Thursday, June 13, 2019

The Bell

   Therapists tell us that one of man's preeminent fears is being buried alive. The term for fear of being buried alive is Taphophobia or Taphephobia may be the reason mining disasters capture and hold our attention, even when they happen far from our shores. A subset of that fear is the notion of being cremated alive. The sense that if one woke, surrounded by flame, enclosed not just in a box, but also in a cabinet, it would lessen one's opportunity for escape.

  In the seventeenth, eighteenth and nineteenth centuries, this fear seemed to reach epic proportions, evidenced by a series of inventions: specialized, safety coffins with an attached bell and pulley system. These systems were designed so that if one awoke after being buried, they could ring the bell and be rescued. Families often hired grave diggers to wait up through the night just in case a bell rang. This practice encouraged the phrases, "saved by the bell", "dead ringer" and "graveyard shift".

When I was small, I frequently endured status epileptics of the convulsive type. At age 35, I went for a blood test and suffered a massive, violent tonic-clonic event and the folks in the Cigna lab thought I had died in the chair from it. All of them left the room and turned out the lights. Only thanks to my husband, who has experience with my epileptic states, was I not carted out by a coroner.

   For me, the idea that one might be perceived dead when she was not seemed possible. I read Poe's short story "Berenice" and a few others by Poe. It seemed to confirm my worst fears, until I really began thinking about it. Still, as calm as I have learned to be, I have told my family NOT to cremate me and to definitely "wake" me for at least three days... And, DO NOT enbalm me.

Just keep me chilled and all will be well...

I think that's reasonable!

Saturday, March 9, 2019

Waiting On "The Cure"

   So, I am nearly seventy now. Another couple of years and I will reach that mark in my lifetime and after all this time, I have yet to see a proven cure for Epilepsy. Sure, the drugs have improved. Sure, surgical techniques have improved. "cure" has arrived. 
         I suppose it is something like arriving in the future and there being no flying cars or teleportation devices. Rats! 
     A cure for E. is something vague, something to be hoped for, but probably not very likely to occur, at least in my lifetime. 
     Then what do we do with our hopes? Well, just what we are already doing---walking, running and donating for the Cure. Waiting for it to come. We watch days and then years pass. We read everything we can, we give  to organizations who say they are working for a cure. We stay good-natured and optimistic, thinking positivity will cosmically speed things along, but still there is nothing for us. But for many, a cure is their dream...
     I have an older sister and she is blind. She has the acronymic RLF. Retrolental Fibroplasia (RLF) was caused in the 1950's by too much oxygen administered to premature infants. She does not sit around waiting for a cure, though, many folks have asked her over the years if she would want to be cured of her blindness. She has always answered "no".
      Her dream in life has been to be able to drive a car. She has gotten very excited over the prospect of the self-driving car recently and is hoping she will be able to own and use one one day. Personally, I hope her wish is fulfilled...
      It seems, to my way of thinking at least, impractical or implausible to find a cure for an overarching condition like this because there are so many kinds and types of E. And if there was a cure, upon whom would this cure be bestowed? Would a new hierarchy of severity and deservedness be created to winnow the Some from the Many? 
     I guess I sound a little pessimistic and a bit paranoid here, but these are the kinds of things I imagine with talk of  a pending "cure".
     I get it---I mean all of us would like to wake one morning to the idea that we are solid and no longer prey to seizures, no matter the kind. I wish for that eventuality, too. I am so tired of having epilepsy. It makes me weary down to the nubs of my soul to have to even think about it. I am so tired of having to say to another person that I had a seizure or that I need to lie down, sit down, drink water, close my eyes, etc. because I feel a seizure coming on. And I am equally exhausted of being teased with the idea of a cure, lingering just around the corner.
     If one should materialize, I will be glad. Until then, I am finished waiting for the cure to find me. I think it's a reasonable posture to take, don't you?      

Saturday, June 2, 2018

Have You Ever...?

       It occurred to me the other day that when I haven't had a convulsion for a long-ish period of time, I begin to get nervous. I become hyper-aware, and every little thing seems to feel like a warning that a massive event is on the way. I would love to feel free of epilepsy, but I never really do.
       I suppose part of my anxiety is linked with the fact that I do have an aura before an event. This means (at least to me) that any little sound, smell or visual oddity is a signal to be careful where I go, what I do and with whom I do it.
       And each time the sequence of events repeats, it makes me feel as though the pattern is set. Epilepsy really cannot be avoided. Convulsions can't be evaded. Seizures of all sorts and kinds can't be talked away or reasoned with. There is no amount of willing or determining that can be done by any one of us that can keep it away or make it stop once it has you. And, for me, there is an almost claustrophobic feeling that I cannot outrun or escape it's onset. Of course, this is how it feels when I am only ruminating on it. We all know that when E. does happen to visit, no  one really has the time or luxury to contemplate how it feels.
         So this is why I say I am epileptic because contrary to the positive thinking of many folks, I do not deny that my epilepsy has me, and that it has since I was 3 years old. I know it has informed and even formed some of my thinking and development as a human being. But, how do you think of it???

