tag:blogger.com,1999:blog-319843172024-03-14T00:53:57.041-07:00E. is for Epilepsy by Paula ApodacaI have been epileptic for 65 years now. I have lived in fear, shame and self-doubt. I have learned to push back to make room for a life, with some of the ordinary comforts and joys life can bring. Our lives are gifts. But we are responsible for living them. I promote speaking and writing about E. We can all make a difference so keep reading...Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.comBlogger85125tag:blogger.com,1999:blog-31984317.post-56695979375743283582021-04-16T14:21:00.002-07:002021-04-16T14:26:13.697-07:00A Scent of Angels: Falling into a Tonic Clonic Seizure<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdpMVCny4pLiQfprlZlWTmGZ-T9LrLNEETW5aJlqkNjyV1pMkzAFDt3SFfNDMBOuxEjfA-mMOg53jMAKy2IEauIRlVg9jucLJzcP7icgeQiwHyXZlt6FOHVp5bgA1VLXS4IoP/s1600-h/Giotto.mourning.750pix.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdpMVCny4pLiQfprlZlWTmGZ-T9LrLNEETW5aJlqkNjyV1pMkzAFDt3SFfNDMBOuxEjfA-mMOg53jMAKy2IEauIRlVg9jucLJzcP7icgeQiwHyXZlt6FOHVp5bgA1VLXS4IoP/s400/Giotto.mourning.750pix.jpg" alt="" id="BLOGGER_PHOTO_ID_5179219578244858370" border="0" /></a>First, comes the scent---the Angels are present.
Next comes the fall, and I feel a brushing of wings, growing stronger, more intense until my breath seems to fail me.<div>
Then, comes the darkness.
When they are gone, I struggle. The darkness is like a weight, pressing heavily upon me, and I must fight to push it off of me, so that I may surface, and rejoin the world. </div><div>
</div><div>The One Who Loves Me touches my face and washes me with water, or is it tears?
I yearn, but cannot know until I am back among the living.
I have suffered a little death.</div><div>
A little E.</div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com1tag:blogger.com,1999:blog-31984317.post-25608576036925898602020-12-19T16:28:00.000-08:002020-12-19T16:28:14.742-08:00Shine Your Light Into the Darkness and Your Joy Into the Light!<p></p><div class="separator" style="clear: both; text-align: center;"><br /></div><div><br /></div><div><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsTjnaesZzx4-7zyWq3kfWmuhpADeb6w-v7q09Uc-dxGE-shaVk7nyuVIZ8-BkT3uII3gofn89iv9kSNY11LPn7o-x2DoV_IhuJkFJhrHkMFYH2CrGjYMv4N_8Jr05Kelq4WQQ/" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="189" data-original-width="266" height="371" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsTjnaesZzx4-7zyWq3kfWmuhpADeb6w-v7q09Uc-dxGE-shaVk7nyuVIZ8-BkT3uII3gofn89iv9kSNY11LPn7o-x2DoV_IhuJkFJhrHkMFYH2CrGjYMv4N_8Jr05Kelq4WQQ/w523-h371/images.jpg" width="523" /></a></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: georgia; text-align: justify;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: georgia; text-align: justify;">So, it is nearly Christmas! There are always mixtures of dark and light memories but the trick for me is always to try to just think the dark recollections and speak the light ones. Grogu reminds me of this, so I thought I would share...</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: georgia; text-align: justify;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: georgia;"> Dark Memory: I can still recall fireplace lights twinkling against tile flooring, and waking to my father their friends and my mother huddled around me. I got the toy of a little girl's dream, a tin doll house with plastic furniture, and I was excited </span><span style="font-family: georgia;">about it. But...before they finished fitting the house together and crimping the tin tabs, I had a convulsion that freaked everyone out. Some celebration...</span></div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: georgia;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="text-align: justify;"><span> </span>Light Memory: I guess it was two years later, my father and mother brought special gifts for my sister and I. Twin miniature collies! We named them Terry and Jerry, and they were wonderful companions to us. They were willing to play and they slept on our beds at night. It was a magical Christmas that year.</span></div><div class="separator" style="clear: both; text-align: left;"><span style="text-align: justify;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="text-align: justify;">I guess it doesn't mean much across the span of a lifetime, but since we cannot erase or make friends with our E., all we can do is push back it's presence in our lives by recalling some of our best feelings. I know this sounds a little saccharine, and I have to admit I have been watching all sorts of Christmas movies since Thanksgiving, but working a small and selfish miracle for one's self is a good thing, especially since we will always recall the time of Covid-19. In future, that last statement will qualify as a "dark" memory, probably...</span></div><div class="separator" style="clear: both; text-align: left;"><span style="text-align: justify;"><br /></span></div><div class="separator" style="clear: both; text-align: left;"><span style="text-align: justify;">So Grogu and I would love to wish you all a Very Merry Christmas and a Happy New Year. There will be more blogging in the New Year, so I hope you will join me then. Thanks for your support and kind messages.</span></div><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p> </p></blockquote>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com0tag:blogger.com,1999:blog-31984317.post-76383390911353116682019-06-13T17:04:00.000-07:002019-06-13T17:33:56.808-07:00The Bell<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghR99eCxh3-BA3ADm1JecUd-wJF7z-TRdY-NMkKfOAV8wzc9oxaU_MZoJkkkIwZqMziBMl4OOLgQ3EVy6TRgXSiUPwFzYXpsp_0w8QBWYOdZ_b32pnCwLfwGtZ31fL2ttuqIFZ/s1600/safety+coffin.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="317" data-original-width="159" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghR99eCxh3-BA3ADm1JecUd-wJF7z-TRdY-NMkKfOAV8wzc9oxaU_MZoJkkkIwZqMziBMl4OOLgQ3EVy6TRgXSiUPwFzYXpsp_0w8QBWYOdZ_b32pnCwLfwGtZ31fL2ttuqIFZ/s640/safety+coffin.jpg" width="321" /></a> Therapists tell us that one of man's preeminent fears is being buried alive. The term for fear of being buried alive is <span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif;">Taphophobia or </span></span><span style="background-color: white; color: #222222;"><span style="font-family: "georgia" , "times new roman" , serif;">Taphephobia</span></span> may be the reason mining disasters capture and hold our attention, even when they happen far from our shores. A subset of that fear is the notion of being cremated alive. The sense that if one woke, surrounded by flame, enclosed not just in a box, but also in a cabinet, it would lessen one's opportunity for escape.<br />
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In the seventeenth, eighteenth and nineteenth centuries, this fear seemed to reach epic proportions, evidenced by a series of inventions: specialized, <i>safety</i> coffins with an attached bell and pulley system. These systems were designed so that if one awoke after being buried, they could ring the bell and be rescued. Families often hired grave diggers to wait up through the night just in case a bell rang. This practice encouraged the phrases, "saved by the bell", "dead ringer" and "graveyard shift". <br />
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When I was small, I frequently endured status epileptics of the convulsive type. At age 35, I went for a blood test and suffered a massive, violent tonic-clonic event and the folks in the Cigna lab thought I had died in the chair from it. All of them left the room and turned out the lights. Only thanks to my husband, who has experience with my epileptic states, was I not carted out by a coroner.<br />
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For me, the idea that one might be perceived dead when she was not seemed possible. I read Poe's short story "Berenice" and a few others by Poe. It seemed to confirm my worst fears, until I really began thinking about it. Still, as calm as I have learned to be, I have told my family NOT to cremate me and to definitely "wake" me for at least three days... And, DO NOT enbalm me.<br />
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Just keep me chilled and all will be well...<br />
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I think that's reasonable!<br />
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Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com5tag:blogger.com,1999:blog-31984317.post-10471403366170636032019-03-09T22:12:00.000-08:002019-03-09T22:14:33.661-08:00Waiting On "The Cure"<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "georgia" , "times new roman" , serif;"> So, I am nearly seventy now. Another couple of years and I will reach that mark in my lifetime and after all this time, I have yet to see a proven cure for Epilepsy. Sure, the drugs have improved. Sure, surgical techniques have improved. But...no "cure" has arrived. </span><br />
<span style="font-family: "georgia" , "times new roman" , serif;"> <b style="color: #454545; font-size: 12px;"> </b><span style="color: #454545;"> I suppose it is something like arriving in the future and there being no flying cars or teleportation devices. Rats! </span></span><br />
