Entry Forty: June 22, 1998

"Sixteenth Day; I Peeked."

Well gang... No matter what happens, (well it does, but I am superstitious) it has been 16 SIXTEEN days of no seizures! zilch. Yes, I peeked at my log. (I ran out of counting fingers). It has been awhile. 16 days that my brain has stayed seizure-free! For me, this is a wonder! And now that my Pacemaker is on Fast Track, turning on every 1.8 minutes for 40 seconds, I had to celebrate with you! No matter what day 17 holds, "16 days" is GLORIOUS, meaning that my lobe can do it! I carefully put down the log, gave myself a lecture about how I had said, "looking is not a good thing" and then I looked at the log. I can just imagine what some people feel when they go seizure free for a month, two months, and more. I still think, "My gosh, 16 days and nothing broken." I suppose I could get the "Don't Build Up Your Hopes Talk" but there are times when my hopes deserve building up. I won't tell Dr. DeGiorgio yet, although, he is anxious to know how Fast Track with my Pacemaker is working. I am his first "1.8." When I was much younger, a date or a play or an outing were part of my thoughts. And I had dreams of someday, someday... Bory and I would own dozens of restaurants in Chicago. I would have a dozen kids, and at age 63 would keep being 39. I would sorta be seizure-free. Seizure-free turned in to the hope of less seizures, maybe two a year. The Restaurants? Bory became a Tax Planner, my kids came, in between a lot of miscarriages, and my seizures kept growing. Know I am trying so hard to forget, and so hard not to look at my log BECAUSE I want to remember 16 glorious days actually happened to me, and to my lobes. WOWEE! Hugs

Entry Forty-one: June 29, 1998

"Look at the Old Girl Now."

As I joyfully reported my sixteen days of "No seizure activity," along came days 17, 18, 19, 20 and 21... each bringing a seizure! I looked in the mirror at the face that said, "Look at the ol' girl now!" So suprised. What a calamity. Then I realized that my temporal lobes weren't teaching me a lesson. They were doing what they always do! I sat myself down and rejoiced for 16 glorious days with no activity. What a kick! Now, I need you to know that this realization didn't come on by myself. I wrote "boo hoo" sob notes to fellow "sister bees" (BeeScene journalists and readers). "Did you see?" I asked them, "First I brag, now look at the ole girl. And how do I write the next entry? Skip day 17, 18, 19, 20, and 21?" Well, darn me. I had written in my log all glorious 16 days. What now? Sister bees jumped in, "Celebrate 16 days of freedom!" So take out the party hats, the whistles, the balloons, and let out the cheer! To think gang, I almost called and reported a sorta cure to Dr. DeGiorgio. Would have given him a heart attack. I told you I was holding off telling him, and I did. Whew! Take my word for it - having this journal, a chat with dear friends, and a sharing of impossible ideas and facts helps. As I wrote the last entry I could feel you all saying, "Go, Girl go!" Who could ask for more? My E-mail after that last entry was so beautiful. Nancy, Debbie, Kay, Patty, Linda, Myron, everyone jumping for me saying, "Look at the girl go!" I felt it through the screen. I can't say enough. It is a transfusion of sorts. From keyboard to screen, the flow of life on whatever terms it is dished out.

Entry Forty-two Shirl attended the Ability Convention on May 31 and wrote this back on June 3. My mailbox, being what it sometimes is, swallowed up this entry, but it's here now! It looks like a fabulous annual event. Thanks to Shirl for sharing this!

