11.30.2010

sick. lovesick.

Sometimes I get sick of the whole damn thing. It all feels so ludicrous and pathetic while at the same time heart wrenching, tragic and miserable. I am sick of the seizures and the medicine. I get sick of Calvin’s idiosyncrasies; the incessant eye poking and staring at the sun, the relentless yanking off of his glasses, the wretched screaming, the constant drooling. I get sick of him throwing everything on the ground as soon as we give it to him. I get sick of changing diapers. I get sick of his poor balance, of his inability to truly explore his world. I get sick of him trying to bite everything: tables, chairs, magazines, windowsills and windows, the freezer, his shoes, the car, the sink, the water faucet, the hamper, the radiator, the wastebasket, his books and toys, the zipper on his coat, the shutters, the dishwasher, his glasses, his crib. Sick, sick, sick of it all.

And though Michael has helped me begin to understand that I may have some sort of superhuman patience, and the ability to maintain calm vigilance over these things, at times I get so sick of it I just have to scream—not at anyone but at the whole sorry situation. And if Calvin is present he usually starts to giggle, and at that I can do nothing but melt. In an instant all of my feelings of anger, self-pity, annoyance and tension dissolve into doting tenderness and love. For all of his peculiarities and quirks Calvin is a darling. He’s pure through and through, lovely and affectionate. There isn't a cruel or malevolent bone in his body; rather he strives to do his best to please in most any circumstance. I couldn’t ask for a finer son to show me how I can be a better person.


11.29.2010

inertia

Contrary to popular belief, epilepsy is not a benign disorder where you take a pill and everything is hunky-dory. Most people who are lucky enough to have their seizures controlled by one medicine—or often as many as two or three—suffer unpleasant, sometimes debilitating, side effects.

One of the most heinous consequences about Calvin’s intractable epilepsy—when the seizures are not controlled with treatment—is its impact on his development.

Calvin’s development has always been slow like molasses. It took him months before he could hold his head up. He couldn’t roll over from one side to the other until he was over a year. At fifteen months he was just beginning to drink from a bottle—as long as we held it for him—and he wasn’t able to get into a sitting position on the floor until he was a year and a half, and at that, it was an arduous task.

Just before Calvin turned two he started chewing food safely, trying finger foods and reaching for objects with more purpose. His visual tracking was improving though remained limited and delayed. Around his second birthday, after countless hours spent practicing on our hands and knees, he could crawl a few feet. But then came the seizures and with them came the drugs.

Within the first six months after his epilepsy diagnosis Calvin’s development continued to plod along at a snail’s pace, but progress was evident nonetheless. He took his first steps when he was nearly two and a half but his balance was such that he looked like a novice on a tightrope. Spills were frequent and since his protective reflexes were practically absent we remained at his side—as we do today—to prevent injury. But the seizures increased and so, concomitantly, did the drugs.

Whenever we initiate a new antiepileptic drug (AED) or increase the dose of an existing one, Calvin goes berserk for four or five solid days. He screams and whines terribly but then, worst of all, he looses acquired skills. Just when he had learned to pull himself up into a stand we changed his meds and he lost it. He used to answer our simple questions with a quick, affirmative inhalation, akin to the way some French say “oui”, but we were forced to alter his meds again and that wonderful expression vanished.

A few months before Calvin’s third birthday I was convinced he’d be walking by himself at any moment. That dream has never materialized though I practice with him like a coach drills her athletes, and for hours every day.

By the time Calvin was almost four he had progressed to crawling up the stairs, with help from us. He was gaining some strength and coordination and had begun to engage with his world. Then, however, we initiated the Ketogenic diet, and while his three seizure drug doses remained the same, the diet altered his metabolism and his AED blood levels jumped as much as thirty percent. Unfortunately, the seizures stood their ground. Calvin, on the other hand, did not. He fell into a kind of stupor. His bright eyes became lackluster, dead orbs, he hardly smiled and he no longer had the desire, strength or ability to crawl up the stairs.

While on the diet for over two years his development essentially plateaued. Nearly three years later Calvin is doing little more than he did when he was four, though a radical change in his medication has lessened his seizures and significantly modifying the diet has brought back our happy, smiling boy.

It is difficult to know what exactly is causing Calvin's increasingly protracted development—if this inertia is because of his deficient brain, the scourge of the seizures, the drug side effects or, most likely, some dreadful combination of all three. However, no matter how you slice it—and in the unlikely event he'll outgrow the disorder—the seizures and the drugs continue to be ghastly offenders and risks to our little boy's life. We need to find a cure.

Please continue to share Calvin's story with your friends. Help bring us one step closer to a cure. Like Calvin, just do it one step at a time.


11.28.2010

out of control

Shortly after my father lost his long battle with cancer over fourteen years ago, I dreamt vividly about him in what has become a recurring nightmare. In the dream I'm a kid again playing in our gravel driveway with my friend Monica. My father goes to get something out of the garage. As he lifts the wide, rolling door hundreds of large, colored helium balloons burst out. Each is tethered to one thick, braided rope loosely coiled at the entrance.

The huge mass of balloons escapes swiftly into the air and as it does the heavy rope snakes and flops like an errant fire hose. Inadvertently, my father steps into the center of the coil and—like in seafaring movies—becomes entangled. The end of the rope lassoes one of his ankles, yanks his feet out from beneath him, and seems to suck him upwards with the might of a tornado. As I frantically reach out to him he silently sails away, his strong, slender arms outstretched beseechingly.

Craning my neck and shading my eyes from the sun I watch my father, red-faced and upside down, as he soars above, diminishing in size until he and the balloons appear as a speck. My horror is—not only in my acute awareness of his impending demise—but also in my utter lack of control in either preventing the situation or from saving him. I awake from the dream suddenly with a hollow, sick feeling in the pit of my stomach.

This same ill feeling has become familiar to me since my son started having seizures when he was two. There was a time when Calvin was having one to two dozen lengthy tonic clonic (grand mal) seizures each month even though he was on three antiepileptic drugs, plus a rigorous diet, all aimed at curbing them. Each seizure is as unsettling as the last and they appear as an infinite chain.

Calvin has seized in the bath, he has seized in his crib, in his johnny-jump-up, in the grocer, in the doctor’s office and in the car while speeding seventy miles an hour down the highway. And though we are doing everything in our ability to prevent this persistent trauma to our child we feel ultimately powerless and out of control. The feeling is loathsome and bilious, and though I try to maintain control and hold on to hope as tightly as I can, I still feel Calvin's condition slipping just beyond my grasp.

