Ten years ago today I was suffering from terrible pain. I thought I had developed intractable migraines, which I probably had, but with a twist: seizures.
I experienced various types of simple seizures throughout my life without understanding them. I was told by a psychiatrist, without the benefit of a neurological exam or even an in-depth psychological evaluation, that I was hysterical. Because of this pronouncement, I experienced a great deal of shame and did not offer a full medical history when seeing doctors about my migraines. I kept things under wraps until ten years ago when the dam broke and all the pain, hallucinations and partial seizures took hold of my life with a vengeance.
It’s been a long ten years in many respects, and now I choose, because each of us can, to see myself as the hero of my own story.
When I think of heroes, I think of Odysseus, the Greek hero of the Trojan War who experienced a fantastic ten year journey when he left Troy to return to his native Ithaca, Greece. I was raised on the Odyssey so I know him. I like him. Odysseus is not your average superhero. His success comes not from being powerful or brave, unlike the superheroes of today, but from being clever and resourceful.
If I were to compare my ten year journey to his, I would start with the resourceful bit. I have a lot of resources, particularly the Internet. Am I clever? Well, my college classes taught me to evaluate and understand statistical studies and to separate opinions from facts. So yes, I would consider myself somewhat clever and certainly resourceful, like Odysseus.
He and I have a lot in common. The initial emergence of epilepsy into my life was like being attacked from all sides. It was my Trojan War. There was a great deal of pain; hallucinations that I recognized as hallucinations; hallucinations that I thought were real; partial seizures where I lost consciousness for a moment; nausea; muscle pain; fear; a lot more fear; anxiety; insomnia; generalized seizures; personality changes.
This was a war my mind perpetrated on my body.
I felt like I was at war with myself.
At first I thought my war ended with the diagnosis and the administration of medication. I was like Odysseus in this misunderstanding. We thought we had won and it was downhill coasting from there. Neither of us realized the most challenging parts of our lives were coming.
As Odysseus attempted to sail home with his full complement of soldiers, he encounters situation after situation that test him and his resourcefulness. His first stop was on the island of the Lotus Eaters who gave a drug, the lotus leaves, to his men, leaving them stoned and unwilling to move or work to get home.
Once he got them out of drug haze and back on the boat, he stopped on the island of the Cyclops for water where the single-eyed monster took him captive, ate a few of his men, and caused a lot of problems as the group escaped.
Aeolus gave Odysseus a bag of winds to blow them home, but his men opened the bag at the wrong time and blew them all off course.
On the island of Aeaea he met the dangerous goddess Circe who gave his men a potion that turned them into beasts, literally. It took Odysseus a year to work that one around to his advantage before he returned his men into human form and got back on the boats.
Next comes the land of the Laestrygonians, who happen to be cannibals. Only Odysseus and the men in his boat escape them.
His fighting force from Ithaca is now reduced to a single boat. He journeys to the land of the dead and has a few heart-to-hearts with various key individuals in his life before the gods allow him to move on.
After this, he is immediately put in the path of the Sirens, creatures who sing sailors to their death on rocky shores because their pull is so irresistible. Here he plugs up the ears of his crew with wax, but ties himself to the mast so he can hear their song. His intellectual curiosity is satisfied, he’s a little crazy by this time, but he is safe.
Still losing men along the way, Odysseus must sail between Scylla, a six headed monster who swallows sailors as they attempt to sail past, and Charybdis, a tremendous whirlpool.
Then his boat stops at the Island of Thrinacia, the land of the sun god Hellos. It is Hellos’ cattle that graze there and everyone is forbidden to touch them. Of course our hero cannot control his men, who all die after eating steak for dinner.
With his men dead and ship destroyed by Hellos, Odysseus is stranded on an island with Calypso, a witch, although an attractive one, for seven years. Calypso is eventually convinced to release him to the King of Phaeacia who equips him to return home.
When Odysseus gets to Ithaca ,he finds his palace overrun with slimy suiters trying to marry his wife and murder his son. He is a stranger in his own home and at first no good to his family. He must once again use his resources to break free of the bad, confining situations and to reunite with his beloved wife and son. His wife Penelope has been waiting for him all these years and is ready to resume their life together. We leave Odysseus successful at last after his ten year journey.
So if you have stuck with me this long, you may have some idea why I compare my odyssey with Odysseus’s.
I start my journey after the “war” on my body with doctors who prescribed a variety of drugs. And like Odysseus’s crew on the Island of the Lotus Eaters, I soon fall into addiction. I had to forcefully withdraw from most of the drugs to move on, to improve.
The Cyclops reminds me of some of my medical treatment. I felt like my doctors were not really seeing me or understanding my condition. I barely escaped with my life a few times, quite literally.
Often well-meaning research has “blown” me completely off the path and made my journey more difficult. I encountered the dangerous goddess Circe and was turned into a beast with some of the anticonvulsants that triggered rage and suicidal impulses.
Along the way I have lost men. By this I mean the soldiers we all have that shore us up and keep us going. They are personal and professional successes, talents, abilities, income, friends, family, job, self-esteem and self-worth (those wonderful twins), and anything else you can name that truly impacts your life.
I have been to the land of the dead to have conversations with those I lost in an attempt to understand where my life was going. Yes, technically I was having seizures at the time, but that doesn’t change the need for the answers.
I continually heard the Siren’s song. It told me that if I were to take the drugs and the painkillers I would be better, happier and all problems would cease. Oh, and they said I could smoke and drink Vodka too.
I sailed between the monster of lapsing into permanent illness and the whirlpool of becoming so caught up in my research that I lost sight of myself as a person.
I have had doctors destroy all that I built up as they act like the sun god Hellos, not wanting me to wander into their territory no matter how hungry I was for answers.
I have felt the stalemate of life passing with no purpose, no matter how easy it looked from the outside. Calypso seduced me into a level of numbness for a while.
Like Odysseus, I finally made it home to find my palace in confusion and realizing I must fight my way back into my family’s life and heart. Odysseus does this with a giant bow, a weapon associated with the heart. He also took the disguise of a beggar. I did as well. I had to humble myself to understand how I was going to weave my family back into a whole piece after my illness had almost destroyed it.
In the end, Odysseus found his way back to Penelope. Here, the character actually means two things to me. First, I see my husband as Penelope, never giving up despite falling into depression. When I finally came home I was accepted as was Odysseus. I also see Penelope as the healthy part of me that has been waiting through the last ten years to surface. “I was here all along” she says, “waiting to step back into you with the knowledge that you will be OK”.
And I am. I am the hero of my own story. So are all of you.