<span style="color: #454545;"><span style="font-family: "georgia" , "times new roman" , serif;"> A cure for E. is something vague, something to be hoped for, but probably not very likely to occur, at least in my </span></span><span style="color: #454545; font-family: "georgia" , "times new roman" , serif;">lifetime. </span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"> Then what do we do with our hopes? Well, just what we are already doing---walking, running and donating for the Cure. Waiting for it to come. We watch days and then years pass. We read everything we can, we give to organizations who say they are working for a cure. We stay good-natured and optimistic, thinking positivity will cosmically speed things along, but still there is nothing for us. But for many, a cure is <span style="caret-color: rgb(69, 69, 69);">their dream...</span></span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"> I have an older sister and she is blind. She has the acronymic RLF. Retrolental Fibroplasia (RLF) was caused in the 1950's by too much oxygen administered to premature infants. </span><span style="color: #454545; font-family: "georgia" , "times new roman" , serif;">She does not sit around waiting for a cure, though, many folks have asked her over the years if she would want to be cured of her blindness. She has always answered "no".</span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"> Her dream in life has been to be able to drive a car. She has gotten very excited over the prospect of the self-driving car recently and is hoping she will be able to own and use one one day. Personally, I hope her wish is fulfilled...</span><br />
<span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: "georgia" , "times new roman" , serif;"> It seems, to my way of thinking at least, impractical or</span><span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: "georgia" , "times new roman" , serif;"> implausible to find a cure for an overarching condition like this </span><span style="color: #454545; font-family: "georgia" , "times new roman" , serif;">because there are so many kinds and types of E<span style="caret-color: rgb(69, 69, 69);">. And if there was a cure, upon whom would this cure be bestowed? Would a new hierarchy of severity and deservedness be created to winnow the Some from the Many? </span></span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"><span style="caret-color: rgb(69, 69, 69);"> I guess I sound a little pessimistic and a bit paranoid here, but these are the kinds of things I imagine with talk of a pending "cure".</span></span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"> I get it---I mean all of us would like to wake one morning to the idea that we are solid and no longer prey to seizures, no matter the kind. I wish for that eventuality, too. I am so tired of having epilepsy. It makes me weary down to the nubs of my soul to have to even think about it. I am so tired of having to say to another person that I had a seizure or that I need to lie down, sit down, drink water, close my eyes, etc. because I feel a seizure coming on. And I am equally exhausted of being teased with the idea of a cure, lingering just around the corner.</span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"> If one should materialize, I will be glad. Until then, I am finished waiting for the cure to find me. I think it's a reasonable posture to take, don't you?</span><span style="color: #454545; font-family: georgia, "times new roman", serif;"> </span><br />
<span style="color: #454545; font-family: "georgia" , "times new roman" , serif;"> </span>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com1tag:blogger.com,1999:blog-31984317.post-81318688906575992082018-06-02T01:02:00.003-07:002018-06-02T01:02:52.522-07:00Have You Ever...?<div class="separator" style="clear: both; text-align: center;">
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It occurred to me the other day that when I haven't had a convulsion for a long-ish period of time, I begin to get nervous. I become hyper-aware, and every little thing seems to feel like a warning that a massive event is on the way. I would love to feel free of epilepsy, but I never really do.<br />
I suppose part of my anxiety is linked with the fact that I do have an aura before an event. This means (at least to me) that any little sound, smell or visual oddity is a signal to be careful where I go, what I do and with whom I do it.<br />
And each time the sequence of events repeats, it makes me feel as though the pattern is set. Epilepsy really cannot be avoided. Convulsions can't be evaded. Seizures of all sorts and kinds can't be talked away or reasoned with. There is no amount of willing or determining that can be done by any one of us that can keep it away or make it stop once it has you. And, for me, there is an almost claustrophobic feeling that I cannot outrun or escape it's onset. Of course, this is how it feels when I am only ruminating on it. We all know that when E. does happen to visit, no one really has the time or luxury to contemplate how it feels.<br />
So this is why I say I am epileptic because contrary to the positive thinking of many folks, I do not deny that my epilepsy has me, and that it has since I was 3 years old. I know it has informed and even formed some of my thinking and development as a human being. But, how do you think of it???<br />
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Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com1tag:blogger.com,1999:blog-31984317.post-52129196204785047682018-03-17T11:59:00.000-07:002018-03-17T11:59:20.569-07:00St. Patrick & Epilepsy...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmwK0-O-yUcPGIC_-T8rkHsvPuk3nmaho2hsTEKIsPnxAfodwWewymVargu9da_bOkshqn6wpbq-Ml65VOhqbn5iCwNuHjNG8mKQ2xSP_n5rXS-DOQIRcVlwCEudJMZS4Yue0v/s1600-h/St-Patrick.gif" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5314269649092498338" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmwK0-O-yUcPGIC_-T8rkHsvPuk3nmaho2hsTEKIsPnxAfodwWewymVargu9da_bOkshqn6wpbq-Ml65VOhqbn5iCwNuHjNG8mKQ2xSP_n5rXS-DOQIRcVlwCEudJMZS4Yue0v/s400/St-Patrick.gif" style="cursor: hand; cursor: pointer; float: right; height: 400px; margin: 0 0 10px 10px; width: 282px;" /></a><br />
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<span class="Apple-style-span" style="color: rgb(51 , 51 , 51); font-family: "arial"; font-size: 10px; line-height: 18px;"></span><br />
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<span class="Apple-style-span" style="color: rgb(51 , 51 , 51); font-family: "arial"; font-size: 10px; line-height: 18px;"><strong style="border-bottom-style: none; border-left-style: none; border-right-style: none; border-top-style: none; font-weight: 600; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: "georgia";"><span class="Apple-style-span" style="font-size: medium;">MEDICAL MATTERS:</span></span></strong><span class="Apple-style-span" style="font-family: "georgia";"><span class="Apple-style-span" style="font-size: medium;"> if you suffer from epileptic seizures, St Patrick’s your only man, writes </span></span><strong style="border-bottom-style: none; border-left-style: none; border-right-style: none; border-top-style: none; font-weight: 600; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-style: none; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px;"><span class="Apple-style-span" style="font-family: "georgia";"><span class="Apple-style-span" style="font-size: medium;">MUIRIS HOUSTON</span></span></strong></span></div>
<div style="line-height: 18px; margin-bottom: 18px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
<span class="Apple-style-span" style="color: rgb(51 , 51 , 51); font-family: "arial"; font-size: 10px; line-height: 18px;"><span class="Apple-style-span" style="font-family: "georgia";"><span class="Apple-style-span" style="font-size: medium;">THE INTERNATIONAL image of St Patrick’s Day is more about leprechauns, green beer and cabbage and corn beef than early Irish Christianity. And while the myths associated with St Patrick do not have a particularly medical flavour, in general saints have been linked with diseases and cures through the centuries.</span></span></span></div>
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<span class="Apple-style-span" style="color: rgb(51 , 51 , 51); font-family: "arial"; font-size: 10px; line-height: 18px;"><span class="Apple-style-span" style="font-family: "georgia";"><span class="Apple-style-span" style="font-size: medium;">St Patrick has been mentioned as someone to pray to if you have epilepsy.</span></span></span></div>
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<span class="Apple-style-span" style="color: rgb(51 , 51 , 51); font-family: "arial"; font-size: 10px; line-height: 18px;"><span class="Apple-style-span" style="font-family: "georgia";"><span class="Apple-style-span" style="font-size: medium;">Tradition has it that a person with epilepsy who slept on “leaba Pharaic” on Caher Island off the Mayo coast could be cured. </span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwePEhrV2mBwNylCuUB55NW0YfrXnaIOxjI-dTGjtthEZsXdRzHA4NSu5j2vaHj-8EWUW0Jp9GvWxqEoFOSo0ghID6YrD8psmcnEuaL6pm0od0_UkMwXdmsKAAcu0XP-qGj4mz/s1600-h/treat-st-patricks-day.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5314279484660322866" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwePEhrV2mBwNylCuUB55NW0YfrXnaIOxjI-dTGjtthEZsXdRzHA4NSu5j2vaHj-8EWUW0Jp9GvWxqEoFOSo0ghID6YrD8psmcnEuaL6pm0od0_UkMwXdmsKAAcu0XP-qGj4mz/s400/treat-st-patricks-day.jpg" style="cursor: hand; cursor: pointer; display: block; height: 300px; margin: 0px auto 10px; text-align: left; width: 400px;" /></a>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com2tag:blogger.com,1999:blog-31984317.post-35061767776687847902018-02-28T14:15:00.000-08:002018-02-28T14:29:15.058-08:00The Way Back...<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR3AX9kb_R5CmiLWZQz2UVIPtqhf35ZIITneisymw6yxy-MKtRaMy34lMad01zNL_V-gIkQNNuamfGdsvMIM0ZHL3sQnNv_o-CuVBdNjKX77r6dOEYZO_l8cfowVVs0ZUxtGM6/s1600/ColorizedPostcard.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="536" data-original-width="782" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiR3AX9kb_R5CmiLWZQz2UVIPtqhf35ZIITneisymw6yxy-MKtRaMy34lMad01zNL_V-gIkQNNuamfGdsvMIM0ZHL3sQnNv_o-CuVBdNjKX77r6dOEYZO_l8cfowVVs0ZUxtGM6/s400/ColorizedPostcard.jpg" width="400" /></a></div>
If there is a clue to epilepsy, then it has to be in our collective past. That is what this blog has entertained since I began writing it. Our collective past makes our present and even our futures possible. We have to do more than offer our experiences in daily living to others. We have to offer some kind of historical perspective, a social perspective, concerning epilepsy.<br />
