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...

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

diagnosis.

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.

Cordially,

Paula Apodaca

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.

Tell Me About Yourself...(my 1st posting, reprinted)

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.

Munchausen by Internet

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.

Marc D. Feldman is a prominent American psychiatrist who has written extensively on the problem Munchausen's disease. Since many of us participate with online communities and chat room, I thought it might be interesting to read some of what the good doctor has to say on the subject. You never know when it might come in handy... So, with permission, I have taken the liberty of lifting a couple of passages Dr. Feldman wrote on the subject. I have included references at the end, and, if you double click the title of this post, it will take you to the page online from which the material was gleaned.

For decades, physicians have known about so-called factitious disorder, better known in its severe form as Munchausen syndrome (Feldman & Ford, 1995). Here, people willfully fake or produce illness to command attention, obtain lenience, act out anger, or control others. Though feeling well, they may bound into hospitals, crying out or clutching their chests with dramatic flair. Once admitted, they send the staff on one medical goose chase after another. If suspicions are raised or the ruse is uncovered, they quickly move on to a new hospital, town, state, or in the worst cases — country. Like traveling performers, they simply play their role again. I coined the terms "virtual factitious disorder" (Feldman, Bibby, & Crites, 1998) and "Munchausen by Internet" (Feldman, 2000) to refer to people who simplify this "real-life" process by carrying out their deceptions online. Instead of seeking care at numerous hospitals, they gain new audiences merely by clicking from one support group to another. Under the guise of illness, they can also join multiple groups simultaneously. Using different names and accounts, they can even sign on to one group as a stricken patient, his frantic mother, and his distraught son all to make the ruse utterly convincing.

Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factititous Internet claims. The most important follow:

1. the posts consistently duplicate material in other posts, in books, or on health-related websites;
2. the characteristics of the supposed illness emerge as caricatures;
3. near-fatal bouts of illness alternate with miraculous recoveries;
4. claims are fantastic, contradicted by subsequent posts, or flatly disproved;
5. there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;
6. there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
7. others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.

References:

Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672
Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausen
by proxy. Western Journal of Medicine, 168, 537-539
Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley & Sons

Invisible Illness Bingo by Anna Ham

DOUBLE CLICK ON THE BINGO CARD TO ENLARGE IT FOR READING...

How Heavy is Hair?

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?

When I was a girl of eight, about 1960, my Mama went to see a neurologist about me. She patiently explained to this demigod about my epilepsy and about the seizures I had. She also told him that I often had seizures when she brushed my hair. She explained that I had shoulder-length red hair, and that I could not reach to brush it myself, so she did it nearly every morning.

"Hmmmmm", said the demigod. He seemed very interested in my hair. In his most serious and convincing tone of voice he said "I see the problem--- her hair is too heavy for her head. It will have to be cut off and kept short, if you want to relieve her seizures. The weight of the hair is creating too much pressure on your daughter's head and it is causing her to seize."

Mama thanked the man and returned home. She had been very impressed with the way he assessed the situation without even seeing me.

She went to a drawer in the bathroom and got out her scissors. She waited for me to come home. She called me into the kitchen told me what the doctor told her, and then, like lightening, moved in for the first snip.

"Well", she said looking at one of my braids that had fallen to the floor, "we can't leave it like that!" so she snipped off the other braid. Then, she ran a comb through my hair and cooed that it would be much easier for me to take care of now... Over the next fifteen minutes, she trimmed and fussed and played with my hair until she finally handed me a mirror and pronounced that she had given me a "Pixie cut".

I was 25 years old before I let my hair grow out again.

Because a doctor had said it was the way to control my seizures, I firmly believed that long hair would cause me to have more seizures, so in spite of my adult defiance, I began preparing, waiting for the next seizures to strike.

Today, my hair is down the middle of my back. Still naturally red, although I am waiting for it to turn gray. But I cannot help wondering what Mama was thinking when she listened to the doctor who said my hair was too heavy for my head?

You Know You Have E. When…

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...

