Community Makes Us Stronger!

Socialization helps each of us cope. Epilepsy is a condition poorly understood or accepted by the general public.If we are going to change the perceptions others have of us and of our condition, then we have to be willing to work out. We have to be willing to share information, admit to others that we have this thing, and allow an opening for conversation to take place. Share what you know. Share your feelings, your experiences, your fears. Frustrations, triggers, flash-points, too. Each of these things will help add to another person's knowledge and understanding of E.

Be willing to reach out to someone else. I know I have appreciated it when others have reached out to me. Let me offer an example: an anonymous note I got about a factual error in a post of mine. If the person had included a name I could thank them properly. Even though I thought I had researched my piece well, I was apparently off the mark about a biographical detail in the life of Harry Laughlin. He was a eugenicist whom we can credit with making life a bit more difficult for all types of disabled. He was diagnosed with E. as an adult. I wrote that he had children, and my unknown friend, pointed out that this was not the case. I reexamined my work, revisited my research, and discovered that I Got It Wrong!!! So, rather than allowing me to continue to look foolish, my unknown benefactor took pity and gave me a word. Thank-you, very much, whoever you are.

Community. It is that thing that allows each of us to feel cared for and about. It affords us bravery and confidence. We have to engage it, instead of staying away from it.

Happy New Year and here's wishing each of you less frustration and many fewer seizures in 2008!

Support Epilepsy Awareness Month

November is E. Awareness Month

Did you know that the designation of November as National Epilepsy Awareness Month is 38 years old? I didn't. When I have mentioned that November is National Epilepsy Awareness Month to friends and strangers alike, they all say the same thing to me: "I didn't know that!"

Because they didn't know, they did not make donations, participate in multi-K runs, attend pancake breakfasts, or even wear the lavender ribbon that is supposed to designate such an awareness and support. I see yellow ribbons for the Support Our Troops effort, I see oceans of pink ribbons for Breast Cancer Awareness, so it isn't that people don't want to offer support for things they consider worthwhile.

The question I ask myself is: if the campaign to make the general public more aware of E. is a national effort, then why does it seem to be so impotent?

Our one, giant lobbying organization is funded and can aide us in our regional and local efforts at least one month of the year, can't they? Certainly, many of us have been made aware of Heart Disease, Good and Bad Cholesterol, High Blood Pressure, Alzheimer's; of HIV/AIDS, of Asthma, of Lyme's disease; of the dangers of the Hanta virus, Smoking, and even Prostate Cancer... so what about E.?

Why are both professionals and lay persons still so badly informed about a condition that affects millions of us daily?

Public consciousness raising could improve our lives greatly. If it were done correctly, a successful series of ads and activities could help release many of us from stigma, keep us employed, insured, in school, and raise many of us up in our local communities. So why are we still futzing with this, why aren't we becoming more successful at telling people about ourselves?

One big flaw in these campaigns seems to be that the programs designed to heighten an awareness of epilepsy are targeted towards persons who already have E.---trust me, these people are already aware of it.

It's only a suggestion that awareness programs be directed outward, toward the larger society, that is, if one wants the larger society to become cognizant of the condition and its details.

Maybe it's time to rethink placing our advocacy in the hands of a single organization.
Maybe they haven't done us any real good in 38 years...

Pity, As I Know It

I am no longer content accepting only pity from the non-disabled. Instead, I feel strongly that pity should be replaced with opportunity so all of us can function as a part of society, and not remain set apart from it. I know I am not alone.

To the right is a work by the artist Pierre Puvis de Chavannes, titled "Pity" (1887). It is an illustrative work because it points up an emotional component common to those who feel themselves pitied by others.

You may notice that the Pitier resembles Death in this painting, and I would suggest that this is not literal death, but a death that removes the living disabled from the company of others, from the fellowship and society to which he or she belongs.

Piety as a concept has been with men as long as his gods, and is not the exclusive mark of any religion or cult or sect. My own knowledge of this concept is a Christian one, certainly, but I am familiar with other, equally significant deconstructions of the term. A good example, is Socrates’ discourse on piety in Euthyphro.

As I came to understand it, if one seeks to offer pity or to be pious, one must be dutiful and try to acquire a sense of compassion, presumably for others. But why link these terms, pity and piety? I have to admit, connecting both words is the consequence of an academic accident on my part.

You see, in a quest to discover why Pitiers seem to feel so bitter, so let down, when their pity is refused, I looked to the origin of the word "pity" to see how its use might have been altered over the centuries. I was surprised to find it linked with "piety".

Apparently, until the 13th century, “pity" and "piety" were interchangeable, inextricably tied to one another. In the time between the 13th and 16th centuries, the word "pity" contained the notion of gratitude in its definition. It also contained the concepts of kindness and filial duty.

C.T. Onions: The Oxford Dictionary of English Etymology confirms that "pity [and] piety [were] not fully differentiated until the late 16th century" (p.679). (Of course, this one perspective on the English language usage of these words in no way represents a host of other understandings.)

People who pity the disabled have an expectation that we disabled should reciprocate their acquired sense of kindness with our own dutifully rendered gratitude.

My social observations of pity and piety stem from a lifetime of experience with these words as actions. To me, it looks as if those who offer the disabled pity enjoy a sense of personal gratification from making the act of pity. I think many also feel a sense of godliness from this act because they have extended some part of themselves toward an unfortunate individual. Simply put, when someone says to me "I pity you", that someone walks away feeling good about himself.

How does this kind of pity uplift me? How can these folks expect me, or any other disabled, to share their joyous well-being? Pity, which only uplifts the one who pities, and does nothing for the subject of his pity, cannot be pious. It is only selfish.

But, if the impulse to offer pity can act as a motivational force to correct social injustices, then pity may be a good thing. Without such motivation to act, pity is useless.

What Are Folks Afraid Of?

Stop Denying Epilepsy...for all of us!

There can be no more empowering, liberating act, than to fully accept yourself. So why do we keep E. secret?

Whenever I say aloud that I am epileptic, there are always individuals wanting to talk with me about it. Some say they know someone with it, others tell me they used to have it, and quite rarely, someone will reciprocally identify as a person with E..

