E. is for Epilepsy by Paula Apodaca

The Cage

2011-05-02T00:00:00.000-07:00

Bothered by nighttime thrashing? Nocturnal activity troubling your spouse? Try the cage!

Updated from older, more institutional models,
the Cage is made from fine, hard woods with brass
hardware. It comes with a lifetime guarantee... As long as you live, the Cage will protect you from injury during those nighttime spells.

Custom fitted to your height and weight, the Cage offers you a peaceful, protected, comfortable night's sleep.

In the Czech Republic, patients are routinely housed in "caged beds" as a means of keeping them from walking around and getting under foot. Please...understand that this is a little bit of sarcasm on my part. I just get sick of the things people do to try to
"help" we disabled...

Now, back to our regularly scheduled programming...

Testimony to the IOM

2011-04-01T18:21:00.000-07:00

Very recently, I was supposed to offer testimony to the IOM. This group is looking into epilepsy and how best we can help persons with epilepsy. So, they have formed a series of meetings and have invited everyone with an oipinion to step forward and offer suggestions.

The Institute of Medicine is funded by the National Science Foundation, and might be able to assist us in some fundamental ways. Their next panel discussions are in June, Washington D.C., so anyone interested should Google them and see about attending.

Here's what I wrote to them:

There is a terrible gap in the quality of care owing to a lack of comprehension about epilepsy. The phrase “a commonly occurring

neurological disorder” frequently leads laypersons and professionals to

assume that epilepsy is not serious or dangerous to the patient. A more

refined amendment to approaches in medical school education would

benefit patients of all ages, and might make general practitioners and

neurologists more comfortable treating their patients with epilepsy.

Within the past ten years, I have been told by neurologists that “It

could be worse, at least epilepsy can’t kill you” and “Well, we’ll see if you

really have epilepsy: I will take you off all of your medications, and then if

you seize, we will know for certain”. During the same time, GP’s have

suggested that a tonic-clonic seizure has not occurred unless it is

accompanied by urination” and “It is very easy to fake epilepsy. Some of

you people do it for the attention.”

Clearly, these are physicians who are behind on their reading and

who might benefit from a specific educational approach. Initially, I would

suggest a survey into the Attitudes of Physicians toward their Patients

with Epilepsy.

Because physicians can, by their personal attitudes, enhance or

diminish stigma to epilepsy in the community and within the family, they

are also central to quality of life issues. Additionally, physicians with poor

knowledge of epilepsy often have the tendency to view this disorder

according to the germ theory model. They become easily frustrated when

they cannot fulfill their own expectations to find a cure for epilepsy; this

can breed hostility between patient and doctor.

It is also important that health insurers be more broadly introduced

to the neurological sub-specialty, epileptology. The diagnostic codes and

data used to make referral decisions for patients could be smoothed if this

category were supplied to them as a legitimate category in neurology.

So it seems that I am speaking about the need for a more intensified

educational approach, not only for the public at large, but also for the

professional population as a whole.

Treating epilepsy can be as frustrating for doctors as it is for

patients. Still, passing along bad information or resorting to cruelty is not

an answer. A cardiologist would not suggest taking a new heart patient off

his medications to see if he would have a heart attack to confirm a

diagnosis.

Perhaps one of the more ridiculous “cures” ever provided happened

when I was a child. In about 1960, my mother went to see a neurologist.

She talked about me with the doctor, describing my condition in detail. She

mentioned to him that I had long red hair and that she brushed my hair

every morning. She told him that I frequently seized during this process

and more than once, it had triggered status epilepticus. He thought about

what she told him for a moment then concluded that it was my hair that

was the problem. My hair, he told her, was too heavy for my head and

should be cut short to relieve my seizures. She cut my hair off that very afternoon.

So it seems that I am speaking about the need for a more intensified educational approach, not only for the public at large, but also for the professional population as a whole.

We have all learned a lot in the past 55 years of studying and living

with this disorder. I can hardly wait to see how much more we can change

things, together.

Seizing the Moment...

2011-04-01T16:52:00.000-07:00

This little bear suggests that we "seize the moment". No doubt, the caption was written by someone without E.,; still, it isn't bad advice. I wanted to say that I have neglected those of you who read my blog in order to focus on an effort to write a collection of short stories on the experience of epilepsy. This has meant that I could no longer siphon off my ideas into my blog postings. It has also required me to take that inward journey to see if there is really anything I can write that is meaningful or significant about experiencing epilepsy.

Today, I just couldn't resist a return. I miss the blog...

I have to say, further, that your comments have been treasured by me. I love the things you tell me, the criticisms you make and the stories you share. Some of you write only a word or two, others more, but I hope you will continue. And I promise to break away every so often to write a new posting and keep my blog as fresh as I can.

My regards and thanks to everyone who reads and follows.

Cordially,

Paula Apodaca

November is E. Awareness Month!!!

2010-11-10T11:57:00.000-08:00

From: Elizabeth McClung's "Screw Bronze" blog, without Permission.

2010-05-06T13:15:00.000-07:00

Elizabeth is a cyber friend of mine. She has written the following post and she has written a book we should all read titled "Zed". I hope you enjoy her posting as much as I did:

I live a life that no one envies. And if you have a chronic disability, you probably do too.

Was that too direct, or do you want to tell me that this was choice three: #1 – Teacher, #2 – Librarian, #3 – invisible chronic illness even your relatives don’t fully research, believe and want to understand, and living the high wire emotional act of being dependant. Really?

My life is the kind of life where doing what I want, like blogging for BADD will always come behind the intractable aspects of my illness/disability. Life’s natural joy and excitement are now something to be bartered for. And that isn’t really the way things should be.

NO ONE should be born a second class citizen, and no one, particularly while helping keep many medical supply companies/doctors/medicine makers in profit, should become one just for being disabled. Yet many are. We are.

As a society we collectively set our sights too low. We can do better.

See, we have to do better. I have to do better, to learn, understand and being there for people with different impairments/disabilities/illness’. I have to fight as I can so that the quality of life of those with disabilities, and their value within the society will be higher, for those who come after me.

I believe a fully integrated society which values the insights and full participation of those with impairments/disabilities/illness’ is a better society. But that idea is not THIS society.

The problem is us. We blog in BADD often about ‘us disabled’ versus the AB, but the problem is just ‘us’: ALL of us. We all accept too readily the systems’ failure. With 1 in 7 having impairments/disabilities we already knew before we became disabled of a friend, family member, or someone close with a disability/illness and accepted that trying NOT to go through the system is what is important. 1 in 35 get MS. You really don’t know 35 people? Not even at university, or restaurants, grocery stores, neighbors? I have three neighbors with disabilities before I leave my own apartment floor. At university I knew many women with MS and what did I do to change the discrimination I saw directed at them? Where was my DAMN EMPATHY when I saw her struggling with the foot controls of a Dictaphone and heard the head of department discussing ‘how long they would have to keep her on?’

In a JUST world, I should be serving a community sentence, being forced to learn to care, or if I am a sociopath, learn to at least help.

But then are we a society of sociopaths, narcissists or just selfish people? If you want adult PEER PRESSURE, that is what every commercial, homepage and TV show sells. It is hard to have an equal and integrated society when even being facially different brings public scorn (72% of Brits feel that Susan Boyle should never have been allowed to appear on ITV’s talent show. After winning, she was offered a role on ‘Ugly Betty’).

We, collectively need to do better. My province has put on an high bonus for every time a doctor sees a patient with a chronic disease, because so many refused to take them as patients before. So now instead of punishing them for discriminating, we reward them for seeing well…us. Perhaps none of the Doctors or Specialist in BC read the Hippocratic Oath “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” Or perhaps they never bothered to tell the doctors that they would see patients, sick people – that IS the job of doctors, to see people, well, like us. To help people….like us.

What should been done in North America and in other countries is to raise the bar of acceptable standard of behavior for doctors. If a doctor ignores the main source of information (the patient), belittles them, assumes they are lying, assumes they are lazy, assumes because they are female it is: trauma, PTSD, depression, hormones, or ‘in her head’ – a complaint should be taken as seriously as a physical complaint. Because the ignoring of her, and her condition, the delay in treatment for her chronic illness IS a form of delayed physical treatment and well being – as harmful as an assault. They DID harm, and they should, since they seem incapable of having the morals to hold to their oaths, be held accountable. Often, sadly, the entire medical system can be a form of abusive emotional, physical and psychological assault.

I have yet to be able to take a MRI, CAT scan, or any other table test, including radiation injection testing on a table where I able not fully reclined on my back, often unable to talk and breath. Not the rarest of conditions, just one two entire HOSPITALS don’t bother about.

We (society) need to do better.

Having a near 80% unemployment rate for those with disabilities surveyed when the general population is 4-8% isn’t sad, it is an open declaration of the second place status, and social status warfare view of people with disabilities. In the last few hours, I have read three items, two books, and one a major advice column, all seeing the disabled, or those with disabilities/illness’ and facilities as to be ‘used’. Hey, problem with having opposite gender children to find someplace to pee? Then find a ‘handicapped toilet’ to use instead of a man going in the women’s restroom with his girls. The two books I read, both had the disabled/chronic illness characters, the OTHER main character in the book, and both die…..so the main character could learn a LIFE LESSON. Both these teen books were on the New York Times Bestseller List. A new generation learning ‘life lessons.’

We can do better. Where IS the disability awareness fiction section in the juvenile fiction section of the local library? Where is the display? (probably next to the invisible LGBTQI one). But at least LAMDA has the LGBTQI awards? Where are OUR awards, our book awards, our film awards?

But we, those disabled and with disabilities/illness’ are just as bad in ignoring. We find our groups, we band together and we bunker down. How many times have I heard, “Oh, I’m just glad after six different ones I finally found a GOOD doctor.’ – so an ‘I’ll find mine and then, finally, done.’ mentality. When do MS and CFS/ME get together to talk about fatigue? When do Fibro and SMA groups get together to talk about muscle pain? Or cancer and SCI groups get together to talk about dysautomia? They don’t.