My Blighted Life... BADD Contribution 2009

As we step into the brave new world of the 21st century, some notions from the 20th century still linger. One of those notions, eugenics, has to do with the "self direction of human evolution".

A common comment I hear from within our community comes in the form of a question: Can you inherit epilepsy?

Until recently, I had not fitted the pieces of

the puzzle for this question together. When one

asks if the source of E. is hereditary, what one

seems to really be asking is whether or not it can

be "caught" by one's progeny from a parent.

If one considers the question more deeply,

one can begin to see a connection between the medical model

and fundamental eugenics philosophy: in each case, it is the disabled individual who is the problem and it is her

disability we are anxious to cure. Either by medicalized re-mediation or via genetic exclusion. Something they feel needs to be redirected or reshaped for a better future, I suppose.

Rather than seeing society as placing obstacles in the path of the disabled' participation and inclusion,

those who still hang on to these outmoded explanations continue to segregate all of society into an

us versus them reality.

Many of us are at least vaguely aware of Professor Singer, the Australian professor who has come close to equating

disabled children with the concept of the "useless eater". Singer's support for euthanizing disabled babies could lead to disabled older children and adults being valued less as well. When Peter Singer attempted to speak during a lecture at Saarbrucken he was interrupted by a group of protesters including advocates for the handicapped.

He offered the protesters the opportunity to explain why he should not be allowed to speak. The protesters indicated that they believed he was opposed to all rights for the handicapped. They were unaware that, although he believed that some lives were so blighted from the beginning that their parents may decide their lives are not worth living; in other cases, once the decision is made to keep them alive, everything that could be done to improve the quality of their life should, to Singer's mind, be done.

So is this the same thing as feeling an intrinsic value for all human beings or is Dr. Singer thinking of a social redirection??

Yet, via Singer's utilitarian approach, he does seem to leave open the door to the possibility that

society can and should look to the future and make every effort to reshape that future.

But what do we do about the ordinary folks who have a distinct fear of our numbers increasing?

Take for example the case of the mother in Britain who wanted her daughter's sex organs removed to prevent

her going through the discomfort of menstruation--- I don't believe this to be the real "interest". What I believe, no matter

how immaterial, is that the mother had grown more and more anxious over the notion of unwanted pregnancy than

anything else...

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.

The Day I Drowned at Tin Can Beach, California

I shouldn’t be telling you this--- I don’t mean it’s a secret, I just mean, I shouldn’t even be here. The summer after I had just turned five years old, I drowned in the ocean and was saved by my uncle Don.

When I was little, summer meant bundling up towels, blankets, bottles of Sea and Ski, Noxzema, lawn chairs and telescoping forks, hot dogs, buns, mustard, relish, marshmallows, pots of chili with mushrooms, and a giant metal tin of saltines. We never owned a cooler of any kind, so the afternoon before our seasonal trip, Mama would go from house to house, neighbor to neighbor, in search of a Coleman’s cooler or a five-gallon thermos-like thing for lemonade to borrow for our trip.

Mama’s lemonade was good for keeping mosquitoes away when we stayed in the city. Hot summer evenings outdoors were fun, but the next morning my sisters and I always looked a little like we’d been pin cushioned--- unless we managed to spill enough of the sticky beverage on our legs and arms to keep the bugs away. At the beach, however, lemonade was not a good choice for a beverage because instead of keeping bugs away or killing the bugs that happened to get on you, the sticky drink made sand cling to you in all the wrong places. It made life uncomfortable.

Every summer, we begged for Hawaiian Punch. It seemed like a much better choice because it was pre-mixed. After every vote, we lost, in large part because lemons were free and readily available, everyone had sugar, and there was always lots of water from the tap, no matter who’s house you made the lemonade at. Hawaiian Punch, on the other hand, had to be gotten from the market, and at 49 cents a bottle, it was just too much of an extravagance.

Mama would try to get us interested in some adventure we could claim for ourselves, like shell collecting or such. The best was catching sand crabs, and Mama suggested that we should find a suitable tin can on the beach in which to capture them. No need for individual pails, that way. Besides, we didn’t have any.

