in case you didn't know

Epilepsy can kill. It kills our children, our parents, our grandparents and our siblings. It is not a benign disorder for which you take a pill and everything is okay.

Epilepsy affects over three million Americans of all ages, as many as 300,000 of whom are children under fifteen.
Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined.

About 200,000 new cases of epilepsy occur each year and it is estimated that up to 50,000 people will die every year from epilepsy or seizure-related causes, such as drowning. These numbers are nearly identical to breast cancer and yet epilepsy is still an obscure disorder to most people. Epilepsy is stigmatized, misunderstood, feared, overlooked and grossly under-funded.

Those who have epilepsy and are lucky enough to have their seizures controlled by medication suffer drug side effects which can be debilitating and sometimes lethal. Side effects include dizziness, headache, nausea, poor coordination, visual disturbances, trouble with balance and gait, insomnia, drowsiness, confusion, abnormal thinking, fatigue, hyperactivity, agitation, aggression, depression and suicidal ideation, just to name a fraction.

Those who don't benefit from medication risk brain damage, cognitive decline, hospitalization, exorbitant medical bills and sudden death.

Quick facts:

• Epilepsy affects 65 million people worldwide.
• Epilepsy affects over three million Americans of all ages, just over one in 100 people. Over 300,000 school children through age 15 have epilepsy. Almost 500 new cases of epilepsy are diagnosed every day in the United States. 
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• One in twenty-six Americans will develop epilepsy at some point in their lifetime. 
• Epilepsy can develop at any age and can be a result of genetics, stroke, head injury, and many other factors.
• In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
• The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal. 
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents. 
• The mortality rate among people with epilepsy is two to three times higher than the general population, and the risk of sudden death is twenty-four times greater. 
• Recurring seizures are also a burden for those living with brain tumors and other disorders such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, stroke, multiple sclerosis, tuberous sclerosis, and a variety of genetic syndromes.
• There is a strong association between epilepsy and depression: more than one of every three persons with epilepsy will also be affected by depression, and people with a history of depression have a higher risk of developing epilepsy.
• Historically, epilepsy research has been grossly under-funded. Federal dollars spent on research pale in comparison to those spent on other diseases, many of which affect fewer people than epilepsy.
• For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence. 
• SUDEP: SUDDEN UNEXPECTED DEATH IN EPILEPSY FAQs

David Beauchard, illustration from his graphic novel, Epileptic

voice of the epilepsies

Very proud and appreciative of my friends Matt Webb and Tiffany Webb who worked so hard on making this film about such an important topic, and to my buddy Jim Abrahams (of Airport! fame) for making it possible.

The film is a poignant exploration of one family's struggle with the hardships of epilepsy and disability. Watching it as Calvin recovered from a partial complex seizure this morning, I wept seeing Tracy and Savannah, who I had the pleasure of lunching with while in San Diego years ago, grapple with the shitshow that is mother-effing epilepsy.

I am so grateful to have been able to help fund its making, and thankful to many of my friends who also donated to the project.

Please consider buying or renting the film on Vimeo.


Voice of the Epilepsies from Tiffany Webb on Vimeo.

back to the classroom

The students seemed to hold their breaths as I cupped my hands over my face to hide the tears. When I regained my composure, I apologized to the class, and the young man to my left reached out his hand and gently said, "It's okay."

For the third year in a row my friend Hadley invited me to speak to her neurobiology class, a group of thirty college students, many of them majoring in premed. She’d asked me to come talk about epilepsy and about Calvin and to show the students an aspect of neurology other than synapses, neurons and cells. I sat off to the side in the Shannon room of Hubbard Hall, a luxurious space with a high vaulted ceiling and a curved metal chandelier suspended overhead. Hadley and I scooted several brocade loungers and wooden chairs around brown leather sofas, facing them toward a drop-down screen where I projected photographs of my boy who had woken to a grand mal seizure just hours before.

The students filed in slowly, some of them grasping snacks and drinks. From the onset, they seemed alert and engaged as they listened to me describe Calvin’s premature birth, how his brain's lateral ventricles are enlarged, and the various theories neurologists had tossed around about why. Regrettably, I failed to mentioned those theories had since been debunked; to this day, no one knows why my son is missing a hunk of the white matter in his brain. I chronicled Calvin's protracted development, his significant visual impairments, his incontinence, his inability to grasp abstractions or to speak. Then I described his first seizure, our many trips to the ER and the PICU, my dread of ambulance sirens, Calvin’s forty-five minute seizure, my loathing of this thing called epilepsy. I spoke of the ills of anticonvulsant medications, their scores of side effects, their tendency to impede development, their affect on my son’s behavior, on his ability to walk and talk and use a spoon, their paradoxical effects such as hyperactivity and insomnia.

For an hour, I lead the students through the past twelve years, through countless seizures and EEGs, painful blood draws and patronizing docs, through woeful hospitalizations and a litany of drugs and dietary therapies. I tried my best to look into each of their spry faces and saw, sculpted in them, curiosity, sorrow, compassion, empathy and surprise.

It was when I began talking about cannabis that I broke down. When I took my hands from my face and breathed, I was able to squeak, “Cannabis saved our lives.”

I told them the astonishing story of little Charlotte and her mother Paige, who inspired me to try cannabis oil for Calvin. I praised Dave from Epsilon who held my hand while I learned to make Calvin's first oil. I commended the dispensary that supplies our amazing cannabis flower, and applauded the other parents who have helped me blaze this cannabis trail. I mentioned how, since adding a 4:00 p.m. dose of homemade THCA cannabis oil, Calvin has had only one daytime grand mal seizure in over six-hundred days; prior to that, he’d have a grand mal seizure every week or two in the early evening, often in the bath. I went on to explain that Calvin still has seizures, though the grand mals are confined to the night when he is safe in bed, and that it seemed perhaps that the new CBD oil might be helping, too. I emphasized that, since beginning cannabis, we’d been able to safely wean Calvin off of over ninety percent of his wicked benzodiazepine, clobazam, aka Onfi, without a huge uptick in seizures. Benzos, I surmised, should be avoided at nearly all costs, warning that physicians regularly prescribe them—Valium, Onfi, Xanax, Klonopin, Ambien to name a few—for anxiety, insomnia and epilepsy, playing down their downsides and risks of their use, their tendency for addiction, and the dangers of their withdrawal. Later, I added that, for the very worst epilepsy cases, they might be the only option that works.

For the last half hour of class, I fielded a variety of questions. One student wanted to know how often I give Calvin injections, and I understood that I hadn’t made it clear that the cannabis oil I give him by the syringe is oral. Another asked if we were treated differently because of Calvin’s condition, at which point I described splintered friendships, gawking strangers and conceited physicians, all of who, luckily for us, have been the exception not the rule. Her question reminded me of the things people have said like, everything happens for a reason, and I expressed to the class my resentment that someone would believe Calvin was designed to suffer just to serve some unworthy purpose. I went on to endorse advocacy, not just for ourselves or our children, but for other marginalized groups, suggesting that the best anyone can do as doctors or as people is to listen and validate, and if someone speaks of hurt or injustice, we should trust they speak the truth and champion their cause.

