December 23, 2009
October 21, 2009
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.
July 13, 2009
July 9, 2009
“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.
and then when they go buy the book there will be a place to enter a special promo
code. The code for this is PEARL and the promotion will run through the month of
July." Seems like a good deal... double click the post's title and it will take you straight to the site to buy the book.
June 24, 2009
May 8, 2009
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?
May 7, 2009
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...
May 1, 2009
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.
April 15, 2009
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?
March 28, 2009
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.
March 25, 2009
March 17, 2009
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.
March 9, 2009
March 7, 2009
When I think of Louisiana, I admit that my mind wanders to thoughts of chain gangs and brutality, to folksy wisdom and the KKK. Somewhere in all that thinking I consider cajun culture and music, red beans and rice, and swamps, bayous and 'gators. What I don't think of is innovation.
at-home services will become alternatives to institutions and group homes. "It allows for that choice that was
missing in congregate life," [Donna]Breaux said. "It's a way for people to maintain independence but at the
same time have support." In the past, colonies for the disabled have inexorably morphed into prisons, thus making moot any idea of independence. I think Ms. Breaux is woefully under-informed or deluded by "it can't happen here" thinking..
As hard as we have all worked for social rights, for Independent Living and for in-home consideration, the return to "colony life" is a distinct step backwards. The notion that the disabled, housed out in the swamps of rural Louisiana, would be welcomed and subsequently well-cared for, leaves me breathless with horror.
March 2, 2009
March 1, 2009
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.
February 25, 2009
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 - March 26th http://www.purpleday.org |
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
Founder/Chief Executive - Matthew's Friends
January 28, 2009
January 23, 2009
Still, if I feel like this, how do others feel about me when they know I have E. It is a question that should be asked, not for self-pitying reasons, but in order to get a better handle on the ways people percieve epilepsy and those of us who are disordered by it.
January 15, 2009
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.
Our Seizure Nightmare
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.
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.
January 6, 2009
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.