not what you think

The other day a friend of mine walked her dog by the house as I was gardening. I greeted her in my grubbies—a rolled up pair of worn green twill pants, yellow rubber ankle boots, a ratty sweatshirt and dirty gloves. I’d been wearing it all for the past three days to save on laundry, and because I throw on the first thing I can find on the floor from the night before just so I can get out into it as soon as I load Calvin onto the school bus.

We talked of dogs, of kitchens, of the sucky spring weather we’ve been having, of lilacs, daughter’s weddings, dresses, son-in-laws to be, goats and Calvin. She reads the blog. She mentioned how she had no idea that Calvin had as many seizures as he does, that she thought he only had one every few months, that is, until she started reading the blog.

I told her about how some people have hundreds of seizures every day, every hour, every minute, and that their brain doesn’t have a chance to rest, to learn. For these unfortunate souls—and they are not few—there aren’t many options, if any, for seizure freedom. I told her of one uncommon therapy called a medically induced coma. This therapy is reserved for the very worst cases of epilepsy—those where the seizures are pretty much non-stop around the clock—when other medicines and diets don’t work, and when the patient isn't a candidate for brain surgery because of the types of seizures they have, like Calvin. The induced coma is risky and has an extremely high mortality rate. Even if it works the seizures often come back after months if not weeks.

Other people, in an effort to cease their seizures, have half of their brain removed in what is called a hemispherectomy. I kid you not. Others have the connection between the two sides of their brain severed, prohibiting the focal seizures from spreading to the entire brain. Still others have a pacemaker type of device surgically installed in their chest cavity with a wire that wraps around the vagus nerve in their necks sending regular electrical impulses to the brain that somehow reduces seizures. Many of these people still have to continue to taking antiepileptic medications to fully control their seizures.

Calivn, however, is in a terrible limbo unable to enjoy seizure freedom even while taking multiple anticonvulsants plus a rigorous, exacting high-fat diet. He is unable to benefit from brain surgery and too young to try the nerve stimulator. So Calvin, like hundreds of thousands of other children and adults, must continue to suffer the scourge of seizures while having to endure side effects from mind altering, mind numbing, mind f-ing drugs that send him further and further into retardation. And don’t forget the painful blood draws, the sleepless nights, the worry, the dread, the bleak outlook, the mortality.

Epilepsy is not what you think. Before Calvin started having seizures I thought that epilepsy was a benign condition for which you take a pill and everything is okay. Well, let me tell you again it is not. It is the furthest thing from that. It is a virtual hell that can strike anyone at any time and there is nothing you can do to prevent it from happening to you or someone you love. It just happens.

Please share Calvin’s story with others to promote epilepsy awareness. Help bring us one step closer to a cure. It’s not hard. Just do it one story at a time.

Calvin's EEG October 2008 photo by Michael Kolster

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