Disability

When Seizures Take Your Independence

What does freedom mean when you have a disability that requires supervision?

“I don’t want to choose between your safety and your mental health,” my husband Dan said. “I hate it.”

We were sitting inside our car at a parking lot in Herndon, running errands before the holidays. I sat beside him, fuming. I was reminded of a similar conversation with my father years ago when I was a teenager. I didn’t expect that familiar rage to swell the way it did now, in my thirties, seven months after I gave birth to our daughter, Leela.

There was a choice, I wanted to tell him, but it involved risk. We married three years ago knowing fully well that my health was deteriorating. I had arthritis and cervical dystonia, two disabling diseases that limited my ability to walk or stand for long hours. But when I began having seizure-like episodes in late October, falling face-down on the floor several times a day, risk was not up for discussion. It’s not safe for you to be alone, a doctor told me. “You will need to make a lot of life changes.”

I didn’t expect that moment to change the way we lived but I could tell the dynamic of an otherwise egalitarian household was crumbling. As a dependent, I would now have to ask for approval and support to do the things I wanted; going for a walk or shopping on my own.

For the first time in a long time, I felt utterly helpless.

When Seizures Take Your Independence

Research around PNES—Psychogenic-Non-Epileptic-Seizures—is fraught with debate in the medical community. Although the attacks resemble epileptic seizures, they have no neurological underpinnings.I usually feel my mind wander, my brain feels foggy, and finally when I feel my body go limp, I fall and hit the floor. The slightest triggers could set off a bad day: loud noises, looking for my car keys, violence on TV.  Doctors believe that these seizures are psychiatric in nature, stemming from a prior history of trauma and abuse. Since I’d suffered from chronic pain, and had been sexually assaulted as a child, the hospital recommended that I see a therapist or a neuropsychiatrist.  

The first episodes took us by surprise. I collapsed twice at the doctor’s office, waking up to a crowd of concerned faces staring at me. The physicians at the ER were confused when they took my vitals; they suspected maternal depression. Weeks later, I spent three nights at a hospital in Fairfax linked to a video EEG machine only to have the on-call neurologist tell me that they could see nothing abnormal in my brain. I was sent home with a list of psychotherapists. 

“It’s not safe for you to walk all alone.” We argued. But ultimately I agreed it would be best, for now.

Dan and I decided that we would keep looking for an answer. But when I started to disassociate and fall in public, the anxiety began to wear us down. “Be by my side,” Dan would demand. “It’s not safe for you to walk all alone.” We argued. But ultimately I agreed it would be best, for now.

I’d always associated the word ‘Freedom’ with the idea of personal independence. Before we met, I’d spent nearly a decade living on my own in India, and then moving to the United Kingdom to finish a master’s degree. By 2015, when I moved to Washington DC to work at a non-profit, I’d already called ten different places home. I prided myself on my perseverance. Being dependent upon someone else wasn’t just embarrassing, it was invasive. 

But now, I had no choice. Within two months of my first symptoms, I’d had close to a hundred seizures–collapsing while looking for a book at 2nd and Charles, bruising the side of my face on the kitchen floor, and once, falling on the playmat right next to my infant daughter.

The Dangers Of Avoidance Coping

Yet my husband and I thought so differently about what should be done to manage my seizures. I’d adopted what psychologists call ‘avoidance coping’, because I thought that if I believed I was okay, I might be able to continue to live as I did. Treat me normally, I’d beg Dan. It makes me less anxious. And he, anxious for my safety, would fire back: What about me? You could hurt yourself!

The functioning word in our arguments was ‘could’. I wanted to take chances; he wasn’t willing to risk it.

The functioning word in our arguments was ‘could’. I wanted to take chances; he wasn’t willing to risk it. For two months, he accompanied me everywhere: knocking on the door when I showered, asking me to stay seated in the living room if he stepped out, monitoring me as I walked down the aisles in the supermarket looking for chips. I suggested that I could wear a medical bracelet that alerted him of falls. But he felt it wasn’t preventative. I even nodded reluctantly when he pointed to security cameras at Costco telling me that he could tune in to watch me on video in case I had a seizure at home in his absence.

“That way,” he said, “If you don’t wake up in five minutes, I know I need to get to you.”

What he didn’t understand was that I didn’t want him to get to me. To confront my disorder, I needed more than security: I needed my sanity. At the same time, though, he needed to know I was okay. Ultimately, we were at an impasse, feeding into each other’s constant anxieties. 

Compromise was inevitable. 

The Turning Point

A turning point came one day when we decided to meet a friend for brunch. When I sensed my body disassociate mid-conversation, I moved to the corner and leaned against the wall. Dan sat near me. The minute my head flipped, he caught me, and let me slump over his shoulder.

It showed both of us that this condition wasn’t entirely unpredictable: that there were ways to see episodes coming, and to intelligently mitigate the risks. From there, Dan found it a bit easier to give me a bit more room. We worked out an agreement, so that if I was home alone, I would stay in the living room area, so that if I had an episode, I would be in a safe, carpeted space. Next, we told our friends what to do if I had a seizure when they weren’t around. 

“Just in case—”

There was something liberating about letting people in. About saying out loud that something was wrong. And about working with my husband to make sense of this thing–together. 

At first, I was embarrassed, but there was something liberating about letting people in. About saying out loud that something was wrong. And about working with my husband to make sense of this thing–together. 

Months later, taking the advice of my therapist, Dan and I got away for the first time since Leela was born and went out on a date.  We drove down to Old Town Alexandria, and walked around the harbor, watching gulls. I felt my lungs expand and my breath soften. When we sat down for lunch at a Pizzeria, he stepped out to make a call. I ordered tea.

And suddenly, I felt that rush again: not of disassociation, but of freedom. I sat alone the way I used to years ago, without worry. I knew that if I fell, Dan would be there by my side in minutes—but that didn’t make me any less free.