I really began to realize how commonplace it is for persons with E. to deny this part of themselves, after I quit making my own denials.

Perhaps, like me, one's parents taught you not to speak of it to others. Or, maybe it was some reaction from another person that taught you to admit "once having it", but to conclude your admission with "...but it's gone now" in order to make certain they would accept you as an equal.

Nobody told me that to keep secret my condition might create psychological problems, in addition to my epilepsy. And, I am certain that few of us have been so educated about E. and the detrimental effects denial has on a person's psyche.

I feel just a little cheated by the medical community for this because they knew about epilepsy denial as a common phenomena since 1956. In that year, Drs. Donn Tippett and Irving Pine studied the psychiatric extremes of epilepsy denial. Their published study acknowledged the familiar, epilepsy denial, as common in their patient populations. They presented their findings at a meeting of the Ohio Psychiatric Association, then published them in the Journal of Psychosomatic Medicine; the article is titled "Denial Mechanisms in Masked Epilepsy" (1957).

Denial is a well-known ego-defense mechanism in psychiatry. When one makes use of this psychological mechanism, they do so because, as Tippett and Pine point out, "It serves the ego by keeping from consciousness what the environment and reality would consider unacceptable... It is a common experience that epileptic patients avoid detection of their seizures on a conscious level by concealment and even lying."

Tippett and Pine continue by saying it is not unusual for epilepsy patients to react to their diagnosis with strong feelings of disgust, fear, shame, guilt, horror, a sense of personal disfigurement and self-loathing. In a nutshell, these are learned and perceived responses: the lessons one learns, from the doctors who treat you, from the family who cares for you and from the society surrounding you. If those around you react poorly to your diagnosis, you may feel you have something to hide from the rest of the world.

Since the mid-1950's, researchers have written even more on this issue. Now, it isn't simply that epileptics want to control disclosure of their E. to others, it has become a further refined research question, seeking to know who denies E. most often.

Who are the most frequent deniers?

To date, I have not discovered specific studies to tell us whether women or men deny E. more frequently. (That does not mean they haven't been done.)

Instead, there are many generalized studies, that look at gender and the action of denial in illness, violence and addiction. They suggest that dependent individuals are most likely to deny. For some scientists, the reasonable conclusions from such data are that women probably deny most often.

But then there is research that says the opposite.

Focused on women, and their specific coping skills in the face of illness, these other studies suggest that women are less likely to deny illness than are men, affected by the same illness. For example, between men and women who experience a first heart attack, women are most likely to accept the diagnosis, while men are most likely to fluff it off as an anomaly, or something that will never happen to them again.

Anecdotally, if one goes by the things epileptics talk about online, both gender groups are forced to face the ubiquitous disclosure crisis. Who hasn't agonized whether or not to fill in the employment application fully, or to tell someone you just met that you have epilepsy? The lingering question for the person with E. is whether to keep E. secret or to tell everyone that you have it.

But not telling can make you do crazy things!

I can recall, for example, a woman I once knew. She told my aunt that she was getting married for the second time. But she didn't look happy about it, the way engaged people are expected to look. When my aunt congratulated her, she said "Yeah, thanks." So my aunt asked her what was bothering her, why wasn't she happier? The woman answered: "Well, I suppose things will be just fine, until I have a seizure..."

Puzzled, my aunt and the woman were quiet for a few minutes. Then my aunt spoke up: "Haven't you told him yet?"

"No" the woman replied. "I'll just wait and when he sees me seize, he'll probably want to divorce me---just like my first husband did."

"You mean you didn't tell your first husband either?" my aunt said.

"No---I could never seem to find the right time."

There is also the story of the young man I knew, who refused to tell anyone where he worked that he had epilepsy---even after he rammed the company car into a 50-year old pine tree. When asked what happened, he said "I was trying to avoid the other car!" Later, the police report concluded that the man had been alone on the road when the accident occurred.

And what is one to think of Chief Justice Roberts? Instead of acting as a agent for the Common Good, he allowed an entire profession to obfuscate on his behalf. Pitiful...

In the end, I have to say I find the act of disclosing my E. helpful and empowering to more than myself. If more of us would take the chance, speak out and stand up for ourselves, we might find that the misinformation currently circulating about epilepsy is diminished. When more of us speak up and stop denying E., we will all have one less thing to fear in our lives.

Risking the truth frees all of us.

I've Been Tagged!

Okay, here are the Rules to this particular game of tag:
1. Let others know who tagged you
2. Players start with 8 random facts about themselves
3. Those who are tagged should post these rules and their 8 random facts
4. Players should tag 8 other people and tell them they've been tagged.

I placed the Rules at the beginning because I didn't know how to play at first and I love games. However, I think I have a sort of inferiority complex, owing to my least favored status on the playground in elementary school, junior high school and high school. Both Seahorse (the Beauty Offensive) and Penny Richards (Disability Studies, Temple U.) have made me feel terrific because they said "I choose you".

Random Facts About Myself:

1. I am the self-declared world expert on redheads...one day, if I ever become a disciplined sort, I will write the book and it will be fabulous.

2. I am fascinated by statements of denial: I have a cousin in Mississippi who was born in Texas and grew up his entire life in California. He tells me when he passes away, not to mention the California part of his life---because he wants to be remembered as a Texan. Hmmm.

3. I love patchouli oil. Ever since my hippie days, I have been in love with this pungent parfum. I wear it very rarely, but it sparks my imagination...

4. I have proposed, since I was 12 years old, that I live to reach 100. Imagine the wonders one might observe along the way...

5. Lime green is my least favorite color, perhaps owing to the many attempts shop girls have made to put me into clothing of this hue. Just because my hair is red, does not mean I want to look like an American leprechaun.

6. I still believe one person can make a difference.

7. I love fairy tales and have been reading them since they were first read to me by a young Uncle of mine.

8. I am a folksinger. Protest songs, ballads, union organizing songs---you name it! I love the music, I love the folks who have made these expressions and believe it should be continued.