Friday, March 30, 2018

Fillicide: Murder or "Mercy"

Related image
         The name of the institution where disabled Japanese were murdered by Satoshi Uematsu
         with a knife is shown in this image. 
SUDEP is the unexpected death by epilepsy. We are coming to terms with this reality as epileptics. An aspect of having epilepsy is guilt and fear.

The guilt of causing a disturbance to the flow of everyday living and the fear that the people around us will simply give up on us. That their support for us and for our lives will evaporate one day. In the United States, it has been estimated that about once a week, a disabled person is murdered by someone close to them.

“Filicide” is the legal term for a parent murdering their child. In the disability community, “filicide” is used when talking about a parent or other relative murdering a child or adult relative with a disability. The murders of people with disabilities covered in the media, often show empathy for the murderer instead of the victim.

Approximately once a week, a person with a disability is murdered by a family member or caregiver. When these murders are covered in the news, they are often called “mercy killings”. This perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life.

When parents do kill disabled folks, adults or children, the media almost always presents one of two narratives: the harried-but-saintly parent or caregiver who couldn’t bear the terrible burden and (understandably) snapped one day, or the saintly parent/caregiver who killed out of the tenderest of mercies.

The Rudman Foundation offers a profile of filicide, with a link to the white paper it came from:

*At least 219 disabled people were killed by parents and caregivers between 2011-2015—an average of approximately a murder a week. This is a very conservative number due to under-reporting and the fact that a victim’s disability is not always made public. The real numbers are likely much higher.

*The killers routinely claim “hardship” as a justification for their acts. The media rarely questions such claims or asks for comment from disability rights organizations, and especially not from people with disabilities themselves.

*In the drive to explain a killing, the lives of the victims get erased resulting in killer-centered, rather than victim-centered reporting.

*Spreading the hardship narrative may lead to more violence, rather than changing policy around supports. In many cases, the narrative is fundamentally not true.

*Many killers receive little to no prison time. In such cases, perceptions of disability as suffering inform judicial decisions not to punish filicide

While this little post is not necessarily specific to those of us with epilepsy, we are a part of the numbers of disabled in this group. There is a National Day of Mourning dedicated to these victims of filicide; the date is March 1, each year.

Saturday, March 17, 2018

St. Patrick & Epilepsy...

MEDICAL MATTERS:  if you suffer from epileptic seizures, St Patrick’s your only man, writes MUIRIS HOUSTON
THE INTERNATIONAL image of St Patrick’s Day is more about leprechauns, green beer and cabbage and corn beef than early Irish Christianity. And while the myths associated with St Patrick do not have a particularly medical flavour, in general saints have been linked with diseases and cures through the centuries.
St Patrick has been mentioned as someone to pray to if you have epilepsy.
Tradition has it that a person with epilepsy who slept on “leaba Pharaic” on Caher Island off the Mayo coast could be cured. 

Wednesday, February 28, 2018

The Way Back...

      If there is a clue to epilepsy, then it has to be in our collective past. That is what this blog has entertained since I began writing it. Our collective past makes our present and even our futures possible. We have to do more than offer our experiences in daily living to others. We have to offer some kind of historical perspective, a social perspective, concerning epilepsy.
For me, this is a root component to learning to understand and to live with this condition.
      Take for example the photo above. At the turn of the past century, the medical knowledge at the time suggested that persons with epilepsy needed to be hospitalized for the protection of the family and the patient.  Care was limited, in our contemporary sense of the word, to labor and fresh air.
            Separate accommodations for the "feeble minded and epileptics" often meant various treatments, including segregation, bromides and starvation. It was felt at the time that starving some epileptics resulted in a marked reduction in seizure activity, while bromides created a calming effect.
Hospitalization, then, was  complicated. Years later, sterilization for both men and women was considered necessary so that epilepsy could not be passed on in families.
     It was under these conditions that doctors became aware of the possibility of death from epilepsy. In close contact with epileptic patients, doctors observed that some of their charges died from the effects of seizing. Today, doctors brush aside the notion that one can die from epilepsy. Yet, it was common knowledge at the end of the 19th century and into the earlier part of the 20th century.
      Today, the notion that epilepsy is one of the most common neurological conditions prompts many doctors to deny the thought that one can die from epilepsy and not to pass the information along to their patients or their families. Sometimes, they simply don't know the range of complications related to epilepsy, sometimes it is a consequence of bad medical school training, sometimes it is a neglected issue because neurologists don't want to alarm families or patients. Whatever the case, the knowledge is frequently withheld.
      The experience of living after a family member or friend has died from this condition is terrible. Finding out that doctors knew that this is a possibility and have simply not passed it along is both frustrating and maddening. Activism against this reality has been somewhat effective. Today this possibility is termed SUDEP or sudden unexpected death from epilepsy.
      While this is not a posting to make us depressed or grim, it is important to be aware of the possibility and to know that there are folks working to restore this knowledge and import. Doctors must be pressured into telling the whole truth to patients and families. They are not in the position to withhold this kind of relevant information. That is a kind of medical paternalism. It should not and must not be tolerated.
      Medical activism should be practiced by those of us who share this condition. We must be proactive with our care. Arming ourselves is the best step we can take to inform and  protect ourselves and the people we love.
   Part of my effort with my blog is to encourage each of us to stand up for ourselves. Self identification is one of those ways. Confrontation with our healthcare providers is another way.
      Learning about our history and then making an application of it can be a useful tool and yet another way of pushing back, for our own benefit and for those not yet diagnosed.  

