"My Inspiration"

by -Marsha Boss- Marsha is a very close online friend of Shirl Rapport, one of our journal participants. We asked Marsha to tell us a little about herself, her epilepsy, and her friendship with Shirl. Thank you, Marsha! In March of 1982, I collapsed at work, was taken to the "closest hospital with a CT-scan," had surgery to repair an ANEURYSM deep in my brain, and awoke 36 days later asking, "What happened? "Oops... bet I don't have any hair, do I?" All of this delighted my neurosurgeon, my husband, my daughter & a team of ICU nurses who earned their pay taking care of me. I, however, was confused, curious and wanted all the information..."right now....please!" When I asked how to spell aneurysm correctly, from the 'fog' of my hospital bed, my neurosurgeon said, " I think she's going to be all right." He was right..and I thank him to this day. It became his job to explain temporal lobe epilepsy to me. The dear, patient man... my neurologist, who had tested me (using nasal probes during a sleep-deprived EEG!), simply said, "Well, Marsha. You have temporal lobe epilepsy..which we suspected. You are doing well, but you will no longer be able to drive. I will be increasing your medications, and you should not be working until we get this under better control." Huh??? I heard only the word "EPILEPSY!" Geez, I was just dizzy! Classic denial set in for quite some time. I lost the job, anyway (Big Corporation reviewed ALL medical claims). Denial, depression, self-pity. I was a delight! Then, my wonderful husband signed us on with Prodigy! Wow! I found a new world of people who DID understand, and Shirl Rapport was the FIRST to welcome me on the Neurological Bulletin Board. She diagnosed my "pity pot disorder" immediately and soon I was HOME! I could type "aneurysm," "epilepsy," "seizure," ...and instead of "Oh, dear. How awful." I got support and those precious words, "I understand." I learned to walk (painful experience at 35 or any age!), worked with doctors and therapists to improve my vision, and I'm learning to slow down and "Seize the Day." A few years ago, Les took me to Hawaii via a stop at Shirl & Bory's house in California. Ok, Maui is terrific, but nothing could match "meeting Shirl." I was so excited that I left the camera at the hotel in L.A. But it was "Instant Rapport," as I call it. We hugged, talked, talked, and TALKED...well, we "mulled on the patio," as we had planned 'on line.' Today I can honestly report that Shirl, Bory, my husband, Les, and the wonderful bulletin board pals have kept me and my spirits "above water." I even went back to my dear Indiana University (via Distance Learning) & completed another degree in May. Without the support, the encouragement, and the level-headed advice & friendship that Shirl and the "Gang" have supplied so generously.....well, I'd probably still be filled with anger, fear, frustration, and "planted on the pity pot!" Thank you, Shirl, HUGS! ... And thanks and hugs to all who understand. Marsha Boss

Entry Fourteen: August 23, 1997

"Health Woes"

• "Keeping in mind that until recently, I never looked back."- When a doctor would look at me and want family medical history, well... imaging was made. I guess it is the same for all people who can't look back. I know zilch about my parents and grandparents, so my sheet of paper would, to the frustration of doctors, be blank. Imaging, at least gave them the view they needed, but not what I remembered. How many orphans or children placed in foster care have the same blank piece of paper? I would love some feedback on how you handled it. In the meantime, I began thinking of my cousins on my fathers side. I remember a boy who died early. Brain tumor. Another boy, Downs Syndrome. Another cousin.. he has seizures. But again, the family will not discuss it with me, so I leave it be. I have no choice. All these years, I have been prancing about saying, "This is not inherited." But now I am wondering... I would love to hear from you, knowing this changes nothing for me, except I will stop prancing. Hugs,

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Entry Fifteen: August 25, 1997

"Eyeball to Eyeball ...or Give the Man a Rubber Hammer."

"I have this little outfit with strings tied in back, the physical robe! Here's looking at you." -Shirl Part of the neurological physical is the doctor putting this "thing" by the eyes and leaning forward saying, "Follow my eyeball with your eyeball," and the little light shining in your eyes. Where am I to go? I have this little outfit with strings tied in back. The physical robe. Dr. DeGorgio also has a hand loose for this little hammer with a rubber hand. He taps the kneecap and up goes the leg. Well, well. I am alive! My eyeballs are still following the tiny flashlight back and forth and in the meantime, the other kneecap... tap... up goes the leg. I have to follow the light without moving my head. Then the temperature - now done in the ear. Oy, modern medicine! Done. Walking time to study the GAIT! One foot in front of another to check my walk. Sitting back down. The palm of my hand presses into the doctor's palm... hard. Gee, I am alive. But he doesn't flinch. The light is put away, my eyeballs breathe a sigh of relief, and that rubber hammer is tucked away. Out comes the computer and the mouse, beeping along my chest as I sing, "La La La..." then my vocal chords go, "aw shucks." My 40 seconds of stimulation is starting. Dr. DeGorgio and Dr. Heck fill up the notebook and I gasp. For this they went to medical school, and extended classes for maybe 15 more years beyond MD training. My legs say, "I can walk like a Powers Model." Well, at times I sway and then I wonder, "Shirl, did your mouth use mouthwash?" Close is close. Aside from the stimulator stuff, this, as any neurological patient will tell you, is the TEST of TESTS. Down to the lab so my vein can do a blood level, then a bottle so small that it defies "between the legs." ...and home I go for another month, unless there are emergencies with my battery. So far, none. But my battery is suppose to go another year or so until it is replaced... surgically. Anyway, if anyone was wondering what the neurological test is, look for the rubber hammer. And Dr. DeGorgio will verify everything I have said. Except, he will probably add on 5 more years of Residency. Hugs and here's looking at you,