Near the end (or perhaps after my talk was over, I can't remember!) one student asked if I knew what the long-term consequences were for using cannabis. I said that I didn’t, but that I’d read that THC might harm the developing brain. I countered by saying that all anticonvulsant pharmaceutical drugs are sedatives that slow the brain and, in turn, can hinder development, and that my guess is that pharmaceutical drugs have done more to halt my son's progression than the seizures themselves. I scorned the medical community’s skepticism of cannabis, the complaints of the lack of randomized double-blind placebo-controlled studies to prove cannaibis’ safety and efficacy, the fear of cannabis’ psychotropic effects.

“All anticonvulsants can have psychotropic effects and can affect development,” I said, scoffing at the double-standard to which cannabis is often held, and adding that many anticonvulsants are not studied on children, yet neurologists prescribe them nonetheless.

The same student then asked, if I knew then what I know now, what might I have done for Calvin's epilepsy. Without hesitation, I told her I'd have tried cannabis first, before any pharmaceutical drug, and that I believed it should be a first-line therapy instead of a last resort.

At some point, I mentioned the hypocrisy of the federal government, citing its decades-old medical marijuana program, and its patent #6630507 on certain cannabinoids as neuroprotectants, both which fly in the face of its current status as a Schedule I drug, which asserts that cannabis is as harmful as heroin and possesses no medicinal properties.

I ended with some statistics, how as many as 50,000 Americans die every year from epilepsy or related causes such as drowning, how one in twenty-six people will be diagnosed with epilepsy at some point in their lives and how, even so, epilepsy gets little funding because of its long history of stigma.

When class was over we applauded each other and I invited them to read and share my blog. A handful of students lingered to ask me a few more questions. As they huddled in, I felt their warmth, intellect and genuine interest, and wished I had a child like them. As the stragglers exited, the carpeted room fell silent. I closed my laptop and was left with images of my adorable, struggling, seizing, trainwreck-of-a-kid, but grateful for how loving he is, then I took a lesson from the student who had sat to my left when I cried, and tried telling myself, it's okay.

day fourteen

At four o'clock I heard him gasp.

"Here it is!" I called to Michael, whipping off the covers to get to my boy.

I grabbed the syringe of concentrated THC cannabis oil that I'd brought upstairs the night before, in expectation of this nighttime seizure, then I squeezed the oil under his bottom lip and rubbed it into his gums. Michael said within ten seconds the spasms stopped.

After a few minutes Calvin was asleep, his tummy grumbling and his body shivering in the wake of the fit. But by four-thirty his body had calmed and he was breathing deep and slow, my arm resting on his hip.

A year ago Calvin had a seizure as we were leaving to set up for our annual CURE benefit, which we are hosting this coming Saturday. For years he had them exclusively between five o’clock and six-thirty in the evening, hardly ever in his sleep. Since starting Calvin on a homemade THCA cannabis oil a little over a year ago, Calvin has not had a daytime tonic-clonic (grand mal) seizure for almost seven months even though we’ve reduced his benzodiazepine by seventy percent.

Maine Health and Human Services once tried to characterize Calvin’s condition as stable. We went to a hearing hoping to educate them, telling them that there is nothing stable about epilepsy and that, even though Calvin hadn’t been to the emergency room in a long time, there was no telling when he might.

Just last month we spent twelve hours in the emergency room watching Calvin seize and be pumped with four powerful sedative medications meant to make them stop. If they hadn’t stopped when they did, we would have been transported to the Maine Medical Center where they’d have given him an IV of Depakote, a drug that when he was two began wreaking havoc with his liver, and if that didn’t work he’d likely have been put into a medically induced coma, from which some kids never return.

Today is Epilepsy Awareness Day. You should know that epilepsy is prevalent: one in twenty-six of us will be diagnosed with epilepsy at some point in our lives. You should know that epilepsy can be lethal: it is estimated that fifty-thousand Americans with epilepsy will die this year from seizures or related causes such as drowning. You should know that epilepsy can be elusive: over thirty-percent of people with epilepsy continue to have seizures despite the medicines they take. You should know that epilepsy is stigmatized: nearly one in one-hundred people have epilepsy, though many still choose to hide it for fear of being ridiculed or victimized. You should know that epilepsy is chronic: there is no cure, so its sufferers must live their lives taking powerful medications that can cause horrible side effects, some of which can be lethal. You should know that epilepsy can harm development: repeated seizures and drug side effects can impede development and cause irreversible cognitive delay. You should know that epilepsy can be painful: seizures can result in serious head injuries, broken noses, lacerations, broken bones and burns. You should know that seizures can feel scary: seizures can cause dreadful hallucinations including the fear of dying.

Calvin bounced back okay from his seizure today, likely because of the cannabis oil. But there is no doubt in my mind he's in for more and, without a cure, my little boy may suffer them as long as he is alive.

Please give what you can, if you can, to CURE epilepsy at Calvin’s Cure.

The video below may be difficult to watch. If you cannot access it here, view it on You Tube here.

friday faves - a single voice

It is a small thing—perhaps seemingly insignificant to someone who might think that a single voice doesn’t matter—the simple telling of a story. Well it does matter. A solitary voice with a compelling story or message, becomes two, becomes four, becomes eight and blossoms, exponentially, into a tapestry of resonant voices, a critical mass—a movement.

I’ve seen it happen. A mother of a child might be brought to tears by the challenges of her daughter, her son, and so she shares that story with friends. A father might read about an incidental moment in time that reminded him of his childhood, and so he passes the story on. A woman might linger on words that made her think of her father or mother—or perhaps reflect on being a parent—then goes on to share that story with siblings and friends. A parent, a student, a friend, an acquaintance, might be reminded of the simple joys and pleasures in life that they were taking for granted, and be moved to use their voice to share that message with loved ones. Or perhaps a harrowing story of a little boy suffering countless seizures makes someone realize how bad, prevalent and lethal epilepsy is, having never before been aware, and that person shares the story with everyone they know.

Your voice is a single voice, it’s true, but it can become a million strong, three million strong, three hundred million strong, if you simply share a story, pass on a message.

In the spirit of epilepsy awareness month, November, I’m asking a small favor. Next time you read a post on Calvin’s Story, if it moves you, makes you reflect or reminisce, laugh or cry, please share it with others. It’s a very worthy cause. Your voice, whether you know it or not, will be helping to find a cure for epilepsy, this devastatingly obscure disorder that afflicts and kills more people than breast cancer. Didn’t know that? There’s one good reason that Calvin and I need your voice. We need to find a cure. He can't do it by himself—needs a leg up—and you can give it to him, and to millions of others and their families.

So, take that one, simple step that you might have considered before now, which is to share Calvin's Story. Those who have done so already have sparked a critical mass for epilepsy awareness. Doing so means the world to me, because—like many of you might imagine—so does Calvin.

Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

the questionable journalism of gregg doyel or gettin' cheeky

After Minnesota's college football coach, Jerry Kill, suffered a seizure on the sideline during last Saturday's game, several journalists wrote about it. None of the authors of the articles that I have read seem to understand much about epilepsy. Sadly—and though I am angry—I am not surprised.

The article that this excerpt was taken from, asking whether (suggesting that) coach Kill should resign—ostensibly so that fans won't have to risk seeing a seizure or death from a seizure on the sidelines—was written, under what I see as the guise of sympathy, by Gregg Doyel of CBS Sports. He says:

But make no mistake about this, too: Jerry Kill's epilepsy is a major concern—and not just for Jerry Kill.

There will be people, maybe even most people who read this story, who will fall back on the default position that Kill is a grown man; if he wants to risk dying on the sideline—doing what he loves—that's his choice.

And you know what? In a vacuum, that's 100 percent correct. If Jerry Kill is OK with the risk to himself, who are any of us to tell him he's wrong? That's not our business.

But this issue, and these seizures, aren't happening in a vacuum. They're happening on game day, often right there on the sideline. This is an issue that's bigger than Jerry Kill and the personal risks he's willing to assume. What about the risks everyone else assumes? What if he has a fatal seizure during a game, in full view of the stadium?

That's our business.

I was so angered by what Doyel wrote and by his uninformed, discriminatory and back-assward opinion about epilepsy's impact on society, that I posted an impassioned comment that may perhaps have been better tempered by pausing before hitting the send button:

Mr. Doyel, What risks are you talking about, you ignoramus? Your journalism is so irresponsible it is shameful. And your readers are fairly uninformed about epilepsy, too. The fact that epilepsy affects nearly 3 million Americans (1 in 100), that 1 in 26 will be diagnosed with the disorder at some point in their lifetime, that 50,000 people die each year from epilepsy and related causes such as drowning and head injuries—which is more than die of breast cancer each year—the fact that at least 30% of people with epilepsy do not have their seizures controlled despite managing their condition by taking medications, that those who are lucky enough to have seizure control live a life tethered to anticonvulsant drugs and their heinous side effects, has nothing to do with whether Kill should resign, and has has everything to do with educating the public about epilepsy. The risk to the public having to see a seizure on the sidelines, even a fatal one, is nothing more than ZERO. NO RISK. And until people start to understand the disorder, its stigma, its pervasiveness, its paltry lack of funding, the rest of us will have to risk reading reckless journalism such as yours.

And though I am not proud for having called him an ignoramus, I feel as though I had to set the record straight with regard to his absurd notion of what he calls risk.

Revisiting the article today, I was pleased to see a flood of other comments by like-minded folks chastising Mr. Doyel for the offensive, small-mindedness of his commentary. But Doyel, in what appears as either cowardice, humiliation or pure and simply apathy, chose to reply to but a few comments, in one of which he says:

People have the right to work, absolutely. But to work ANY job? I don't know. Some jobs require, I don't know ... sensitivity?

To which I remarked:

yes, some jobs require sensitivity, of which you CLEARLY have none, nor do you have your facts straight. come on, dude.

I don't expect to hear back from Mr. Doyel, nor am I interested in listening to him stand his ground on a subject about which he is clearly, and comfortably, in the dark. Really. I'm thinkin' Neanderthal.

Gregg Doyel wielding small and primitive tools

tolerance

The first time I understood tolerance, of the technical kind, was when I learned the craft of designing and producing clothing. Tolerance, in the manufacturing world, is the allowable variance of any given product specification. A disparity beyond the tolerance (for example, an inseam that is too long or too short) is said to be non-compliant and can be rejected by the wholesaler.

Shortly after Calvin began taking drugs for his epilepsy, I learned there are also tolerances in the pharmaceutical world, which is a scary thought at best. This accounts for why some people with sensitive systems or fragile seizure thresholds like Calvin may not do well using generic forms of drugs compared with the brand name versions.

Recently, I faced this problem once again when I picked up Calvin’s synthetic thyroid medication from the pharmacy. I’ve made a habit of opening all bottles before leaving the pharmacy to make sure they’ve given me the correct pills since I’ve learned that this isn’t always the case. This time the pills, though they appeared the same soft lavender color, were a different shape. I asked why, and the pharmacist told me that a generic version had been substituted because the brand name pills were back ordered. She confirmed my fear about the tolerance, so I asked her if there was any other option. She suggested we might try a different brand name drug. At my request she called Calvin’s endocrinologist and pediatrician and the prescription was changed to an alternate brand name drug, ostensibly identical to the one he’s been taking for eight years. I remain dubious.

My fear in using the generic is multifaceted. First, Calvin is enjoying a long seizure-free stint of over thirty days. Calvin’s thyroid levels have been stable for years on the same dose of synthetic thyroid medication and I hate to upset this balance because who knows how that might translate in his body, in his brain. Also, changing drugs adds yet another variable to the conundrum of Calvin’s physical and behavioral symptoms and general well-being, which are difficult to ascertain, making them nearly impossible to assuage.

And, so, with no other acceptable alternatives, we will begin using the new drug in a few days, to be followed up with blood work in the wake of the change to ensure Calvin’s thyroid levels remain within the normal range. Cross your fingers and knock on wood.

Tolerance? When it comes to these drugs that I have to give my kid, I don’t have much.

disparity

According to the CDC, as many as three million Americans and their families suffer from epilepsy. One in twenty-six will be diagnosed with epilepsy at some point in their life. Chronic childhood epilepsy can result in severe developmental deficits due to uncontrolled seizures and drug side effects. More Americans—including our children—die every year from epilepsy than from breast cancer. These are just a few of epilepsy's heinous statistics.

Epilepsy affects three times the number of people that have Parkinson's disease (nearly all of whom are adults) yet annual NIH funding for epilepsy research does not reflect that discrepancy.

The disparity illustrated in the colored graphs below is indefensible, and is likely due to a variety of factors including epilepsy's long and recent stigma, its myths and misconceptions, its lack of a celebrity advocate, and its lack of general advocacy due to discrimination, marginalization and ridicule that epilepsy sufferers and their families fear.

Please help level the playing field in any way you can. Share this story and/or give to CURE epilepsy at: http://www.calvinscure.com

be aware and share (video)

Sitting on the plane home from San Diego today—next to a woman with epilepsy—I am reminded that it is international epilepsy awareness day. Awareness is the first step towards funding for critical research. Epilepsy is not a benign condition where you take a pill and everything is okay. Three million Americans—many of them children like Calvin—and their families suffer from epilepsy. One in twenty-six Americans will be diagnosed with epilepsy within their lifetime. Statistics for the rest of the world vary with the most numerous and often severe cases existing in developing nations where treatment is difficult and costly to obtain.

This video may be difficult for some to watch, though important for understanding the true nature of this heinous, pervasive, misunderstood, neglected disorder.

Ask yourself, what if this were my child?

