To Bell the Cat...

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...

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.?

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?

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...

            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?

 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?

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...

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.

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!!!

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...

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!

A Question of Balance.

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

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)

Epilepsy and the Problem of Anxiety...

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

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...

SUDEP

I have been epileptic 52 years now. All along the way, I have suffered from disability bigotry from a wide variety of folks.

Bigot is often used as a pejorative term against a person who is obstinately devoted to prejudices even when these views are challenged or proven to be false or not universally applicable or acceptable.

I suppose the most difficult bigotry to accept is physician bigotry. To my way of thinking, epilepsy seems to make doctors with prejudice appear from nowhere!

My own GP believes E. to be a fairly innocucous malady. She has said to me, more than once, that at "least it isn't something that can kill you", so why worry about it?

Sudden Unexpected Death in Epilepsy, or SUDEP is a term used when a person with epilepsy suddenly dies and the reason for the death is not known. The cause of SUDEP is unknown. Post mortem examination usually reveals no abnormalities in victims.

Of those who die from SUDEP, it is most common in people who have generalised tonic-clonic seizures, especially in young adults. The most important 'risk factors' seems to be poor seizure control, and seizures occurring during sleep.

SUDEP is relatively uncommon. Roughly 1 in 200 sufferers of severe epilepsy die of SUDEP each year. For sufferers of mild idiopathic epilepsy (epilepsy of unknown cause), the figure drops to 1 in 1,000 per year. The incidence of SUDEP among people who are in remission from epilepsy is negligible.

Cary Groner is a freelance writer in northern California, writing for Applied Neurology on SUDEP, says that research suggests it may be the cause of death in 7% to 17% of all epileptic patients and in up to half of patients with refractory epilepsy. Almost all victims of SUDEP die at home, usually in bed.

Research is helping clinicians profile which patients are likely to be at highest risk. Important contributing factors include a history of uncontrolled seizures as well as seizure type (tonic-clonic seizures present the gravest danger and are associated with at least 90% of SUDEP cases; complex partial seizures also increase risk, but absence seizures do not). Evidence suggests that epilepsy duration heightens risk (most persons who die of SUDEP have had epilepsy for 15 to 20 years).

Elson So, MD, professor in the Department of Neurology at the Mayo Clinic College of Medicine in Rochester, Minnesota, adapts his decision to the individual patient but favors providing the information about SUDEP. "Patients with a history of uncontrolled, generalized tonic-clonic seizures are at highest risk," So said. "Those are the ones I pay the closest attention to and counsel about SUDEP. I think they need to know."

Okay, great. But what about discussing SUDEP risks with clinicians? Apparently, physicians treating patients with E. are subject to 'myths' about E. How these "myths: came into being is a direct function of sociological dynamics.

Despite early work on SUDEP, during the remainder of the Twentieth Century, the subject of epilepsy deaths was neglected and any research on the subject was ignored. In medical texts, and thus in the minds of medical practitioners, a ‘myth’ was established that epilepsy itself was not fatal. ’As far as longevity is concerned, the patient should definitely understand that epilepsy per se rarely causes death and that there is no reason why an epileptic should not live as long as he would if he did not have epilepsy’. (Dr. S. Livingston, Living with epileptic seizures, 1963) However, Rodin’s textbook, the Prognosis of Patients with Epilepsy, 1968, was a notable exception to the current thinking: ‘It appears to be quite obvious that the life expectancy of the epileptic individual does not reach that of the average person. It is also quite impressive that the figures have not shown a dramatic improvement during the past 5 decades. Although death from a seizure is relatively rare, it does occur on occasion and is not preventable under all the circumstances at the present time.’

An explanation as to why SUDEP was forgotten comes from Dr. Lina Nashef in 1995. Following two World Wars, the subject was addressed again but the setting had altered and new writers did not pick up where others had left off. Effective modern anti-epileptic drugs meant that Physicians felt both optimistic and omnipotent. Patients with epilepsy had moved from asylums into the community and there was much less opportunity for observation. Risks from epilepsy were minimized, then denied; that epilepsy could not be fatal became ‘common knowledge’ despite evidence to the contrary.

From the 1970’s to the 1990’s, scientific interest in epilepsy deaths and SUDEP was increasing steadily but most medical textbooks still chose to either ignore the subject altogether or to go in the face of research and make assumptions about the lack of risk in epilepsy. One exception is the following by G.Jay and J.E.Leestma in 1981: ‘There should be an increased awareness that SUDEP in epileptic patients is probably not an extremely uncommon complication and that as more is known about its substrates and mechanisms, that education of the patients and their physicians regarding preventive measures, including careful attention to medication, may decrease or eliminate this catastrophic complication of epilepsy’. (Acta Neurologica Scandinavica Suppl.82, Vol 63).

