The Onset - This photo pretty much sums it up
Updated: Dec 5, 2020
I was going through a box of photos when I found this picture. Looking at it brought back a flood of memories and emotions.
This photo was taken when I was seventeen, a senior in high school. It was Christmas day and I was opening presents with my family at my Grandparents house. I was so exhausted, I literally fell asleep in the middle of opening a hat, glove and scarf set! At the time, my family found this hilarious and continued to tease me for weeks to come. My sisters dubbed my ability to fall asleep anywhere, at anytime, "my superpower." Looking back, and knowing what I know now, this was the beginning of my journey with Lyme Disease.
Life as I knew it began to change. The boundless energy I always took for granted was fading. Until then, my life seemed effortless. I was a dancer. I spent my days after school studying classical ballet, tap, and modern jazz - an art I enjoyed since I was four years old. It was my passion and my discipline. The joyful experience when music and movement were in unison and the balance of grace and control was enpowering. I was an honor student and cheered for our high school football team (go Golden Eagles!) I had a part time job at McDonald's, saving money to buy a good camera. I was constantly creating... painting, sketching, designing. I woke everyday with a sense of optimism and wonder of what the new day had to offer. My sister piled cereal boxes at the breakfast table every morning to shield herself from my zest.
Now, I guess it would seem that all of this activity would warrant exhaustion, but this was a different kind of tired, a crushing, heavy, immobilizing fatigue. I started falling asleep in class at school. And then the headaches started. Headaches that would last for days or weeks, with no reprieve. The headaches made it difficult to think or focus. My mother took me to the doctor. I looked fine...normal. Vitals were good...all normal. I was told to "take it easy" and "get some rest"... "you will be just fine," the doctor said.
I took it easy and got some rest, but it wasn't just fine. Now the really weird stuff started.
I started feeling a buzzing throughout my body, an internal vibration. I felt like there were tiny bubbles constantly popping just below the surface of my skin. My vision changed. Things sometimes looked cloudy or distorted with occasional random shapes floating by, disrupting my illusion of the world around me. When tested, my vision was perfect, yet I was struggling to see. Reading became difficult and my grades started plummeting. I had very strange sensations that my lips, nose or hands were swelling up like balloons and I would to run to a mirror to confirm that I still looked like myself. At random times I would have difficulty taking in a breath. It was terrifying. I felt like a fish who was plucked out of her serene bowl, gasping for air, begging to be thrown back into the safety of the water. Was I dying?
Nothing was as it was before. Everything was an effort. My once graceful body felt so weighted down. I moved through my day like I was wading through Jello...or stuck in quicksand. My brain felt like it was stuck. I was having trouble remembering peoples names and difficulty with recalling words. Embarrassed, I was starting to shy away from conversation.
My pupils would rapidly constrict and dilate for no apparent reason. My parents witnessed this and started to question if it was substance abuse causing these unexplainable occurrences. It was not. I wasn't really a partier, unless you count the occasional Friday nights "back the tracks," where grain alcohol and Hawiian Punch was served from a trash can in the middle of the woods (is that just a Scranton thing?) I mostly went to be with friends, and my awesome boyfriend, and to hang out under the stars and stay warm by the fire. It was my first sense of freedom and independence.
It wasn't until the next terrifying sensations started that I was hospitalized. I became numb on the entire one side of my body...almost paralyzed. You could see it in my face where my eye and mouth dropped. My parents got me to the ER and I was admitted. This began a week of what I remember as torture. I was tested for everything imaginable..well almost everything. I had scans and X-rays, blood drawn constantly, EEG's, EKG's, EMG, which, if you aren't familiar with that one, it is an Electromyography, which measures muscle and electrical activity by inserting needles in the tips of all your fingers and toes, and various other parts, then sending electrical currents throughout your body. I also had a spinal tap.
One day, I was left unattended in my wheelchair out in the hallway, chart in lap. When I opened the folder, in large red writing, it said, POSSIBLE STROKE or BRAIN TUMOR. I went blank, but deep down I felt it had to be something so major to be causing this total abandonment of the me I used to know. All of my fears were validated in that manila sleeve.
After waiting for all results, with numerous doctors and specialist in and out of my hospital room, it was determined that I was experiencing complex migraines. I was prescribed an anti depressant and told to stop drinking Mountain Dew.
My symptoms continued. Some were constant and others would come and go and occasionally a new one would manifest. I wasn't offered any real solutions in managing this, so I did the best that I could on my own. I stopped taking the anti depressant because it made me feel dull and wasn't doing anything for my situation. I secretly took the Merk Medical Manual from my mothers stack of nursing school books and carried it in my school bag every day. I'm not sure why, but I guess it gave me some sense of comfort and control. My good friends new about the book and lightheartedly teased me, but they had no idea what I was going through on a regular basis.
I began a form of meditation. It happened intuitively. Back then, there were no self help books that I had access to or youtube videos to teach me. I started imagining my body slowly filling up with a white light, and when my body was completely full, I imagined the light streaming from the top of my head, my fingers and my toes. It didn't change my symptoms, but it did give me a sense of calm during dark moments.
I started to live with my new normal and on particularly rough days I would remind myself to hang on. "It will pass," I told to myself. I rarely ever spoke about what I was experiencing to others, even though my strange sensations were happening right there in front of them. I often wondered if they knew what I was experiencing or if anyone else was experiencing the same as me. All I did know was that I wasn't going to let this define who I was.
I don't know if I was tested for Lyme disease when I was hospitalized or not. Traditional testing isn't dependable and very often doesn't detect Lyme, even today. It wouldn't be until over thirty years later that I would get a proper diagnosis and treatment that is helping change my life.
Just keep swimming....
Please feel free to contact me with any questions or comments