Friday, March 25, 2011

To Be Seizure Free

I will miss the National Walk for Epilepsy which takes place this Sunday in Washington, D.C. Since I'm "Van Winkled" I won't know what the turn-out is like either.

But I do know that with the cherry trees in blossom, thousands of people will gather on the National Mall and walk together to draw attention to this disease and lobby for more research to find a cure.

It's an American habit to walk or run for this or that malady. We gather, listen to speeches, collect money from the sponsors of our walk, and then we go home and hope something changes over time...

...that the life of someone whom we love gets better. Or, if it's too late for that, that others don't have to live with the disease.

But what about epilepsy? In the past I would have shrugged my shoulders. It wouldn't have mattered if you told me that 200,000 people will be diagnosed with it this year. It wouldn't have caught my attention if you said that the prevalence of epilepsy would fill 30 cities the size of the one I live in.This disease was invisible to me.

Not any more.

It Looked Just Like He was Dying
There was a bright, happy only child living an idyllic life. He was a straight A student, he loved to read and draw and make things. He sang in the shower.

I speak of our son.

My wife and I sometimes joke that for two melancholics like ourselves to have such an upbeat, cheerful offspring amounts to a natural cure. As long as he's in the house and pulling us toward sunlight and rainbows, we'll never have to start taking anti-depressants.

But a cloud came over this ideal family portrait. On May 26, 2008, our son had his first seizure.

Quickly, it went like this...

He had been running a fever for several days. He had a stomachache and he vomited several times. He was a bit better and napping with his mom that afternoon. Suddenly he began to tremble and moan.

His mother, phone in hand, punching 9-1-1, ran to the outbuilding where I was lifting weights and listening to loud rock music. She screamed at me. She then ran barefoot across the street to where our neighbor, a fireman lived.

I ran into the house and reached the bedroom. Our son's eyes were rolled up. He was pale, shaking all over, and completely unresponsive.

I held on to him and said, "It's all right, buddy. Stay on your side. Be comfortable." I was terrified.

This had come out of nowhere.

It looked like he was dying.

He was turning blue.

The EMTs arrived.

I"ll always remember what record was playing on my old turntable when my wife interrupted my workout. I ran out of the room with the needle still riding in the groove. It was the second album by a band called Steppenwolf. The song was "Magic Carpet Ride."

I have never listened to the song since.

A Literary History of Epilepsy
What little previous knowledge I had of epilepsy came from literature.

We read William Shakespeare's Julius Caesar in high school. The mighty ruler collapses early in the play and is said to have "the falling sickness."

I was surprised to learn that Shakespeare hadn't just stuck this in for dramatic effect, but that it was believed to be historically true. Caesar had suffered in his adulthood from what appeared to be what today we call epilepsy . At school I was assigned to lead discussion of the play. I thought I was clever when I began by writing on the chalkboard.

My other literary exposure to this disease came around the same time when I read The Idiot by Fyodor Dostoevsky. The great Russian writer, afflicted with epilepsy himself, knew what he was doing when he gave his Christ figure protagonist, Prince Myshkin, the disease.

Through Myshkin's perceptions we understand the sort of pre-seizure halo effect that some epileptics experience. It's a feeling of connectedness and calm that is so great that Myshkin briefly considers that it might be worth be dying for just to have those few seconds.

Prince Myshkin decides this exquisite feeling isn't worth dying for. The violence and the distress of the seizure upon himself and others are horrific. At one point he is attacked by a knife wielding adversary. The shock of the assault causes him to go into a "fit" and he falls down a set of stairs. This actually saves him from being stabbed to death.

At the time I thought, "Oh nice! This Russian writer guy may have a reputation, but this is pure melodrama!"

I didn't know what I was talking about. I would have to wait almost forty years to read the scene right. With tears in my eyes.

When a second seizure occurred a week later (after our son's other symptoms had gone away) we knew he not had a "febrile seizure," i.e., one brought on by a fever. Something else was going on. An MRI revealed a "white area" in the temporal lobe, an indication of excessive neural activity and a clearcut diagnosis of epilepsy could be given.

He began taking 300 mg. of Tegretol each day. He would do this for two years. Last year, because he had remained seizure free, the doctor took him off the medication.

Anti-seizure meds are a blessing and a curse. For most people they are powerful enough to keep the brain from kicking into the hyper activity mode that causes seizures. However, they can eventually lead to side effects including sexual dysfunction and organ damage and a shortened lifespan.

This is why it's fortunate that 70% of epileptics are eventually able to be taken off medication.

Still, this is not the same as being "cured." All these years after Shakespeare and Dostoevsky, little is understood of this disease. A Newsweek cover story a couple of years ago explored this--how epilepsy is as widespread as breast cancer, yet research dollars directed toward it are only a fraction. Why is this? Could one reason be that the disease is invisible? That it is kept further "undercover" by an unwillingness to talk about it?

Hence the need for a Walk for Epilepsy.

By the Cherry Blossoms
In Washington, D.C. there will be several messages conveyed by the walkers.

1 - This disease strikes primarily the young and the old. It does not single out more than anyone else the gifted like Julius Caesar and Fyodor Dostoevsky or, most recently, it has been theorized the great composer and pianist Frederic Chopin. Thus there is no silver lining: have the disease and you'll be compensated with some special talent or genius.

2- Epilepsy can happen to anyone. Chances are someone you know has it or knows someone who does. The woman who comes to clean our house has a grandson with epilepsy. You can tell how he's doing when you see the expression on her face when she arrives at the door each week.

3 - Epileptics and their families live in the shadow of not knowing. Will it happen again? What if I'm driving a car or operating equipment or standing in the bathtub when I have a seizure?

4 - People are afraid if they happen to see someone having a seizure. Little wonder. As I've tried to relate it's one of the most frightening things one can witness. This is why in old days epileptics were considered demon possessed. It was so bad looking it had to be happening at the behest of forces of evil or because the person was an "idiot." There's still that social pariah aspect of the disease. This needs to change.

So they are walking in Washington, D.C. to show everyone we are your neighbors, we are just like you except we have this thing we have to live with. We seek your acceptance and your understanding. We walk in the hope that something can be done. - V.W.


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