worthless words i can live without

how nice for you
one can always hope
there’s no silver bullet
i don’t care
whatever
what'd you go and do that for
don’t we all
right
what’s your problem
it’s meant to be
i’m just saying
been there done that

it'll get better
ask me if i care

i told you so
it's all good

photo by Michal Kolster

friday faves - spec of dust

It’s good to get outside of myself, out from under the piles of insurance notices, dietary protocol, doctor’s notes, lab requisitions, irrelevant school notices, away from the drawer stuffed with drug-filled childproof bottles, pill cutters, syringes, bibs, rags and sterile gloves, distance myself from diapers and wipes and rectal thermometers, pain killers, suppositories and salves. And sometimes I get that chance, even in the comfort of my own home.

I watched Felix Baumgartner drop out of the sky from 128,000 feet. A strangely unsettling vertigo washed over me as I eyeballed the rotating curvature of our blue planet that appeared more brown than anything. Viscera twisted as he spun like a top, first in one direction, then slowing before circling in the other, the sun at times glinting off of his helmet. I felt as if I were doing loop de loops on a roller coaster—exciting, unnerving, exhilarating. At the edge of my seat I squinted at the little white spec on the screen: a man tumbling over himself in a sickly Time Tunnel spiral. I knew the outcome—it’d been all over the news the day before—but still the scene was gut-wrenchingly tense. Even so, I wished I’d been able to watch it live, to feel the depth of angst, fear and white-knuckle suspense, to feel something so completely foreign in its origin. In a way I wished I were he.

The video cut to Eva, Felix’s mother, tears streaming down her face as she sat at the edge of her own seat, watching, waiting. What must this mother be thinking as she witnessed her son rip through the sky like a rocket—for a period turning grisly cartwheels—punching a hole through the sound barrier with a mortal fist sheathed in Stormtrooper white. What were the chances he might perish, dissolve into thin air or be ground into the turf like sand? I found myself paralyzed, delirious, euphoric.

After seeing—feeling—such a fantastical feat, its images gravitated to my mind like a magnet. I later sat near the bedroom window, Calvin happily mouthing his toys on the floor near my feet, his colored plastic orchestra cube blinking and playing the same music I’ve hear a million times over. Up there in space ... won’t it be nice when that’s me? I mused. Oh, how I sometimes long to be a spec of dust floating in the cosmos, oblivious, infinitely small yet simultaneously expansive. Invisible. Trivial. Perfect. I’ll be ready to go there when my time comes, I thought, lured to that edge of peacefulness—the waters of Lethe and Mnemosyne—like tides drawn to the moon.

But then I step back inside myself where there’s laundry to be folded, Calvin’s dinner to be made, a floor to be swept, dishes to unload, diapers to change and an eight-year-old mouth to spoon feed. Then I delve even deeper within thinking of my aging mom, writing my blog in my head, supporting dear friends, loving my husband, adoring my child, embracing my family. Within is where I find a self that—every day—can soar twenty-five miles high and spin, sometimes uncontrollably, at 800 miles an hour even with two feet planted firmly on the ground of this planet which is truly, mostly, azure blue.

Originally posted October 2012.

Felix Baumgartner, Red Bull Stratos 

thanksgivings and wishings

Thanksgivings:

Birds of all kinds, even roasted ones. Happy kid. Salty dog. Melted snow. Quiet streets. Stereo music. The smell of fried bacon and leeks. Hubby in the kitchen. Out-laws on their way in. Dew drops. Barbara. A decent night's sleep. Employment. Johnny-jump-up. Gatherings. Sunrise. Laughter. Fresh-baked pies. Comfort. Fire in the stove. Hugs from Calvin. Cranberry sauce and gravy. Family and friends.

Wishings:

Homes for the homeless. Food for the hungry. Jobs for the jobless. Opportunity for the oppressed. Equality. Open-mindedness. Empathy. Generosity. The end of racism, sexism, classism and bigotry. Kindness. A bird on every table. Self-sacrifice. Seizure-free children.

photographer unknown

the small world

Trapped inside today, watching cars go by, their headlights reflected in the wet street, I realize this is the start of a long hard winter spent mostly indoors since Calvin cannot manage boots or walk in the snow and ice. I am reminded of a thoughtful note recently sent to me from a friend who grew up with a disabled sister and who also has a mother with Alzheimer's. She wrote:

Waking up and keeping on are the heroic part; the tiny triumphs are the unassisted walks, the days of almost normal, the moments of surprising response. These triumphs are worth the world. There are times when one wants to scream, "how did my world get so small!" The only rescue is our sense of beauty, our sense of humanity, our love. In rare and perfect moments, the small world is profoundly moving and we don't wish for anything more. I hope you have a perfect moment with Calvin and Michael today.

I hope so too, M. I'll be reading this again and again today as the rain pushes down through bobbing boughs soaking into the green and the black of things. The windows, with their rippled glaze, will be my gems, the street my runaway river.

photo by Michael Kolster

thank you chellie

When I wrote to President Obama last week asking him to do what he can to legalize the use of medical marijuana at the federal level, I also sent similar letters to our Maine Senators Angus King and Susan Collins and to my Representative, Chellie Pingree. The letter below, which got stuck to its envelope and torn—its broken sentences which I transcribed onto the raw tear—is her response.

Thank you Chellie, for your efforts on behalf of our children. Take it all the way!

ass-kickers

Today I’m wearing my ass-kickers. Lucretia gave them to me. They’re brown leather, pointy-as-hell and studded, in a Goth sort of way, with crosses every which way having absolutely nothing to do with religion, unless there’s a religion for irreverent, foul-mouthed dragon moms who challenge the status quo, who write their president telling him about their pursuit of an illegal substance (medical marijuana) to give to their seizure-racked child, who aim to eradicate the evils of ignorance, greed, the lust for power and who simply want to make things right in the world. As you can see, I've put them to good use.