11.27.2010

you're not immune

Epilepsy can strike anyone at any time. Preemies are at risk, kids with Autism are at risk, people with Alzheimer’s and who’ve had strokes can develop epilepsy, people with brain tumors can seize and our fighting troops who have sustained Traumatic Brain Injury (TBI) often suffer from epilepsy—or, it can just happen. It seems likely that while other diseases are on the decline, because of changes in lifestyle and early detection, epilepsy might be on the rise.

I often mention the number of people afflicted with epilepsy in an effort to underscore how obscure the disorder remains. It might be likely that—without being aware of it—we each know someone who suffers from epilepsy, though perhaps they're in hiding. Many people with epilepsy wear a cloak of shame because it is still a closeted disorder with a history of great stigma, fear and misunderstanding.

Three million Americans suffer from epilepsy, more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. As many new cases and annual deaths occur from epilepsy as from breast cancer. Yet funding for epilepsy pales in comparison and, regrettably, it remains off of society's radar.

To learn more please go to my Epilepsy Facts page and view these archived blog posts:

the truth about epilepsy
the stigma of seizures
SUDEP
scores of seizures

Please share Calvin's story with your friends. Help bring us one step closer to a cure. It's not hard, just do it one story at a time.



11.26.2010

life just is

It’s not uncommon for people who meet me and learn of Calvin’s hardships to say, “everything happens for a reason.” I usually try hard to suppress my disdain for what I believe to be an erroneous, though well-intentioned, theory. My response is simply to say that I don’t regard the premise to be true, but rather, that I to choose to construct meaningful outcomes from life’s experiences, much like choosing to see the glass half full instead of half empty.

Another phrase I have heard often over the years is, “life’s not fair”. I never really cared for this assumption either. It has always seemed to me—even as a child—that life is neither fair nor unfair. Life just is.

Some may hold fast to these beliefs to find solace in the presence of suffering, to somehow understand why suffering occurs at all, and to make sense of something so utterly senseless as a profoundly ill and debilitated child. And although I myself may wonder why Calvin is so afflicted—at the same time wishing he were not— I find no comfort in the idea that some greater purpose has been designed that requires it of him. Rather, the knowledge and conveyance of this belief, especially by those who do not know what it is to care for a child with such extensive disorders, honestly turns my stomach.

I have no need for that kind of solace. I need only to be there for Calvin and to put all of my effort into finding a way to lessen or stop his suffering. I could choose to wallow in self-pity over my sick child while trying to console myself with some feeble, perverse notion in an attempt to put it all into some sort of context that explains it away and makes it okay. Instead, I choose to seek out and underscore all of the incredible things that I experience because of Calvin, and simply be content to know that he is who he is, not owing to some deliberate plan. And since life just is—which is okay by me—and while I am here, I will make the most of it as it keeps coming my way.

11.25.2010

things I am thankful for

A juicy bird.  Dental floss.  The plastic thingies on the ends of shoelaces.  Someone else to kill the lobster.  Diaper genies and baby wipes.  Butter.  Strong coffee with warm milk.  Booze.  My husband, who likes to cook, is good at it and looks cute in an apron.  Sausage.  The reserve fuel tank.  Tweezers.  Alec Baldwin's voice.  Dripless candles.  Johnny-jump-ups.  +1.5 reading glasses.  Obama.  Gravy.  Rudy the dog.  Days without seizures.  Witticism. Borrowed pennies at the checkout counter.  Ma and Pa.  Dishwashers that don't require pre-scrubbing.  Adam Sandler, Ben Stiller and Will Ferrell.  Garlic mashed potatoes.  Kick-ass boots.  Frank Zappa (within reason.)  Frosty's donuts.  Matches in the bathroom.  A new sponge.  Sleeping in until six (if only.)  Public broadcasting.  Carrot cake with cream cheese frosting.  Memory.  Dry wood.  A good tattoo.  Stevie Wonder.  Pie.  A husband who does the laundry.  Recycling.  A thesaurus.  Cheese.  Long underwear.  Friendship.  Salvation army finds.  Nurses.  Siblings, nieces, nephews and in-laws.  An oven that works without having to hit it every five minutes.  Screwpull: works every time.  Brussels sprouts with truffle oil and Parmesan.  Old jeans.  Blog readers.  New Yorker cartoons.  A growing vocabulary.  Teeth.  Bran cereal.  Calvin.

11.24.2010

know what you don’t know

Four years ago last week Calvin was hospitalized for status epilepticus, a dangerous—sometimes lethal—cluster of uncontrolled seizures. The trigger was a fever and a prickly rash covering his entire torso. Once again he ended up in the PICU where he continued to have seizures. Calvin was two and a half and was on his third antiepileptic drug, Depakote.

What I knew about Depakote, compared to some of the other antiepileptic drugs (AEDs), was that it caused a higher incidence of liver damage, but his neurologist at the time opined that it was one of the better drugs in terms of efficacy. What I didn’t know about the drug was that Calvin—due to his age and his developmental deficits—was considered high-risk for that side effect. But I soon found out.

Since Calvin was diagnosed with epilepsy I have delved into the world of AEDs, their application, efficacy and side effects. I have a mind for this detail and the ability to recall the minutiae of each drug and treatment that I research. I uncovered the risk that Depakote posed for Calvin and broached the subject with his neurologist. He simply dismissed my concern and, instead, doubled Calvin’s dose. The drug, at near toxic levels—and like all the others—never showed any benefit.

Several months later Calvin was back in the PICU, again because of status epilepticus. The Depakote had proved ineffective so his neurologist elected to change course. Calvin would try a newer drug, Lamictal, which necessitated a gradual titration over the course of several weeks. In the meantime he would remain on Depakote as a buffer until the Lamictal reached a therapeutic level.

Routinely, when Calvin is admitted to the hospital, his blood is drawn to check for illness and to assess AED levels. Unfortunately, Calvin is what we call a “hard stick”. Because of his low muscle tone finding a vein is difficult and thus the procedure is a painful and often lengthy one. For this reason I make a point to petition for the very best phlebotomist, but usually to no avail. Instead, one or two nurses make failed attempts to draw Calvin’s blood, causing him pain and bruising in his arms, hands and feet. Eventually, my initial plea is met; an expert is summoned who successfully—sometimes painlessly—finds a vein.