Change Society, decrease an 80% unemployment rate, hold doctor’s accountable, change medica with awards and Disability Rights ratings of major corporations? Really? Let’s be real, right? OR, are all these things, as they say, ‘tried hard and found lacking’ or ‘found hard and lack in trying’. I am not asking for those with disabilities to change society, I am demanding society change itself! When most countries have a ‘no child left behind’ program, why then is there a ‘fend as fend can’ for those needing assistive devices, employment or assistance?

I have heard countless presidents, Premiers and Prime Ministers talk about the ‘New Economy’, but never about one where leaving over 60% of 1/6th of your workforce behind is outlined. It just HAPPENS. No. It doesn’t. Not in countries with human rights and disability acts, it doesn’t ‘just happen’ is simply isn’t changed from what happened before. The: “We don’t give a damn, because they are too diverse, too ill, and we are too used to this way to change.”

How is it possible when every family MUST know someone with a disability not to organize for basic things like recognizing that in the same way you get shoes and clothes after an accident, not understsanding that getting assistive devices for impairments are the same? How long until recognizing that the old models of looking at work as an assembly line (created in the 1910’s) and every worker as the same is a LIE. Right now we have the technology to employ as many of those with chronic illness’ and disabilities at the levels they can and desire to work. Right now. Except the very companies that make the software, that run the platforms, the top 500 companies are not rated on how they have advanced in employing numbers of those with disabilities. Not even in the Human Rights index. And the government…..it is easier to simply offer money, then portray those on disability as cheaters. OUCH, the BBC disability website regularly runs news highlighting cheaters caught on disability.

Why?

I went to the optometrist and it was ‘assumed’ I was on ‘blue’ which must be some code for disability welfare because once the worker found out I was actually using employment blue cross, they were rendered speechless.

That same day the paper ran an ad on how a half marathon is fundraising for wishes for people with terminal cancer…because the last director stole $100,000. I am positive he was not disabled, or a cancer survivor. He was just another of those who handle the programs, determine OUR objectives, all without talking to us. . From Crip camps to Respites, there are workers who want to talk to significant others, who want to get home, who want to have a paycheck, but they do not see us as the boss. Yet, without us, there is no job. We ARE the job.

I asked how often the care feedback forms came and when there is government review and implementation. I was looked at strangely. The managers, the RN managers, the health care middle managers might have feedback forms to give to government about client care….but what does that have to do with me?

“Errr….I’m the client.”

I am more than my wheelchair, I am more than my breathing device, I am more than my illness, my disability. And so are all those others out there. So are all those with invisible disabilities. So kick it in gear society, kick in it gear about real equality because we all know someone, and we all know the stereotypes (if we didn’t we wouldn’t keep saying, “Kill me if I ever get like…..” – what? Like me?). Stop trying to find the loopholes to the good doctor, the small good parts of the system and accept that it is broken.

Burn it. Rebuilt it. It wasn’t an accident that every wheelchair user in hurricane Katrina was killed. I was fascinated, so I watched 4 disc documentaries, washed away, left behind, left to die, left without medicine and without care for days…in a country that calls itself ‘The World’s Superpower.”

The world is seen as a comic book, according to language. But if a ‘power’ isn’t used to help (much less a ‘SUPER power’), I would kindly say, “What use it is?” But what I think is, “Well, isn’t that what separates the Heroes and the Villains?” It IS a choice.

Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)

2010-05-01T16:25:00.000-07:00

We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do to be able to control himself and his seizure activity. Reality for persons with E. is that "compliance" or the taking of one's medication as ordered, often bears no relationship to any specific level of seizure control. In other words, just because I take my meds is no guarantee that I will stop having seizures.

Guilty of both a misunderstanding and a misapplication of the term “controlled”, we are seriously wrong about the epileptic person to whom the term is applied and about the abilities of medical science (e.g. pharmacology) to meet our social expectations.

Most of us make this mistake honestly enough. Our society, like many others around the world, places a premium on moderated behavior. We refer to the act of moderating one's personal behavior as "self control" and identify the strength of character necessary to make such a personal exertion as "willpower". When we think of someone “losing control”, we think of an individual who stubbornly refuses to make use of his willpower to control himself.

We apply this same train of thought to a seizing person with E.. We view his act of seizing as somehow related to his willpower, character or intent and equate it with either disobedience or rebelliousness. Acts of disruptive misbehavior in a public setting, e.g. temper tantrums or seizures, are unacceptable to us and people who put on such displays are “out of control”. Having to witness out of control behavior makes us uncomfortable, distresses us and sometimes angers us.

A few years ago, my husband and I went to visit a friend in the hospital. While sitting in her room, I had a tonic-clonic event, i.e. a convulsion. Nurses were summoned, my husband attended to me, and when he asked them for assistance, they called security. Later, when we were leaving the hospital to go home, the nurse pushing my wheelchair leaned over to me and asked whether "...we had forgotten to take our meds today?".

As insulting as this sounds, it is all too common a response. Persons who should know better by virtue of their professions cannot resist the notion that somehow persons with E. are simply seizing to get attention. The notion of impudent and willful seizing is utterly ridiculous.

Still, there is a desire to believe that the controlled epileptic is a possibility. The idea persists among professionals and non-professionals, as well as among persons with E.. The differance is, persons with E. understand the distinction between the medical application of the term "controlled" and the ordinary use of the word. Too many professionals continue to insist on blaming the patient, rather than admitting that the treatment is insufficient.

The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.

But what authority are we speaking of and where did it come from?

In 1951, sociologist Talcott Parsons tried to describe formally what ordinary people already seemed to be acting on at some level. Parsons published his Sick Role Theory, and in it he described two rights and two obligations apparently binding for those who become sick in our society. They are: 1) that the patient is exempt from his normal social duties because he is ill; 2) the sick person is not responsible for his illness; 3) the sick person should try to get well; and finally, 4) the sick person should…cooperate with his physician.

Parsons' theory has been worked and reworked by sociologists to try to take into account the variations not accounted for in the Sick Role Theory. Parsons wrote what many plain folks already upheld: if you are sick, you aren’t to blame and you don’t have to work if you try to get well and obey your doctor, nurse, pharmacist, etc.

Here is the seed of the authority we have been searching for in this piece: an apparent bargain between society tolerating the sick so long as the sick respond by respecting our authority and being obedient.

But, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?

In 2002, I read a copy of an email exchange between university administrators concerned with how best to handle students with E. who persistently frightened faculty and fellow students by seizing on campus, sometimes during class meetings. Shamefully, the initiator of the exchange was both a Doctor of Pharmacology and of Nursing and should have understood better than anyone the meaning of "control" as related to her students with E..

She queried her colleagues in cyberspace, seeking to know if any of them were experienced with this sort of situation. The replies were varied, but most offered that the best way to handle this sort of disruptive willfulness was to treat it as a problem of student conduct or behavior and not one of disability. They suggested that an "involuntary medical withdrawal" could work constructively in the situation, and in the student’s best interests. The conspirators pointed out that this was a good strategy for skirting the Americans with Disabilities Act, as well.

A few of her respondents mentioned taking such actions at their own universities, regaling one another with their success stories: one student eventually transferred to another university altogether. Problem solved.

What they all seemed to be unaware of was that twelve years earlier, before the email exchange took place, a woman with E., named Barbara Waters, gave testimony before Congress about her own situation at a state college in Massachusetts. She was being harassed and discriminated against by administrators at her college, who wanted to use the tactic of "constructive dismissal" to force her out. She testified she was about to be expelled from school: her college administrators told her that her seizures were "disruptive" and that her presence on campus was "considered a liability" to her school [2 Leg. Hist. (Barbara Waters)].

Thanks to Barbara Waters and others for speaking up. The results have been good for us all because, since 1990, the discriminatory and harassing tactic of “constructive dismissal” is illegal.

The meanings contained within our use of language often include unstated assumptions. Delving into those assumptions requires our participation. To change how people feel about persons with E., we have to be willing to open up and share our knowledge. It is the only way to dispell harmful and simple-minded understandings from either remaining or becoming widely held social expectations.

Tell Me About Yourself...(my 1st posting, reprinted)

2010-04-08T16:21:00.000-07:00

It is not an easy thing to talk about one'’s family. Conflicts abound and committing fact to paper seems to fall short of the true experience of family life. Each member of my own family is more significant and more powerful than the basic relationship sketch. This is because I am a product of the contextual elements of my life among my family and from within my disorder.

I had two parents. My mother was the most beautiful woman on earth and my father the world'’s most handsome man, and I belonged to them.

Their first child, my older sister, was heroically disabled: the circumstances of her birth were remarkable enough to gain her press coverage for an entire year. Anyone and everyone could see that she was blind and her condition pulled on the heartstrings of them all. I was three when my disability surfaced. No one could tell, unless I was in the violent throes of a convulsion, that anything was amiss. My family overcame their distaste and fear of my epilepsy and cared for me, with the caveat that I would outgrow it one day, if I willed it strongly enough.

A remarkable feature of my life both as a child and as an adult is anger. Not the casual anger that gives expression to the mix of frustration and pain as when one strikes her thumb with a hammer, but a flickering, tentative wisp of emotion that ignites over time and across circumstance toward an explosion, which leads inexorably to oblivion. Owing to the nature of my condition, epilepsy, and the location of its focus in my brain, the anger I sense is often a warning for the onset of seizure activity.

As the sensation grows, I feel an impending doom, a kind of darkening on the spiritual horizon. It can be overwhelmingly intense, stimulating morbid thoughts so that even as a child I knew what it was to contemplate suicide; and I have been long terrified that I would one day relent in the throes of such thoughts. The nearer I come to the explosive event itself, the keener the inconsolable sorrow and sense of desolation become. And then, when the pressure has sufficiently built from within, an explosion of some kind occurs.

Commonly, it is the convulsive action of a tonic-clonic seizure. Sometimes it spends its built-up energy in a less harmful way, as an uncontrollable tremor, a momentary lapse of consciousness or a strong sense of deja vu.

