Recently, while getting ready for my first date after a long-term relationship dissolved, I felt nervous in a way that I imagine most other people do: I left clothes strewn on my bedroom floor in my hunt for the perfect outfit and wondered if my date would be as easy to talk to in real life as he had been online. Clad in a jean skirt and black T-shirt, berry shade of balm swiped on my lips, I allowed myself to feel a trill of excitement before a deeper fear reared its head: What if I had a neurological episode while out with someone new?
The first time I experienced an episode, I was 18 years old, and I was a Division I cross country athlete in college at the time. I was used to being in complete control over the ways I moved through the world. At 5 feet, 11 inches tall, I was capable of hitting quick splits during workouts and sustaining a pace over high volumes of weekly miles. I felt powerful. But then I fainted one night in my dormitory, and again only two days later at an indoor track meet. When I regained consciousness, the world spun around me in a vertigo that persisted for weeks. Though doctors told me I had a temporary condition called vestibular neuritis, one that was supposed to dissipate after just over a month, my symptoms instead grew stranger.
One night, when my roommate asked me a question, I began to repeat my own name, “Hey, Jackie, hey, Jackie, Jackie, Jackie,” instead of saying what I had intended. In the weeks that followed, my episodes, as they evolved to affect my speech, became terrifying. In addition to experiencing blurred vision, loss of control over my limbs and aphasia (repetition of words), I also lost the ability to remember what had happened while I was symptomatic. I could be anywhere –– safely seated at my dormitory desk doing homework, in class in front of peers who did not know about my declining health, or midstride during a run Coach insisted I try ― and I’d wake up not knowing where I was or what had happened to me during the time I was episodic.
At first, believing I would soon return to health as the doctors had told me, I lied to my family, who lived halfway across the U.S., telling them I was fine. Instead of reaching out to them for support, I consoled myself with the tenderness of my teammates and boyfriend at the time. They carried me to my dormitory bed when my legs weakened from under me, drove me to doctor’s appointments and promised me that soon I would return to the track where I belonged.
But somewhere along the way, their care turned cruel. While I was vulnerable, incapacitated by repetitive speech, incapable of walking on my own and unable to remember events, my teammates and boyfriend at the time began to play tricks on me. They would sometimes tell me spiders were crawling up my back so I’d take off my shirt, or that my dog died, which, as my roommate would tell me after the events, made me weep. Having never been seriously ill before this experience, I somehow viewed their treatment of me as warranted; I thought my symptoms were a burden.
While I was vulnerable, incapacitated by repetitive speech, incapable of walking on my own and unable to remember events, my teammates and boyfriend at the time began to play tricks on me.
Unable to compete because of lingering symptoms, I quit the team later that year. In doing so, my friendships with teammates, my identity as a Division I athlete, my relationship with my college boyfriend and years of my hard-won muscle all melted away. Without running, I had to reconceive how I moved through the world. And without my teammates, I had to navigate a new landscape of chronic illness: Whom would I disclose my symptoms to? How would I make it home from class if I had an episode? And whom — if anyone — could I trust to care for me without inflicting emotional pain?
In the years that followed my initial episode, my symptoms, closely monitored by neurologists, appeared less frequently but did not completely disappear. My symptoms were classified by neurologists as seizure disorder, migraine variant, and transient alteration of awareness. I still held fear that I would be taken advantage of again if ever I were around other people when I had an episode. Because of this, I did not date. For many years, I stayed in my apartment most of the time, only leaving for class or to meet with trusted friends. I told myself I was happiest without a romantic partner so many times I began to believe it. In reality, I was terrified of being close enough for someone to hurt me ― both physically and emotionally.
This began to change four years ago when I moved to Oklahoma for a Ph.D. program. Every so often after class, I walked with a fellow graduate student to the parking garage. We talked about our mutual appreciation for the outdoors, how many different places we lived while growing up, and our obsession with books. With him, my chest didn’t tighten up the way it did around other men.
One weekend, we ended up going hiking together, and it was the beginning of a comfortable kind of love ― one that involved long afternoons playing board games, making dinners in his apartment and laughing as his cat launched himself haphazardly in the air after a toy. With him, for the first time in my life, I felt a desire to disclose my symptoms. I told him about my episodes on one of our walks to the parking garage, the Oklahoma sun holding us in its light.
