Munchausen by Internet

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:

1. the posts consistently duplicate material in other posts, in books, or on health-related websites;
2. the characteristics of the supposed illness emerge as caricatures;
3. near-fatal bouts of illness alternate with miraculous recoveries;
4. claims are fantastic, contradicted by subsequent posts, or flatly disproved;
5. there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;
6. there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.

References:

Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672
Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausen
by proxy. Western Journal of Medicine, 168, 537-539
Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley & Sons

Invisible Illness Bingo by Anna Ham

DOUBLE CLICK ON THE BINGO CARD TO ENLARGE IT FOR READING...

How Heavy is Hair?

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?

When I was a girl of eight, about 1960, my Mama went to see a neurologist about me. She patiently explained to this demigod about my epilepsy and about the seizures I had. She also told him that I often had seizures when she brushed my hair. She explained that I had shoulder-length red hair, and that I could not reach to brush it myself, so she did it nearly every morning.

"Hmmmmm", said the demigod. He seemed very interested in my hair. In his most serious and convincing tone of voice he said "I see the problem--- her hair is too heavy for her head. It will have to be cut off and kept short, if you want to relieve her seizures. The weight of the hair is creating too much pressure on your daughter's head and it is causing her to seize."

Mama thanked the man and returned home. She had been very impressed with the way he assessed the situation without even seeing me.

She went to a drawer in the bathroom and got out her scissors. She waited for me to come home. She called me into the kitchen told me what the doctor told her, and then, like lightening, moved in for the first snip.

"Well", she said looking at one of my braids that had fallen to the floor, "we can't leave it like that!" so she snipped off the other braid. Then, she ran a comb through my hair and cooed that it would be much easier for me to take care of now... Over the next fifteen minutes, she trimmed and fussed and played with my hair until she finally handed me a mirror and pronounced that she had given me a "Pixie cut".

I was 25 years old before I let my hair grow out again.

Because a doctor had said it was the way to control my seizures, I firmly believed that long hair would cause me to have more seizures, so in spite of my adult defiance, I began preparing, waiting for the next seizures to strike.

Today, my hair is down the middle of my back. Still naturally red, although I am waiting for it to turn gray. But I cannot help wondering what Mama was thinking when she listened to the doctor who said my hair was too heavy for my head?

You Know You Have E. When…

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...

My Blighted Life... BADD Contribution 2009

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 common comment I hear from within our community comes in the form of a question: Can you inherit epilepsy?

Until recently, I had not fitted the pieces of

the puzzle for this question together. When one

asks if the source of E. is hereditary, what one

seems to really be asking is whether or not it can

be "caught" by one's progeny from a parent.

If one considers the question more deeply,

one can begin to see a connection between the medical model

and fundamental eugenics philosophy: in each case, it is the disabled individual who is the problem and it is her

disability we are anxious to cure. Either by medicalized re-mediation or via genetic exclusion. Something they feel needs to be redirected or reshaped for a better future, I suppose.

Rather than seeing society as placing obstacles in the path of the disabled' participation and inclusion,

those who still hang on to these outmoded explanations continue to segregate all of society into an

us versus them reality.

Many of us are at least vaguely aware of Professor Singer, the Australian professor who has come close to equating

disabled children with the concept of the "useless eater". Singer's support for euthanizing disabled babies could lead to disabled older children and adults being valued less as well. When Peter Singer attempted to speak during a lecture at Saarbrucken he was interrupted by a group of protesters including advocates for the handicapped.

He offered the protesters the opportunity to explain why he should not be allowed to speak. The protesters indicated that they believed he was opposed to all rights for the handicapped. They were unaware that, although he believed that some lives were so blighted from the beginning that their parents may decide their lives are not worth living; in other cases, once the decision is made to keep them alive, everything that could be done to improve the quality of their life should, to Singer's mind, be done.

So is this the same thing as feeling an intrinsic value for all human beings or is Dr. Singer thinking of a social redirection??

Yet, via Singer's utilitarian approach, he does seem to leave open the door to the possibility that

society can and should look to the future and make every effort to reshape that future.

But what do we do about the ordinary folks who have a distinct fear of our numbers increasing?

