Kayli Carter: ‘I Got a Pacemaker at 18’

When you X-ray my chest, it looks as though there’s a first-generation iPod in my right breast, a pair of leads stretching toward my heart. The pacemaker I had inserted when I was 18 saved my life, and left me with a cyborg body.

I’ll back up for context. I had my first seizure when I was eight, and for the next 10 years, I was operating under the impression that I was just one of many people living with epilepsy. And for the most part, it was manageable. Until it wasn’t. After high school I moved to Savannah to study acting. I was thriving, feeling the boundless freedom of being an adult in training, and treating my body, well, like a college freshman living in a city with open-container laws. I felt invincible, and no one could tell me otherwise.

The truth was I was having multiple seizures a day, ranging from a 30-second loss of consciousness to a full grand mal seizure lasting several minutes. Some weeks I would be okay, but always waiting for the other shoe to drop. I was also experiencing chest tightness, and keeping it a secret from friends and professors. Several rehearsals ended with my finding an empty, dark classroom to hide from anyone who might see me as less than capable.

I wanted to be an actor, not an 18-year-old whose body was failing her.

I thought that if anyone found out about my chronic illness, that it would become my identity, the first thing people would see. I was gripped with fear, not only of the daily pain and brain trauma of having multiple seizures, but also from the deep sense of shame. I wanted to be an actor, not an 18-year-old whose body was failing her. Why couldn’t my body be invincible? Why did it feel like the enemy?

The shame made it hard to seek help—I wanted to deny my medical reality, to be a regular invincible college student, rather than face the fact that something was obviously, seriously, wrong. But when I did try to get help, I hit roadblocks. Because my appearance was that of a perfectly well 18-year-old, my chronic illness was greeted with skepticism, by doctors who didn’t know my medical history, or assumed, much like I did at the time, that my diagnosis was consistent with epilepsy. I was told that what I was experiencing was “anxiety,” “school stress,” and “unrelated to seizures, entirely.” On more than one occasion I was accused in emergency rooms of seeking pain medication, after having chest pain so intense that I couldn’t sleep or go to class.

I’m also guilty of employing the most untrue two-word statement in history: “I’m fine.” My right arm could be no longer attached to my body, and I’d probably tell you I was fine. Studies have pointed to the fact that women have a harder time advocating for themselves medically and are more likely to be turned away. The statistics are shamefully more grim for women of color. So when doctors were asking me for the frequency or severity of my symptoms, I would downplay the pain or suggest that it was manageable.

It all came to a head when I went home for spring break. I was unable to hide my worsening health from my parents, and my mother insisted upon taking me to the E.R. The doctors kept me for observation, and I wound up in a neurology unit for a week so they could monitor the seizures. Halfway through the week one of my best friends came to stay the night with me so my terrified parents could get some rest. She was in her first few years in the pursuit of a doctorate in physical therapy, and armed only with a few prerequisite anatomy classes, she noticed something no doctor or nurse had thus far: Every time I stood up, my blood pressure plummeted.

Sitting in a doctor’s office is a vulnerable place to be. We trust the medical experts to be just that—experts. They are the detectives in the room. It’s hard to remember that you and the people who love you best are also experts. Experts on you. It’s hard, especially as an 18-year-old, to speak up or push back when you feel you aren’t being heard. But it’s important. Because my best friend noticed that small detail, doctors performed a tilt table test, which is a means of tracking how your blood pressure and heart rate respond to gravity. As soon as I reached standing, my blood pressure bottomed out, I lost consciousness, and my heart stopped for over a minute.

Invincibility? Gone.

The diagnosis was neurocardiogenic syncope. Put simply, my blood pressure was abnormally low and there wasn’t always enough flow to both my heart and my brain. Since my heart took precedence, my brain would go without, causing the seizures. Doctors told me I would need a pacemaker.

Even then, in my teen arrogance, I thought I could go back to school as if nothing happened and put the surgery off until the end of the semester. I was told quickly that was not an option and presented with medical directives to sign for a surgery to be scheduled immediately. Staring at a medical directive form with instructions for what life-preserving procedures I’d be on board with in the event that something in surgery went awry was a black-and-white wake-up call to how I’d been taking for granted my one and only body.

It takes most people a long time to love their body, and I was no exception. I had a pretty tumultuous relationship with mine prior to a device being implanted in my chest. Through most of my adolescence, I didn’t love what I saw in the mirror, and wanted control through unhealthy coping mechanisms and an unhealthy rapport with food. For years the seizures and chest pain felt like a personal failing—like my medical issues were a sign that my body was hopelessly flawed. Suddenly my body wasn’t something I was at war with; it was something that I wanted to protect at all costs.

Now my body works hard and is in better shape than ever. B.P. (before pacemaker), I skipped every physical activity I could because I would be dizzy from what I now know was my blood pressure bottoming out. Now my body can do 19-hour days on a film set and eight shows a week onstage, and has done a 10-mile hike in the Grand Canyon. My friend is an exercise instructor, and when we go to stretch after a workout, he gives gratitude to his body; he says, “Thank you.” I wish I had seen my body that way all along. But now I’m glad that I do. I trace the scar underneath my right breast sometimes after I shower, a gentle reminder of my impermanence, of my being alive, and feel gratitude.

The biggest perspective change of all is my ability to ask for help—and accept it. To know that white-knuckling it through pain isn’t something to be proud of and that strength is in vulnerability. Our existence is not guaranteed, and I’m glad I came to that realization when I did. Now I have so much more time to enjoy this one body I was given—even if it is battery-operated.

Kayli Carter is a writer and actor and will next be starring in the upcoming television series Mrs. America for FX on Hulu. She also stars opposite Hugh Jackman and Alison Janney in the HBO feature film Bad Education.

Originally Appeared on Glamour