I told myself I was happiest without a romantic partner so many times I began to believe it. In reality, I was terrified of being close enough for someone to hurt me — both physically and emotionally.
“Are you scared?” I asked, after I told him about how I might, at any moment, shift from being articulate and cheerful to incapable of forming a sentence, eyes vacant. Part of me —?the part that had been hurt so many years before — wanted him to leave me at that moment. But another part, a more tender part of me that I’d tried to suppress for so long, wanted him to love me in spite of what he might fear.
“Not at all,” he said. In that moment, I wanted to trust the care in his green eyes, but I didn’t. My former teammates had taught me how care could quickly turn to harm.
Not too many nights later, though, curled up beside my boyfriend on the couch, the television blurred out of focus and my mouth opened and closed without sound; as much as I wanted to articulate, “I don’t feel well,” I had lost the capacity for language. I don’t remember anything else of the episode but when I woke up later on the couch, he was sitting on the floor by my side, his face flooded with concern. He asked consent before running his fingers along my forehead, brought me a glass of water, and he took me home when he was sure I would be OK.
In the episodes that followed during our first year together, I often snapped at him to find someone else, a girlfriend who had no health issues. I doubted the fact that he could love me — really love me — after he had seen me incoherent during an episode. Looking back, my inability to receive his care was really a manifestation of an anger toward the failings of my own body and my belief that I was a burden rather than a joy to be with. It took time, therapy, and my boyfriend’s persistent, patient affection, for me to soften. As much as I learned to love and be loved by him during our time together, I also learned to love myself.
Looking back, my inability to receive his care was really a manifestation of an anger toward the failings of my own body and my belief that I was a burden rather than a joy to be with.
During the span of our relationship, I hadn’t always been the best about asking for what I wanted. Because of my episodes, I refused to look at many of the ways I contributed to the relationship — making dinners most nights, painting tiny watercolor love notes, planning trips to national parks, caring for my boyfriend’s cat as if he were my own — and instead dwelled on the ways I might be “too much” for my boyfriend to handle. When he didn’t give me flowers or plan any dates despite me telling him how happy they would make me, I chalked it up to the fact that being in a relationship with me took more energy than it would for him to date another woman, and told myself I didn’t deserve anything besides what he was already providing.
But during our last year together, when my boyfriend moved 1,000 miles away for his first job while I stayed in Oklahoma to finish my degree, I was forced to reckon with my self-worth. So much of my wanting was colored by what I thought would be easiest for him rather than by me expressing what I truly desired: a partner who would not only love me in illness, but in health too.?As much as I loved him, and as much as I was — and still am — grateful for the ways he cared for me, I began to realize I also deserved more.
We ended things, and I moved 1,000 miles farther away, to an apartment we had once planned to share. In a town where no one knew to press their hand against my forehead to ease the pain of an episode or get me to bed so I might sleep away symptoms, old fears emerged: What if I collapsed while walking down the street and someone took advantage of me? What if I went on a date and started repeating something nonsensical?
I am dating still, moving through the world in all of my vulnerability, with trust in the capacity for love that I hold.
I have not given in to my fear as I did years ago. Alone, making my way to my first date after the breakup, the parking lot shimmered with heat, my heart fluttered in my chest, and I felt buoyant with a kind of self-love that had taken me years to learn. But by even showing up to the date, confident in myself and open to new people, I realized I was no longer letting myself be defined by my neurological illness, but turning to face joy instead. And though we didn’t see each other for very long after, when I sat down at the table, the man was warm and kind.
In the dates since that first one, I have felt empowered about how and when I disclose my condition. I take precautions such as telling friends whom I’m meeting up with or where I’ll be to ensure that I remain safe, but I remain open to connection. Different men have made dinner reservations, brought cool slices of watermelon for us to share at a nearby creek, and made me dinner from scratch in my own kitchen. One even brought me half a dozen cookies back from his trip to the beach, saying he’d thought of me when he saw them.
Most recently, someone asked how he could best care for me should an episode happen, and I trusted him enough to share; I feel safe with him, which is something I feared I would never find again after breaking up with my ex. During this season, each person’s delight in taking initiative to plan outings and their thoughtfulness, even while we’re casually seeing each other, has reassured me of the truth I’ve tried to tell myself all along: With or without illness, I am deserving of acts of care. I am dating still, moving through the world in all of my vulnerability, with trust in the capacity for love that I hold.
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