There is a part of me that has not grown up. Evidenced, I think, by my personal love of Halloween. To me it is the perfect holiday. In some ways, better than Christmas, Halloween carries with it a musty sense of ancient times. It makes me think about all the various ways we have tried to control our epileptic expressions: first by magic, then by prayer, then by drugs and potients, and surgery, and today with biometric devices.
Many of us regularly engage with our community via emails, listservs and chat rooms. If you are like me, you proceed on the assumption that those you are in contact with share the same condtion. After all, why would anyone lie about that! Still, it is important for all of us to be aware that there are some folks who, for their own very deep seated reasons, fake symptoms and tell us stories to belong. Marc D. Feldman is a prominent American psychiatrist who has written extensively on the problem Munchausen's disease. Since many of us participate with online communities and chat room, I thought it might be interesting to read some of what the good doctor has to say on the subject. You never know when it might come in handy... So, with permission, I have taken the liberty of lifting a couple of passages Dr. Feldman wrote on the subject. I have included references at the end, and, if you double click the title of this post, it will take you to the page online from which the material was gleaned.For decades, physicians have known about so-called factitious disorder, better known in its severe form as Munchausen syndrome (Feldman & Ford, 1995). Here, people willfully fake or produce illness to command attention, obtain lenience, act out anger, or control others. Though feeling well, they may bound into hospitals, crying out or clutching their chests with dramatic flair. Once admitted, they send the staff on one medical goose chase after another. If suspicions are raised or the ruse is uncovered, they quickly move on to a new hospital, town, state, or in the worst cases — country. Like traveling performers, they simply play their role again. I coined the terms "virtual factitious disorder" (Feldman, Bibby, & Crites, 1998) and "Munchausen by Internet" (Feldman, 2000) to refer to people who simplify this "real-life" process by carrying out their deceptions online. Instead of seeking care at numerous hospitals, they gain new audiences merely by clicking from one support group to another. Under the guise of illness, they can also join multiple groups simultaneously. Using different names and accounts, they can even sign on to one group as a stricken patient, his frantic mother, and his distraught son all to make the ruse utterly convincing.
Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factititous Internet claims. The most important follow:
I just finished reading Peripheral View. I have to say that to my surprise there were some really accurate portrayals of characters and their feelings about persons with epilepsy. This is not an apology for those feelings, but rather a solid statement of ways in which folks still carry around out-of-date information about our disorder.
“My Aunt Lucille had a severe case of epilepsy; it began when she was a child in the 1950’s. Drugs for the disease weren’t what they are today, and she was placed in nursing homes and group homes as an adult. She spent her entire adult life in these places. As a child, I was afraid of her or tried to ignore her— looking at her with a peripheral view—, but as an adult, I volunteered at the place she lived and got to know her. While I was embarrassed by her, she grabbed onto my hand and announced to everyone she could that I was her niece. That alone deeply touched my heart. I learned that she had the same feelings as any of us, that she was embarrassed by the helmet she wore to keep from hurting herself during seizures, and most importantly, that she had found someone special. She wanted out of the institution, to marry him--to have love, family, and her own home. A caseworker, and my sister Roxann Dunst, helped her become independent and fulfill her dreams. Those peripheral views, and Aunt Lucille capturing my heart the way she did, was the inspiration for Peripheral View.”
The novel is 328 pages, paperback, and just the right size for taking along when one has waiting to do. I was uncertain about the book when I began reading, but the story became so compelling to me that I found I could not put it down until I had finished reading it. I would recommend it as a solid pick for summer reading.
How much can a head of hair weigh? Is it enough to cause your neck from being able to hold your head up straight? I have heard that hair can weigh from .5 to 3.0 ounces an inch--- how heavy is that, really?
Illness personal narratives are, by their nature, sad, grim tales told by sufferers. Being around those who suffer can be nearly as unbearable as the actual suffering itself. Even reading about suffering can take its toll. So, in an effort to keep the dialogue going about E. without causing my readers to suffer too deeply, I offer a glimpse into one of the human being’s best coping strategies: humor.
Do people with E. have a sense of humor about themselves? Yes. Do we use it to give ourselves a break from our own illness experiences? Absolutely.
Humor specific to a topic or activity, it relates to experiences we share through E. and it offers the same value all humor offers: insight.
You know you have epilepsy when there are two cars in the driveway and you don’t drive.
You know you have E. when...someone asks you if you're alright & you didn't know anything was wrong.
You know you have epilepsy when you find yourself eating lunch for the second time in a row.
You know you have epilepsy when your dentist worries about losing his fingers...
You know you have epilepsy when you can decipher the following: I was dx'd with JME by my epi with an EEG, (had MRI and CT), Rx was Lamictal 100 mg p.o. tid, which controlled the jerks, absence, SP's, atonics, and GTC's...
You know you have epilepsy when holy water burns you.
You know you have epilepsy when your roommate doesn't know whether to call 911 or a Priest.
You know you have epilepsy when your Meds cost more than you make in a month.
You know you have epilepsy when you take meds to help the meds you take.
You know you have epilepsy when upon having a burst of energy you're asked "are you having a episode?"
You know you have epilepsy when...you have a seizure in your sleep and smack your spouse...and they ask ...was that a spell or are you still mad at me ?
You know you have epilepsy when...Sleeping till 3:00 pm is normal...yet not sleeping at all is too.
You know you have epilepsy when you hear ten times a day from your loved ones…did you remember your "pills"
You know you have epilepsy when your significant other pats himself on the back for his prowess that night and you have no recollection for the event...
As we step into the brave new world of the 21st century, some notions from the 20th century still linger. One of those notions, eugenics, has to do with the "self direction of human evolution".
A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.
But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a "disturbing precedent."
Andy Rickell, executive director of disability charity Scope, told the Press Association: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.
"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.
"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."
How do we feel about disabled sex and reproduction? As a society, there are those who have strong feelings against disabled sex and reproduction. I know as a woman with E., I was warned all my life that I would never be able to have children and that I should never have children.