Well, these are my eight things, randomly stated. I choose Sadi Ranson-Polizzotti (Tant Mieux), Anthony Risser (Brainblog), Phillip (disabled-help.org), Rick O'Shea (DZ-015 - The Half-Arsed Blog Of RTE 2FM's Rick O'Shea), Emeriol (Living with Epilepsy), Joshua Kors (JoshuaKors.com), David (Growing Up With A Disability), and the ever-popular Goldfish (Diary of a Goldfish).

For lots of reasons, I choose each of you: perhaps because I want to know more of you, or it could be because I want others to know more of you, or because each of you has something witty or wonderful to add to this game of tag.

Play if you like, refuse if you would rather---just remember I wanted each of you on my team.

I See the Moon, Does the Moon See Me?

I can't tell you when I first knew for certain, but as long as I can remember, my personal symbol has been the moon. In my maternal line, acquiring a personal symbol is more usual than not. Four generations of us have sky symbols: mine is the moon, my mother's was a comet, her mother's was a lightening bolt, and her mother's was the North Star.

None of these women could recount the moment when they chose their symbol: they said it felt as if their symbols chose them. Perhaps they did.

For myself, I find it curious to both belong to the moon and to have E., since so much about epilepsy links to that soft and cyclical orb.

To the Greeks, Selene was Goddess of the Moon.
Any well-behaved and cultured Greek understood that you "got epilepsy" by offending Selene. In her anger at your offense, she would lash out and strike you.

Seleniazesthai is the Greek verb meaning to be struck with epilepsy, according to the New Schaff-Herzog Encyclopedia of Religious Knowledge (1910). One cure to undo Selene's pique was mistletoe, picked without using a sickle or blade, during the time the moon is smallest in the sky. The mistletoe must not touch the ground or it would be rendered useless against the "falling sickness", for it would have fallen itself.

The moon is routinely considered a female entity, owing to the monthly cycling of its phases. But, it would be a mistake not to mention that many cultures have regarded the moon as male. The moon of Babylon was male, and named Sin. And Sin had a direct connection with E.

As I understand it, one needed to be careful exiting one's house when the moon rose in the night sky. A minion of Sin might be waiting on the edge of the roof to pounce upon the unwary and if one was prey to such an attack, the residual evidence would be epilepsy.

Thus, it would be better not to be seen by the moon or his minion.

The connections between the moon and E. are not limited to ancient Babylon. Indeed, the magical and religious connections between the moon and illness can be located in a variety of human groups, across time and around the world.

Because it is true that many of us spring from culture groups that at one time or another made the connection between the moon and epilepsy, it is not unusual for us to encounter present-day individuals who still strongly argue for the moon's effect on persons with E.. Those who make such arguments are not limited to individuals with E. or their families. Health professionals, too, often believe in the moon's direct influence on the seizure patterns of their patients.

Senior Science Writer, Robert Roy Britt, in "Full Moon Not to Blame for Epileptic Seizures" explores the question with nationally known epilepsy specialist and researcher, Selim Benbadis, associate professor of neurology and neurosurgery at the University of South Florida's College of Medicine. "Patients were claiming their seizures were triggered or worsened by the Full Moon" and "even some health care professionals believe this, but it's never been scientifically tested" (Space.com, 26 May 2004).

Until now.

Dr. Benbadis and his colleagues analyzed 770 seizures, recorded over three years at Tampa General Hospital. They sorted these medical records into classifications: epileptic seizures and other types. Of the epileptic seizures, 152 occurred during the Moon's Last Quarter and 94 when the Moon was full. Britt quotes Dr. Benbadis on his recent findings, now published in the journal Epilepsy & Behavior:

Contrary to the myth, epileptic seizures are not more common during a Full Moon. In fact, we found the numbers of epileptic seizures were lowest during the Full Moon and highest in the Moon's Last Quarter... But, myths die hard---Some people still seem to like poetic, mysterious and irrational explanations for puzzling diseases like epilepsy.

Old time explanations and cures for E. will probably remain with us for a time. It is even possible to suggest that people will create new lore as we move toward the future. Until the E. community insists that everyone have accurate knowledge of our condition, people without good information about E. will use their own logic to make up explanations and treatments for us.

I just can't think of a time, historically, when that has been good for epileptics.

And Now For Some Top Ten Lists

Sometimes a little laugh can unite us. I wish it were my own idea to write the following lists, but it isn't. Instead, it was prompted at the invitation of David Gayes, Growing Up With A Disability, for the Disability Blog Carnival. The Carnival has been a unifying activity among lots of disabled folks and I hope you will read, via David's blog, some of what is written there. (You can double-click the title of this post to get to his blog...)

The most recent "theme" for the Carnival has to do with Top Ten lists. Both of mine relate to E., of course, and I truely hope you enjoy them. The first has to do with the things folks have said to me over the years about my epilepsy and about me. See how many of these you can relate to:

Top Ten Dumbest Things People Have Said to Me about My Epilepsy:

10. I can’t catch this from you, can I?

9. I hope you never have a child---what if you were holding the baby and had a seizure? You could drop it...

8. You’ll outgrow it.

7. Epilepsy’s not so bad---at least you can’t die from it!

6. OK---so you have epilepsy: you take your pills and it goes away!

5. You have epilepsy so you must be retarded.

4. Don’t worry about having a fit---I’ll just shove something between your teeth and you will be fine!

3. You can’t work here: you’d frighten the others too badly if you had a fit!

2. I can’t rent to you---I'd love to if it were just up to me, but if I do my insurance rates would go up if you had a fit!

1. Of course epilepsy has nothing to do with willpower---but you could try a little harder to stop seizing, couldn’t you?

But the general population isn't the whole source for dumb or arrogant commentary on E.---if I had a nickel for every time a doctor or nurse made a dumb comment, I'd be independently wealthy by now. But, here are ten of them:

The Top Ten Dumbest Things Doctors Have Said About My Epilepsy:

10. You’ll probably outgrow it---others have.

9. Your mother was likely frightened by something while she was pregnant with you.

8. Are you Catholic? An exorcism might work.

7. We’ll just keep switching your pills until we find the right ones for you to take.

6. Too much television is causing your seizures.

5. I’ve read your test results and they say it’s epilepsy---but I don’t think that’s what’s causing your seizures.

4. You’re still seizing? Are you sure you’re taking all your pills, everyday?

3. You’re twenty pounds too heavy for a child your age---fat is what’s causing your seizures.

2. You probably have an allergy to something and that’s what’s causing you to seize so much.

1. Your hair is too heavy for your head---cut it off short, and the seizing will stop!

Check out David Gayes' blog: Growing Up With A Disability. The Top Ten Carnival begins August 23rd!
I can hardly wait to read some of the other lists as they appear!