This time, as with every blood draw, I asked to review the lab request. I noticed the absence of liver enzyme tests, so I told the nurse to add them to the order. She balked, saying that the doctor hadn’t requested them. I insisted and explained that Calvin was a hard stick and I wanted to avoid multiple blood draws, anticipating that the neurologist might eventually want the liver functions. The nurse conceded.

When the results came back I was not surprised—though I was quite vexed and concerned—to see that one of Calvin’s liver enzymes was ten times the normal range, indicating the beginning of liver trouble. As a result Calvin had to terminate the use of Depakote abruptly. We therefore had to rethink his drug regime to include a medicine that could be initiated at a therapeutic level. Had it not been for my persistence about the enzyme tests the crucial indicators may have gone unnoticed ultimately risking illness and damage to Calvin's liver.

Due to circumstances such as these I have learned that you just have to know what you don’t know.

11.23.2010

remarkable boy

After a day of seizures, and before what would be another sleepless night, I went upstairs to say goodnight to Calvin. He was standing in his crib, like he does most nights, waiting for me after having been put to bed by Michael. I laid him back down, ran my fingers through his thick hair, told him he’s my best boy, that I love him and goodnight. I tickle his ears, so soft, pink and springy. I remember what they were like when he was born. He was a preemie—six weeks early—and the cartilage in his ears hadn’t formed yet. They laid delicate and flaccid against his head like wilted flowers.

Sometimes I marvel at what a beautiful child my boy is. A thick, silky, auburn mass— with strawberry highlights that catch the sun—has long since replaced the curly blond locks he had as a baby. His flawlessly smooth skin covers long slender limbs and a supple round belly. Are his large eyes still indigo? I think so, just not as deep as before. Such an amazingly perfect body begs the question, “what happened to his brain?” Why couldn’t he have been born with nine fingers and nine toes instead of missing much of the white matter in his brain? What went so wrong? And like so many questions, we don’t have the answer; it just is what it is.

But what Calvin lacks he makes up for in his gentle spirit, in his dimpled smile, in his adorable giggle, in the way he lovingly touches our faces and necks and in the way he kisses our nose. He’s our one and only remarkable boy and I don't know what I'd do without him.


11.22.2010

why?

After waking this morning Calvin and I were resting in bed together when he suddenly shrieked, stiffened and started to seize. I rolled him onto his side and could do nothing but watch for three long minutes as his lips and fingers turned blue. Only six days have passed since Calvin’s last seizure and just six since the one before.

Earlier, at 3:00 a.m., I knew something was amiss. Calvin had awakened, knelt in his crib and called for me with his usual “uh-uh” which I believe means “mama”. I got up and offered him some water—which he surprisingly refused—then laid him back down and covered him. This happened several times so I decided to change his diaper. I felt him trembling. Although Calvin wasn't "due" for a seizure we brought him into our bed and Michael went to sleep on the futon so everyone could try to get some shut-eye. Calvin was restless and awake for over an hour.

Going on two weeks now Calvin has had a stubborn cold. Illness and stress can lower his seizure threshold, so we weren’t surprised when he had the seizure twelve days ago. We didn’t expect, however, to see the one in the bath last week, nor the one this morning, particularly since we had recently increased his antiepileptic drug.

Each time Calvin has a seizure Michael and I ask ourselves why. Could the increase in medication have a paradoxical effect and actually cause more seizures? Was it something he ate? Was he sleep deprived, over-stressed or over-stimulated? Does he have an ear infection or pneumonia? Does he have a fever? Is the fact that he often doesn’t have a bowel movement the day before a seizure a cause, or an effect, of seizure activity? Was it because of the full moon?

Answer: no one really knows. All we can do is fine-tune, and limit, the contributing factors and hope to, one day, strike the perfect balance that will eliminate his seizures once and for all or—better yet— find a cure.

Please share Calvin’s Story with your friends, family and colleagues to help raise epilepsy awareness. Help us find a cure. It's not hard, just do it one story at a time.

11.21.2010

cold worry

One of the side effects of the anti-seizure drug that Calvin takes is respiratory suppression. He already suffers from global hypotonia, or simply put, low muscle tone. This neurologically based condition affects his entire body, not just his extremities and trunk, but also his gastrointestinal track and his respiratory muscles. And because Calvin cannot walk unassisted, much less run around and get aerobic exercise, his lungs aren’t “worked out”, which puts him at greater risk for respiratory viruses and infections.

So, when Calvin gets a cold virus, especially since he began taking this drug, I lose sleep. The other night he was awake for over an hour congested and coughing up mucous. My great fear is that he will contract pneumonia and end up in the emergency room as he has on several occasions in the past.

Influenza is another great concern for our family. In 2009 thirty-six children died in this country from influenza A—H1N1. Of those children 67% had one or more high risk medical condition and of those, 92% had neurodevelopmental conditions, like Calvin. So every year all three of us get vaccinated no matter what.

I have a friend whose son was born with serious neurological deficits of unknown origin. Regrettably, I never had the pleasure of meeting the boy but she told me that, though he could not do many things including speak, he was a very gentle spirit—a bright star—and made an indelible impression on everyone he encountered. Her son was pretty much confined to a bed or a wheelchair. He too suffered from epilepsy and low muscle tone and was very susceptible to frequent bouts of pneumonia. At the tender age of fourteen my friend's son lost that battle.

So, when it's cold and flu season I tend to worry a lot.

11.20.2010

good docs and bad docs

Since Calvin’s birth we have made the acquaintance of dozens of doctors including various neonatologists, several anesthesiologists, a couple of intensivists, five pediatric neurologists, a few gastroenterologists, an urologist, two geneticists, an ophthalmologist, a neuro-ophthalmologist, a nephrologist, an osteopath, an endocrinologist, a pulmonologist, some radiologists, a few epileptologists, several pediatricians, a developmental pediatrician, and a sleep specialist. Some we’ve considered pretty bad, others rated so-so, many have been good and a select few are downright remarkable.

You know you’ve met a bad doc when she tells you that you have to worry. Some docs crank up and up and up on your child’s seizure medicine—sometimes to toxic levels and in the face of your obvious doubt—even though it doesn’t seem to be making a difference. Bad docs have chips on their shoulders, are haughty, condescending and indifferent. These docs hate questions yet they act as if they have all of the answers.

Good docs, on the other hand, embody everything of value that one would expect from a close friend. Expert listeners, good docs also treat you as the equal that you are and encourage you to call them by their first name. They acknowledge that you know your child best and consider you an integral member of their team. A good doc listens to a litany of questions, answers them to the best of her ability and strives to think progressively. They have your child's best interest and quality of life in mind and aim to care for him holistically. And, of great import, good docs feel and demonstrate genuine compassion and concern for you and your child.