To my mind, the warning could have been more distinctly articulated: something more like: don't have children unless you can care for them, unless you are married or have employment or the like. The same kinds of warnings parents make to their non disabled kids.
Certainly, I have taken this piece a little far afield, but I guess my point is still a simple one: I am happy to be alive and I don't want to be engineered out of existence, by anyone.
If the day ever comes when someone wants to know whether to let me die "with dignity" or continue living my "blighted life", what I "would want for myself" is to be left alive--- I must say that I am, under no circumstances, in favor of euthanasia, nor would I ever sign a DNR for myself. Too many people have been too anxious for too long to get rid of us to ever let me see "mercy killing" as an option.
I plan to live to be at least 112 years of age, blight and all.
I shouldn’t be telling you this--- I don’t mean it’s a secret, I just mean, I shouldn’t even be here. The summer after I had just turned five years old, I drowned in the ocean and was saved by my uncle Don.
When I was little, summer meant bundling up towels, blankets, bottles of Sea and Ski, Noxzema, lawn chairs and telescoping forks, hot dogs, buns, mustard, relish, marshmallows, pots of chili with mushrooms, and a giant metal tin of saltines. We never owned a cooler of any kind, so the afternoon before our seasonal trip, Mama would go from house to house, neighbor to neighbor, in search of a Coleman’s cooler or a five-gallon thermos-like thing for lemonade to borrow for our trip.
Mama’s lemonade was good for keeping mosquitoes away when we stayed in the city. Hot summer evenings outdoors were fun, but the next morning my sisters and I always looked a little like we’d been pin cushioned--- unless we managed to spill enough of the sticky beverage on our legs and arms to keep the bugs away. At the beach, however, lemonade was not a good choice for a beverage because instead of keeping bugs away or killing the bugs that happened to get on you, the sticky drink made sand cling to you in all the wrong places. It made life uncomfortable.
Every summer, we begged for Hawaiian Punch. It seemed like a much better choice because it was pre-mixed. After every vote, we lost, in large part because lemons were free and readily available, everyone had sugar, and there was always lots of water from the tap, no matter who’s house you made the lemonade at. Hawaiian Punch, on the other hand, had to be gotten from the market, and at 49 cents a bottle, it was just too much of an extravagance.
Mama would try to get us interested in some adventure we could claim for ourselves, like shell collecting or such. The best was catching sand crabs, and Mama suggested that we should find a suitable tin can on the beach in which to capture them. No need for individual pails, that way. Besides, we didn’t have any.
So, like other years, this is how the trip to Tin Can Beach began. After a week of planning, map reading and arguing about the best route to take, the cars would be loaded, food prepared, and trunks packed for the trip. It took a couple of hours to get from our house in the San Gabriel Valley to Huntington Beach and then to the best beach itself, just south of the pier--- Tin Can Beach.
The caravan set out from our house at six in the morning. We arrived by ten, and were done setting up by noon. Including aunts, uncles, cousins and spouses, there were about twenty-five of us.
Mama slathered Sea and Ski all over me and then told me to play as much as I could under the rented umbrellas. By late afternoon, my Aunt Fern and her husband, Ward, had their long bamboo poles out and were casting lines out into the surf. Others were throwing and catching a ball, some were making sand castles, and a few of us were hunting down tin cans for the sand crab hunt.
On the highway side of the beach was a huge berm, an earthen embankment created in part to scrape away some of the debris and junk on the beach itself. There, at the foot of the berm, we hunted tin cans. But, as was the case in 1957, one had to be careful hunting tin cans because the lids of the cans were sharp as razor blades and jagged as broken glass, so a cut from one could ruin any day at the beach.
I found my tin can early. An old Del Monte Sliced Peaches label still stuck to it. I also found a metal spoon in the sand left behind by someone on some other day, so I was equipped and ready to take on the water and the sand.
I moved from the berm to the edge of the water and waited for the surf to roll in and out a couple of times. I sat down on the wet sand and scanned its smoothness for bubbles. I didn't think I would have much time to hunt for sand crabs because I was already beginning to burn painfully at my shoulders and the ties of my sun-suit were beginning to cut into my skin.
I recall digging into the sand, scooping it with my fingers and feeling for the sand crab. I recall having about half a can of sand and crabs. Then the tide came in, knocked me over and all I can recall was a deep blackness and a claustrophobic nausea that was suddenly shattered by one of my uncles. I woke up, hanging upside down, midair, my uncle waving my little body in the wind as if he were trying to dry me off. It was his version of CPR.
I had been underwater, seizing, and the tide was beginning to pull me out to sea. My uncle had been afraid I had drowned, because I was as pale as a ghost and a little bluish around my lips. He only became relieved when he saw the circulation return and my lips "pinked up". After he set me down, the world began to spin and I heaved up seawater and oatmeal all over the sand. Then I seized again, so they released my sand crabs, packed up their things, and drove me home.
They didn’t know it back then, but the early hours, the heat, and even the excitement had all contributed to antagonizing my epilepsy. I often wonder if the experience repeats itself when I have a convulsion, because the feelings I have are like being under water and not being able to breathe, and the sensation I have is like water moving over my face, so that even when I open my eyes I am still unsure if I am back among the living.
Perhaps the event imprinted itself on my memory somehow?
I have never been able to outrun one specific memory of my childhood.
In 1959, Mother took me to St. Luke’s Hospital to have my epilepsy tested. We arrived in the morning, sat together for three hours, and then followed a Nursing Sister along a complicated set of corridors and wrought iron and marble staircases.
We descended. Deeper and deeper into the bowels of the hospital we walked, until, at the end of the tour, we came to a cramped little space marked “E.E.G. Lab”.
The technician and my mother seemed to get on well. They chatted for a long while. Finally, the technician began a longer process of gluing electrodes to my scalp. It was not unlike getting a Toni, the home permanent for little girls.