The Dead of Night

There is an apprehension created by an active mind in the dead of night: a surety of one’s power to grasp the meanings and significance of things. One may experience a genuine sense of beneficent resignation to the past and acceptance of the future, in spite of any unrelenting anxieties or expectations.

It is the time my thoughts are the most active, to be sure.

At that late, silent time, I feel the doors of memory open easily, even though they may be tightly shut at other times. These are the hours I feel I understand myself in relationship to my hopes and aspirations: I see the juxtaposition between who I was once and who I have become, and I am contented by that vision.

One is free to consider all sorts of things in the dead of night and give no special weight to any one of them. It can be a time for unrestrained, intellectual play and it sometimes yields useful perspective on important questions like "why am I awake at four a.m.?"

Am I depressed about something? Is this insomnia? Am I suicidal?

While I have never seen a discussion about how long one has to be awake in the night to qualify as an insomniac (I am awake 15-45 minutes at a time, rather than for hours); I suppose it could be a possible classification for my sleepless behavior. My thoughts at that hour do seem to be directed toward problem solving: can I find a snack without waking my spouse?

Still, I can't say that I ever consider killing myself in that short, snack-seeking period. I guess I am just too preoccupied with hunting and gathering. But, I am curious about this wakefulness, so I read.

I read scientific writing on the connection between E. and depression. I find, inevitably, these papers address E. and depression in terms of comparative suicide rates between the majority population and the E. population. Conclusions are consistently drawn to show persons with E. are at least 5 times more likely to suicide than the majority.

But these conclusions seem flawed.

Folks of the E. community will chat about everything, and their most personal and private issues can become threads for conversation in cyberspace. Insomnia is certainly a well-explored topic. But I have yet to chat, email, etc., with members of our community who want to discuss suicide or thoughts of it. For a group researchers say are five times more interested in suicide than the general population, our community is strangely closed-mouth on the subject.

A reluctance to discuss suicide should come as no real surprise to anyone though. It may be because of a kind of confusion over what draws one to its consideration, as well as to the act itself.

Our community is all too practiced in the art of selective disclosure. We are experienced with the potential consequences to us as individuals if we make certain statements aloud. So dismissing suicide as a possible topic for conversation seems reasonable, even prudent.

Just what would reactions be to us if we began to fling personal admissions concerning thoughts of suicide about? How would our families react? Our caregivers? Wouldn't it change how people come to see us and our condition? What kinds of repercussions might we experience?

Surely the majority population feels a similar discomfort.

My own discomfort with the subject of suicide has less to do with any personal thoughts about it and more to do with the fact that it is more and more often attributed as a feature of epilepsy. A new symptom. It makes me question how reliable such studies really are. Are persons with epilepsy inclined to kill themselves at rates five times greater than the national average? If we are, shouldn't we address this? I'll take a stab at it.

As I see it, one may divide those who contemplate and/or act in favor of suicide into three groups: the compulsive, the depressives and the morbid thinkers.

The compulsives are mentally ill in a profound way. Depressives can be assisted with interventions of talk and drug therapies. Morbid thinkers, I believe, include many persons with E. because we are socially removed and used to keeping profound secrets from others about our health and well-being; and we take the kinds of powerful drugs that increase our vulnerability to such thoughts.

I read a clever description of the E. experience once:
seizure, side-effects, stigma. This sums up neatly the three major areas of difficulty people with E. have to work with every day. Those of us with E., recognize the meaning of that slogan immediately; those outside our community, don't.

I take drugs with my E. and the drugs reduce the severity of my seizures; they do not eliminate them. So I cope with my seizures. I also cope with drug side effects. These side effects, apparently, will also never go away. And I live with stigma that makes people afraid of me. So I am determined to push back against things that will in any way disinform others about epilepsy or those of us with it.

The artifacts of prescriptive living intersect in some strange ways. One common way acts to give many of us insomnia. Because control over E. heavily depends on finding sufficient rest to help avoid seizing, E. becomes more difficult to control and certainly less reasonable to bear, when insomnia is in play.

Pharmacy Times states:

Statistical analysis of the inpatient study data demonstrated that major depressive episode (MDE), generalized anxiety disorder, and suicide risk were significantly associated with insomnia... Epidemiologic studies have linked insomnia, nightmares, and sleep insufficiency with an elevated risk of suicide... (June, 2006).

Drug-induced insomnia may have the effect of rendering us vulnerable to an elevated suicide risk. Isn't it logical to think that if we are suicidally inclined, that it may be a drug-induced state, and not necessarily a new symptom?

Certainly, the drugs we use to help us with E. are important to us and have improved many of our lives. The scientific community needs to more openly distinguish between resident suicidal, depressive or insomnial tendencies and those that are drug-induced. If not, persons with E. will endure yet another layer of stigma, and I'd say our burden is already heavy enough.

When It Comes To E., Do We Really Support Our Troops?

Traumatic brain injury (TBI) has been identified as the"signature injury" of the current war in Afghanistan and Iraq. All one need do is consider the number of blast injuries reported daily in the news, and an easy agreement can be reached with this statement.

But, it has a more significant implication.

On May 23, 2007, neurologist Dr. John Booss testified before the Senate Committee on Veteran's Affairs . Dr. Booss remarked on the pervasiveness of epilepsy among returning war veterans who suffered blast injury: "TBI...involves neurological, cognitive and behavioral changes which are complex, varied, diverse and may change in severity or develop over time... Post-traumatic epilepsy is going to be a significant long-term consequence of TBI. ...As neurologists, we believe that the rate of epilepsy from blast TBI will ...be high."

