December 30, 2008
November 25, 2008
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.
November 24, 2008
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
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)
November 12, 2008
November 6, 2008
October 27, 2008
October 1, 2008
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.
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.
September 28, 2008
This is a subject I know something about, so indulge me, if you please.
September 7, 2008
The upshot seems to be that accessibility is an implicit right that we all hope will be corrected in the future.
August 20, 2008
August 6, 2008
What do you think of when you think of E.?
July 24, 2008
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.
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.
July 13, 2008
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 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 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.
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
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.
July 11, 2008
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...
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
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?
July 4, 2008
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
June 26, 2008
But, then there is a bigoted strain of reluctance still present among many writers who simply refuse to name E. even in the face of medical history. Lewis Carroll, Napoleon Bonaparte are two examples. Though the diaries of both men write that they have E., many historians simply leave out or work diligently to reappraise their symptoms so that they can rediagnose them as suffering some other condition than epilepsy.
June 9, 2008
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...).
May 30, 2008
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.
May 28, 2008
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.
May 22, 2008
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.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.
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 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:
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
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!"