Self-Hating Epileptics...

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

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

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

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

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

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

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

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

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

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

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

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

Will I get over it???

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

Blog Carnival #45: The Future

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

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

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

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

 

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

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

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

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

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

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

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

Wheeling Woman offers her Thoughts On Suicide ... She seems to be saying that while contemplating her own extinction, she is also contemplating her future. Astrid has written  a touching piece on her own views of the Future: No More Future.  In it, she dares to consider her own death. Her blog, Astrid's Journal, is everything a blog should be---it is beautifully written and breathtakingly personal, honest. I am wishing Astrid a long life and an uncommon Future and am in hopes she will be with us for many more years.

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

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

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

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

Ettina at AbnormanDiversity writes a fascinating bit about Demand Avoidance and new ways of deriving meaning and social improvement, not just for these autistic ones, but for other ones as well.  If, in the Future, we were to take lessons from ourselves and insist the able-bodied word function in the same manner, we might improve life inside and out of the classroom for all of us. I liked this one particularly well...

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

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

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

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

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

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

Ivan, has sent us Off to the Future.  

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

Dark Angel offers Tiimes They Are A Changin' .

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

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

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

Writing: What Are We Trying To Say?

Over the years, I have been fascinated by the numbers of persons with E. who write. Historically, many of my favorite authors were persons with E... But, I wonder what we are all trying to say?

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

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

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

I know it has helped me tune up my prose.

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

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

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

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

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

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

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

The Mind's Eye...

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

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

Who Owns Me?

There is a feature of disability that has to do with body integrity and ownership. For many of us, it stems from the multiplicity of medical tests and exams we experience over a lifetime that leave us feeling much like a slab of meat. It is a kind of medical victimization, if you will. It is, certainly for many, a traumatic experience

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

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

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

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

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

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

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

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

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

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

I don't know.

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

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

'Just Say No'. 

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

Reflecting on her own experience as the survivor of violent sexual assault, and drawing upon the narratives of holocaust survivors, ... [Brison] interweaves a phenomenological description of the sense of loss of self experienced by survivors of trauma, with philosophical analysis of different conceptions of selfhood-the self as body, the self as constituted by memory, the narrative conception of selfhood, and the autonomous self. The experience of loss of self, she contends, affects all these modalities of selfhood, showing the importance of each. Brison's account of self-recovery also brings out the inherent relationality of these modalities of selfhood-if others can violate a person's sense of bodily integrity and can radically undermine her sense of self, it is yet only through others prepared to listen to her narrative that the survivor of trauma can re-make herself. 

Brison's essay should be read as reflective analysis, rather than as an argument for a particular thesis, according to Catriona MacKenzie, McQuarrie University. 

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

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

Education as Equalization.

When one begins to consider the track of her life, one can only come back to a single question: how can I become equal to the task that is, that will forever be, my life?  I know when I was young, it seemed unfathomable to me how one would know how to do things correctly, successfully, as an adult. For instance, how would one get money to pay bills or buy food? I did not quite comprehend the connection between working and money. I knew people worked "for their living", certainly, but just how did that work translate into living. The notion of growing up was really frightening to me.

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

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

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

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

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

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

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

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

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

This has helped me immeasurably. 

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

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

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

I believe that Death rides in a carriage drawn by six matched horses. He rides from behind the Moon in the night sky and we can see him coming because he leaves a trail of mist  behind him.

I also believe that we cannot evade Death, but that some of us are Death’s Familiars.

Growing up, I was suspected of being magical and of  demon possession by one grandmother, and of being angelic by another. I am someplace in-between and mortal.

I craved the Church and later came to it. I am blessed by my relationship to it and call the saints, friends. When I was younger, they travelled with me on long and short journeys. 

I live in the hope that they will each remember me if I descend into the oblivion of seizure and am unable to climb out of it. 

I believe in amulets and charms, spells and prayers. Perhaps I am a heretic, but I believe that the imperfections of my faith have already been absolved as they are a part of my Epilepsy.