Message from Nancy Shirl emails me her entries for this journal two or three times a week; sometimes a full story, other times several emails, each with a brainstorm or two that I connect into an entire entry. In between these entries, I get friendly notes from her which I can tell apart from journal entries because my name is included throughout the notes. I always enjoy and look forward to them. I've discovered Shirl's dry sense of humor, deep double meanings to phrases, strong sense of concern for others, and something else... Shirl has an intriguing and humorous way of telling you exactly what she means and is thinking, in a very tactful and hidden (grin) way. It causes me to pay extra attention to her notes so I don't miss something that could knock my socks off. More times than not, I've sat at my computer and broken into a laugh or a very knowing smile. Shirl has become my Jewish mother, sending me cyber matzo balls, chicken soup, kind and wise advice, and more than my share of hugs (which I am supposed to pass around). Working with Shirl on this journal has enriched my life, adding new words and meaning to some of life's favorite melodies. One evening I opened up what I thought was one of her normal goofy personal messages that I so enjoy. My name was meaningfully placed (I left it in) where she emphasized her message and emotions. She was clearly talking to me, but toward the end of her story, she asked if I would use this in her journal. All of Shirl's entries come from her heart and with honesty and gratitude, some with pain, some with worry, concern, wonder... many with generous servings of humor. Each help tell Shirl's story and each give us an inside glimpse of her strength, her bravery, and her struggles, which she shares so that we might better understand everyone with disabilities, not just her. This particular entry adds a most important dimension to Shirl's story. Sadly, perhaps some readers might identify in some way with this entry, which is not about her epilepsy. It is about a very different kind of loss. - Nancy UPDATE: March 11, 1998 Gary has written to his mother and to me! See Letters from Gary

Entry 16:

"I haven't told anyone in a long time."

or, -"... to accept the things I cannot change."- August 28, 1997 Now, sit down one more time for me, ok? My son, Gary, is an escaped fourth time crook. Geez that wasn't hard typing that, Nancy. When things are going well, this is when Gary is at his worst. In 1984 he and his first wife (a doll) Susan, were living with us, as was Bory's mother, whom I loved. One morning on his way to Law School Gary never came back. He stopped at a bank and a JoJo's Restaurant, and cleaned out the safe... etc. He was overseas before nightfall, Nancy. We found, or Susan found, 10 different (TEN) passports. We were in the position of calling the Police. Fraud- he took envelopes meant to be mailed paying bills to gas, electric, phone... etc., scratched out the "to: name" and put his name in. He forged Bory's name on other checks. It took several days to realize one of our checkbooks was gone. It isn't something we would normally check. Clue: Late notice from the Phone Company. The damage was about $80,000 including JoJo's and the B of A. His sports car (well, ours) was found in the middle of the street near Fullerton College. He has married and deserted two wives, three children, all in Israel. Keep sitting. There is more, Nancy. The aunt who took me to see my first doctor, Dr. Gibbs, was married to a Louis S. In Chicago, 30 years ago, he and his partner, Frank B., in a chain of discount stores stole 45 million dollars. Some Country took them in (Rwanda?) and did not extradite. The FBI closed up the house in Highland Park, Illinois. My Aunt was in shock for a long time. She had thought he was away on business. The FBI was convinced that some money was left behind. None was, of course, but we all were questioned over and over. It's ok. They were very kind. Frank came home to prison as did Louis, but not for theft. It was for Income Tax Evasion on that money. The stores all closed, the wives divorced and my aunt has nothing to do with anyone anymore. She calls it "you don't take memories on a new life." Brinkley kept reporting the 35 million theft, the biggest in history. She just wanted no memories. None at all. (That hurt, but I understand.) We turned on the daily news without suspecting anything. That's how we found out. Not a clue that my Uncle Lou had turned into a robber (of his own stores, along with a Bank V.P.). Then Gary did the same thing. Well, it is so unbelievable. Gary was a delightful pregnancy and a delightful kid to raise. If someone... anyone, had sat me down and asked why this happened... I just don't know. It's just as when my aunt opened up the door to the FBI and they said, "Good morning. We have come to padlock." I had no idea that he had never registered for Law School. He opened up books like he was studying. We would tiptoe around not to disturb him. He never registered, we found out later. What and where was he was all day? Susan is re-married now. I believe my daughter, Pam, at one time, spoke with Gary. Is there any way to describe signing papers, with the police, marked FRAUD? No. You and I would have to sputter out two identities to cash a check, even for $5.00. Gary went from supermarket to supermarket cashing checks. When I said in an earlier entry that Ralphs Grocery Store and I have a special relationship, I meant it! They were one of the markets. My prime rib incident was truly, truly a mistake during a seizure and they believed me. But I was fingerprinted and held until Dr. Kim reached them. It's a police thing, Nancy. I told a social worker, "Because of me, Bory has heart problems, high blood pressure, and now... I am bad. I have a son who is also a crook, and I didn't even see it coming. She looked at me and said, "Get a Life, Shirl." She sent me off to Alanon to learn that I am responsible for none of those things, except me and my actions. She convinced me with, "Oh, I had a fight with my own hubby. Could you please raise his pressure up ten points and clog one part of an artery?" I said, "You know I can't do this to your hubby!" Then she told me to to "shout that out" and I did. Then to help me believe it, she said "Get out and learn what you are responsible for." We people... people with any problem, whether financial, emotional, physical... tend to feel our focus was in the wrong place. Could you use this in my journal? I haven't told anyone in a long time, Nancy.