That’s right. I’m setting out to kick some major butt today with a handful of other dragon moms who have children with medically refractory epilepsy, kids who, despite being loaded full of powerful antiepileptic drugs, continue to suffer regular seizures that disrupt their development and their ability to live life feeling good and moving forward. We are meeting at an undisclosed location to talk about medicinal cannabis: medical marijuana. It is legal in our state, Maine, and approved for use to treat epilepsy. What seems to elude us thus far, however, are the following: 1) the right strain of cannabis high in cannabidiol (CBD) and low in tetrahydrocannabinol (TCH) so as to avoid the psychoactive effects; 2) accessible, trustworthy labs to test the strains for toxins and ratios; 3) laws that don’t limit the amount of medical marijuana we can possess for our sick kids; 4) laws that don’t inhibit our ability to travel out of state with our children and their meds without risk of arrest for drug trafficking; 5) understanding whether a strain high in CBD and low in THC is necessary (some argue that the non-active form of the plant with its CBDa and THCa—both in their acid form having not been heated during processing—is as safe and effective, if not more so than the active form); 6) understanding what dosing is appropriate for our children; 7) whether to grow and tincture the cannabis ourselves or whether to purchase it from another licensed caregiver (grower) or dispensary.

The fact that the FDA has classified cannabis as a schedule 1 drug (including its CBD, which is non-psychoactive) and therefore illegal at the federal level, has stymied decades of research that could have proved priceless for the use of medical marijuana to treat pediatric medically refractory epilepsy, the worst form of epilepsy due to its heinous impact on development, its path through the land mines of pharmaceuticals and their heinous side effects and its ability to kill our children. It sickens me that cannabis, with its perfect score of ZERO known deaths, has been so maligned while pharmaceuticals—legal, readily available, easily obtainable and covered by health insurance—cause tens of thousands of deaths each year.

So, watch out. Don’t mess with this chick. I’ve pulled on my ass-kickers and if you really want to get in the way of me helping—healing—my child, I suggest that you bend over.

vimpat

Vimpat is the next (tenth) anticonvulsant drug we are considering for Calvin besides medical marijuana. It sounds as troubling as all of the others he has already tried, and the chance that it—or any subsequent pharmeceutical—will stop his seizures has dwindled to almost nothing. Sadly, Calvin cannot tell us how he feels.

What you should know about Vimpat:

Do not stop taking Vimpat without first talking to a healthcare provider. Stopping Vimpat suddenly can cause serious problems. Stopping seizure medicine suddenly in a patient who has epilepsy can cause seizures that will not stop (status epilepticus).

Vimpat can cause serious side effects, including:

Like other antiepileptic drugs, Vimpat may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. 

Call a healthcare provider right away if you have any of these symptoms, especially if they are new, worse, or worry you:  
    ◦    thoughts about suicide or dying
    ◦    attempt to commit suicide
    ◦    new or worse depression
    ◦    new or worse anxiety
    ◦    feeling agitated or restless
    ◦    panic attacks
    ◦    trouble sleeping (insomnia)
    ◦    new or worse irritability
    ◦    acting aggressive, being angry or violent
    ◦    acting on dangerous impulses
    ◦    an extreme increase in activity and talking (mania)
    ◦    other unusual changes in behavior or mood
  
Vimpat may cause you to feel dizzy, have double vision, feel sleepy, or have problems with coordination and walking. Do not drive, operate heavy machinery, or do other dangerous activities until you know how Vimpat affects you.
  
Vimpat may cause you to have an irregular heartbeat or may cause you to faint. Call your healthcare provider if you have:
    ◦    fast, slow, or pounding heartbeat
    ◦    shortness of breath
    ◦    feel lightheaded
    ◦    fainted or if you feel like you are going to faint

Vimpat is a federally controlled substance (C-V) because it can be abused or lead to drug dependence. Keep your Vimpat in a safe place, to protect it from theft. Never give your Vimpat to anyone else, because it may harm them. Selling or giving away this medicine is against the law.

Before you take VIMPAT, tell your healthcare provider if you:
    ◦    have or have had depression, mood problems, or suicidal thoughts or behavior
    ◦    have heart problems
    ◦    have kidney problems
    ◦    have liver problems
    ◦    have abused prescription medicines, street drugs, or alcohol in the past
    ◦    have any other medical problems
    ◦    are pregnant or plan to become pregnant. It is not known if Vimpat can harm your unborn baby.

Vimpat may cause other serious side effects:
Vimpat may cause a serious allergic reaction that may affect your skin or other parts of your body such as your liver or blood cells. Call your healthcare provider right away if you have:
    •    a skin rash, hives
    •    fever or swollen glands that do not go away
    •    shortness of breath, swelling of the legs, yellowing of the skin or whites of the eyes, or dark urine

The most common side effects of Vimpat include:
    •    dizziness
    •    headache
    •    double vision
    •    nausea

These are not all of the possible side effects of Vimpat. For more information ask your healthcare provider or pharmacist. Tell your healthcare provider about any side effect that bothers you or that does not go away. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

readers rock my world

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks.

—Jim

My husband and I just spent the morning at my daughter's neurologist's office trying to find out why there seems to be only three states of being for my girl: having seizures, bat-shit crazy because of the meds, or a zombie because of the meds. I hate them all. I miss my pre-epilepsy daughter. And I'm sick of it. I wish you and I had other options.

—Lisa

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF.

—John

Listening and holding you close at heart ... your honesty, raw emotion and COURAGE blow me away. Wishing you moments of peace and grace.

—Sel

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening.

—Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day.
 

—Karen

I'm listening from far away and feeling. ciao

—Federica

love you dearly. I am grateful for the richness and depth you have given me.

—KIM

I had a friend who [had uncontrolled epilepsy] so I have great empathy. She "looked" normal, so she had to deal not only with the idea she was "disabled" and gave up a lot of her dreams (she'd been accepted to John Hopkins to study nursing, her lifelong dream, couldn't drive because of the nature of her disease's presentation, she couldn't hold a job) but also had to deal with people who questioned her disability (until they saw her seize.) Education helps everyone and you are one of the educators.

—Agy 

I awoke at 2 am in a terrible nightmare so I went upstairs to snuggle in Cole's bed. I still could not fall asleep so I pulled out my phone and read some of your older posts. Well, I was finally able to fall asleep and I had the sweetest dream about Calvin, in my dream he was happy and snugly and was trying to tell us that he was happy. It was so dear and I didn't want to wake up so I continued hitting the snooze button on my phone. I told the boys about my dream because they ask me regularly how Conor's friend Calvin is doing. it is very sweet. We lift you all up in prayer every single day, Cole loves to pray specifically for Calvin when he goes to bed. He couples Calvin and Conor in the same prayer, that they would both be able to walk and one day talk and just be happy with no struggles.