At the end of this very long process, I was exhausted and my nerves were running high. I had a pain about the size of an apple in the middle of my stomach and I wasn’t sure what came next.
Next, the technician had me lie on a cot and she told me to close my eyes and see if I could fall asleep. She quit talking with my mother, and suddenly everything was quiet. I began to drift off and finally went to sleep.The technician waved something under my nose to wake me.
Apparently, I had drifted very deeply asleep and she wanted me back, awake, in a hurry.
The smell went straight to my brain and did the trick.
Next, she lowered a lamp over my head and told me to stare directly into the center of the bulb, without blinking or closing my eyes. When she turned it on, it began to strobe slowly. She made a second adjustment to the lamp and it picked up the pace of the strobing considerably. I thought my head was going to cave in, until she said I could shut and cover my eyes.
She adjusted the lamp back to its most comfortable setting, and then she directed that I should pant like a dog and watch the light. I was supposed to pant for three minutes, looking into the light all the while.
About 20 seconds into the panting, I tried to stop. The technician told me that if I stopped, she would tell my mother that I could no longer watch television, as a consequence.
After the panting-like-a-dog sequence was finished, she asked me to lie quietly. She took the lamp away, and darkened the room. Some time passed, and we were finished. She took the electrodes out of my hair and she warned my mother not to try to use a brush on it because it would need to be washed out with a special shampoo. She gave my mother the shampoo and we left.
I thought we were done for the day, but no. Mother had a surprise for me : a blood test.
We walked down one more flight of stairs into a laboratory. A nun in full habit greeted us. She slipped into a smallish apron and sleeves and tied a rubber hose around my arm. Mother slipped away. I felt awful. Just as the nun slipped the needle into my arm, I vomited all over her. Then I seized.
When we finally arrived home that night, Mother told me she would never do that again, and I made the same promise back to her.
I pray for the soul of that nun often. I have insisted to God that it just slipped out.
To date, God has never brought it up, but I think extra time has been added to my stay in Purgatory for Defacing a Habited Nun.
MEDICAL MATTERS: if you suffer from epileptic seizures, St Patrick’s your only man, writes MUIRIS HOUSTON THE INTERNATIONAL image of St Patrick’s Day is more about leprechauns, green beer and cabbage and corn beef than early Irish Christianity. And while the myths associated with St Patrick do not have a particularly medical flavour, in general saints have been linked with diseases and cures through the centuries. St Patrick has been mentioned as someone to pray to if you have epilepsy. Tradition has it that a person with epilepsy who slept on “leaba Pharaic” on Caher Island off the Mayo coast could be cured. 
Since coming out as epileptic, I cannot count the numbers of persons who have come to me quietly to say they "used to have epilepsy" but that they "grew out of it"...
I have been doing E. since I was 3 years old. I have been taking medications for at least that long. The auras, the convulsions, the unsteadiness, the memory problems, the weird dreams or no dreams, the chewed up mouth and tongue, the incontinence, have all left me wanting out.
Then, when it remits, and I don’t have seizures for a long stretch, I think “Oh good! It’s finally gone!”… Well, not really, because it comes roaring back. And during the time it is in remission, I begin to anticipate it’s return.
I have to say, I hate all of it! I have had enough of it!
But, so what! It is with me for the rest of my life. So, I work on it, I work on the feelings I have about it. I try my best to settle down and realize that I could be much worse off…
I hear and read comments from others, on other blogs, in other chat rooms, folks with E. who are fed up and want to take some decisive action to convince themselves they are don with E. and everything about it. I hear folks say they are just gonna quit their meds. Or, that they are gonna quit seeing the docs. Believe me, I really understand this, but, unfortunately
This is not the way it works.
The consequences to stopping meds can be a return of seizures. If you stop seeing the docs, you will lose the continuity of care they provide you.
Try something new: see a psychologist that deals with disability adjustment or behavior. This might be helpful. You will have to be prepared to teach the doc all you know about your condition, because they are not well schooled in our disorder, but it can help. They can help you get past the fear and despair perhaps.
In the end, each of us knows we have to deal with E. We cannot escape it once we have it. But, we can work against it the best ways we know how.
I'm thinking of organizing a party or some other kind of event. This date gives us yet another date to work for awareness, so we should take it!!!
| GLOBAL AWARENESS OF EPILEPSY |
Purple Day was started in 2008 by a nine year old girl called Cassidy Megan who comes from Nova Scotia, Canada and she has epilepsy. She started Purple Day to dispel myths and the stigma attached to epilepsy. She wants to let everyone know that there are different degrees of epilepsy and it affects different people in different ways. She wants everyone to know that people with epilepsy are the same as everyone else, just ordinary people. Cassidy wants to let other children with epilepsy know that they are not alone. Epilepsy affects over 50 million people worldwide. Cassidy wanted to have a day where the whole world could think about epilepsy and that is now 26th March. And why the colour purple? Lavender is the international colour for epilepsy. At Matthew's Friends we were so impressed with her story and her courage that we just had to get involved and we are VERY proud to be the UK Partners for Purple Day. An 8 year old boy was the inspiration behind Matthew's Friends and now a 9 year old girl is going to make sure that the world knows about epilepsy and we want to help her do this. If everyone can wear purple on the 26th March EVERY YEAR, then the word will spread about epilepsy and we want to get people talking. Cassidy encourages people to hold fundraising events or parties on Purple Day, by whichever means you want. It is not only about fundraising, it is about raising awareness. PLEASE SUPPORT CASSIDY Take Care Emma Williams Founder/Chief Executive - Matthew's Friends |
Valentine's Trivia about Flowers and Chocolates Will and Guy invite visitors to write one of these quotations in the Valentine card they send this year: Old aunts used to come up to me at weddings, poking me in the ribs and cackling, telling me, 'you're next.' They stopped after I started doing the same thing to them at funerals.