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For me, this is a root component to learning to understand and to live with this condition.<br />
Take for example the photo above. At the turn of the past century, the medical knowledge at the time suggested that persons with epilepsy needed to be hospitalized for the protection of the family and the patient. Care was limited, in our contemporary sense of the word, to labor and fresh air.<br />
Separate accommodations for the "feeble minded and epileptics" often meant various treatments, including segregation, bromides and starvation. It was felt at the time that starving some epileptics resulted in a marked reduction in seizure activity, while bromides created a calming effect.<br />
Hospitalization, then, was complicated. Years later, sterilization for both men and women was considered necessary so that epilepsy could not be passed on in families.<br />
It was under these conditions that doctors became aware of the possibility of death from epilepsy. In close contact with epileptic patients, doctors observed that some of their charges died from the effects of seizing. Today, doctors brush aside the notion that one can <i>die </i>from epilepsy. Yet, it was common knowledge at the end of the 19th century and into the earlier part of the 20th century.<br />
Today, the notion that epilepsy is one of the most common neurological conditions prompts many doctors to deny the thought that one can die from epilepsy and not to pass the information along to their patients or their families. Sometimes, they simply don't know the range of complications related to epilepsy, sometimes it is a consequence of bad medical school training, sometimes it is a neglected issue because neurologists don't want to alarm families or patients. Whatever the case, the knowledge is frequently withheld.<br />
The experience of living after a family member or friend has died from this condition is terrible. Finding out that doctors knew that this is a possibility and have simply not passed it along is both frustrating and maddening. Activism against this reality has been somewhat effective. Today this possibility is termed SUDEP or sudden unexpected death from epilepsy.<br />
While this is not a posting to make us depressed or grim, it is important to be aware of the possibility and to know that there are folks working to restore this knowledge and import. Doctors must be pressured into telling the whole truth to patients and families. They are not in the position to withhold this kind of relevant information. That is a kind of medical paternalism. It should not and must not be tolerated.<br />
Medical activism should be practiced by those of us who share this condition. We must be proactive with our care. Arming ourselves is the best step we can take to inform and protect ourselves and the people we love.<br />
Part of my effort with my blog is to encourage each of us to stand up for ourselves. Self identification is one of those ways. Confrontation with our healthcare providers is another way.<br />
Learning about our history and then making an application of it can be a useful tool and yet another way of pushing back, for our own benefit and for those not yet diagnosed. <br />
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Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com0tag:blogger.com,1999:blog-31984317.post-8973317096740310492015-04-08T14:57:00.002-07:002015-04-08T15:21:35.048-07:00Telling Our Own Story...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbSuVJHCTWxMANsaJHmmngqnEVxs3wmgMWn6EBobL5NPOdODEQwq84-f_dLQoLkhqHY7VDWjPFZCJ3NNPddEYG9nHH3_eRnKriLDeE_ggM3UMubnUnWMkzpRQ7hW3TeJokFzGS/s1600/Celebrate-story-sharing-to-end-stigma.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbSuVJHCTWxMANsaJHmmngqnEVxs3wmgMWn6EBobL5NPOdODEQwq84-f_dLQoLkhqHY7VDWjPFZCJ3NNPddEYG9nHH3_eRnKriLDeE_ggM3UMubnUnWMkzpRQ7hW3TeJokFzGS/s1600/Celebrate-story-sharing-to-end-stigma.jpg" height="226" width="320" /></a></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: "American Typewriter";">It is both possible to suffer a
disease without illness and suffer illness without disease. Illness connotes a
moral condition and disease signifies a physical set of unfortunate bodily
responses without moral imputation (Schneider & Conrad 1983). </span><br />
<span style="font-family: "American Typewriter";"><br /></span>
<span style="font-family: "American Typewriter";">Further, the
notion of illness conveys irregularity, victimization, pity and revulsion
(Sontag 1978).<span style="mso-spacerun: yes;"> </span>In the lives of the
chronically ill, the struggle to sustain a balance between the physical and
moral aspects of one’s condition can effectively blur the construction of
identity, thus impairing socialization and independence by sapping the desire
for either. </span><span style="font-family: 'American Typewriter';">The construction of identity does not
take place in a vacuum. In many instances, the identity formation or the
construction of Self is a process noticeable to us, as our participation in
it progresses.</span><br />
<span style="font-family: 'American Typewriter';"><br /></span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: 'American Typewriter';">Take for example the simple act of
relating how one has become disabled. Here, the story is the individual.
Biographical data, integral to the formation of a personal identity, is the
stuff of self, and a fragile artifact.</span><span style="mso-spacerun: yes;">
</span><span style="font-family: 'American Typewriter';">The effort one makes reciting this story is tremendous and in itself, an
act of trust.</span><br />
<span style="font-family: 'American Typewriter';"><br /></span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: 'American Typewriter';">A common occurrence in this
recitation, however, is the coopting of the tale by a friend or relative. In
this instance, the individual is cut out of the loop of his or her own agency,
because the telling of the tale is an assertion of his or her own self
identity. When it is coopted by another, it is as if that identity is silenced.</span><br />
<span style="font-family: 'American Typewriter';"><br /></span>
<span style="font-family: 'American Typewriter';">When, at the same time, errors are
made in the telling of the tale, an indescribable blow is made against the
owner of the story. A kind of assault is made against the individual to whom
the tale belongs. And, when this is done in the presence of a professional, it
can undercut the validity of further input, making it seem unreliable.</span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: "American Typewriter";"><br /></span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: 'American Typewriter';">Most of the time, the friend or
relative does this action in an effort to “save time” because they have heard
the story before and feel it may “drag on” more than is comfortable. For the
individual to whom the tale belongs, it might be better if the friend or
relative simply waited in the other room until the appointment is over.</span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: "American Typewriter";">For persons experiencing epilepsy,
however, it can be difficult to ask the person to wait. The individual with
epilepsy may feel the need to have a witness along to confirm certain aspects
of seizure activity, such as the length of the seizure or convulsion. <o:p></o:p></span><br />
<span style="font-family: "American Typewriter";"><br /></span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
<span style="font-family: 'American Typewriter';">We know that we cannot witness our
own activity, but only report that something has or has not occurred. We are in
a delicate spot at these times. We try to establish a sound self-image that can
be respected by others. We also try to develop a sound relationship with the
professional we are dealing with, and many times this is a physician. We know a
doctor’s time can be limited, but we also know that there are salient elements
in the story that will help the doctor to understand us best. </span><br />
<span style="font-family: "American Typewriter";"><i style="mso-bidi-font-style: normal;"><br /></i></span>
<span style="font-family: "American Typewriter";"><i style="mso-bidi-font-style: normal;">How</i> we tell the tale is as revealing as
the tale itself.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%; text-indent: .5in;">
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Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com0tag:blogger.com,1999:blog-31984317.post-1155161859399051222015-01-05T11:30:00.000-08:002015-01-07T11:38:51.573-08:00We Are Greater Than The Sum of Our Diagnoses<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxfVh2jHWlII-izU4O2RMMJ4__fHI8iLFnEwlxfiNY7xOZqQum4tvPfRcMqm_k8PMi9FXMDXzFJSPf1416u2_WB2VjmhXG3Gjr1OucdYb3Jt0nGRhHj-2FIJduxXE99kdD9QMw/s1600-h/phpThumb.php+copy.png"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxfVh2jHWlII-izU4O2RMMJ4__fHI8iLFnEwlxfiNY7xOZqQum4tvPfRcMqm_k8PMi9FXMDXzFJSPf1416u2_WB2VjmhXG3Gjr1OucdYb3Jt0nGRhHj-2FIJduxXE99kdD9QMw/s320/phpThumb.php+copy.png" id="BLOGGER_PHOTO_ID_5034431942822383586" style="cursor: hand; cursor: pointer; float: right; margin: 0 0 10px 10px;" /></a><br />
E. is a heavy label to live with. The culture surrounding it is one of silence and misdirection. It suggests that there is something about us of which we should feel ashamed. The effect of this can be a kind of paralysis: paralysis of speech, of thought, of action.<br />
<br />
When I read about other disabled persons, I see a wide variety of writing, social action and speech. Books about the experiences of being disabled are more than just narratives of whether or not to have brain surgery, what drugs to take for my condition or how my doctor’s visit went last month. These others are not content to remain silent and medicalized. They want to live independent lives, think complicated thoughts, write and act in ways that allow them to be greater than the sum of their diagnosis.<br />