So, like other years, this is how the trip to Tin Can Beach began. After a week of planning, map reading and arguing about the best route to take, the cars would be loaded, food prepared, and trunks packed for the trip. It took a couple of hours to get from our house in the San Gabriel Valley to Huntington Beach and then to the best beach itself, just south of the pier--- Tin Can Beach.

The caravan set out from our house at six in the morning. We arrived by ten, and were done setting up by noon. Including aunts, uncles, cousins and spouses, there were about twenty-five of us.

Mama slathered Sea and Ski all over me and then told me to play as much as I could under the rented umbrellas. By late afternoon, my Aunt Fern and her husband, Ward, had their long bamboo poles out and were casting lines out into the surf. Others were throwing and catching a ball, some were making sand castles, and a few of us were hunting down tin cans for the sand crab hunt.

On the highway side of the beach was a huge berm, an earthen embankment created in part to scrape away some of the debris and junk on the beach itself. There, at the foot of the berm, we hunted tin cans. But, as was the case in 1957, one had to be careful hunting tin cans because the lids of the cans were sharp as razor blades and jagged as broken glass, so a cut from one could ruin any day at the beach.

I found my tin can early. An old Del Monte Sliced Peaches label still stuck to it. I also found a metal spoon in the sand left behind by someone on some other day, so I was equipped and ready to take on the water and the sand.

I moved from the berm to the edge of the water and waited for the surf to roll in and out a couple of times. I sat down on the wet sand and scanned its smoothness for bubbles. I didn't think I would have much time to hunt for sand crabs because I was already beginning to burn painfully at my shoulders and the ties of my sun-suit were beginning to cut into my skin.

I recall digging into the sand, scooping it with my fingers and feeling for the sand crab. I recall having about half a can of sand and crabs. Then the tide came in, knocked me over and all I can recall was a deep blackness and a claustrophobic nausea that was suddenly shattered by one of my uncles. I woke up, hanging upside down, midair, my uncle waving my little body in the wind as if he were trying to dry me off. It was his version of CPR.

I had been underwater, seizing, and the tide was beginning to pull me out to sea. My uncle had been afraid I had drowned, because I was as pale as a ghost and a little bluish around my lips. He only became relieved when he saw the circulation return and my lips "pinked up". After he set me down, the world began to spin and I heaved up seawater and oatmeal all over the sand. Then I seized again, so they released my sand crabs, packed up their things, and drove me home.

They didn’t know it back then, but the early hours, the heat, and even the excitement had all contributed to antagonizing my epilepsy. I often wonder if the experience repeats itself when I have a convulsion, because the feelings I have are like being under water and not being able to breathe, and the sensation I have is like water moving over my face, so that even when I open my eyes I am still unsure if I am back among the living.

Perhaps the event imprinted itself on my memory somehow?

The Best for Last?

I have never been able to outrun one specific memory of my childhood.

In 1959, Mother took me to St. Luke’s Hospital to have my epilepsy tested. We arrived in the morning, sat together for three hours, and then followed a Nursing Sister along a complicated set of corridors and wrought iron and marble staircases.
We descended. Deeper and deeper into the bowels of the hospital we walked, until, at the end of the tour, we came to a cramped little space marked “E.E.G. Lab”.

The technician and my mother seemed to get on well. They chatted for a long while. Finally, the technician began a longer process of gluing electrodes to my scalp. It was not unlike getting a Toni, the home permanent for little girls.
At the end of this very long process, I was exhausted and my nerves were running high. I had a pain about the size of an apple in the middle of my stomach and I wasn’t sure what came next.

Next, the technician had me lie on a cot and she told me to close my eyes and see if I could fall asleep. She quit talking with my mother, and suddenly everything was quiet. I began to drift off and finally went to sleep.The technician waved something under my nose to wake me.

Apparently, I had drifted very deeply asleep and she wanted me back, awake, in a hurry.

The smell went straight to my brain and did the trick.