Yes, Shirl.... we can definitely use this. UPDATE: March 11, 1998 Gary has written to his mother and to me! See Letters from Gary

Entry Seventeen: September 4, 1997

"Some People Call Me Crazy."

There are a few people, who when seeing a seizure, (the jerking, the staring off or whatever action the seizure brings on) say such things as, "She's crazy." The fact that by the time those words are uttered, my seizure has gone through all of its stages and that I can hear those words, doesn't affect the person uttering them. They are uttered, and I hear them. It took me a few years to understand that they couldn't possibly understand what they were saying. It took a lesson from a letter writer regarding something I had written in Newsweek, to jolt me up! In slang, I had said, "I look like I am ready for the loony bin." and, "Am I nuts?" Me? I wrote that for 45 million people to read and there was no taking it back. In defending myself, I had given myself a stigma. This woman, in 1994 said, "Mrs. Rapport, where do people like us go? Where is the 'Loony Bin' even for the very mentally disturbed? Last I looked, it was called a 'Hospital.'" I kept reading that woman's words over and over. I had thoughtlessly used them and defended them, in the name of slang. Oh sure, I wrote three times apologizing, but also thanking this gal. What I had been doing to words was inexcusable, whether it was describing me, my seizures, or anyone. "Out of the shadows," below, illustrates and informs with shock from around the world. This is when I began to think of myself as heart patients do. I had a condition. I sat and listed all the symptoms of various conditions and never once would I have said, "Are you crazy? I'll get help." Recoveries of all sorts happen at the least expected time. When I began looking at myself as just another ailment, my attitude towards me improved. I surely hope that stroke, heart, diabetes and other patients feel the same way. (see more sites listed below.) Okay, mine is more visible at times. Our Medical Support Board at Prodigy, our web site and the whole works... shows me that I should some days just sit and scan another ailment. Oh, I haven't felt alone with this in a long time. But visiting some of the other topics on the bulletin board reminds me, "Good gosh, for me to use the word "Crazy," ... that was crazy! "Out of the Shadows..." I wrote to our friend, Kay Grames, who, with her magical mouse, searches the web when we have tried it all and can't find it. I had been looking for an article about the misunderstanding of epilepsy, with no luck, but Kay found it for us. Thank you, Kay. Fact sheet N166, June 1997, Economic Aspects and Social Consequences: Epilepsy (From the World Health Organization.) is a shocker. Around the world, from country to country, the beliefs, misunderstandings, superstitions... are often worse than the disease, itself. Such inacuracies hinder advances in medicine, research and treatment. In Cameroon, I would be considered inhabited by the devil. In some parts of India, my evil spirits would be "exorcised" by tying me to a tree, beating me, starving me... and more. In another country, my saliva "would spread epilepsy." Until 1956, 17 states in our country prohibited people with epilepsy from marrying, and it gets worse. Please visit our interview with Tony Coelho, Chairman of the President's Committee on Employment of People with Disabilities. Thank you for the opportunity to bring my words, through this journal, out of the shadows. My hope is to help change the very inacurate perceptions of epilepsy... as well as other medical conditions.