—Emi

Thank you to all of my readers. You give me strength and help to make my world go round.

adagio for strings

and this, for so many reasons:

friday faves - insanity

From last November.

I’d love to procure a couple of matching straitjackets, one for Calvin and one for me. I like the utilitarian look with all of those cool buckles, belts and grommets, not to mention their purpose: restraint. I envision mine in a buff Irish linen double-cloth while opting for a clean white toothy canvas for Calvin. Perhaps one day we'll transform Calvin's room into a padded cell, which we'll of course share in our mutual insanity.

Again, I wake up to the jarring sound of Calvin’s head banging against the safety panel on his bed. Though it’s padded it unleashes a sickening thump-rattle unnerving enough to jolt me out of my skin and shed bits of delicately grey-streaked brown hair that commingles nicely with Rudy’s, which happens to be everywhere. And though it’s my greatest dream to hurl the frigging baby monitor across the room and stomp on it, I can’t even turn the bloody volume down because I need to hear if Calvin has a seizure.

I repositioned him almost every hour during the night and at 4:30 a.m.—his new normal wake-up time—I've got the sleep deprived hangover of a physics student whose just pulled an all-nighter scarfing cans of Red Bull, bags of chips and hand fulls of M&M's. Finally relenting to the mind-rattling ruckus, I fetch him and bring him into bed with me. Michael is away, no doubt sleeping in late after a blissful, uninterrupted night. What with Calvin’s flailing arms smacking my face, his fist a perfect mate for my eye socket, I put him into what we call a “mama-lock”—my leg over his legs with a firm hold on his arms in an effort to calm his mania so we can both go back to sleep. Often, it works, both for sleep and for averting a black eye or a bloody nose (mine.)

As I hold his hand under the covers he begins to settle, and I think about how big and strong he is getting. I muse on the straitjacket. As my mind ambles toward sleep I remember something my parents told me, about how they struggled with my brother’s thumb sucking, feared he would ruin his bite and have to get braces that they couldn’t afford. They told me they had put hot pepper (or was it hot sauce?) on his thumb, but to no avail. Instead, they tied his hands to the bed frame so he couldn’t reach thumb to mouth. I shudder at the memory of their description. My stomach sours imagining my brother as a helpless little tot simply wanting—needing—the self-soothing we now know is so important to a child’s healthy development, while at the same time understanding my parents' worry. Heartache.

My sweet boy’s breath fans my face as he drifts off to sleep. I let him loose from the mama-lock and drape my hand across his shoulder, kiss his forehead. No matter how insane this household gets hopefully there will be no straitjackets. I’ll leave that one open for interpretation by the next new fashion-crazed designers. Straitjackets, padded leather truckers and Kevlar jeans. Perhaps already been done.

angst

Angst is the canker I feel from silent seizures, which steal their way into the dark hours, just like last night. Angst amasses, layer upon suffocating layer in an age-old glacier of dread. The seizures, long and weighty, mount—twice monthly, weekly, twice weekly, perhaps unseen others slipping under the radar of sleep.

When I found him my boy sipped the air, swallowed, shivered and shuddered, stared wide-eyed into nothing, seemingly unaware of my presence. We slid him into bed with us where he slept, at first, in Michael’s arms. Amid the trembling limbs of our son sleep eluded us.

In the big bed Calvin and I spooned, his diapered bottom nestled into my belly, legs curled up as if he were still inside me. I rested my hand on his thigh, touched its smooth fleshiness then felt his ribs which faintly rose and fell to the ticking of the clock.

Angst is the awful fusion of hate and fear and dread and yearning for something out of reach. I hate the seizures. I fear their numbers, their wrath. I dread the drugs for what they do and don’t do. I yearn for a remedy, which dangles just beyond my fingertips, a crystalline green flower with the power, perchance, to dissolve all of my angst and more.

photo by Michael Kolster

gift of a song

You are my sunshine, my only sunshine
You make me happy when skies are gray
You'll never know dear, how much I love you
Please don't take my sunshine away

The other night dear, as I lay sleepin'
I dreamed, I held you by my side
When I awoke dear, I was mistaken
And I hung my head and I cry

While sitting with my girlfriend beside a rolling fire, a bourbon in my palm, I hear my son sputter, choke and gasp for air. “That doesn’t sound good,” I say, and I sprint upstairs to see Calvin having a seizure in his bed. Teresa comes up to join me and we crouch at Calvin’s side caressing his face and body. In the dim light I can see that his cheeks are flushed and patchy, and he whimpers and clicks and swallows and whimpers again before trying to suck his thumb.

Teresa had arrived just before I put Calvin to bed. From upstairs I’d heard her let herself in, so I called for her to come up. Once upstairs she rounded the corner, greeted me with a hug then joined Calvin on the floor of my bedroom where he was mouthing his favorite toy, a plastic singsong book with a big yellow light-up button that, when pushed, says, “Hi there! Sing with me!” I watched her kneel down, pat and rub his back while talking to him. Her fearlessness and ease impressed me. “Very few people engage with Calvin that way,” I told her. “Most keep at arm’s length.” She went on to explain that her comfort level was probably due to the fact she sees Calvin so frequently at school, but I know differently. It’s just the way that she is. Open. Loving. Unafraid. Compassionate.

After Calvin's seizure, as she strokes his head, Teresa begins to sing You Are My Sunshine in a soft, soothing voice. It’s as if she’s done it a million times before. As I hear her words, her gift of a song, I realize that Calvin is my only sunshine, my only child, and even though he’s tough to take at times I know it’s not his fault. When she gets to the part in the song where it says, “please don’t take my sunshine away,” I find myself silently saying it with her, knowing full well epilepsy can do that sort of thing, can take our children away. Soon, Calvin's lids become heavy and we watch him drift off to sleep under the netted canopy, under invisible stars, under the waning moon that hangs in the sky overhead and under a velvet melody as if written just for him.

moon and stars

He howls as if at the full moon. It hangs in the sky like a weight, presses down on me. I used to be drawn to it, but now I feel only dread and wonder: dread for the seizures that seem to flank its coming; wonder at how it seems to tear and pull things apart then smash them back together. I see the moon in my son’s round face—his glowing complexion, his pools for eyes. I doubt he’s ever seen it himself, always drowning in a drugged-up sleep under its rays, never out at night gazing at the sky so full of stars, but which his weak eyes can’t possibly see.