Wednesday, April 8, 2015

Telling Our Own Story...

It is both possible to suffer a disease without illness and suffer illness without disease. Illness connotes a moral condition and disease signifies a physical set of unfortunate bodily responses without moral imputation (Schneider & Conrad 1983). 

Further, the notion of illness conveys irregularity, victimization, pity and revulsion (Sontag 1978).  In the lives of the chronically ill, the struggle to sustain a balance between the physical and moral aspects of one’s condition can effectively blur the construction of identity, thus impairing socialization and independence by sapping the desire for either. The construction of identity does not take place in a vacuum. In many instances, the identity formation or the construction of Self is a process noticeable to us, as our participation in it progresses.

Take for example the simple act of relating how one has become disabled. Here, the story is the individual. Biographical data, integral to the formation of a personal identity, is the stuff of self, and a fragile artifact.  The effort one makes reciting this story is tremendous and in itself, an act of trust.

A common occurrence in this recitation, however, is the coopting of the tale by a friend or relative. In this instance, the individual is cut out of the loop of his or her own agency, because the telling of the tale is an assertion of his or her own self identity. When it is coopted by another, it is as if that identity is silenced.

When, at the same time, errors are made in the telling of the tale, an indescribable blow is made against the owner of the story. A kind of assault is made against the individual to whom the tale belongs. And, when this is done in the presence of a professional, it can undercut the validity of further input, making it seem unreliable.

Most of the time, the friend or relative does this action in an effort to “save time” because they have heard the story before and feel it may “drag on” more than is comfortable. For the individual to whom the tale belongs, it might be better if the friend or relative simply waited in the other room until the appointment is over.
For persons experiencing epilepsy, however, it can be difficult to ask the person to wait. The individual with epilepsy may feel the need to have a witness along to confirm certain aspects of seizure activity, such as the length of the seizure or convulsion.

We know that we cannot witness our own activity, but only report that something has or has not occurred. We are in a delicate spot at these times. We try to establish a sound self-image that can be respected by others. We also try to develop a sound relationship with the professional we are dealing with, and many times this is a physician. We know a doctor’s time can be limited, but we also know that there are salient elements in the story that will help the doctor to understand us best. 

How we tell the tale is as revealing as the tale itself. 


Monday, January 5, 2015

We Are Greater Than The Sum of Our Diagnoses

E. is a heavy label to live with. The culture surrounding it is one of silence and misdirection. It suggests that there is something about us of which we should feel ashamed. The effect of this can be a kind of paralysis: paralysis of speech, of thought, of action.

When I read about other disabled persons, I see a wide variety of writing, social action and speech. Books about the experiences of being disabled are more than just narratives of whether or not to have brain surgery, what drugs to take for my condition or how my doctor’s visit went last month. These others are not content to remain silent and medicalized. They want to live independent lives, think complicated thoughts, write and act in ways that allow them to be greater than the sum of their diagnosis.

When I first learned my diagnosis, I was still a child. I learned the words, the names of the tests, the names of all the drugs I had to take every day. I can recall doing projects in school about E. that included sections of my EEG printouts and answering questions from kids and teachers alike. This was a regular feature of my elementary school life and it continued into high school until an English teacher of mine suggested that since I knew so much about the subject, I should write about it. Confronted with this suggestion, I never said another word in class about E..

I recall working very hard to go to college and got an offer from one in Los Angeles. My mother turned it down flatly. She couldn’t imagine educating me beyond high school: “Spending good money on that sort of thing would be just throwing it away, wouldn’t it?” The worst part of it all was that I accepted this evaluation of myself.

Years later, I made my first attempt at college. I failed. I walked away from it and somehow this seemed to confirm my mother’s original comments. In my mid-40’s I tried again, at the same school. This time I was wildly successful. The experience changed me. I began to analyze the social and cultural structures that come along with a diagnosis of epilepsy. I am finding my voice and writing what we all know: doctors and drug-makers influence information about this condition more than the individuals who experience it.