In short, good docs, you rock.

The Three Stooges

11.19.2010

drug dream

After Calvin had his seizure in the bath the other night I had a bad dream. In the dream we were out of town visiting Calvin’s Grandparents. It was time to give Calvin his evening seizure medicine that I had laid out earlier. When I went to find the pills they were gone. Panic-stricken, everyone began scouring the entire house in hopes of finding them. I described the small, clear plastic container that I use to store cut pills, but no one had seen it. Then it occurred to me that Calvin’s medicine might have been accidentally mistaken for another and put away, so we examined each and every prescription bottle in the house.

As the dream continued it became apparent to me that our search to unearth Calvin's missing seizure drugs had become futile, so I needed to take different measures. Nearly two hours had passed since Calvin was supposed to get his medicine and so I began dreading a seizure. I picked up the phone to call his doctor to get a new prescription sent into a local pharmacy. Each time I dialed the number my fingers failed me; I kept hitting the wrong button—over and over and over—and I could not get through. Finally, in my anguish and desperation, I cried out, and thus woke myself up from the dream. And there was Calvin, sleeping soundly, nestled up next to me with his smooth, warm legs draped across my side.


11.18.2010

the calvin quotient

Every so often I hear parents talk about how time flies and how quickly their little ones are growing up. My husband and I, on the other hand, continue to experience what I like to call the Calvin Quotient, which can be described, in a way, as an expansion of time.

Since just before Calvin’s birth we have been bombarded by an array of challenges dealing with his health, the medical establishment and simply learning to cope with the loss, grief, stress and complication that accompany having a child with disabilities and with epilepsy. Our lives quickly became jam-packed with appointments to see dozens of specialists for Calvin’s various health and developmental concerns. This frequent and regular exposure to unknown territory—both emotional and literal—and characterized as much by our fatigue as by our bloated calendar, felt as if we were experiencing in one year what another might experience in the course of several years or perhaps even over a lifetime.

Coupled with this intense, insane pace and its steep learning curve, and contributing to the Calvin Quotient, is the nature of Calvin’s development itself, which has always been painfully and utterly protracted. New skills have taken Calvin weeks, months, sometimes years to develop, and at times have been all together lost due to seizures and drug side effects. One could say that Calvin is six going on one or two.

So, while perhaps time flies when you’re having fun, and contrary to what one might think having read what I have just written, I have found great reward in Calvin’s quotient. That is not to say that I don’t wish every day that things were different. Of course I, like any parent, wish that Calvin was healthy and better able to explore a child’s world of possibilities. But, he is not, and because he is not I have learned a great deal, about things I'd never have imagined, in very little time. I have felt depth of emotion I'd never felt before. I revel in spending hours upon hours watching him, touching him, listening to him and all the time in awe of him. We while away the hours in each other's presence—in each other's arms. No, my boy Calvin is not growing up too fast.

Halloween 2010 photo by Michael Kolster

11.17.2010

bad in the bath

From last night:

Tonight, while Calvin was taking a bath, he let out a shrill cry—the kind you hear from little kids during recess—but his was because he was having a seizure. I whisked him out of the tub; he was rigid, stiff as a board, and quivering. I ran to the bedroom and laid him on his side on the quilt. His lips started to turn blue, his convulsions intensified and I began to sob. But then I remembered that I have to be strong for him, and so I started kissing him on his neck, something I cannot manage when he seizes in his crib. I told him how much I loved him. His seizure soon stopped; it had lasted a minute and a half—half as long as his typical seizures.

It's the first time in months that he's had a tonic clonic seizure while awake in the daytime, though we recently increased his seizure medicine, and I can't remember the last time he seized in the bath, its been so long.

For almost a week Calvin has been ill with a cold virus. This morning, however, he seemed to be doing much better. He slept well last night, awoke happy and, with a smile on his face when I brought him into bed, he turned to me, put his arms around my neck and pulled me in close. He likes it when I rest my head on his cheek and kiss him behind his ears, so I did and he giggled and cooed like a baby. Then Michael joined in with tickling which sent Calvin into sheer bliss.

At school, however, Calvin was quiet and not his usual self. Back at home he napped long and deep while his nurse kept vigil. After the nap he was slightly irritable with a bit of whining mixed in with some crazy laughter—which made me dubious— but I reassured myself that he was not yet due for a seizure; it had only been six days since the last one. He suffered the seizure in the bath nonetheless.

But, my Bumble bounced back amazingly well, took his seizure medicine, ate his Greek yogurt with blackberries and went to sleep. I wear the baby monitor on a fabric ribbon around my head, like some sort of hippie headband, and I can hear Calvin’s sweet breathing as I write.


11.16.2010

friends and neighbors

In the early days just after Calvin was born, and over the years when he was repeatedly hospitalized in the pediatric intensive care unit (PICU) due to seizures, close friends and neighbors always lent us a hand. I remember, when Calvin was just a few weeks old, dining on a Thai food feast that our friend hand-delivered to our hospital room. Another dear friend brought us many wonderful meals, including sushi, when Calvin was in the PICU; this was no small gesture especially since hospital food, if you can get it, leaves a lot to be desired. At times we bunked with a buddy of mine who lived near the Portland medical center since it was sometimes difficult to sleep with Calvin in the PICU. And once during a cookout we were taken away by ambulance; our hosts brought an array of barbecue, summer salads and dessert on a platter—complete with serving dishes and cutlery—straight to the emergency room.

We owe a debt of gratitude to these comrades since Michael, Calvin and I do not have family that live nearby. Our relatives are spread out in every direction from Florida to California, Arizona and Washington. Fortunately, our kin have been incredibly supportive from afar and have visited us here in Maine on occasion, but because of the distance we cannot enjoy frequent visits from Calvin's Grandparents, Aunts, Uncles and cousins.

And, so, during trying times of little sleep and long, tiresome days spent in hospitals our amazing friends and neighbors have brought us sustenance, both nutritional and emotional. Full, homemade dinner spreads have been toted to our house and, subsequently, the dirty dishes vanished! Our friends and neighbors have walked and boarded our dog. They’ve plowed our driveway, taken in our mail, shopped for our groceries and donated clothing, toys and books to Calvin. A kind friend and neighbor, who is a registered nurse, has watched Calvin at night while Michael and I go out. And once, when we had to take Calvin to the ER before the crack of dawn, a close friend came over at a moment's notice to stay with my visiting mother who has Alzheimer’s and couldn’t be left alone.