Newsweek: Shirl Rapport was featured in Newsweek Magazine Aug 1, 1994, on page 12. The article was called: "Hush, It's Epilepsy" by Shirl Rapport. Try to pick up a copy at the library! You'll be so glad you did. It is another opportunity to get to know Shirl (and epilepsy) a little better. American Diabetes Association Diabetes.com Heart and Stroke A-Z Guide National Institute of Neurological Disorders and Stroke Prevention of Stroke, Heart Attack and Symptoms of Alzheimer's The Congenital Heart Disease Resource Page

Entry Eighteen: September 14, 1997

Expectations

"Years ago, I applied to several insurance companies. I was a little younger, a little healthier. Well, I was turned down. Not even rated. Before that, I had answered... no, I had lied. It was a small amount. I got caught. The pharmacy keeps records, so when a script is filled, health gets computed, etc. Telling the truth got me zilch. Lying got me zilch. Well, I did learn a lesson about employment applications, surveys and other forms done by a pro, the words don't get noticed. I am the first to admit ( back on soapbox) that I could die early. But words like "Deaf & Dumb," "Mongolian Idiot," and "Having Fits" etc, are bad... just bad." Shirl Well gang, we are all familiar with the words from the OLD days. The first one, besides "crazy," was the word "fit." Some people say it's all they know, as if to defend the wrong use of that word. After all, major industries were using it on applications. For example, Life Insurance Companies found it convenient to use the word "fit," "feeble minded" and "crazy-like behavior." Once and for all, these words should be put to rest. The obituary can read, "Here lies words that people find convenient to use, out of mouth, on paper." Shovel those words, throwing in "mental case," and the grave is dug deep. They were uttered by many. A year ago, a survey I was asked to participate in, involving another health issue, made its way to the garbage can. A renowned psychologist who should know better, had in the corner of her survey, "... any fits, any feebleminded" in the family? I walked up to her and said, "Well Lady, this doesn't speak much of you." The next survey had the words "seizure," "nervous condition," "feeblemindedness"... I called her university, the one I go to... University of Southern California, and asked, "She teaches here???" Has anyone met a feebleminded person? I wonder if this woman teaches her students that it is ok to say "retard?" Gosh, USC was shocked. And I can only hope she is no longer on the staff, not because of me, but because of her utter stupidity. The foundation that wanted her work... can they read? Obviously not. And so, with fine words like "Foundation," "University," and "survey," no one read this garbage. That's the only way I can term it; and I hope that people out there, seeing words such as "Fit," "Deaf & Dumb," and "Mongolian Idiot" will have to consider the source, even if it comes from a psychologist of this type or an insurance company, all groping for words and not doing very well. We, in the Disability area of the Medical Support bulletin board on Prodigy know how to read. Hope the burial of these words brings out lots of shovels.

Entry Nineteen: October 1, 1997

"Music to Our Ears!"

Occasionally I get an email from Shirl that ends rather abruptly with symbols or jumbles of letters. The first time I didn't pay any attention to it. An expert at quick hang-ups and "good byes" in order to get back to work, I simply figured that Shirl was in a hurry. I soon found out that Shirl was seizing at the end of those notes. I've got Shirl pegged as someone who always turns off the light, locks the door and flushes. After all, she still sends me the notes, seizure and all! It is just another one of those things that Shirl does that makes us smile. While she thinks she cannot sing, her email, journal entries and bulletin board posts are all music to our ears. After reading Shirl's entry below, scroll further down - Shirl has given me permission to post a sample of what her seizure emails look like. -Nancy

Shirl says, "There are many things I can't do. Going back to my school days, I could care less; did them anyway. I sang off key. I didn't think so, and when the school choir needed a soprano, I donned the maroon robe, climbed up to the last step of the platform, and burst forth with whatever the choir was singing. Mr. Zutz, our Choir Master, had been sick, so it took a week for him to discover me- the off-key person. Altos didn't want me. Baritones had plenty. And the sopranos had already built this spot on the platform for a body to sing. A dilemma. I had to promise to mouth the words, wear my maroon robe, stand on the platform, and pretend. Well, this seemed fair. But, during one excitable moment of the Star Spangle Banner, I burst forth. Didn't mean too. All eyes found me. Mr. Zutz put scotch tape on my mouth so I wouldn't burst forth EVER. It was then that I really realized there are some things I can't do. I can't fly a plane. You all know about my experiences with the automobile and the dog who wouldn't cross the street. And yes, as an epileptic, I wouldn't fly or drive a car. But I yearn at times to sing. "So sue me," I say to Bory, who rapidly searches for cotton balls. I get carried away with God Bless America. So, okay I seize... but to sing off key also? God, that is not fair."

"Seizure endings" Just another step toward understanding more about various disabilities and conditions, compliments of our friend, Shirl, the Singer. ...and when I try to read it, the tool bar bounces. I will wait...but have had notes saying "WOW"......Hugs, and off to bed early. Oh, In the packet I am mailing, I threw in a piece I wrote for ...startexxZXZ cccz ...I never expected old and new research to plop me back on the soapbox.....but, the pit in the stomach, and when did we stop using Mongolian Idiots and say Downs...when did hearing impaired replace Deaf and dumcvvvs zxxxxxxxxxxxxxxxxxxxxxx `````````` ` n*9 ... I think I wrote yesterfd xf fffffffxxxxxxxxxxxcci " Opps, just had a seizure and didn't want to hide it.

entry 20

A Potpourri of Thoughts...