California produces 60 percent of American roses, but the vast number sold on Valentine's Day in the United States are imported, mostly from South America.
Quotes for Your Valentine's Day Cards
How to stop people from bugging you about getting married
Greetings... I am in such a mood because Valentine's Day is coming! The color, the candy, the flirtatiousness... dizzyingly delightful. But is that all?
I know that when I think of myself, I usually try to leave out epilepsy. I know it is a part of me, but I prefer to think of myself in more expansive ways that leave out the invisible marring epilepsy has left behind in me.
In light of the heartbreaking death of Jett Travolta due to a seizure, PARADE magazine president and CURE Board member Randy Siegel voices his sympathy for the Travolta family in his Chicago Tribune editorial, “Our Seizure Nightmare.” Randy also takes issue with the media’s recent coverage of the tragedy and of epilepsy—a misunderstood disease that affects more than three million Americans, including his daughter. Please read Randy’s editorial below, and feel free to forward it to friends, family, and coworkers. The media also wasted an opportunity to educate our country about the relationship between seizures and epilepsy, a devastating neurological disease characterized by abnormal brain activity and recurring seizures, which affects 1 out of every 100 people. That's 3 million Americans and 50 million men, women and children worldwide—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. While some people with epilepsy can lead normal lives and are able to achieve seizure control thanks to effective drugs or brain surgery, most patients do not and suffer debilitating side effects from all the seizures and medications. Uncontrolled seizures wreak havoc on the brain, causing depression, developmental delays and even death. An estimated 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy, and other seizure-related causes such as drowning. That's more funerals from epilepsy than those caused by other terrible diseases such as breast cancer, nearly 140 per day. In this era of medical breakthroughs, doctors and researchers still struggle to understand what causes seizures. In two-thirds of patients with epilepsy, the cause is never known. Many children with autism also suffer from epilepsy. Thousands of U.S. soldiers are developing epilepsy after suffering traumatic brain injuries on the battlefields of Iraq and Afghanistan. Despite these numbers and all the lives at stake, epilepsy research is woefully underfunded and the search for a cure has been stymied. Living with seizures is cruel and unusual punishment for patients and their families, no matter how old they are or how famous they might be. One never knows when the next seizure will strike and whether it will be damaging or even fatal. And for a parent, it is especially heartbreaking. Our 12-year-old daughter has epilepsy and averages about 1,000 seizures a year. Every night, when we tuck Becca into bed, we hope and pray she will awake the following morning and that one day our nightmare will be over and a cure will have been discovered—for her sake and others, and in honor of those who were not so fortunate. Randolph Siegel is president and publisher of Parade Publications and a member of the board of CURE, Citizens United for Research in Epilepsy.
Our Seizure Nightmare
By
Published in the January 13, 2009 Chicago Tribune
As a media executive and father of a child whose life has been derailed by uncontrolled seizures, I watched the Jett Travolta tragedy unfold with particular sadness. The Travolta family deserved much better from the media, especially those invasive and sensationalistic TV shows, Web sites and magazines whose feeding frenzy was nothing short of despicable. Yes, even movie stars deserve a zone of privacy when they are in mourning.
To the right is a painting by Evelyn de Morgan from 1916. It is her commentary of Death on the battlefield. Double-click the image to see it enlarged...
Experience with E. tells us that we should consider the recent death of Jett Travolta a tragedy… However, that same experience suggests that we have lost something more than a fellow sufferer.
There is little in the way of a “public face” for epilepsy. John and Kelly Travolta could do much for our community by simply admitting to epilepsy, rather than hiding from it. I confess, I am not a doctor, and I am not an epileptologist to be sure, but I do have decades of experience with this disorder.
We all know that several of our AEDs are used for multiple reasons beyond seizure control. We also know that seizures can come from other conditions, including heart problems. So, it would be unjust to simply act as if we know better about the Travolta death.
Still, the information is provocative and suggestive of an epilepsy disorder. So, the only conclusion any of us should reach is that we are hearing the absolute truth from the news reports or that there is a greater reason for the family to resist saying the word out loud.
Bigotry still exists in a pronounced fashion when it comes to E. Discrimination and stigma are elements each of us live with, and these things produce in all of us a “selective” kind of revelation of our disorder to the outside world.
I am of the hope that at some time the Travolta’s will acquiesce and offer whatever support they can give to our community. Preferably, a public acknowledgement of E. in their family, because it would help all of us.
It would encourage donations, it would encourage research, it would encourage others to speak out about epilepsy. I could help end the stigma, the discrimination, and the bigotry we live with.
Still, the family has to make their own decisions, come to their own resolve, and they should be afforded their own time to grieve without supposition or criticism.
Epilepsy kills. It can be a dangerous, deadly condition. Take your meds, see your doctors, and live the best way you can. Like you, I am in this struggle for the long haul.
Some things are odd and one encounters them in strange ways. For example, a friend of mine with E. who still drives was arrested a couple of weeks ago. The charge was not her driving, although the cop who stopped her said he did not like her lane change.
Politically correct (PC) speech is interesting to examine. Like I suggested in my first posting, I prefer not to use it about myself. In my opinion, PC speech is irrelevant to my own experience as an epileptic.
A couple of nights ago I attended an Epilepsy Month panel and at the end of the panel discussion there was time for a question and answer period. A young man stood up and began to speak, but the first few words out of his mouth were “I am an epileptic” so one of the panelists stopped him in front of everyone to chide him about his use of the word “epileptic”.
I wasn’t very happy about it. So, it made me think…
What are we really doing with PC language, anyway? Doesn’t our word-choice reflect on our experience as a disabled person? Don’t we have a right to choose how we will self-identify, without fear of recrimination from anyone? I think so.
A blogger friend of mine insists on employing “language amnesty” toward one another of us involved in a cross-disability dialogue. I think “language amnesty” is a good policy across the board. I think before we decide that an individual’s word-choice for self-identification is wrong or harsh or unacceptable, we need to pause and allow the person the room to express his or her own experience via his term for himself.