Next, she lowered a lamp over my head and told me to stare directly into the center of the bulb, without blinking or closing my eyes. When she turned it on, it began to strobe slowly. She made a second adjustment to the lamp and it picked up the pace of the strobing considerably. I thought my head was going to cave in, until she said I could shut and cover my eyes.
She adjusted the lamp back to its most comfortable setting, and then she directed that I should pant like a dog and watch the light. I was supposed to pant for three minutes, looking into the light all the while.

About 20 seconds into the panting, I tried to stop. The technician told me that if I stopped, she would tell my mother that I could no longer watch television, as a consequence.

After the panting-like-a-dog sequence was finished, she asked me to lie quietly. She took the lamp away, and darkened the room. Some time passed, and we were finished. She took the electrodes out of my hair and she warned my mother not to try to use a brush on it because it would need to be washed out with a special shampoo. She gave my mother the shampoo and we left.

I thought we were done for the day, but no. Mother had a surprise for me : a blood test.
We walked down one more flight of stairs into a laboratory. A nun in full habit greeted us. She slipped into a smallish apron and sleeves and tied a rubber hose around my arm. Mother slipped away. I felt awful. Just as the nun slipped the needle into my arm, I vomited all over her. Then I seized.

When we finally arrived home that night, Mother told me she would never do that again, and I made the same promise back to her.

I pray for the soul of that nun often. I have insisted to God that it just slipped out.
To date, God has never brought it up, but I think extra time has been added to my stay in Purgatory for Defacing a Habited Nun.

Epileptics, Please!

Since coming out as epileptic, I cannot count the numbers of persons who have come to me quietly to say they "used to have epilepsy" but that they "grew out of it"... 

This is a kind of self identification that hedges one's bets, don't you think? Most of us know that if epilepsy comes into your life, epilepsy will remain in your life. Sure, it can remit... you can go for really long periods without it, but quite often, it will return with a vengeance. 

Those of you who feel you have either overcome E. or that you have outgrown it still need to see a doctor once in awhile. You need to keep an eye out for it's return... At last report, there has been no cure for epilepsy presented. Even surgery only promises minimal results for some people. 

Stop taking half-way measures! Stop shoving epilepsy to the back of your consciousness. E. can be dangerous, particularly if it catches you off guard. Be smart, be safe---go all the way out of the closet and admit having epilepsy.

You don't have to lie, you can let folks know that your E. has gone into remission and that you are not having seizures presently. It is probably a really good thing to let others know that this happens to us, that we are sometimes free of seizures for long periods of time. Some of us are even able to go off our meds when that happens. But, we are never free of E., neither are we cured of it... we must always use our awareness to see if it is coming back.

If it seems like it is coming back, we need our docs and our meds all over again, until the next remission.

One in one hundred people have E. and they need to hear from the rest of us that it is OK to say so. They need to know that there are others of us talking about it, writing about it, etc. and that we can offer advice and let them know they are not alone with this disorder. 

So, stop telling others you "used to have epilepsy"--- wake up to the notion that you still have epilepsy! You are not cured of E.--- but you may well be in remission from it! 

Had Enough of E., Yet?

            I have been doing E. since I was 3 years old. I have been taking medications for at least that long. The auras, the convulsions, the unsteadiness, the memory problems, the weird dreams or no dreams, the chewed up mouth and tongue, the incontinence, have all left me wanting out.

            Then, when it remits, and I don’t have seizures for a long stretch, I think “Oh good! It’s finally gone!”… Well, not really, because it comes roaring back. And during the time it is in remission, I begin to anticipate it’s return.

            I have to say, I hate all of it! I have had enough of it!

            But, so what! It is with me for the rest of my life. So, I work on it, I work on the feelings I have about it. I try my best to settle down and realize that I could be much worse off…

            I hear and read comments from others, on other blogs, in other chat rooms, folks with E. who are fed up and want to take some decisive action to convince themselves they are don with E. and everything about it. I hear folks say they are just gonna quit their meds. Or, that they are gonna quit seeing the docs. Believe me, I really understand this, but, unfortunately

This is not the way it works.

            The consequences to stopping meds can be a return of seizures. If you stop seeing the docs, you will lose the continuity of care they provide you.

