Sometimes What Hurts Also Instructs

When I was eight years old I woke up with the left side of my face twitching, I was drooling and my left arm spasming uncontrollably. It was only the top half of my body, so I got out of bed and went to my mother’s room and tried to talk, but couldn’t get out the words to say what was going on. Mom dug for paper and pen in her dresser and handed it to me. On the paper I wrote, “I can’t stop this.”

That was my first seizure.

My mother saved the note.

I had many after that, but when I was about fourteen-years-old I stopped having them. I figured I’d grown out of them. I wouldn’t have my next seizure until I was twenty-one.

When I first lived in New York and graduated acting school, i couldn’t find work anywhere, and I applied everywhere, but everywhere I applied wanted experience I didn’t have. Plus, it was post 9/11 and New York was in an economic depression. I knew I loved New York and my mom knew she couldn’t afford to keep sending me money. She gave me one month, and then I had to come back home. So I got a job in one of the few industries actually thriving during that time, I got a job answering phones in an escort service.

To be honest when I first got the job, I really did think I was booking girls on dates. I’m from Colorado, I don’t know about these things. I just remembered this terrible wisdom a girl told me at school, “When in doubt, look to the back of the village voice.” That’s how I ended up working as a phone girl for an escort service, and after training for an hour on the phones it was clear that I was totally booking hookers. While most mothers would have flown to New York and taken me home, my mom thought it was the best story ever.

My Mom loved the show Cops, so this was like having a secret agent on the inside of the underbelly that makes up the fabric of our lives. She even included this tidbit in her Christmas newsletter that year. She told me it would be great in my biography when I’m famous one day. Which if I ever end up like Cody Diablo, who wrote the movie Juno and used to be a stripper, then, maybe. However, what I was doing was much less interesting work, I was in a long pink room for eleven hours talking on the phone, selling women to rich men on cocaine. Really, my side wasn’t very interesting, I just watched a lot of tv and collected money from the escorts, the girls had way better stories. I never gotta say, “Bitch better have my money or I’m gonna have to slap a hoe.” The escorts were actually lovely, some weren’t from this country and couldn’t find other work, some were paying for college, one was paying for private school for her kids. Honestly, work is work.

My biggest issue was, I didn’t have health care, I hadn’t needed it really except for… While at work, the unthinkable happened, I felt the room slow down…like a tape recorder when the batteries are dying, and I’m trying to make a sentence with a mouth full of marshmallows and I’ve forgotten what English is. Shit! This is an aura, which is a small seizure that’s often followed by a larger one. I couldn’t believe this was happening again. I’d been seizure free for so many years, and now found myself being escorted by three escorts to the emergency room. They were amazingly resourceful and taught me great tricks when you don’t have health care like: don’t give them any of your real information, if they can’t find you, they can’t send you a bill.

The owner, realizing that I was a liability to his business, because you can’t have the ambulance come up and find an escort service…let me go, but paid for me to see a doctor and get back on drugs as my severance package. To be honest, I was so relieved. While that job isn’t far off from what I do now, in fact it’s pretty much the same, but instead of selling hookers to rich people, I sell food to rich people. Also, this job is legal with benefits, stability and much less guilt.

However, there’s a lot of things I haven’t done because of fear of not having health care. As a grown up I haven’t had that many seizures, but I’ve also not taken as many chances as I would have to make sure I can take care of myself.

In many ways, a huge part of life is getting over the fact that we just have responsibilities and we can’t do everything we want. But we hold that against stupid memes telling us to take risks and follow our passions or we’re failures. It’s just impossible. A limited amount of people can do whatever they want, and very few of those people actually are grateful for having that luxury anyway and still want more.

So basically we need to embrace the obstacles and not feel the need to be perfect or expect that of others. It’s exhausting and impractical.

Cleanthes wrote, “The Fates guide the person who accepts them and hinders the person who resists them.”