I know I spend a lot of time on language issues, but to me, if we cannot effectively communicate, then we have lost all power and all hope of being able to defend our lives as disabled folk.
On February 20, 2007, Australia announced that it would phase out the sale of the incandescent light bulbs (that we use nowadays) by 2010 and replace them with CFL (compact fluorescent light) bulbs.
Two months after Australia's announcement, the Canadian government announced that it too would phase out sales of incandescents by 2012.
On December 19, 2007, USA also announced that it will phase out incandescent bulbs by 2014.
In fact, President Bush signed an energy bill that will make the production or sale of the incandescent bulbs illegal after the phase-out period, which means people will be forced to buy the CFLs whether they like it or not.
The European Union announced in March 2007 that it plans to cut carbon emissions by 20 percent by 2020. Part of this cut will be achieved by replacing incandescent bulbs with compact fluorescents. Over the next 10 years, China, which makes 70 percent of the world's light bulbs, has agreed to phase out incandescent bulbs in favor of CFLs (www.myproductalert.com/cfl-compact-fluorescent-light.html)
Yeah, Clinton's correct. There is also no urgency in funding even though people die from Epilepsy more frequently than they do from AIDS each year in the United States.
It's that time of year again when we should all consider making others aware of Epilepsy.
Some of us take a single AED for our condition. Others of us take more than a single drug. Many of us have been warned about the serious side effects possible from our drugs and there is one drug that seems to have the wildest side effect: Lamictal has the potential to cause a deadly skin rash.
The rash is referred to as Stevens Johnson Syndrome.
Although I received this warning when I began taking Lamictal, I found it was difficult to find photos of what the rash looked like. I wanted to see it so that if it began happening to me, I would know when to rush off to the hospital.
This is a subject I know something about, so indulge me, if you please.
What does the Future hold for us? What will it be like for folks with E.?
... She seems to be saying that while contemplating her own extinction, she is also contemplating her future. Astrid has written a touching piece on her own views of the Future: No More Future. In it, she dares to consider her own death. Her blog, Astrid's Journal, is everything a blog should be---it is beautifully written and breathtakingly personal, honest. I am wishing Astrid a long life and an uncommon Future and am in hopes she will be with us for many more years.
Ettina at AbnormanDiversity writes a fascinating bit about Demand Avoidance and new ways of deriving meaning and social improvement, not just for these autistic ones, but for other ones as well. If, in the Future, we were to take lessons from ourselves and insist the able-bodied word function in the same manner, we might improve life inside and out of the classroom for all of us. I liked this one particularly well...
Over the years, I have been fascinated by the numbers of persons with E. who write. Historically, many of my favorite authors were persons with E... But, I wonder what we are all trying to say?
What do you think of when you think of E.?
There is a feature of disability that has to do with body integrity and ownership. For many of us, it stems from the multiplicity of medical tests and exams we experience over a lifetime that leave us feeling much like a slab of meat. It is a kind of medical victimization, if you will. It is, certainly for many, a traumatic experience
Reflecting on her own experience as the survivor of violent sexual assault, and drawing upon the narratives of holocaust survivors, ... [Brison] interweaves a phenomenological description of the sense of loss of self experienced by survivors of trauma, with philosophical analysis of different conceptions of selfhood-the self as body, the self as constituted by memory, the narrative conception of selfhood, and the autonomous self. The experience of loss of self, she contends, affects all these modalities of selfhood, showing the importance of each. Brison's account of self-recovery also brings out the inherent relationality of these modalities of selfhood-if others can violate a person's sense of bodily integrity and can radically undermine her sense of self, it is yet only through others prepared to listen to her narrative that the survivor of trauma can re-make herself.Brison's essay should be read as reflective analysis, rather than as an argument for a particular thesis, according to Catriona MacKenzie, McQuarrie University.
When one begins to consider the track of her life, one can only come back to a single question: how can I become equal to the task that is, that will forever be, my life? I know when I was young, it seemed unfathomable to me how one would know how to do things correctly, successfully, as an adult. For instance, how would one get money to pay bills or buy food? I did not quite comprehend the connection between working and money. I knew people worked "for their living", certainly, but just how did that work translate into living. The notion of growing up was really frightening to me.
I believe that Death rides in a carriage drawn by six matched horses. He rides from behind the Moon in the night sky and we can see him coming because he leaves a trail of mist behind him.
I also believe that we cannot evade Death, but that some of us are Death’s Familiars.
Growing up, I was suspected of being magical and of demon possession by one grandmother, and of being angelic by another. I am someplace in-between and mortal.
I craved the Church and later came to it. I am blessed by my relationship to it and call the saints, friends. When I was younger, they travelled with me on long and short journeys.
I live in the hope that they will each remember me if I descend into the oblivion of seizure and am unable to climb out of it.
I believe in amulets and charms, spells and prayers. Perhaps I am a heretic, but I believe that the imperfections of my faith have already been absolved as they are a part of my Epilepsy.
I have left temporal lobe E. and it makes one curious about the mystical elements of life and Death. As a teen, I would lie awake at night with the window open and hold my eyes open in case Jesus Descended to talk with me. Feeling that I had already suffered much, I felt we would have much in common. He never came to me directly.
But a black cat did show up, sat on the patio outside my bedroom window and waited for me to speak. I said nothing, and so he waited. Finally, the sun came up and he left.
There are far more serious answers and meditations that should be given to this question, but I am too timid to offer them here. When one begins to talk about, think about or write about Death, dying and the like, others can become overly concerned and for people with E., it can be a double concern because many of the drugs we take can cause "suicidal thinking". So, I am compelled to add that I am writing about Death as a participant in the Carnival and not as an outgrowth of some drug-induced ideation...
All I can really offer is that I believe in a metaphysical world and feel myself a part of it at all times.