Stars. What are stars? I cannot explain, cannot point in their direction or cast out a net to catch a falling ember before it expires. No star burns bright enough to inspire him to reach out and touch. Their points of light all dissolve into black, melting into the tops of trees and blanketing a field, a meadow, a sea. Stars mean nothing, reflect nothing, to a boy who cannot see them nor contemplate their mass or the spaces in between, nor know what is it to wish upon one that is falling.

photo by Jeff Berkes

some of the best people i know

What are seizures like?
Will Calvin’s epilepsy ever be over?
What do you do when a newborn baby is having a seizure?
Are seizures like falling asleep?
How do you get epilepsy?

These were some of the questions that Mr. Shea’s fifth grade students asked me last Friday. I’d gone to visit the class, the one that Calvin does art with, to tell them a little bit about my boy and about epilepsy. As they sat around desks and on the floor at my feet, I told them how Calvin was born prematurely and missing part of his brain, which made things difficult for him to learn and which was likely the cause of his epilepsy. One student told me that her brother had seizures as a child. Another student said that his uncle has epilepsy and that despite taking medications he still suffers seizures.

As I sat in front of them, regarding their solemn faces, listening to their thoughtful questions, I realized something that I often forget: kids are some of the best people I know.

Through the wall we could hear Calvin’s muffled shrieking in the room next door, in his Life Skills class, but the kids didn’t seem to be fazed in the least. I told them about the antiepileptic drugs and their side effects and how they cause Calvin to be hyper. I told them that for 70% of epilepsy cases the cause is unknown and that more than a third of people with epilepsy don’t have their seizures controlled by medication. When they asked what a seizure was like, I explained that there are more than thirty kinds and I tried to describe some of the common ones, adding that during some seizures people can injure themselves when they fall and hit their heads and faces. “Seizures can be scary, but they’re not weird and they’re nothing to make fun of,” I stressed. “You wouldn’t make fun of someone who had cancer,” I said, “and it’s the same with epilepsy, it isn’t their fault.”

When I told the kids how many people have epilepsy—one in one-hundred—I pointed out how often times people hide it because they are afraid of how others will react, but that it is important to talk about it so that everyone learns that it is not rare, that it is serious and that there isn’t a cure.

After about thirty minutes the questions dwindled so Mr. Shea wrapped things up. His students applauded. “I should be clapping for you!” I said with a smile on my face as I joined their applause, adding how thankful I was for their kindness and acceptance of my boy, who really is the best person that I know.

photo by Michael Kolster

a leg up

With Rudy in tow, plodding along at the end of his leash, I see my neighbor Mike slowly scooting himself into his truck. I wave and approach as he rolls down his window to greet me. Mike is ninety-one, and his wife died a couple of months ago. He lives next to Woody, my octogenarian friend who was widowed a few years earlier and who I visit every day or two to pilfer his candy jar before walking together in the fields.

Somehow, Mike and I always end up talking about politics. We have vastly different opinions on some issues while others overlap. Perhaps because of his height, he reminds me a bit of my dad, who would’ve been eighty-eight by now. Like my dad, having been raised during the depression, Mike’s stoicism and frugality are familiar, as are the way he keeps care of his cars, his house and his yard by using plenty of good old-fashioned elbow-grease. Although, when nursing his wife for months before she died, he had to let his yard go a bit, a legion of dandelions taking over in his absence. Seeing that he needed a hand with his burden, neighbors and friends pitched in to help him out.

This time, Mike and I get to talking about healthcare, jobs and taxes. With his elbow propped on the open window of his car door, he says, “Everyone should pay the same amount of tax, the same percentage.” With some healthy fervor, which Mike doesn’t seem to mind, I explain the flaws in his proposal—that, for instance, 20% of a poor person’s income cuts much further into basic necessities like food and shelter than it does for a wealthy person, and in that way a flat tax isn’t equitable. Mike reminds me that he came from a poor family, that his father, a hard worker, never made more than $3,000 in his life, but that they always made ends meet. “What about the guy who comes from nothing, works hard all his life and, as a result, makes millions?” he asks. I point out how the profits wealthy people enjoy come, not only from their hard work and initiative, but from the sweat of subordinates who, despite their effort, often live paycheck to paycheck. In my mind I imagine fast-food employees, migrant workers, garment makers and even nurses. I tell him that trickle-down economics hasn’t worked and that raising the minimum wage to a living wage would help hard working people get off of government assistance without killing jobs. “Many big companies are sitting on their profits, they’re not always investing in jobs, and they’re making millions and billions by exploiting others,” I say, and Mike nods his head as if in concession.

We talk about healthcare and of the junk insurance policies that have recently been dropped, the ones that shouldn't exist, the ones with lifetime caps and astronomical deductibles, the ones that exploit preexisting conditions and that don’t cover the cost of countless procedures, the ones that people pay for but get next to nothing in return—besides bankrupcy—when they become injured or ill.

We finish our conversation, Mike and I say so-long and as he drives off down the street he honks and waves. I stroll with my gimpy dog back home to my disabled, legally blind, seizure-ridden, autistic, nonverbal, developmentally delayed, drug-reliant son. I think of the cards Michael and I have been dealt, yet feel fortunate that we have affordable health insurance that can’t be taken away from us. I think of how we don't mind paying a little more in taxes so that others who aren't as fortunate as we are—people born into poverty or just simply down on their luck—can have health insurance, too. Because, besides being a human right, I understand that healthy citizens make a healthier community makes a healthier economy with fewer healthcare costs in the long run.