Take for example the case of the mother in Britain who wanted her daughter's sex organs removed to prevent

her going through the discomfort of menstruation--- I don't believe this to be the real "interest". What I believe, no matter

how immaterial, is that the mother had grown more and more anxious over the notion of unwanted pregnancy than

anything else...

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.

The Day I Drowned at Tin Can Beach, California

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?

The Best for Last?

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.

Epileptics, Please!

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"... 

This is a kind of self identification that hedges one's bets, don't you think? Most of us know that if epilepsy comes into your life, epilepsy will remain in your life. Sure, it can remit... you can go for really long periods without it, but quite often, it will return with a vengeance. 

Those of you who feel you have either overcome E. or that you have outgrown it still need to see a doctor once in awhile. You need to keep an eye out for it's return... At last report, there has been no cure for epilepsy presented. Even surgery only promises minimal results for some people. 

Stop taking half-way measures! Stop shoving epilepsy to the back of your consciousness. E. can be dangerous, particularly if it catches you off guard. Be smart, be safe---go all the way out of the closet and admit having epilepsy.

You don't have to lie, you can let folks know that your E. has gone into remission and that you are not having seizures presently. It is probably a really good thing to let others know that this happens to us, that we are sometimes free of seizures for long periods of time. Some of us are even able to go off our meds when that happens. But, we are never free of E., neither are we cured of it... we must always use our awareness to see if it is coming back.

If it seems like it is coming back, we need our docs and our meds all over again, until the next remission.

One in one hundred people have E. and they need to hear from the rest of us that it is OK to say so. They need to know that there are others of us talking about it, writing about it, etc. and that we can offer advice and let them know they are not alone with this disorder. 

So, stop telling others you "used to have epilepsy"--- wake up to the notion that you still have epilepsy! You are not cured of E.--- but you may well be in remission from it! 

Had Enough of E., Yet?

            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. 

Epilepsy and A View of the Self...

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. 

To the right is a painting by Evelyn de Morgan. I love her work and like to include it because of the themes she enjoyed painting. This painting, "Luna" comes close to what I think of myself. Ethereal, healthy, protected, redheaded. No trace of E. visible!

Still, one has to account for the damage E. has done to one's psyche and so another painting below and to the left is a kind of grim example of how I feel having E., at least at times. Not always, just sometimes.

Often, I feel as though I have burdened my family, my friends and I am fearful I will burden strangers with my condition, as well. It makes me feel estranged from humanity, even freakish, and so the second, contrasting illustration is a kind of visual description of those feelings.

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.

I know that many folks have a sense that E. somehow makes those of us with it degraded in some way. As if we are less because of it. As if we have been polluted by some evil.

There are others who  use the presence of E. as a means of acting violently against the individual with it. Parents who beat their children to cure them of E. are not uncommon. 

And many of us know how it feels to be refused housing or employment once our condition has been revealed. 

Some of this is fear... Some of this is cruelty, to be sure. Some of this kind of behavior is learned cultural response. E. has been around as long as there have been humans, so there has been plenty of time for people to develop a cultural reaction to its presence. 

But no matter what one's experiences have been, one must learn to cultivate a different self image. I like the self image of "Luna" and I cultivate it, and as I grow stronger, I am more and more able to affect others toward 

creating a better self image to go along with a stronger interior life. Then, the face I present to the world becomes stronger and better able to live in our world, even though I know there are still many who feel negatively toward my condition. 

I will not allow them to express that toward me. It has to stop somewhere.

Life, Death and the Long Haul with E.

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.

Protecting "Normal"...

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. 

Lighting the Way???

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)

Sure. All of us want to participate to save the planet, to go green, to reduce our footprints on earth. Still,

I am not alone when I suggest that this is a bad solution for many of us. Gee---I have trouble sitting in a 

classroom with fluorescent lighting, so I am really gonna have troubles with living 24/7 with it, compact or not.

It may be necessary to contact Health and Human Services and protest against a kind of forced situation that 

may aggravate our conditions as well as the conditions of other disabled.

I know throwing over incandescent light bulbs seems like a good idea, but one simply can't unilaterally decide 

without taking into consideration the needs of others who must live among the 300,000,000 

that populate our country. 

Remember, one in fifty of us has epilepsy and our population alone will be poorly served by this decision. 

But there are others who suffer from exposure to this kind of lighting, and so to force it on us is simply cruel.