Please share.

little trooper

All of my favorite jeans have worn through in the knees. The tattered holes are not intentional, but rather the product of countless months teaching my son Calvin to crawl since he couldn’t do it on his own. The lesson was arduous, both of us down on all fours as I supported his torso with one hand and with the other moved each limb in sequence—right arm, left leg, left arm, right leg, and so on. We practiced hours each day from the moment when most kids learn to walk until he was just over two, at which time he was able to creep a few feet on his own.

Calvin was born six weeks prematurely with significant neurological deficits of unknown origin. Since before birth he has suffered the absence of a large portion of the white matter in his brain and, as a result, cerebral palsy, serious ocular and cerebral visual impairments, global hypotonia, hypothyroidism, slow gastric emptying and pervasive developmental delays.

Shortly after Calvin turned two he was diagnosed with epilepsy, which at the time I believed was a benign disorder for which you take a pill and everything is okay. I had no idea that it would eclipse all other adversity we had yet encountered. Calvin's first seizure was a four-minute grand mal seizure. He choked and stiffened, his face turned ashen-grey then blue and, with eyes bulging, he began to convulse. In a panic I called 911 and he was taken by ambulance to the emergency room. That was the first of innumerable visits there and to the NICU, the first of hundreds of seizures, the first of several intubations, of scores of drugs, dietary therapies, nauseating side effects and countless missed milestones.

Even with powerful medication, Calvin continued to suffer seizures that came in large clusters and at times developed into status epilepticus, a prolonged seizure that can often lead to death. During one forty-five minute seizure when he did not respond to a bevy of emergency medication, we were left helpless at his side, terrified for his life and powerless to do anything to help him.

The medicines cause horrible side effects, many of which Calvin already suffers as a result of his neurological condition. The drugs can also have lethal side effects leaving us to wonder if the treatment might be causing as much damage and risk as the epilepsy itself. None of this he understands. Sadly, Calvin cannot tell us what is hurting. Though he is nine, he cannot speak, cannot walk without assistance and remains in diapers. I have no doubt that things would be different if it were not for the epilepsy.

But Calvin is a little trooper. After each attack he has bounced back, at least part way. His tenacity is formidable. Despite this battle we wage, Calvin has enriched our lives beyond measure. He has taught us to delight in simple things, to have patience and to take nothing for granted. It is because of Calvin that we persevere.

Epilepsy affects 3 million Americans and their families, about 1 in 100 people. One in 26 Americans will be diagnosed with epilepsy at some point in their lifetimes.

Epilepsy kills 50,000 American’s annually—more than die from breast cancer—including children. Even so, it remains a most obscure, stigmatized, underestimated, misunderstood and grossly under-funded disorder.

Epilepsy is the second most common neurological condition affecting more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.

Over a third of people with epilepsy do not have their seizures fully controlled with medication.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s disease enjoys more than four times the amount of funding from Pharma, nearly three times the government funding and at least ten times the funding from private entities as compared with epilepsy.

People with epilepsy suffer debilitating, sometimes lethal, seizures and/or heinous side effects from medication and most must remain on these drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions.

The only hope to end this suffering is a cure. http://www.calvinscure.com

Calvin at 18 months, 6 months before actively crawling

brave the gale

Today, the day of Calvin's birthday party—our 5th annual CURE epilepsy benefit—we woke up to at least two feet of snow. Our doors were blocked by drifts and Rudy practically drown in one that was well up past his nose. The storm is still blowing but we are committed to partying tonight, hoping that the weatherman is right and the storm will, for the most part, blow over by early evening.

I called Nels the donut man who had spent the wee hours of the morning crafting custard and jelly-filled donut holes for us to pick up as soon as Michael digs us out. My friend Eloise went into her closed restaurant yesterday to fry up two huge bags of tortilla chips, smash up a gallon's worth of avocados for guacamole and mix up a vat of salsa. Several other restaurateurs and bakers are going out of their way to make pizzas and chicken salads and quiches and terrines and spanakopitas and pates and who knows what else for this evening's event. We've got a smoked salmon fillet, shrimp platters, fruit platters, veggie platters and two delicious cakes plus gobs of beer and wine, live music and a funky play list. Only three guests, out of about 120, have said that they can''t make it. I'm optimistic. It runs in my blood.

We can't postpone and we don't want to cancel. So, amidst one of the worst storms in a century, one that the weather channels have so sensationally tagged as "crippling," we'll be getting down with our bad selves in our suits, sports jackets, cocktail dresses, other fun getups and snow boots. It'll be a Mainer's quintessential party and one to remember. And, like Calvin has done for his entire life, we will persevere, we will struggle toward the goal, we will fight the storm, brave the gale and have one hell of a good time tonight.

Join us in spirit by donating to CURE epilepsy: http://www.calvinscure.com

epilepsy's scourge

Before I had Calvin I thought that epilepsy was a benign disorder where you take a pill and everything is okay. That myth couldn't be further from the truth.

Epilepsy is as prevalent as, and more lethal than, breast cancer, and tragically it often plagues children. Even so, and because of its long and recent history of fear, shame and stigma, it remains an obscure, underestimated, misunderstood, stigmatized and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts about one in one hundred Americans. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, and its incidence is on the rise. One in twenty-six Americans will be diagnosed with epilepsy at some point in their lifetime.

The mortality rate of people with epilepsy is two to three times higher than the general population. The risk of accidental death is 24 times greater. Ten percent of people who die from epilepsy and related causes die from SUDEP: Sudden Unexplained Death in Epilepsy, which is not completely understood but is thought to occur as the result of cardiac arrest or suffocation during a prolonged nocturnal seizure. Our son Calvin is in one of the highest risk categories for succumbing to SUDEP.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease, yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government's funding and at least ten times the funding from private entities as compared with epilepsy. People with epilepsy, and parents of children with epilepsy, often hide their affliction for fear of discrimination, resulting in a colossal insufficiency of advocates.

In as many as 40% of cases, seizures are not fully controlled with medication. But even those who are fortunate to be seizure free on drugs still suffer heinous, often debilitating side effects from medications and must remain on those drugs for years, if not for their entire lives.

Only one quarter of epilepsy funding targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly—miserably—medications are no more than band-aids, which mask the symptoms but do nothing to solve the root cause while enducing consequences of their own.

