One of the Purple People.
I don’t really like the color purple.
I know that’s not a super popular opinion, especially when I live in the land of Viking football and Purple Rain, but I’m not much of a fan of the color. I never have been, not even in my tween years when all my friends were obsessed with it.
Instead, I’ve always always loved green, the color of life and vitality and fresh growth, the color of new beginnings. Green is a color of hope and revival.
Purple, to me, has always been a color of sadness and endings--it is the color that the sky turns after the sun abandons the landscape. It’s the color of wine and overindulgence, of too much. It’s the color of battle, of ripe bruises and freshly healed scars.
So it’s fitting that this color, which represents such hardness and difficulty for me, is the color of the epilepsy awareness movement, a movement I am part of, whether I want to be or not.
It’s March 26.
It’s Purple Day, and I am one of the Purple People.
I only know a handful of epileptics personally: a student at the school where I used to teach, an old friend, my adopted daughter’s biological mother, and, most recently, one of my drama students.
I’ve had an almost instant connection with each of these people because we share something that others just can’t understand: the humiliation and helplessness that follow a seizure, the hijacking of any best-laid plans you made for your own life, the disappointment with the limitations that epilepsy presses upon you, the medications and side-effects, the ever-present fear of an episode.
Because of my epilepsy, I don’t teach anymore. But I did inherit the local school drama program from my dad, so I still get to work with kids.
One of those kids just happens to have epilepsy.
Last Saturday, her mom came up to me after practice and said, “Thank you. Thank you for showing my daughter that it is possible to live with epilepsy. Thank you for being an example to her, for showing her that she can still do things, that she doesn’t have to be limited by her disability.”
Her words stunned me.
During the last five years, I’ve endured a pretty major crisis of identity that has been a direct result of my epilepsy.
I had not considered myself to be any sort of role model. In fact, I was concerned that I had become the exact opposite, because I wasn’t “succeeding” in the way I thought I needed to be. I always assumed that when people looked at me, they only saw wasted potential. I assumed they would look at me and think, She could be doing so much more with her life. When I look at my own life, I think those things. And I when I do think those things, I get bitter and resentful and embarrassed and angry that my brain just can’t do what it used to do.
Inheriting that drama program was a gift: it was a way for me to work with kids without the full-time commitment of a teaching contract. But I had so often thought of it as my Plan B. I love it, but it isn’t teaching.
It’s Plan B.
But that woman’s daughter is watching me.
Her epileptic daughter is watching an epileptic director create, and there’s hope in that.
There is hope in watching someone navigate a terrifying terrain ahead of you, in watching them survive it.
She was right: I can still do things. Maybe not the same things in the same way I could before my diagnosis, but I can still do things.
I had never considered the possibility that kids who also struggled with epilepsy might be watching me and paying attention to the ways I manage this condition, looking to me for cues about how to live well with this disorder. These kids aren’t judging me. They aren’t looking at me and wondering why I haven’t done more with my life. They look at me and see hope.
“This has been really good for my daughter,” she told me.
And it has been good for me, too.
So today I wear purple for the scars and the bruises, for the overindulgence, for the sadness and the endings. I wear purple to remember and honor the past.
But tomorrow, I will wear green.
Our barn was a gorgeous thing.
People were always telling us so—it was rustic enough to suggest a rich history of agricultural use, yet elegant enough to serve as the backdrop for a sweet country wedding. And it did both: my sister got married in our yard, right in front of that barn, and it was stunning.
At least, it was if you were looking at the east side of the barn. If you looked at the west side of the barn, you’d see something completely different.
The west side of the barn was…well, it was pretty much gone.
The west wall was shielded from view by trees, but it was nothing more than a beautiful ruin, riddled with holes wide enough to walk through, and the west roof gaped in a way that let in the light of the setting sun so the whole hay loft glowed. It was too far gone to restore or repair, but from the east, the barn looked whole, so I liked to pretend that it was.
But a holey roof can only take so much before it gives way.
This winter has been a weight in so many ways, and I wasn’t surprised when I walked outside last week and saw that our beautiful barn had finally collapsed. The roof had caved in, laden as it was with Minnesota snow: a burden that had become too heavy for all of us to bear.
In a way, I understand the weight of such a burden.
I haven’t had a major seizure in quite a while. I hear it often: “You look so healthy! Are you better now?”
I never know how to respond to that, because...well, because it’s complicated.
I am not sure if I will ever be “better.” I do not think this problem will ever fully disappear.
What the world sees may look better. But hidden behind a body that seems whole is a crumbling infrastructure. I know there’s a hole there; I saw it on a terrifying MRI. The world can’t see it, can’t understand it, but I know it’s there, and I can feel the weight of the pressures applied to it, like a camel’s back laden with straw, just waiting to break.
So many aspects that affect my condition are outside of my control: I’ve learned that my seizures are triggered by poor sleep and high stress; that my migraines are triggered by barometric pressure changes, hormones, and hypoglycemia.
I can’t control these things.
The only thing I can control is my reaction to them.