<br />
When I first learned my diagnosis, I was still a child. I learned the words, the names of the tests, the names of all the drugs I had to take every day. I can recall doing projects in school about E. that included sections of my EEG printouts and answering questions from kids and teachers alike. This was a regular feature of my elementary school life and it continued into high school until an English teacher of mine suggested that since I knew so much about the subject, I should write about it. Confronted with this suggestion, I never said another word in class about E..<br />
<br />
I recall working very hard to go to college and got an offer from one in Los Angeles. My mother turned it down flatly. She couldn’t imagine educating me beyond high school: “Spending good money on that sort of thing would be just throwing it away, wouldn’t it?” The worst part of it all was that I accepted this evaluation of myself. <br />
<br />
Years later, I made my first attempt at college. I failed. I walked away from it and somehow this seemed to confirm my mother’s original comments. In my mid-40’s I tried again, at the same school. This time I was wildly successful. The experience changed me. I began to analyze the social and cultural structures that come along with a diagnosis of epilepsy. I am finding my voice and writing what we all know: doctors and drug-makers influence information about this condition more than the individuals who experience it. <br />
<br />
I think changes are needed in the ways we experience E. We certainly have need of both the doctors and the drug-makers. But we have a greater need of each other. We need to talk to one another about our social experiences and how we worked through the difficulties we encounter. We need to demand a wider variety of articles and books on the subject---something more stimulating and interesting than the standard fare explaining what epilepsy is or the predictable I-triumphed-over-epilepsy tales.<br />
<br />
We also need to have a little mercy on ourselves and recognize that we are just learning to speak to each other about our condition. Unlike the deaf, the blind or others who have enjoyed the luxury of being open about their conditions for decades, people with epilepsy have been shut off from each other, their own families and from the larger society until very recently. Speaking up about E. is a good thing to practice now, as we learn to talk about it openly with each other.Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com2tag:blogger.com,1999:blog-31984317.post-63082575225350381362013-04-10T14:15:00.000-07:002013-04-12T15:38:53.563-07:00"Fail First"...What a Really Bad Idea!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyPwd4mNW60UhNCGHO8nJgTD6AVOY8iZgZICdoZ4R-dljexMK8fj86cBX1TOxMctlT_qG3pNro48UNrC6NMmaifFrNORCg5fvKz1Bn7qj_KZcUdYWcK_UkbDNof3DB5VbaAAQv/s1600/1297783694_1354172012.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyPwd4mNW60UhNCGHO8nJgTD6AVOY8iZgZICdoZ4R-dljexMK8fj86cBX1TOxMctlT_qG3pNro48UNrC6NMmaifFrNORCg5fvKz1Bn7qj_KZcUdYWcK_UkbDNof3DB5VbaAAQv/s320/1297783694_1354172012.jpg" /></a><br />
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<span class="Apple-style-span" style="font-size: large;"> 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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;"> 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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;"> 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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;"> 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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;"> 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.</span><br />
<span class="Apple-style-span" style="font-size: large;"><br /></span>
<span class="Apple-style-span" style="font-size: large;"> 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!</span>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com4tag:blogger.com,1999:blog-31984317.post-53320071343509374892013-02-13T15:15:00.000-08:002013-03-11T22:09:34.075-07:00Invisible Pain and Suffering <div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4UMWaZv3hQLnQ1qxz7hxvDh87ut-Pv_UEJz0BKgq5ncMrZFuSVvWelVRHhV2cTczQ3jcf517AGkK9nZknmeyppcceKf0fZs738LvHlF5T9167tVE4CTEmE4FU1DsAKPQbSWVJ/s1600/Pain1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="500" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4UMWaZv3hQLnQ1qxz7hxvDh87ut-Pv_UEJz0BKgq5ncMrZFuSVvWelVRHhV2cTczQ3jcf517AGkK9nZknmeyppcceKf0fZs738LvHlF5T9167tVE4CTEmE4FU1DsAKPQbSWVJ/s640/Pain1.jpg" width="640" /></a></div>
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When I went searching for images of pain and suffering online, I was surprised to see that many of those images had to do with tears, oppression and isolation. Others, more disability-oriented, had to do with wheelchairs, crutches and braces. My own takeaway was that everyone can feel the effects of depression, isolation and oppression and attribute both pain and suffering to these conditions, but only some know the like of physical loss that renders them confined to chairs, braces or crutches.
The image above is an illustration from "Guinevere's Jealousy" by Tennyson. It offers to us the idea of secret suffering as a kind of etiquette of pain's expression. What the lady is in pain from, we cannot know and I do not know the image maker. I will include credit if one of you readers can supply me with the information I need...
But, the notion of "suffering silently" for the sake of those around you, is not new. And it has been a burden particularly for those of us with "invisible complaints" that has been difficult for us to shake and even more difficult for others to accept. Once an individual begins to speak aloud about epilepsy or any other ailment, there is a powerful inner voice suggesting it was not a good idea to bring it up at all. </span><br />
<span class="Apple-style-span" style="font-size: large;"> 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. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGFEVn-JEjydm2lKRICBrGGNeDQPdi8LZtXDU0bas5R0xbNJtsebKs4XVdJnGSFNS7vEoDexj4Mrbj8LpzgJb8-bBdO9e7luUN01lMe7FPoo0ZHX-qb2CRgscU77PqxP0n2MvO/s1600/Pain2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGFEVn-JEjydm2lKRICBrGGNeDQPdi8LZtXDU0bas5R0xbNJtsebKs4XVdJnGSFNS7vEoDexj4Mrbj8LpzgJb8-bBdO9e7luUN01lMe7FPoo0ZHX-qb2CRgscU77PqxP0n2MvO/s640/Pain2.jpg" width="640" /></a><span class="Apple-style-span" style="font-size: large;"> 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 <i>suffer silently, then when it becomes too much, yearn to die. </i></span><br />
<span class="Apple-style-span" style="font-size: large;"> David Brooks, in his New York<i> Times </i>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. </span><br />
<span class="Apple-style-span" style="font-size: large;"> 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. </span><br />
<span class="Apple-style-span" style="font-size: large;"> DO IT ANYWAY!!! SPEAK OUT, STAND UP FOR YOURSELVES...</span><br />
Rhead, George Wooliscroft & Louis. "Guinevere's Jealousy" from Tennyson, Alfred. Idylls of the King: Vivien, Elaine, Enid, Guinevere. New York: R. H. Russell, 1898.Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com0tag:blogger.com,1999:blog-31984317.post-40731026578155800932012-12-19T17:49:00.001-08:002012-12-19T17:54:38.627-08:00A Little Death.<div class="separator" style="clear: both; text-align: center;">
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About two months ago, I was out for dinner with my husband. It was a lovely, California evening, so we sat outdoors. The restaurant was crowded with folks who shared the same idea. </div>
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I just finished eating, pushed my plate aside and looked across the table at my husband.<br />
<br />
I recall telling him I was not feeling well. I emphasized the statement, saying I was <u>really</u> not feeling well. I had the feeling of hot fingers walking up my back and I thought I was going to be sick.<br />
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I began looking at the floor for a place to lie down, but there was no place. </div>
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And then I was gone.<br />
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I felt I had been gone quite awhile and as I came back, paramedics were at my side. For the first time in my life, I was going to the hospital!!! For the first time in 40 years, I had seized in a public place.<br />
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As it turns out, it was not just <u>a</u> seizure, but two in a row.<br />
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Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com2tag:blogger.com,1999:blog-31984317.post-60779636872837995042011-05-02T00:00:00.000-07:002020-07-29T23:10:49.694-07:00The Cage<a href="https://mail.google.com/mail/s/?view=att&th=12faeff5001e4482&attid=0.1&disp=attd&zw" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"></a><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBFPs1mL9L_2O-2wGELNhGrqlXxponA7QOQZVwLC4xItsW0bqTZCMzeMlvdUQzrqp7lAIDLGTQ1FX8oZebBWq_AxEfcmVcZVEvZtH9WkfH5XufmYNNmA9LEYwk0GwKTYCPLXpG/s1536/Cage+bed%252C+Museum+Dr+Guislain%252C+Gand+-+1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1152" data-original-width="1536" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBFPs1mL9L_2O-2wGELNhGrqlXxponA7QOQZVwLC4xItsW0bqTZCMzeMlvdUQzrqp7lAIDLGTQ1FX8oZebBWq_AxEfcmVcZVEvZtH9WkfH5XufmYNNmA9LEYwk0GwKTYCPLXpG/w400-h300/Cage+bed%252C+Museum+Dr+Guislain%252C+Gand+-+1.jpg" width="400" /></a></div>Bothered by nighttime thrashing? Nocturnal activity troubling your spouse? Try the cage!