I think changes are needed in the ways we experience E. We certainly have need of both the doctors and the drug-makers. But we have a greater need of each other. We need to talk to one another about our social experiences and how we worked through the difficulties we encounter. We need to demand a wider variety of articles and books on the subject---something more stimulating and interesting than the standard fare explaining what epilepsy is or the predictable I-triumphed-over-epilepsy tales.

We also need to have a little mercy on ourselves and recognize that we are just learning to speak to each other about our condition. Unlike the deaf, the blind or others who have enjoyed the luxury of being open about their conditions for decades, people with epilepsy have been shut off from each other, their own families and from the larger society until very recently. Speaking up about E. is a good thing to practice now, as we learn to talk about it openly with each other.

Wednesday, April 10, 2013

"Fail First"...What a Really Bad Idea!

 The notion that persons with epilepsy should be asked to "fail first" is ludicrous. Since finding a drug or combination of drugs that will control our seizures is, in essence, already a "fail first, then second, then third" proposition. To ask us to give up seizure control just to save a few dollars is a dangerous idea.

      Yet, insurers are pushing hard to get lawmakers to invest in the notion that it only makes financial sense. After all, our drugs are really expensive. Some of the older ones are cheaper, but the newer ones are just really costly. I have already taken and tried nearly all of the drugs for anti-seizures that are out there. I am unwilling to go back and begin again. They were crap, gave me terrible side effects, and most importantly did nothing to control my activity.

      I have been quite well controlled on the meds I currently take. They do a good job suppressing tonic clonic activity. While they may not work the same for each of us, they work for me! I currently take Carbatrol and Lamictal, brand names only for each. I tried the generics and there was poor control, so I am taking the brand names for each of these and having great success.

       Some folks are under the impression that epilepsy, as the 4th most common neurological condition in the nation, is not terribly serious. More of an unpleasant condition, but nothing one could die from. So, if it isn't "life threatening", what could be the harm? Eventually, one would get to the right medication(s), surely. And, while the epileptic is searching through the formulary for a drug that will work, he or she is still having seizures.

       I am reminded of a friend, who, on his diagnosis of epilepsy, began the search for a good drug. Unfortunately, he never got the chance to find one. Out shopping at a local mall, he began to feel odd, so he went to the men's room. He was overcome by a seizure, collapsed in the stall and died on the floor, alone.

      Yes, we can and do die from epilepsy. Seizures are dangerous. It doesn't take many of them to be lethal. "Fail first" looks to me like "wrongful death". The fools in Washington State, Maryland and other places should hear from us all, with gusto, warning them against the dangers of this foray into financial frugality. Telephone, email, snail mail letters of complaint. Send them this post if you like... They must not do this!

Wednesday, February 13, 2013

Invisible Pain and Suffering

When I went searching for images of pain and suffering online, I was surprised to see that many of those images had to do with tears, oppression and isolation. Others, more disability-oriented, had to do with wheelchairs, crutches and braces. My own takeaway was that everyone can feel the effects of depression, isolation and oppression and attribute both pain and suffering to these conditions, but only some know the like of physical loss that renders them confined to chairs, braces or crutches. The image above is an illustration from "Guinevere's Jealousy" by Tennyson. It offers to us the idea of secret suffering as a kind of etiquette of pain's expression. What the lady is in pain from, we cannot know and I do not know the image maker. I will include credit if one of you readers can supply me with the information I need... But, the notion of "suffering silently" for the sake of those around you, is not new. And it has been a burden particularly for those of us with "invisible complaints" that has been difficult for us to shake and even more difficult for others to accept. Once an individual begins to speak aloud about epilepsy or any other ailment, there is a powerful inner voice suggesting it was not a good idea to bring it up at all. 
     Many of us are keenly aware of a kind of barrier that persists, keeping us from excising at least some of the crushing pain and suffering we feel through the act of sharing. While it has long been thought that secret pain is the rule, we have learned that secret pain can twist and warp personalities, leaving some of us more vulnerable to others. In the image below is a good articulation of the landscape the artist imagines of secret pain. 