Shirl often sends me tidbits and pieces of thoughts, concerns, beliefs and humor. These short entries give us another wonderful glimpse of her inner self. I'll be sharing them here from time to time. Be sure to check back often. -Nancy ~ Not long ago I would say, "I am 63 years old." And people would answer, "Noooo, you are kidding!" Now people respond with, "Do you need help carrying groceries to the car?" "Feel better" is another statement, even though I haven't complained about being sick. So when did getting old happen? And simple names, stuck to my computer so that I can remember how to spell them... When? I can't give a date, a week, a month. I do recognize that my patience has worn thin. If a nudge nudges, I say, "Stop!" not caring about the nudger. Today someone put her foot down during chat saying, "Do this now!" I looked at the screen and said, "Get lost, Busybody." The Shirl of ten years ago would have tolerated silly behavior. Not today... I don't have that many years to go, to spend them pussy-footing around. So, when did age- umm, "old age," happen? Surely, when I wasn't looking. Hugs, Shirl. ~ (This is regarding being so honest in her Newsweek article Shirl wrote called, "Hush, It's Epilepsy" August 1, 1994, on page 12.) I told 45 million people I squeezed my roast beef as the hostess to an Aetna get-together. Bory was the Regional Director. Anyway, yep... while wetting my pants during seizure, squeezing my food, smearing mashed potatoes all over. Newsweek called me often and asked, "Do you mind being so honest about pishing in your pants? You hubby is an executive and all...?" And I answered, "Seizure is seizure. I learned from reading Prodigy that I wasn't alone and that saved me." Mr. Hackett, Associate Editor, said, "Okay." The words stayed in the story. - Hugs, Shirl ~ Dear Dr. DeGiorgio, Dr. Heck and all the gang: Thank you for your sense of humor. Never once did you worry in front of me, that the research project would not be approved. All that time, your time, you just coughed up phone number, pager number, beeper info, standbys if you had to leave town... Never once did you say, "I worry." My stimulator thanks you, my battery thanks you, my magnet thanks you, my electrode thanks you and a few million neurons thank you. Hugs, Shirl. ~ When my friend, Marsha Boss first came to visit me, she slung back her bangs and said, "Here is my dent!" And me? Like a surgeon, I examined it, stitch to stitch. So Marsha gave me, among other things, envy! I loved your dent, Marsha. When I saw Dr. DeGiorgio, I said, "There Doc, there! Dent me up. It's okay." I don't want to offend anyone, but as I tell Marsha, "Marsha, if you are going to have a dent, and you do, that is the extra hole God pours love into." Only best friends can say this. I have carried on about my not getting a dent, having the temporal lobe surgery, that it is Marsha how lifts me up. Best friends that started online with Prodigy! My low spirit starts off "M A R S H A!" and by magic, you hear me from California and answer. Hugs, Shirl. ~ The Death of Thousands Daily- Thousands and thousands of neurons die every day in my head. (We have millions, so no tears, no hankie) Well, sorry to sprint off on my Telegram Delivery Bike and inform you... A blink uses 100. - Hugs, Shirl ~ CELEBRITY SYNDROME- When I hear of someone who has epilepsy, who has accomplished something- I go into my celebrity syndrome. I make him/her part of "the family" and experience a kinship of "you too?" Other people suffering other ailments must do the same thing, huh? Thomas Edison was sooo long ago, but I rattle his name out... "Fellow Epileptic." And oh, I guess he discovered the light bulb. Alfred Nobel... yep, to make up for his TNT invention, this fellow also created the Peace Prize. So, like a detective, there are times when I sniff out a celebrity with epilepsy. As if the public would be more accepting and know that brains work. Well, I didn't invent the light bulb, or make Lou Costello the funny one. But I tend to think to myself, "We share what most never understood." Hugs, Shirl ~ During my Alanon days, we learned how to write a "hate note." You name it, we could write it, but the only rule was that we couldn't send it. Writing it was to get it out of our system, then we were to rip it up in little pieces and put it in what we called the "God Box." Me? I had a shoe box. It was my stationary at home God Box and it was filled to the brim. By the time I was through writing my thoughts, sometimes printing, then reading aloud to myself, ripping it up, and sticking it in my God Box, well.... whatever I had to get over... was over. Once a week, in the beginning, my sponsor would sit with me, and we would rip some more... no chance of anyone reading it. I discovered that hateful thoughts can last just so long. Soon, I found out that this was the best way to get rid of frustration. "Hateful" is a strong, bitter word. Well, the thoughts were not going to win. I also discovered that writing is my salvation. Hugs, Shirl. ~ Now, the FDA for a moment. I have done eight studies before FDA approved, starting with Lamotrigene (Lamotril). Then the MRI, first called nuclear imaging. Next the CAT, The PET in Pasadena, Mapping at UCLA with a camera and computer hook up. Then Felbamate, a drug for Kaiser by Carter-Wallace, which was discovered not good for kids under 14 (or me). Vigabragin (now called Saebril by Dow. And then my Stimulator. The FDA knows me as MADAME X. Once, I dropped in to say a quick "hi" to one of the doctors.. He smiled broadly, "Shirl, I read about you in a current report!" I asked him how he knew it was me since I am an "X" and he replied that he recognized my symptoms, the list of tried drugs, age, background, etc., and saw ME. I've been known in other studies as "Respondent," "Victim," "Person," and several other names. "X" was a new one. I can see why studies take years. It's not just the Thalidomide scare. You have to lay out the protocol, find the people who fit the protocol, get records from everyone, see what interactions there are with other drugs, forms, approvals... on and on. I see people cry that the process takes sooooo long. For the body, there is a buildup time, and a down time, and a side effect time. But most of all, it's finding the people! For a Parkinson study they used two people from Canada. How sad. No American came forward. Then, some people want to be paid for participating. Geez... these are independent studies that are going on. Never trust anything where a person is paid for the answers. USC comped Bory's parking. - Hugs, Shirl ~ I love this entry from Shirl. I left it as is, even with the "do I make sense" statement at the end because it is just so sweet, funny and uplifting. I know you'll enjoy it too. I love DoDont as my nickname in Chat. Makes things so simple. But then again, thinking back, those