Updated from older, more institutional models,
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hardware. It comes with a lifetime guarantee... As long as you live, the Cage will protect you from injury during those nighttime spells.
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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...Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com4tag:blogger.com,1999:blog-31984317.post-56171202795375642702011-04-01T18:21:00.000-07:002011-04-30T23:09:36.709-07:00Testimony to the IOM<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk2JsilDMGSEFSXbjCiinupcaEVp8HwNBh5G7ON72WZVQQg9Gmc78kYRtc08R1P-UM__8rhacPunXvKA1a93Tx7zxMhhmtiFQd7vAQhNXEGC-AKMGj8mqEHW2VNJV6MaU48FO9/s1600/Doctor-trust-tshirt-75.gif" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 400px; height: 249px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk2JsilDMGSEFSXbjCiinupcaEVp8HwNBh5G7ON72WZVQQg9Gmc78kYRtc08R1P-UM__8rhacPunXvKA1a93Tx7zxMhhmtiFQd7vAQhNXEGC-AKMGj8mqEHW2VNJV6MaU48FO9/s400/Doctor-trust-tshirt-75.gif" border="0" alt="" id="BLOGGER_PHOTO_ID_5590791397817545298" /></a>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. <div><span class="Apple-tab-span" style="white-space:pre"> </span>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.</div><div><span class="Apple-tab-span" style="white-space:pre"> </span>Here's what I wrote to them:<br /><br /><span class="Apple-style-span" style="font-family:'American Typewriter';font-size:100%;"><span class="Apple-style-span" style="font-size:12px;"><span class="Apple-style-span" style=" ;font-family:georgia;font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"><span class="Apple-style-span" style="font-family:'American Typewriter';font-size:100%;"><span class="Apple-style-span" style="font-size:12px;"> </span></span></span>There is a terrible gap in the quality of care owing to a lack of</span> </span></span><span class="Apple-style-span" style=" ;font-family:georgia;font-size:medium;">comprehension about epilepsy. The phrase “a commonly occurring</span> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">neurological disorder” frequently leads laypersons and professionals to </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">assume that epilepsy is not serious or dangerous to the patient. A more </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">refined amendment to approaches in medical school education would </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">benefit patients of all ages, and might make general practitioners and </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">neurologists more comfortable treating their patients with epilepsy. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"> Within the past ten years, I have been told by neurologists that “It </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">could be worse, at least epilepsy can’t kill you” and “Well, we’ll see if you </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">really have epilepsy: I will take you off all of your medications, and then if </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">you seize, we will know for certain”. During the same time, GP’s have </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">suggested that a tonic-clonic seizure has not occurred unless it is </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">accompanied by urination” and “It is very easy to fake epilepsy. Some of </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">you people do it for the attention.” </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span>Clearly, these are physicians who are behind on their reading and </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">who might benefit from a specific educational approach. Initially, I would </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">suggest a survey into the Attitudes of Physicians toward their Patients </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">with Epilepsy. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span>Because physicians can, by their personal attitudes, enhance or </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">diminish stigma to epilepsy in the community and within the family, they </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">are also central to quality of life issues. Additionally, physicians with poor </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">knowledge of epilepsy often have the tendency to view this disorder </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">according to the germ theory model. They become easily frustrated when </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">they cannot fulfill their own expectations to find a cure for epilepsy; this </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">can breed hostility between patient and doctor. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span>It is also important that health insurers be more broadly introduced </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">to the neurological sub-specialty, epileptology. The diagnostic codes and </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">data used to make referral decisions for patients could be smoothed if this </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">category were supplied to them as a legitimate category in neurology. </span></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"> So it seems that I am speaking about the need for a more intensified </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">educational approach, not only for the public at large, but also for the </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">professional population as a whole. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span>Treating epilepsy can be as frustrating for doctors as it is for </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">patients. Still, passing along bad information or resorting to cruelty is not </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">an answer. A cardiologist would not suggest taking a new heart patient off </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">his medications to see if he would have a heart attack to confirm a </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">diagnosis. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span>Perhaps one of the more ridiculous “cures” ever provided happened </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">when I was a child. In about 1960, my mother went to see a neurologist. </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">She talked about me with the doctor, describing my condition in detail. She </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">mentioned to him that I had long red hair and that she brushed my hair </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">every morning. She told him that I frequently seized during this process </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">and more than once, it had triggered status epilepticus. He thought about </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">what she told him for a moment then concluded that it was my hair that </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">was the problem. My hair, he told her, was too heavy for my head and </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">should be cut short to relieve my seizures. She cut my hair off that very afternoon.</span></span></p><p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span> So it seems that I am speaking about the need for a more intensified </span></span><span class="Apple-style-span" style=" ;font-family:georgia;font-size:medium;">educational approach, not only for the public at large, but also for the </span><span class="Apple-style-span" style=" ;font-family:georgia;font-size:medium;">professional population as a whole.</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style=" ;font-family:georgia;font-size:medium;"><span class="Apple-tab-span" style="white-space:pre"> </span>We have all learned a lot in the past 55 years of studying and living</span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">with this disorder. I can hardly wait to see how much more we can change </span></span></p> <p style="margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px American Typewriter"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:medium;">things, together. </span></span></p><div><br /></div><p></p></div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com5tag:blogger.com,1999:blog-31984317.post-27736582225597698672011-04-01T16:52:00.000-07:002011-04-01T17:04:46.169-07:00Seizing the Moment...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaovsSiH8k3mUz2Wjf6U7K2EAONlEm4pkxsWn8jDrCBYlFuw-sQDd2y1kFvXRxq8y2Jco0iMYlEmsjvdgLYI3b3LnVX-flV0s5cpt6VOrzGVB6Aq_6t6U5Wattk0uMc7IlVnIm/s1600/180480_10150092843924928_281678759927_5981401_702489_s.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 130px; height: 130px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaovsSiH8k3mUz2Wjf6U7K2EAONlEm4pkxsWn8jDrCBYlFuw-sQDd2y1kFvXRxq8y2Jco0iMYlEmsjvdgLYI3b3LnVX-flV0s5cpt6VOrzGVB6Aq_6t6U5Wattk0uMc7IlVnIm/s400/180480_10150092843924928_281678759927_5981401_702489_s.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5590767443993275794" /></a>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.<div><span class="Apple-tab-span" style="white-space:pre"> </span>Today, I just couldn't resist a return. I miss the blog...