Regardless how the energy spends itself, the end result is the distortion of my life's continuity.

I am certain now that I adapted to living within this distorted reality: I employed tricks of personality and intellect. I learned to read cues in conversation and fill in the empty spaces in the continuum for myself should I lose consciousness briefly; to ask clever questions that would provide me with answers if I didn'’t know how to respond or, to glean from the questioner and his question some nugget that would allow me to make an apparently insightful remark to someone else in the room---in other words, stall, distract, and delight. In so doing, I could only be accused of eccentricity, but never disability.

I transformed myself purposefully, at the age of twelve years, from an introverted child to an extroverted teen so that I could brush away any lingering mark of epilepsy. The urge to transform myself into a perfect being was motivated by a strong sense that I needed to vindicate my mother from the disaster of having two disabled children.

This was born in me one moment when I was about four years old. My sister'’s worth as a human being and my secret understanding of my own worth, as well, was delivered as a casual comment between two women walking opposite my mother, sister and I on a public sidewalk: "“Oh, look how sad...if I were her mother I would have prayed God she had been born dead."

My connection to my mother was primary and endowed with magic. Not fairy-princess magic, but the magic of mythic action: my mother was the one, I believed, brought me back from the terror and oblivion of each convulsion I suffered, and I further believed that without her there to bring me back, I would not return to consciousness. I would remain trapped inside an unconscious blackness until I died.

The two women'’s exchange began slowly to erode my confidence in my mother'’s love and loyalty toward me. If these women from the outside world felt that way, then did she? Did she pray that God would take my sister and I? Did she pray God to take me? Perhaps she did: there was a third child born to my mother and father, also disabled, but she did not live beyond six months of age. She died in our house and everyone said she was better off now and with God. Her death seemed to underscore for me the possibility I was treading on very thin ice as a disabled child.

It had been promised to me that if I willed it strongly enough, I would shed this condition myself. Even my mother, who truly knew better than did the rest that I would never be rid of my condition, suggested that I might try harder to “will away" the onset of convulsions. But, I never seemed to try hard enough and so, in the end, all I could feel about myself was that I had failed. Solace for me was to simply not talk about it any more with anyone, except to mention from time to time that I had once had epilepsy when I was a child.

I was 16 years old when a small town doctor told me I had been cured, because I had no convulsions for over two years. Even when the convulsions returned before I turned 17, like my family, I dismissed them as non-events and clung to the notion I was over the epilepsy for good.

If I could but make the world believe I was perfect and normal, all would be secure and safe. Certainly, the exchange between the women on the street was a powerful one and told me that if I was to feel safe in my own home, among my own family, then I must not be disabled. Since my sister had a value to my mother by virtue of the sympathy she garnered, she would be fine, as long as her existence was an anomalous one. But it was up to me to accommodate and adapt out of my epileptic state. If I had the will, certainly, I could do that.

The truth is, I cannot do it.

I am epileptic. I am not a person with epilepsy, nor am I someone who happens to have epilepsy. My memories are colored by it, just as many of my memories have been obscured by it. I cannot recall a time in my life when my epilepsy was not a part of me: when it did not add to or detract from each experience, decision or act, and it has influenced every step of my development as a human being.

There are still those who feel I am passing as disabled, because I appear whole. They see nothing at all wrong with me. Others believe with an equal conviction that I am malingering, nursing the claim of a disability to achieve some secondary gain from the status. Neither is true, and yet I have experienced this suspicion since I was a small child, whose only society was the family circle.

Even as I aged and moved into conventional society, the features of my childhood experience tagged me: that singular comment from a passing stranger on the street remains with me, as does the distinction between my sister'’s heroic blindness and my ignoble epilepsy. After all, there were no medications that would or could be offered my sister to remedy her blindness, but I had only to take my pills and I might be cured.

A Purple World is a Better, Friendlier World!

2010-03-17T12:19:00.000-07:00

When Cassidy Megan was nine, she wanted to do something fantastic for folks with epilepsy. She knows first-hand what E. is like, because she shares epilepsy with the rest of us. She knows how lonely having E. can make you.

In the U.S., we all know that November is Epilepsy Awareness Month, but having a day in springtime to elicit support is a wonderful thing.

Spring is the time when the buds open, warmer rains fall, and life begins anew... it is also a time when we can open up to others and show them we support them in their lives.

Perhaps the sight of hundreds of people wearing purple is a kind of emotional jolt to those of us with E. who understand it's meaning. The notion that so many others are willing to help us out of the closet and welcome us into society as we are is a most generous way of giving.

By offering to us even a silent but deliberate show of support, many of us can stand a little taller and breathe a little easier. It is as if the whole world has come out for a day to say "we are all your friends".

Thanks, Cassidy, for having such a good idea and sharing it with the rest of us. Because of you and all those willing to wear Purple for a Day we can say that a Purple World is a Better World!

It brings us all closer to one another.

Ring in the New Year!!!

2009-12-31T13:46:00.000-08:00

Greetings,

Wishing you a very bright New Year and much success in 2010.

Paula

Have Merry & Bright Holidays!!!

2009-12-23T11:16:00.000-08:00

Halloween's Coming!!!

2009-10-21T15:55:00.000-07:00

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.

Happy Halloween! to all of you.

Munchausen by Internet

2009-07-13T11:42:00.000-07:00

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:

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

Rita Kuehn book: Peripheral View

2009-07-09T15:02:00.000-07:00

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.

I asked if the author had E. herself or if she had been caretaker to someone with E. and she answered me thus:

“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.

Also, Rita's publishers have written to say that they "would like to offer a 10% discount to your readers

so when you post the reviewer be sure to include the link to Rita's website http://peripheralviewnovel.com/
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.

Invisible Illness Bingo by Anna Ham

2009-06-24T15:16:00.000-07:00

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

How Heavy is Hair?

2009-05-08T14:54:00.000-07:00

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…

2009-05-07T16:01:00.000-07:00

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

2009-05-01T13:55:00.000-07:00

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

2009-04-15T12:24:00.000-07:00

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?

2009-03-28T13:22:00.001-07:00

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.

Wear Purple on the 26th!!!

2009-03-25T14:07:00.000-07:00

CHAPMAN UNIVERSITY WILL!!!

St. Patrick & Epilepsy...

2009-03-17T14:09:00.000-07:00

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.

"Anonymous": Messages Rejected.

2009-03-09T12:39:00.000-07:00

Coming Soon: St. Andrews Village, Abita Spring, Tammanay Parish, Louisiana?

2009-03-07T14:26:00.000-08:00

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.

More recently, however, I am forced to consider a new wrinkle that could have a wider effect on the lives of persons with disabilities, especially as the economy grows more and more frail. Because, in Louisiana, just now, this year, Donna Breaux, Tammanay Parish, and the Weyerhauser Corporation have put their heads together to bring back the colony concept for the warehousing of mentally challenged adults.

The "village" is to be located on the wetlands of Abita Spring, Tammanay Parish, and the place will provide jobs for at least 100 folks. And then there are the residents. Narrowing the focus just a bit, let me say that Donna Breaux is spearheading a project in Louisiana that will create a "village" for the mentally disabled, in an attempt to answer parental concerns over the fate of their disabled children once the parents have died.

Christine Bordelon, reporting for the Clarion Herald, reports that "The number of adults with disabilities is increasing as the service system for people with disabilities evolves. Independent living and
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.

But, perhaps I am wrong here. Perhaps I am too cynical in my assessment of things. And why should I care anyway... what does this have to do with E.?

In the 19th century, epilepsy was considered a part of a diagnoses of retardation and or mental illness. So, if the folks being sent to St. Andrews to live and habillitate, fall into that broad category, how long before it swallows up persons with E.???

(Double click the image to see how the residences have been planned for colonists...)

According to Donna Breaux, the plans for this colony have been inspired by the "successes" in Texas, Alabama and Illinois. I wasn't aware that these states could boast any success stories for their historic experiments. Still, above is a photo of just an Abilene, Texas State Asylum for the Epileptic. It makes use of the village or colony system...

Still, there is one bright spot: according to Ms. Breaux, she and her group are waiting on the Army Corps of Engineers to give the final OK to the project. It seems that the Corps is analyzing the planned development for potential ecological impact on the wetlands. The planners say they will not impact the wetland ecology at all.

That seems hard to believe...

We can all hold our breath to see what becomes of the project. I have my fingers and toes crossed that it will not happen. I really don't want to see those kinds of residences return nor do I want to see an end to Independent Living because of them. I realize that Abita Spring might have a desire to see the plan approved, because they are a community of just under 2,000 people with a rural economy ... the economic benefit of establishing a long-term facility for the care and segregation of the mentally challenged might seem like a gold mine. But, we are living in the 21st century now!!!

This kind of colony no longer has a meaningful place as an alternative for us.

Perhaps a prison or waste site might be a better plan...

Epileptics, Please!

2009-03-02T18:09:00.000-08:00

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?

2009-03-01T16:19:00.000-08:00

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.

International News: Purple Day: March 26th!!!

2009-02-25T23:21:00.000-08:00

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!!!

Or, at least we should all participate and wear purple!!!

I think Cassidy has come upon something wonderful, and I am pleased to be of support to her efforts.

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
Take Care
Emma Williams
Founder/Chief Executive - Matthew's Friends

Secular Stuff About Valentine's Day...

2009-02-01T14:24:00.001-08:00

Valentine's Trivia about Flowers and Chocolates

110 million roses, the majority colour red, will be sold and delivered within a three-day time period.
The red rose was the favourite flower of Venus, the Roman goddess of love. Red stands for strong feelings
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.
15% of U.S. women send themselves flowers on Valentine's Day.
73% of people who buy flowers for Valentine's Day are men, while only 27 percent are women.
More than 35 million heart-shaped boxes of chocolate will be sold for Valentine's Day.
While 75% of chocolate purchases are made by women all year long, during the days and minutes before Valentine's Day, 75% of the chocolate purchases are made by men.
Over $1billion USD worth of chocolate is purchased for Valentine's Day.
One-third of all Valentine cards are accompanied by gifts.
An estimated 25% of Valentine's Day cards are humorous.
70% of those celebrating the holiday give a card, followed by a telephone call [49%], gift [48%], special dinner [37%], candy [33%] restaurant meal [30%], and flowers [19%].
The Italian city of Verona, where Shakespeare's lovers Romeo and Juliet lived, receives about 1,000 letters addressed to Juliet every Valentine's Day.
About 3% of pet owners will give Valentine's Day gifts to their pets. (Probably chocolate.)
The most fantastic gift of love is the Taj Mahal in India. It was built by Mughal Emperor Shahjahan as a memorial to his wife.

