This morning, after some meditation, the book I have been feeling .. and some of you have suggested I write … arrived. Such a wonderful feeling to be in flow with God, creating. Each step, each word I write, feels guided. Even my nudge to research epilepsy and spirituality this morning yielded an NPR interview about this with … Teal’s neurologist! The path is clear.
And so I am putting out a chunk of what I’m writing as I go, just to get your impressions. Here begins ‘Tales from the Afterlife: How My Daughter’s Death Was My Rebirth.”
On a cool August night in San Francisco, an hour after I gave her a hug goodbye in a North Beach restaurant, my daughter Teal died.
For the first time.
Teal went into cardiac arrest in the locked bathroom of her apartment, collapsing into the empty bathtub beside her. Her roommate Adam, a bartender and aspiring writer, was in his bedroom with his headphones on, listening to music. He was barely aware Teal had come home.
Fifteen to twenty minutes later he attempted to use the bathroom, found the light on, the door locked, and no response. In the minutes that followed he deliberated about what to do next.
Was this an emergency … or not? Should he break the door down? What if she just needed to be alone for personal reasons and so she wasn’t answering?
He tried phoning Teal but her cell phone ringer was off.
They’d only occupied the same apartment for a few months, and he really didn’t know her that well. Should he try to intervene? Back and forth Adam went in his mind until finally, some moments later, he jimmied the door open and found Teal sprawled in the tub.
The EMT’s came within four minutes and managed to revive her heart. What had happened exactly was unclear. There was no sign of any alcohol or drugs. She clearly hadn’t tried to take her own life.
At age 22, Teal had simply … died.
What none of them realized was that Teal was an epileptic; it was a personal fact she was loathe to share with housemates and friends. Her epilepsy was an embarrassing truth to Teal, and she was very careful about who got to know this.
Teal had a moderate case of epilepsy — her seizures were well controlled with a variety of drugs. She’d only had a handful of seizures – in a restaurant while waitressing, on a beach in Ghana, once while taking a shower, the morning after her junior prom.
Her condition simply meant she had to be very careful with sleep and alcohol consumption, take her meds, and stay out of high-stress situations. It also meant she lived her life with a secret that at times galled her and frustrated her.
Yet in the last year of her life, Teal’s epilepsy also became her salvation.
The drugs she took for this condition, Lamotrigine and Zonisimide, were an intense, brain-slowing stew that kept her from going into the overdrive that created seizures. Yet they also produced anxiety and panic attacks. And, though we didn’t realize it at the time, taking multiple drugs of this type put her at an increased risk for something called SUDEP.
SUDEP stands for Sudden Death in Epilepsy. It is a little understood, rare phenomenon in which a small percentage of epileptics simply collapse and die like Teal did. It’s classified as a sudden and unexpected death by an epileptic in which a clear cause is absent.
One in 3000 epileptics dies this way, almost all of them alone.
The night before she collapsed, Teal called me. I was in the swirl of preparing for some dinner guests. “I can only talk for a minute,” I told her. “No, Mom,” she replied. “You need to listen to me now.” There was an urgency in her voice I seldom heard, so I did what mothers do – I forgot about the rest of life and I focused on my child.
She described the last three or four day as ‘not good’. “I think I’m going to have a really big seizure,” she told me. But when I suggested we find a neurologist right away, she demurred. “They’re just going to want to change my drugs – and I like them,” she protested.
This magic combo were the first she’d found in her six years since diagnosis that made her feel like she had in the old days, before her first seizure. She wasn’t lost in a fog, eating compulsively, or unable to track conversations. She could remember things more easily, and she felt her old energy again.
But more importantly, she felt a closer connection to God.
In fact, Teal had decided her condition had been given to her so she could access her spirituality. After a seizure in 2010, she found her way to Omega, a spiritual center in Massachusetts where her father was studying.
There she found women who taught her about prayer and meditation, goddesses and belly dancing. There she also bought her beloved Goddess Cards, and began the path that led her to her next significant spiritual milestone –this one in a hostel in Morocco.
The connection between epilepsy and spirituality is strong – it is said that epileptics have a thinner than usual veil between them and the other side. Indeed, no less than the original doctor, Hippocrates, wrote a text about epilepsy calling it ‘The Sacred Disease’.
…. To be continued.