I wonder if the complainers, those in congress, and the powerful wealthy backing them, might feel differently about sabotaging—rather than improving—the Affordable Care Act if they spent just one day in the life of someone working a minimum-wage job with no health benefits and facing a family member's diagnosis of cancer. I wonder if they'd appreciate—and take—a leg up.

photo by Michael Kolster

unutterable

I turned silences and nights into words.
What was unutterable, I wrote down.
I made the whirling world stand still.

—Arthur Rimbaud, from A Season in Hell

photo by Michael Kolster

friday faves - lydia's story

Written by Anonymous

My story is just another shitty version of all the others, but it goes like this:

I was turning thirty-nine when I had Lydia, our third child. Normal pregnancy, normal birth ... everything was "normal" until she was almost two years old. Then she started dropping, seizing: atonic, tonic-clonic, myoclonic, absence ... all of them came in a flurry with a fever. There had been some earlier seizure activity that I only recognized as seizures after we learned about them. We were admitted to the hospital after an EEG that the technician implied was "very, very bad" (shame on him!) From there she had an MRI, which left us still pondering the "why?" because everything looked "normal."

I remember thinking please don't let it be a brain tumor. I had no idea that epilepsy was not benign, so I was hoping for epilepsy over a brain tumor. Little did I know, a tumor might have been able to be removed. Little did we know, this F-monster—epilepsy—was here to stay.

In the hospital Lydia began taking Depakote, and it stopped her seizures. Ignoring the doctor’s recommendation I did no research and left with my baby who seemed to be doing fine on the Depakote. Our struggle was how to get Lydia to take the sprinkles and make sure it all went down. Within a week, the seizures returned: all atonic seizures at this point. She dropped like a marionette with its strings cut. There was also some suspicious "blinking" that we learned was subclinical activity, but the blinks lasted longer and looked like the start of a drop. We kept increasing the Depakote until we couldn't anymore—her blood levels were too high—so we added Keppra. The Keppra didn't help, but by this point her doctor had said things like, "if we don't get these seizures under control your daughter will regress and lose all of the skills she has now." Lydia was not talking yet—a warning sign that I had attributed to her being the third child. He told us that she would never go to school. He told us that the medications she was headed for had fatal side effects. He told us she likely had Lennox-Gastau syndrome. I started to research ... and lose it.

We decided to get a second opinion. In doing so we learned that our doctor had failed to tell us to bring Lydia for lab work prior to giving her the morning medications, to get a “trough” level. This was why her Depakote blood levels had kept appearing to be too high. We fired Lydia’s first doctor who was quite young, clearly did not have children, had a poor bedside manner and was not an epileptologist.

Increasing Lydia’s Depakote and removing the Keppra helped while we waited for the new epileptologist to start at our local hospital. Though he was also young, he had a daughter exactly Lydia's age, was very empathic and kind and was far more knowledgeable about epilepsy than the physician we had fired. Still, it took three years of trial and error, allergic reactions and catatonia to get adequate control of Lydia’s seizures, which eventually returned after each drug increase and each "honeymoon period." We had to make a very difficult decision to try Felbatol, which came with so many warnings including a waiver that said we understood the fatal side effects and would not sue the drug company if Lydia died. Meanwhile, Lydia was not losing skills, but she was not progressing much either. The hundreds of thousands of mini seizures, which looked like the start of a grand mal or myoclonic seizure, though lasted only seconds—not even long enough to knock her down—were wreaking havoc on her brain.

Lydia has idiopathic generalized epilepsy ... possibly—though without certainty—Doose syndrome. The majority of her seizures are myoclonic or astatic, so her diagnosis is Myoclonic Astatic Epilepsy (MAE). We are five years into the nightmare, which compared to others' journeys, sounds like a cakewalk. But I have learned that it doesn't work that way. Epilepsy spares no one, really, not even the ones whose seizures miraculously, spontaneously just stop. Lydia will likely not be one of those cases. Her EEG is a mess. She is developmentally disabled and I find myself whispering the word "retarded" when I can see that the new, politically correct designation doesn't mean anything to my parents generation ... and even to some well meaning contemporaries who want it to not really be "that bad."

I would not trade in Lydia for a new Lydia, nor would I refuse having another child if I had been warned this might be possible. But I live on a cocktail of antidepressants and anti anxiety medication. I used to be pro-therapy, anti-drugs until I had my first panic attack five years ago. I have only three, close pre-epilepsy friends who remain after a mass exodus of other friends I later realized I made all the effort to maintain. Our families both live thousands of miles away and are not very supportive. They want to make things better and don't understand that listening and validating are more important than trying to change the subject or focus on the positive. My two oldest children keep me from lingering in dark places for too long. I am a busy stay-at-home mama.

Lydia’s future depends on the discovery of new drugs, new therapies—a cure. It is unlikely that her seizures will relent. This is my story, Lydia’s story. In the scheme of that which is epilepsy, I realize that we are actually the lucky ones. No matter. It still sucks.

From last November.

photo by Michael Kolster

powerless

Often, I surf the web looking for companion images to use on this blog. Common search words I use are seizure and epilepsy. While hunting for an image to go with a post about the aftermath and subsequent power outage of a tropical storm, I came across the one below. At once it reminded me of what a seizure might be like for those who suffer from epilepsy. The following words bled into my mind:

surge. prick. smother. blackout. pain. confusion. thug. shred. blind. strangulation. fear. attack. electric. shock. wired. dizzy. hold. on. bludgeon. helpless. brain. scramble. burn. cramp. coma. choke. alone.

Then I saw the name of the album ... POWERLESS. How miserably apt.

dear president obama

Dear President Obama and Michelle Obama,

My nine-year-old son, Calvin, suffers from a host of neurological conditions, the worst of which is medically refractory epilepsy. Despite the mountains of medications we pour into his little body every morning, noon and night, he still continues to have seizures, often lasting upwards of six minutes, during the first several of which we sit by helplessly as he stops breathing and begins to turn blue.

Born six weeks prematurely, Calvin failed to thrive. He was diagnosed with idiopathic ventriculomegaly (enlarged ventricles) and a significant absence of white-matter in his brain. Calvin, who is legally blind, nonverbal, cannot walk without assistance, has a form of autism and remains in diapers, is developmentally much like an infant or toddler. Though Calvin’s maladies cause my husband and I great strain and heartache, the epilepsy has easily eclipsed their burden.

