Lifting my gaze upward, I stare at the immense insurmountable wall. I calculate how I’m to muster the energy to scale it, yet I remain lost in uncertainty. In a way, it is partly my creation. The longer I have been sick, I’ve inadvertently added to its foundation until the result became this tenacious structure standing between me and every healthy individual I know.
There’s not actually a physical wall. It’s hypothetical. Few understand the isolation of having your body become your greatest enemy. Peers my age cannot grasp the complexities of chronic illness, especially in the stages of life otherwise marked by youthful energy and flourishing abilities. I think my doctor was aware, and his knowledge of that at the time of my Mast Cell Activation Syndrome diagnosis gifted me the first materials to begin the construction of isolation. My healthy friends and I took turns—casting brick by brick to build the menacing divide. The hospital admissions, the pain that settled deep in my bones, and miscellaneous pills with wretched side effects served as the plaster.
Later, I learned that the “rare” in rare disease did not have to possess the connotation of loneliness. The internet is a wonderful invention, and I came in contact with a group of girls who suffer from the same diagnoses as I do. Our friendship plowed through the wall I had erected with startling speeds. Although we live in various parts across the globe and seldom, if ever, meet in person, distance is irrelevant. We have a unique connection based on direct firsthand experience of chronic illness in young adulthood.
Together, we mourn the capacity in which our lives have changed. We cry over the colleges we never had the opportunity to attend, the social outings gone awry, as well as the discomfort of our symptoms. But our friendship is more than a pity party of two or three. We uncover humor in even the troubling situations our illnesses put us in such as the Skype sessions to talk about the latest episode of Grey’s Anatomy that ironically end in all of us dialing 911. I don’t have to push the rest of the world out because I found solace in their understanding.
Being chronically ill, our bodies are not invincible. While we appear relatively healthy on the outside (minus the tubes and lines), this disease is destroying our insides at varying rates. The ticking time bomb concept is not one we care to consider, pushing it into the deepest, darkest recesses of our minds, but it is a reality we have been forced to confront upon the deaths of our own.
We have suffered the loss of many brave souls, Taylor included. Even if we’ve never met face-to-face, that loss reverberates throughout the entire chronically ill community. The friends we look up to, the ones who we rush to tell as soon as something good or bad happens, are suddenly gone—whisked away into another life we are not yet privy to. We miss the conversations, and the laughs that once distracted us from the physical agony we endure daily.
When a friend with a mutual diagnosis passes away, their absence is selfishly terrifying. I will admit that along with the typical throes of grief, we bear irreparable guilt over having survived. We think, “Why wasn’t it me?” The next thought that surfaces is, “That could have easily been me.” Their passing is a reminder that our friends, so determined, strong, resilient, and faithful were not exempt from the effects of Mast Cell Activation Syndrome. Eventually, none us will be.
With each loss, I grapple the urge to lift the trowel to raise the wall of desolation again. But keeping the lives of my friends too soon departed in the forefront of my memory, I fight it. Their legacies continue as an encouragement. If they could fight to see another day, maybe I can too.