We might not be in such good shape if not for our friends and neighbors. 

11.15.2010

scores of seizures

Many children with epilepsy suffer hundreds of seizures each day even though they take medication aimed to curb them. It might be difficult to understand how harmful repeated seizures, albeit short, can be to a child’s development. Imagine if you were reading an article and every few seconds someone tugged on your sleeve and asked you a question. These interruptions would make it very difficult, if not impossible, to absorb the details or perhaps even the gist of that article. This is analogous to a developing brain disrupted by relentless scores of seizures.

These short seizures come in various types. They can be absence seizures (petit mal) during which a person loses consciousness, though not posture, for several seconds. Myoclonic seizures cause sudden, brief, muscle spasms. Drop seizures, known as atonic seizures, are dangerous because the person experiences a sudden loss of body tone and drops to the ground, which can cause serious, sometimes fatal, bodily injury.

My six-year-old son Calvin mostly suffers tonic clonic (grand mal) seizures that can last as long as three minutes. In the tonic phase he stiffens and stops breathing and during the clonic phase he convulses. I can only imagine that these repeated, uncontrolled electrical storms are frying his brain.

At least a third of children with epilepsy have seizures that are not fully controlled by medication or other treatment. My Calvin is one of them. These kids experience a worsening of developmental deficits, regression, harmful side effects from drugs and even death. The only hope our children have is to find a cure.

In honor of Epilepsy Awareness Month please share Calvin’s story with your friends, colleagues and families. It’s not hard, just do it one story at a time.

tonic clonic or grand mal seizure

11.14.2010

firestorm forty-five

When Calvin was two he suffered a 45 minute convulsive seizure. Michael and I thought we would lose him.

We were at a summer cookout at our friends' house along the river. It was a pretty hot day. Calvin and I were relaxing in the window seat when he became pale and listless, as if he were in shock. His eyes deadened, his lips and fingers became tinged with blue and, with a sick grimace on his face, he started gnashing his teeth.

Our hosts were in tune with what we had been experiencing in the four months since Calvin had been diagnosed with epilepsy—and for that matter—of the hardship we had endured since just before his birth. Without pause they called 911.

We administered Diastat (rectal Valium) and after four minutes the seizure stopped. In the ambulance, however, Calvin started to seize again. The EMTs gave him a second drug which halted the seizure but he remained in a disorienting post ictal phase that often occurs in the wake of a seizure.

Once in the emergency room we stayed close by his side to monitor him. It was surprising and odd to me that the Diastat hadn’t knocked him out. Rather, he fell into a kind of catalepsy; he remained in a trance, unresponsive, and stared vacantly for almost an hour. I kept telling the ER staff that something was wrong, but their only response was to try to quell my concerns explaining that it was simply a post ictal state. My gut was telling me differently.

During this time two nurses had tried to insert an IV to replace fluids Calvin had lost from repeated vomiting. For what must have been half an hour they stuck needles into both arms, both hands and both feet, unsuccessfully. Then I noticed Calvin gnashing his teeth again and his body began to twitch. Just as the pediatrician arrived Calvin was going into another seizure; the medicines had failed to control the cluster. This meant Calvin needed a bolus, or large dose, of Phosfenytoin and to do it they had to get that IV in. The pediatrician attempted for twenty minutes as Calvin’s seizure raged on and became more violent. We felt utterly helpless and were losing hope that a vein could be found when at last the doctor met with success and the bolus of medicine entered his system.

Like a freight train speeding downhill without brakes, the longer a seizure continues the harder it is to stop. Brain damage is considered possible after five minutes of a seizure and at thirty minutes the vital organs—heart, lungs and brain—are at risk of failure. Over twenty minutes had passed since Calvin had gotten the bolus and still the seizure showed no signs of stopping. In my desperation I started smothering Calvin with kisses on his neck. I told him how much I loved him while Michael caressed his body and legs and at that moment Calvin’s seizure stopped. It had been a forty-five minute firestorm, and Calvin, our little trooper, had survived it.

11.13.2010

we got it good

At the close of the nightly PBS news hour they often air an ongoing honor role of troops killed in the Iraq and Afghanistan conflicts. A photograph of each fallen soldier is accompanied by name, rank, age and hometown. Saddened, this always gives me great pause to know that they’ve been lost to someone.

Similarly, I am frequently struck by hearing the news of tragedy that befalls so many innocents in the world: victims of Katrina, of the earthquake and displacement and epidemic in Haiti, of the floods in Pakistan, of the tsunami in Indonesia, of the famine, genocide, disease, neglect, war, exploitation, wrongful imprisonment and poverty of millions of our fellow mankind.

Sometimes I sink into despair when I reflect very deeply about our own situation with Calvin. I consider the thumping he takes from his uncontrolled seizures. I think of the debilitating side effects he suffers from the drugs he has to take. I ponder his compromised and uncertain cognitive abilities, his visual and physical deficits and the limits, therefore, placed on him. Daily, I am reminded of—and I mourn—the loss of his ability to make true friends and to do the things that his peers can do. For my loss of the promise of what parenthood could be, and on behalf of my family, I grieve.

But then I turn my thoughts to the unfortunate, to those who have only the shirt on their back and who have lost their home, their parents, their children or their entire family. I consider the millions who have no running water, no heat, no clothes, no doctors, no schools, no human rights, no job, no food, no security, and I am deeply humbled.

Calvin, on the other hand is—and for that matter many of us are—warm and dry and fed and clothed. We benefit from outstanding medical and educational services. We have an ample, comfortable home, and clean hot water on demand. We can buy what we need—or simply desire—from the store or the Internet at any given moment. We have recreation, we have leisure, we have community. We are free. Most importantly for us we can provide for Calvin and he is loved beyond measure.

I must practice taking nothing for granted in this life. I must show great compassion and understanding to others. I must share what I have with those in need. I must be mindful of how fortunate we are. I must remember that we got it good.

The Irish Famine by George Frederick Watts

11.12.2010

jesus mary joseph

I'm not a religious person, but since Calvin was born I find myself using a lot of names from the pages of the Good Book.

I mean no disrespect to the devout; I simply wish to underscore, as I look both introspectively and retrospectively, how vital it has been for me to release a certain amount of pressure from my cooker from time to time. So, on occasion when vexed, exasperated or irked, or even excited, I have been known to shout—and I don't think I am alone here—the names of whom believers call The Father and The Son and including The Son's parents.