Blessings come from obstacles. Ryan Holiday says, “Blessings and Burdens are not mutually exclusive. Within every obstacle is an opportunity to improve our condition. The obstacle in the path becomes the path.”

After having my seizure at work and getting back on my drugs, recently. I noticed something I didn’t notice before — for the period of time I had gotten off of my meds, I felt calmer than I had in years. I didn’t feel overly anxious all the time, I didn’t have mood swings as much. I felt like a normal person. Then when I got back on them, it all came back and I realized that maybe the drugs are making me feel like this. That’s a great feeling, but also a frustrating one when your options are limited and they all have side effects.

I spent the holidays with my best friend and his family, and I was chatting with his sister who’s a nurse and I was talking about different diets, or alternative things I could do that wouldn’t involve medication, because the side effects of the meds are just the worst. She said this, “before you can change anything, you need to just surrender to what’s going on now. Stop fighting it and just be okay with how things are. This is life sometimes. Don’t feel bad about these things. We all have them.”

It was the Oprah moment I’d been waiting for. Why was I being so hard on myself? Everyone has their own things, whether it’s money, weight, depression, parents, family, kids, illness, addiction, job, love.

“In life, it doesn’t matter what happens to you or where you came from. It matters what you do with what happens and what you’ve been given. And the only way you’ll do something spectacular is by using it all to your advantage.” Ryan Holiday

Then I realized that I had total control over how I perceived any given situation, while I can’t control it, I decide how I write the story. While I can’t control the epilepsy, and I know I need to take drugs. I choose to see the side effects of the meds as “cowardly men repellant.” Because like Marilyn Monroe famously said, “I’m selfish, impatient and a little insecure. I make mistakes, I am out of control and at times hard to handle. But if you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.”

That’s the perfect way to see it.

That made me think about famous. people with epilepsy, turns out that tons of brilliant people have epilepsy, and in a way, maybe because it effects my temporal lobe, which effects your hippocampus and amygdala (which control memory and emotional reactions, and is also where we associate feelings of love and fear) so it makes sense when you’re dealing with neuroscience and the brain — why the memory might get damaged, but the automatic amygdala response to stimulus and stress might be overly sensitive which is why we can be so hyper aware or intense, but then detached and aloof.

Maybe that’s why Charles Dickinson wrote such amazing love stores, or Aristotle could speak so well about the human condition. That’s one thing I’ve noticed in almost everyone I’ve ever met with epilepsy, they have amazing instincts, better than most anyone you’ll ever meet.

For the first time in a long time, I choose to own my story. I get it now. Stop running from fate. It’s my story, all of it, every juicy little funny and awkward morsel.

I think about my mom as I say this, she would wake up at 2am to the sounds of me banging on the wall. She would wake up and crawl in the bed and rock me back and forth, saying, “You’re okay.” And she would get two hours of sleep and be up at six am to go to a job she didn’t love, with a boss that was always antagonistic to my mom, even though my mom was the highest grossing sales rep for the entire post office, including New York. She would get two hours sleep, go to work, come home, make us dinner, deal with our crap, call us douche bags, dance at super markets, sing loudly to James Brown in the car, make us feel loved and cared for even though we didn’t always appreciate it and sometimes still don’t. She’s never let it show that she was stressed. She was always happy, silly, dancing and making the people around her feel good. Maybe that’s the best any of us can do, is be like that. Not deny what’s going on, but boldly and directly face the good, the bad and awkward and just be happy, laugh, dance, enjoy the people we love (even when they are being douche bag kids like we were sometimes) and make the best of whatever life throws at our way, which it will toss some serious shit at us, but it will also be fine.

Update: I wrote this five years ago, before the pandemic…which was some serious shit. I lost my secure job and my insurance, but I have a beautiful family, and we are all healthy and happy and I know in my heart of hearts…we’re going to be fine, because I’m a badass and we make it through shit…but when in doubt there’s always the back of the village voice.

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