</div><div><span class="Apple-tab-span" style="white-space:pre"> </span>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. </div><div><span class="Apple-tab-span" style="white-space:pre"> </span>My regards and thanks to everyone who reads and follows. </div><div><span class="Apple-tab-span" style="white-space:pre"> </span>Cordially,</div><div><span class="Apple-tab-span" style="white-space:pre"> </span>Paula Apodaca</div><div><span class="Apple-tab-span" style="white-space:pre"> </span></div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com3tag:blogger.com,1999:blog-31984317.post-28254167699258529052010-05-01T16:25:00.000-07:002010-05-04T17:28:25.462-07:00Rethinking the Notion of the "Controlled" Epileptic (BADD 2010 entry...)<a href="http://photos1.blogger.com/blogger2/2749/3904/1600/4FF2.0.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;" src="http://photos1.blogger.com/blogger2/2749/3904/320/4FF2.jpg" border="0" alt="" /></a><br /><br />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.<br /><br />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.<br /><br /> 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.<br /><br />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.<br /><br /> 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?".<br /><br /> 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.<br /><br /> 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.<br /><br /> The conflict between what is believed to be true and what presents itself as real, looms like a challenge to authority for some people.<br /><br /> But what authority are we speaking of and where did it come from?<br /><br /> 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.<br /><br /> 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.<br /><br /> 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.<br /><br /> But, what if they don’t seem to be obeying? What if they seem to be intentionally seizing all over the place?<br /><br /> 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..<br /><br /> 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.<br /><br /> 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.<br /><br /> 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)].<br /><br />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.<br /><br />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.Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com5tag:blogger.com,1999:blog-31984317.post-1154479030272520112010-04-08T16:21:00.000-07:002010-04-08T16:22:14.102-07:00Tell 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.<br /><br /> 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.<br /><br /> 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.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtUDeUlO67gTAzRtmTkDFoWumUiiTkF4vWwUA2MoKWu9i2DstI1EEpzzc-NTRB488yBhyphenhyphen5Qu0KuPQ0Fua1n0bN8Y1Q_V6x29Q6aP8VRYCD0ot0JvwLuakDkVkz1AJKwF-OBLk_/s1600-h/f7Z1684Dp.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtUDeUlO67gTAzRtmTkDFoWumUiiTkF4vWwUA2MoKWu9i2DstI1EEpzzc-NTRB488yBhyphenhyphen5Qu0KuPQ0Fua1n0bN8Y1Q_V6x29Q6aP8VRYCD0ot0JvwLuakDkVkz1AJKwF-OBLk_/s320/f7Z1684Dp.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5034439441835282434" /></a><br /> 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.<br /><br /> 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.<br /><br /> 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.<br /><br /> Regardless how the energy spends itself, the end result is the distortion of my life's continuity.<br /><br />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.<br /><br /> 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.<br /><br /> 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."<br /><br /> 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.<br /><br /> 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.<br /><br /> 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.<br /><br /> 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.<br /><br /> 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.<br /><br /> The truth is, I cannot do it.<br /><br /> 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.<br /><br /> 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.<br /><br /> 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.Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com3tag:blogger.com,1999:blog-31984317.post-18342221288381535492009-07-13T11:42:00.000-07:002009-09-01T10:38:19.824-07:00Munchausen by Internet<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhatNUdSn4ik-k7ObxOWrLjSVGMuIAz1NVF7WpmO2m89zZ-1jNz399VoD4zEwD2OsP0E3bcmgfqrzCzmjEXoDeYmJkjo0cNG2aRL7wiJgUt2DeJSwvNg0X85ZwSnl9q20LzefT8/s1600-h/59956.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 400px; height: 290px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhatNUdSn4ik-k7ObxOWrLjSVGMuIAz1NVF7WpmO2m89zZ-1jNz399VoD4zEwD2OsP0E3bcmgfqrzCzmjEXoDeYmJkjo0cNG2aRL7wiJgUt2DeJSwvNg0X85ZwSnl9q20LzefT8/s400/59956.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5372323110443354562" /></a><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"> 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.<br /></span></span><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh92wjxumBG6A8OyEKiExDvNUtWquIfD-gJj_yiEvwcRUuUatFz_GlI_6tYFGCccrpaKlFF7aBbc42esB2oJ35qRpIcoGWFWEDbaPD58SMyJJBHYUUGuyM2AxNXNHtjGR-NMzn2/s1600-h/baron+munchausen.jpg"></a></span></span><span class="Apple-style-span" style=" -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; "><div style="text-align: right;"><span class="Apple-tab-span" style="white-space:pre"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"> </span></span></span></div><div style="text-align: right;"><span class="Apple-tab-span" style="white-space:pre"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"> </span></span><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"> </span></span></span><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">Marc D. Feldman is a prominent American psychiatrist who has written extensively on the problem </span></span><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">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.</span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></div><div style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">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.</span></span></div></span><div style="text-align: right;"><span class="Apple-style-span" style=" -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px; "><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"><br /></span></span></span></div><div><span class="Apple-style-span" style="font-family:Times, -webkit-fantasy;"><span class="Apple-style-span" style=" -webkit-border-horizontal-spacing: 2px; -webkit-border-vertical-spacing: 2px;font-size:medium;"><span class="Apple-style-span" style=" ;font-family:Times;"><p style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">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:</span></span></p><ol><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">the posts consistently duplicate material in other posts, in books, or on health-related websites;</span></span></li><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">the characteristics of the supposed illness emerge as caricatures;</span></span></li><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">near-fatal bouts of illness alternate with miraculous recoveries;</span></span></li><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">claims are fantastic, contradicted by subsequent posts, or flatly disproved;</span></span></li><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;</span></span></li><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;</span></span></li><li style="text-align: right;"><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.</span></span></li></ol><div style="text-align: right;"><strong><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">References:</span></span></strong><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;"> </span></span></div><div><span class="Apple-style-span" style="font-size: medium;"><span class="Apple-style-span" style="font-family:georgia;">Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672<br />Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausen<br />by proxy. Western Journal of Medicine, 168, 537-539<br />Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley & Sons</span></span></div></span></span></span></div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com2tag:blogger.com,1999:blog-31984317.post-21818229569152388812009-06-24T15:16:00.000-07:002009-06-24T15:21:33.723-07:00Invisible Illness Bingo by Anna Ham<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFZM83yCgu5iduGzoiMWp2Th49OQy2qHZ6ACsTJF8qeVWHLTFQVSg7K_4Oc6MZnY_8iBMVETMPlHugueklFPpLViYm0WPmnZbVzlsYhTti9bM_Dh13aLD2CKc85olRWfO8wwrK/s1600-h/annaham-invisill01.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFZM83yCgu5iduGzoiMWp2Th49OQy2qHZ6ACsTJF8qeVWHLTFQVSg7K_4Oc6MZnY_8iBMVETMPlHugueklFPpLViYm0WPmnZbVzlsYhTti9bM_Dh13aLD2CKc85olRWfO8wwrK/s400/annaham-invisill01.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5351022329545799842" /></a><div style="text-align: center;">DOUBLE CLICK ON THE BINGO CARD TO ENLARGE IT FOR READING...</div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWQ4aTxj7ZHWe-eo5YSWSoDv57U78VgTby0MYDLPT7XUozJKkIT0sNUJzcKJmE9uHzKxftChrlRgG7G9i9P7QJN-HxbbmLEKfAbDi93krMLGTjWSfldjHgQAx92NdkeKHJkZfd/s1600-h/annaham-invisill01.jpg"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3Cg6sbJDaRT1sA6GS1MW602WCkoXLXNDaAjYIAY8cOSy1tmNjwDJHg6Ed6neMWdNFrRo_5y0GbFJchRnTx437jasfuhhMca6nF8vF1Gz6f8iWty5uze6Awet6s-T_QH6vRM0F/s1600-h/annaham-invisill01.gif"></a>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com3tag:blogger.com,1999:blog-31984317.post-74007956446630421862009-05-08T14:54:00.000-07:002009-05-08T15:53:20.169-07:00How Heavy is Hair?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigeyn_WP2IZ61fKeTY0rMWklF9WKnsAooErpeRlCDM5IoziSlWWbIVQGuINfPYM7neFgiSUI_M_RggMmbdpN6EZJYr_0baTg69b7SUiZtyxr0T4n7A5ItGvSdY6XSZR2aGPwQB/s1600-h/001.