October 31, 2013
April 10, 2013
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!
February 14, 2013
Here is a Victorian Valentine's Day post card for you to enjoy. In an earlier post, I wrote about the history and meaning of Valentine's Day, so check it out if you like. Meantime, hope this finds each of you well and in good spirits!
February 13, 2013
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.
DO IT ANYWAY!!! SPEAK OUT, STAND UP FOR YOURSELVES...
Rhead, George Wooliscroft & Louis. "Guinevere's Jealousy" from Tennyson, Alfred. Idylls of the King: Vivien, Elaine, Enid, Guinevere. New York: R. H. Russell, 1898.
December 19, 2012
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.
As it turns out, it was not just a seizure, but two in a row.
May 2, 2011
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...
April 1, 2011
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.
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
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
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.
November 10, 2010
May 6, 2010
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…..so 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…..it 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.
May 1, 2010
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.
April 8, 2010
It is not an easy thing to talk about one'’s family. Conflicts abound and committing fact to paper seems to fall short of the true experience of family life. Each member of my own family is more significant and more powerful than the basic relationship sketch. This is because I am a product of the contextual elements of my life among my family and from within my disorder.
I had two parents. My mother was the most beautiful woman on earth and my father the world'’s most handsome man, and I belonged to them.
Their first child, my older sister, was heroically disabled: the circumstances of her birth were remarkable enough to gain her press coverage for an entire year. Anyone and everyone could see that she was blind and her condition pulled on the heartstrings of them all. I was three when my disability surfaced. No one could tell, unless I was in the violent throes of a convulsion, that anything was amiss. My family overcame their distaste and fear of my epilepsy and cared for me, with the caveat that I would outgrow it one day, if I willed it strongly enough.
A remarkable feature of my life both as a child and as an adult is anger. Not the casual anger that gives expression to the mix of frustration and pain as when one strikes her thumb with a hammer, but a flickering, tentative wisp of emotion that ignites over time and across circumstance toward an explosion, which leads inexorably to oblivion. Owing to the nature of my condition, epilepsy, and the location of its focus in my brain, the anger I sense is often a warning for the onset of seizure activity.
As the sensation grows, I feel an impending doom, a kind of darkening on the spiritual horizon. It can be overwhelmingly intense, stimulating morbid thoughts so that even as a child I knew what it was to contemplate suicide; and I have been long terrified that I would one day relent in the throes of such thoughts. The nearer I come to the explosive event itself, the keener the inconsolable sorrow and sense of desolation become. And then, when the pressure has sufficiently built from within, an explosion of some kind occurs.
Commonly, it is the convulsive action of a tonic-clonic seizure. Sometimes it spends its built-up energy in a less harmful way, as an uncontrollable tremor, a momentary lapse of consciousness or a strong sense of deja vu.
Regardless how the energy spends itself, the end result is the distortion of my life's continuity.
I am certain now that I adapted to living within this distorted reality: I employed tricks of personality and intellect. I learned to read cues in conversation and fill in the empty spaces in the continuum for myself should I lose consciousness briefly; to ask clever questions that would provide me with answers if I didn'’t know how to respond or, to glean from the questioner and his question some nugget that would allow me to make an apparently insightful remark to someone else in the room---in other words, stall, distract, and delight. In so doing, I could only be accused of eccentricity, but never disability.
I transformed myself purposefully, at the age of twelve years, from an introverted child to an extroverted teen so that I could brush away any lingering mark of epilepsy. The urge to transform myself into a perfect being was motivated by a strong sense that I needed to vindicate my mother from the disaster of having two disabled children.
This was born in me one moment when I was about four years old. My sister'’s worth as a human being and my secret understanding of my own worth, as well, was delivered as a casual comment between two women walking opposite my mother, sister and I on a public sidewalk: "“Oh, look how sad...if I were her mother I would have prayed God she had been born dead."
My connection to my mother was primary and endowed with magic. Not fairy-princess magic, but the magic of mythic action: my mother was the one, I believed, brought me back from the terror and oblivion of each convulsion I suffered, and I further believed that without her there to bring me back, I would not return to consciousness. I would remain trapped inside an unconscious blackness until I died.
