I suffer from serious neurological disorders, That's what my love life looks like - The360 Lifestyle

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  • Sunday, December 1, 2019

    I suffer from serious neurological disorders, That's what my love life looks like

    I suffer from serious neurological disorders, That's what my love life looks like

    For a long time, I was convinced that my presence was more of a burden than a source of joy. 

    Not long ago, getting ready for my first date since the end of a long relationship, I was nervous (like, I guess, most people). After looking for the perfect outfit, I left clothes scattered around my room, wondering if it would be as easy to chat with my date in real life as it was online. I donned a denim skirt and a black T-shirt, then applied a touch of cherry lip balm, and I allowed myself to feel a surge of excitement, before a deeper fear took hold of me: what if I had a crisis in full appointment with a stranger?

    The first time it happened to me, I was 18 years old. At the time, I was a cross-country first division athlete in college. I was used to moving around the world with perfect mastery. As I am 1m55 tall, I could run short distances very quickly in training and keep pace over a large number of kilometers per week. I felt strong. And then, one day, I fainted in my room of the university city. And it happened again two days later, during a track and field competition. When I regained consciousness, everything revolved around me, and I kept this feeling of vertigo for weeks. Although the doctors told me that I had a transient condition, vestibular neuritis, which was supposed to disappear after a little over a month, my symptoms became more and more bizarre.

    One night, while my roommate was asking me a question, instead of answering what I expected, I started to repeat my own name: "Hey, Jackie, hey, Jackie, Jackie, Jackie." The following weeks, my fits, which affected my speech, have become terrifying. I had vision problems, I could not control my limbs and I had aphasia (repetition of words), but I also lost the ability to remember what had happened while I was presenting these symptoms. It could be anywhere: in my room, in my office, in class (in front of my classmates who did not know everything about my declining health) or during a race that my coach wanted me to participate in. When I came to my senses, I did not know where I was or what had happened during my crisis.

    At first, believing that I would soon recover health (as the doctors told me), I lied to my family, who lived on the other side of the country, telling them I was fine. Instead of calling them to support me, I relied on the kindness of my teammates and my boyfriend at the time. They carried me to my bed when my legs sagged under my weight, accompanied me to my doctor's appointments, and promised me that I would soon be back on the road to competition.

    But, little by little, their solicitude began to turn to cruelty. When I was vulnerable, paralyzed by repetitive language, unable to walk alone or remember events, my teammates and my boyfriend started playing dirty tricks on me. They told me that I had spiders on my back to take off my T-shirt, or that my dog ​​was dead, which made me cry, as my roommate told me after the fact. Having never been seriously ill until then, I considered that the way they treated me was justified. I saw my symptoms as a burden.

    As my symptoms persisted, I was unable to compete. So I ended up leaving the team. In doing so, my friendship with my teammates, my identity as a top division athlete, my relationship with my boyfriend and my muscles, hard won at the cost of years of training, flew away. Private running, I had to reconsider my way of moving in the world. Without my teammates, I had to adapt to a new world of chronic illness: who would I talk to about my symptoms? How would I get home if I had a crisis in the classroom? And who could I trust to take care of myself without making me suffer emotionally?

    In the years following my first attack, my symptoms, which neurologists were watching closely, became less common, but they did not completely disappear. My doctors classified them according to the following categories: convulsive disorder, migraine variant and temporary alteration of consciousness. I was always afraid that I would take advantage of myself if I were in the company of others during a crisis. For this reason, I did not go to men. For years, I spent most of my time locked up in my apartment: I only went out to go to class or to see friends of confidence. I repeated so often that I was happier alone that I started to believe it. In fact, I was terrified of letting someone come near me, lest this person hurt me physically and emotionally.

    Things started to change four years ago when I moved to Oklahoma for my Ph.D. From time to time, after class, I walked to the parking lot with one of my classmates. We talked about our common love for nature, the different places we had lived in our lives, and our obsession with reading. When I was with him, my chest did not clasp like it did in the presence of other men.