Give what you can to CURE epilepsy now: http://www.calvinscure.com

photo by Michael Kolster

famous folks with epilepsy

Hugo Weaving - Hugo Wallace Weaving (born 4 April 1960) is a film and stage actor, as well as a voice actor. Weaving was born in Nigeria. He spent his childhood in South Africa and then moved to the United Kingdom in his teens. He moved to Australia in 1976, where he attended Sydney's Knox Grammar School. Weaving later graduated from Australia's National Institute of Dramatic Art in 1981. When he was 13 years old, Weaving was diagnosed with epilepsy. Due to the prospect of seizures, Weaving does not drive cars. He has never married and lives with his partner Katrina Greenwood.
Vincent van Gogh - (1853 - 1890) Vincent Van Gogh was a passionate artist who strongly believed that all expressions should be expressed through colors. He was heard saying that all he ever wanted to do with his life was paint all that came to his mind. He also said that when he would be deceased he would look back at his life and cry for the paintings that he could of created. Being the loving and creative man that he was his epilepsy had once caused him to run after his friends with an open razor, he ended up cutting his own ear lobe off. He eventually shot himself "For the good of all" leaving behind all the colorful paintings he had made.
Sir Isaac Newton - (4 January 1643 - 31 March 1727) A very important scientist who is responsibe for founding the three laws of motion along with studies concerning Universal Gravitation. He studied many scientific disciplines but mainly stayed inside the field of mechanics. It is said that Newton had mainly discovered gravity by examining a falling apple, that would have been one of the major reasons for him to start his researches in the subject. Was thought by many a product of psychosis but he may just have been in his right mind.
Neil Young - (born November 12, 1945, Toronto, Ontario) A musician known for his meaningful lyrics and also a spokesman for environmental issues, Neil Young has been labeled one of the greatest guitarists of his time. When he was young his parents divorced and Neil was confronted with many diseases simultaneously. The obstacles in which he faced included Epilepsy, Polio and Diabetes which he did eventually all overcome. Since then he has been a peacekeeper through music and is ever present in the fight for justice and all that has to do with a more peaceful world.
Napoleon Bonaparte - (15 August 1769-5 May 1821) An Italian General with many victories, also later becoming 1st consul of France. He played a great role in many wars and was a shining sword of honor for all of the French. Since his youth Napoleon had always given all his efforts to rise in military grades until he finally became emperor seated on his imperial throne. Many books today claim that Napoleon Bonaparte might have suffered from epilepsy throughout his lifetime. Although many have stood up to say that there is no valid proof and that it is but a myth.
Agatha Christie - Dame Agatha Mary Clarissa, Lady Mallowan, DBE (15 September 1890 - 12 January 1976), commonly known as Agatha Christie, was an English crime fiction writer. She also wrote romance novels under the name Mary Westmacott, but is best remembered for her 80 detective novels and her successful West End theatre plays. Agatha Christie is world famous for her brilliantly crafted mysteries. During the 1920s and 1930s, she created the enduring detectives Hercule Poirot and Miss Marple. The details of Christie's personal life, however, have rarely been documented.
Charles Dickens - Charles John Huffam Dickens, FRSA (17 February 1812 - 9 June 1870), pen-name "Boz", was the foremost English novelist of the Victorian era, as well as a vigorous social campaigner. The Victorian author of such classic books as A Christmas Carol and Oliver Twist had epilepsy, as did several of the characters in his books. The medical accuracy of Dickens's descriptions of epilepsy has amazed the doctors who read him today. Through some characters in his novels, Charles Dickens recorded observations on the nature of epileptic seizures, their causes and provocation, and their consequences. Three of his main characters, Monks, Guster, and Bradley Headstone, had seizures which Dickens realistically described.
Alexander the Great - Alexander the Great (July 20, 356 BC - June 10, 323 BC), also known as Alexander III, was an ancient Greek king (basileus) of Macedon (336-323 BC). Alexander died after twelve years of constant military campaigning, possibly as a result of malaria, poisoning, typhoid fever, viral encephalitis or the consequences of alcoholism. Born in Pella, capital of Macedon, Alexander was the son of King Philip II of Macedon and of his fourth wife Olympias, an Epirote princess. Alexander the Great had epilepsy, however at during his time epilepsy was known as "the sacred disease" because of the belief that those who had seizures were possessed by evil spirits or touched by the gods and should be treated by invoking mystical powers.
Danny Glover - (Born July 22, 1947) A great actor in both Lethal Weapon with Mel Gibson and Predator 2. Danny Glover suffered dyslexia at school when he was younger and the school staff would label him retarded. Danny Glover also had epilepsy and at an appearance on the Rosie O'Donnell Show told how he had developed epilepsy at the age of 15, and in one cross-country trip with his family had experienced six seizures in a row.
Alfred Nobel - Alfred Bernhard Nobel (October 21, 1833, Stockholm, Sweden - December 10, 1896, Sanremo, Italy) was a Swedish chemist, engineer, innovator, armaments manufacturer and the inventor of dynamite. By the time of his death he held more than 350 patents and controlled factories and laboratories in 20 countries. William Gordon Lennox wrote that "Nobel was subject to migraines and convulsions from infancy." Nobel had epileptic seizures as a young child, which later made him write of convulsions and agony in a poem. The foundations of the Nobel Prize were laid in 1895 when Alfred Nobel wrote his last will, leaving much of his wealth for its establishment. Since 1901, the prize has honored men and women for outstanding achievements in physics, chemistry, medicine, literature, and for work in peace.
Michelangelo - (March 6, 1475 - February 18, 1564) The sculptor of many of the most renowned sculptures of all times. Michaelangelo was a respected renaissance man only rivaled by Leonardo Da Vinci. Striving to excel in numerous disciplines he is also responsible for the paintings inside many famous cathedrals and the construction of some of the most respected buildings. Projects such as St.Peters basilica, basilica of San Lorenzo and the Medici Chapel which will forever leave Michaelangelo and his works a legend in all history.
Leonardo Da Vinci - (April 15, 1452 - May 2, 1519) The man responsible for some of the greatest religious paintings in history Leonardo Da Vinci excelled not only in painting but in numerous other disciplines as well. He was a Tuscan polymath: architect, botanist, musician, scientist, mathematician, engineer, inventor, anatomist, painter, sculptor, and writer. His most famous work is definetely the paintings of both Mona Lisa and the Last Supper of Jesus Christ which have both been the most reproduced religious paintings of all times.
Julius Caesar - (July 13, 100 BC - March 15, 44 BC), One of the most influential men in world history, Caesar participated in the army with distinction constantly excelling in leadership skills. He had a ruthless personality and thought of himself as far superior. A perfect example of this is when Julius had gotten captured by pirates, the pirates demanded a ransom of twenty talents of gold. Julius then laughed and demanded that they ask for fifty, he then promised them that he would chase them down once freed. Which he did, raising a fleet to chase the pirates and capture them. He then crucified them under his law once he had caught up to them.
Edgar Allen Poe - (January 19, 1809 - October 7, 1849) Edgar Allen Poe is a member of the Romantic Movement, mostly as an author and literacy critic. He has written books and short stories and he is best known for his macabre and mysteries, he is the one who invented the Detective-Fiction genre. For many years people have referred his mental problems to alcohol and drug abuse but, today many believe that he was not well diagnosed. Many now believe he may have been epileptic which would sometimes explain his frequent confusion.
Aristotle - (384 BC - 322 BC) Aristotle was a Greek philosopher writing on many different subjects including zoology, biology, ethics, government, politics, physics, metaphysics, music, poetry and theater. He was also a great teacher for Alexander the Great. Aristotle was one of the first to point out that epilepsy and genius were often closely connected. He found that the seizure disorders may have the ability to increase brain activity in specific places and maybe also enhance a persons natural abilities to a certain extent.
Theodore Roosevelt - 26th President of the U.S. (October 27, 1858 - January 6, 1919) Roosevelt was a soldier , historian, explorer, naturalist, author, and Governor of New York later becoming the President of the United States at the age of 42 years old. He was well known for having a vast range of objectives and achievements, all with an energetic determination and a hard ''cowboy'' persona. He was subject to epileptic seizures, his eyesight was bad, and he also suffered from asthma, but was still a man of courage and strength appreciated by many.
Alfred the Great - (c. 849 - 26 October 899) Alfred the Great was king of the Anglo-Saxon kingdom of Wessex from 871 to 899. In his life Alfred highly valued education and wanted his kingdom to be rich with knowledge. He improved his Kingdom's law as well as it's military structure. Although Alfred had epilepsy it did not keep him from doing good for his kingdom and making one of the best books of laws of his time. He was very catholic and by the time of his death he had helped increase the quality and amount of churches and schools from all over his lands.
Bud Abbott - (October 2, 1895 - April 24, 1974) Bud Abott was an American producer, comedian and actor. Many times did he try to hide the fact that he was suffering from epilepsy. His whole life he had been subject to the disease and many times he tried to control it with alcohol. His alcoholism was getting worst as time went by and he eventually went bankrupt due to tax issues with the IRS. Short after going bankrupt Bud lost his longtime partner Lou Costello when he died from heart damage. Bud then tried to take another shot at his career with Candy Candido but was not successful. Bud Abott died of cancer on April 24, 1974 after suffering from two consecutive strokes.