     The individual expressed by the central human head, is in agony, the crushing pressure of two screws working to compress his head. Tryng to relieve the pain, He opens his mouth to speak, but finds only a grimace at his disposal. The clock tells us that the individual has endured this condition, and will endure this condition over time. That it will end and begin again, interminably. The artist (who, again, I cannot know..) communicates at the top of the work that there is a barrier at the edge of this territory of pain that cannot be crossed. He even suggests, by the prominent placement of a Death's Head, that the barrier could represent thoughts of death as an escape from pain like this. As you examine the piece, you see other smaller images and note that the shape overall is like a cloud, or a fog of pain. This image is no fairytale representation. It is edgier, to be sure, But instead of suggesting "silence as etiquette", it suggests fear of pain and suffering and a yearning to end it by any means. That this is the modern etiquette of the already invisible disabled, to suffer silently, then when it becomes too much, yearn to die. 
     David Brooks, in his New York Times op-ed, "Death and Budgets", suggests that one way to cut Medicare costs is to impute to the disabled a sense of a "duty to die", for the good of the nation, rather than to go on existing as a mere "bag of skin" costing millions to sustain. Granted, Brooks was inspired by a friend with ALS whose stated desire is to die before his condition renders him incapable of doing the things he considers significant to living life, and then apparently Brooks coupled this inspiration with the thought that if more folks would think like this, it could be a budgetary windfall for the nation's health care systems. His intention seems to be that we could lighten the load for everyone else if we encouraged the thought that the ill should consider dying more quickly when it is clear that they cannot be cured. 
     So, referring back to the second image, this becomes a pressure, like the screws represent, on the invisibly disabled. Epileptics have been keen to keep their condition secret for generations. Many of us still will not speak about it, and with pressure like this suggestion that we have a "duty to die when we cannot be cured" the freedom to speak out becomes more difficult. 
    Rhead, George Wooliscroft & Louis. "Guinevere's Jealousy" from Tennyson, Alfred. Idylls of the King: Vivien, Elaine, Enid, Guinevere. New York: R. H. Russell, 1898.

Wednesday, December 19, 2012

A Little Death.

About two months ago, I was out for dinner with my husband. It was a lovely, California evening, so we sat outdoors. The restaurant was crowded with folks who shared the same idea. 
I just finished eating, pushed my plate aside and looked across the table at my husband.

I recall telling him I was not feeling well. I emphasized the statement, saying I was really not feeling well. I had the feeling of hot fingers walking up my back and I thought I was going to be sick.

I began looking at the floor for a place to lie down, but there was no place. 

And then I was gone.

I felt I had been gone quite awhile and as I came back, paramedics were at my side. For the first time in my life, I was going to the hospital!!! For the first time in 40 years, I had seized in a public place.

As it turns out, it was not just a seizure, but two in a row.

Monday, May 2, 2011

The Cage

Bothered by nighttime thrashing? Nocturnal activity troubling your spouse? Try the cage! Updated from older, more institutional models, the Cage is made from fine, hard woods with brass hardware. It comes with a lifetime guarantee... As long as you live, the Cage will protect you from injury during those nighttime spells. Custom fitted to your height and weight, the Cage offers you a peaceful, protected, comfortable night's sleep. In the Czech Republic, patients are routinely housed in "caged beds" as a means of keeping them from walking around and getting under foot. Please...understand that this is a little bit of sarcasm on my part. I just get sick of the things people do to try to "help" we disabled... Now, back to our regularly scheduled programming...

Friday, April 1, 2011

Testimony to the IOM

Very recently, I was supposed to offer testimony to the IOM. This group is looking into epilepsy and how best we can help persons with epilepsy. So, they have formed a series of meetings and have invited everyone with an oipinion to step forward and offer suggestions.
The Institute of Medicine is funded by the National Science Foundation, and might be able to assist us in some fundamental ways. Their next panel discussions are in June, Washington D.C., so anyone interested should Google them and see about attending.
Here's what I wrote to them:

There is a terrible gap in the quality of care owing to a lack of comprehension about epilepsy. The phrase “a commonly occurring

neurological disorder” frequently leads laypersons and professionals to

assume that epilepsy is not serious or dangerous to the patient. A more

refined amendment to approaches in medical school education would

benefit patients of all ages, and might make general practitioners and

neurologists more comfortable treating their patients with epilepsy.

Within the past ten years, I have been told by neurologists that “It

could be worse, at least epilepsy can’t kill you” and “Well, we’ll see if you

really have epilepsy: I will take you off all of your medications, and then if

you seize, we will know for certain”. During the same time, GP’s have

suggested that a tonic-clonic seizure has not occurred unless it is

accompanied by urination” and “It is very easy to fake epilepsy. Some of

you people do it for the attention.”

Clearly, these are physicians who are behind on their reading and

who might benefit from a specific educational approach. Initially, I would

suggest a survey into the Attitudes of Physicians toward their Patients

with Epilepsy.

Because physicians can, by their personal attitudes, enhance or

diminish stigma to epilepsy in the community and within the family, they

are also central to quality of life issues. Additionally, physicians with poor

knowledge of epilepsy often have the tendency to view this disorder

according to the germ theory model. They become easily frustrated when

they cannot fulfill their own expectations to find a cure for epilepsy; this

can breed hostility between patient and doctor.

It is also important that health insurers be more broadly introduced

to the neurological sub-specialty, epileptology. The diagnostic codes and

data used to make referral decisions for patients could be smoothed if this

category were supplied to them as a legitimate category in neurology.