Booss went on to tell the Committee that even though official statistical outcomes had not yet been generated for the current wars in either Afghanistan or Iraq, the numbers of troops who developed epilepsy as a consequence of the Vietnam experience ran at 53% within 15 years after service.

Vietnam veterans were 25 times more likely to develop E. than the general population.

In March of this year, Dr. Marc Dicter, professor of neurology and pharmacology at the University of Pennsylvania, suggested that current "Government reports estimate more than 30,000 troops have been injured in the 4-year-old war in Iraq, and the two major wounds have been limb loss and traumatic brain injury. Veterans groups put the number of injured much higher." Dichter continued, saying "Severe brain trauma can trigger epilepsy in as many as 30 percent to 50 percent of the brain-injured soldiers" (Newsday, 3/29/07).

But, even though neurologists are telling lawmakers that treatment will be required for veterans long after their service has ended, it seems the Armed Services and the Veteran's Administration are working at cross-purposes: in an attempt to save about $8 billion a year, vets are being honorably discharged with a pre-existing "personality disorder". They find themselves with no benefits, no military pension and a bill from the VA for their treatment of war wounds.

These troops are kicked to the curb with nothing after giving everything.

Joshua Kors, reporting for The Nation magazine, writes the story of Jon Town, winner of a Purple Heart for his service in Iraq. His doctor told him to agree to the "personality disorder" diagnosis because it would give him an honorable discharge. What he was never told was that he would lose all of his benefits, his right of appeal, and that he would wind up owing the VA.

Kors writes, "In the Army's separations manual it's called Regulation 635-200, Chapter 5-13: "Separation Because of Personality Disorder." It's an alluring choice for a cash-strapped military because enacting it is quick and cheap. The Department of Veterans Affairs doesn't have to provide medical care to soldiers dismissed with personality disorder. That's because under Chapter 5-13, personality disorder is a pre-existing condition" (The Nation, April 9, 2007).

According to Kors, the services have discharged over 8,000 returning, wounded, often decorated Iraq and Afghanistan vets in this manner, and Town is simply a member of that cohort.

While the link between these dismissals may seem like a stretch, one might take into consideration the notion that these vets, some of whom are experiencing odd behavior, difficulty sleeping, rage, emotional inconsistencies, black-out, memory difficulties and more are among those whose conditions may ripen into E. over time. They are also among those dismissed under this specious Chapter 5-13 provision.

So, the question remains: when it comes to epilepsy, do we really support our troops or does it just make us feel better when we say we do.

Eat One Hedgehog and Call Me in the Morning...

The formulary of drugs in use against E. is growing. With it, the discomforts, side effects and dangers. Someone I know once said that I “...take medication strong enough to drop a horse” and it feels that way, often. It's no wonder some of us would give our right hoof for a good alternative.

Among the quirky cures suggested (and rejected) by me, are: hot mineral baths, colonics, yoga, fasting, Black Strap molasses, Deadly Nightshade, ginger and licorice roots, mistletoe, magnets, mud baths and chiropractic adjustments. I am sure each suggestion has something to recommend it, but they are not what I had in mind. There has to be something else. A look at the past efforts of physicians and healers might suggest alternative therapies.

So, let us look to Rome.

Pliny the Elder was an accomplished man: a warrior, writer and, appointed by Emperor Vespasian, Prefect of Rome. He died as Prefect, and his death was extraordinary. When the volcano, Vesuvius, erupted and eventually smothered Pompeii and Herculaneum, Pliny the Elder set sail with the Roman fleet to observe and assist. Pliny the Younger reports that his uncle died from inhaling poisonous gases, while he stood on the deck of his ship in the Bay of Naples.

One of his enduring accomplishments is his encyclopedia of all the knowledge of his day. He wrote and compiled the 160-volume set and included medicinal treatments and cures for the most commonly encountered ailments of the time. Epilepsy was just such an ailment, and merited inclusion. According, to Pliny the Elder (c. 79 A.D.): "If lion fat is added, a slight taste cures epilepsy, provided that those who have taken it, at once, aid its digestion by running".

If you have no lion fat, Pliny directed: "A camel's brain, dried and taken in vinegar, cures epilepsy, as does the gall, taken with honey...". So, it seems you had a choice in Pliny's day over what animal you would use to effect a cure from E.: lion or camel.

In Witches, Druids and King Arthur, R. Hutton writes of a researcher "...collecting information on folk medicine in the border counties of England and Wales" who was startled at "the remedies confidently reported..." : a "...cooked hedgehog cures epilepsy." Among the Scottish Celts, "A magical cure for epilepsy was to bury a black [rooster] at the spot where the patient had his last fit".

(I vote "no" on the hedgehog treatment.)

In the United States, nearly 2,000 years after the death of Pliny the Elder, John George Hohman (1819), Reading, Berks County, Pennsylvania, published a little book of charms and cures against all sorts of things, from thievery, to worms in horses, to human ailing. He specifies that to cure epilepsy, one must "take a turtle dove, cut its throat, and let the person afflicted with epilepsy drink the blood." My grandfather's people were from neighboring Lancaster County, Pennsylvania, and I heard about this cure growing up, but no one ever tried it on me.

In the Andes mountains south of Ecuador, a cure for E. is still hunted, much to the chagrin of the World Wildlife Fund: the mountain tapir.

Craig Downer is a friend of the mountain tapir, and if you met him he could most probably tell you anything you would like to know: how the mountain tapir lives, what it eats, who its friends are. But there is no indication, in what Downer writes, that he has a care for the humans of the same territory. He has apparently never even learned the names of their tribes. Downer has a web site where this description can be found:
"Indians will eat or sell the meat, and often use or sell the hooves and snout for folk medicine. It is believed that these provide cures for epilepsy and heart disease." (http://www.tapirback.com/tapirgal/mountain/poaching.htm)

Admittedly, wild game epilepsy cures are less subtle than are the herbal. Taking a cup of steeped flowers, leaves or roots is less dramatic than either blood-drinking or eating BBQ hedgehog ribs. But if one considers the time spent acquiring a wild animal, preparing it and then administering it to another person, one may conclude:
the value of these sorts of cures is as dear as the affliction is distressing.