"The Ability Convention 1998"

The Ability Convention 1998 just finished a five day stay here at the Anaheim Convention Center, Anaheim, California. I was able to attend with Bory, on Sunday. Gang, all I can say is "WOW!" As we pulled in to the parking garage we saw van after van, specially equipped cars, dozens and dozens of Handicapped signs, and people! People wheeling, limping, staggering confidently to the show area. Some with both legs; some, no legs. Down the van/car ramp, disabled people arrived! This was the Show of Shows. The exhibitions, displayed mostly by the people who use the equipment, were available for all. I came face to face with people who had palsy, people who couldn't swallow, people with trained dogs. And an outfit of two men who refurbish old wheel chairs free. Thus, a call to The March of Dimes brings one of these fellows with the needed transportation! The amputees would put the Couch Potato to shame. Three gentlemen wheeled up to have a huddle. One: "Let's shoot hoops." "Naw, I am heading to the miniature golf course." Another said, "Me? Tennis!" And off they rolled. One fellow operated his wheel chair with his breath. Having no hands, he breathed in to a hole at the top of the chair, and the chair and the man scampered off. The Telephone Company was there. If a person can't communicate words he looks in to this phone which has huge numbers, then takes his helmet with its pointer attached, and presses on the phone! Wallah! Four telephone operators appear! The person makes an audible sound and one operator plugs in a special computer. Another takes the "ughs" and feeds the computer to another computer. The third computer starts making sentences, paragraphs, and communication is established! A miracle for people with speech difficulties. There is another computer that requires a headset. Between "Ugh" and "Hmmm" there is a blink! The mouse is now operational and through a series of blinks, thoughts are put up on the screen, and a print-out done! Some might be upset with Bill Gates, but anyone watching this Microsoft equipment and browser at work on the convention floor... well... we should show Janet Reno, who, suffering from Parkinson herself, might think twice about bothering genius thinking! I saw forks, spoons, plates that hinge to a table easily- huge, thick, rubber pads surrounding the utensil. Mobility to eat, mobility to ride, even a portable tube of sorts for the person suffering from dementia! Gang, some people have realized that half our population is disabled in some fashion, and these people have invented things to help that half keep their "Get Up and Go." I didn't see the caregiver, the pusher of the chair, etc. They were off leading their lifestyle. In every way possible, the disabled are doing the caregiving to themselves. Looking around, I decided that this must be called The Year of The Lift... up, down, sideways, in, out of the tub, the chair, bed, the twist to the side to sweep a floor. Lifts of all kinds. The operative word here is "PULLEY." Once hooked to a pulley, a person is mobil! Up stairs, down stairs. The pulley moves up/down/sideways/tilt to the best places, including the kitchen table! I have a friend who pullied her house so that physically lifting would not be necessary. Pulley and cook by the stove. Pulley over to wash clothes. Pulley to the car. Picture it if you can. I met the agent of the fellow, Chris Burke, who was Corky on the show Life Goes On ...how a Downs child lives... well, for that matter, anyone with a semblance of a problem, like mine- epilepsy, or diabetes, heart disease, some form of celiac disease, myasthenia gravis, polio.... well, I could go on and on. Let me just tell you that my helmet fit right in! Of course, it was missing the guide stick on top for turning, pushing, etc that some use, but mine is for one purpose - protection. And there are so many others for different ailments. What I am trying to say is that The Disabled DO, Do. Open our society doors and say, "WELCOME, ABILITY 98!" One caution: When going to an Ability Convention, be prepared to have your FAX, your computer E-mail ID and whatever to pass out. Tons to pass out... I have a shopping bag of theirs. Modern world it is, it is for all. Hugs, an awed Shirl, hoping you are awed too!

Entry Forty-three: July 4, 1998

"Shazam!"