For those of you who think that I am suggesting a link between mysticism and TLE, let me make clear that there seems to be one---the 5 symptoms together are called Geschwind Syndrome and this symphony of elements is supposed to outline many TLE epileptics, particularly of the left side, accurately.
But, docs haven't made their minds up about Geschwind's Syndrome... Here is what D.F. Benson has recently written on the subject:
Department of Neurology, UCLA School of Medicine 90024.
A characteristic personality syndrome consisting of circumstantially (excessive verbal output, stickiness, hypergraphia), altered sexuality (usually hyposexuality), and intensified mental life (deepened cognitive and emotional responses) is present in some epilepsy patients. For identification, the term "Geschwind syndrome" has been suggested as a name for this group of behavioral phenomena. Support for, and criticism against, the existence of this syndrome as a specific personality disorder has produced more fire than substance, but the presence of an unsettled, ongoing controversy has been acknowledged. At present, the strongest support stems from the many clinicians who have described and attempted to manage seizure patients with these personality features. Carefully directed studies are needed to confirm or deny that the Geschwind syndrome represents a specific epilepsy/psychiatric disorder
So, when I write that I have considered suicide ever since I was a child or that I talk incessantly or that I am mystically and religiously inclined, etc. you can see it may have an epileptic origin. Not because of the the drugs, but from the etiology of the E. itself.
When a chronically ill person crosses over into disability, I believe that Parson's Sick Role Theory can no longer apply.
Sean, at transabled.org, gives a really good description of disability hierarchy. I am reprinting it here:
What do I mean by "hierarchy"? Simple, there seems to be a belief that some types of disabilities are better than others. Quads are better than paras, paras are better than amputees, etc. It seems at times that only certain disabilities are "acceptable". Wheelchair users are at the top (and that fact is pretty obvious with the International Symbol of Access (ISA), a stylised wheelchair user...
The above piece depicts a Fourth of July parade in a small New England town and is by American primitive folk artist Jane Wooster Scott. Originally from Philadelphia, Scott moved West to California to "get into show business". The turning point in her artist's career was when she had a joint showing with actor Jonathan Winters at the Ankrum Gallery in Los Angeles. Scott is known as one of America's most highly reproduced artists and her themes are American of the early 20Th century... 
I have the pleasure of glimpsing the flow of readers to my site because I added Site Meter some weeks back. I would like to extend to each of you my personal "Welcome" and "Thank-you" for taking the time to read my posts and look at the art.
I have noticed recently that the attributions of diseases and disorders for many famous people are shifting. Vincent Van Gogh, for example, has long been considered epileptic, but recently, has been decreed bi-polar instead. The symptoms are the same, but the designation has been changed.
Persons with E. are hampered by Fear. But for many epileptics, Fear isn't just Fear, it is a paralyzing state of Anxiety that is difficult to analyze and articulate for most of us. The co joined states of Fear and High Anxiety can create just the right conditions to bring about seizures, and at just the times none of us want them to occur!
Motivational advice can be useful, sometimes. For me, the inspiration it brings seems to vanish in the throes of both Anxiety & Fear, so it feels useless, something I am unable to hold onto in a crisis.
(CBS) A Port St. Lucie, Fla., mother is outraged and considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.
Melissa Barton says Morningside Elementary teacher Wendy Portillo had her son's classmates say what they didn't like about 5-year-old Alex. She says the teacher then had the students vote, and voted Alex, who is being evaluated for Asperger's syndrome -- an autism spectrum disorder -- out of the class by a 14-2 margin.
When we visit the doctor, we expect to be treated well and to be given professional attention. When this does not happen, most of us feel alienated. Since we need the help of doctors to maintain our condition, it is important for each of us to take responsibility when something goes wrong.
I want to take a running stab at an explanation for the persistant stigma associated with E...
There is a grand new book by Sadi Ranson-Polizzotti titled The Bedside, Bathtub & Armchair Companion to Lewis Carroll --- however, while writing and researching the book, Sadi encountered stiff resistance from other Carroll scholars against the notion of Carroll's epilepsy. The resistance is wholly their own, because Carroll freely admitted to it in his diaries. He was diagnosed with it formally and learned to cope with it.
So why the resistance to it today???
According to David Rothman's review,
Epilepsy: The real origins of the creative bizarreness
Carroll, it turns out, suffered from epilepsy, and Sadi says that shaped his imagination and led to surrealistic passages in his works—and maybe even in part to the birth of surrealism itself, for Carroll was surrealistic before the word existed. Think of that next time you read, say, of Alice falling down a rabbit hole or shrinking to three inches or growing to nine feet.
In other words, rather than slapping all kinds of Freudian explanations and tags on Carroll, a biographer might do better to search The Reverent’s diaries for his unwitting descriptions of the disease. Sadi says her work is the first book not to gloss over the epilepsy. In Carroll’s days, epilepsy bore enough of a stigma to discourage doctors from making such a diagnosis despite the obvious signs in his diaries such as the headaches and particular kinds of hallucinations.
I have not read the book yet, but based on Sadi’s lively and literate writings published here, I’d recommend you consider buying it if you’re an Alice fan.
Sadi has mentioned the resistance by others when it comes to identification of Carroll as a person with E. A relative of his makes a similar remark about him, related to his photographic endeavors:I have lived my life with this association and I have never known exactly how to react to people’s views on Dodgson. On the one hand is the whimsy and delight of the Alice stories. But to others, there is a darkness about Dodgson’s subject matter for his photography. As an aside, there is precious little discussion of his significant contribution to mathematics.It is important to note that in Victorian times, E. was considered a blight on a person which cast into doubt the quality of the individual--- it made questionable the moral standards of the individual, to be certain. Lewis Carroll's moral reputation was perhaps darkened by the fact of his epilepsy, and it seems as if that stigmatic darkness has pursued him to the present day.From my own research, Dodgson’s photographic techniques were groundbreaking and the appropriateness or otherwise of his subject matter is simply a matter of opinion.