words, if applied, describe their simplicity, needing them as reminders. Borrowed from a 12 Step program, Alanon, I slowly learned years ago what I could DO, and what I DON'T. My One Day at a time book says, for example... Do I hold grudges? Do I pound myself against the wall over a problem and find the problem still waiting? Do I pray? and on and on my Do's go. An example of my Don'ts... Don't pound the wall over problems I can't fix. Don't be a martyr. And of course, decisions are so easily made. Do I? Don't I? Can I? Can't I? Should I? Shouldn't I... If I don't do, what I should do, then I take my should have do's and shouldn't have don't's with me wherever I go. Do I make sense? If I don't... will splain more... Hugs, Shirl (oy vey) ~ We call this one Neurospeaketh... and it is one of my favorites. As I've grown to know Shirl, it is very apparent to me that terms are important to her. We should all take cue and make note. After years of using older words and phrases, I admit that we often don't know how we sound to others. It makes me crazy. :) Having had a great laugh on the doctors, my neurologists, for using what I call "Neurospeaketh" when talking to me. Now to be fair, I too goof and stray to old terms at times. "Spells." Thinking about the baby of a word, what is a spell? Do I hang around with witches? Do I light a candle, spread my hands over it, sway a bit with a "hey nonny nonny" look, predict like a fortune teller? Fly with the ghosts?" I can see that my innocently saying SPELLS is a far cry from a medical definition, and would cause THOSE looks. "Nothing wrong with me Sir. I just have spells!" Ahh... "Blackouts." Does the room go black? My screen? or, while being unaware, my brain takes a leave of absence? Blacking out, and blocking out thoughts and feelings. "Uh, yes Sir..during my spell, I blacked out." "Dizzy".... well, upon interviewing for whatever, staring at the person I'd say, "I have spells, blackout, standing, have a bout of being dizzy, all in a short time." Gang, you can imagine my delight when I could explain myself simply: "Oh, I have seizures. Pass the food." Last one for now. "My brain wiring disconnected, for a bit, sending electrical charges throughout my system, affecting the chemical imbalance of my noodnick neurons!" I laugh over the fact that my Doc loves the words: "events, episodes, happenings. ..time to be fair...at times I start it. My seizures are caused by an ailment called epilepsy. So many slang words to describe one ailment... tho I must admit... "chemical imbalance" sounds nifty. And while we're at it, lets share another called "Patient/Talketh" There are times when a doctor has stared at a graph or an imaging picture and gotten carried away in explanation. I have, on those occasions responded, "Wow, Duh, Oy, Why, Hmmmm" as I stared at the brain wave pictures. My doctor, his nurse, and I knew we didn't know what he was trying to explain to me. A simple "not good, not bad, getting better, oy, mama mia" would have been okay. But I listened as he scribbled out various prescriptions. ONCE... just once... I am going to stare at a scan of all those things running around in my head and say..."Hey nonny nonny." They never get this from me. And "Hey, nonny nonny" sounds like it would get their attention, reminding them that I am in the room. What person could resist that comment? I went over all the things to say at pictures of my brain. "Wow" doesn't enhance me anymore. "Oy" is too typical..."yeesh" will discourage the Doc. So, I settled on Hey, "nonny nonny." My problem: what is a nonny for that matter? I have heard the expression a few times, but never in the "I MEAN BUSINESS but am not frightened" stage. Hope any of you who use Hey Nonny Nonny will let me know. Until then, I will use it carefully. If Dr. DeGiorgio or anyone says, "huh" and my brain falls off the scanner... well, let us call it Research of Words for Shirl. Patient/talketh words. Has a nice ring, a nice goal... shhhhhh, don't warn DeGiorgio... or the brain... this is to awake both. ~ "Just Ask" June 10, 1998 With imagination, we patients in the medical community have to learn the most unusual piece of equipment, comes by request! I wear my green helmet without the hockey mask for seizures. My helmet has its fair share of cracks. Once in a while, I look at the cracks and realize my own head would have taken the fall, leaving me dead or a vegetable... brain damage! Mr. Hewitt, the Rams Equipment Manager, fitted me with a great, serviceable vest. One that was strong enough to allow Joe Namath to run about as quarterback, without breaking ribs. Having broken my ribs a number of times, I asked for help and discovered equipment for my chest. I dress for the outside, as a sports player dresses to join the huddle. Every once in a while I remember... ask and see. The latest equipment which truly amazes me- the telephone. This is a social instrument, a business tool, a way to communicate. The telephone company, thru Pacific Telephone and General Telephone are responding to the needs of the disabled, FREE. And it could be a temporary need; they don't ask when the equipment will be returned. Page after page of their guide says "free," "trained operators," "Up to Date computers to get your word out." An example: If you have a difficulty breathing, drooling, hearing, seeing, mobility difficulty, weight difficulty, memory, manipulation... there is an army of people and equipment out there IF you ask. The telephone companies, through a group called Accessibility Resources, partially funded by The Public Utilities Commission and the California Public Utilities Commission and pennies on everyone's phone bill, provides the equipment, the relay service from you to equipment to specially trained operators in English and Spanish. (Although I suspect you could ask for another language) Next time you pay your phone bill, look for the words "Surcharge for CRS." We all pay it. The pennies collected goes in to a Trust Fund called CA Relay Service and Communications Device Fund." I always thought that I could have large print for dialing but never did I dream of a "relay call!" I always thought I would have to be totally blind, or totally deaf, or totally dismembered... not so. As wheelchairs now rise up, as more and more people are donning helmets and as more and more people find an active way to live... I now find head sets, computer hook ups, regenerating voices with sight left behind. All of the new things I saw and requested were from my visit to The Abilities Convention in Anaheim, Calif. If I learned one thing, and only one thing, it was "Just ask!" Asking brought the Ram equipment in to my life, the hockey equipment, my tinted glasses to put out glare and bring in daylight. If any of you qualify for a service, call 1-800-735-2922. Remember, this is FREE. What have you got to lose? Hugs, Shirl.