This characteristic of quoting names from the Bible must be genetic as I clearly remember my mother, when she was very frustrated, shouting, "Jehoshaphat!"

My favorite expletive, though—and the one I seem to opt for most frequently—may not exist in the gilt, leather-bound pages of Scripture. This profanity happens to be the oft-despised, yet renown, F-bomb. There's nothing quite like the word for it can be used with such nuance so as to suit seemingly limitless application! I must not fail to mention how mellifluous it sounds—though my adored mother-in-law would beg to differ—whether whispered or mumbled, drawn out, sharply punctuated, screamed excitedly or very plainly stated.

And though I try as I might to refrain from dropping this bomb excessively, whether due to enthusiasm or exasperation, it is my preferred mode of expression over kicking cabinet doors or throwing a shoe. In any case, and lucky for me, if my beloveds are around they usually just laugh.



11.11.2010

harbingers

Yesterday, in his crib during nap time, Calvin laughed hysterically for over an hour. He was alone in his room. It's distressing that my precious boy's laughter I often consider suspicious—a bad omen—rather than being able to delight in it.

With Calvin there are usually some harbingers of an impending seizure: lots of crazed screaming 24 to 36 hours prior, irritability, wanting to be picked up, illness and/or unprovoked laughter. All of these things add up to trouble. Well, last night we were in for some trouble.

Calvin's grocery store behavior the day before was the first indication that a seizure was looming. Recently, we had increased his anti-convulsant medicine and it had been two weeks since his last seizure—the longest stretch since August—so, although I was skeptical, I was hoping he'd sail through unscathed. At eight o’clock last night those hopes were dashed.

Having just finished dinner Michael and I were sitting on the couch reading. I heard an odd squeal over the baby monitor and sprinted upstairs. Calvin was seizing. His ears were completely blue and he wasn't breathing. During a seizure there is nothing to do but put him on his side, keep him from banging his head and simply wait it out. There is a clock with a second hand near his bed that I use to time his convulsions which are up to three minutes long. The first phase—the phase during which he doesn’t breathe—seemed to last longer than usual.

We always stroke his body and talk to him. I tell him, “it’s okay Calvin, Mama and Daddy are here”, or “you can do it, Calvin”, or “it’s almost done, honey.” It’s unlikely that he hears me in his unconscious state, but I do it anyway thinking, each time, it might make a difference.


11.10.2010

grocery store blues

I have a love-hate relationship with the grocery store. It used to be a place that I dreaded for all of its glowing mothers toting healthy bouncing babies. Over the years, however, the staff has made our acquaintance and regularly shows great kindness and concern for our family.

Lately, and for reasons that are unclear but are likely seizure or drug related, Calvin has taken to manic behavior the moment I put him in the grocery store cart. Yesterday proved to be no exception.

Upon entering the store I bumped into an acquaintance—someone who has serially ignored Calvin as if he didn’t exist—and this time was no exception. Small talk ensued, I asked how he was and he said, "oh, one step in front of the other." His comment struck me as some kind of tragic irony; he was describing exactly what I was urging Calvin to do, albeit against great stubbornness and refusal.

Mostly unruffled, we moved on to the produce department where Calvin began his usual antics which had everyone gawking. Somehow we made it successfully through the deli, the meat department, the dairy department and finally to the checkout lane, all the while disturbing the peace. By that time I had taken Calvin out of the cart and propped him on my hip—which is no easy task—in hopes of stopping his incessant screaming. Holding my 38 pound kid, who doesn’t hold on to me, and with only one hand free, I fumbled clumsily with the groceries. The plastic package of blueberries sprang open and they spilled all over the floor. Of course, I had chosen the express lane.

In order to finish paying I had to put Calvin back in the cart where he resumed his manic howling. One nice associate asked if he was okay and I told her I thought a seizure might be brewing. All screeching aside, she commented on how cute he was and stroked his thick hair as the other associate replaced my package of blueberries.

Thoroughly dejected and while exiting the store a middle-aged man walked past, glanced at my shrieking son out of the corner of his eye and remarked clearly, “wow.” As he walked away I replied within earshot—in my best Valley Girl accent—“whatever.”

By this point I was frazzled and nearly in tears but I successfully regained composure and pat myself on the back, for Calvin has given me the strength of an Amazonian woman, the patience of Job and the composure of a Buddhist Monk—at least sometimes.



11.08.2010

waterboy

There's no doubt about it, the kid loves water. If he had it his way he'd stay in the bathtub for hours just splashing and spinning and drinking and splashing some more. The water circling down the drain seems to interest him but mostly Calvin simply enjoys the buoyancy which allows him to scoot around with little effort, unlike on dry land. Often he experiments with putting his entire face under water, opening his eyes and blowing a bubble or two.

Even the sound of splashing delights Calvin. Whenever I turn the faucet on and the stream of water gushes out he gets all happy and excited. Maybe, since I swam often when I was pregnant—and perhaps on some visceral level—he remembers the gentle rocking and sloshing in utero.

When Calvin's class visits the college pool weekly he dons a little purple "warm belly"—a polypropylene wetsuit shorty—and happily frolics around in his caretaker's arms until he gets covered in goosebumps. And last summer, Calvin felt for the first time, the warm, soothing ocean waves lapping over his body. He seemed enchanted by the surf as it swept over him and buoyed him up; he giggled and laughed and was visibly surprised—though not upset—by the very salty taste.

I'd like to think that one day Calvin could learn to float or dog paddle at the very least. The water seems to give him such a sense of freedom and pleasure. Maybe he'll take after his mama and swim like some kind of fish. Who knows?

photo by Michael Kolster

early days – part three

It took me 21 hours to come off of the anesthesia and morphine drip and get myself into a wheelchair before meeting our newborn baby boy.

Each time prior to entering the NICU we washed our hands and forearms and donned masks. Calvin’s isolette was a small, clear plastic incubator where he lay hooked up to heart rate, respiratory and oxygen saturation monitors with an IV splint on his hand. He was sleeping through a racket of buzzing alarms. As I peered in I could hardly believe my eyes—I recognized Calvin’s face—it was like mine. I softly said, “hi Calvin” and, for the first time in his life, he opened his eyes as mine filled with tears.

I spent hours studying his tiny body. His nipples were no bigger than grains of sand and his soft translucent skin revealed exquisite, branching veins. Membrane thin fingernails smaller than sesame seeds tipped his slender fingers.