    One weekend, we ended up hiking both, and this marked the beginning of a reassuring love story, made of long afternoons playing board games, preparing to dine in his apartment and laugh seeing his cat make funny jumps to catch a toy. With him, for the first time in my life, I felt the desire to talk about my symptoms. I told him about my seizures one evening, while we went to the parking lot, bathed in sunshine.

    "Are you scared?" I asked her, after telling her that I could stop being jovial and express myself properly at any moment, suddenly becoming unable to form a sentence, empty-eyed. Part of me - the one who had been hurt years ago - was hoping he would leave me right off the bat. But another, the most tender, whom I had tried to repress for so long, wanted him to love me despite his possible fears.

    "Not at all," he replied. At that moment, I had only one desire: to trust the solicitude I saw in his green eyes, but I did not do it. My former teammates had taught me that caring could quickly go wrong.

    Yet a few days later, while I was curled up against him on the couch, the TV became blurry and my mouth began to open and close without a sound; I tried to say "I do not feel well", I had lost the ability to speak. I do not remember anything else, but when I woke up a little later on the couch, he was sitting on the floor next to me. Anxiety was on his face. He asked permission to run his fingers over my forehead, brought me a glass of water, and took me home after making sure everything was going well.

    During our first year of relationship, during my seizures, I often shouted to her to find someone else, a girlfriend with no health problems. I doubted that he could love me - really - after seeing me incoherently. In hindsight, I told myself that my inability to receive his love was just a manifestation of the anger I felt at the failures of my own body, and of my certainty of being more of a burden than a source of joy for him. It took me a long time, a therapy and her constant affection, patient, to soften me. During all the time we spent together, I learned to love and be loved, but also to love myself.

    Throughout our relationship, I have never been very good at asking what I wanted. Because of my fits, I refused to recognize my many contributions to our story: prepare dinner almost every night, paint her sweet watercolor words, plan trips to national parks or take care of her cat like if it was mine. Instead, I dwelt on the fact that I had to be "too cumbersome" to manage for him. When he did not offer me flowers and did not plan to go out when I told him how much it would please me, I attributed it to the fact that a relationship with me asked for more energy than if he went out. with another, and I told myself that I deserved nothing more than what he already offered me.

    But last year, when he moved to 1,600 kilometers for his first job when I was finishing my Ph.D., I had to wonder about my own worth. A large part of my desires was influenced by what I thought was necessary to make his life easier. They did not express what I really wanted: a partner who would not only love me sick, but also healthy. Although I loved him and thank him for taking care of me (which I still am), I began to realize that I deserved better.

    We ended our relationship, and I also moved 1,600 kilometers away, to an apartment where we had time to live together. In this city, where no one knew that you had to put your hands on my forehead to relieve the pain during a crisis or put me to bed so that the night chase my symptoms, old fears have resurfaced: and if I m collapsed while walking down the street and someone was taking advantage of me? What if I went to an appointment and started talking to each other without thinking?

    I did not give in to my fear like I did years ago. By going to this first appointment since my break, in the sweltering heat of the parking lot, my heart was beating in my chest. I felt myself filled with a self-esteem that had taken me years to cultivate. The simple fact of going to this meeting, confident and ready to meet someone, made me realize that I no longer let my illness define me. I opened myself to joy. And even though we did not see each other for long, when I sat down at the table, the man in front of me was warm and kind.

    At the appointments I've had since, I was able to choose when and how I wanted to talk about my condition. I take precautions by telling friends who I see and where I will be to make sure I'm safe, but I'm open to meetings. Different men invited me to dine in the restaurant, brought slices of watermelon very fresh so that we can taste them together in a nearby cove, or improvised a small dish in my kitchen. One of them even brought me half a dozen cookies when I came back from the beach, telling me that he had thought of me when I saw them.

    More recently, a man asked me how to provide the best care in a crisis, and I trusted him enough to tell him; I feel safe with him, something I was afraid of never feeling when I broke up with my ex. Today, whenever someone takes pleasure in planning an excursion, is considerate, even without issues, it reassures me about the truth that I try to convince myself from the beginning: with or without illness, I deserve to take care of me.

    I always go to dates, I evolve in the world with all my vulnerability, confident in my ability to love and to be loved.

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