Quotes for Your Valentine's Day Cards

Will and Guy invite visitors to write one of these quotations in the Valentine card they send this year:

Neither a lofty degree of intelligence nor imagination nor both together go to the making of genius. Love, love, love, that is the soul of genius. Mozart
Love is indescribable and unconditional. I could tell you a thousand things that it is not, but not one that it is. Duke Ellington
To love someone is to see a miracle invisible to others. Francois Mauriac
Love is not blind, it simply enables one to see things others fail to see. Anonymous
'I love being married. It's so great to find that one special person you want to annoy for the rest of your life.' Rita Rudner
Never close your lips to those whom you have opened your heart. Charles Dickens
Love is an irresistible desire to be irresistibly desired. Robert Frost
Kissing...
- The science of kissing is called philematology
- Lips are 100 times more sensitive than the tips of the fingers
- A real kiss may quicken the pulse to 100 beats in a minute
- A French kiss moves about 29 muscles in the face
- One little kiss burns up to 3 calories. The longer the kiss: the better the exercise
- The world's longest kiss took place in New York City, lasting 30 hours, 59 minutes, and 27 seconds
- It is thought that men who kiss their wives every morning before going to work live 5 years longer than men who don't
- 70% of people aged 16 to 24 years had their first kiss by the age 15, whereas only 46% of their parents had kissed by the same age
- Couples may transfer an average of 9 milligrams of water, 0.7 milligrams of protein, 0.18 milligrams of organic matter, 0.71 milligrams of fat and 0.45 milligrams of salt to each other with each open-mouthed kiss
- It is said that an average woman kisses about 29 men before getting married
- A kiss can contain up to 278 of different bacteria, most of which are non-dangerous
- An average person spends two weeks of his or her life kissing
- Two out of every three couples turn their heads to the right when they kiss
- Eskimos, Polynesians and Malaysians rub noses instead of kissing
- First movie kiss was in 1896 when John C Rice kissed May Irwin in the film called 'The Kiss'
- Kissing helps reduce tooth decay because the extra saliva it creates helps clean out the mouth
- More than 4,400 couples arrived together in the streets in Chile for a ten second kiss, this set the world record for the largest number of people kissing simultaneously
How to stop people from bugging you about getting married
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.

Valentine's Day is Coming!!!

2009-01-28T15:00:00.000-08:00

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?

Nope. An interesting story is that St Valentine was the patron Saint of Epilepsy because he was supposedly a sufferer and took a keen interest in those who suffered from this affliction and later, those who suffered this disease were said to be suffering from Valentine's sickness.

To the right are some of my favorite expressions of the day, if not my favorite candies. I am like many women, someone who really prefers chocolate... good quality chocolate!!! Still, these take me back to a much simpler time, days of elementary school angst.

My mama always wanted me to fit in well, so she was great at making certain I had plenty of these little boxed candies to include with my class Valentine cards. Giving them out was fun. Getting Valentines from other kids was such an act of inclusion to me. I felt like I fit in, like kids liked me, like someone cared. It always felt like such a grand day to me.

And then there were the cupcakes! Ah.... Seemed like someone's mother took time out to make cupcakes. Over the years, some of them were really good---the kind where the frosting stayed put and the cake was moist. Then, there were the others---cake too dry to eat, really, or scorched on the bottoms. Still, with the cupcakes came fruit punch and time away from the books to enjoy each other's company. A good day, as I recall.

Well, this is my Valentine's Wish for all of you:

give a little, get a lot and enjoy it all!

Be happy and love one another.

Epilepsy and A View of the Self...

2009-01-23T16:31:00.000-08:00

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.

Another comment

2009-01-15T13:41:00.000-08:00

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

By Randolph Siegel

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.

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.

Life, Death and the Long Haul with E.

2009-01-06T14:33:00.000-08:00

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.

Controlled Substances and AED's

2008-12-30T16:43:00.002-08:00

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.

Nope, my friend's major error was that she had medications on her in an unmarked pill box that fell under the controlled substances act. You see, Big Brother is watching!

She had a dose of Xanax and one of phenobarbitol among her pills, but since these were not in their original pill bottles, complete with pharmacy and prescription numbers, she was arrested for possession of a controlled substance.

Her advice to everyone is that if you must travel with your meds, do so only if they are in their original bottles. This constitutes the proof you will need that they have been legitimately prescribed to you.

What to Ask for this Christmas?

2008-11-25T12:50:00.000-08:00

I don't have my shopping done. I don't even know for certain who I am giving gifts to this year... But, I have a suggestion or two some of us might want to ask Santa to bring us.

A few years back, the BBC created a wonderful mini-series about the life of an unheralded British prince. His secret life was made that way because of his epilepsy. It is a truly touching story, beautifully shot in Britain, and worth adding to any DVD collection. A good gift for movie buffs, certainly.

Then, for those of us wanting to help others for whom we are concerned, let me suggest medical alert bracelets, silicone bracelets, safety tats.com and tottoos.org... these are wonderfully temporary skin tats for children and adults that provide needed emergency info without wearing a bracelet or necklace.

So, you can use Santa's favorite method of obtaining further information on these products by simply looking in either Google or Yahoo. All of these things can be located on the web.

Now, I have to get ready for Thanksgiving dinner.

More about Christmas, later.

Protecting "Normal"...

2008-11-24T13:47:00.000-08:00

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???

2008-11-20T12:43:00.001-08:00

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?

2008-11-12T13:07:00.000-08:00

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.

Epilepsy Awareness Month!!!

2008-11-06T14:44:00.001-08:00

It's that time of year again when we should all consider making others aware of Epilepsy.

Here is a little ammunition to get the conversation rolling:

1. Epilepsy outstrips AIDS in annual deaths

2. Some 181,000 persons will develop Epilepsy each year.

3. The Department of the Army estimates that as many as 50% of returning injured Iraq and Afghan vets will develop E. within the next 15 years.

4. The same percentages apply to veterans from the VietNam war.

5. An epileptic "seizure" is not necessarily a "convulsion".

6. There are an estimated 22 different seizure types.

7. 1 in 50 people already have Epilepsy.

The most important thing an individual with E. can do for himself is to stand up and identify as a person with E.

Stigma, or a feeling of disgrace or shame can be eliminated if we stand up and speak out. Stigma is the most dangerous aspect to life with Epilepsy.

Have A Thrilling Halloween!

2008-10-27T12:30:00.000-07:00

Halloween, Jack O'Lantern Looking in Window

The Lamictal Skin Rash...

2008-10-01T11:46:00.000-07:00

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...

2008-09-28T14:34:00.000-07:00

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

2008-09-07T12:15:00.000-07:00

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?

2008-08-20T10:57:00.000-07:00

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.

The Mind's Eye...

2008-08-06T15:38:00.000-07:00

For those folks who think they know what E. is, this may be an image similar to that which they see in their mind's eye as "epilepsy manifested" or the expression of epilepsy. This image contains an aspect of wretchedness. I have to point out that this isn't the whole of the epilepsy experience, but it is frequently what folks describe back to me. They have no idea how varied and complex a disorder E. really is.

What do you think of when you think of E.?

Who Owns Me?

2008-07-24T13:23:00.000-07:00

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

Laid out, exposed and feeling helpless at the hands of doctors and medical staffers can be nightmarish for many of us. As we mature, it is not unreasonable for us to consider the question: Who Owns Me?

The physician-patient relationship has all the components of a power relationship.

And, as is true of rape trauma, the patient/victim often feels the brunt of the effect, especially when the experience has been a bad one.

Bad because of fear and pain. Bad because of a sense of helplessness. Bad because of a sense that the experience can and will be repeated over again many times throughout one's lifetime.

So---'who owns me' becomes a gateway statement for one seeking healing from trauma and a return to a sense of personal agency and control over her body integrity and ownership.

In some circles, the body is discussed in terms of property ownership.

C. B. MacPherson (legal scholar) suggests that the concept of property resides and encompasses the notion of property as rights. Meaningful among males, certainly.

But, when one encounters a feminist perspective that points out property as inclusive of chattels, one begins to intuit a remnant concept of a woman's body and parts as somehow still within the male property/rights provenance.

Do we still think of men as rightfully possessive of women's bodies? Phyllis Schaffley does.

Does this notion transfer to the doctor-patient relationship, when the doctor is male and the patient female? Is this one source of the nightmare some disabled suffer from?

I don't know.

But I might suggest that the gender of the specific doctor has little bearing on the sentiment because the institution of medicine and its practice remains oriented to a masculine sensibility. Dissent from patients is often perceived as a cue for an aggressive or even bullying response from doctors---male or female. So, disabled patients, at their most vulnerable, often feel reticent to dissent from a physician's declaration of necessary testing or treatment.

I have learned, over the course of my lifetime, to take Nancy Reagan's advice when I am so moved, and

'Just Say No'.

Susan Brison contributing to Feminists Rethink the Self, Diana Tietjens Meyers, ed. (Boulder, CO: Westview Press, 1997) offers:

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.

And so it would seem that the isolation most of us with E. have experienced harms us and keeps us from healing. All the more reason for telling others about our experiences with epilepsy. Communication, socialization is vital to our improved mental and emotional well-being.

It can also alleviate our concers over such haunting questions as "Who Owns Me?"

Education as Equalization.

2008-07-13T17:34:00.000-07:00

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 suppose now, at 55 years of age I can say I get it. That doesn't mean I am any good at it. Seems that one of my deficits has to do with money.