The two women'’s exchange began slowly to erode my confidence in my mother'’s love and loyalty toward me. If these women from the outside world felt that way, then did she? Did she pray that God would take my sister and I? Did she pray God to take me? Perhaps she did: there was a third child born to my mother and father, also disabled, but she did not live beyond six months of age. She died in our house and everyone said she was better off now and with God. Her death seemed to underscore for me the possibility I was treading on very thin ice as a disabled child.
It had been promised to me that if I willed it strongly enough, I would shed this condition myself. Even my mother, who truly knew better than did the rest that I would never be rid of my condition, suggested that I might try harder to “will away" the onset of convulsions. But, I never seemed to try hard enough and so, in the end, all I could feel about myself was that I had failed. Solace for me was to simply not talk about it any more with anyone, except to mention from time to time that I had once had epilepsy when I was a child.
I was 16 years old when a small town doctor told me I had been cured, because I had no convulsions for over two years. Even when the convulsions returned before I turned 17, like my family, I dismissed them as non-events and clung to the notion I was over the epilepsy for good.
If I could but make the world believe I was perfect and normal, all would be secure and safe. Certainly, the exchange between the women on the street was a powerful one and told me that if I was to feel safe in my own home, among my own family, then I must not be disabled. Since my sister had a value to my mother by virtue of the sympathy she garnered, she would be fine, as long as her existence was an anomalous one. But it was up to me to accommodate and adapt out of my epileptic state. If I had the will, certainly, I could do that.
The truth is, I cannot do it.
I am epileptic. I am not a person with epilepsy, nor am I someone who happens to have epilepsy. My memories are colored by it, just as many of my memories have been obscured by it. I cannot recall a time in my life when my epilepsy was not a part of me: when it did not add to or detract from each experience, decision or act, and it has influenced every step of my development as a human being.
There are still those who feel I am passing as disabled, because I appear whole. They see nothing at all wrong with me. Others believe with an equal conviction that I am malingering, nursing the claim of a disability to achieve some secondary gain from the status. Neither is true, and yet I have experienced this suspicion since I was a small child, whose only society was the family circle.
Even as I aged and moved into conventional society, the features of my childhood experience tagged me: that singular comment from a passing stranger on the street remains with me, as does the distinction between my sister'’s heroic blindness and my ignoble epilepsy. After all, there were no medications that would or could be offered my sister to remedy her blindness, but I had only to take my pills and I might be cured.
March 17, 2010
When Cassidy Megan was nine, she wanted to do something fantastic for folks with epilepsy. She knows first-hand what E. is like, because she shares epilepsy with the rest of us. She knows how lonely having E. can make you.
December 31, 2009
December 23, 2009
October 21, 2009
There is a part of me that has not grown up. Evidenced, I think, by my personal love of Halloween. To me it is the perfect holiday. In some ways, better than Christmas, Halloween carries with it a musty sense of ancient times. It makes me think about all the various ways we have tried to control our epileptic expressions: first by magic, then by prayer, then by drugs and potients, and surgery, and today with biometric devices.
July 13, 2009
Many of us regularly engage with our community via emails, listservs and chat rooms. If you are like me, you proceed on the assumption that those you are in contact with share the same condtion. After all, why would anyone lie about that! Still, it is important for all of us to be aware that there are some folks who, for their own very deep seated reasons, fake symptoms and tell us stories to belong.
July 9, 2009
I just finished reading Peripheral View. I have to say that to my surprise there were some really accurate portrayals of characters and their feelings about persons with epilepsy. This is not an apology for those feelings, but rather a solid statement of ways in which folks still carry around out-of-date information about our disorder.