Some are willing to try anything to rid themselves of E...others have been willing to try what they have.

Feeling E.

Once I made the decision to disclose my E. to everybody, I immediately ran into a barrier. It wasn't language, exactly, it was more an absence of language.

The initial reaction to telling someone I am epileptic never seems to vary: people offer me pity, then they want to know how epilepsy feels. They say things like: "I just can't imagine how terrible it must be for you" or "You poor thing! You'll never have a normal life, will you!"; next comes the inevitable pause, and they continue by asking me: "How does it feel when you...have one?"

Most people seem to have one particular kind of seizure in mind and this is the gold standard, what many people take E. to be. I have known folks who believe E. "isn't so bad" if you don't have "the fits" and I have been to family doctors and neurologists who firmly believe if you don’t have convulsions, then you don’t have epilepsy.

The first thing I tell those who ask is: I don't know how a convulsion feels. I am unconscious when they happen. I have never seen myself seize, nor have I seen anyone else seize. It’s this kind of answer that disappoints. Suddenly, they become disinterested in the whole thing, and in me. Why? Because they want to know what convulsive E. feels like and they really dislike the sense that they have been put off from finding out.

Some have said that a convulsion looks painful. So perhaps this is the root of the question: they want to know if we suffer pain with seizing.

I try to answer the question each time it is asked, but I don't know if I am making any real progress describing my experiences clearly. I'm sure I sound a little addled when I try to explain the subtleties of the run up to a seizure: afterall, it isn’t like describing a bad cold or even a heart attack. My intentions are good, but I always explain much more than they want to know about. I tell them that not every seizure is epilepsy, nor is it a convulsion.

Though the question of how we feel epilepsy is a simplistic one, it can be viewed as an opening in the door between our own hiding places and the rest of the world. "What does E. feel like?" is an overture toward understanding, even if it smacks of sensationalism.

Our problem is learning to define ourselves to others, to distinguish the individual from the overarching descriptions of E.

There are so many variations, so many types and kinds of epilepsy, and so much disinformation about E., that it becomes a difficult question to give an answer to. Each of us experiences E. in so many ways: from confusion and staring to rage or anger to that most dramatic of expressions, unconsciousness.

And each person who asks the question of us comes to it with their own preconceived notions.

How I feel about E. and how E. feels, are distinct questions whose answers are bound to our inarticulate, experiential Self. For generations, none of us has felt an obligation to reach outward to society, to try to make ourselves understood by them. Socialization, for persons with E. has been discouraged, as has community building.

Today, because we want to be more a part of the world, to have society respect us, we have discovered a need to find the language with which to identify ourselves and our experiences to others.

Autonomy, Agency, Me & E.

As one with E., have I authority and control over my own life? Have I autonomy: can I make decisions that reflect my moral code or my perceived reason for being? Do I retain agency: the authority to act for myself?

I ask these questions outright because there are those who believe that we persons with E. must not have charge of ourselves. They feel we may not act for ourselves, nor should we be allowed to exercise authority or control over our lives. Some believe persons with E. to be thoroughly discredited human beings, and they express these feelings openly.

An artifact of this point of view, characteristically experienced by persons with E., is social disintegration. It means a loss of unity or cohesion, and in the case of an individual, it can mean the loss of her accustomed rank, status, or prestige.

Social disintegration often takes place once E. has been disclosed. But it also takes place when someone witnesses our seizure activity and is “creeped out” by it. Suddenly, an individual loses status within her family, her workplace, her community. Where once her actions were admired, they become scrutinized; though her decisions were trusted, they are now suspected. She loses responsibility for important and unimportant things.

But the most distressing and frustrating thing she can lose authority and control over is her life story. A significant element of individual identity formation is control of one’s personal story. Of greater consequence is a sense of it's ownership. Ownership is expressed as the individual’s ability to tell her story to others, in her own manner, without hinderance. When a person is stigmatized by disability, ownership of her biography becomes threatened, and along with it, her sense of Self.

Inaccuracies and distortions are commonplace in the telling of a disabled person’s biography. Family members, spouses, caregivers and physicians frequently offer biographical information in the presence of the disabled, replete with errors. When they object or offer amendments to their own histories, the disabled are commonly rebuked and told they are mistaken, that their comments are unimportant, or that their memory of past events is faulty.

This sort of interplay cues the listener to draw a conclusion: disability has rendered the individual incapable and dependent, and so ownership of her story is void and becomes the property of its teller. Evidence of such supposition comes quickly, usually with the listener’s first question and who is addressed: the storyteller or its subject.

Whom the listener addresses is important: his action affirms or denies the agency of the disabled. It accepts or rejects her equality.

Like many of us, I have suffered the indignities of biographical distortion, and have had it explained to me after the fact that the storyteller knew it was inaccurate, but that it was "for my own good" in some way. Usually, "my own good" referred to a desire on the part of a family member to ensure that the doctor would take me seriously as a patient, and give me his unstinting attention.

My life story is important only to me and I feel secure in my agency. As an adult, I entrust the telling of my story to only one individual, apart from myself: my husband. He, better than most, understands the seminal nature of my personal tale. With a doctorate in folklore and mythology, his sensitivity to this crucial aspect of my life, is astonishing. But his is a rare outlook.

Unfortunately for many of us with disabilities, and particularly for those of us with E., the sensitivities of our helpers are not often keen. They become emotionally and intellectually charged with the notion that in order to protect us, they must diminish us and so often act against our most essential Self interests.

In 2003, Marta Russell wrote a commentary, "Nothing About Us Without Us: Human Rights and Disability":
"...it remains the case that impairments are viewed as abnormalities and people who have them become devalued objects of the medical and social services establishment… the medical model persists and ignorance of the social model of disablement dominates. The social model emphasizes that institutions...impose "disability" upon those who have impairments by segregating and excluding them from the rights others enjoy."

She cites proposed language to a United Nations Disabled Peoples' Bill of Rights (which I am excerpting here). It offers insight into the widespread habit among the non disabled of disenfranchising us. It includes assertions that disabled persons must have the right to: "...personal integrity, freedom from... abuse by caregivers; to bodily and psychic integrity, including autonomy in decision-making...".

