December 30, 2008

Controlled Substances and AED's

Some things are odd and one encounters them in strange ways. For example, a friend of mine with E. who still drives was arrested a couple of weeks ago. The charge was not her driving, although the cop who stopped her said he did not like her lane change. 

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

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

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

November 25, 2008

What to Ask for this Christmas?

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

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


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


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

Now, I have to get ready for Thanksgiving dinner. 

More about Christmas, later.


November 24, 2008

Protecting "Normal"...

Politically correct (PC) speech is interesting to examine. Like I suggested in my first posting, I prefer not to use it about myself. In my opinion, PC speech is irrelevant to my own experience as an epileptic.

A couple of nights ago I attended an Epilepsy Month panel and at the end of the panel discussion there was time for a question and answer period. A young man stood up and began to speak, but the first few words out of his mouth were “I am an epileptic” so one of the panelists stopped him in front of everyone to chide him about his use of the word “epileptic”.

I wasn’t very happy about it. So, it made me think…

What are we really doing with PC language, anyway?  Doesn’t our word-choice reflect on our experience as a disabled person? Don’t we have a right to choose how we will self-identify, without fear of recrimination from anyone? I think so.

A blogger friend of mine insists on employing “language amnesty” toward one another of us involved in a cross-disability dialogue. I think “language amnesty” is a good policy across the board. I think before we decide that an individual’s word-choice for self-identification is wrong or harsh or unacceptable, we need to pause and allow the person the room to express his or her own experience via his term for himself.

I know I spend a lot of time on language issues, but to me, if we cannot effectively communicate, then we have lost all power and all hope of being able to defend our lives as disabled folk. 

November 20, 2008

Lighting the Way???


On February 20, 2007, Australia announced that it would phase out the sale of the incandescent light bulbs (that we use nowadays) by 2010 and replace them with CFL (compact fluorescent light) bulbs.

Two months after Australia's announcement, the Canadian government announced that it too would phase out sales of incandescents by 2012.

On December 19, 2007, USA also announced that it will phase out incandescent bulbs by 2014.

In fact, President Bush signed an energy bill that will make the production or sale of the incandescent bulbs illegal after the phase-out period, which means people will be forced to buy the CFLs whether they like it or not.

The European Union announced in March 2007 that it plans to cut carbon emissions by 20 percent by 2020. Part of this cut will be achieved by replacing incandescent bulbs with compact fluorescents. Over the next 10 years, China, which makes 70 percent of the world's light bulbs, has agreed to phase out incandescent bulbs in favor of CFLs  (
www.myproductalert.com/cfl-compact-fluorescent-light.html)

Sure. All of us want to participate to save the planet, to go green, to reduce our footprints on earth. Still,
I am not alone when I suggest that this is a bad solution for many of us. Gee---I have trouble sitting in a 
classroom with fluorescent lighting, so I am really gonna have troubles with living 24/7 with it, compact or not.

It may be necessary to contact Health and Human Services and protest against a kind of forced situation that 
may aggravate our conditions as well as the conditions of other disabled.

I know throwing over incandescent light bulbs seems like a good idea, but one simply can't unilaterally decide 
without taking into consideration the needs of others who must live among the 300,000,000 
that populate our country. 

Remember, one in fifty of us has epilepsy and our population alone will be poorly served by this decision. 
But there are others who suffer from exposure to this kind of lighting, and so to force it on us is simply cruel.
A better strategy might be to rethink how we will proceed, to see if another way exists that might be healthier 
for all of us.






November 12, 2008

Who Will Help Represent US?

Yeah, Clinton's correct. There is also no urgency in funding even though people die from Epilepsy more frequently than they do from AIDS each year in the United States. 

One of the things I know we need is a human face. If we are going to engender support for Epilepsy research and awareness, we will need a very public person to stand out and up on our behalf. 

I think we should collectively make a list of persons we think might make excellent spokespersons for us at a national level.  Someone with E. would be best, I think, but I could be wrong...

1.  Bill Clinton
2.  Neil Young
3.  George Clooney
4.  Senator John McCain
5.  Greg Grunberg
6.  Oprah Winfrey

OK---I have run dry of ideas, but if you can suggest some others, I will add them in. So far on the list, the only person with E. is Neil Young. 


November 6, 2008

Epilepsy Awareness Month!!!

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

Here is a little ammunition to get the conversation rolling:

1.  Epilepsy outstrips AIDS in annual deaths
2.  Some 181,000 persons will develop Epilepsy each year.
3.  The Department of the Army estimates that as many as 50% of returning injured Iraq and Afghan vets will develop E. within the next 15 years.
4.  The same percentages apply to veterans from the VietNam war.
5.  An epileptic "seizure" is not necessarily a "convulsion".
6. There are an estimated 22 different seizure types.
7. 1 in 50 people already have Epilepsy.

The most important thing an individual with E. can do for himself is to stand up and identify as a person with E.
Stigma, or a feeling of disgrace or shame can be eliminated if we stand up and speak out. Stigma is the most dangerous aspect to life with Epilepsy.


October 1, 2008

The Lamictal Skin Rash...



Some of us take a single AED for our condition. Others of us take more than a single drug. Many of us have been warned about the serious side effects possible from our drugs and there is one drug that seems to have the wildest side effect: Lamictal has the potential to cause a deadly skin rash.
The rash is referred to as Stevens Johnson Syndrome.
Although I received this warning when I began taking Lamictal, I found it was difficult to find photos of what the rash looked like. I wanted to see it so that if it began happening to me, I would know when to rush off to the hospital. 


