sick. lovesick.

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

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

inertia

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

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

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

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

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

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

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

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

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

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

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

out of control

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

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

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

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

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

you're not immune

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

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

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

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

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

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

life just is

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

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

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

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

things I am thankful for

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

know what you don’t know

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

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

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

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

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

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

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

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