Entry Twenty-one: October 22, 1997

"Toxic Terms"

However the word, "toxic" entered the medical world, I don't know, but it definitely entered mine at times. We would read, "toxic dump," "toxic spills," "toxic waste," and thought of oil and such. Then I entered my doctor's office, actually staggered in, and heard, "Oh, Shirl... you are toxic!" I studied my urine... nope, no oil. For years I use to hear, "your medicine has climbed too high for your system," common for me and Dilantin. So it was lowered for a few days and then I was slowly back in the mode my brain waves needed! But medicine, being what it is and the body being what it is when taking an ongoing med, has side affects for a bit. When all the drugs have been tried, a reduction in what works best is the only answer when we've "climbed too high.". The Up and Down technique is what we call it, and only a blood level test helps get us back on track. So now using words like "Up and Down" and "Balance," slowly my doctors began adding "toxic." The Medical industry had borrowed words from the Oil Industry, and we've begun tossing them about too. "Toxic" sounds soooo awful. Okay, staggering, bumping into walls, heavy head... all that is not a picnic either, but I'm not spilling around the ocean floor. With my stimulator appointments, Dr. Heck at USC doesn't just amp up my battery. She terminates it, then amps it with a mouse. When did the words change? Are you noticing changes in medical terms, as well? What other ones? Remember when we used to say, "x-ray?" Now we animalize it. We PET, SPEC, CAT and MRI. Scanned and imaged... Remember when we wondered what those black stripes on our food package were? To be scanned!

Hugs,

Entry Twenty-two: October 25, 1997

"I'm From Missouri"

I oughta know... Is that how it goes? I went through a phase where I had to prove to everyone, including myself, that I could do it. Do what? I don't know, but that song, "I'm from Missouri and I oughta know" stuck. To prove I had a brain, before any interest developed, I was degree crazy. I heard a life insurance person complain about "The Life Test." So I said to my hubby, an established Life Insurance Man, "I want a license." It took three times before I could pass the test. The first time I went in very sure that Bory talked in his sleep and that some had rubbed off. Term, 20 pay life... In my mind I was all set. Ooops, failed. The second time I studied, seized during the exam, failed and caused disruption to the others. The last time, California cried, "Shirl, give it up." (We had become friends, the State Insurance Dept. and me through this crisis.) They gave me a room by myself, a monitor to sit and stare at me, and wow... I passed! Next came the securities exam, mutual funds, puts, calls, Dow stuff. I was determined to pass, to prove to myself that I could do it. I studied and to my happiness, passed. I was called a "Series six and twenty-three." Sevens traded stock. Six and twenty-three suited me fine. Plus, I failed the seven... and wanted nothing more to do with Dow, Wall, and all those words. I went back to college and drew an A for History from 1865, Creative Writing, English 101, 102... until I was caught. It seems that once a class is passed, one cannot re-take it. And the college was not into my "proving" days. I took a basic tax class with the government and used my fingers to count. At the end of that class as I was standing in line to do something else, sanity hit. My reasons for wanting classes and diplomas was to prove I did not have a sick brain! Well, Gang, of course my brain is sick. I took pills, went for tests... I was not sporting around the common cold. And I had to stop being ashamed of me. When I realized that, I said, "Shirl, not everyone from Missouri will say, "Prove you think." Eventually I tore up my Life, Disability and my Securities appointments, and although they were wonderful fields, I was a rotten salesperson. I never would have gotten "depreciation in taxation." Be glad for me. No one could have told me what I was doing. I had to figure it out myself. Hugs,