Lewis Carrol - (27 January 1832 - 14 January 1898) was an English author, photographer, mathematician, Anglican clergyman and logician. He has written several renowned books and his work has inspired many modern artists. His facility in wordplay would attract not only children but also some of the elite readers. He has written books describing minor epilepsy attacks and the dream worlds that some of them may bring a person to. Like the sensation of falling in a hole and everything around getting smaller or bigger. Not hearing or seeing the same and feeling as if your entire body is changing in a fraction of a second.
Richard Burton - (November 10, 1925 - August 5, 1984) Being at one time the highest paid Hollywood actor, Richard was well known for his distinctive voice. He was crippled all his life by epilepsy and was extremely deep into alcoholism to try and prevent the seizures. Eventually this led him to manic depression but he would never go to see a doctor because he did not trust them one bit. At times he seemed to be more scared of being crazy then having epilepsy. Throughout his entire life he had never went to get diagnosed by a doctor.
George Frederick Handel - (Friday 23 February 1685 - Saturday 14 April 1759) was a German-born Baroque composer who is famous for his operas, oratorios and concerti grossi. Since the 1960s, with the revival of interest in baroque music, original instrument playing styles, and the prevalence of countertenors who could more accurately replicate castrato roles, interest has revived in Handel's Italian operas, and many have been recorded and performed onstage.
Charles V of Spain - Charles V (24 February 1500 - 21 September 1558) was ruler of the Holy Roman Empire from 1519 until his abdication in 1556 and also ruler of the Spanish realms from 1516 until 1556. Charles V suffered from epilepsy and from an enlarged lower jaw. He struggled to chew his food properly and consequently experienced bad indigestion for much of his life. also He suffered from joint pain, presumed to be gout, according to his 16th century doctors. In his retirement, he was carried around the monastery of St. Yuste in a sedan chair. He was greatly interested in clocks, instructing his servants to take them apart and reassemble them in his presence.  
Pythagoras - Pythagoras was the first man to call himself a philosopher, ''lover of wisdom'' and was the most able philosopher among the Greeks. He was know as ''the father of numbers'' and greatly contributed to mathematics. It is even said that many of his ideas had directly influenced Plato. Many of his teachings were only passed down by some of his students, none of his work had seen the day and none can be sure of exactly how wise Pythagoras was. Although he had made huge contributions to both philosophy and religion in the late 6th century BC. 
Fyodor Mikhaylovich Dostoyevsky - (1821 - 1881) - Russian writer and essayist, known for his novels Crime and Punishment and The Brothers Karamazov. Dostoyevsky had epilepsy and his first seizure occurred when he was nine years old. Epileptic seizures recurred sporadically throughout his life, and Dostoyevsky's experiences are thought to have formed the basis for his description of Prince Myshkin's epilepsy in his novel The Idiot and that of Smerdyakov in The Brothers Karamazov, among others. 
Hannibal - Carthaginian military commander and tactician, later also working in other professions, who is popularly credited as one of the finest commanders in history. He lived during a period of tension in the Mediterranean, when Rome (then the Roman Republic) established its supremacy over other great powers such as Carthage, Macedon, Syracuse, and the Seleucid empire. His most famous achievement was at the outbreak of the Second Punic War, when he marched an army, which included war elephants, from Iberia over the Pyrenees and the Alps into northern Italy.
Hector Berlioz - Louis Hector Berlioz (December 11, 1803 - March 8, 1869) was a French Romantic composer, best known for his compositions Symphonie fantastique and Grande Messe des morts (Requiem). Berlioz made great contributions to the modern orchestra with his Treatise on Instrumentation and by utilizing huge orchestral forces for his works, sometimes calling for over 1,000 performers.
James Madison - During his teens and early twenties, Madison complained of a voice impairment. This was a functional handicap that prevented his public speaking until age 30. Madison believed he would " have a short life due to the illness he believed was epilepsy.
Lord Byron - Baron Byron, of Rochdale in the County Palatine of Lancaster, is a title in the Peerage of England. It was created in 1643, by letters patent, for Sir John Byron, a Cavalier general and former Member of Parliament. Some biographies suggest that Lord Byron experienced epileptic seizures and in various passages he writes of symptoms reminiscent of epilepsy.
Louis XIII of France - (September 27, 1601 - May 14, 1643) ruled as King of France and Navarre from 1610 to 1643. Louis XIII ascended to the throne in 1610, at the age of eight and a half, upon the assassination of his father.
Margaux Hemingway - (February 16, 1955 - July 1, 1996) was an American model and film actress who appeared in several movies. She was born in Portland, Oregon, the sister of actress Mariel Hemingway and the granddaughter of writer Ernest Hemingway. She struggled with a variety of disorders in addition to alcoholism, including bulimia and epilepsy.
Martin Luther - (November 10, 1483-February 18, 1546) was a German monk, theologian, and church reformer. Luther's theology challenged the authority of the papacy by holding that the Bible is the sole source of religious authority and that all baptized Christians are a priesthood of believers. Luther had many documented illnesses, but any recurrent attacks were probably due to Meniere's disease.
Nicolo Paganini - (October 27, 1782 - May 27, 1840) was an Italian violinist, violist, guitarist, and composer. He is widely considered to be one of, if not the greatest violinist who ever lived and it is believed to he had epilepsy.
Paul I of Russia - Pavel (Paul) I Petrovich of Russia (October 1, 1754 - March 23, 1801) was the Emperor of Russia between 1796 and 1801. During his infancy, Paul was taken from the care of his mother by the Empress Elizabeth, whose ill-judged fondness allegedly injured his health. As a boy, he was reported to be intelligent and good-looking. His pugnacious facial features in later life are attributed to an attack of typhus, from which he suffered in 1771.
Peter Tchaikovsky - Russian composer of the Romantic era. Tchaikovsky, is believed to have had epilepsy. Pyotr began piano lessons at age five with a local woman, Mariya Palchikova within three years he read music as well as his teacher. Tchaikovsky died on November 6, 1893, nine days after the premiere of his Sixth Symphony, the Pathetique. His death has traditionally been attributed to cholera, most probably contracted through drinking contaminated water several days earlier.
Peter the Great - Peter I the Great or Pyotr Alexeyevich Romanov (9 June 1672 - 8 February 1725) Both Peter's hands and feet were small, and his shoulders narrow for his height; likewise, his head was also small for his tall body. Added to this were Peter's facial tics, and, judging by descriptions handed down, he may have suffered from petit mal, a form of epilepsy.
Robert Schumann - (June 8, 1810 - July 29, 1856) was a German composer, aesthete and influential music critic. He is one of the most famous Romantic composers of the 19th century.
Sir Walter Scott - (15 August 1771 - 21 September 1832) was a prolific Scottish historical novelist and poet popular throughout Europe during his time. Walter Scott survived a childhood bout of polio in 1773 that would leave him lame. In 1778 Scott returned to Edinburgh for private education to prepare him for school, he was now well able to walk and explore the city as well as the surrounding countryside. His reading included chivalric romances, poems, history and travel books.
Socrates - (470 BCE-399 BCE) was a Classical Greek philosopher. He is best known for the creation of Socratic irony and the Socratic Method, or elenchus. Socrates developed the practice of a philosophical type of pedagogy, in which the teacher asks questions of the students to elicit the best answer, and fundamental insight, on the part of the student.
Truman Capote - born Truman Streckfus Persons in New Orleans, Louisiana (30 September 1924 - 25 August 1984) was an American writer whose stories, novels, plays, and non-fiction are recognized literary classics, including the novella Breakfast at Tiffany's and In Cold Blood. Capote once said, "I don't care what anybody says about me, as long as it isn't true". John Knowles says that Capote "induced epilepsy himself by abusing his nervous system with drugs and booze" An autopsy showed Mr. Capote had an infection in his legs and signs of epilepsy, but no conclusive information was disclosed about the cause of the author's death.
Chanda Gunn - (born January 27, 1980 in Huntington Beach, California) is an American ice hockey player. She won a bronze medal at the 2006 Winter Olympics. As a female athlete with temporal lobe epilepsy, Chanda Gunn faces each day with a zest for life and the determination to live each day to its fullest. Gunn has received numerous awards, she is the first player ever to be named a finalist for both the Patty Kazmaier Award for the nation's best women's college hockey player and the Humanitarian Award for college hockey's finest citizen.
Dj Hapa - Diagnosed with epilepsy at age 17, HAPA was initially told he would not be able to attend college due to his condition. He attended UCLA on a Regents scholarship and today is the executive director of the Scratch DJ Academy.
Florence Delorez Griffith-Joyner (December 21, 1959 – September 21, 1998), also known as Flo-Jo, was an American track and field athlete. She is considered the "fastest woman of all time" based on the fact that she still holds the world record for both the 100 meters and 200 meters, both set in 1988 and never seriously challenged. She died of epilepsy in 1998 at the age of 38.