So it seems that I am speaking about the need for a more intensified

educational approach, not only for the public at large, but also for the

professional population as a whole.

Treating epilepsy can be as frustrating for doctors as it is for

patients. Still, passing along bad information or resorting to cruelty is not

an answer. A cardiologist would not suggest taking a new heart patient off

his medications to see if he would have a heart attack to confirm a


Perhaps one of the more ridiculous “cures” ever provided happened

when I was a child. In about 1960, my mother went to see a neurologist.

She talked about me with the doctor, describing my condition in detail. She

mentioned to him that I had long red hair and that she brushed my hair

every morning. She told him that I frequently seized during this process

and more than once, it had triggered status epilepticus. He thought about

what she told him for a moment then concluded that it was my hair that

was the problem. My hair, he told her, was too heavy for my head and

should be cut short to relieve my seizures. She cut my hair off that very afternoon.

So it seems that I am speaking about the need for a more intensified educational approach, not only for the public at large, but also for the professional population as a whole.

We have all learned a lot in the past 55 years of studying and living

with this disorder. I can hardly wait to see how much more we can change

things, together.

Seizing the Moment...

This little bear suggests that we "seize the moment". No doubt, the caption was written by someone without E.,; still, it isn't bad advice. I wanted to say that I have neglected those of you who read my blog in order to focus on an effort to write a collection of short stories on the experience of epilepsy. This has meant that I could no longer siphon off my ideas into my blog postings. It has also required me to take that inward journey to see if there is really anything I can write that is meaningful or significant about experiencing epilepsy.
Today, I just couldn't resist a return. I miss the blog...
I have to say, further, that your comments have been treasured by me. I love the things you tell me, the criticisms you make and the stories you share. Some of you write only a word or two, others more, but I hope you will continue. And I promise to break away every so often to write a new posting and keep my blog as fresh as I can.
My regards and thanks to everyone who reads and follows.
Paula Apodaca

Thursday, May 6, 2010

From: Elizabeth McClung's "Screw Bronze" blog, without Permission.

Elizabeth is a cyber friend of mine. She has written the following post and she has written a book we should all read titled "Zed". I hope you enjoy her posting as much as I did:

I live a life that no one envies. And if you have a chronic disability, you probably do too.

Was that too direct, or do you want to tell me that this was choice three: #1 – Teacher, #2 – Librarian, #3 – invisible chronic illness even your relatives don’t fully research, believe and want to understand, and living the high wire emotional act of being dependant. Really?

My life is the kind of life where doing what I want, like blogging for BADD will always come behind the intractable aspects of my illness/disability. Life’s natural joy and excitement are now something to be bartered for. And that isn’t really the way things should be.

NO ONE should be born a second class citizen, and no one, particularly while helping keep many medical supply companies/doctors/medicine makers in profit, should become one just for being disabled. Yet many are. We are.

As a society we collectively set our sights too low. We can do better.

See, we have to do better. I have to do better, to learn, understand and being there for people with different impairments/disabilities/illness’. I have to fight as I can so that the quality of life of those with disabilities, and their value within the society will be higher, for those who come after me.

I believe a fully integrated society which values the insights and full participation of those with impairments/disabilities/illness’ is a better society. But that idea is not THIS society.

The problem is us. We blog in BADD often about ‘us disabled’ versus the AB, but the problem is just ‘us’: ALL of us. We all accept too readily the systems’ failure. With 1 in 7 having impairments/disabilities we already knew before we became disabled of a friend, family member, or someone close with a disability/illness and accepted that trying NOT to go through the system is what is important. 1 in 35 get MS. You really don’t know 35 people? Not even at university, or restaurants, grocery stores, neighbors? I have three neighbors with disabilities before I leave my own apartment floor. At university I knew many women with MS and what did I do to change the discrimination I saw directed at them? Where was my DAMN EMPATHY when I saw her struggling with the foot controls of a Dictaphone and heard the head of department discussing ‘how long they would have to keep her on?’

In a JUST world, I should be serving a community sentence, being forced to learn to care, or if I am a sociopath, learn to at least help.

But then are we a society of sociopaths, narcissists or just selfish people? If you want adult PEER PRESSURE, that is what every commercial, homepage and TV show sells. It is hard to have an equal and integrated society when even being facially different brings public scorn (72% of Brits feel that Susan Boyle should never have been allowed to appear on ITV’s talent show. After winning, she was offered a role on ‘Ugly Betty’).

We, collectively need to do better. My province has put on an high bonus for every time a doctor sees a patient with a chronic disease, because so many refused to take them as patients before. So now instead of punishing them for discriminating, we reward them for seeing well…us. Perhaps none of the Doctors or Specialist in BC read the Hippocratic Oath “I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” Or perhaps they never bothered to tell the doctors that they would see patients, sick people – that IS the job of doctors, to see people, well, like us. To help people….like us.