(or "Shirl needs a new computer!" -Nancy) When not thinking seizures, logging them, having them, or telling on them, I think to myself, "Shazam! Would anyone believe this?!" My doctor, who heads Neurology at the University of Southern California, plops me on a table with tons of medical equipment, (the latest) and hands me a magnet that hooks to a laptop computer and mouse, saying, "Here Shirl, wand it." We are talking medical science, medical research! We are talking three specialists, two nurses, and one company person waiting for me to WAND on my chest to beep to my electrode, to touch a neuron in the brain. Is this somethin? Is this believable? Is it true? Oh Yes! And I sit on the examining table watching, and asking, "Uh, what do you do with the laptop, keys and all, when I am not here?" (You know what I AM thinking and where this is going... grin.) The mouse starts beeping and the doctors instruct, "Rub the wand without gusto, Shirl. It's only a wand!" Gee gang, a quick tap to my chest, another to my electrode, and that GORGEOUS computer with the "Wand Shirl" program inside checks my settings, my activities, my batteries and beeps out a report from the built in printer all because I wave a wand. Gigantic medical wand? Nope a little thing to swish quickly on my chest. Little do they know... well maybe they do because they sometimes read my entries here, that Shirl is thinking, "What a computer! So compact with keyboard, printer, and all. Why don't they leave for a minute and I will rescue this poor computer that does MORE than wand." And I dream as the team records. I've even asked Sandra, the advice nurse, if she "goes online." She tells me, "You are online, wanding for us, but also going elsewhere through the Internet." Yes, I cruise the net. I www in the strangest way and I can't be trusted with that baby. Confessing now. Since Sandra said, "Oh no, we key with other computers. This is zigabyte stuff, but not THAT big of a zigabyte..." Gee now, I have a plan: I go online from home, wand from home, and ANY time they want, they can E-mail me and say, "Shirl, wand!" Heart pacemaker people do that. Can the brain be far behind? Will they leave the room so the poor laptop can be rescued... by me? And for some reason, Sandra thinks the medical equipment needs watching! They scoop up the blood pressure cuff, the cottonballs, the paper thermometer, close the study notebook and my file, leaving me alone with that wonderful machine. Oh, they take the scale too. Gee, nobody gets moony over a cottonball. Me? Ah..... that computer. They just leave it there, next to me on the examining table. Now I ask, "Why? Do I look THAT HONEST?"

Entry Forty-Four: August 10, 1998

"Backbone Blueprint"

I dedicate this entry to Patricia, who supplies the backbone glue to us all. She is so unusual in her struggle. No wonder the gang up there is having trouble building another. Patty shows us the way without lecture, etc... fighting the cause of pain in spite of her constant pain. How else does a SisterBee say, "I honor Thee!?" Hugs Shirl

Imagine, waaaay back in time, The Man Himself (or Woman), leaned over a Planning Cloud with The Gang, looked at the Specs of a Backbone and shuddered. Building a backbone for a human wouldn't be too hard, in fact, the construction would be easy; the problem was- who would fill the frame? It would take courage to have a backbone; courage to stand up for what is right and back off what is wrong! Diligence was another commodity of that backbone. If someone were ill, for example, would the person filling that backbone, have the courage, the "stick-to-itveness," the "follow-upness" that this backbone needs? As God leaned over the specs, Moses standing nearby to deliver, the Angels waiting for their flight to be cleared, I imagine, the backbone hung around waiting for completion! Part of the backbone blueprint fill in would be words, not deeds. First, the promise to oneself to fight it out and walk past the naysayers and no matter what... walk past hurt feelings, doubters, and keep doing what the specs cry out for. Then deeds make up the majority of this backbone, even tho it loves company, needs to know it will stand alone at times, and that's okay. Unrolling the papers, one last look... and the backbone is on its way. The only thing left for this backbone, is to find a home. Someone who will fill the shoes. People who won't stagger at an illness. People who give love and companionship. That's all this backbone in flight has to do... find an owner!

Entry Forty-Five: September 1, 1998

"Bory in the hospital..."

Shirl has written us a series of quick notes, sending us news and updates on Bory...

"He suffered chest pains... chest, back, jaw... and did not respond to nitro after about a half dozen, a patch and a spray." She wrote on August 19th that he was having two angios, and that she was worried about the possibility of bypass surgery again. He was taken to Anaheim Medical Center ICU.