For generations, the E. community has been cocooned inside the "personal tragedy" model that suggests our epilepsy is sad, but individualized. We have been silent, reclusive, and at the mercy of the medical establishment. Coming out socially, even to speak amongst ourselves about our disability, has been a brave move for us to have made.

In time, we will find the means to step out more confidently, and perhaps more assertively. For now, we must be aware of the progress we have made and tuned into the possibilities we share for our collective future.

Epilepticus sic curabitur

The business of "curing epilepsy" by brain surgery is booming.

Owing to this very sexy, surgical practice, government and private donations have risen to unprecedented levels; a new sub-specialty of neurology has been created; pharmaceutical companies have worked overtime to deliver new drug therapies, and epilepsy research thrives.

But one must query whether a heightened technological approach to brain surgery really represents progress against epilepsy. If we look backwards a little, we may gain some unexpected perspective.

This image is titled Epilepticus sic curabitur ('The way to cure an epileptic'), from the Sloane Manuscript collection of medical manuscripts, 12th century, British Museum, London.

It represents what you think it represents: brain surgery. In this case, trepanation (opening the skull) and cauterization. Seems as if brain surgery to cure epilepsy is nothing new.

There were mystical, superstitious reasons for trepanation operations to be performed: it was thought that opening the skull cap would cause the demons of the sickness, poisonous gases or disease-causing juices to escape.

Dr. John R. Mangiardi and William Howard Kane,"Pre-Columbian Brain Surgery", say successful trepanation has taken place as far back in human time as 7,000 B.C. .

Ancient Greeks, Romans, Egyptians, British bog men, neolithic Frenchmen, and hosts of others around the globe, would trephine the skull of their patients to cure a head wound, or as a way to cure epilepsy. The urbanites of the New World carried it out with stunning success rates. We know all of this because we have archaeological evidence from human groups showing that patients received this kind of care and then lived out their lives, instead of dying from the practice.

Trepanation gained cult status in the late 20th century when it became touted as a kind of do-it-yourself cure for social angst of all kinds. Contemporary trepanists believe that boring a hole into one's skull makes them happier, more enlightened beings. Male trepanists frequently believe that a hole in the head will keep them young and vital.

Sounds like 12th century thinking to me.

Before I conclude, let me tell you a story...One of my very favorites, whether urban myth or true, is the tale of a man, newly diagnosed with epilepsy. He acquired a head injury from an ordinary car accident and the consequence was E. Frustrated by the cruel impact his new condition has made on his life, the man determines to see if he is a surgical candidate. Sure enough, he is!

He remains steadfast in his resolve, even when told half of his brain will need to be removed. "Whatever it takes to rid me of my seizures!" the man says.

So, the man has surgery to remove the section of his brain causing his epilepsy. His surgery is a complete success, he is rehabilitated, and his seizures vanish. He is a new man. But, five years later, the man is a passenger in another car and suffers a second head injury from an accident. Again, the consequence of his injury results in epilepsy...and this time the man is informed he hasn't enough of a brain left to make him a surgical candidate...

For those who have made the decision in favor of a surgical remedy to their epilepsy, my admiration is sincere. Unlike you, this is not a decision I will ever make: I like my skull intact, my brain sealed off from the air. I neither seek this kind of "cure" at the hands of contemporary surgeons, nor am I convinced of any variation of trepannist philosophy.

But, in its social and cultural contexts, I find an examination of brain surgery offers an interesting view of human endeavor.

Blogging Against Disablism, Ableism, Disability Discrimination

(Blogging Against Disablism can be located by clicking the link to Diary of a Goldfish.)

The language we use around disability and discrimination varies widely, and talking about language is a very important part of understanding the way that disabled people are perceived by society... Differences may include the way that disabled people are described; as disabled people, people with disabilities, the disabled, etc.; as well as the very word for the discrimination we experience. Ableism or Ablism is the term more commonly used in the United States and thus more prevalent on the Internet as a whole. Then there's the simple and perhaps most easily understood term of Disability Discrimination... (from Diary of a Goldfish).

That little Goldfish has it right: language is key to the most significant aspect of our lives as humans, identity. Take away the right one has to choose identifiers for herself and she becomes dispossessed of selfhood. Words are not just words: they carry embedded data that serve to cue others' responses.

Put the wrong name to a thing and the meaning of the object comes into question, not the misuse of the word. So, one might say that a rose unnamed would smell as sweet, but a rose named a dandelion would never be smelled at all.

I am epileptic. Regardless of the ways others describe themselves, I am Epileptic. My life and thoughts are entwined with E. and so the one cannot be stripped away from the other. If I am to identify as a whole and complete Being, I must and do accept my manifested self as Epileptic. It is not a misused term, cry for pity, statement of heroism, bravery or courageous act.
It is an expression of my totality.

I fight against disablism by pushing back against it, by choosing how I will be identified to others. I say "I am epileptic" aloud so that it is remembered along with my name and my face. I keep my epilepsy from becoming a weaponized insult by owning it.

Witholding or mitigating how I may use the term relative to myself serves others, perhaps, but does not serve me. I am not a bisected sentience and I am unwilling to infantilize myself by allowing others to determine for me how I shall be called.

But like so many things, people work against self determination in a number of ways. First, one's use of self identifiers is called into question: "well, you are much more than just that"; then corrected: "you mean a person who happens to have epilepsy, don't you?"; and then turned inside out: "Honey, you shouldn't keep bringing it up all the time. If you just don't say anything, no one will ever know you have this terrible disease."

It can be tough to resist the dark side, especially when it comes at you wearing the faces of those you love, like your wrinkled little blue haired auntie. When it does, I just take a deep breath and remember: I'm no dandelion!
I am a flower with a name: I Am Epileptic!

Wynken, Blynken and Nod

Guilt

Guilt connects deep inside of us at that vague junction between an action taken and an action withheld. A core understanding of E. is the recognition that as persons with it, we cannot control the actions of our seizures with certainty. Epileptics and their families learn how to keep silent about the condition, preferring not to speak too loudly about it because to do so might engender more problems than support. In that silence we quietly learn to devalue ourselves. We learn to be guilty.