Vincent Van Gogh

cyanosis

Cyanosis: a blueish discoloration of the skin (here, the fingers, toes and lips) resulting from poor circulation or inadequate oxygenation of the blood.

Cyanosis: what happens when my son Calvin doesn't breathe for over a minute during grand mal convulsive seizures that last upwards of three minutes.

cyanosis

off to the market

The Prairie Market was a precursor to today’s Trader Joe’s, only more raw, more down home. It had the same cement floors and wide aisles, though was completely void of mothers wearing Lycra yoga pants, tank tops and hoodies. When my mother shopped there I rode dangling my feet over the edge of a low, flat metal cart, its large casters spinning and squealing around wide turns between rows of gallon milk, family sized toilet paper and endless boxes of cereal. I helped her load the cart full of Hamburger Helper, Tang, Instant Breakfast, Cheerios, Wheaties, non-fat dried milk, Potato Buds, meats, cheeses, eggs, ice cream, flour, sugar and various other items she’d add to a garden full of vegetables and fruits that my dad tended.

In sharp contrast, I almost never bring Calvin to the grocery store anymore. He’s gotten too big (too long, really) to ride in the shopping cart without snagging his shoes on the seat making it impossible to get him in or out. Besides, he has never really tolerated the grocer very well, giving in to flailing and screaming most of the time and once or twice having a seizure right then and there.

Yesterday, though, we took an outing to the health food store to pick up his latest treatment—magnesium citrate. I pulled up to the curb in front of the shop, helped him tumble out of his car seat, stand and turn to push the door shut, watching him smile at the satisfying clunk of the heavy car door. Holding one hand, my other on his harness, we walked to the shop door and pulled it open. Inside, the two women sitting at the counter greeted us. Calvin insisted, as he had all day long, on stubbornly dropping to the floor. One kind woman fetched what I was looking for and rang me up as I sat Calvin facing me on the counter. He writhed and squealed and laughed hysterically and yanked my hair and scratched my neck. As I struggled to retrieve my wallet from my backpack I explained, “Calvin has epilepsy and I think he’s due for a seizure.” I added that it wasn’t imminent—as in immediately—but that it might be on its way in the next day or so. In exchange for the receipt I handed them two of my business cards, the front sporting a photo of me and Calvin, the back of which has the blog address and my mission to promote epilepsy awareness. With Calvin’s arms wrapped tightly around my neck I quickly rattled off a few facts about epilepsy, “Epilepsy kills more people than breast cancer, yet no one knows,” then added, “and there's little advocacy since few want to admit that they have epilepsy or that their kids have it for fear of discrimination.” The women looked at me with deep concern and compassion. “Please share it with the world,” I said, and somehow I knew that they would. As Calvin and I left the shop I felt their eyes heavily upon us, even as I loaded my boy into the car and drove off.