Since the age of two, Calvin has tried nine courses of antiepileptic drugs—as many as four at a time—plus two rigorous dietary treatments. All have failed to control his seizures. The drugs further impede his development and cause him to suffer heinous side effects such as, though not limited to, headaches, dizziness, visual disturbances, confusion, fatigue, sleep disturbances, gait ataxia, memory problems, poor coordination, drooling, nausea, agitation, changes in appetite, hyperactivity and aggression. Statistics tell us that the chance a subsequent pharmaceutical will stop his seizures has dwindled to almost nothing, which is why we are pursuing the use of medical marijuana.

There is compelling evidence, both anecdotal and scientific, that indicates the use of a high-cannabidiol (CBD) low-tetrahydrocannabinol (THC) form of medical marijuana can greatly reduce and, in some cases, stop seizures without the psychoactive side effects of street marijuana. As you know, medical marijuana is legal in the state of Maine, but regrettably remains illegal at the federal level. Once Calvin begins the treatment, which will be administered orally in exact doses of oil or paste, if we were to take him across state lines (Calvin must travel with his meds) we would be considered drug traffickers.

Epilepsy has strangled and stranded our family. And, while it is difficult to travel with a hyper, agitated child who has terrible balance, to be sequestered—incarcerated—in a place thousands of miles from extended family, seems worse a crime than possessing a medicinal, life-enhancing, lifesaving plant extract with no psychoactive qualities.

I implore you to do what is in your power to legalize the use of medical marijuana at the federal level. It has proven to be the only therapy that has given hundreds of children with catastrophic epilepsies, such as Dravet syndrome, respite from their seizures and hope for a better life. For some it has undoubtably saved their lives.

Sincerely and with great fondness,
Christy Shake
Calvin Kolster’s mom

CC: Senator Angus King, Senator Susan Collins, Representative Chellie Pingree

think again

If you think you've got it bad, think again. Donate to help Typhoon Haiyan victims:
https://secure.unicefusa.org/site/Donation2?df_id=16500&16500.donation=form1

Photo by Noel Celis/AFP/Getty Images

Photo by Erik de Castro/Reuters

Photo by Romeo Ranoco/Reuters

Photo by Noel Celis/AFP/Getty Images

Photo by Dondi Tawatao/Getty Images

el niño

From Saturday evening:

I'm typing away on my laptop looking at Calvin's school photo from last year, second grade. It sits unframed at the back corner of my desk resting on a handful of glass pebbles in a square vase, also made of glass, as if floating in a crystal pool. If you look closely you can see a strand of drool as thin as spider silk trickle from Calvin's lower lip down to his shirt. In this photo, as in all of his other school photos, his eyes are hazy, his mouth slack—symptoms, I'm most certain, (along with the drool), of the effects of the anticonvulsant drugs. That the photographer got the shot with Calvin's head up looking into the camera is near heroic, in great part due to his one-on-one, Mary, who helped prop Calvin up and kept him still, and then was photoshopped out of the picture.

The photo, a favorite of mine, makes me happy and sad at the same time. Happy to see his soft features, tussled hair, cute ears, and sad because of the oblivion and fatigue it seems to express. Right now I am sad looking at it because Calvin just had another seizure in the bathtub. I'd been sitting right here writing while his nurse, Barbara, was giving him his bath. I was trying to enjoy—rather than dread—his excitedly crazy coos and vocalizations, which easily made their way down the stairs to me. Suddenly, the house became eerily quiet. I heard only the clocks ticking, the furnace running and the cars passing on the street out front. The silence continued until Barbara called out my name.

Upstairs within seconds, I took Calvin from her, a towel draped across his body like a toga, the rest of him naked and dripping. As we laid him on the bed and called him back to us, we noticed he wasn't convulsing at all, just still as a glistening stone, his thin legs curled up fawn-like. Barbara had set her phone to stopwatch, and around two minutes Calvin whimpered, "Uh-uh:" Mama.

For several more minutes he remained in a catatonic state, though his lips changed from lavender to pink. He said Uh-uh again, then once more. "Mama is right here," I told him, "you did such a good job ... it's all done, Baby," and I kissed him again on the neck. "Day eight," I said to Barbara, though in reality it was only day seven. "Last fall he went seventy-eight days," I added, "He's having seizures ten times as often as that," I told her, and we dressed his warm, floppy body, then she gathered him up and laid him gently into his bed.

We'd seen it coming: his lackluster morning; his intermittent shrieking; his stubborn refusal to walk down the wide hallways of the mill under flickering fluorescent lights; his insistence on being picked up; his seizure-breath; his unusual lack of smiles. Yesterday's good day had been the calm before the storm. I'm feeling a sort of global warming coming on, an increase in these white-hot events, an El Niño. I want to batten down the hatches, sandbag—anything—to save my kid from these waves of seizures and drugs that wash over his brain seemingly drowning him right before my eyes.

losing my mother

From last November, though not much has changed:

I’m losing my mother by bits and pieces, like grains of sand slipping through my fingers. Her brain seems just as they describe it, like Swiss cheese, although I think of it more as cheesecloth, all cobwebby and frail.

We speak on the phone every couple few days. By her tone I can tell she knows it’s me, at least at first. In most conversations of late she asks me where I am, how long I’ll be here and when I am coming to visit. We do-si-do around these topics for ten minutes or so as I sprinkle in some questions of my own.

“How are your knees?” I ask.
“Oh, they're pretty ... easy,” she replies, and by that I understand they aren’t hurting her too much.
“What’s the weather like today, Mom?”
“Not so good, stuff is coming all over and it’s ... heavy,” she explains, and I confirm that she means it’s rainy and grey.
“Yes! That’s exactly!” She adds.

Mom turned eighty-three on Election Day.

“That can’t be!” she exclaimed.
“So, how old do you feel, Mom?”
“Well, I hadn’t really thought about it.”
“Fifty?” I asked.
“No, not quite.”
“Sixty?”
“I think you’re about right.”

That day was a good one for her. She seemed more lucid, sharp.

“Mom, you’re great,” I continued.
“Well, thank you veddy, veddy much,” she spouted in her usual upbeat way, “but you’re the great one.”
“You know why I’m great, Mom?”
“Because you’re my daughter,” she answered plainly, and I knew she was on her game.