Calvin's first week was spent in the NICU. Surfactant had facilitated his breathing but he remained intubated and on a respirator for several hours. Later, he struggled to bat away continuous positive airway pressure hoses that were stuck uncomfortably up his nostrils. Unable to maintain his body temperature and with an extremely elevated heart rate Calvin was still vulnerable. When I held him his wee body felt limp in my arms and so delicate I feared he might break. With each passing day, though, he improved until he was able to move to the continuing care nursery.

For three and a half weeks Calvin stayed under the care of the neonatologists and nurses in the Portland hospital. Michael and I slept nights at the nearby Ronald McDonald house and, from nearly dawn and into the night, we kept vigil beside Calvin. Countless, painful, tiresome hours I spent pumping breast milk. Without having developed the suckling instinct nursing proved a great effort for Calvin. Further obstacles—low muscle tone and the fact that he was tongue-tied—made latching on difficult.

When Calvin stabilized we were transferred to the maternity ward of our local hospital where we boarded for another three and a half weeks. Here we enlisted in nursing boot camp and we continued the drill; weigh Calvin naked on a sensitive gram scale; nurse him until he fatigued; weigh him again and calculate grams ingested, which was usually only a fraction of the total goal; administer the balance, employing my pumped milk cache, via nasogastric tube; repeat every three or four hours. We were desperate to be released from our incarceration so nights Michael attempted feeding Calvin the bottle. Thankfully, and against great odds, Calvin mastered the art of nursing. I was so proud. After nearly two exhausting, stressful months we were finally free to take our newborn home. It was a day I'll never forget.

photo by Michael Kolster

11.07.2010

early days – part two

Four days before my scheduled cesarean in Boston, Calvin decided to come early. I woke up at 1:00 in the morning and, though I did not feel contractions, I knew my water had broken. It was February and an ice storm was wreaking its havoc. Michael and I drove carefully down the deserted, icy streets to our local hospital. After several conflicting tests they confirmed that Calvin was indeed on his way into the world. It was week 34.

We desperately needed to get to Boston, but because of the weather all of the Medevac helicopters had been grounded. Our local hospital did not have a Neonatal Intensive Care Unit (NICU), so they loaded me into an ambulance and we headed south to the Maine Medical Center.

The complicated and risky situation with Calvin made me fearful of having him delivered in Maine. I was convinced that they weren’t equipped to handle the complex problems that might arise. Boston, they told us, was not an option via ambulance because of the danger of going into hard labor en route. There was no alternative but to have Calvin delivered right where I was.

Unfortunately, donor platelets were not available. Thus, I endured a two-hour pheresis; my blood was removed, put through a centrifuge to extract my platelets then returned to my body. My platelets would be available to Calvin after birth in case he had a low count. After the pheresis was complete I had too few platelets to receive an epidural, which meant I had to undergo the cesarean given general anesthesia. Since I would be unconscious the surgeon refused to allow Michael to accompany me. Sadly, neither Michael nor I would witness the birth of our only child.

I kissed Michael goodbye and left him alone in the room as they wheeled me to the cold O.R. and prepared me for surgery. As I rolled down the stark hall it was eerie to wonder if I would ever wake up and see his face again.

Some time later one of the doctors laid our tiny swaddled babe in Michael’s arms. He was scared to be holding Calvin, who was not quite five pounds and in a fragile state. Michael wasn’t sure if Calvin was breathing well so before long they whisked our newborn preemie to the NICU. Thankfully, Calvin had ample platelets, though the three of us were to face a myriad of other serious problems in the days and weeks to follow.

photo by Michael Kolster



11.06.2010

early days - part one

When pregnant with Calvin I was forty, so I wanted to do everything right. I quit my demanding job, took walks with our dog twice a day and swam a mile five times a week. All foods tasted great so I got excellent nutrition, ample rest and relaxation. It felt wonderful to be pregnant.

Michael and I took a class in hypnobirthing. We wanted to have the same calm, drug-free birth experience that some of our friends had had. Every day we practiced our script of positive words, relaxing images and soothing music meant to melt away stress and to prepare my body to do what nature had intended it to do.

The amniocentesis was unremarkable. The various sonograms were fine, save for a few minor issues that were expected to resolve. A follow-up sonogram was scheduled two and a half months later at week 32.

At that appointment we were sickened to learn that the lateral ventricles in Calvin’s brain were enlarged. The doctor said, “this is something that you need to worry about, it can affect I.Q. Come back in four weeks.” We were incredulous at her frigidity as we both broke down in tears. But her choice of words incited anger and I quickly channeled my fury into action.

Within days we were in a Boston hospital enrolled in a study of ventriculomegaly—the problem with Calvin’s brain. We completed a battery of tests including blood screenings, sonograms and a fetal MRI. The radiologists and neurologists believed they saw evidence of intra-ventricular and subdural hemorrhages. This may have caused a backup of cerebral spinal fluid, they told us, that consequently distended his ventricles thus thinning the surrounding white matter. The causal theory at the time was that Michael and I had a platelet incompatibility which triggered my antibodies to attack Calvin’s platelets giving rise to a bleed in his brain.

So, at just 33 weeks gestation, our baby, whose brain was in a fragile state, was going to have to be delivered early to avoid further trauma. Present during the cesarean we were to have the obstetric surgeon, two pediatric neurologists, a neurosurgeon in case a shunt was needed, donor platelets for Calvin, and two neonatologists. To ensure his lungs would be ready and working they decided it best to deliver in week 35. Until then all we could do was sit and wait.

four days before Calvin was born photo by Michael Kolster


11.05.2010

SUDEP

Ever heard of SUDEP? It stands for Sudden Death in Epilepsy. It is similar to SIDS in that it is unclear as to the actual cause of death.

For a person like Calvin who has poorly controlled seizures, especially grand mal seizures, the risk of SUDEP is one in 100 over one year. Other risk factors for Calvin include his nocturnal seizures, his developmental delays and his onset of epilepsy at a young age.

SUDEP is not well understood, although current research indicates it may be related to heart rhythm problems and/or respiratory problems during a seizure. So although we listen to a baby monitor at night and can hear Calvin's grand mal seizures it is possible we may not hear a problem related to SUDEP. The fact that Calvin's seizure medicine can cause respiratory suppression is an additional risk.