Really, not a joke. I have an intellectual deficit when it comes to comprehending and using money.

The one fascinating thing that has helped me most as a female epileptic has been the socializing, equalizing benefit of a college education. Sure, it didn't teach me how to overcome my deficit with money, but I do have a better comprehension of it than ever before and, I can admit to my intellectual deficit for what it is, recognize it, and adapt.

College isn't an event, a professor told me. It is, instead, a process. You can access this process at anytime during your life. It doesn't have to occur at the end of high school---it can come when you are much older than that. In fact, as a former president of the Non-Traditional Students Organization for Chapman University, I can tell you with certainty that less than 50% of all college freshmen are "traditional", meaning that they come directly from high school with no break in between. So, a majority of college freshmen belong to the category of American adults who engage the educational process later in their lives. This makes them able to handle the challenges well and it makes them more likely to dedicate themselves to the process they have engaged, to maximize its benefits.

I know from personal experience. It is true. I wanted to succeed and I did it! Now I have a B.A. and I have re-engaged the process to pursue my Master's degree at the same school.

College affords us tools we wouldn't ordinarily have. It allows us to achieve without the pressures of competition. In school, competition is only with yourself, unless you inform others of your grades, no one knows or has the right to know. So, you are only competing against yourself.

It is a unique situation. It gives you time and space to breathe, to read, to learn, and then to incorporate what you have learned in a way that will make sense to you and serve you.

Education allows one to network. As an alumni, there are connections you can use to find work, get housing, etc.

But, more than anything else, it arms you for the rest of your life. Your degree or degrees belong to you alone. They are testament to your work and fulfillment of requirements. They give you an equal footing with non-disabled in the work place. They afford you a means to become socialized within a community of scholars before you take on the community of workers. This enables you to grow stronger, to have a psychological toughness from the experience of knowing you can take on a complex task and succeed at it. For example, my "psychological toughness" comes from being able to refute, if only to myself, that I am not intellectually inferior because of my E... And yet, it allows me to be fearless or at least less fearful of the residual deficits I encounter that are a part of my E. I am, as an educated woman, able to assess my condition, communicate it more effectively, and understand myself better.

This has helped me immeasurably.

From my perspective, it is vital that as many disabled as possible attend college. There are a million ways to approach it, whether it is by community college first, then transferring to university... But, the one thing to keep in mind is that it is a source of power we cannot do without. If you are out of school, reconsider going back to school... if you are in high school, make plans to go on to college.

Each of can use the extra armor higher education will provide. Take advantage of it, go for it! Allow yourself the advantage of a an equitable opportunity in society. The world is waiting for you to make your contribution-you have it in you to give!

For Disability Carnival #41: "Death Becomes Her" Theme

2008-07-13T11:31:00.000-07:00

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:

Benson DF.

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.

Whining About Chronic Illness/Disability!

2008-07-12T13:05:00.000-07:00

When a chronically ill person crosses over into disability, I believe that Parson's Sick Role Theory can no longer apply.

Why? Well, because instead of insuring an acceptable status for the ill person, Sick Role Theory, as applied to the chronically ill or disabled, provides a conundrum in our perceptions of the disabled individual's status.

This means that as long as the chronically ill or disabled individual participates in the guidelines established by the Sick Role Theory, the individual is left open to denigration of status, ridicule.

Instead of being an individual who is participating in his care, the chronically ill/disabled individual is now a whiner.

Following doctors' orders and trying to 'get well' as his only task is now viewed as self-centered behavior.

If we can recall, the nut of Talcott Parsons work centered around some pretty specific guidelines:

In 1951, sociologist Talcott Parsons tried to describe formally what ordinary people already seemed to be acting on at some level. Parsons published his Sick Role Theory, and in it he described two rights and two obligations apparently binding for those who become sick in our society. They are: 1) that the patient is exempt from his normal social duties because he is ill; 2) the sick person is not responsible for his illness; 3) the sick person should try to get well; and finally, 4) the sick person should…cooperate with his physician.

Parsons' theory has been worked and reworked by sociologists to try to take into account the variations not accounted for in the Sick Role Theory. Parsons wrote what many plain folks already upheld: if you are sick, you aren’t to blame and you don’t have to work if you try to get well and obey your doctor, nurse, pharmacist, etc.

Here is the seed of the authority we have been searching for in this piece: an apparent bargain between society tolerating the sick so long as the sick respond by respecting our authority and being obedient. But, this Theory presupposes that the ill will recover and that the process will be a finite one, not an enduring one.

Frustration with a never-ending illness creates a variety of responses, among them the urge to scapegoat. The chronically ill/disabled are unable to 'fix' themselves and must continue in their status as ill/disabled, making them vulnerable to scapegoating. The "everything would be OK if you..." or "the only thing you are concerned about is yourself" position creates a designation for the chronically ill/disabled impossible to escape. In place of support, all support of an emotional nature is suddenly withdrawn... it can be damaging for all concerned.

For some, this kind of status confusion has led to violent attacks. The implicit thought seems to be, at least from outside of such frustration, 'if I can't fix your condition, at least I can fix my own frustration with your condition!' This could explain some of the recorded episodes of violence against disabled people all by itself.

Apparently, there are theorists working to remodel Parson's original theory. They note that Talcott Parsons did not mean for it to apply to the chronically ill in the first place. It was intended to apply to acute illness alone. But, aspects of it seem to migrate to everyday thinking about the chronically ill and disabled.

We need something better, a newer, model.

Disability Hierarchies

2008-07-11T14:40:00.000-07:00

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...

Then there are folks with vision impairments, who have set themselves in a class apart, and who, in the United States anyway, have managed to get consistantly higher disability benefits through advocacy. My hat is off to them, whatever they can get is good.

But it does not help with presenting a united front with people who have other disabilities. And then, there are those with cognitive impairments. Often relegated at the bottom of the totem pole. Too many people in the Independent Living (IL) movement aren’t able (or willing?) to cater to that group’s needs (although to be fair, I hear the situation is improving). There is a feeling that these folks are not worthy of the respect of the disability community. In fact, the disability community as a whole behaves towards people with mental

illnesses somewhat like society at large behaves towards the disability community.

It is my experience that Sean is absolutely correct. As a person with E., I can say that I have visited many disability sites only to find that epilepsy is not listed among any of the disabilties they address. Can there be anything more totally debilitating than epilepsy?

The results of a recent survey conducted by Disaboom should be enlightening. The survey found that 52 percent of Americans would rather die than live with a severe disability. Disaboom, an online community for people with disabilities, says it announced the shocking results in an effort to educate people about why this viewpoint is so tragic. But, like so many disability websites, Disaboom does not list epilepsy among the disabilities or conditions it addresses. This is suggestive of an interesting conclusion: both the greater share of Americans and Disaboom are engaged in ableist thinking when it comes to dealing with or lending a hand to persons with epilepsy.

Remember the ADA? The civil rights legislation designed to afford the disabled full protections as citizens? Well, a creator of that legislation was himself a person with epilepsy--- Tony Coelho. He was a person who, without regard to hierarchy, saw

a need for all of us to receive protection as Americans.

The ways in which folks categorize epilepsy are fascinating. In the first place, to class epilepsy as a mental disorder or disease is dead wrong. Neither is it a stand-alone cognitive impairment. There was a time when these classifications could be supported by the medical establishment, but today, such classifications are obsolete. Though epilepsy resides in the brain, it is not a mental disorder. Though it can affect cognition, it is not a cognitive impairment. Epilepsy is a disorder of the brain, and is the most common one in the world.

Epilepsy is a general term used for a group of disorders that cause disturbances in electrical signaling in the brain. Like an office building or a computer, the brain is a highly complex electrical system, powered by roughly 80 pulses of energy per second. These pulses move back and forth between nerve cells to produce thoughts, feelings, and memories. When those impulses move more rapidly-as many as 500 per second for a short time-due to an electrical abnormality in the brain, an epileptic seizure occurs. This brief electrical surge can happen in just a small area of the brain, or it can affect the whole brain. Depending on the part of the brain that is affected, the surge of electrical energy can cause:

Changes in a person's sensations or state of consciousness.

Uncontrolled movements of certain parts of the body or of the whole body.

Epilepsy is also known as a seizure disorder because the tendency is to have recurrent seizures. Epileptic seizures vary in severity and frequency, and even in the time of day they occur.

Okay, so that's the basics of what epilepsy is. Now it's up to you to learn the details of an epileptic's experiences in living. Instead of telling us that you don't want us, or that you don't consider us disabled, open up, include us and learn something new...

We're all waiting!

Happy Fourth of July!!!

2008-07-04T00:01:00.000-07:00

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...

Hello, World!

2008-07-02T15:48:00.000-07:00

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.

It has been fascinating to me to see the origins of my readers. Sort of like looking at stamps, I suppose, particularly when there are one or two from unexpected yet far away places.

If there are subjects I have not yet written about that would interest you, do not hesitate to send me a comment and I will do my best to reciprocate

with an appropriate post.

Again, thanks for reading!!!

Who's Got What and Why?

2008-06-26T16:52:00.000-07:00

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.

Did I miss something? Is there some ridiculous shortage of past disabled heroes that means they must be periodically shifted from one disordered universe to another so that we may all share them?

I think not.

I do think, though, that in order to continue to make a kind of academic news, researchers like to go back in time periodically and re-diagnose those who have already been diagnosed and then declare that they actually suffered from something entirely different!

D. Blumer, writing for the American Journal of Psychiatry, "The illness of Vincent van Gogh" splits the difference between diagnoses: he tells us that Vincent had temporal lobe E. that was aggravated by drinking absinthe, but that in his early years, his symptoms included depression, manic behavior and such, and that this suggests he was troubled with bipolar pathology.

With much respect, I would suggest that if the writer were familiar with the intricacies of TLE, he might dismiss any suggestion of bi polarism and instead declare that symptoms of TLE are known to mimic both bipolar and schizophrenic pathologies.

Mistakes in diagnosis have been common over the history of TLE.