A better strategy might be to rethink how we will proceed, to see if another way exists that might be healthier 

for all of us.

Who Will Help Represent US?

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. 

One of the things I know we need is a human face. If we are going to engender support for Epilepsy research and awareness, we will need a very public person to stand out and up on our behalf. 

I think we should collectively make a list of persons we think might make excellent spokespersons for us at a national level.  Someone with E. would be best, I think, but I could be wrong...

1.  Bill Clinton

2.  Neil Young

3.  George Clooney

4.  Senator John McCain

5.  Greg Grunberg

6.  Oprah Winfrey

OK---I have run dry of ideas, but if you can suggest some others, I will add them in. So far on the list, the only person with E. is Neil Young. 

Have A Thrilling Halloween!

Halloween, Jack O'Lantern Looking in Window

The Lamictal Skin Rash...

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. 

I have recently found a photo that is of a woman with this rash, and I have included information on what this rash is.

Here's hoping it helps some of you!!!

Lamitical is a drug used to control seizures. In a small number of people, LAMICTAL causes a serious skin rash. In these cases, the person must be treated at a hospital; rarely, deaths have been reported. Serious skin rashes are most likely to occur within the first 8 weeks of treatment with LAMICTAL, although people taking LAMICTAL for several months have also been affected.

Erythema nodosum is often associated with systemic diseases such as tuberculosis and rheumatic fever. Tender, bright red, slightly elevated nodules develop along the shins. Erythema multiforme can have a number of causes, including viral and bacterial infection, chronic disease of the visceral organs, or allergic reactions to drugs. In Stevens Johnson Syndrome, a person has blistering of mucous membranes, typically in the mouth, eyes, and vagina, and patchy areas of rash. In toxic epidermal necrolysis, there is a similar blistering of mucous membranes. However, in addition to blistering, the entire epidermis peels off in sheets from large areas of the body. Both disorders can be life threatening.

Stevens Johnson Syndrome Symptoms & Treatment

Stevens Johnson Syndrome and toxic epidermal necrolysis usually begin with fever, headache, cough, and body aches, which may last from 1 to 14 days. Then a flat red rash breaks out on the face and trunk, often spreading later to the rest of the body in an irregular pattern. The areas of rash enlarge and spread, often forming blisters in their center. The skin of the blisters is very loose and easy to rub off.

In toxic epidermal necrolysis, large areas of skin peel off easily. In many people, 30% or more of the body surface peels away. The skin loss in toxic epidermal necrolysis is similar to a severe burn and is equally life threatening. Huge amounts of fluids and salts can seep from the large raw, damaged areas. A person who has this disorder is very susceptible to infection at the sites of damaged, exposed tissues; such infections are the most common cause of death in people with this disorder.

The affected areas of skin are painful, and the patient feels ill with chills and fever.The hair and nails sometimes fall out.

Blisters break out on the mucous membranes lining the mouth, throat, anus, genitals, and eyes. The damage to the lining of the mouth makes eating difficult, and closing the mouth may be painful, so the person may drool.
Ocular involvement includes severe conjunctivis, iritis, palpebral edema, conjunctival and corneal blisters and erosions, and corneal perforation. The eyes may become very painful, swell, and become so filled with pus that they seal shut. The corneas can become scarred and there may be loss of vision.

Esophageal strictures may occur when extensive involvement of the esophagus exists. Mucosal shedding in the tracheobronchial tree may lead to respiratory failure. Mucosal pseudomembrane formation may lead to mucosal scarring and loss of function of the involved organ system.

The urethra may also be affected, making urination difficult and painful. Vaginal stenosis and penile scarring have been reported. Renal complications are rare.

Sometimes the mucous membranes of the digestive and respiratory tracts are involved, resulting in diarrhea and difficulty breathing. 

Lamitical is a drug used to control seizures. In a small number of people, LAMICTAL causes a serious skin rash. In these cases, the person must be treated at a hospital; rarely, deaths have been reported. Serious skin rashes are most likely to occur within the first 8 weeks of treatment with LAMICTAL, although people taking LAMICTAL for several months have also been affected.

The best advice is to keep an eye on your skin and notice if it changes or becomes reddened and itchy. If you have questions, see your doctor. This is something they will want to know about, so be persistent with them.