Before heading home we had to return something at another health food store. As soon as we entered the small shop Calvin let out a piercing shriek, turned to me and “asked” to be picked up. I obliged, and simultaneously met eyes with the young woman behind the counter who looked mortified and, despite my smile, remained stunned, her narrow shoulders cinched up around her neck. My buddy Phil stepped in and finished the transaction having helped me frequently in the past and knowing, to a certain degree, Calvin’s struggles. I calmed Calvin, hugged and kissed him and reassured him we’d be leaving soon, then lifted him to the ground, held his hand and harness and helped him push the door exiting to the sidewalk. We slowly passed by a couple sitting on a bench with their infant-toddler, his chubby legs dangling over the side. Gingerly, Calvin stepped down off the curb to the car and with my hand over his we opened the door. I hefted him up and buckled him into his seat and as I got into the driver’s side I looked at the couple on the bench. They’d been watching us with big smiles on their faces. The man, tanned with a handsomely rugged stubble, looked to be forty-ish, the woman fair and blond, several years younger. The man gave me a huge thumbs-up as if to say good job. There was no pity in their eyes, only fondness, admiration and compassion. I wanted to know them, to hug them, to tell them all about Calvin. But I had already started backing out and as I drove off we waved and smiled at each other again just as tears began rolling down my face. And peeking into the rear view mirror there was Calvin, a big toothy grin on his face, biting his shoe, squealing and flapping his arms to his all-time favorite Joni Mitchell song.

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Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

nicole's epilepsy

Written by Lacey McLaughlin, Staff Writer at The Dayton Beach News Journal, April 24, 2012

PORT ORANGE, FL—Nicole Newbern doesn't remember her body convulsing as she hit the concrete outside her home.

When she woke up with a bruised and bleeding face on that January day in 2011, her boyfriend explained that she had suffered yet another grand mal seizure.

In 2008 doctors diagnosed Newbern with epilepsy—a neurological disorder that forced her to move back in with her parents and put her future career plans of becoming a nurse on hold.

That same year, Newbern suffered her first seizure a week after she completed coursework at Daytona State College to become an EMT. She was working full time as a cashier at Walmart and after suffering several seizures at work, Newbern said her employer let her go because of missed time. The seizures come with little warning and Newbern suffers an average of two-to-three minute-long seizures once a week. The disorder also causes her to have partial seizures, nonconvulsing seizures called absent seizures and hand tremors. Shortly after her diagnosis she fell into a deep depression.

"You feel a rage when everything gets taken from you," the 23-year-old Port Orange resident said. "I can't take a shower unless someone else is home. I can't drink out of a glass cup because I might have a seizure and fall on it. I couldn't have a drink on my 21st birthday because of my meds."

Tired of the stigma that's often associated with epilepsy, Newbern started a Facebook page to document her daily struggles. A photograph of her resembling a defeated boxer appears on her page. Some of her followers also took her cue, posting photos of their own post-seizure wounds: An elderly man with a black eye, a little girl with a broken collarbone, and others with busted lips or bruised faces.

"The picture shows that epilepsy is dangerous—not only in the fact that my brain is shutting down temporarily, but that my environment is dangerous all the time," Newbern said.

For people who are embarrassed about their disorder or trying to keep it a secret, she posts their questions anonymously to help them find answers about the disease. The Facebook page, "Nicole's Epilepsy," now has 1,625 followers.

"Thank you for making this page," a follower from Shreveport, La., wrote on April 13. "It makes me feel not so alone to know people go through struggles like I do every day."

Newbern said she identified with the people who were experiencing similar setbacks.

"At first I wanted to run and hide from it," she said. "A lot of people have really good questions, but they are shy and don't want to use their names. I get so many questions I can hardly keep up."

Newbern is one of 2.7 million Americans who suffer from epilepsy, according to the Epilepsy Foundation of Florida. As with 30 percent of those with the disorder, doctors have not been able to control her seizures with medical treatments. A study by the Institute of Medicine released earlier this month found that one in 26 people may develop epilepsy at some point in their life.

After accumulating more than $62,000 in medical debt and suffering from the disorder for three years, Newbern qualified for Social Security disability benefits. She can't drive or be left alone at home. Her stepfather, who works nights, stays with her during the day.

Newbern recently went through neurological testing at Shands at the University of Florida's Epilepsy Monitoring Unit in Gainesville where doctors attempted to pinpoint exactly where the seizures occur in her brain. Through the testing she was able to adjust her medication, which has helped ease her partial and absent seizures.

Art became an important outlet for Newbern to deal with her disorder. She uses her parent's garage as a studio where she paints, makes journals and sculpts. She also makes jewelry, which she sells to raise money for the Epilepsy Foundation of Florida.

On Saturday, the Epilepsy Foundation will honor Newbern for her advocacy in the epilepsy community during the Walk the Talk fundraiser at Mary McLeod Bethune Beach Park in New Smyrna Beach.

"She has done a complete 180 from the date of diagnosis to where she is now," said Epilepsy Foundation of Florida case manager Ericka Kaelin. "She is still struggling to gain seizure control but she doesn't let that get her down."

Please visit Nicole's Facebook page: https://www.facebook.com/NicolesEpilepsy
Please share Calvin's Story and help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

Nicole Newbern's wounds sustained during a seizure

SUDEP

Ever heard of SUDEP? It stands for Sudden Unexplained 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 use of more than one anticonvulsant medication, 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 in an effort to hear Calvin's grand mal seizures it is possible we may not detect a problem related to SUDEP. Regrettably, 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.

And just so you know, this ain't no April Fool's Day joke, but I sure wish it was.

Please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

epilepsy's scourge

Before I had Calvin I thought that epilepsy was a benign disorder where you take a pill and everything is okay. That myth couldn't be further from the truth.

Epilepsy is as prevalent as, and more lethal than, breast cancer and tragically it often plagues children. Even so, and because of its long and recent history of fear, shame and stigma, it remains an obscure, underestimated, misunderstood, stigmatized and grossly under-funded disorder.

Epilepsy is the second most common neurological condition and afflicts about one in one hundred Americans. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined, and its incidence is on the rise.

The mortality rate of people with epilepsy is two to three times higher than the general population. The risk of accidental death is 24 times greater. Ten percent of people who die from epilepsy and related causes die from SUDEP: Sudden Unexplained Death in Epilepsy, which is not completely understood but is thought to occur as the result of cardiac arrest or suffocation during a prolonged nocturnal seizure. Our son Calvin is in one of the highest risk categories for succumbing to SUDEP.

Epilepsy afflicts up to three times the number of Americans compared with Parkinson’s disease. Yet Parkinson’s enjoys more than four times the amount of funding from Pharma, nearly three times the government's funding and at least ten times the funding from private entities as compared with epilepsy. People with epilepsy, and parents of children with epilepsy, often hide their affliction for fear of discrimination, resulting in a colossal insufficiency of advocates.

In as many as 40% of cases seizures are not fully controlled with medication. But even those who are fortunate to be seizure free on drugs still suffer heinous, often debilitating side effects from medications and must remain on those drugs for years, if not for their entire lives.

Only one quarter of epilepsy research dollars targets finding a cure. The lion’s share goes toward developing treatments, such as medications, from which the pharmaceutical industry stands to gain billions, though sadly—miserably—medication is no more than a band-aid.

Please share Calvin's story with the world. Help level the playing field and bring us one step closer to a cure.

Share: http://www.calvinsstory.com
Give: http://www.calvinscure.com

photo by Michael Kolster