For what it is worth, Alice Liddell’s family seemed to have an opinion that it was not appropriate and thus succeeded in planting an element of innuendo into the interpretation of Dodgson’s behaviour. This seems more a reflection on Victorian morality rather than anything else.
It is important to keep in mind that it was during Victorian times that the medical community believed epilepsy (or at least some forms of epilepsy) were caused by too much sexual stimulation and it was Dr. Issac Baker Brown, surgeon, who advocated and practiced both male and female circumcision as a mode of treatment for epileptics, to lessen seizures.
The connection between sexual practice and epilepsy was a strong one in Carroll's day.
However, it is important to note, just as Sadi Ranson-Politzzotti has done, that the epilepsy was a huge contributing element to Carroll's genius.
I heartily and sincerely second David Rothman's suggestion that you purchase this book!!! It will provide new insight to your own condition as well as to the author so many of us cherish.
For ordering information, go to the following link: http://www.tower.com/details/details.cfm?wapi=111710568
To read more about this from Sadi's own blog:
http://tantmieux.squarespace.com/lewis-carroll/From Sadi's site, you can learn more about how to purchase a personalized copy for your home library, or as a gift!!!
And, just so you know, Sadi is a fellow TLE---let's support her good work and insight by purchasing her book!!!
Once upon a time, as the story goes, a group of mice became so frightened of a cat that all they could do was huddle together. They did not seek food, they did not go into the house for warmth. They huddled and began to complain: "The cat creeps up on us and attacks us and we never hear him coming!"
When is my best, good enough? I comply, I take the tests, the pills and the insults from the medical establishment, the public, even family...
According to Orrin Devinsky and B. Vasquez in Behavioral Changes Associated with Epilepsy,
Coming out as a person with E. has it's problems... In the first place, E. is invisible-in the second place, E. has been so highly stigmatized for so many centuries that coming out can present real problems for those of us to choose to do so. Finally, self-identification as "disabled" is often ignored or suspected by others, even from within the "disability community" to which many of us want to belong.
Back in the day I had a doctor who would not give me a Rx for my seizure control medication. said I had to prove I needed it. Hello. I went maybe two or three months with no problem and then one night had a nocturnal grandmal. Went to the doctor and opened my mouth displaying all the bite marks in the tongue and cheek and asked him could I please have my Rx now?? He said yes but he had to turn it in to the DMV. I politely told him my seizure was due to his neglect and refusal to give me my Rx and if he saw fit to turn it in to the DMV then be prepared to hire a driver for me while I could not drive. He decided giving me my Rx was all he needed to do. I told him I thought so. Yes you see doctors who talk like that but sign a release and tell him to get copies of the old tests and if they are too old then they can be repeated but if new enough it would not be necessary. If you are talking about blood levels I remember being tested every month for the first year I was on my medications. I got monthly blood tests. Kept me controlled after they got everything regulated perfectly for the next 18 years.
Driving is something most of us take for granted. It’s something we can’t wait to do. Later, it’s just part of what we do.
Driving makes your life different.
When my daughter asked me how I felt about having a driver’s license, I really didn’t have to give it much thought---then I realized something: When you walk from place to place, you gauge everything in terms of strength and endurance---your own. You get only as much stuff as you can carry. You make every ounce count. You never even think of getting stuff that’s heavier than you can jerk and carry. You never get things bigger than you are.
The first time I went to the K-Mart, I got so excited about all the great things and the great prices, I bought a truckload.
After I checked out, and pushed my cart outside to the parking lot, I realized I didn’t have a car. I had walked there. I also realized I couldn’t carry home the things I just bought.
I was mortified to have to call a neighbor to come get me---and my stuff.
Stamina and endurance are re-evaluated once you have a vehicle. The bigger the car, the more powerful the engine, the more you feel enhanced. The more you can do. The more you can buy.
So, when my daughter asked me about driving, I was quick to say that now I could go back to the K-Mart---and buy things that were too heavy for me to carry home. And some things that were bigger than me, as well.
However, driving is a serious source of contention among epileptics. There are some who feel it is a privilege, others who feel it is a right. I have read in sociological studies, that driving is a normalizing act that makes us feel socially equal, if only by having the driving license---whether or not we use it behind the wheel.
Life without a license can be full of added obstacles, of the kind you might never consider. For example, ever been turned down as a job applicant because you had no driving license? I have. I have been told that taking public transportation or depending on a ride from someone else would make me unreliable in the work place.
Ever try boarding an airplane without a driving license? Forget state-issued identification, because there are still many people who question the validity of the state I.D.---but no one questions a driving license!
If you have E. and want to drive, there are circumstances under which it is perfectly legal for you to do so. These conditions are not the same, state to state, but many of us can drive, legally.
Driving is a key to many things in life, but most especially, it can be key to the way we see ourselves as individuated parts of our society's whole.
I borrowed the title for this post from Mike C. at Epilepsy and Life. Double-click the title to read his post there. He chronicles an experience in which he is asked to participate in a study.
I used to hear it alot: a kind of playground mind game that travelled with folks my age into adulthood. It goes something like this: which would you rather lose, your eyesight or your hearing?
Negotiating your way through the world can be tricky. Probably the best advice about what to expect or even what to hope for came from my older sister, on vacation from the California State School for the Blind, when she was about eight: she told me that all we can hope for is that some people will hate us less than others.
Retards are clearly hateful to God - otherwise why would He have made them that way? In the old days of the pilgrim fathers, our ancestors knew what to do with retards. They killed them, or, if God gave them a disability that was particularly amusing, they took advantage of his bounty and made entertainment out of them.Shelley adds:
They did not pretend that retards were ‘like us’ and worship them as liberals do.
I hate to say it but Americans could learn something from Europe: How they treat their retards. They just put them away in a home, just put a straitjacket on them and feed them once a day, that’s it. Let God sort them out. If God doesn’t like it He can always make them normal!