What should been done in North America and in other countries is to raise the bar of acceptable standard of behavior for doctors. If a doctor ignores the main source of information (the patient), belittles them, assumes they are lying, assumes they are lazy, assumes because they are female it is: trauma, PTSD, depression, hormones, or ‘in her head’ – a complaint should be taken as seriously as a physical complaint. Because the ignoring of her, and her condition, the delay in treatment for her chronic illness IS a form of delayed physical treatment and well being – as harmful as an assault. They DID harm, and they should, since they seem incapable of having the morals to hold to their oaths, be held accountable. Often, sadly, the entire medical system can be a form of abusive emotional, physical and psychological assault.

I have yet to be able to take a MRI, CAT scan, or any other table test, including radiation injection testing on a table where I able not fully reclined on my back, often unable to talk and breath. Not the rarest of conditions, just one two entire HOSPITALS don’t bother about.

We (society) need to do better.

Having a near 80% unemployment rate for those with disabilities surveyed when the general population is 4-8% isn’t sad, it is an open declaration of the second place status, and social status warfare view of people with disabilities. In the last few hours, I have read three items, two books, and one a major advice column, all seeing the disabled, or those with disabilities/illness’ and facilities as to be ‘used’. Hey, problem with having opposite gender children to find someplace to pee? Then find a ‘handicapped toilet’ to use instead of a man going in the women’s restroom with his girls. The two books I read, both had the disabled/chronic illness characters, the OTHER main character in the book, and both die… the main character could learn a LIFE LESSON. Both these teen books were on the New York Times Bestseller List. A new generation learning ‘life lessons.’

We can do better. Where IS the disability awareness fiction section in the juvenile fiction section of the local library? Where is the display? (probably next to the invisible LGBTQI one). But at least LAMDA has the LGBTQI awards? Where are OUR awards, our book awards, our film awards?

But we, those disabled and with disabilities/illness’ are just as bad in ignoring. We find our groups, we band together and we bunker down. How many times have I heard, “Oh, I’m just glad after six different ones I finally found a GOOD doctor.’ – so an ‘I’ll find mine and then, finally, done.’ mentality. When do MS and CFS/ME get together to talk about fatigue? When do Fibro and SMA groups get together to talk about muscle pain? Or cancer and SCI groups get together to talk about dysautomia? They don’t.

Change Society, decrease an 80% unemployment rate, hold doctor’s accountable, change medica with awards and Disability Rights ratings of major corporations? Really? Let’s be real, right? OR, are all these things, as they say, ‘tried hard and found lacking’ or ‘found hard and lack in trying’. I am not asking for those with disabilities to change society, I am demanding society change itself! When most countries have a ‘no child left behind’ program, why then is there a ‘fend as fend can’ for those needing assistive devices, employment or assistance?

I have heard countless presidents, Premiers and Prime Ministers talk about the ‘New Economy’, but never about one where leaving over 60% of 1/6th of your workforce behind is outlined. It just HAPPENS. No. It doesn’t. Not in countries with human rights and disability acts, it doesn’t ‘just happen’ is simply isn’t changed from what happened before. The: “We don’t give a damn, because they are too diverse, too ill, and we are too used to this way to change.”

How is it possible when every family MUST know someone with a disability not to organize for basic things like recognizing that in the same way you get shoes and clothes after an accident, not understsanding that getting assistive devices for impairments are the same? How long until recognizing that the old models of looking at work as an assembly line (created in the 1910’s) and every worker as the same is a LIE. Right now we have the technology to employ as many of those with chronic illness’ and disabilities at the levels they can and desire to work. Right now. Except the very companies that make the software, that run the platforms, the top 500 companies are not rated on how they have advanced in employing numbers of those with disabilities. Not even in the Human Rights index. And the government… is easier to simply offer money, then portray those on disability as cheaters. OUCH, the BBC disability website regularly runs news highlighting cheaters caught on disability.


I went to the optometrist and it was ‘assumed’ I was on ‘blue’ which must be some code for disability welfare because once the worker found out I was actually using employment blue cross, they were rendered speechless.

That same day the paper ran an ad on how a half marathon is fundraising for wishes for people with terminal cancer…because the last director stole $100,000. I am positive he was not disabled, or a cancer survivor. He was just another of those who handle the programs, determine OUR objectives, all without talking to us. . From Crip camps to Respites, there are workers who want to talk to significant others, who want to get home, who want to have a paycheck, but they do not see us as the boss. Yet, without us, there is no job. We ARE the job.

I asked how often the care feedback forms came and when there is government review and implementation. I was looked at strangely. The managers, the RN managers, the health care middle managers might have feedback forms to give to government about client care….but what does that have to do with me?

“Errr….I’m the client.”

