Wednesday, April 30, 2008


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,

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...

Sunday, April 27, 2008

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.

Saturday, April 26, 2008


            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. 

Friday, April 25, 2008

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.

Tuesday, April 15, 2008

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!

The Bell

   Therapists tell us that one of man's preeminent fears is being buried alive. The term for fear of being buried alive is  Taphophobia ...