I've been taking Lamictal over a year now and have had no effects at all. The drug does seem to be working against my seizures, though, and I am currently happy with the protection it has offered me. 

Wishing you seizure free days ahead!

Self-Hating Epileptics...

This is a subject I know something about, so indulge me, if you please.

When I began to write about epilepsy, I had a terrible struggle within myself. I wanted to do a good job and I wanted to bring us all closer together as a community, but I also wanted to try to get past my own self-hating

as an epileptic. I know I am not alone in this, that there are many of us out there who hate the epileptic parts of ourselves.

I hate the pity, I hate the seizing, I hate taking the drugs. I hate the feeling that at any moment I may lose control and make a spectacle of myself or that I will wake up with strangers staring down at me. I hate the whole nightmarish quality of epilepsy and though it seems terrible to say, I don't want to see someone else's seizure, either.

I hate the superstition the surrounds us. I hate the ignorant doctors who know less about my condition than I do and I hate feeling that each time I seize it might be my last time.

I think the quality of an "unknown" end to my life disturbs me the most. 

And, the notion that I am some kind of untouchable in society has always bothered me. That has been one impetus for writing my blog, certainly. Because we are neither untouchable, nor contagious to others.

I hate the depression, the clumsiness, the unsteadiness that both the seizure activity brings and the drugs to treat the seizures bring. I am tired of breaking things, crashing into things, etc.

I just had a seizure the other night and so if I sound a little depressive while I write this it is probably because I am... Don't I just hate that too! I mean really!

I can't drive, I don't swim, won't skydive... How much more of a drip could I be???

I lived through the '60's and didn't do drugs, never explored hallucinogenics, didn't get high. Had enough of my own experiences not to want to induce more of them, I guess.

I am bright, capable, and a fairly good writer. This satisfies me. And, I am a grad student, which makes me really happy... But I hate my epilepsy because it makes my brain inconsistent and unreliable. 

Will I get over it???

Tune in next week and find out, boys and girls!

Blog Carnival #45: The Future

What does the Future hold for us? What will it be like for folks with E.? 

Do we dare dream of a future for ourselves or have we been taught, on some psychological level, to believe that there is no such thing for ones such as ourselves. I say, dare to dream forward!

I think finding meds that can work without disrupting our lives with impossible side-effects could be nice, and a goal for Big Pharma  to strive toward. 

But, how about simpler, smaller things: Indian writes about marriage and suggests a traditional means for achieving bliss in his piece. Since over half of all epileptics do not enjoy marriage or long-term relationships, it might be worth a shot to seek out Vedic help in this arena, so check out: 5 Marriage Compatibility Essentials.

 

It may work better than E-Harmony promises to...

Chaoticidealism writes a little off-topic, but a fascinating piece "The Einstein Fallacy" which addresses the notion of looking backwards, into the lives of the famous and trying to divine if they do or do not share a malady with which you are familiar, in this case autism. 

She writes that lives of the famous or genius are not predictors of an individual's abilities or potentials and cannot be read as such. 

If we extend this into the future, we cannot predict whether or not knowing the infirmities of others will have any value to our own lots in life. 

I agree. I submit that we can only learn what they did and learn something about how they handled the stress of being disabled.

Bill Darling at Coral and Opal writes about the future in terms of the Vancouver Olympics. He points to an accessibility discrepancy at the Beijing Olympics at the Canada House location that threatened to make Vancouver Mayor Bill Sullivan's visit nearly impossible. He describes the Mayor as one of the most high profile wheel chair users in Canada, and talks about how officials had to scramble to make the Canada House accessible to him for his visit.

The upshot seems to be that accessibility is an implicit right that we all hope will be corrected in the future. 

Wheeling Woman offers her Thoughts On Suicide ... 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.

I suppose the thing that fascinates me with these posts, so far, is the notion that we don't seem to express long-range notions of a Future for ourselves. It isn't a criticism, just an observation.

Simon, writing from Ultra-Light Wheelchairs, writes to discuss Beauty and Women in Wheelchairs. Simon is already in the Future. He discusses fashion and female achievements and in support of his male accolades, I have juxtaposed a photo of Michelle Colvard, 2009 Ms. Wheelchair America. Beautiful, certainly!