August 20th, 8:30 A.M.: Shirl wrote before she headed over to the hospital in the morning. She talked about him being hooked up to tubes and how worried she was about him, and the possibility of him having a "major heart episode." She is worried about Patricia Fury, who is not feeling well. She wrote: "I will kiss Bory on the forehead for all of you without disturbing a tube. I just spoke with him and he is sedated now. Maybe this angiogram will tell them what they need to know... And, as you know, Bory is a celiac and lactose intolerant. I brought in his Lactaid 100, his dressing...yadi yadi... thought the hospital Diet/Nutritionist was going to smack a big kiss on me. Shucks... chose the handshake. Now that sense of humor is back, I will see you tonight. Shutting down. Hugs Shirl"

August 20th, 9:53 A.M.: "Extensive heart damage... they are looking for good arteries. More tests tomorrow. He is sending his love. Surgery is next week. We are meeting with the Doctors today at 1:00 in his room....later..'til tonight. Hugs Shirl

August 20th, 6:00 P.M.: Come Monday morning, Bory will be transported by ambulance to Kaiser Sunset in Los Angeles where they will do the Angiogram there. Then, if it shows what others have shown the day or so later Heart Surgeon jumps in, cracks the chest (we use gentler terms to Bory) slits the thigh, and arteries get borrowed again... how many? Don't know. I'll leave for a motel around the corner from Kaiser LA, like last time. He is sending his love. Off to visit him now... Have I told you all how much I think of you all...and understanding a group letter? Repeating myself brings tears... Hugs, Shirl.

August 22, 8:98 P.M.: Tat, Tat, Ratta: Oh, most people have a heart that beats along just fine with the drumbeat, "Rata Tat Tat!" So why is my title for this entry backwards? Why is Ratta out of place? Like Cardiologists, we examine that beat. Well, there is a simple answer. The heart is broken, not because of a love gone awry, but something as cold as an ARTERY! I am speaking of my husband's artery. Like a wife. And to you other spouses, daughters, sons, who have a Tat, Tat, Ratta... instead of the good ol Rat a Tat Tat... then, you know and understand. Some of our loved ones do not have hearts that beat with the drum and surgery is called for. One broken heart in the Operating Room. Another broken heart waiting in Coronary Intensive Care, waiting for good news. As the Waiting Room Broken Heart, I want to say that I will be gone for a few weeks...with the heart that needs arteries. I'll be back as soon as my hubby Bory's heart goes Rat a Tat Tat, not Tat, Tat, Ratta. Actually, I know, in thoughts, you will all be with me, sitting at the Coronary Care Waiting Room. The minute this Journal started, I knew I would never be alone again... see you in a bit! Hugs, Shirl

August 31, 12 P.M.: Home. Bory had two arteries front of heart and back of the heart found and cleaned... with STENT and balloon type angioplasty... came home Friday from Kaiser Sunset... Friday Night ER took him back to Anaheim West, where he started. One of the arteries burst and he was hemorrhaging inside, coming out everywhere. The vascular surgeon stepped in and fixed the hole. This morning he is out of intensive care and I came back for a few minutes. I wanted to check in with you. Yes, it is serious, but better than the other day. The bleeding has stopped internally. Scared? You betcha. Anyway, now he is in room 209, bed two, out of ICU for awhile. WOW... Still dripping blood outside by the incision. He was given extra blood. His spirits are higher today and mine are better too. Gosh, I hope in the next few days the wound closes... anyway..back to hospital I go... Worried about Patty, too. Hugs and Love, Shirl. Save my place.

September 1, 11:45 P.M.: The appetite is back! It is Tuesday night and I'm home for awhile. What a close call we had - with the burst artery by the thigh, internal bleeding, swelling, the works! Bory is now getting solid food! The all liquid diet after the second surgery is now gone. Bory is looking at those fake eggs, scrambled, drinking juice, and and saying, "mmmmmmm good!" and wiggling his toes. The bleeding has let up now... He is still getting blood, but can now dangle the foot... the one that they thought they may have to cut off a few days ago due to lack of circulation. So it is, as the vascular surgeon praises, "I saved the man, I saved the leg!" Friends, it was close. So I came home to talk to you for a bit and then go to sleep. Soon, Bory will be Rat a Tat Tat, and you know what that means... maybe home in a few more days, with a visiting nurse to rebandage the thigh. I also must tell you- the 911 people were wonderful. We are becoming family! They plopped me, a non-driver, in the front of the fire truck ambulance. I will report in again soon. ....so seizure, or burst artery, or angina pain... let's never take each other for granted. I am praying real hard for Patricia at a Youngstown, Ohio Hospital...the remission seems over. Hugs, Shirl, who rec'd a kind note from Patty's hubby Darryl. He knows we are all family keeping tabs on each other. Soon I will be Bory's nurse, cook...uh....uh....I can do it! oy vey mama mia.