Entry Twenty-three: November 10, 1997

"The Jacket of Jackets"

There have been times when I have had to be in the hospital for a few days because I was experiencing "status" which is one seizure after another, with no break in the pattern. My neurologist would have to protect me; the bed was lines with pillows to make sure I did not injure myself with all the seizing about. After status had passed, I forgot myself... forgot that bandages, headbands, booties, robes, bed rest, and meal tray was part of the hospital. When I tried to lift up an arm... no go. I found myself wearing a straitjacket. Today I believe they are called poseys. Along with bed pans, urinals, and the works, this is hospital gear in the neurological department. I was beside myself to find that this is what the doctor had used for me to keep still! It took me a few trips to the hospital to realize what a pain I can be, and seizure-wise, a real pain! The safest thing was the straitjacket. Arms in the back, long ties with velcro in front, designed for movement, but not hurtful movement. And who were they concerned about? Me? But the word brought back days of Frankenstein movies. I had never thought of it as hospital gear to keep surgical patients still. I was shocked. I spent the first night at the hospital, forgetting my cracked head and hemorrhage. I just glared at the nurse who wouldn't untie me. Now I look back thinking how I condemned myself for many things and became ashamed over many things. Writing about the straitjacket now... well... the truth is, I began to depend on it to keep me safe during seizure. I insisted that Bory get me one for a chair during seizures. I learn. Yes, I do. It was hard thinking I was alone with this. But my common sense told me that these things were not stacked up for me alone. So, I have my football flak vest. And for hospital use, a straitjacket. If there are any other jackets I should know about, please e-mail me. Hugs,

Entry Twenty-four: November 15, 1997

"The Club"

Shirl talks to me sometimes in email, as if in conversation. A little note here, one there... I run around picking them up and piecing them all together to construct the whole story, but it is much more fun that way. It gives me a special view into how these thoughts just keep coming to Shirl, which by the way, is the ideal way to write your journal. Thank goodness she keeps coming up with these treasures. It is safe to say that I've felt like a writing tablet on Shirl's night stand from time to time. Things could definitely be worse. There is a group of people, most who have never met each other, who belong to a club I call The Braveheart Club Band. Not everyone is able to be in this club, but everyone is invited. You don't have to be able to sing or play an instrument, but we all enjoy your music. You don't have to be brave to be in the club, but it is filled with only the bravest people in the world. When you meet a club member, you see a heart filled with love. Not just any kind of love, either. This love is the love of living, the love of friendship, the love of the most important things in life. When all is said and done, they already know that they won't be counting how many toys they had, if their clothes were purchased at the right stores, or if they impressed enough people. These club members share a special connection for helping to move the process of medicine through history. These are not the doctors and nurses, technicians, researchers, teachers or scientists. They are the people who were the patients who took the first vaccines. They are the ones who were first x-rayed. They are the first to slide into the MRI and be imaged. These are the people who were studied, probed and observed, and who remembered to hold still, take their medicine, follow a diet, and report in. Some were hooked up with wires and others were strapped in place. Some were both hooked and strapped. All club members are successful whether the study works or not because in the end, they all provide useful information one way or another. Sometimes Shirl writes about the medications, some that worked, some that absolutely did not. Shirl tells a story of switching her blood sample cup with a soft drink and bringing some humor to the exam room. She talks about the special caps they wore to cover a portable EEG machine, electrodes, tubing that ran to a TV set and computer. She talks about being bandaged with electrodes on each cheek. This was Phase One Telemetry. Then came Phase Two... the implanting of electrodes. High level mapping to see where seizures were beginning kept them in the hospital for three weeks. These club members didn't go beyond their beds while the doctors watched to catch a seizure so that the surgeons would know where to go, if they could. Sometimes Shirl pops back in at the hospital to talk to new club members because she knows first hand, the need to see a face, a face of someone without a shocked expression. The equipment has improved, the procedures have moved to other hospitals and other countries. But the patient is still the same...someone with a brave heart, full of love, who will add their music to the band. We have quite a few club members online. Their good works and support are evident and for this we all thank you. If you have a story to share about being part of a study or research, please write to Shirl and we'll post a few selections here. Hugs,

Entry Twenty-five: November 22, 1997

"Imaging, Music at Times..."