But, then there is a bigoted strain of reluctance still present among many writers who simply refuse to name E. even in the face of medical history. Lewis Carroll, Napoleon Bonaparte are two examples. Though the diaries of both men write that they have E., many historians simply leave out or work diligently to reappraise their symptoms so that they can rediagnose them as suffering some other condition than epilepsy.

There are even those working on a reappraisal of Dostoevski's epilepsy.

This kind of transformative research does nothing for either the dead or the living. If we are to progress as a community, then we must insist that our social history be kept intact. Because there is prejudice against the condition, this cannot mean that the lives of historical figures should be altered to reflect a more acceptable diagnosis, particularly when the individuals themselves are self-declared persons with E.

By passively allowing these kinds of acts to take place, we continue to discourage ourselves from making healthy self-declarations of our own condition and we effectively limit any broader social acceptance of epilepsy.

FEAR, Anxiety and Epilepsy

2008-06-09T13:38:00.000-07:00

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!

This is because the bio mechanics of Fear act on the brain, experts say. The same is true for Fear's twin, Anxiety. And, for some of us, this action is just destabilizing enough to trigger a generalized or partial event. The very thing most of us work so diligently to avoid...

Getting control of one's Fear can be daunting. Most of us try to establish for ourselves some kind of rationale that will tell us what we are afraid of at that moment. Attempting to identify the source of one's Anxiety can be equally unfruitful. This never worked for me, because it seemed only to heighten my Fear and make me more vulnerable---sometimes to the point of feeling the urge to flee.

Okay, so what does one do about one's Anxiety & Fear???

Some people offer motivational advice.

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.

But, someone once gave me something I can use even in the crisis moments: Zen breathing techniques! For me, this has worked pretty well.

I am no master of this at all, but I learned enough to know that when I become afraid, I want to hold my breath, and this natural urge compounds my troubles. Now, I have learned to breathe from my diaphragm. This is sometimes called "belly breathing". The effect is a good one, because when you can control your breath, you can act against both your Fear and Anxiety as well as the physical responses they tend to create.

Belly breathing is a method you learn that requires you to breathe much more deeply---instead of drawing breath from your chest alone. For me, the technique begins with an exhale: I place a hand on my belly above my waist to feel the muscles contract. When I can exhale no further, I draw in a breath, slowly and deliberately, feeling the muscles in my belly act to draw in my breath. This makes me want to relax, and so I allow myself to feel the relaxation. Then, I do it again. For me, it can take five or six breaths to calm me down, or several more than that. I keep my posture straight when I do this, as it assists the action. I can do this sitting, lying down or standing (although I don't usually like to do it standing because I don't always trust that I won't fall over...).

Some offer the advice that belly breathing is like filling a glass---you pour the liquid into the glass, filling the bottom of the glass first, to the top and not the other way around. In belly breathing, you fill your belly first and then your chest...

If you click on the title of this post, the link should take you to a video file that will instruct you how to get started with the belly breathing technique.

Of all the advice I have ever received about learning to control my seizures, the breathing has been the most successful, the most consistent. This is not to say that a seizure will not happen on its own anyway, but I have found I have the best luck when I remember to use the breathing technique.

See what you think!!!

Will "Ugly Laws" Make a Comeback???

2008-05-30T13:53:00.000-07:00

(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.

From the time of the Civil War until 1974, the United States had in place city ordinances, "ugly laws," that allowed the arrest and punishment of individuals considered physically unattractive.

In fact, what was meant by "ugly" was disfigurement, disability, and disease. The main, stated purpose for such laws was to relieve the public from the sight of repugnant members of society. The real offenses for which these disfigured, disabled, and diseased individuals were arrested were (a) poverty and (b) begging. In a circular way, repellent features (missing limbs, sores, etc.) were often the reason for poverty and begging: such members of society could not gain employment and thus resorted to begging.

Public protest and unenforceability were the reasons that the ordinances finally passed into oblivion. Today, however, similar patterns of employment denial and prejudgments about criminal status exist for the poor and disabled.

The desire to sanitize society, thus making socialization a pleasant, unchallenged act, is particularly hard on military veterans. After WWI, disfigured vets found returning to ordinary life difficult because once disfigured, they were never allowed to blend in again. After WWII, the same thing happened. Men and women whose features were newly augmented with prosthetics became resident sideshows in their communities.

One wonders what the cost will be for the troops returning from Afghanistan and Iraq---the prosthetics are much improved since WWI & II, but society has gotten used to never having to look at someone else's hurts.

And what about the thousands of new epileptics returning home??? Will their presence signal an improvement in care for all of us? Or, will they simply be urged to go home and hide from society... because if they do not, will they, like the Florida kindergartner with Asperger's syndrome, find that they are voted out of their community for being "annoying"?

Fight Back---Complain!!!

2008-05-28T13:07:00.000-07:00

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.

The best way to do this is to file a complaint with the medical board in the state the doctor practices. Here is a website that can give further information about this, what to expect and how to do it: http://www.iatrogenic.org/complaint.html

The next time I am asked to prove I need my meds, the next time I am abused for my condition, I will take action and file a complaint. If for no other reason that it may help to establish a pattern of abuse, so that the next person who sees the same fool might have a better chance of avoiding it.

Just thought you might like to know a way to get proactive...

The Persisting Stigma of E.

2008-05-22T15:12:00.001-07:00

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.

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 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.

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!!!

To Bell the Cat...

2008-05-01T15:22:00.000-07:00

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!"

One day, while they were all huddled together, one of the mice had an idea: "What we need to do is hang a bell around the cat's neck so that we can hear him coming!" According to Aesop, the mice worked out how they would accomplish this feat and did so, solving their problems with the cat...

I submit that many of us are huddled together, still trying to figure out how to get the bell around the cat's neck! I know crip-eleptic mice are still huddled and still working out how to hear the cat coming before it attacks them.

Fear of the cat makes each of us vulnerable to him. We have to stand up, and we have to make it clear that we refuse to be eaten just for living in the same world as the cat.

Crip-eleptics are very afraid of the cat. They have been for centuries and they know the cat can ruin lives. They have seen it happen.

Each year, there are those who are arrested by police because their behavior after a seizure may be antagonistic or belligerent. Because police are poorly trained about persons with E., they assume the behavior is willful, and directed toward them, so they make the arrest. Once in the system, these folks become its victims and their lives are never the same afterward.

My own idea for belling the cat is to become vocal and well-informed about the social aspects of our histories. Then, having gained this power, we must stand before the cat and speak up for each other when things go awry. If we can get no immediate satisfaction, then we must resort to becoming even more public, using our talents as writers to criticize the cat in print...

We must volunteer ourselves in an effort to bridge the chasm of understanding between the cat's world and our own. And, when injustices occur, we must be available to help any way we can.

So far, I have discovered that belling the cat is a gradual process. But once accomplished, it lifts a terrible burden and makes living better.

Persons with epilepsy are not the only ones who worry about the cat.

Many of us find that the cat creeps up on us unexpectedly at times. Together, we can as a complete community succeed, if we are joined in a single effort against the cat. And, we can leave no one out, because each of us may have something essential to contribute to the strategy for getting the bell around the cat's neck.

Frustration...

2008-04-30T13:40:00.000-07:00

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...

It is difficult to express how long and deep frustration is when you live with E... Want information on E., go to the web and search for a non medical site about it. When you find one, see if they talk about daily living with E., or the emotional, psychological, sociological aspects of life with it. Most of them don't.

What you will find, in huge numbers, are sites that advertise drugs, talk more about tests and findings, doctors etc.---in other words, an entire medical cocoon to wrap up in!

When you go to the doctor, how hard do you have to struggle to get information relevant to you? Besides generic advice on getting enough sleep, watching your diet and taking your medications regularly, what do they really tell you?

Epilepsy is frequently misrepresented. On television, when they want to show a person

with E. seizing, often, the actor presents E. as something like a two-year-old throwing a tantrum on the floor---lots of flailing of arms and legs.

Never accurate.

Lately, I have been hearing more and more comments related to E.---"he got so mad he looked like an epileptic lizard" and the like. Or, "you don't have to get all epileptic about it". This isn't sensitive and does not help any of us!

Ann Jacoby and Joan Austin have written:

For many people with epilepsy, the continuing social reality of their condition is as a stigma. Epilepsy stigma has three different levels; internalized, interpersonal, and institutional. While there have been documented improvements in public attitudes towards epilepsy, the remnants of "old" ideas about epilepsy continue to inform popular concepts resulting in a difficult social environment for those affected. The social and quality of life problems arising from a diagnosis of epilepsy can represent greater challenges than are warranted by its clinical severity. The relationship between stigma and

impaired quality of life is well documented. Tackling the problem of stigma effectively requires that all three of different levels at which it operates are systematically addressed. (Ann Jacoby, Joan K. Austin (2007) Social stigma for adults and children with epilepsy, Epilepsia 48 (s9) , 6–9 doi:10.1111/j.1528 1167.2007.01391.x Epilepsia 48 (s9) , 6–9 doi:10.1111/j.1528-1167.2007.01391.x .)

What about people in general? How about elementary school? Ever been faced with the suggestion that your son or daughter cannot be accepted because the epilepsy might frighten others or be an insurance liability?

How about employment? Housing? Two terrific areas of concern, and both frequently make use of the "insurance liability" phrase as a means of denial... Some years back, I can recall being denied employment on the basis that I didn't drive---even though it was not a requirement of the job, it was the basis of my denial. That same year, I applied for an apartment, and was told I didn't qualify because I had E., and because I "might turn violent" and wreck the place.

What am I expecting to find, since I have come out as epileptic?

Equality, acceptance, and opportunity.

Paranoia as a feature of E.?