Knowing this about my son's condition has made me acutely aware of his mortality. I still feel like a new mother who repeatedly checks in on her infant to see if he is breathing, which I do every night, several times. And though I dread Calvin being suddenly whisked away from me, in turn I very consciously relish each minute that we have together. I lavish him with caresses, tickles, hugs and kisses. Mornings we linger in bed and he puts his little arms around my neck, pulls me close and squeals with delight. These tender moments are pure sublime and allow me, if just for a time, to forget the rest.

photo by Michael kolster





11.04.2010

nightmares

The other morning I was shocked awake, sweating and in a panic. In my dream, while my back was turned, Calvin had slid off of a table and wedged himself between the table and the couch. I hadn’t noticed at first, since he was silent. I turned around to realize what had happened; Calvin was being strangled with some sort of strap on the back of the couch. He was suspended, his face the color of blueberries, his eyes deadened as bubbles gurgled from his lips. This was no dream, this was a nightmare—a recurring one—and, like in all the others, he started to seize. I woke myself straining, but failing, to utter the words, “someone call 911.”

Of course, I was relieved that it was only a dream, but the truth of the matter is that the dreams are a shadow of my reality.  When your child has a seizure it is distressing and heartbreaking. You learn to handle them better over time but you never get used to them. The feelings of helplessness and anguish never diminish. Hopefully, one day, Calvin's seizures will stop, but I will probably continue to be plagued by the nightmares.

11.03.2010

to my peeps

If you are reading this I’d say you are quite probably a remarkable individual, at least to me. Since Calvin was born I have encountered, or re-encountered, some incredible people. You know who you are; you are doctors, nurses, therapists, authors, teachers, dietitians, counselors, baristas, mothers and fathers, grandparents, nieces, nephews, cousins, third cousins and their kin, grocers, chefs, professors, EMTs, children, artists, musicians, students and former students, producers, new friends and old friends, shop owners, case managers, radio hosts, in-laws, phlebotomists, epilepsy advocates and founders, servers, deans, presidents, flight attendants, cooks, contractors, athletes, restauranteurs, siblings, caseworkers, ed-techs, contractors, recruiters, realtors, designers, managers, interns, security, dog owners, war heroes, department coordinators, pharmacists, technicians, alumni, entrepreneurs, directors, former teachers, actors, behaviorists, farmers, bartenders, coaches, caretakers, retirees, fishermen, clergy, swimmers, writers, gardeners, motorcyclists, lawyers, neighbors and former neighbors, salespeople, curators, quilters, kin, husband, movers and shakers.

You are all an integral part of my experience raising Calvin. Some of you I may never have met or sought out if it were not for him. Like Calvin, you have enriched my life beyond imagination. You have all helped shape me into the person I am.

It is because of your love and support that I continue to survive my grief. It is due to your friendship that I haven't been beaten down. Your good humor, sharp minds, warm hearts and encouragement have kept me going even in the face of fear and darkness. But most significantly, the fact that you listen and are genuinely concerned is what energizes and inspires me to tell my story on behalf of Calvin.

So with this, I say thanks to my peeps. Keep on keepin' on.



11.02.2010

cut-and-dried

When it comes to treating intractable epilepsy nothing is cut-and-dried. Calvin, who is just six and only 38 pounds, has already tried seven anti-convulsant medications—as many as four at once. Only one of those drugs, Clobazam, a benzodiazepine related to Valium, has had any obvious benefit. But in October Calvin’s seizures—which each last three agonizing minutes—increased, so we were faced with a difficult decision yet again: Risk maintaining the status quo with continued, regular seizures or risk increasing the drug and its side effects. Either way Calvin loses.

Like all seizure medicines Clobazam is a cognitive depressant, and while this particular medicine has impacted Calvin’s seizures it can adversely affect language, learning, concentration and memory. It can cause poor coordination, sleep apnea, restlessness and other long-term cognitive and behavioral trouble including addiction. So while the drug might reduce his seizures it likely also robs him further of chances for development. As it is, Calvin’s development has very nearly come to a plateau since he was diagnosed with epilepsy over four years ago.

After much deliberation we opted to increase Calvin’s medicine with the hope that his seizures will stop as a result. With any luck a reprieve will allow his brain to heal which in turn might help his development. Without a cure, though, our precious boy will likely need to remain on risky drug treatment and may never realize his full potential. What is cut-and-dried is that we need a cure. Without it we all lose.

photo by Michael Kolster

11.01.2010

the stigma of seizures

Did you know that November is epilepsy awareness month? I wager not. Why is epilepsy still such an obscure disorder? Why doesn’t Epilepsy boast a major celebrity like Michael J. Fox does for Parkinson's? Why, though it kills as many annually as breast cancer, has it not inspired a massive campaign, even as thousands of our children with epilepsy die each year. I’ll tell you why: Epilepsy is still stigmatized, shamed, misunderstood and feared.

Although considered the “sacred disease” by the ancient Greeks, in many primitive societies epilepsy was believed to be associated with sin and demonic possession and ancient Romans thought it was contagious. People with epilepsy were feared and cast out of their communities or punished for their seizures. Seizures were often considered bad omens. There are references in the New Testament to epilepsy as a form of madness, and the notion of people with epilepsy as “lunatic” held widespread currency throughout the mediaeval period.

By the late 1600s the notion of contagion gained fashion. People with epilepsy were sometimes incarcerated in mental hospitals. They were kept separate from the mentally ill to protect their fellow prisoners from "catching" epilepsy.

As recently as the early 1900s, King George V and the British royal family kept the youngest son, John, out of the public eye because of his epilepsy. When he died in 1919 at the age of 13, his existence was almost unknown.

Further dimensions of the stigma of epilepsy are disruptiveness, aesthetic aspects, peril and origin. Most people have not seen a seizure although those observing them may stand by powerlessly as “the terrified watcher.” Depending on their specific manifestations, seizures may also be aesthetically unpleasant to observers. Moreover, the issue of peril is echoed in old ideas of epilepsy as contagious. All of these aspects, plus the legacy of the old ideas about epilepsy as the product of malign forces or sinful behavior, can result in the shame that is often associated with the disorder: It might be thought that people with epilepsy are somehow morally culpable for their condition. Even now, adults with epilepsy, children with epilepsy and their parents are often ashamed of their condition, keep it secret or withdraw from society.

Each of us has the ability to change all of this for the millions of people who suffer from seizure disorders, for their families, for their friends and for society. We can promote education, awareness, understanding, empathy and advocacy. It just takes sharing a simple narrative to dispel the myths; start by telling one story at a time.




Sources:
Epilepsy: A Comprehensive Textbook 2nd Edition © 2008 Lippincott Williams & Wilkins
A history of stigma and superstition Baylor College of Medicine