I have left temporal lobe E. and it makes one curious about the mystical elements of life and Death. As a teen, I would lie awake at night with the window open and hold my eyes open in case Jesus Descended to talk with me. Feeling that I had already suffered much, I felt we would have much in common. He never came to me directly.

But a black cat did show up, sat on the patio outside my bedroom window and waited for me to speak. I said nothing, and so he waited. Finally, the sun came up and he left. 

There are far more serious answers and meditations that should be given to this question, but I am too timid to offer them here. When one begins to talk about, think about or write about Death, dying and the like, others can become overly concerned and for people with E., it can be a double concern because many of the drugs we take can cause "suicidal thinking". So, I am compelled to add that I am writing about Death as a participant in the Carnival and not as an outgrowth of some drug-induced ideation...

All I can really offer is that I believe in a metaphysical world and feel myself a part of  it at all times. 

For those of you who think that I am suggesting a link between mysticism and TLE, let me make clear that there seems to be one---the 5 symptoms together are called Geschwind Syndrome and this symphony of elements is supposed to outline many TLE epileptics, particularly of the left side, accurately. 

But, docs haven't made their minds up about Geschwind's Syndrome... Here is what D.F. Benson has recently written on the subject:

Benson DF.

Department of Neurology, UCLA School of Medicine 90024.

A characteristic personality syndrome consisting of circumstantially (excessive verbal output, stickiness, hypergraphia), altered sexuality (usually hyposexuality), and intensified mental life (deepened cognitive and emotional responses) is present in some epilepsy patients. For identification, the term "Geschwind syndrome" has been suggested as a name for this group of behavioral phenomena. Support for, and criticism against, the existence of this syndrome as a specific personality disorder has produced more fire than substance, but the presence of an unsettled, ongoing controversy has been acknowledged. At present, the strongest support stems from the many clinicians who have described and attempted to manage seizure patients with these personality features. Carefully directed studies are needed to confirm or deny that the Geschwind syndrome represents a specific epilepsy/psychiatric disorder

So, when I write that I have considered suicide ever since I was a child or that I talk incessantly or that I am mystically and religiously inclined, etc. you can see it may have an epileptic origin. Not because of the the drugs, but from the etiology of the E. itself.

Disability Hierarchies

Sean, at transabled.org, gives a really good description of disability hierarchy. I am reprinting it here:  

What do I mean by "hierarchy"? Simple, there seems to be a belief that some types of disabilities are better than others. Quads are better than paras, paras are better than amputees, etc. It seems at times that only certain disabilities are "acceptable". Wheelchair users are at the top (and that fact is pretty obvious with the International Symbol of Access (ISA), a stylised wheelchair user...

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

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

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

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

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

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

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

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

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

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

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

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

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

We're all waiting!

FEAR, Anxiety and Epilepsy

Persons with E. are hampered by Fear. But for many epileptics, Fear isn't just Fear, it is a paralyzing state of Anxiety that is difficult to analyze and articulate for most of us. The co joined states of Fear and High Anxiety can create just the right conditions to bring about seizures, and at just the times none of us want them to occur! 

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

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

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

Some people offer motivational advice. 

Motivational advice can be useful, sometimes. For me, the inspiration it brings seems to vanish in the throes of both Anxiety & Fear, so it feels useless, something I am unable to hold onto in a crisis.

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

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

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

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

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

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

See what you think!!!

Will "Ugly Laws" Make a Comeback???

(CBS) A Port St. Lucie, Fla., mother is outraged and considering legal action after her son's kindergarten teacher led his classmates to vote him out of class. 

Melissa Barton says Morningside Elementary teacher Wendy Portillo had her son's classmates say what they didn't like about 5-year-old Alex. She says the teacher then had the students vote, and voted Alex, who is being evaluated for Asperger's syndrome -- an autism spectrum disorder -- out of the class by a 14-2 margin.                                 