September 12th: Shirl, what's the update?

September 19: Shirl has been writing short updates letting us know that Bory is still experiencing seeping and that the nurse comes to change dressing daily. He is eating small meals and we are now calling Shirl, "Shirl Crocker." She has indicated that her cooking imagination is being taxed. His visits to the doctor show that he is progressing well though, and we pray that all continues smoothly. Hurry and get well, Bory!

Entry Forty-Six: September 10, 1998

"Break a Leg"

I thought that my throwing about a slang expression was over. Using Loony Bin as a tool had committed me to saying and writing exactly what I mean. After all, I reasoned awhile back Gang, there are certainly enough ABC's to stroll thru! Anyway, to begin and not digress (I will look up digress in a bit... ) Five years ago, my first neurologists, Dr. C. Kim, and Dr. Chaya of Kaiser Lakeview, Anaheim... they were the ones who had double steered me to try the Vagus Nerve Stimulator at USC..better known now as the Brain Pacemaker. Those fellows said, "Run to DeGiorgio! Look at the wires, the carburetor, the magnet, the 6 year battery... and think 'implantment' under your collar bone. A wire sliced into the neck. Think, Shirl." So, I slithered back into research with Dr DeGiorgio of The University of Southern California Neurology/Neurosurgery. And as you all know, all sits in my chest, cutting back quite a few seizures. But my story is better... I was in the Kaiser/Lakeview Hospital Lobby while my hubby was getting his medication, and I bumped into Dr. Chai and Dr. Kim! After the hugs, a shout, "SHIRL, we at Kaiser are doing our FIRST vagus nerve stimulating device THURSDAY!" It is now also in the Kaiser system. It will reach, as lessons go on, tons of people...Parkinson, MS. and Epilepsy. Dr. Kim told me this on Tuesday afternoon. I'm so happy to know research was paying off to mass of people.....boque! I picked up the phone and called Dr. Chai and Dr. Kim's Service and told the gal, "Denise... TELL THEM SHIRL SAYS, "BREAK A LEG THURSDAY!" A gasp from Denise as she took the message. Later I began to think... Dr. Chai originally from China. Dr. Kim, Korea. And even though this was a loooooong time ago... I reasoned to myself... perhaps... here it comes, gang... perhaps they don't know that "Break a Leg" is a cheer? Now I begin to worry, and called Denise back at Kaiser and said, "Uh, Denise, scratch "break a leg" and write, "Go For It!" "Go for it?" she asked. "Yep, with the very first being done at a HMO... Cheer, Cheer, Cheer... Go for it!" Denise argued, "Shirl, break a leg is good." I argued, "Maybe 'Break a leg' in Korea or China is not a 'Go for it' or an 'I am thinking of you' or 'Good luck' expression. So Denise wrote it all down and sent. But this entry is to remind you all what I often forget. Stupid me... there is English and there is ENGLISH. Some sayings don't match. One would think that "looney bin" would have taught me something??? A vigil, boys and girls... it's a bloody vigil. And soon, the patient will be aok!

Entry Forty-Seven: September 28, 1998

"I See Nothing..."

