilepsy and tried to have a somewhat normal life. Today, color that dismal. I have had EEG's galore, the PetScan, The MRI, Brain Mapping, the CatScan, tried and untried medicines, been a good girl. I sport the Stimulator in my chest and Vagus Nerve in the neck. I have wonderful gals for kids and for the most part, an understanding husband who treks me from place to place to give blood, etc. Yet today, color me with a streak down my back. What more can I do? What more should I do? After several days of a few seizures, I am telling my referee to let me crawl out and recognize that the count is down just for now. Oy! This Pity Pot. This "I deserve" mood has to lift. It is definitely blue.This is not to say that all fighting stops. It is simply saying, "oh poo." The sun is up. I am breathing. I am logging seizures rote fashion. But, color me "yuk" for being disappointed today. Color my head that feels bloated, "red" and know that I have to be more cheerful next entry. Nope, as I said, "It ain't always peaches and cream!!!" Hugs, Shirl... who promised to share all feelings... and YOU, yell back... I'll save a color for you.

17th- "Days when nothing frightened me" When I was eighteen, one of my first jobs at Sears in Chicago, was to climb into my Red Baron plane, don my cape, and relieve someone at one of the departments while they went on vacation. I was use to change. One week would have me at Children's Wear. Another week in Men's Wear, etc. Thus I was trained to fly over, work, and make mistakes. A gentleman came by while I was working the Complaint Department. "Miss, my electric razor doesn't work!" With utter confidence I said, "Has to be the shaving cream!" When I told Bory, I was informed one doesn't go with the other. My point is, I feared nothing back then, blissfully unaware that from time to time I was having a Petit-Mal seizure. I worked a switchboard... the old fashioned kind with lots of wires hanging out, hold buttons, ring buttons...the works. One day, out came running the boss. Seems I had pulled all the wires out, disconnecting a bunch of people, and he wanted to know WHY. What a red face that man had! Of course I was fired. Thinking back, I wasn't afraid of anything if it didn't harm anyone. Certainly not health issues. I flew in my make believe Red Baron from job to job. When my seizures became apparent and finding myself in unaccountable ridiculous situations, fear took over. Living in Chicago at the time, I would plan how not to walk in to the subway... those types of fears. Today I log seizures, side affects, headaches, swallow pills, wear an implant, a helmet, and with all that attention to the word "Epilepsy," I also have the strongest desire at times to climb on the pity pot. As flexible as I was at one time, it is now "been there, done that." To remind me, even as I compute, my mouse glides on make believe brains. I did have days when nothing frightened me... or my wish was to see the next musical come to town. I must realize that this condition is here, being worked on, but here. So gang, I share my pity pot thinking too. It will go away. Hugs,