To be honest, I was one of those people who thought that “Zen” was a completely ridiculous concept. Meditation sounded like a waste of time. Peace seemed like an impossibility.
Ask my husband: I (still) can’t even sit down to watch TV. I always have to have another thing going on. I’m cleaning or exercising or reading a book or folding laundry or making jewelry or drawing or making a list or something, because I have always tried to stuff as much activity as I possibly can into every hour that I have.
When I was diagnosed with epilepsy in 2012, I had so many external stressors that piled upon me like the weight of all that snow on my barn: At work, I was literally the entire high school English department. I had just lost my driver’s license. And a year before, I had received the crushing blow that having a biological family was not in the cards for us.
I was encouraged to slow down and grieve these things, but I did not.
Instead, I stuffed this all away and kept on doing.
Because I believed that my life did not have value if I was not constantly doing.
My doctor had advised against this. He told me to do less and sleep more. I saw other doctors, and they told me the same: Slow down. Do less. Just relax.
This is not what I wanted to hear.
The very idea of “doing less” threw me into a maelstrom of panic, because I believed that my worthiness as a human was intrinsically related to all of my doing. My mind went wild with fear: If I can’t teach/be a mom/drive a car/keep up with my housework all by myself, then I’ll need help, and I don’t accept help; I give it. If I can’t do those things by myself, then I’ll NEED, and I can’t NEED, because needfulness is tantamount to weakness, and I am far too productive to NEED.
Accepting help was like admitting defeat.
Because I literally had no other choice, I swallowed my pride and accepted the car rides when they were offered. The school board where I was working responded with compassion to my plight, and they allowed me to do less at work: I stepped down gradually, going from overload to full-time, then from three-quarter-time to half, and then the school hired me a permanent substitute on Mondays so I could make appointments and get rest. It was a generous act of compassion on their part, but it was also a humiliating staircase to descend.
Insanity is doing the same thing over and over, expecting different results. It took me more than five years to understand that trying to force fifty pounds of productivity into a two-pound brain was a form of insanity. Even trying to shove half that amount into my brain was insane. That push, that busy-ness was the opposite of productivity.
So, yes--I am doing "better," in a way. But I am only doing "better" so long as I am doing less.
I still have moments where I am pissed as hell that this happened to me.
I spent a lot of time being bitter and heartbroken about everything epilepsy has taken from me.
No, I take that back--I wasted a lot of time, and now that time is gone.
It is a tempting whirlpool of thought, and I am easily sucked into it. I am so often lured by the anthem of self-pity, the Siren song of “Why me?”
But there is absolutely nothing I can do to change that diagnosis except deal with it.
This is where the Zen comes in.
Zen is about surrendering to what you cannot change.
So while I cannot exactly scrape the pile of stress off of my life with a snow rake, I can do my part to hold up the crumbling roof from the inside.
This has involved making some pretty significant lifestyle changes, and I hate them. (Not gonna lie—I really do.) I wish I did not need them, but I know that I can take a dump in one hand and fill the other with all those wishes, and I know which one will fill up first.
I do these things, because I like being “better.”
So what does managing my epilepsy look like?
It means that I do my best to stay on a schedule that would make a kindergarten teacher proud.
It means going to therapy to work through my stressors.
It means carrying a giant purse with a veritable pharmacy inside of it with me everywhere I go.
It means toting snack bars around with me to combat the threat of hypoglycemia.
It means making sleep a true priority. (This was a huge change for me. I used to hate going to bed before midnight. But sleep is as important as medication in treating epilepsy, so I have made a commitment to at least trying to sleep, because I do not want to lose my driver’s license again.)
It means deep breathing exercises with names I can barely pronounce or spell: kumbhaka, ujjayi, simhasana.
It means getting up to do yoga at least five mornings a week, because…Zen.
It means cutting out coffee because it makes my nerves feel like they’re on fire. (I’ll occasionally sneak some decaf.)
It means erring on the side of caution in my social life. (This means that I rarely drink alcohol and am usually the first one to leave a party these days. I hate this, but since my diagnosis, I’ve learned the hard way that it’s an ugly necessity.)
It means carrying earplugs and hiding out in bathrooms to get away from noise and lights and people and sensory overload.
It means saying no to things that might overwhelm me, even when I want to scream YES. (This is the hardest one, and sometimes my husband has to do this for me. Case in point: I wanted to take surfing lessons in Costa Rica on the same day as another excursion we had planned, but he wouldn’t let me because he knew that it would have been too much for me. I was mad, but he was right.)
It means giving up the career I trained for and truly loved and taking on less work.
It means only operating at 60% capacity when I long to be back at 110%.
If I do these things, if I allow them to become my daily practice, then I stay “better.”
This Zen business has actually turned out to be pretty hard work. Surrendering to my limitations is something I am still learning to do. I still struggle with the idea that “better” is actually a compromise that I must make, a tradeoff that allows me to live a normal-ish life.
But it is a commitment I am willing to make to keep the broken roof of my life from caving in on me.