So, like the old stories of those monkeys... "See No Evil, Hear No Evil, Speak No Evil," some people just don't get it: The Disability. ...Because they can't SEE it! Out comes the snicker. No cane, no lift, no wheel chair, and yet I, Shirl Rapport, indeed, am very much Disabled! My Physical ailment is up with my neurons...the seizing ones! I have Epilepsy, and during a non-seizure time (and I have those) you would never know... until I crash into you. Under my collar bone is an implant called a Vagus Nerve Stimulator Device, with one 6 year battery, one electrode, and one magnet. And as I have written before, Cyberonics designed this chum of mine to lessen seizures. Every 1.8 minutes, 24 hours a day, my device, my system turns on automatically, exchanges a few words with other neurons, tightens my chords for 45 seconds...and Wallah... Meet Shirl, fighting the unseen battle of Discrimination. And people, believe me, where the brain is involved (and what isn't?) the confusion over MENTAL begins. We casually hear, "Mental Case," "Mentally Deficient," "slow," and all the yadi yadi that goes with this. I imagine, that during a seizure, I look awful. My body (not to mention the head) does not take kindly to being jerked all over the place. Even during smaller seizures, (Temporal Lobe, Petit-Mal ... and I have them all, even with meds and the implant) I look a mess. Flash to heart, kidney, liver, broken nose... other problems, at time of acting up you don't look so hot either... naw naw naw naw! Bad or chronic health problems seems to put us all in the same boat of fighting off bad attitudes. A person who breaks a leg, sticks out the casted thing and says, "sign for posterity!" A neuron, or a bunch, just sit up in the brain dying their slow death. What a pity. At one time, that dying neuron was a whiff of a steak? a wink at a spouse, a memory of sorts. But no one wants to sign an EEG. The last time I was rolled in to a CatScan, I thought of how great it was, amongst the millions of brain cells, the beam would find THAT one. For me, the beam wasn't strong enough. But I did learn that no matter where imaging went, up there, it found thinking, feelings beating in my heart, concern for fellow man... and my disability! OK....Now, cause I am stubborn... making a path on my forehead for you to sign. Deal?

Entry Forty-Eight: October, 1998

"All Aboard..."

Shirl, while falling in love with a title, cried out for help. So here I am, stepping in to share my thoughts about Shirl and her "All Aboard" title. I see Shirl steering the mighty engine, riding as a passenger, collecting tickets, announcing the upcoming stops, shoveling coal... trying it all! I see her riding the rails as one rides through life, experiencing all that our journey lays out in front of us. Sometimes an observer, often the key player, always in the scene. As with most of us, I don't think Shirl has control of the speed or the many detours, but she has had the grand ability to identify and share many points of interest. She is her own tour guide; she is the engineer who keeps a journal for others who will pass over these same tracks; she is the verbal photographer who charts the landscape and helps move fallen objects off the course. Shirl, the train is taking you through life, down tracks you never dreamed existed. Some tracks have been smooth, others have been real bumpy and bendy. You've derailed a few times but gotten back up and chugged along. Sometimes the view was spectacular and you invited others to experience it from your window. Other times it felt like you were the only person who was seeing through the clouds and fog. But during those times, you sent a few post cards (e-mail) and eventually they reached those people who couldn't see or refused to see. Post cards, you know, can end up anywhere. You never know who is going to be sitting by you on a train... they come and go, some make a difference in your life... Even the view from the caboose is interesting, so quite often, you go there and look back. It is funny how far back you can see.... Thank you, Shirl, for the observations, sights and enlightenment. -Nancy

Back Again... - We All took a little break but good news, we are back. Below are a few words from Shirl before the holidays. Stay tuned for more. Happy 1999! Nancy

Entry Forty-Nine: January 1999

"A Talk with California"

