A Quiet Rage Quashed and Thwarted

Afternoon of a June day, 2009

Today is a quiet day raging. We have those days from time to time, and they involve the secret which is not really a secret but which nonetheless is not something Greg advertises, and would prefer wasn't discussed.

If I had to pick one word to discribe this, it would be the big Mystery. Epilepsy. What is epilepsy, and how, and why does it happen? The truth is for every known, there are a thousand unknowns. What causes it, what sets it off, what stops it, or lessens it?

Greg has had gran-mal epilepsy for forty years, this year. He's beaten the odds. Epilepsy shortens life spans, stunts lifestyles...and thwarts dreams and aspirations. But not my guy. He graduated high school, went to college, lived large, went to graduate school, built a successful law practice, traveled, raised a daughter and two step-sons. And, to use a phrase my father uses, in betwixt and in between, he was knocked down often, with horrific seizures, leaving him battered and exhausted and ashamed. And each time he picked himself up, fixed the broken bones, bandaged the wounds, had a rest and got right back out there in the business of life.

Then, (was it 13 years ago?) in a tumbling series of events, he had a seizure that lasted 45 minutes and left him on life support in an intensive care unit, in a coma. What it did not leave him with, was his memory. He forgot law. He forgot people and names. A fork was a spoon, blue was green, sugar was white, so therefore flour works like sugar, water was sprinkles; we had a new vocabulary that stretched reasoning. Everything he worked for all those years was gone. He couldn't read and remember.He didn't know what his favorite foods were and couldn't walk up and down steps. His seizures increased in frequency and were increasingly dangerous. Without getting into the long, long, hard road back to an assemblance of normalcy for him, I will only say that this is a guy who, despite all he had lost, had not lost his determination to live life with gusto.

A year later, Greg chose to undergo a procedure to implant a "pace maker for the brain" in the chest; a wire runs under the skin from the implant, up the neck and is clamped onto the vagal nerve. The VNS implant by Cyberonics. A long-shot with a 33% success rate, it was one-third more of a chance for a new life than not trying it. It didn't bring back his memory, but it lessened the seizures and he rebounded. After all this time, he can now read and remember what he's read. He can walk without falling down. He feels good almost all the time and except for the seizure he had after his latest surgery, we can't remember the last time that happened.

But once in a great while, he has a bad day. He feels off. He feels jumpy. I make the house quiet. I shoo away the world. I give him a little extra medicine, and he uses the magnet that comes with the "machine" to pass it over the device and set it off twice as strong, and twice as long. Rebooting, we call it. And after rest and quiet, he is defragged, and rebooted, and we pick up where we left off.

Epilepsy still strikes fears in bystanders and carries with it stigma. I wish it didn't. I have considered writing about Greg's epilepsy a hundred times or more, but didn't because of what other people still think of it and what he thinks of people knowing. But then I read on some forums the posts of young people who are diagnosed with it, and how they feel like their lives are over. "Who would want to date me now?" or "I wanted to be a ....but now I have epilepsy." or "What do I have to look forward to now?" And I think that Greg, with all he's been through, and all he's done, and our adventures, is a testiment to the fact that epilepsy does not have to define who you are or how you live your life. It is simply another aspect of your life.

Here we are. In Patagonia. We have our adventures, our foibles, and our past, present and still...our future. Epilepsy never stopped him, or us from anything. Greg is nestled in front of the wood stove. He took his extra medicine, and swiped his magnet. He is sleeping. Patagonia raging outside, and epilepsy raging inside. But I think we have quashed and thwarted the Mystery for today. His practice of law is far behind him, but it's there. He did it. He has nothing else to prove. He has three wonderful children, a grandson. Me. He picked coffee in Panama, snorkled on coral reefs in Costa Rica, cut wood in Patagonia, fought with his wife over tire chains, slept in stinky hostels, and is ever struggling with learning Spanish. Tomorrow he will be back on his game, and the back porch needs organizing and there is a fallen tree to cut up for firewood. And that is life with epilepsy. It's nothing to be ashamed of.

[a post script: Three countries and a thousand adventures ago, a well-meaning person asked me what the hell I was thinking dragging my husband, with all his medical issues, to third world countries, so far from modern health care. First of all, I thought..."I did not drag him, HE DRAGGED ME!" And second of all, and more importantly, if we lived a safe, practical life, where we could cross the street to have emergency care... What kind of life is it? What kind of life is it if you live immediately for every eventuality? I think I speak for Greg when I say that I would rather have every morning we had in the highlands of Panama with the Mono Congo monkeys howling in the mist over La Amistad International Park, or every evening we had with the sun setting on the Pacific Ocean as we slipped into our sandy sleeping bags to avoid the sand fleas while we watched the sun set, or every stunning star-lit night with the river raging below as we fed a voracious wood stove in Patagonia, than a safe little apartment or house across from a hospital, or in congested city or town with emergency services at the end of a touch tone phone. We have our "druthers" and we like it.]

Next Day:

This post has received Greg's Stamp of Approval. I asked him to read it and let me know if it was okay to post it to my blog. He's come a long way from the guy who would rather someone thought he had a hangover, than let them know he had a seizure. I'm really proud of who he is, and how he plunges head-long into life.

Today is the other kind of day we have. The kind of day where yesterday is far away, and not even a memory...simply a fragmented, encapsulated event that doesn't define our lives. Today Greg is cutting up the downed tree out back. His chain saw buzzing, a little sun warming the frost on the ground, I will slip out the back door and take him a cup of coffee. We will sit on a log and look out onto the mountains and think how lucky we are.

Sometimes I wonder if adventure is something we do as a distraction from the Mystery, or because of it. It doesn't really matter why we are doing this adventure, just that we are.