I have recently found a photo that is of a woman with this rash, and I have included information on what this rash is.

Here's hoping it helps some of you!!!

Lamitical is a drug used to control seizures. In a small number of people, LAMICTAL causes a serious skin rash. In these cases, the person must be treated at a hospital; rarely, deaths have been reported. Serious skin rashes are most likely to occur within the first 8 weeks of treatment with LAMICTAL, although people taking LAMICTAL for several months have also been affected.

Erythema nodosum is often associated with systemic diseases such as tuberculosis and rheumatic fever. Tender, bright red, slightly elevated nodules develop along the shins. Erythema multiforme can have a number of causes, including viral and bacterial infection, chronic disease of the visceral organs, or allergic reactions to drugs. In Stevens Johnson Syndrome, a person has blistering of mucous membranes, typically in the mouth, eyes, and vagina, and patchy areas of rash. In toxic epidermal necrolysis, there is a similar blistering of mucous membranes. However, in addition to blistering, the entire epidermis peels off in sheets from large areas of the body. Both disorders can be life threatening.

Stevens Johnson Syndrome Symptoms & Treatment

Stevens Johnson Syndrome and toxic epidermal necrolysis usually begin with fever, headache, cough, and body aches, which may last from 1 to 14 days. Then a flat red rash breaks out on the face and trunk, often spreading later to the rest of the body in an irregular pattern. The areas of rash enlarge and spread, often forming blisters in their center. The skin of the blisters is very loose and easy to rub off.

In toxic epidermal necrolysis, large areas of skin peel off easily. In many people, 30% or more of the body surface peels away. The skin loss in toxic epidermal necrolysis is similar to a severe burn and is equally life threatening. Huge amounts of fluids and salts can seep from the large raw, damaged areas. A person who has this disorder is very susceptible to infection at the sites of damaged, exposed tissues; such infections are the most common cause of death in people with this disorder.

The affected areas of skin are painful, and the patient feels ill with chills and fever.The hair and nails sometimes fall out.

Blisters break out on the mucous membranes lining the mouth, throat, anus, genitals, and eyes. The damage to the lining of the mouth makes eating difficult, and closing the mouth may be painful, so the person may drool.
Ocular involvement includes severe conjunctivis, iritis, palpebral edema, conjunctival and corneal blisters and erosions, and corneal perforation. The eyes may become very painful, swell, and become so filled with pus that they seal shut. The corneas can become scarred and there may be loss of vision.

Esophageal strictures may occur when extensive involvement of the esophagus exists. Mucosal shedding in the tracheobronchial tree may lead to respiratory failure. Mucosal pseudomembrane formation may lead to mucosal scarring and loss of function of the involved organ system.

The urethra may also be affected, making urination difficult and painful. Vaginal stenosis and penile scarring have been reported. Renal complications are rare.

Sometimes the mucous membranes of the digestive and respiratory tracts are involved, resulting in diarrhea and difficulty breathing. 

Lamitical is a drug used to control seizures. In a small number of people, LAMICTAL causes a serious skin rash. In these cases, the person must be treated at a hospital; rarely, deaths have been reported. Serious skin rashes are most likely to occur within the first 8 weeks of treatment with LAMICTAL, although people taking LAMICTAL for several months have also been affected.

The best advice is to keep an eye on your skin and notice if it changes or becomes reddened and itchy. If you have questions, see your doctor. This is something they will want to know about, so be persistent with them.

I've been taking Lamictal over a year now and have had no effects at all. The drug does seem to be working against my seizures, though, and I am currently happy with the protection it has offered me. 

Wishing you seizure free days ahead!

September 28, 2008

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!


September 7, 2008

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. 


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!


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... 


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?  


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...


August 20, 2008

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. 


August 6, 2008

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.? 

July 24, 2008

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?" 




July 13, 2008

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.


July 12, 2008

Whining About Chronic Illness/Disability!

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

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

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

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

 Following doctors' orders and trying to 'get well' as his only task is now viewed as self-centered behavior. 
If we can recall, the nut of Talcott Parsons work centered around some pretty specific guidelines:

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

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

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

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

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





July 11, 2008

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!

July 4, 2008

Happy Fourth of July!!!



The above piece depicts a Fourth of July parade in a small New England town and is by American primitive folk artist Jane Wooster Scott. Originally from Philadelphia, Scott moved West to California to "get into show business". The turning point in her artist's career was when she had a joint showing with actor Jonathan Winters at the Ankrum Gallery in Los Angeles. Scott is known as one of America's  most highly reproduced artists and her themes are American of the early 20Th century... 



July 2, 2008

Hello, World!

I have the pleasure of glimpsing the flow of readers to my site because I added Site Meter some weeks back. I would like to extend to each of you my personal "Welcome" and "Thank-you" for taking the time to read my posts and look at the art.

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

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

Again, thanks for reading!!!

June 26, 2008

Who's Got What and Why?

I have noticed recently that the attributions of diseases and disorders for many famous people are shifting. Vincent Van Gogh, for example, has long been considered epileptic, but recently, has been decreed bi-polar instead. The symptoms are the same, but the designation has been changed.

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

I think not.

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

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

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

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

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

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

June 9, 2008

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!!!


May 30, 2008

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"? 



May 28, 2008

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...

May 22, 2008

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!!!

May 1, 2008

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.