Today’s conversation wasn’t so good, though at least she was happy-go-lucky. I told her about Calvin and she asked when she’d get to meet him, forgetting that she’d met him before. I mentioned the difficulty in traveling with Calvin and she wondered why. “Well, Mom, because he can't talk and he can't walk by himself and he's still in diapers, so it makes travel hard,” and I went on to explain about his seizures and the drugs. “I'm so sorry,” she said in a sad tone, “will he ever ... grow up?” I told her I wasn't sure but that I didn't think so.

“When are you coming to visit?” she asked for the third time.
“I’ll try to get out there in the springtime, Mom.”
“OHHHH! That would be super-duper! I better write that down somewhere so that I remember,” she added, concentrating.
“I’ll remember for you, Mom, you don’t have to worry about a thing.”
“Oh, all right, if you say so,” she piped.

Then she asked me again when I’d be visiting.

September 2012

room of white

I approach the room which is glowing with large white paper umbrellas open and propped sideways on tables, each with its master standing at its side. Everyone is wearing long white t-shirts spattered with paint and glitter. It’s Mr. Shea’s fifth grade class painting beautiful parasols under Ms. Moll’s kind, creative direction. I enter just behind Calvin who is greeted by a chorus of young voices chirping, “Hi Calvin!” A few of them look up from their projects to see Mary, Calvin’s one-on-one, wheel him into the class in his special chair, my boy clad in an oversized t-shirt spattered like their own. It is time for Calvin to make art.

Calvin is at his most hyper and I cringe. I mention to Ms. Moll, Emily, that it’s either because he has to poop or burp or it’s the change in his meds or it’s that he’s going to have a seizure later. I imagine it’s all of the above. Calvin shakes his head back and forth like a dog with a bug in its ear, screams and flails and laughs hysterically. All the while the other students attend to their craft with great focus as if Calvin isn’t even there, their feathers not ruffled in the least by the crazy bird that is my son. He is one of them. They’ve put my little third-grader under their wings.

I introduce myself as Calvin’s mother and big smiles come across the students' faces as they welcome me. One girl says, “Hi Mrs. Kolster," then wonders if that is what she should call me and I say, smiling down upon her, “You can call me Christy.” Emily tells me that these students are working on a special project that her other classes aren’t doing and it’s because, she says, of how kind they’ve been to Calvin. I stifle my tears. She shows me her array of Harriett Beecher Stowe paraphernalia she’s collected in honor of the school’s namesake. I mention how Uncle Tom’s Cabin is one of my very favorite books, and I think of the others—Mary Shelly’s Frankenstein, Catcher in the Rye, The Great Gatsby—all classics, all about misfits, eccentrics, runaways. And I think about myself. Then I consider my son sitting there like a little monster, and realize that this character, despite his odd behavior, his lack of words, his inability to assimilate, is loved by so many.

While Mary and Calvin slather paint on a gesso board and on each other I watch the other students busily working away. Emily shows me the glitter and special gold paper she wants to use for Calvin’s next project. I can see her love of craft, sense her fondness for texture, color, shape and function. It's something that I vaguely recognize in myself, well faded by now having been years since I put a brush to canvas, a pencil to paper or a stitch to cloth. Now my art is in words.

As we stand in the doorway I tell her about Calvin and his seizures and my quest for medical marijuana to treat them. Her dangly earrings, like strands of shells or buds, glow frosty white. The whiteness of the room, the gentle nature of the students, the Zen of the space fills me, lifts me up, cools me off. “Bye everyone,” I say, and they respond in unison as they did at the start. “Thank you for being so kind to Calvin. Can I come back again sometime?” Their smiles and eyes, as well as their words, tell me, “Yes, please," and with that I know the world is going to be okay.

friday faves - before dawn

Hiss. Buzz. Crackle. All night long, every night, I listen to the monitor from hell. I've got to replace the battery to see if it will stop its loathsome sputter. It's one of those things that we can’t live with and we can’t live without, had been there for us one time when Calvin had a seizure in bed while we were eating dinner. We’d found him mangled, partly on his stomach, partly on his back, with his face smashed into his down comforter. Finding him like that made me wonder, if we hadn’t had the monitor, would he have suffocated during that seizure? Would we have gone up to bed that night to have found him dead, like some parents of kids who have epilepsy do, like all parents of kids who have epilepsy dread.

The downside of using the monitor is that I get very little sleep, waking to every stir, swoosh, sigh, whimper, snort, rustle. This morning, long before dawn, not unlike the previous five mornings—perhaps the previous five years—I awoke to the sound of my boy smacking and rubbing his forehead, likely due to a headache either from his anticonvulsant drug reduction, an ear infection, or tummy upset. So I repositioned him and covered him for what felt like the millionth time and offered him a sip of water from his bottle. Within forty-five minutes he was asleep.

In sheer exhaustion and exasperation I crawled back into bed angry at the world. Through the windows I watched the familiar, black pines swaying gracefully in the wind, heard the chimes' melancholy tune, thought about Orion and the man on the moon hanging silently somewhere in the sky over our house and felt sorry for myself. And then, my mind wandered to another family who might be sleeping under Orion's gaze, whose father wrote to me last fall about his son who, at the time, was hospitalized to undergo a dangerous, medically-induced coma to try and stop his seizing:

no issues at birth, normal delivery. Began having seizures at 3 mos. following DPT immunization. Hundreds of myoclonic seizures per day. Lived this way until aged 7, when seizure type flipped abruptly to grand mal. About 80% of his seizures last longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of them. Significant brain damage. Fourteen years old but developmentally about 3-4 years.

Then I realized how so many of us have it hard, some more than others, and I stopped feeling sorry for myself, wanted the hurt of others to go away.

Calvin slept soundly the rest of the night and didn’t wake until almost six. I rolled out of bed feeling somewhat rested and thankful that we weren’t in a hospital, thankful that the night’s anxious, hopeless, melancholy dissolved some with the dawn. And reaching over to turn off the monitor I heard my child’s sweet eager coos calling for his mama, even amongst all the hissing and crackle—and I felt grateful.