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigeyn_WP2IZ61fKeTY0rMWklF9WKnsAooErpeRlCDM5IoziSlWWbIVQGuINfPYM7neFgiSUI_M_RggMmbdpN6EZJYr_0baTg69b7SUiZtyxr0T4n7A5ItGvSdY6XSZR2aGPwQB/s400/001.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5333577146725138418" /></a><br /><span class="Apple-tab-span" style="white-space:pre"> </span>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?<div><span class="Apple-tab-span" style="white-space:pre"> </span>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.</div><div><span class="Apple-tab-span" style="white-space:pre"> </span>"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."<br /></div><div><span class="Apple-tab-span" style="white-space:pre"> </span>Mama thanked the man and returned home. She had been very impressed with the way he assessed the situation without even seeing me.<br /></div><div><span class="Apple-tab-span" style="white-space:pre"> </span>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.<br /></div><div><span class="Apple-tab-span" style="white-space:pre"> </span>"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". </div><div><br /></div><div>I was 25 years old before I let my hair grow out again.<br /></div><div><span class="Apple-tab-span" style="white-space:pre"> </span>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.<br /></div><div><span class="Apple-tab-span" style="white-space:pre"> </span>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?</div><div><br /></div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com3tag:blogger.com,1999:blog-31984317.post-28477845864230331562009-05-07T16:01:00.000-07:002009-05-07T16:05:57.377-07:00You Know You Have E. When…<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmEyBfqfWgPc8y3qqz-bXmyv8nHsar6BklwOsabaNCAYvyRtScrpX7LYu38_gaO_FMGjXugN-caOkOrdl_iTY4TL7bnGm7bJCTJgB7412ATKTPPW24bExIc5IEkpl9EArPIT_/s1600-h/6a00e54f05e1bb883401157010ffc7970b-250wi-1.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 250px; height: 352px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmEyBfqfWgPc8y3qqz-bXmyv8nHsar6BklwOsabaNCAYvyRtScrpX7LYu38_gaO_FMGjXugN-caOkOrdl_iTY4TL7bnGm7bJCTJgB7412ATKTPPW24bExIc5IEkpl9EArPIT_/s400/6a00e54f05e1bb883401157010ffc7970b-250wi-1.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5333221403540674130" /></a><p class="MsoNormal" style="line-height:150%"><span class="Apple-style-span" style="font-size:medium;">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.</span><span><span class="Apple-style-span" style="font-size:medium;"> </span></span><span class="Apple-style-span" style="font-size:medium;">Even reading about suffering can take its toll.</span><span><span class="Apple-style-span" style="font-size:medium;"> </span></span><span class="Apple-style-span" style="font-size:medium;">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.</span></p> <p class="MsoNormal" style="line-height:150%"><span><span><span class="Apple-style-span" style="font-size:medium;"> </span></span><span class="Apple-style-span" style="font-size:medium;">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. </span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><span><span class="Apple-style-span" style="font-size:medium;"> </span></span><span class="Apple-style-span" style="font-size:medium;">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.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when there are two cars in the driveway and you don’t drive.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have E. when...someone asks you if you're alright & you didn't know anything was wrong.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when you find yourself eating lunch for the second time in a row.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when your dentist worries about losing his fingers...</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">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...</span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when holy water burns you.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when your roommate doesn't know whether to call 911 or a Priest.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when your Meds cost more than you make in a month.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when you take meds to help the meds you take.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when upon having a burst of energy you're asked "are you having a episode?"</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">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 ?</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when...Sleeping till 3:00 pm is normal...yet not sleeping at all is too.</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">You know you have epilepsy when you hear ten times a day from your loved ones…did you remember your "pills"</span><span class="Apple-style-span" style="font-size:medium;"><o:p></o:p></span></span></p> <p class="MsoNormal" style="line-height:150%"><span><o:p><span class="Apple-style-span" style="font-size:medium;"> </span></o:p></span></p> <p class="MsoNormal" style="line-height:150%"><span><span class="Apple-style-span" style="font-size:medium;">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...</span><o:p></o:p></span></p> <!--EndFragment-->Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com1tag:blogger.com,1999:blog-31984317.post-29539480164150100422009-05-01T13:55:00.000-07:002009-05-05T11:15:05.053-07:00My Blighted Life... BADD Contribution 2009<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhGGTzBGqIeUG0lGuE3x8lPCuSouUFyaqo3-RbOF85y_NabSbA9yD0g77fcnTAvTrEqyfeahZMDS0Y0NlGTHljcut-ZEQ-F2w5hDOaeuIpoLSemMl4giKBjZz9BGtFhm0ZmXeT/s1600-h/Eugenics_congress_logo.png"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 400px; height: 307px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhGGTzBGqIeUG0lGuE3x8lPCuSouUFyaqo3-RbOF85y_NabSbA9yD0g77fcnTAvTrEqyfeahZMDS0Y0NlGTHljcut-ZEQ-F2w5hDOaeuIpoLSemMl4giKBjZz9BGtFhm0ZmXeT/s400/Eugenics_congress_logo.png" border="0" alt="" id="BLOGGER_PHOTO_ID_5330964504659496994" /></a><span class="Apple-tab-span" style="white-space:pre"> </span>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".<br /><div><br /></div><div><span class="Apple-tab-span" style="white-space:pre"> </span>A common comment I hear from within our community comes in the form of a question: Can you inherit epilepsy?<br /></div><div><br /></div><div><br /></div><div><span class="Apple-tab-span" style="white-space:pre"> Until recently, I had not fitted the pieces of </span></div><div><span class="Apple-tab-span" style="white-space:pre">the puzzle for this question together. When one</span><br /></div><div><span class="Apple-style-span" style="white-space: pre;">asks if the source of E. is hereditary, what one </span></div><div><span class="Apple-style-span" style="white-space: pre;">seems to really be asking is whether or not it can</span></div><div><span class="Apple-style-span" style="white-space: pre;">be "caught" by one's progeny from a parent.</span></div><div><span class="Apple-style-span" style="white-space: pre;"><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><span class="Apple-tab-span" style="white-space:pre"> </span>If one considers the question more deeply,<br /></span></div><div><span class="Apple-style-span" style="white-space: pre;">one can begin to see a connection between the medical model</span></div><div><span class="Apple-style-span" style="white-space: pre;">and fundamental eugenics philosophy: in each case, it is the disabled individual who is the problem and it is her </span></div><div><span class="Apple-style-span" style="white-space: pre;">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.</span></div><div><span class="Apple-style-span" style="white-space: pre;"><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><span class="Apple-tab-span" style="white-space:pre"> </span>Rather than seeing society as placing obstacles in the path of the disabled' participation and inclusion, </span></div><div><span class="Apple-style-span" style="white-space: pre;">those who still hang on to these outmoded explanations continue to segregate all of society into an </span></div><div><span class="Apple-style-span" style="white-space: pre;"><i>us versus them</i> reality.</span></div><div><span class="Apple-style-span" style="white-space: pre;"><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><span class="Apple-tab-span" style="white-space:pre"> </span>Many of us are at least vaguely aware of Professor Singer, the Australian professor who has come close to equating </span></div><div><span class="Apple-style-span" style="white-space: pre; ">disabled children with the concept of the "useless eater". <span class="Apple-style-span" style="white-space: normal; line-height: 19px; "><span class="Apple-style-span" style="font-size:medium;">Singer's support for euthanizing disabled babies could lead to disabled older children and adults being valued less as well. <span class="Apple-style-span" style=" ;font-family:georgia;">When Peter Singer attempted to speak during a lecture at Saarbrucken he was interrupted by a group of protesters including advocates for the handicapped. </span></span></span></span></div><div><span class="Apple-style-span" style="line-height: 19px;"><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><span class="Apple-style-span" style="white-space: normal; line-height: 19px; "><span class="Apple-style-span" style="font-size:medium;"><span class="Apple-style-span" style=" ;font-family:georgia;"><span class="Apple-tab-span" style="white-space:pre"> </span>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. </span></span></span></span></div><div><span class="Apple-style-span" style="white-space: pre; "><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><span class="Apple-tab-span" style="white-space:pre"> </span>So is this the same thing as feeling an intrinsic value for all human beings or is Dr. Singer thinking of a social redirection??