Awhile back... about two years ago, I confessed to myself that in my case, I was disabled. It took me years to accept that fact. With all my falls and breaks, I always said, "It happens." Well, with me, it kept happening, and happening. If you go back to the beginning of this Journal, DENIAL and WISHFUL thinking are strong. As you know, I had developed a warmth for the State of California, fighting to pass my State Life Insurance exam (3 times) then my Security exam, to prove that I could blab off Dollar Cost Averaging in my sleep. I finally walked away from those passed licenses, realizing, this was not for me. Minus a car and not able to enter a Brokerage House in those days... without worry of which body part would stay put! The cost of maintaining those licences became an expensive ego trip for me. BUT, I do remember my talks with the State. Afew years ago I had a sad talk. "Yes, California, I am Disabled." I qualified for State Disability Income and a blessing called CalOptima - my health plan. There is something to be said about admiting that, and for a long time I wouldn't utter the words because "You see, I am going to get better." My day of reckoning came slowly until, in a final blurt, I said to California, "I am disabled." Then gang, I added all the disclaimers that I associated with Disabled. I still think, feel, and can add 2 & 2. My brain is functioning! Oh, somehow I had mixed up Disabled with Mental Difficulties and although my sick neurons were up THERE, the brain was intact. Can any of you believe how I condemned myself? Anyway, I reported this to the State of California, and an Anna said, "You will get help, Mrs. Rapport!" The word "aid" had come to mean so many bad things that it never occured to me not to be ashamed. It was thru my Case Worker that I came to understand that there is Aid and then there is Aid. I have almost become idiotic if someone in the medical or drug profession says, "I don't take CalOptima to fill your medical need." I call (yes, you guessed) the State and like a Cop report the happening, usually starting off with "Ann, guess what?" Also, thru this journal, I am now publicly saying, "Anna, State of California, CalOptima, Medicare, Medicaid... THANKYOU so much! Where would I be without you?" Thus, the need to say "Thankyou" from this disabled woman. You help make it better. Hugs

Entry Fifty: February 1999

"I Remember Zilch"

So often, someone will look at me and see a black and blue mark here, a stitch mark there, and ask if I feel pain. Honestly, before and during a seizure, there is no pain! Afterwards, "Ouch!" One day last month, I remember Bory and I talking about going to the supermarket. Next, I found my self sitting on my bedroom floor. I called out, "B O R Y!" a few times and then remembered, "Oh the store... He went for milk." I then began to wonder what I was doing on the floor. Little by little it came back... "Yes, I was going to stay home... felt tired. And besides the store," I sat and reasoned, "Bory needed the Library... a few stops, so I stayed home. Logical.

It wasn't til then that I realized I was bleeding, and wondered what I was doing on the floor! "Why, for God's sake, was I covering the floor and me, with blood? Oh well... this was not a concern yet. First, get off the floor! Pulling another chair toward me for balance, I systematically used knees to crawl to a standing position, taking my blood with me to the dresser, then the night stand. I eyed the telephone..."Oh good, the numbers 911 were there." Hauling myself up to the bed, memory coming back, I yelled, "Oh No, seizure!" On the bed, I lay very very still for awhile, thinking that the bleeding had to stop, then at some point, I got myself to the bathroom to wash up. I looked in the mirror and felt disgusted with myself. I had dirtied up the sink, my shirt, the floor, the carpet, my slacks... The NERVE of me, I had walked into something during seizure, and drats, had cut my head open...

I was still in the "How could I?" phase, laying very still, when Bory came home. "Helloooo!" He walked in and looked at what has now become so familiar. "ER, here we come. You need stitches!" he sayed. Pleading begins: "Don't call 911... the car, please the car! 911 brings on the fire department, the police, the ambulance AND the neighbors!" So, slowly walking and hanging on to Bory, off we go to the Emergency Room. My records retrieved, a doctor begins stitching. And that's it. Bory brings me a washcloth, a terrific washcloth, and I wipe away my cheeks and neck, still wondering "How? How did I do this?"

Gang, just imagine from here... with all that crap all over... no pain. And I don't remember zilch. Ahhhh, but the next day at home, as my knee and head lump up in color, there is pain indeed. And ice packs. The works. After three days of ooooing and ahhhing I can bring myself to look at all the parts of the house I have poured on... still wondering and wondering. THAT is pain. I report it to Dr. DeGiorgio who says I still have uncontrolled Epilepsy, and seize.

Nothing has changed... not my seizure pattern, after 48 years, not my meds helping not one iota.... and me still asking why. So here I am reporting. I am a pain in the butt. You all know that by now. But during seizure? No Pain. Afterwards? Send the cleanup crew. Hugs, Shirl, sharing the best and the worst of times.

Hugs,

This ends my old journal. I hope you enjoyed reading it as much as I enjoyed writing it. It was fun and painful to recount all these thoughts.