The point I am trying to make is that retards are useless to our (or any) society. Fact is that they are damaging society to a degree that some people say we should find a final solution for them, like in the good old days.
Shelley the Republican is an example of the kind of response we fear if we reveal ourselves to others. Hers is the backwards view of our world and of the good and proper way to behave in that world. It negates any concept of love for one's neighbor, compassion for the less fortunate, etc.
But, Shelley does resurrect Hitler's notion of the "useless eaters" among us, and the need to cleanse society of us... I bet Shelley's parents are real proud of her, too. But, Shelley isn't the most recent hater...
"Anonymous is now at war with epileptics." 
Anonymous is a virtual army of griefers, anxious to invade and make in-roads into the cyber-lands of their designated opponents. A couple of weeks ago, epileptics became the targets of these hacking fools.
Okay, so who hates us more and who hates us less?
Or, is it really hate they feel toward us or have they just spied an opportunity for themselves?
There are obvious reasons persons with E. have trust issues---the longer they have E., the more complex these issues seem to become. This may be the hardest part of living with E., overall. I find I am unwilling to trust others---this springs to mind as the hardest part of E. Let me explain: I trust my husband, because he has been by my side, seen my most terrible convulsions, cleaned me up afterward, and still loves me.
But, contrast this single extension of trust and confidence I willingly extend to my husband with my responses to others in my world, those who wear titles suggesting, by social convention, they should have my trust, and the world seems a little bleak for me because these titled folks frequently seem to fail my trust.
Doctors---I have seen many of them in my lifetime and I fail to see any advantage in giving any one of them my trust. Often, this is because they seem a little hazy, or downright ignorant, about my condition. Since I understand my condition well, they become resentful, even antagonistic during the treatment process. They question whether or not I really have E. in the first place, they develop reasons for running the same tests over and over again, then they cannot decipher the results of those tests, once they have them in their hands.
The general public: these are the ones who question whether or not I am retarded, whether or not I am criminal, whether or not I am contagious. Some suggest to me that my E. stems from past-life sins of a horrific nature, or that I might benefit from an excorcism to rid me of my condition.
Drugs, surgery, alternative methods all eventually reveal something dangerous to me about the ones who want me to use their methods. For example, I have been periodically informed that chiropractic can cure my epilepsy. Yes, a few good, bone-cracking sessions with these certified quacks and I will be right as rain. No thanks.
Have I just settled into my own, comfortable cynicism or is it experience that informs my attitudes?
I say it is experience. For example, when one prevails upon the medical establishment for help, then finds the individual doctor in his office, looking up Epilepsy in his reference books, one might feel let down, perhaps just a little.
Or---let's say one seizes in the presence of a nurse, and she tries to shove her wallet between my teeth? It is apalling to me how many folks still believe this to be proper first-aid for a seizing individual!
Around the world, across cultures and through time, epilepsy has been present among the people. This has not prevented a variety of interpretations among folks on how to treat or relate to epileptics. For this reason, it is important that we speak out in favor of ratification of the United Nations Disabled Peoples' Bill of Rights.
The significance of this document for disabled who happen to live in pro-human rights nations is that it works to support any existing domestic laws. In the end, it acts as an aid, in support of the fundamental rights of all disabled:
Civil Rights in the CRPD
The right to legal capacity (to make one’s own decisions)
The right to liberty
The right to live in the community
The right to respect for physical & mental integrity
The right to freedom from torture, violent exploitation and abuse
The right to healthcare and to free and informed consent in health services
The right to education
The right to vote and to participate in public & cultural life
The right to work, and to an adequate standard of living
The right to privacy
The right to habilitation & rehabilitation
The right to receive information in accessible formats
The right to marry and to divorce, and to share equally in child custody
The right to procreate, & the right to obtain contraception
The right to sign contracts, and own and inherit property
The right to accessible public transit and public accommodations
Most of us can see, simply by reading the titles of each of these statements, that there are instances when we have discovered that other folks do not necessarily agree that we are eligible to these rights, due to our disablements.
In the United States, until very recently, laws prohibiting marriage with epileptics were on the books. But so were permissive statutes that allowed sterilization of persons with E...
In 2004, disputes erupted over proposed changes to the language of the Americans with Disabilities Act. According to a reporter, Andrew Mollison,
The decisions made it harder for people with disabilities to prove that they have disabilities, bolstered the defenses that can be used by those accused of discrimination, and limited the damages and legal costs that can be collected by those whose complaints are upheld.
That helps explain why only 35 percent of adults with disabilities have full-time or part-time jobs, the council said.
Charlotte Chenoweth, a registered nurse who analyzed medical records in Tampa, Fla., had a seizure and was diagnosed with epilepsy. Until she and her physician found the right combination of medications for reliable control of her seizures without side effects, she could not drive to work.
But Chenoweth lost her attempt to force her employer to let her work at home or to adjust her hours to coincide with the rides she could get to work. The judge ruled that Supreme Court decisions meant that since her epilepsy had been mitigated by the time her case came up, she was no longer protected by the ADA.
In fact, according to the council, Supreme Court decisions would have allowed her employer to fire her for having epilepsy, as long as the epilepsy was under control.
It is fascinating the ways epileptics have been treated by society. We have been objectified, our status as human beings has been reduced, and our value as citizens has been compromised. For this reason, ratification of the
United Nations Disabled Peoples' Bill of Rights is essential. If offers to lend support and to demonstrate the intent of nations to act in favor of the human rights of the disabled.
I am in favor of ratification. I would hope each of my readers would be as well, and that you will find a means of raising your voices in support of it, as well.
Throughout my blog, I have posted on diverse elements of the life of persons with E. Everything from guilt to trust, to the contemplation of surgery and suicide. I have posted on superstition, alternatives to AED treatments for E. and my own personal reflections about having E.
The final image below represents what comes to mind for many folks when they think about E. We are much more than this, but like our fellow disabled, we must stand for ourselves in order to erase this kind of image from the minds of others.