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

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

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

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

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

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

Fight Back---Complain!!!

When we visit the doctor, we expect to be treated well and to be given professional attention. When this does not happen, most of us feel alienated. Since we need the help of doctors to maintain our condition, it is important for each of us to take responsibility when something goes wrong.

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

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

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

The Persisting Stigma of E.

I want to take a running stab at an explanation for the persistant stigma associated with E...

There is a grand new book by Sadi Ranson-Polizzotti titled The Bedside, Bathtub & Armchair Companion to Lewis Carroll --- however, while writing and researching the book, Sadi encountered stiff resistance from other Carroll scholars against the notion of Carroll's epilepsy. The resistance is wholly their own, because Carroll freely admitted to it in his diaries. He was diagnosed with it formally and learned to cope with it.

So why the resistance to it today???

According to David Rothman's review,

Epilepsy: The real origins of the creative bizarreness

Carroll, it turns out, suffered from epilepsy, and Sadi says that shaped his imagination and led to surrealistic passages in his works—and maybe even in part to the birth of surrealism itself, for Carroll was surrealistic before the word existed. Think of that next time you read, say, of Alice falling down a rabbit hole or shrinking to three inches or growing to nine feet.

In other words, rather than slapping all kinds of Freudian explanations and tags on Carroll, a biographer might do better to search The Reverent’s diaries for his unwitting descriptions of the disease. Sadi says her work is the first book not to gloss over the epilepsy. In Carroll’s days, epilepsy bore enough of a stigma to discourage doctors from making such a diagnosis despite the obvious signs in his diaries such as the headaches and particular kinds of hallucinations.

I have not read the book yet, but based on Sadi’s lively and literate writings published here, I’d recommend you consider buying it if you’re an Alice fan.

Sadi has mentioned the resistance by others when it comes to identification of Carroll as a person with E. A relative of his makes a similar remark about him, related to his photographic endeavors:

I have lived my life with this association and I have never known exactly how to react to people’s views on Dodgson. On the one hand is the whimsy and delight of the Alice stories. But to others, there is a darkness about Dodgson’s subject matter for his photography. As an aside, there is precious little discussion of his significant contribution to mathematics.

From my own research, Dodgson’s photographic techniques were groundbreaking and the appropriateness or otherwise of his subject matter is simply a matter of opinion.

For what it is worth, Alice Liddell’s family seemed to have an opinion that it was not appropriate and thus succeeded in planting an element of innuendo into the interpretation of Dodgson’s behaviour. This seems more a reflection on Victorian morality rather than anything else.

It is important to note that in Victorian times, E. was considered a blight on a person which cast into doubt the quality of the individual--- it made questionable the moral standards of the individual, to be certain. Lewis Carroll's moral reputation was perhaps darkened by the fact of his epilepsy, and it seems as if that stigmatic darkness has pursued him to the present day.

It is important to keep in mind that it was during Victorian times that the medical community believed epilepsy (or at least some forms of epilepsy) were caused by too much sexual stimulation and it was Dr. Issac Baker Brown, surgeon, who advocated and practiced both male and female circumcision as a mode of treatment for epileptics, to lessen seizures.

The connection between sexual practice and epilepsy was a strong one in Carroll's day.

However, it is important to note, just as Sadi Ranson-Politzzotti has done, that the epilepsy was a huge contributing element to Carroll's genius.

I heartily and sincerely second David Rothman's suggestion that you purchase this book!!! It will provide new insight to your own condition as well as to the author so many of us cherish.

For ordering information, go to the following link: http://www.tower.com/details/details.cfm?wapi=111710568
To read more about this from Sadi's own blog:
http://tantmieux.squarespace.com/lewis-carroll/

From Sadi's site, you can learn more about how to purchase a personalized copy for your home library, or as a gift!!!
And, just so you know, Sadi is a fellow TLE---let's support her good work and insight by purchasing her book!!!

To Bell the Cat...

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...

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!