            Try something new: see a psychologist that deals with disability adjustment or behavior. This might be helpful. You will have to be prepared to teach the doc all you know about your condition, because they are not well schooled in our disorder, but it can help. They can help you get past the fear and despair perhaps.

    

        In the end, each of us knows we have to deal with E. We cannot escape it once we have it. But, we can work against it the best ways we know how. 

Epilepsy and A View of the Self...

I know that when I think of myself, I usually try to leave out epilepsy. I know it is a part of me, but I prefer to think of myself in more expansive ways that leave out the invisible marring epilepsy has left behind in me. 

To the right is a painting by Evelyn de Morgan. I love her work and like to include it because of the themes she enjoyed painting. This painting, "Luna" comes close to what I think of myself. Ethereal, healthy, protected, redheaded. No trace of E. visible!

Still, one has to account for the damage E. has done to one's psyche and so another painting below and to the left is a kind of grim example of how I feel having E., at least at times. Not always, just sometimes.

Often, I feel as though I have burdened my family, my friends and I am fearful I will burden strangers with my condition, as well. It makes me feel estranged from humanity, even freakish, and so the second, contrasting illustration is a kind of visual description of those feelings.

Still, if I feel like this, how do others feel about me when they know I have E. It is a question that should be asked, not for self-pitying reasons, but in order to get a better handle on the ways people percieve epilepsy and those of us who are disordered by it.

I know that many folks have a sense that E. somehow makes those of us with it degraded in some way. As if we are less because of it. As if we have been polluted by some evil.

There are others who  use the presence of E. as a means of acting violently against the individual with it. Parents who beat their children to cure them of E. are not uncommon. 

And many of us know how it feels to be refused housing or employment once our condition has been revealed. 

Some of this is fear... Some of this is cruelty, to be sure. Some of this kind of behavior is learned cultural response. E. has been around as long as there have been humans, so there has been plenty of time for people to develop a cultural reaction to its presence. 

But no matter what one's experiences have been, one must learn to cultivate a different self image. I like the self image of "Luna" and I cultivate it, and as I grow stronger, I am more and more able to affect others toward 

creating a better self image to go along with a stronger interior life. Then, the face I present to the world becomes stronger and better able to live in our world, even though I know there are still many who feel negatively toward my condition. 

I will not allow them to express that toward me. It has to stop somewhere.

Life, Death and the Long Haul with E.

To the right is a painting by Evelyn de Morgan from 1916. It is her commentary of Death on the battlefield. Double-click the image to see it enlarged...

Experience with E. tells us that we should consider the recent death of Jett Travolta a tragedy… However, that same experience suggests that we have lost something more than a fellow sufferer.

There is little in the way of a “public face” for epilepsy. John and Kelly Travolta could do much for our community by simply admitting to epilepsy, rather than hiding from it. I confess, I am not a doctor, and I am not an epileptologist to be sure, but I do have decades of experience with this disorder.

We all know that several of our AEDs are used for multiple reasons beyond seizure control. We also know that seizures can come from other conditions, including heart problems. So, it would be unjust to simply act as if we know better about the Travolta death.

Still, the information is provocative and suggestive of an epilepsy disorder.  So, the only conclusion any of us should reach is that we are hearing the absolute truth from the news reports or that there is a greater reason for the family to resist saying the word out loud.

Bigotry still exists in a pronounced fashion when it comes to E. Discrimination and stigma are elements each of us live with, and these things produce in all of us a “selective” kind of revelation of our disorder to the outside world.

I am of the hope that at some time the Travolta’s will acquiesce and offer whatever support they can give to our community. Preferably, a public acknowledgement of E. in their family, because it would help all of us.

It would encourage donations, it would encourage research, it would encourage others to speak out about epilepsy. I could help end the stigma, the discrimination, and the bigotry we live with.

 Still, the family has to make their own decisions, come to their own resolve, and they should be afforded their own time to grieve without supposition or criticism.

Epilepsy kills. It can be a dangerous, deadly condition. Take your meds, see your doctors, and live the best way you can.  Like you, I am in this struggle for the long haul.

Protecting "Normal"...

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

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

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

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

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

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