“My Aunt Lucille had a severe case of epilepsy; it began when she was a child in the 1950’s. Drugs for the disease weren’t what they are today, and she was placed in nursing homes and group homes as an adult. She spent her entire adult life in these places. As a child, I was afraid of her or tried to ignore her— looking at her with a peripheral view—, but as an adult, I volunteered at the place she lived and got to know her. While I was embarrassed by her, she grabbed onto my hand and announced to everyone she could that I was her niece. That alone deeply touched my heart. I learned that she had the same feelings as any of us, that she was embarrassed by the helmet she wore to keep from hurting herself during seizures, and most importantly, that she had found someone special. She wanted out of the institution, to marry him--to have love, family, and her own home. A caseworker, and my sister Roxann Dunst, helped her become independent and fulfill her dreams. Those peripheral views, and Aunt Lucille capturing my heart the way she did, was the inspiration for Peripheral View.”The novel is 328 pages, paperback, and just the right size for taking along when one has waiting to do. I was uncertain about the book when I began reading, but the story became so compelling to me that I found I could not put it down until I had finished reading it. I would recommend it as a solid pick for summer reading.
and then when they go buy the book there will be a place to enter a special promo
code. The code for this is PEARL and the promotion will run through the month of
July." Seems like a good deal... double click the post's title and it will take you straight to the site to buy the book.
June 24, 2009
May 8, 2009
How much can a head of hair weigh? Is it enough to cause your neck from being able to hold your head up straight? I have heard that hair can weigh from .5 to 3.0 ounces an inch--- how heavy is that, really?
May 7, 2009
Illness personal narratives are, by their nature, sad, grim tales told by sufferers. Being around those who suffer can be nearly as unbearable as the actual suffering itself. Even reading about suffering can take its toll. So, in an effort to keep the dialogue going about E. without causing my readers to suffer too deeply, I offer a glimpse into one of the human being’s best coping strategies: humor.
Do people with E. have a sense of humor about themselves? Yes. Do we use it to give ourselves a break from our own illness experiences? Absolutely.
Humor specific to a topic or activity, it relates to experiences we share through E. and it offers the same value all humor offers: insight.
You know you have epilepsy when there are two cars in the driveway and you don’t drive.
You know you have E. when...someone asks you if you're alright & you didn't know anything was wrong.
You know you have epilepsy when you find yourself eating lunch for the second time in a row.
You know you have epilepsy when your dentist worries about losing his fingers...
You know you have epilepsy when you can decipher the following: I was dx'd with JME by my epi with an EEG, (had MRI and CT), Rx was Lamictal 100 mg p.o. tid, which controlled the jerks, absence, SP's, atonics, and GTC's...
You know you have epilepsy when holy water burns you.
You know you have epilepsy when your roommate doesn't know whether to call 911 or a Priest.
You know you have epilepsy when your Meds cost more than you make in a month.
You know you have epilepsy when you take meds to help the meds you take.
You know you have epilepsy when upon having a burst of energy you're asked "are you having a episode?"
You know you have epilepsy when...you have a seizure in your sleep and smack your spouse...and they ask ...was that a spell or are you still mad at me ?
You know you have epilepsy when...Sleeping till 3:00 pm is normal...yet not sleeping at all is too.
You know you have epilepsy when you hear ten times a day from your loved ones…did you remember your "pills"
You know you have epilepsy when your significant other pats himself on the back for his prowess that night and you have no recollection for the event...
May 1, 2009
A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.
Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.
But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a "disturbing precedent."
Andy Rickell, executive director of disability charity Scope, told the Press Association: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.
"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.
"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."
How do we feel about disabled sex and reproduction? As a society, there are those who have strong feelings against disabled sex and reproduction. I know as a woman with E., I was warned all my life that I would never be able to have children and that I should never have children.
To my mind, the warning could have been more distinctly articulated: something more like: don't have children unless you can care for them, unless you are married or have employment or the like. The same kinds of warnings parents make to their non disabled kids.
Certainly, I have taken this piece a little far afield, but I guess my point is still a simple one: I am happy to be alive and I don't want to be engineered out of existence, by anyone.
If the day ever comes when someone wants to know whether to let me die "with dignity" or continue living my "blighted life", what I "would want for myself" is to be left alive--- I must say that I am, under no circumstances, in favor of euthanasia, nor would I ever sign a DNR for myself. Too many people have been too anxious for too long to get rid of us to ever let me see "mercy killing" as an option.
I plan to live to be at least 112 years of age, blight and all.