2008-04-30T11:33:00.000-07:00

According to Orrin Devinsky and B. Vasquez in Behavioral Changes Associated with Epilepsy,

Epilepsy can be accompanied by changes in cognition, personality, affect, and other elements of behavior. There is no single epileptic constitution or personality complex. A unifying theme to the behavior in epilepsy is diversity. As one looks at the behavioral traits reported in epilepsy, a specific and consistent pattern is lacking. Rather, extremes of behavior are accentuated: sometimes in one direction, often in both directions. Changes in emotional state are prominent among behavioral features in epilepsy. Some authors describe a prominent deepening or increase in emotionality, whereas others identify a global decrease in emotional life and content. Emotional lability is also reported. Sexuality and libido are typically decreased, but fetishism, transvestism, exhibitionism, and hypersexual episodes also occur. Concerns over morality may be lacking or exaggerated. Patients may be irritable and aggressive or timid and apathetic. The impressive list of people with epilepsy in politics, religion, arts, and sciences suggests a positive expression of this behavioral spectrum. Psychosis, depression, paranoia, and personality disorders may represent a negative pole of epilepsy-related behavioral changes. The most important aspect of behavioral changes in epilepsy for physicians is to recognize and treat dysfunctional behavior. Depression is a common problem that is often unrecognized and untreated. Other treatable problems include impotence, anxiety, panic attacks, and psychosis. Identifying risk factors will, it is hoped, assist in developing methods to prevent these disorders,

Neurol Clin, 1993.

The feelings one may develop toward others can be devastating to personal and social relationships. When one mistrusts and suspects others constantly, one loosens his or her grip on what is real, what is actually going on around him/her. It can be difficult to live this way, for everyone, and there is an urge to isolate one's self away from others, something that is harmful to the sufferer.

Paranoia itself, is often described as a

disturbed thought process characterized by excessive anxiety or fear, often to the point of irrationality and delusion. Paranoid thinking typically includes persecutory beliefs concerning perceived threat. In the original Greek, παράνοια (paranoia) simply means madness (para = outside; nous = mind) and, historically, this characterization was use to describe any delusional state.

Living in the grip of paranoia is difficult. It makes trust impossible. It can also make communication with others difficult because the individual may feel he/she needs to edit everything he/she has to say.

In my own case, I have found relief from the paranoia to which I am prone through my medications. They act as a stabilizing element, and for me, this has meant a great and positive change in my life's experience.

Now, the biggest anxiety I suffer is directed toward my doctors, whenever they want to discuss changing my medications!

Finding stability is difficult. Being free from seizures is only half the battle for me. I need also to be freed from the paranoia that seems to accompany my condition. I am TLE, left-side, and being rid of the instability makes me able to be consistent in my personality, thinking, and interactions. This is a miracle!!!

To be able to remain in my mind instead of outside of my mind is wonderful to me...

Epileptic Identity: I Am Crip-eleptic, Are You?

2008-04-27T13:25:00.000-07:00

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.

But, there is something else: when one changes doctors, there seems to be an urge on the part of the new doctor, to try to prove a misdiagnosis by any former doctors---in other words, the new doctor will actively attempt to "discover" that one is not "really" epileptic!!! This is a problem.

It is also a problem when doctors want to make us "prove" that we suffer E., and here is an example of what I mean, from a friend, Kay, at Epilepsy-L:

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.

I have had this happen to me, when I was a teen. It is a kind of abuse that is stunning and one you feel no one would believe, even if you told them about it!!!

I have formed my entire identity around the knowledge and experience of E., warts and all. The urge to re-diagnose me is destabilizing and a kind of threat to the integrity of my life's experience. To alter my reality by attempting to re-classify my status can be unnerving.

So, does this mean I want to be epileptic? Does it mean I have something to hide? Am I afraid to lose my claim to being disabled?

In a sense that is most personal to me, the answers to each of these questions is Yes. Yes, I want to be epileptic, yes, I have something to hide in that I want to retain the integrity of my experiences, as I know them, and yes, I am afraid to lose my claim of disability, because to do so would mean a massive readjustment to every part of my life, and I feel reluctant to want to engage that process!

Additionally, I fear the notion that if I were re-diagnosed and E. were ruled out, that I would have to live with the notion that I had been lied to and that others might think the lie was my own... trust issues again.

I have a new word for what I am: crip--eleptic. Sort of like crip--elicious, I guess.

But, it is important to realize that the disability community share a common thread with the abled community: a distinction and established hierarchy between those considered disabled and those whose conditions are consequential of some "personal tragedy". It seems that rather than being considered neurodiverse, we persons with E. are considered victims of "personal tragedy". How is that possible?

Perhaps it is owing to the fact that there are few of us individuals who come out publicly as persons with E. We are not always identified as disabled because we still want to pass as normal, whenever we can. Yet, we aren't really able to pass convincingly in all situations. Driving is one of those areas, to be certain.

Tell someone you don't drive or can't drive without revealing your E.---the first thought that creeps into that person's mind is that you never learned to drive. The next thought is that you don't own a car. No one ever thinks there is any other reason for not driving, particularly in California, where I live. In my state, it is simply abnormal not to drive or own a car!

I have only been out of the closet personally since about 2000. It has changed my life and freed my mind, and it allows me to reach out in ways never possible before. I have a new sense of myself and of others. My advice is to announce yourself whenever possible, with pride.

The truth is, the only way we will ever be able to change the ways folks see us, portray us, is to speak out and defend ourselves.

In the dim recesses of my past, I can recall a time when folks with cancer never mentioned that they had this disease. To do so would invite repercussions---loss of employment, estrangement from friends, and more. But today, most of us are aware of cancer, know folks with it, and have lost most of our prejudices against this disease. If cancer victims had not spoken up, progress against this disease would have been slowed tremendously and the social acceptance of persons with cancer might have led them into the isolation familiar to cripeleptics.

Speaking up for one's self has many benefits: it allows you to define the rules of the game, socially. Anytime one can do that, one has a much better chance for success!

Identity and E. are sometimes two seemingly opposing ideas. For one to want to be identified as crip--eleptic, one must learn to be unafraid of the opinions of others. Once this takes place, one can stand up and be a whole person, keeping nothing hidden.

Driving...

2008-04-26T13:13:00.000-07:00

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.

Patient and Guinea Pig: The Same Thing?

2008-04-25T14:20:00.000-07:00

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.

Mike relates his anxiety with docs and hospitals in this post and he raises questions that seem only relevant to crips like us---all of us!

When was the last time any of you felt secure with your doc??? I know I haven't felt secure with a doc for a very long time. This is probably because once they discover my E., they seem to want to prove I don't have it, prove it is somehow psychogenic and not 'true E.' or disregard my condition altogether, because they feel E. is a common disorder but not a dangerous one!

Then, there are those who feel we are great subjects for research studies. So, they begin to see us, not as human beings any longer, but as study animals. I don't know what is worse, the notion that I am being disregarded, discredited or dehumanized!

"Do No Harm" seems only relevant to docs when they are dealing with otherwise able-bodied patients. When it comes to their crip patients, they seem anxious to shuffle us off, into studies or into some other care protocol.

How often are persons with epilepsy shuffled off into psychiatric care or into psychological counseling? How often are our seizures attributed to these kinds of conditions, even though there is plenty of information in journals concluding that E. often presents in ways that are imitative of psychiatric pathologies???

Does this mean docs are bigoted, or does it simply mean that many, many docs are undereducated when it comes to coping with epilepsy? My own take on this is that docs are frequently undereducated and that they reach an end to their abilities early in the doctor-patient relationship. When this happens, they search for a good excuse to let go of us as patients, but without feeling they have abandoned us.

I would love to see a study of doctors done, asking their feelings on E. and whether or not they feel confident treating patients with it. I would also love it if these docs could be asked if they are aware of current treatment, proper first aid techniques for convulsions, etc.

I think the outcome of such a survey might be fascinating.

Shall We Play A Game?

2008-04-15T15:09:00.000-07:00

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?

Then, there is the list game: how many illnesses or conditions can you name for each letter of the alphabet...

The thing about these kinds of games that strikes me beyond their insensitivity is the constant reference to ill or disabled people as the social 'other'--- reinforcement of the them versus us status.

These games never work to make the players more sensitive or aware. These kinds of games never seem to offer any kind of inclusion. Instead, these games keep reminding all of us, collectively, that there are others whose lives are miserable because they are not like us.

Okay--- I have a new game: which would you rather lose control of, your consciousness or your bowels?

Thanks for playing!

See you next time!

Some Will Hate You Less Than Others...

2008-04-14T18:22:00.000-07:00

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.

The notion stayed with me a very long time.

When I was still very young, I used to wonder "Who will hate us?" and then "Who are the 'others' hated more by these people?"

My thinking was founded on the certain knowledge that I was beloved of God, equal with all human beings, and capable of bringing hope to anyone who would allow me in.

Where is the room, in this foundation, for "hate"? But, I was afforded several opportunities to engage "hate"--- one example stands out to me: while riding my bicycle along a mile stretch of road, in the homeward direction from school, a young fellow walked the other direction from me, and when we intersected, but just before I was to pass by him, he screwed up his face and spat upon me. I must say with all sincerity, there is no more direct connection between meaning and action than when one is spat on...

I can recall feeling flushed, angered, and I think I even yelled something inarticulate. That had never happened to me before. I certainly didn't know how to cope with it.

But that was then... here's a little bit from shelleytherepublican.com on the mentally challenged among us. She writes today, and is really filled with vitriol:

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.
They did not pretend that retards were ‘like us’ and worship them as liberals do.

Shelley adds:

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?

The Hardest Part of E.

2008-03-27T17:58:00.000-07:00

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!

This would indicate to me that public education has not reached enough folks, and so a better job needs to be done. What baffles me is the notion that folks have learned the Heimlich maneuver for a choking person, but they still don't know enough just to roll us to one side until we finish our seizure??? Or that it is not necessary to call paramedics for Every seizure, but only if they last longer than 10-15 minutes...

Trust is the hardest part of living with E.---or the lack of it!

(The Symbol to the right is a Chinese character for "Trust".) It represents

a goal, something to strive for.

Urge Ratification Now, for Our Protection!!!

2008-03-27T16:47:00.000-07:00

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.

Hiding on the 'Net: Hate Crimes Against Epileptics...

