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Seizures are Suddenly Sexy

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It happened when Betty Ford ‘fessed up to alcoholism, when Rock Hudson came out as having AIDS, and when Michael J. Fox got Parkinsons disease. Possibly the case with the greatest impact was Superman in a wheelchair. Every time a celebrity is diagnosed with, or confesses to having a medical condition, that condition becomes miraculously legitimatized, even sexy—not, of course, in the literal sense, but in the sense of being “The Disease of the Month.” Suddenly, you no longer have to spend a conversation about the condition in question explaining what it is and poking holes in absurd mythology. Yesterday I might have told someone my son had seizures and they’d gasp and ask if he goes to regular school. Today when I tell someone the same thing they’ll blithely say, “Isn’t that what Chief Justice Roberts had?”

Because a person having a grand mal seizure looks scary–almost otherworldly–the stigma attached to epilepsy is intense. A hundred years ago people believed the devil was trying to escape the body of a convulsing person. People were blamed for the condition: it stemmed from their own evil-doing. Epileptics hid their condition from employers; some still do. Of course, the stigma didn’t vanish the minute a Supreme Court Justice had a seizure: an early report from Maine Coast Now noted that Roberts “was ashen and was foaming at the mouth.” Lovely. Sure, spittle tends to bubble up in the corner of the mouth of a seizing person—but foaming? Like a rabid dog? Even some of the terms I’m using here are loaded: epileptic; convulsing. For all I know they’re politically incorrect.

Most reporting about Roberts’ episode has been far less dramatic—in fact, it’s been a lot more blasé than I would have expected. Possibly doctors and reporters are protecting him from having his ability on the bench questioned, so they’re minimizing the impact seizures might have on the judge’s everyday life. But epilepsy is complicated, primarily because a person has no idea when a seizure will hit. As with earthquakes, beyond storing extra food and water, there’s not much you can do to prepare for a seizure other than to educate the people around you. Some parents are told not to let kids with epilepsy go swimming (that was fun), and some states don’t allow people to drive until they’ve been seizure-free for a designated number of years.

Still, these limitations aren’t the half of it. I know what living in an unreliable body can do to a person; I’ve had a front row seat for 34 years (my son’s first seizure occurred when he was 8). I also have a close friend whose first seizure, the result of surgery to remove a tumor when she was 10, hit her in the vulnerable teenage year of 16. With earthquakes you can’t absolutely trust the ground you’re standing on to hold you up. It’s the same with seizures–you could suddenly fall down in convulsions, scaring everyone around you; or, worse, get seriously injured. Doctors were always telling me that seizures weren’t really dangerous, but I’ve heard plenty of stories over the years about seizing people drowning in the shower. Living inside a body that can, at any moment and without warning, go haywire, subtly undermines a person’s self-esteem. Both my son and my friend say that seizures have had a far greater impact on their lives than the underlying, and quite serious, conditions that caused them.

I wonder how someone like the judge, who I’ve heard has led the charmed life of a Golden Boy, will adapt to his new reality. Maybe because of his age, epilepsy won’t chip away at his self-confidence the way it does to children and young adults. But I doubt he’ll get off scot-free: he’s going to suffer some psychological repercussions. Already the issue of whether or not to take anti-convulsant medication looms large. If he does choose to take meds, he might have to try several kinds before finding one that works without devastating side effects. During the process he’s likely to experience inconveniences, from feeling irritated to outright trauma: all anti-convulsants have terrible side effects. Some make you hyper, some knock you out, others make you unsteady on your feet.

510b98mbx7l_aa240_.jpg The best portrayal of seizures I’ve ever seen is a TV movie, available on DVD, starring Meryl Streep: First, Do No Harm. The patient in question is a small child, so the side effects are more severe than with an adult. Still, Judge John Roberts is in for an adventure of some kind.

Which isn’t a bad thing. Many years ago I sat in a room full of upper middle-class parents of kids with hydrocephalus, sharing our stories. One mother prefaced hers with, “We were a normal family, doing all the normal family things—you know, ski trips, Disneyland—and then hydrocephalus came along.” I thought to myself, Lady, you should get down on your knees and thank god that hydrocephalus came along to teach you a thing or two.

I don’t know for sure if Chief Justice John Roberts actually has lived a trouble-free existence until now, but if it’s true, then epilepsy just might serve to teach him a thing or two. It might even give him a greater capacity for compassion—and god knows, we could certainly use more compassion on the Supreme Court.

 

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5 responses »

  1. Hi I too have hydrocephalus and it was apparently a genetic condition that should have been diagnosed when I was born and possibly before. It has taught me that every day is a blessing and that good health should never be taken for granted. Thankfully I am not as bad as some people who have this condition but it does have certain drawbacks that the drs cannot explain. So I take one day at a time and never regret a thing. Life is a gift. Today is the present, Tomorrow is unknown.
    Dance like no-one is watching….
    Regards Kathy

    Thank you for your comment. I’m sorry to hear you have hydrocephalus; fortunately, it sounds like you may have fewer problems as a result of the conditon than some people do. It’s true the doctors don’t know how to manage some of the resulting effects of hydrocephalus, particularly as children turn into teenagers, then young adults, and onward. More research in other fields such as social sciences and psychoneurology is needed to address quality-of-life issues as people w/ hydrocephalus grow and change.

    As far as diagnosis, it isn’t always apparent at birth when hydro is present, and even less so before birth. My son was diagnosed at birth only because his head was asymettrically shaped, so the doctor suspected something. I’m not all that familiar with more recent diagnostic methods.

    If you haven’t been to the Hydrocephalus Association website, I recommend you check it out. They host a conference every two years that’s a fantastic opportunity to meet other people with hydro and learn what’s being done about these issues.
    http://www.hydroassoc.org. Best of luck to you.–MS

  2. Absolutely fantastic post, thanks!!!!

  3. very nice marcy!!!!

    GREAT to hear from you!–MS

  4. what I’d like to know is If a third vent op is failing what are the symptoms … as I dont have a shunt ?

    I can’t answer that question; I suggest you ask your doctor, or visit the Hydrocephalus Association online. Good luck to you — MS

  5. This was just posted to my Facebook. I know it’s old, but I enjoyed reading it and believe it’s still a valid piece for anyone to read. I’m glad Chief Justice Roberts seems to be doing well now, and it should be said that many of us do. I am one who lives well with epilepsy after experiencing my first seizure as an infant. For me, even at my worst with the szs, the med effects were the most unbearable factor. I even decided to wean off meds and put up with the very occasional sz, which was okay, since mine occurred at night, in deep sleep, and my aura would wake me up. The aura is also long–several minutes–and I have only a handful of triggers, so I find it fairly easy to manage, but I know I’m also very fortunate to be able to say that. I only got complete control after starting Keppra almost three years ago, as my very stubborn and brutal simple partial clusters (“auras” occurring in bunches) didn’t respond to anything until the Keppra, and they would make me too sick to leave my bed until they stopped. By then, I’d have had about 30 or 40 in a single day, and sometimes for as long as 4 days, with every season change. Now I can say I am free of them–at last! 🙂

    It’s so good to hear a “success story” like yours; I’m glad your seizures are under control. I know how debilitating they can be, and how they can affect a person’s whole life. Sounds like you’re handling the situation very well. Thanks for reading and commenting. Good luck to you!–MS

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