There is little social history we can lean on to make us feel more comfortable. We can become fixed on our own relationship to epilepsy and can spend huge amounts of time and energy on it. Rarely have any of us seen ourselves seize, but many of us have experienced the aftermath of a seizure’s power and the residual effect it can have on those around us.

In relationships, we suspect we are burdensome, or that we create trouble just by being in the company of people. We go to doctors, we search out well-known epilepsy lobbying sites on the internet, and we read the statistics for diminished marriage rates among persons with E…

These data make it seem that persons with E. are less-than-desirable partners. When we wonder about the future and if we will be able to enjoy the finer things life has to offer: love, marriage, etc., we feel as if we are engaging in a fantasy. This becomes especially true once we become familiar with the statistics on quality of life issues.

Love might seem destined to elude us, but guilt never seems to.

Guilt is an intransigent emotional artifact of my own upbringing. I can’t seem to shake the need to say, “I’m sorry”. Even now, as a married woman with E., I find myself blurting out this phrase, or reacting as though I have done something to be ashamed of, even though I have done nothing. Because he loves me and accepts my E. as a feature of our daily life, I have come to realize that my “guilt” is a learned response.

I have, in the depths of post-ictal depression, said that my husband might be better off without me. But I have been shocked to discover this response was neither original nor solely my own. It comes from the mouths of others with E., as well:

“I have had epilepsy for…years and have sometimes felt my spouse would be better off without me....”

“(My husband) told me today that he is not happy and doesn't think our marriage will last. He thinks I will be better off without him…”

“…doing a lot of thinking about whether this relationship was good for either one of us…maybe she’d just be better off without me…”

We know, but can do nothing about, the odd components that are a part of the E. experience: medication side effects, behavioral problems that come before, during or after a seizure, depression, etc.

In the physical world, support systems for E. are fragmented and far-flung. Since the 1990’s, the web has become a kind of support system, because in cyberia, one may find some relief among peers.

Via list serves, blogs, chat rooms, and email exchanges we have discovered a way out of isolation. We have discovered a means with which to write future social history for ourselves. And perhaps a way to learn to value ourselves for who we are, without the guilt.

Epilepsy Heroes & Self-Loathers

People have been sharing the names and stories of the disability heroes of E. all my life. It is always hoped by family, teachers and others that the person with E. will come to feel stronger and more capable knowing about them. These famous and historical persons with epilepsy are supposed to act as role models for one's personal success.

For my own part, I can't say I feel better about myself knowing there have been famous or historical persons with E., but I do find reading about them as interesting as their works.


Of the ancients, Julius Caesar and Socrates are presented most frequently. Napoleon Bonaparte is often pointed out, but unfortunately, the only lesson I took away from Napoleon's story was that his E. betrayed him in the end, at Waterloo.


I liked writers with E. much better.
Fyodor Dostoevsky filled my adolescent hours with great drama;

Edgar Allen Poe, entertained me with horror stories;


Count Leo Tolstoy made me cry.



If I read Alice in Wonderland or Alice Through the Looking Glass with the understanding that Carroll shared Temporal Lobe Epilepsy with Dostoevsky and me, I might have been more patient. (I never really felt 'at home' with Alice, either in Wonderland or Through the Looking Glass). The reasons for my discomfort with his tales of Alice's journeys had everything to do with my own recognition of the seizure process in myself. When I learned recently about Carroll's temporal lobe E., I became more comfortable with him. Never certain why he shaped Alice's world the way he did, it makes sense to me now.

Dr. Steven Schacter says Carroll describes "perfectly" the sensation many temporal lobe epileptics experience when he wrote about Alice's fall down the rabbit hole. I wasn't aware of Dr. Schacter's personal experience with E., temporal lobe or otherwise, but I'll keep it in mind the next time I take that same trip.

Mentioning famous and historical persons is supposed to bolster the idea that one can become whatever one chooses to become. A disabling condition, such as E., should not be the damper to an individual's future as a human being or a citizen.

It might also be relevant to point out that these same lists of disability heroes are just as much for the encouragement of parents and caregivers. They act to stave off a creeping sense of failure and despair one can feel toward a condition such as E.. Disability heroes are encouraging for each of us, so it should come as no real surprise to note that at many disability web sites, you can find seemingly endless lists of them.

But the presentation of a disability hero makes some of us wonder about his opposite. To discover the opposite dimension of the disability hero is to find the disabled self-loather. The search is like turning over some kind of rock to find a nest of untouchable, slimy beings. It is an unexpected discovery.

The self-loather is one who hates himself utterly and those like him. This creature strives as mightily as the disabled hero strives, to make known his agenda. There are self-loathers in families: the ones who make life more difficult than it needs to be for their epileptic off-spring. No one ever hears about these folks.

Harry H. Laughlin was an Epileptic Self-Loather.

According to Alex Wellerstein:

Harry Hamilton Laughlin (1880-1943) was the director of the Eugenics Record Office at Cold Spring Harbor, New York, from its founding in 1910 to its closing in 1939, and one of the most influential advocates of eugenics in the United States in the twentieth century. Aside from his work on immigration, which helped lead to the passing of the Immigration Restriction Act of 1924, Laughlin was also an influential developer of U.S. compulsory sterilization policy.

Laughlin published a copy of his "Model Eugenical Sterilization Law" as a template, which was carefully crafted to be both constitutional and heavily used by the legislatures. One state law derived from this model was passed by Virginia in 1924, then found constitutional by the U.S. Supreme Court in Buck v. Bell, 1927.

Buck v. Bell opened the floodgates for state lawmakers: its effect on society was to increase both the passage of sterilization laws and the practice of eugenical sterilization in the United States that would last through the period of World War II and beyond (http://www.people.fas.harvard.edu/).

Laughlin's ideas about compulsory sterilization were specific, listing the classes of persons to whom the law should be applied. One class specified in Laughlin's model law were epileptics. Harry Hamilton Laughlin was an epileptic, suitable for sterilization under his own law.

Harry Laughlin worked really hard to separate himself from the rest---wonder what all of that diligence and intellect could have done if he had simply chosen a more heroic path?