Grace Young OT   writes about a Brighter Future, and I have to say I can agree with both her premises: 1) the Graying of America and 2) the return of war veterans to civilian life.  Read her piece and be uplifted by her logic and her elegance!

Along those lines is Dean Moyer who offers us information on the health of one's back.  There are treatments that seems to offer relief, and Dean points out both the benefits and the risks. There is hope for the future for people suffering with lower back pain and radiculopathy. This is part four in the series on Sciatica and Epidural Injections and this time we examine the different risks and potential side effects associated with corticosteroid injections for the treatment of pinched nerves. The bottom line is the risks are small and the benefits make this procedure well worth considering.

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...

The most perplexing entry was submitted by artist, Jordan Rhoat. He seeks our help and asks that we sign a petition on his behalf. I'd do it, if I were us.

Penny Richards has graciously passed along a piece by Jeff McNair--- a fascinating, though-provoking piece titled Beginning Traditions at Disabled Christianity. Read the entry. It asks question of folks of good will and fellowship. It wonders aloud about the place of disabled folks at church or within congregations. I really found the piece uplifting in an odd kind of way... and it does address the social Future, for sure.

Finally, Erin at School Psychologist Blog Files talks about the distinctions between two kinds of classifications for the disabled child in school. As children our the Future incarnate, her piece is worth a read...

When I think of Future, I consider a time when Epilepsy and persons with it, will live out loud, and not silent and apart from the rest of us. I know that community makes all of us stronger---look how we have all benefited when we have allowed ourselves to identify with the disabled community! 

We have our distinct histories, needs and complaints--- but we share the need and the right to be fully enfranchised citizens of the nation to which we belong. Here is where our Future lies, I am sure, at the juncture of what is most personal and what is most public. 

Thanks to all those who sent me submissions and any of you who come lately will also be dealt with... 

Ivan, has sent us Off to the Future.  

We cannot know what it will bring us, but we can hope it will bring us punctuality... according to Ivan and others, Blogcarnival has not been working well, so Ivan and the following two were unable to make the deadline on time. So, we will still include them, eh?  

Dark Angel offers Tiimes They Are A Changin' .

Abigail Perry writes about something close to my heart and offers a solution: Overdrafting Whiners.

For those of us with deficits in money management, like me, her solutions and her care are evident. Banks should ask her for advice, but if they did they might lose money each quarter...

Thanks to everyone, late or not, for supporting my there and contributing to this my first carnival... Community does matter and I am happy to count myself among you all...

Writing: What Are We Trying To Say?

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?

Could it be that we are attempting to work out our feelings of isolation through the stuff we put to paper? Are we trying to work up the courage to self-identify as epileptics to a broader world?

I don't know for sure. But I suspect that for many of us, each of these are possibilities. Then too there is the notion that we may be trying to convince ourselves and others of our intelligence. After all, there are many folks out there who believe E. has to do with a lowered I.Q.---being capable of putting our thoughts down on paper is both comforting and proof that we are intelligent individuals, certainly.

Some of us migrate from writing at home to writing at some school. Many of us find an outlet and a reader or two among the nest of academics we make ourselves comfortable among. The experience of having someone besides the immediate family read something you have written can be a heady one because you feel you are receiving something valuable from their reactions. It can be enough to encourage your continued efforts at writing.

I know it has helped me tune up my prose.

It has also allowed me to become less fearful of writing on this subject of E...  In fact, one of the strangest and best encounters I could have experienced happened at school. I nominated an individual for an appreciation award as an Outstanding Person, and she won one of the awards. I had to get up and make a small speech about her relationship to me and why she was outstanding.

At the end of the evening, a young woman came up to me and explained she was the mother of a child with E. and that she was happy I had spoken of my own E. because, she said, she now had a better idea what her own daughter could achieve. 

Can you imagine that! Someone called me a roll model!!!

I am still on Cloud 9 when I think back on it...

 I think achievement is important to us as a community. I think education is one way of reaching out. Sometimes, when we write about our conditions, our experiences with E., it bridges gaps and makes us feel more comfortable with ourselves and others.

The best thing I have taken away from my college experiences have been a renewed sense of socialization: a feeling that I do belong among others, that I am as talented as they are, that I am as worthy as they are.

It's a feeling like no other because it affords me a strong sense of empowerment.