I am more than my wheelchair, I am more than my breathing device, I am more than my illness, my disability. And so are all those others out there. So are all those with invisible disabilities. So kick it in gear society, kick in it gear about real equality because we all know someone, and we all know the stereotypes (if we didn’t we wouldn’t keep saying, “Kill me if I ever get like…..” – what? Like me?). Stop trying to find the loopholes to the good doctor, the small good parts of the system and accept that it is broken.

Burn it. Rebuilt it. It wasn’t an accident that every wheelchair user in hurricane Katrina was killed. I was fascinated, so I watched 4 disc documentaries, washed away, left behind, left to die, left without medicine and without care for days…in a country that calls itself ‘The World’s Superpower.”

The world is seen as a comic book, according to language. But if a ‘power’ isn’t used to help (much less a ‘SUPER power’), I would kindly say, “What use it is?” But what I think is, “Well, isn’t that what separates the Heroes and the Villains?” It IS a choice.

Saturday, May 1, 2010

Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)

We hear the term “controlled epileptic” and we think of a person with epilepsy who only needs to take his medicine as he has been told to do to be able to control himself and his seizure activity. Reality for persons with E. is that "compliance" or the taking of one's medication as ordered, often bears no relationship to any specific level of seizure control. In other words, just because I take my meds is no guarantee that I will stop having seizures.

Guilty of both a misunderstanding and a misapplication of the term “controlled”, we are seriously wrong about the epileptic person to whom the term is applied and about the abilities of medical science (e.g. pharmacology) to meet our social expectations.

Most of us make this mistake honestly enough. Our society, like many others around the world, places a premium on moderated behavior. We refer to the act of moderating one's personal behavior as "self control" and identify the strength of character necessary to make such a personal exertion as "willpower". When we think of someone “losing control”, we think of an individual who stubbornly refuses to make use of his willpower to control himself.

We apply this same train of thought to a seizing person with E.. We view his act of seizing as somehow related to his willpower, character or intent and equate it with either disobedience or rebelliousness. Acts of disruptive misbehavior in a public setting, e.g. temper tantrums or seizures, are unacceptable to us and people who put on such displays are “out of control”. Having to witness out of control behavior makes us uncomfortable, distresses us and sometimes angers us.

A few years ago, my husband and I went to visit a friend in the hospital. While sitting in her room, I had a tonic-clonic event, i.e. a convulsion. Nurses were summoned, my husband attended to me, and when he asked them for assistance, they called security. Later, when we were leaving the hospital to go home, the nurse pushing my wheelchair leaned over to me and asked whether "...we had forgotten to take our meds today?".

As insulting as this sounds, it is all too common a response. Persons who should know better by virtue of their professions cannot resist the notion that somehow persons with E. are simply seizing to get attention. The notion of impudent and willful seizing is utterly ridiculous.

Still, there is a desire to believe that the controlled epileptic is a possibility. The idea persists among professionals and non-professionals, as well as among persons with E.. The differance is, persons with E. understand the distinction between the medical application of the term "controlled" and the ordinary use of the word. Too many professionals continue to insist on blaming the patient, rather than admitting that the treatment is insufficient.

The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.

But what authority are we speaking of and where did it come from?

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, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?

In 2002, I read a copy of an email exchange between university administrators concerned with how best to handle students with E. who persistently frightened faculty and fellow students by seizing on campus, sometimes during class meetings. Shamefully, the initiator of the exchange was both a Doctor of Pharmacology and of Nursing and should have understood better than anyone the meaning of "control" as related to her students with E..

She queried her colleagues in cyberspace, seeking to know if any of them were experienced with this sort of situation. The replies were varied, but most offered that the best way to handle this sort of disruptive willfulness was to treat it as a problem of student conduct or behavior and not one of disability. They suggested that an "involuntary medical withdrawal" could work constructively in the situation, and in the student’s best interests. The conspirators pointed out that this was a good strategy for skirting the Americans with Disabilities Act, as well.

A few of her respondents mentioned taking such actions at their own universities, regaling one another with their success stories: one student eventually transferred to another university altogether. Problem solved.

What they all seemed to be unaware of was that twelve years earlier, before the email exchange took place, a woman with E., named Barbara Waters, gave testimony before Congress about her own situation at a state college in Massachusetts. She was being harassed and discriminated against by administrators at her college, who wanted to use the tactic of "constructive dismissal" to force her out. She testified she was about to be expelled from school: her college administrators told her that her seizures were "disruptive" and that her presence on campus was "considered a liability" to her school [2 Leg. Hist. (Barbara Waters)].

Thanks to Barbara Waters and others for speaking up. The results have been good for us all because, since 1990, the discriminatory and harassing tactic of “constructive dismissal” is illegal.

The meanings contained within our use of language often include unstated assumptions. Delving into those assumptions requires our participation. To change how people feel about persons with E., we have to be willing to open up and share our knowledge. It is the only way to dispell harmful and simple-minded understandings from either remaining or becoming widely held social expectations.

The Bell

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