2008-03-26T17:51:00.000-07:00

I was startled when I looked up 'epilepsy' on You Tube, to discover much content designed to provoke seizures among those of us with E.

Then, when I checked my email from the Epilepsy Foundation of America (EFA) a few days back, one of those haters had sneaked in and posted (unsuccessfully) something else designed to cause seizures, complete with an embedded message: You Deserve a Seizure for your Postings.... when the EFA is successful tracking these anonymous fools down---they may be prosecuted for hate crimes, particularly if anyone reports they have been hurt by this content.

What kind of little twerps would do this kind of thing? I can imagine, sheltered in the shadows of the internet, these little pigs howling with laughter at the prospect of hundreds of epileptics suddenly seizing in unison, because of what they have created. They must really dig the power fantasy...

This just in: the EFA has discovered who you are, what you did, how you did it and have turned over the information. Now, you just have to wait for the knock on your door. (You left footprints!)

The notion that folks will take off after any disabled folk is sickening. It brings to mind the Nazi doctrine of "the useless eater", those disabled who do not deserve to live among the healthy---that somehow, we are only a drain on society, that we contribute nothing to our fellow man.

How is it okay for disabled Americans to be left out of the civil rights language used to protect all others??? Protected classes of human beings, of citizens, should be equal under the law---not excepted from it. Below is a comment on an opinion piece called "Too Big A Tent":

Re: "Too big a tent," editorial, Oct. 29

I was surprised and dismayed to read an editorial urging Congress to narrow the hate-crimes act to not include people with disabilities.

Greater inclusion of people with disabilities in American society has not been a painless process. To say there is no problem is to relegate people with disabilities to a second-class status in which bias-motivated crimes on the basis of disability are somehow more tolerable than those committed because of a person's race, ethnicity, national origin or religion.

Thirty-one states and the District of Columbia include people with disabilities under their hate-crimes statutes, but this is not enough. The federal government must send the message that hate crimes committed because of disability are unacceptable and give meaning and substance to this message through the act's provision of crucial resources to local law enforcement.

Curt Decker
Executive Director
National Disability Rights Network
Washington, DC

I have to agree with Mr. Decker. This needs to be a nation-wide law with teeth in it. It should also include language against "mercy killing", euthanasia and assisted suicide. Too many of us could be easily pressured into agreeing to relieve our families and loved ones' of the burden of us... And, not to put too fine a point on it, it should also include crimes of hate perpetrated on the internet, specifically against disabled groups, like our friends, with the clever scheme to invade the EFA chat groups. Hateful, yes. Successful, certainly not.

According to the Southern Poverty Law Center, hate groups in the United States have risen 48% since the year 2000. Lots of these folks like to take off after the disabled. It is important for all of us to support the Southern Poverty Law Center and become familiar with the work they do on all of our behalves.

Stay well, be careful and safe... even online!

Happy Easter to Everyone!

2008-03-23T14:36:00.000-07:00

A Question of Balance.

2008-03-19T16:05:00.001-07:00

It seems, the more medications I take to quiet my seizures, the less balanced I become.

I can’t count the numbers of bruises all over my body in any given month, from tipping into the edge of a cabinet or thwacking against some other hard surface.

And, it has always been so.

To the right is an artwork by Sean Brown,
titled Yoga Firefly, and it suggests the kind of physical balance I would like to achieve, but which seems to elude me. Unlike the subject of Brown's piece, I am far less in control of my balance, and it is not nor has it ever been a question of desire.

For me, as is true for so many of us who take drugs for E., the balance we hope for is one between function and seizure control: can we take the right amount of AEDs to quiet our seizures and yet have enough bodily control to be able to cross a room without catastrophe? I have to say, there are times when I feel I am at the very edge of that delicate edge, praying my fingernails will hold out long enough for me to retain the bit of balance I have achieved.

But, balance hasn't only to do with gait. There are also things like grip---ask my husband. Whenever I do the dishes, he worries. Any crash-like sound coming from the kitchen could be me, starring in yet another disaster. To date I can say that I have broken enough glassware for about half-a-million weddings. Yet, no one has wished me well or shouted congratulations to me.

A Scent of Angels

2008-03-18T15:56:00.001-07:00

First, comes the scent---the Angels are present.

Next comes the fall, and I feel a brushing of wings, growing stronger, more intense until my breath seems to fail me.

Then, comes the darkness.

When they are gone, I struggle. The darkness is like a weight, pressing heavily upon me, and I must fight to push it off of me, so that I may surface, and rejoin the world.

The One Who Loves Me touches my face and washes me with water, or is it tears?

I yearn, but cannot know until I am back among the living.

I have suffered a little death.

A little E.

Eduard Munch's "Anxiety" (1894)

2008-03-18T12:49:00.000-07:00

Epilepsy and the Problem of Anxiety...

2008-03-18T11:43:00.000-07:00

Anxiety is common to lots of folks. It isn't unusual for any of us to suffer from it, and in various ways. Still, for epileptics, like myself, anxiety can be a complication or symptom of our epilepsy, and it is something frequently misperceived by others.

Jerry Federspiel created this expressive graphic titled "Anxiety". I thought it it represented something common to the experience of many epilepsy experiences. Federspiel has a double degree in computer science and psychology from Wisconsin, and I am certain both areas of study have informed his imagery here.

According to Orrin Devinsky, M.D.:
Anxiety, panic, and phobic symptoms can occur in people with epilepsy, especially those with limbic epilepsy. Limbic epilepsy is seizure foci arising in limbic brain areas; limbic areas are regions in the temporal and frontal lobes, which are involved with memory and emotion (1–4). Anxiety disorders may be more frequent in patients with left than in those with right TLE (2).

Researchers surmise "up to 50-60% of patients with epilepsy may develop psychiatric complications, in particular depression, anxiety, and psychotic disorders."
They aslo readily admit difficulties and a lack of understanding of how best to treat these incidences when they do occur.

Anxiety is related to epilepsy in specific ways. Elana R. Pulver has written: "It can occur not only as a reaction to the diagnosis, but also as a symptom of the epilepsy, and, in some cases, as a side effect of seizure medicines. When considering a diagnosis of epilepsy, it is very important to distinguish it correctly from other disorders. Some people with high levels of anxiety can experience panic attacks, which are characterized by intense feelings of nervousness, fear, and the sudden appearance of bodily symptoms such as sweating, hyperventilation, accelerated heartbeat, and flushing of the skin. In some cases, panic attacks have been misdiagnosed as epilepsy, and epilepsy has even been misdiagnosed as panic attacks! Because these symptoms of anxiety can be present during a seizure, in many cases the two are hard to differentiate. In extreme cases, hyperventilation caused by anxiety can trigger a convulsion, which can further complicate the diagnosis. Also, because the panic attacks occur suddenly and without warning, they are extremely frightening; the person usually believes that they represent a serious medical condition. Because panic attacks and seizures can be so similar, it is important to use techniques such as MRI and EEG to differentiate between them".

And then there are the other instances, like Ms. Pulver points out, when E. is misdiagnosed as "panic attack" or "anxiety". Sometimes this happens because the differential diagnoses is difficult to make. Sometimes it happens because there are mitigating factors, e.g. cultural sentiments against a diagnoses of E., that color a diagnoses of E...

While I was in college, I knew a young man. Very intelligent, good guy. He went on a trip with the honors society and when he came home. he told us that he had some kind of event. He was alone, in a hallway of the hotel in which he was staying. He found himself waking up, on the floor and discovering that he had chipped his teeth. He couldn't say what had happened to him, but after submitting to his doctor, he came back to say he had been diagnosed with "anxiety". Hmmmmmm.

I suppose I could have been happy with that if he had not chipped his teeth. The chipped teeth suggested to me something more like a tonic-clonic or convulsive event. But, I am not the doctor...

In line with earlier reports, a recent paper, to be published in Journal of Anxiety Disorders (available online 13 June 2005) posits the existence of a subgroup of panic attacks with the clinical features of the epileptic aura, and so must be considered and diagnosed as simple partial seizures (SPSs) with a psychic content. In the paper, research is presented to support a hypothesis that panic attacks, when they have the same clinical signs as the epileptic consciousness, should be diagnosed as partial seizures with a psychic content.

After setting out the four clinical signs defining it (suddenness, automatic nature, great intensity and strangeness), the authors made an extensive review of the literature in search of scientific information to support the hypothesis, which reveals a wealth of concurring scientific evidence, at both the clinical and preclinical levels, to support the hypothesis presented in this paper. The authors conclude by saying that panic attacks observed clinically with the features of suddenness, strangeness, great intensity and automatic nature should be interpreted as SPSs. (http://www.medindia.net/news/view_news_main.asp?str=2&x=5388)

The last bit was especially helpful to me when I came across it. Now, when someone insinuates that my anxiety has nothing to do with my E., I can reply back that it well may be a part of the kinds of seizures I suffer. It isn't something external to my condition, but rather something integral to it.

1. Perini G, Mendius R. Depression and anxiety in complex partial seizures. J Nerv Ment Dis 1984;172:287–90.
2. Altshuler LL, Devinsky O, Post RM, Theodore W. Depression, anxiety and temporal lobe epilepsy: laterality of focus and symptomatology. Arch Neurol 1990;47:284–8.
3. Vazquez B, Devinsky O, Luciano D, Alper K, Perrine K. Juvenile myoclonic epilepsy: clinical features and factors related to misdiagnosis. J Epilepsy 1993;6:233–8.
4. Cutting S, Lauchheimer A, Barr W, Devinsky O. Adult-onset idiopathic generalized epilepsy: clinical and behavioral features. Epilepsia 2001;42:1395–8.

My Tonic-Clonic Experience

2008-03-15T22:33:00.000-07:00

This is the way I feel coming out from the blackness of a convulsion. I don't know who the artist is or I would offer credit and my sincerest thanks for graphically expressing something so esoteric and difficult to explain to those who ask or wonder about without asking.

The involuntary scream, the rolled back eyes, the sensation that I am under water, that I may not be able to break back into consciousness again...