</span></div><div><span class="Apple-style-span" style="white-space: pre; ">Yet, via Singer's utilitarian approach, he does seem to leave open the door to the possibility that</span></div><div><span class="Apple-style-span" style="white-space: pre;"> society can and should look to the future and make every effort to reshape that future.</span></div><div><span class="Apple-style-span" style="white-space: pre;"><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><span class="Apple-tab-span" style="white-space:pre"> </span>But what do we do about the ordinary folks who have a distinct fear of our numbers increasing?</span></div><div><span class="Apple-style-span" style="white-space: pre;"> Take for example the case of the mother in Britain who wanted her daughter's sex organs removed to prevent </span></div><div><span class="Apple-style-span" style="white-space: pre;">her going through the discomfort of menstruation--- I don't believe this to be the real "interest". What I believe, no matter</span></div><div><span class="Apple-style-span" style="white-space: pre;">how immaterial, is that the mother had grown more and more anxious over the notion of unwanted pregnancy than</span></div><div><span class="Apple-style-span" style="white-space: pre;">anything else... </span></div><span class="Apple-style-span" style=" ;font-family:georgia;font-size:13px;"><blockquote style="padding-right: 40px; "><span class="Apple-style-span" style="font-size:medium;">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.</span><p><span class="Apple-style-span" style="font-size:medium;">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.</span></p><p><span class="Apple-style-span" style="font-size:medium;">But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a "disturbing precedent."</span></p><p><span class="Apple-style-span" style="font-size:medium;">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.</span></p><p><span class="Apple-style-span" style="font-size:medium;">"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.</span></p><p><span class="Apple-style-span" style="font-size:medium;">"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."</span></p></blockquote><p></p><p><span class="Apple-tab-span" style="white-space:pre"><span class="Apple-style-span" style="font-size: medium;"> </span></span><span class="Apple-style-span" style="font-size: medium;">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. </span></p><p><span class="Apple-tab-span" style="white-space:pre"><span class="Apple-style-span" style="font-size: medium;"> </span></span><span class="Apple-style-span" style="font-size: medium;">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.</span></p><p><span class="Apple-tab-span" style="white-space:pre"><span class="Apple-style-span" style="font-size: medium;"> </span></span><span class="Apple-style-span" style="font-size: medium;">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. </span></p><p><span class="Apple-style-span" style="font-size: medium;">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.<br /></span></p><p><span class="Apple-style-span" style="font-size: medium;">I plan to live to be at least 112 years of age, blight and all.</span></p></span><div><span class="Apple-style-span" style="white-space: pre;"><br /></span></div><div><span class="Apple-style-span" style="white-space: pre;"><br /></span></div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com0tag:blogger.com,1999:blog-31984317.post-26759393932229294292009-04-15T12:24:00.000-07:002009-04-16T13:54:45.294-07:00The Day I Drowned at Tin Can Beach, California<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFpxkBPd0UIdpFVJO4N8ng3CNjuDLXDY72swfTvN792NbLRkoXXqmYpxnXdKA8aE33Gk1n8mF-d-KhQJewujUKvTFTBGZ6yNW_SdxZ_hbSc-zqeGJDC74ibWxbbfVYTFKaYVl/s1600-h/ist2_5591096-another-day-at-the-beach.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 380px; height: 255px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFpxkBPd0UIdpFVJO4N8ng3CNjuDLXDY72swfTvN792NbLRkoXXqmYpxnXdKA8aE33Gk1n8mF-d-KhQJewujUKvTFTBGZ6yNW_SdxZ_hbSc-zqeGJDC74ibWxbbfVYTFKaYVl/s400/ist2_5591096-another-day-at-the-beach.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5325002688675859714" /></a><p class="MsoNormal" style="text-indent:.5in;line-height:150%"><span style="American Typewriter"font-family:";"><br /><!--StartFragment--> </span></p><span style="American Typewriter"font-family:";"><p class="MsoNormal" style="mso-pagination:none;mso-layout-grid-align:none; text-autospace:none"><span style="font-family:"American Typewriter";mso-bidi-font-family: "Times New Roman""><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfFpxkBPd0UIdpFVJO4N8ng3CNjuDLXDY72swfTvN792NbLRkoXXqmYpxnXdKA8aE33Gk1n8mF-d-KhQJewujUKvTFTBGZ6yNW_SdxZ_hbSc-zqeGJDC74ibWxbbfVYTFKaYVl/s1600-h/ist2_5591096-another-day-at-the-beach.jpg"><span style="mso-bidi-font-size:14.0pt;mso-bidi-font-family:Georgia;color:#002BF0; text-decoration:none;text-underline:none"><o:p></o:p></span></a></span></p> <p class="MsoNormal" align="center" style="margin-bottom:14.0pt;text-align:center; line-height:21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace: none"><span class="Apple-style-span" style="font-family: 'American Typewriter'; ">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.</span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:.5in;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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. <o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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.<o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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. <o:p></o:p></span></p> <p class="MsoNormal" style="margin-bottom:14.0pt;text-indent:48.0pt;line-height: 21.0pt;mso-pagination:none;mso-layout-grid-align:none;text-autospace:none"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter";mso-bidi-font-family: Georgia">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. <o:p></o:p></span></p> <p class="MsoNormal"><span style="mso-bidi-font-size:14.0pt;font-family:"American Typewriter"; mso-bidi-font-family:Georgia">Perhaps the event imprinted itself on my memory somehow?</span><span style="mso-bidi-font-size:10.0pt;font-family:"American Typewriter""><o:p></o:p></span></p> <p class="MsoNormal"><span style="font-size:10.0pt"><o:p> </o:p></span></p> <!--EndFragment--> <br /></span><p></p> <!--EndFragment-->Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com0tag:blogger.com,1999:blog-31984317.post-54196805734098973182009-03-28T13:22:00.001-07:002009-04-23T23:36:31.394-07:00The Best for Last?<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj34c_fKplooJpIP32TcF1TMmQfZMF_bq9khiUjcTU-wlj9zP7YD7Tb0MepmCZPs1iaqCVEwD8asLdfM6w-eB0X1fwO73QEg-HEqffxMjkAr-7M0RBEsMfyJkvual9sdg6yzrVU/s1600-h/nun.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 228px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj34c_fKplooJpIP32TcF1TMmQfZMF_bq9khiUjcTU-wlj9zP7YD7Tb0MepmCZPs1iaqCVEwD8asLdfM6w-eB0X1fwO73QEg-HEqffxMjkAr-7M0RBEsMfyJkvual9sdg6yzrVU/s400/nun.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5318336860397552066" /></a><br />I have never been able to outrun one specific memory of my childhood.<br /><br />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.<br />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”.<br /><br />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.<br />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.<br /><br />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.<br /><br />Apparently, I had drifted very deeply asleep and she wanted me back, awake, in a hurry.<br /><br />The smell went straight to my brain and did the trick.<br /><br />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.<br />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.<br /><br />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.<br /><br />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.<br /><br />I thought we were done for the day, but no. Mother had a surprise for me : a blood test.<br />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.<br /><br />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.<br /><br />I pray for the soul of that nun often. I have insisted to God that it just slipped out.<br />To date, God has never brought it up, but I think <span style="font-style:italic;">extra time</span> has been added to my stay in Purgatory for Defacing a Habited Nun.Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com1tag:blogger.com,1999:blog-31984317.post-31837426616820304852009-03-02T18:09:00.000-08:002009-03-02T14:25:27.450-08:00Epileptics, Please!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYSkqWsc-6_cjjqVH4Q6F9hGEcpY2KxZLvGRRboy4baBDv7gMkBmGBNvhEKkyl5TfD3Qar0TQZQsGqvwNSqva0_3CvbNhNlDokBKmoytvxgwp2zALZN5EsnnNNPTRVTmlHDLup/s1600-h/lady-writing.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 333px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYSkqWsc-6_cjjqVH4Q6F9hGEcpY2KxZLvGRRboy4baBDv7gMkBmGBNvhEKkyl5TfD3Qar0TQZQsGqvwNSqva0_3CvbNhNlDokBKmoytvxgwp2zALZN5EsnnNNPTRVTmlHDLup/s400/lady-writing.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5303582979882761922" /></a>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"... <div><br /></div><div>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. </div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>If it seems like it is coming back, we need our docs and our meds all over again, until the next remission.</div><div><br /></div><div>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. </div><div><br /></div><div>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! </div><div><br /></div><div><br /></div><div><br /></div>Paula Apodacahttp://www.blogger.com/profile/01073660379696929072noreply@blogger.com1