Alone - Submission for SICK Magazine
It was the 4th of July because…well, of course it was. Of all the days to develop a health condition with sensitivity to sound, my body would obviously choose it to be on the loudest holiday in the US. I was 13. We lived in an area where a short drive up the hill from our home, an empty field looked across the highway to the fairgrounds where bursts of light shot into the air and lit up the night sky every Independence Day. It was a yearly family tradition to watch the fireworks together. The short distance allowed us to relax without worrying about the mayhem of parking or traffic for the holiday celebration. My family and I were lounging around the television a few hours before the fireworks were slated to begin. The pain started innocuous enough. A gentle tug in the back of my head. Just enough to let me know it was there. While we sat on the couch watching "Law & Order: SVU," the tugging became more of a grip. The grip became a squeeze. The squeeze became a vice clamp. The sound and light blaring from the screen became grating. Pain and nausea came marching through my body hand-in-hand. Water brash coated my mouth, and I ran to the bathroom just in time to release my stomach's contents into the toilet bowl. The act of my stomach retching over and over created wave after wave of fire enveloping my brain. The pain was so severe I felt on the verge of losing consciousness. I managed to stand up long enough to grab ibuprofen from the medicine cabinet and chug water from the facet before crumpling back down and laying my face against the cold linoleum floor. No one came to check on me as I lay on the floor, feeling like I was dying. What felt like an eternity was only about 30 minutes. I managed to bolster enough energy to stumble out of the bathroom, crawl up the stairs, and plop myself into my bed. I passed out the moment my head hit the pillow. As it came time to leave, my mom peeked into my room.
"Are you coming with us to the fireworks?"
"No."
I remember lying in bed and feeling the hammer come down on my head with each door slam of the family car as they left to go to the fireworks without me. Tears streamed down my face. My room was filled with the sound of isolation, and the silence was deafening. This isolation would become a norm well into my adulthood.
Migraine came into my life at a slow pace. Over 20 years, I went from a migraine every few years to 15-20 per month. Simple migraines became vestibular and hemiplegic. I went from being managed by my primary care provider to a neurologist. Imaging. Labs. Testing. All results were considered normal, including the lesions on my MRI – seen commonly in migraineurs. As everything progressed, I became more and more alone in my personal life. Initially, everyone was so caring. Friends checked on me to see if I needed anything. My family took me to the hospital when rescue medications didn't work, and I needed to seek medical care. My partners would grab an ice pack for my neck and turn off the TV when a migraine hit. Over time, the attentiveness and offers for help changed. The unpredictability of my health became a burden to myself and those in my social circle. Friends stopped inviting me to parties because I couldn't be counted on to attend. Family could not comprehend that a migraine is not "just a bad headache". I heard coworkers whispering they felt I was "milking" my illness to get days off. I lost job after job due to absences, and not a single person from Human Resources reached out to educate me on options like FMLA. Romantic partners were not able to support an invisible illness they couldn't understand. I joined online support groups looking for those whose life experiences I could relate to, only to find most groups were full of people comparing who had it worse, like this way of life was some kind of competition. How is being sicker than someone else a win? I felt the more I reached for companionship, the lonelier I became.
That is something no one tells you about a chronic illness diagnosis - how alone you will feel. Alone in your person. Alone in your thoughts. No one tells you how much it can take from you. Like your relationships and your livelihood. Like your dreams. I am fortunate enough to have graduated from college with a bachelor's degree and to have had a career before I progressed to where I am now. I went back to school for my doctorate only to have a 2-month flare completely incapacitate me and force me to drop out halfway through my program. The overachiever in me felt like an absolute failure for "letting" my illness win. I saw my classmates posting their graduation pictures on social media and wondered why wasn't I stronger? Why wasn't I celebrating with them? Why couldn't I succeed? I spiraled into a sea of depression, isolating myself further. I couldn't cope with the constant pain or the inability to become the person I strived to be. I began throwing my own pity party with the world's tiniest violin as my musical guest. It was the lowest point I had ever been in my life.
After breaking through my flare with the help of my neurologist, I decided to find a counselor. I had become infatuated with this "woe is me" mindset and couldn't break out. I realized I didn't have the coping skills needed to work through what was happening to my body and my mental state. It took 20+ years, but better late than never, right? I am actively working on changing my mindset to one of gratitude instead of hopelessness. Learning to be grateful for the bad days so I can appreciate the good ones. Understanding that having good days is a privilege not everyone gets to experience. I've been fortunate enough to find a partner and a few friends who are compassionate to my life experience, so I have a support system to counteract those who can't grasp this life is not a choice. Growth is a never-ending journey, but so is living with a chronic illness. It is all about taking life one day at a time.