In honor of epilepsy awareness month, please share Calvin's story and help bring us one step closer to a cure. Give to cure epilepsy: http://www.calvinscure.com

From November 2011, though written as if it were yesterday.

photo by Michael Kolster

reefer madness?

In my recent research of medical marijuana, I came across a report of a parent survey of cannabidiol-enriched cannabis use in pediatric treatment-resistant epilepsy. The entire report was quite intriguing, but what gave me goosebumps was typed at the end of the last page:

Quality-of-life surveys show that the adverse effects of AEDs (antiepileptic drugs) have as much of an impact on the patient's ability to enjoy life as the seizures themselves [20]. Our survey reports suggest that cannabidiol-enriched cannabis is behaviorally well tolerated and may have beneficial effects on cognition and mood. Many parents reported that their children experienced better sleep, increased alertness, and better mood while taking cannabidiol-enriched cannabis. These beneficial side effects are rarely reported with pediatric use of other AEDs [21]. Additionally, many negative side effects commonly associated with AEDs, such as irritability, insomnia, and aggressive behavior were notably absent from the parent reports on cannabidiol-enriched cannabis. Because of the apparent efficacy of cannabidiol-enriched cannabis, 12 parents reported weaning their child from other AEDs, thereby further increasing the child's quality of life by removing the negative side effects associated with those other AEDs.

Although each seizure Calvin has sends me into a state of despair, it's his hyperactive behavior from the drugs he has to ingest that takes its toll on me emotionally, not to mention how it must make him feel. And, so, it is with great hope that I am pursuing this form of treatment for my son, though it is not without misgivings; although it is legal in the state of Maine and Calvin will have a prescription signed by his pediatrician and a letter of recommendation signed by his neurologist and I will have a license from the Department of Health and Human Services to give it to him, it is still illegal at the federal level. This means we cannot take Calvin out of the state once he starts taking it.

For this we can thank a number of factors, beginning with damaging, exploitative propaganda such as the 1936 film Reefer Madness, which portrayed marijuana users as sex-crazed, murderous, suicidal maniacs. The film was originally financed by a church group and thought to be backed by the DuPont corporation, which saw industrial hemp as a threat to its business interests in wood-pulp paper and synthetic fabrics. Marijuana was further vilified by the racist mogul William Randolf Hurst, whose vast timber and paper mill holdings were also believed to be threatened by hemp. And, marijuana was maligned by Harry Anslinger, the first commissioner of the Federal Bureau of Narcotics, a close friend of the DuPont family whose department's funding might have been cut during the depression if not for the lies he told about marijuana's dangers to society. Sadly, America's puritanical base, the war on drugs and the pharmaceutical industry have all likely helped to perpetuate marijuana's false reputation and have stymied decades of research into its benefits for conditions such as MS, migraine, epilepsy, cancer, Parkinson's disease, diabetes, Crohn's disease, arthritis and autism.

Thankfully, it would seem that people are beginning to see through the lies and false propaganda and are giving medical marijuana, at the very least, a chance at saving lives. Do what you can to help legalize medical marijuana at the federal level, even if it is simply by opening your mind. Kids like Calvin are counting on it.

If you cannot view this video click here to see it on You Tube.

failures

Many of life's failures are people who did not realize how close they were to success when they gave up.

―Thomas A. Edison

Thomas Edison

savannah's story

Written by Tracy Dixon Salazar, Savannah's mom

I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “Her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.

Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.

It has been devastating to watch what epilepsy has done to my child. With over 35,000 seizures in seventeen years, it has definitely left its mark. At twenty, Savannah is the developmental age of a five year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.

Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.

Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve chosen a career as a researcher.

During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.

Fifteen years later, I have a PhD in neurobiology and am an epilepsy researcher.

As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.

Update: About 18 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium-channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium-channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 18 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 15 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!

Savannah with her seizure-alert companion, Yukon

dear mr. zappa (with video)

Dear Mr. Zappa, Dweezil, if I may,

First of all, I loved your concert, just as I did the summer before last when I saw you play live for the first time. Regrettably, I don’t experience much live music in Maine, so to be sitting in row seven of the State Theater near center stage, watching and hearing you work your guitar, seeing Sheila jam and witnessing each musical genius up there with you was truly sublime, and proved a much-needed escape for me. Thanks for coming to Portland.

The main reason I am writing, however, is not to shower you with praise—though to be honest my face hurt from smiling so much during the three-plus hours that you and your amazing troupe performed—but to tell you that something you said stung me. It was the comment you made during the audience-selected stage show you conducted during Bepop Tango when you told the dancers something like, “You need to be a little more epileptic than that.” I’m pretty sure you meant no harm, so I’m not scolding as much as I am hoping to enlighten you. You see, my nine-year-old son, Calvin, suffers from medically refractory epilepsy, which means that despite taking loads of powerful mind-numbing antiepileptic drugs he still suffers regular seizures and has so since he was two. The seizures are not fun to watch, they are not weird, they are not humorous, they are not a spectacle, they are not to be made fun of. I wager if you saw your own child have a six-minute convulsive seizure, one in which he didn’t breath during the first several, turning blue as a result, you might not have chosen to instruct your dancers to be more “epileptic.” And since one in one-hundred Americans suffers from epilepsy—likely all of them medicated and more than a third lacking seizure freedom despite the medication—I imagine I wasn’t the only audience member bruised by what you said.

I know that your father lampooned most anyone—gay men, Catholic girls, Jewish girls, etc.—and that no one was immune. I get that. And though his legacy may not be why you chose to say what you did, I want to point out that people with epilepsy have, for thousands of years, been trying to free themselves, not only from the seizures themselves, but from the witch hunts, the stigma, the myths, misconceptions, institutionalization, forced sterilization, shame, discrimination, marginalization and mockery, none of which they deserve to endure on account of their disease, their disorder.

I want to leave you with this short video I made of just one of perhaps thousands of seizures Calvin has had in his short life. I have no doubt that the seizures and the drugs have robbed him of his true potential, whatever that might’ve been; it is likely lost.

Thank you for listening, Dweezil. I'll keep listening too.

Christy
Calvin’s mom

This video may be difficult for some to watch. If you cannot view it please click here to view it on You Tube.