I was riding in the van with my family. It was late at night after a full day at my clinic receiving treatments. I remember clearly my lack of mental clarity, how I couldn’t think straight, or even see straight. It was like I had a constant fever, even if my head wasn’t hot. I honestly couldn’t tell what was “real”—were my parents really my parents? Was I really alive? I would say something and immediately question if I had really said it, and then say it again ten seconds later. That particular night, I was obsessed with something random—grilled cheese sandwiches. I felt desperate to have grilled cheese that night. (My family had a tradition of having grilled cheese and tomato soup every Sunday night, which soon became one of my favorite meals. You know when you bite into a good grilled cheese sandwich, and the cheese oozes out? I named that “cheese drool.”) Sitting in my seat, my head lolled back, half-conscious. I begged my brother over and over again: “Are you really going to make me grilled cheese?” “Do you promise to make me grilled cheese tonight?” Still, my mind was not convinced. There was something about the spoken word that I could not trust. When you say something, words disappear, held only by our memories. So I finally asked my brother, “Can you write down that you promise to make me grilled cheese?” He did, and I clutched that piece of paper the rest of the night. Something about that tangible piece of paper—I could see it and touch it—gave me assurance, gave me peace.
Five years ago, when I was fourteen, my whole world started to fall apart. I became very sick with an “unknown” illness. (Eventually I was diagnosed with Neurological Lyme Disease.) Piece by piece, my body started to fail. As the disease took over my nervous system, my spine contorted, affecting various organs. Numbness and piercing pain consumed me. I could sense the communication breaking between my brain and nerves as I struggled to dress myself. Arms and legs stiff as boards, I felt like the Tin man, desperate for oil. I spent three years away from home for treatment, where everything became much worse before getting better. Far from home, I was missing out on “normal” everyday life. Life moved on without me. I spent a lot of time in bed, in the hospital, and going to the doctor’s office. My brain was infected and literally felt like it was on fire. I had daily seizures—sometimes as many as 70. Something had taken over my mind and body. At a time when my brain could not easily see the line between reality and imagery, writing was a backbone—I felt that if something was written it had to be true.
Throughout much of my life, I turned to reading and writing during times of uncertainty. When I was eight, my best friend moved away. Tears bubbled out as she drove away—I knew our friendship would never be the same. I comforted myself with books and became “friends” with Louisa May Alcott’s Jo March, Polly Milton, and Rose Campbell. I was encouraged to journal, but something in me could not get the words out. I imagined someone reading it in 100 years and thinking, “Wow, this girl didn’t know how to write.” One friend, who was several years older, suggested that we be pen pals. I began to write her and found that if I could carry a conversation, words flowed easily. Letter-writing allowed me to share everything with far-away friends.
Years later, after I got sick, my parents took me to Florida for treatment. For many months, writing letters lessened the 750-mile gap that separated me from my friends. We corresponded almost daily, and I still knew about the ins-and-outs of their lives. Oftentimes, when words would not clearly come out of my mouth, I could still write.
One morning I woke up, and my fingers were completely numb. As the disease progressed, my brain could not properly send out signals to my nerves and muscles. My fingers tingled but were too weak to grasp a pen. The key to the door of my thoughts had been stolen.
I felt angry and frustrated once my body “imprisoned” me. My feet and legs turned in and stiffened. Sadly, I accepted being trapped in a wheelchair. The inability to use my hands and feet took that anger to a whole different level. I was so tired. I didn’t want to fight. My physical therapist said he saw “the light of determination” go out of my eyes. I didn’t want to go through the pain to walk again. I resolved that I would be a blob in a chair and go on with my life. Plenty of people live normally in wheelchairs, don’t they? One day, as I crawled up the stairwell on my knees, hoisting myself up one step at a time, I realized I did want to walk again. I decided that fighting to get my life back would be worth it.
Reading saved me from overwhelming frustration. I scoured the internet in search of people who were “like me” and devoured their stories of healing. Even though I could not write, I was bombarded with “happy mail” from friends and family back home. From framed Bible verses to wooly bathrobes to “get-well-soon” letters, our mailman stayed busy. The shape and size of the gifts didn’t matter. All were gifts of love, sustaining me each day. One gift was uniquely special. It was a simple necklace engraved with the Serenity Prayer. I was its third owner. Each of the young owners before me had struggled with health problems. I read those words over and over again and clung to what or who they represented. I took comfort in knowing that two people before me had gone through darkness and crawled out of it. Recently, I was able to pass it on to someone who needed it more. These simple gifts were the most powerful. I channeled my hobbyist skills into carefully preserving the letters in a scrapbook and would often thumb through the pages to cling to those words of love. I had to immerse myself in hope.
That night in the van, I was drifting out into the darkness, literally. Consciousness anchors us to reality, and I was losing my anchor. Once we got back to the house we were staying in, my brother made me grilled cheese. The writing on the note became truth.
Eventually, all of the “get-well-soon” cards and notes of encouragement came true too. After months of therapies, my muscles began to wake up. I grew stronger. I felt pure joy when I could finally grasp a pen, think clearly enough to write intelligible sentences, and respond to my friends. My brain finally felt unscrambled. I was on the road to a new beginning.