44: A Minor Inconvenience

44: A Minor Inconvenience

From Chicken Soup for the Soul: Tough Times, Tough People

A Minor Inconvenience

Bridges become frames for looking at the world around us.

~Bruce Jackson

Laura is driving and I’m in the passenger seat as we approach the Highway 8 Bridge. That familiar sense of dread washes over me. I feel my chest tighten as I try to breathe slowly and methodically. I look over at Laura. She must see how panic-stricken I feel. I want to get out of the car, run as fast as I can to escape this fear that warns me I’m about to be carried off to that other world again.

“Mom... are... you... all... right?” Laura’s voice sounds too deep. Her long drawn-out words echo as if they’re coming from the far end of a cave. And her face looks distorted, as though I’m watching her underwater. She looks like she’s swimming toward me, trying to rescue me from this drowning sensation as she reaches over to take my hand off the car door handle. Like a puppet, I watch her guide my hand to my lap.

“I’m fine. Don’t worry about me. Watch the road.” I try to say. But all these words stick in my throat, refusing to pass over my tongue.

I want to flee from this moment and get on with my life.

By the time it’s over, we have crossed the bridge and are on the freeway. I take a deep breath and lean back against the headrest.

“Are you okay now?” Laura’s voice sounds normal again.

I nod. Keeping my eyes closed, I take inventory of my surroundings. I’m riding in the car. Laura is driving. We’re going to the mall, her second home. I live in Chisago City now, not Lindstrom. We moved fifteen years ago. Todd is working from home today. Jenny is in college now. My seizures have returned. Collecting these fragments of information, I gradually reassemble the pieces of my life.

“What did I do?” I ask, as I open my eyes and look at her. I always ask.

Frowning, she assesses my condition with furrowed brow. I remember that she wants to be a nurse.

“You were moving your feet a lot. I thought my driving was upsetting you.”

“It probably was,” I tease. “I’m sure I was telling you to slow down.” I smile and she laughs. “Did I say anything? I was trying to tell you that I was okay.”

In the thirty seconds it took to cross that bridge, the seizure leaves me feeling as exhausted as a marathon swimmer who just completed her final lap and stands at the edge of the pool trying to catch her breath.

“No, you didn’t make any noise. Why don’t you rest for a while?”

“Then who would tell you how to drive?” I say, as I close my eyes and let my body go limp.

I’m relieved that we were in the car when this happened and not in a public place. My seizures are usually mild, and they come and go so quickly that most people, even my family, rarely notice that I’ve had one. But I worry about whether my behavior during my next seizure will cause strangers to question my intelligence because they’ve witnessed thirty seconds of erratic behavior. I’ve had too many embarrassing moments.

I wrote about my bridge experience for a class assignment. A woman came up to me later and thanked me for sharing it. Her husband had seizures but never talked about it. Hearing about my experience helped her understand what he went through. I understood her husband’s reluctance to talk about epilepsy. People’s misperceptions of the disorder can be more debilitating than the condition. But hearing her words of gratitude made me wonder if it was time for me to speak out.

When my husband’s coworker learned I have epilepsy, he asked if I’d be willing to talk to him and his wife about my experience. Their eight-year-old had epilepsy, and getting the seizures under control was a challenge.

My heart went out to them. I remember what it was like to deal with seizures at that age. During a time when wearing the wrong color shoelaces can summon the ridicule of your peers, having seizures in school can be off the charts on the humiliation scale. Of course I would talk to them. I didn’t know what I could say to help them, except that they weren’t alone.

Growing up, my parents treated my epilepsy as they would any other daily routine. Morning conversation included: Did you brush your teeth? Did you take your medicine? Dinner conversations included: How was your day? What did you learn about? Did you have any seizures? Please pass the potatoes.

It was a part of our lives, but not the only part. I’m grateful for my family’s acceptance of epilepsy as a minor inconvenience, something to be worked around. Not everyone sees it that way.

I’m told that my doctor was more upset about telling my parents I had epilepsy than they were at learning it. They were grateful for a diagnosis that explained what seemed like inattentiveness and excessive daydreaming; and that there was medicine to treat it.

Unlike diabetes or high blood pressure, epilepsy is not a popular disorder. As old as it is, it’s still misunderstood. For many, there’s still a stigma attached to having epilepsy. Children still taunt those who are different. Some kids who don’t understand what a seizure is, or why it happens, grow into adults and employers who continue to have misconceptions about seizures and the people who have them.

People with the best of intentions have suggested that I might be possessed and have offered to exorcise any demons that might be controlling me.

Others who don’t know I have epilepsy have questioned the intelligence of people who have seizures or whether they should have children. Until now, I never pointed out that I have managed to raise two healthy daughters and complete four years of college in spite of a seizure disorder.

My life has been occasionally interrupted by seizures and I’ve been inconvenienced by them along with the trial-and-error process of finding the right medication. While I’m mildly affected by epilepsy, today it’s really no big deal. I’m more open about my epilepsy now—with individuals, families, even my state representative.

Just as my class assignment described my experience on a bridge, I want to help build the bridge that will lead to a better understanding of epilepsy. I want to encourage those who are still struggling, advocate for those for whom seizures are still a major hurdle, and effect new laws that could help them transform a major distraction in their lives into a minor inconvenience.

~Tracy Gulliver

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