During the 1990’s there was collaboration on the subject of SUDEP between researchers in the United States, the U.K. and elsewhere, and in the U.K. a self-help group for relatives, called Epilepsy Bereaved, began raising awareness of SUDEP through other epilepsy organisations, the media and by conferences. The risk of death from epilepsy became a subject for open debate and serious concerns about SUDEP were tackled in an increasing number of medical books.

In 1998 there was front page coverage of the story of Prince John which resurfaced when photographs belonging to the Duke and Duchess of Windsor were published for the first time. ‘HRH Prince John who has since infancy suffered from epileptic fits which have lately become more frequent and severe, passed away in his sleep following an attack this afternoon at Sandringham.’

Prince John, the sixth child of George V and Queen Mary died in 1919 aged 13. (In 2003 the BBC made a drama series about the short life of Prince John).

Epilepsy is often assumed to be a benign condition with a low mortality. There is, however, increased mortality in patients with epilepsy, which is relatively high among younger patients and those with severe epilepsy. (Hauser et al, 1980, Hauser & Hersdorf fer, Nashef et al 1995a).

The risk of SUDEP in the general population of people with epilepsy is of the order of 1:1000 per year, typically a young person, 20-40 years old, with poorly controlled tonic clonic seizures.

Most SUDEP deaths are un-witnessed, but there is evidence that SUDEP may often be preceded by a seizure. For people with severe epilepsy the risk increases to 1:200-300 per year.

In one American study a SUDEP rate of 1 in every 370 people with epilepsy has been suggested. (Leetsma et al 1989). It is however a fact that, through ignorance and misunderstanding - few doctors and even fewer coroners are aware of SUDEP - epilepsy related deaths have often not been accurately recorded and the exact number of deaths falling within the category of SUDEP is not known. By declaring a death resulting from a bath-time seizure as ‘drowning’, or a fatal nocturnal seizure as ‘suffocation’, and by not mentioning the epilepsy connection, valuable research data is being lost. SUDEP is death in an otherwise healthy individual with epilepsy where there is no clear explanation of what caused the death.

Evidence suggests that most sudden deaths are related temporally to un-witnessed seizures and may occur during sleep.

The exact mechanism of SUDEP is unclear although essentially it may be respiratory or cardiac. Indeed there may not be a single explanation for such cases and research is ongoing. One theory that may explain the respiratory factor is that epilepsy itself and/or the medications taken (AEDS) may weaken some major organs, causing patients to have difficulty in breathing, especially during a tonic clonic seizure.

Respiratory problems may be due to an airway obstruction or fluid in the lungs (pulmonary odoema) or the seizure discharges may spread to the respiratory centre and cause a terminal apnoea (cessation of breath). It is known that many people who experience seizures stop breathing for a significant time. While it may be common to recover from a seizure and return to a steady normal breathing pattern, a problem arises when the natural recovery does not happen. In essence the patient could suffocate.

The other possible cause of death is cardiac related problems when seizure discharges spread to areas that control heartbeat and cause a fatal cardiac event. During and / or in between seizures, the part of the brain that controls heartbeat can be affected to the extent that an abnormal heart rhythm develops. It can become so unstable that the heart may suddenly stop beating entirely.

Doctors and neurologists also play a vital role in preventing SUDEP deaths as they are the people who can provide truthful, up-to-date information on epilepsy, and establish a management plan ensuring regular reviews, accuracy of diagnosis, medication, side-effects and impact on lifestyle in order to enhance seizure control. Unfortunately, the syndrome of Sudden Unexpected Death is largely unknown in the medical world, which is potentially very dangerous as it affects the way a patient with epilepsy is treated by his/her doctor, how aggressively the condition might be investigated, and, ultimately, how the patient might approach his/her own epilepsy.

In the U.K. a Government funded report into epilepsy deaths shows that 39% of adult deaths and 59% of deaths in children were potentially avoidable and that short-comings in care may have been a contributory factor. Professor David Fish, Consultant Neurologist at the National Hospital, London, one of the lead authors of the report states: “The report found failures in the provision of care all through the system. This included problems of timely access to expert specialists and a lack of structured and effective review at primary and secondary care. It concluded that poor epilepsy management resulted in a substantial number of potentially avoidable deaths”. The report also found little evidence that the risks of epilepsy had been discussed with patients who subsequently died, or that specialist or doctors made contact with bereaved families to discuss the deaths.

Much of the information here points to doctors and researchers in Britain. It so happens that the UK has a very forward and more complete point of view on E. than does the US. It is a pity that a majority of docs in the US still labor with misunderstandings of E. Telling a patient or that patient's family that there is a significant risk involved with E. might be important for them to know, up front.

Still, perching on one's arrogance, feelings of omnipotence, as a physician, might be the worst thing one can do for an epileptic patient, such as myself. Certainly, telling me I cannot die from E., or that my concerns of E. are all in my head, could be a consequence of either bigotry or ignorance.

The consequence of such ignorance about E., should not be borne by the most vulnerable of us! Nor should it be left for our bereft families to struggle with after we pass on...

How E. Effects Sexuality...